“Discharged”: Labor Processes in Skilled Home Health Care

Dissertation

Presented in Partial Fulfillment of the Requirements for the Degree Doctor of

Philosophy in the Graduate School of The Ohio State University

By

Sherry Newcomb Mong, M.A.

Graduate Program in Sociology

The Ohio State University

2012

Dissertation Committee:

Dr. Steven H. Lopez, Advisor

Dr. Vincent Roscigno

Dr. Liana Sayer

2

Copyright by

Sherry Newcomb Mong

2012

ii

Abstract

Recent changes in health care delivery and quicker release of patients from

hospitals and rehab facilities have meant that highly complex medical procedures, such as

giving intravenous drugs and placing tracheostomy and nasogastric tubes, are now

executed by family caregivers at home. To proponents, such home care is a boon to

patients and the public; critics see only the exploitation of unpaid labor. Neither

proponents nor critics, however, study unpaid skilled care as a systematic set of work

processes. Drawing on 62 interviews with family caregivers, home care nurses, and

expert observers, I develop a labor-process perspective on complex unpaid home care and

stake out a nuanced middle ground. Keeping loved ones out of hospitals, emotionally

fulfilling caring relationships, and mastering new skills, I show, yields real satisfaction

for unpaid caregivers, many of whom are indeed willing and able to learn the necessary

skills. But I also document numerous sources of unnecessary difficulty, frustration, and

work stress. Different forms of insurance provide different levels of nursing support to

family caregivers; the quality of training varies widely; the system provides inadequate

social supports to caregivers; and the economic hardships borne by many caregivers go

uncompensated and unrecognized. Finally, families have variable resources, divisions of

labor, and relationships, and the expectation that all family caregivers can reach a state of

independence is ultimately unrealistic.

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Dedication

Dedicated to: Alan, Andi and Colin

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Acknowledgements

First, I would like to thank my advisor, Steven Lopez for his kindness, patience,

insight and encouragement during this project. From the beginning, Steve emphasized

that he thought this was a very special project and that I should work hard to turn it into a

book manuscript. He never stopped believing in me and I could not have accomplished

this study without him. Steve has an uncanny ability to look at all angles of a research

question and cut through to the heart of it. Some of my fondest memories of graduate

school are sitting in his office, going over findings and discussing literature. He provided

emotional support and guidance, listened to and honed my ideas, and told me I was doing

a “great job” at just the moments I needed to hear it. His humor, candor, and genuine

spirit were resources for me and provided sparks of optimism during the long dissertation

process.

I would also like to thank Vincent Roscigno. Vinnie was my advisor during a

significant portion of my graduate career and provided countless days of counsel and

guidance. It was my privilege to work with him on a project involving workplace

discrimination. Vinnie mentored all the graduate students in the project and taught us a

great deal about the profession of sociology. His support and encouragement allowed me

to better understand the research process. His office was always open to me. I stopped by

on many occasions to discuss research and life. I found him to be one of the most

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understanding people I have ever worked with and I will forever be grateful for his

thoughtful style, caring nature, and mentorship.

I met Liana Sayer shortly after arriving at graduate school in 2003. Liana was

always willing to stop and talk with me –a welcome occasion for a graduate student. She

often asked how I was doing and listened as I recounted the latest updates. Liana

provided feedback and encouragement and was a person I knew I could count on if I

needed help. I sincerely appreciate her guidance throughout the graduate years.

There are many other people in the Sociology Department that deserve my thanks

and recognition. Susan Ortiz and Eileen Bjornstrom were, and still are, fabulous friends. I

cherish their loyalty and trustworthiness. I was fortunate to share an office with Susan,

along with Jill Harrison and later, Justin Schupp. In these closed quarters I shared many

of the frustrations and joys of graduate school, and I will always look back with

appreciation at the advice and camaraderie I enjoyed there. Lisette Garcia was also a

trusted colleague and friend.

My personal friends and my family have also been incredibly supportive

throughout this time. Barb Breth and Beth Wepprich listened to me on many occasions as

I advanced through the program. I couldn’t ask for better friends. My mother, Iva

Newcomb, has always been a source of emotional support and quiet strength. My sister,

Terry Newcomb, provided immeasurable support –even document formatting advice –

during the dissertation process. My mother and father-in-law, Eloise and Neil Mong,

provided not only emotional support but also hands on help with childcare and errands.

My children, Andi and Colin, were also extremely supportive of my graduate studies, and

always understood when I needed to work.

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Most importantly, I thank my best friend, and life partner, Alan Mong. Without

him, I could not have found my passion, and may not have known how to look for it. In

multiple ways –through conversations, encouragement, even hands on help –including

computer assistance –he has been a constant source of strength and support throughout

these years. Thank you, Alan.

Finally, I wish to acknowledge partial funding received for this dissertation

project including a Dissertation Grant, from the Ohio State University Department of

Sociology; the Alumni Grant for Graduate Research and Scholarship (AGGRS)

Dissertation Grant, from the Ohio State University Graduate School; and the Coca-Cola

Critical Difference for Women Graduate Studies Grant for Research on Women, Gender,

or Gender Equity, from the Ohio State University Department of Women’s Studies.

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Vita

November 13, 1961…………………………Born – Lebanon, KY

1983…………………………………………B.S. Accounting, University of Kentucky

2003…………………………………………M.A. Sociology, Ohio University

2005…………………………………………M.A. Sociology, The Ohio State University

2003-Present………………………………...Graduate Associate, The Ohio State

University

Publications

Sherry N. Mong and Vincent J. Roscigno. 2010. “African American Men and the

Experience of Employment Discrimination.” Qualitative Sociology 33(1): 1-21.

Vincent J. Roscigno, Lisette Garcia, Sherry Mong and Reginald Byron. 2007. Racial

Discrimination at Work: Its Occurrences, Dimensions, & Consequences.”

Research in Race and Ethnic Relations. The New Black: Alternative Paradigms

and Strategies for the 21st Century 14: 111-35.

Vincent J. Roscigno, Sherry Mong, Reginald Byron and Griff Tester. 2007. “Age

Discrimination, Social Closure and Employment.” Social Forces 86(1): 313-334.

Sherry N. Mong and Vincent J. Roscigno. 2007. “African American Men: A Precarious

Historical Legacy.” Pp. 135-152 in The Face of Discrimination edited by Vincent

J. Roscigno. Lanham, MD: Rowman & Littlefield Publishers, Inc.

Fields of Study

Major Field: Sociology

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Table of Contents

Abstract ................................................................................................................ ii

Dedication ........................................................................................................... iii

Acknowledgments................................................................................................ iv

Vita ...................................................................................................................... vii

List of Tables ....................................................................................................... ix

Chapter 1. Introduction .......................................................................................... 1

Chapter 2. What Do Home Caregivers Do?.......................................................... 34

Chapter 3. Caregivers in a Fragmented System .................................................... 68

Chapter 4. Nurses’ Labor: Skills Transfer, Identity and Emotion ......................103

Chapter 5. On the Job Training ............................................................................129

Chapter 6. “Am I Doing This Right?”: The Weight of Responsibility ..............163

Chapter 7. Integrating Caregiving Labor with Life ............................................192

Chapter 8. “You Do What You Gotta Do”: Identity and Emotion in Skilled

Caregiving ...........................................................................................................228

Chapter 9. Conclusion .........................................................................................265

Methodological Appendix ..................................................................................274

References ............................................................................................................279

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List of Tables

Table 1. Types of Skilled Care ..............................................................................40

1

Chapter 1: Introduction

On the day I brought my three and a half year old son home from the hospital, I

sat in the big oak rocker in our family room, taking a single moment to reflect on the

sights and sounds around me. I looked out the window. It was nice outside. Sun drenched

the dark green meadows that surrounded the house and I imagined on-lookers on their

way to home or work, taking notice of the peaceful scenery. As I rocked back and forth,

I considered the commotion in the room around me. In contrast to the flowing meadows,

inside there was an entirely different landscape –a landscape with rocky terrain and

blurred boundaries. A landscape riddled by uncertainty.

My son, who has cystic fibrosis, had just finished his first hospital admission for

a lung infection. The day before, the hospital resident had explained to me that “most

parents” of children with cystic fibrosis administer IV antibiotics at home. That way,

their child is released from the hospital sooner and is not exposed to the horrible bacteria

that often plague hospital wards. It seemed logical, and I had desperately wanted to do

the right thing for my son. I was not working outside the home at the time and my

husband, a physician, had long hours at work. We had agreed that I would stay home

while the kids were young, and return to pursue a master’s degree once they reached

school age. In that situation I seemed the “natural” person to do the care. But I now

realized that I had no real concept of what this new kind of care would mean for me.

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I could barely register the actions of the home health nurses and family members

around me. More vividly I remember the mess of tubing, wires, IV poles, and bags that

were draped in half opened boxes about the family room. I walked over to the couch to

join the nurse. She began talking directly to me. She was kind but stern. She wore long,

straight hair, and I remember thinking her earthy look somehow clashed with the severity

of the situation. She told me it was important to draw up the saline now so that it could be

refrigerated for future use. That way, she said, I wouldn’t have to be bothered with it

every time I administered the IV antibiotics.

As I was trying to focus my thoughts, she showed me how to uncap the syringe,

draw air into it, plunge it into the saline bottle, push the syringe to release the air into the

bottle, and pull back. If any air bubbles formed in the syringe, as they most certainly

would, I was to flick the syringe with my thumb and middle finger to break them up.

Next she showed me how to manipulate the syringe so I could shoot out the excess air

before recapping it. It was extremely important, she said, not to touch the surface of the

bottle or the tip of the needle with my fingers. Cautiously I performed the duties, more

than once spewing saline into the air as I struggled to shoot the excess air out of the

syringe. The first time made me gasp, but she seemed unconcerned, so I learned to watch

the unpredictable fountains as they shot straight up then cascaded down and out before

landing on the carpet and furniture. She then instructed me to perform the same

procedures with the heparin. I complied, while she observed me.

She asked if I had any gallon sized plastic bags. I said I did. Following her advice,

I labeled the bags with a big “S” or “H” using a black permanent marker. We then placed

the freshly prepared saline and heparin syringes into the respective bags. She said this

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would help ensure that I didn’t get the doses mixed up when I needed them in the middle

of the night. We went to the refrigerator. In the shelf directly under our usual stock of

milk and orange juice, we placed the saline and heparin bags beside several other

prepackaged bags of antibiotics. Until that moment, I hadn’t realized that “hospital

things” had any place along side my ketchup and mayonnaise. It was an odd

combination; the placement seemed unnatural and unsettling.

I slowly made my way back to the rocker – a place of seeming refuge in my quiet,

private chaos. Still in a head fog, I remember sitting dumbly as the nurse spelled out the

formula to administer the antibiotics. “S… A… S… H,” she told me. “Saline, antibiotic,

saline, heparin.” I repeated the command; but in the rush around me, I had hundreds of

unformed thoughts flying like fireflies in the meadow outside. I felt a deep sense of

confusion. I was afraid, and worried in a way I could not explain.

I had been an accountant by trade. On that first day of at-home nurses training,

two themes permeated my otherwise scattered thinking. First, I had never been to nursing

school. I had no medical training and no inclination whatsoever toward the medical

profession. Surely I wasn’t the best person to administer IVs to my son. What if I made a

mistake? What if I hurt him? What if something went horribly wrong? How would I be

able to handle a situation like that? Second, I believed the training I did have to be

virtually useless. Though well educated, my prior work and personal experience were

inadequate in preparing me for the tasks that day or the ones that would certainly lie

ahead. Accounting was as polar opposite as one could imagine from administering IV

antibiotics. Mothering, while giving me skills to work through a myriad of child rearing

issues, from fixing “boo boos” to instilling personal values, gave me no help at all on

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how to administer this type of medical procedure. Surely this process –whatever it was –

was way beyond mothering.

And so I felt I lacked a knowledge base from which to formulate the feelings I

had. My own thoughts were not even sufficiently developed enough to express myself.

Although I didn’t know it at the time, I was standing in a situation akin to what Dorothy

Smith (1987) has described as a “line of fault”: A “rupture” between my experiences and

“the social forms of consciousness –the culture or ideology of … society” (p.49).

Foremost, I wanted to be a good mother. But the skills I needed to learn required much

more timing, precision and training than the typical housework or care work I had ever

done or known about. In housework, as in child rearing, I could decide what was right,

and go at my own pace. Now I was being judged on something totally different. I was

being asked to perform a medical procedure, which was more in the scope of registered

nursing than mothering. And the stakes were very high. I knew that I had to do

everything right, or it could have huge implications for the health of my son. I also had

the responsibility of conveying to him that this was the right thing to do. I needed to let

him know that this would be part of his life, and was in fact meant to help him. I did not

want him to be afraid.

But nagging questions continued to haunt me. Was it appropriate that I should be

doing these types of procedures to my own son? Was I competent to do them? What was

my role here? Would the stress of giving my son IVs interfere with my ability to care for

him by just being his “mom”? Would I be able to give him the emotional support he

needed while dealing with my feelings of anxiety? Further, he had left the hospital with a

peripheral IV in his arm. Should it come loose, the home health nurse would have to stick

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him again with a large needle. Shouldn’t home be a place of comfort and hospitals the

place for needles and blood draws? I longed to run to the meadows outside and escape

the shaky terrain within. Surely someone else could do a better job of this than I could.

But on that day, as in all the rest, my desire to be a “good mother” won out over

the fear that threatened to paralyze me. I didn’t bolt, but stayed and learned the

procedures. And through the years, with bouts of required antibiotics, sometimes running

2 to 3 IV lines for up to four times a day, for periods lasting up to two weeks, on top of

regular cystic fibrosis treatments, such as breathing treatments and chest physical

therapy, I did the job. These were, indeed, intense periods of exhaustion and little sleep.

During most of it, especially the first several runs, I was racked with anxiety. I checked

and re-checked my work. I pored over my notes. I constantly re-organized medicines to

get a better handle on things, and through it all, I was still subtly terrified. Were it not for

my husband, who was not only a wonderful resource, but also shared the actual work

with me when he was not at his job, I’m sure things would have been much more

difficult. While I know that I am privileged in this regard (See Tronto’s discussion of

white women and “the problem of partial privilege” (1993:17)), it is also true that many

of my experiences with home health care were often alone, when my husband was

unavailable or called away.

During those times, trying to run IV lines in my son’s bedroom at night,

awkwardly uncapping, injecting, remembering S…A…S…H, while taking care not to

wake him, I have often wondered about the experiences of others who are in similar

situations. Indeed, my curiosity has led to a fundamental concern to understand more

about what other caregivers go though when they learn skilled medical labor. What kind

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of procedures do they have to learn? What is the process like for them? Do they, too,

have a rough time processing their new duties? Are their problems like mine, or

different? My desire to find answers to these types of questions –questions embedded in

the social processes of what philosophers such as Kittay (1999) call the “human

condition” –was a fundamental reason for my decision to go to graduate school and study

sociology. My training as a sociologist led me to work by C. Wright Mills (1959) and in

Mills’ terms, I wanted to use my “sociological imagination” to understand how my

personal troubles were linked to troubles in the lives of others. According to Mills, if I

could find linkages, I would have a greater understanding of the public issues related to

skilled home health care – issues which affect society at large.

And so I wanted to know how other people deal with the skilled nursing they

perform –both emotionally and physically. I wanted to hear their stories and understand

more about what they go through. I wanted to know if they, at least initially, were as

bewildered as I had been. I also wanted to talk to the nurses who teach the labor. I wanted

to find out how they show others how to perform these procedures and I wanted to see

the home health process through their eyes. As a result, between January 2009 and

February 2010, I conducted 62 in-depth semi-structured interviews in two mid-western

states. I interviewed 28 caregivers from 25 families (6 were spouses who were caring for

children), 21 registered nurses, 7 other interested parties including two social workers, a

case worker, a home health agency administrator, a Medicaid administrator, a home care

advocate/ lobbyist and a caregiver advocate. I also interviewed 6 adult care recipients

who expressed interest in the project and offered to give their viewpoints. In addition to

interviews, I attended home health and nurse conferences, conducted dozens of informal

7

interviews with nurses, social workers, and caregivers, spent a day and a half in the field -

one day riding with home health nurses, and another morning observing patient teaching

in a clinic. I also attended caregiver functions, including one caregiver support group

(See Appendix A for a complete discussion of methods used.) I was able to learn from

people who are directly involved in the process, and believe that, taken together, these

stories provide rich insight into how home health labor is enacted in the lives of women

and men. Importantly, while theirs are not my stories, my experiences certainly are

relevant and no doubt contribute to the work I do, as I attempt to look beyond the green

meadows that surround our visions of “home life” and capture instead glimpses of the

terrain inside.

The Debate Over Home Health Care

At first glance, at-home skilled nursing seems a natural result of medical

advancement in a technological age. People are now able to access medical information

about their illnesses on the Internet. They can live at home on portable oxygen. They can

inject themselves with IV mediations –something impossible forty years ago. Moreover,

home health advocates –including home health agency managers, lobbyists and many

medical professionals–contend that patients are happiest and heal best in their homes –

away from hospital distractions, multiple caregivers, and other patients –which can

increase infection rates and reduce quality of care. Proponents also point to the immense

cost savings of using home health care over institutionalization as well as the dignity and

independence that care recipients enjoy at home (NACH 2008).

Those critical of the push toward at-home skilled caregiving, however, argue that

it is driven by cost savings– an attempt to unload labor on to unpaid family members who

8

have little recourse (Glazer 1993). Opponents contend that home health care is often

touted as “cheaper” with no real consideration of caregiver costs. In a recent column on

our self-service society, Ellen Goodman, muses that we are now “expected to interact

with ‘labor-saving technology’ without realizing that it’s labor-transferring

technology…In an era when every operation short of brain surgery is done on an

outpatient basis, nursing care … has been outsourced to family members whose entire

medical training consists of TiVo-ing Grey’s Anatomy.”

So how are we to conceptualize skilled at-home nursing care and its effect on

families in contemporary society? To analyze the two opposing views, we must first

realize how they differ in their approach to skilled caregiving. The first viewpoint casts

the home as a place of rest and healing. It emphasizes the patient’s comfort, and the

caregiver’s love and concern. This view, however, downplays the costs associated with

caregiving. This is a large understatement. Scholars estimate that family caregivers

provide approximately $196 billion per year in “free labor” (Folbre 2001); and a recent

survey by the National Alliance for Caregiving (2007) estimates that caregivers spend an

average of $5500 per year, which does not include their lost wages. My interviews with

caregivers who have performed skilled care also reveal that they face many unmet needs.

Sometimes nurses are only able to stay a short amount of time and home life is often busy

and filled with other obligations. There are issues with balancing work and family care,

and many caregivers experienced sleeplessness and anxiety. Though most caregivers

developed a “you do what you have to do attitude” and were able to figure out a way to

perform the tasks, it was not a simple process.

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The second viewpoint recognizes caregivers’ labor, and the enormous

contributions they make, but downplays the satisfaction that caregivers have in helping

their loved ones. Under a strict interpretation of this viewpoint, caregivers seem more like

“victims” than anything else. Many of the caregivers I spoke with were ready to leave the

hospitals or rehab facilities with their loved ones, and preferred to be in familiar and

comfortable surroundings. Overall, most caregivers also expressed that they wanted to

take care of their loved ones, and many felt deep satisfaction in their caregiving labor.

The home health debate centers on complicated arrangements, which bridge

families with the mandates and goals of medical institutions and players. At-home

medical procedures are a multi-faceted and largely unexplored dynamic which take place

among patients and their caregivers, medical institutions, home health agencies and third

party payers such as insurance companies and government entities. Moreover,

interactions occur within a fragmented health care system in which local medical culture

varies greatly. The home care debate is informed by the work of a variety of scholars

including geographers, bioethicists, nurses, and medical sociologists, who have pointed to

the need to better understand social processes in home care. Most acknowledge that many

patients and caregivers prefer home care to institutionalization. Bioethicists, however,

have questioned the lack of regulation and the relative absence of physicians from the

home care process (Arras and Dubler 1995). They, along with feminists have also

questioned the assumptions rooted in home care, that women will usually be the ones to

do the labor (Finch and Groves 1983; Arras and Dubler 1995; Noddings 1995). Touting

family care as better than institutional care, idealizes home as a place of unquestioning

affection, while ignoring the societal subordination of women, as well as the fact that

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home life is often filled with conflict and power differentials (Ungerson 1990b; Yantzi

and Rosenberg 2008) (See also Osmond and Thorne 1993). Bioethicists contend that

home care arrangements should seek to understand the nature of the relationship between

caregiver and care receiver (Noddings 1995) and that there should be an equitable

balance between the interests of each (Collopy et al. 1990; Noddings 1995).

Thus, current research, as well as my own, shows that the panacea-like home care

rhetoric and the forced labor scenario are both oversimplifications. “Home care for all”

downplays caregiver labor and does not consider the particular nuisances of the home

health situation and unmet caregiver needs. Seeing caregivers as “forced laborers”,

however, casts them as “victims” and denies their agency as caring family members who

genuinely want to help their loved ones when they need them most. An honest

assessment of home care should therefore consider both of these views while

recognizing, as Abel and Nelson (1990) contend, that caregiving involves both love and

labor (Graham 1983).

It is clear that we need further assessment of the daily processes enacted in homes

and a better understanding of how caregivers experience these processes –both

emotionally and physically. Drawing on literature in feminist and caregiving studies, a

central argument of this study is that these unpaid, skilled caregiving activities need to be

considered as “labor processes” -labor processes that include both emotional and

physical/instrumental labor. Given that the relationship between the caregiver and care

recipient is central to caregiving activity (See Abel 1991), to invoke a study of the

“labor” or the “work” involved in informal caregiving may seem counterintuitive. But I

argue that this is exactly what is necessary. If we are to study the processes by which

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credentialed professionals teach medical procedures to lay persons –procedures that

would require formal licensing if performed in institutions –then we should consider

these activities as “labor processes”. We should try to understand how caregivers learn

the labor and how they conceive of the care work they perform. I argue that such a study

requires an analysis of the everyday types of labor that are involved in this caregiving.

Framing the learning, execution and construction of these tasks as labor processes, means

that we can think of them and talk of them in useful ways that we couldn’t before, and we

can do this while still recognizing both the love and labor (Graham 1983) in caregiving.

Unpaid Carework and the Sociology of Work

It is notable that workplace scholars have generally confined their labor analyses

to paid wage labor and have not considered unpaid labor. Early studies of labor processes

were performed in manufacturing settings and offered detailed descriptions of methods

workers used to learn the work, workers’ strategies and feelings about their labor, and

their identity construction and consent to the labor process (Roy 1952; Braverman 1974;

Burawoy 1979). A significant contribution by Burawoy (1979) was that workers

developed self-identity though workplace relations. Moreover, through “game playing”

on the shop floor, they gave their consent to ideals that legitimated their exploitation.

Although later work focused more squarely on gender as a central feature of shop floor

labor processes (See Salzinger 2003), labor studies have still stuck almost exclusively to

analyzing work processes that involve paid workers.

The insufficient recognition of unpaid workers in labor analysis is unfortunate,

and considering the enormous contributions made by feminist scholars, lacks sound

12

theoretical grounds. Feminist scholars have convincingly shown that capitalism and labor

markets, themselves depend upon unpaid labor (Glazer 1984, 1990; Daniels 1987; James

1989). Considering the abundance of labor studies that critique capitalism for its

exploitative effects, the lack of attention given to unpaid labor is ironic. By recognizing

only those who are compensated (no matter how unfairly) scholars allow capitalism to

define work processes and to determine who it is that we consider as workers.

The central contributions of feminist scholars in understanding the caregiving

labor process is that gender often serves as an organizing principal of such labor and that

caregiving labor’s association with love and domesticity hides the underlying work

processes involved (Graham 1983; Ungerson 1990a, 1983;Waerness 1978). Love

shrouded in privacy forms an invisible cloak of sorts, which hides labor, even as it often

times motivates labor’s accomplishment. Thus, while the labor of medical professionals

seems obvious, the labor of family caregivers seems less so – a personal matter – just

what families do when one of their members is sick or in need. Feminists contend that

activities related to caring and nurturing are often seen as the responsibility of women

(Tronto 1993; Kittay 1999;Coltrane 2000; Bittman and Wajcman 2000; Bittman et al

2003) and as something that comes “natural” to them (Cancian and Oliker 2000; Daniels

1987). Although these responsibilities entail large investments of time, energy,

organizational and emotional skills, they remain, for the most part, outside of public

discourse and invisible to society’s recognition of productivity or labor processes

(Daniels 1987; James 1989; DeVault 1991).

Feminist and family scholars contend the reason for this invisibility is rooted in

the ideology of “separate spheres”, which became particularly prominent in the

13

nineteenth century (Padavic and Reskin 2002). At that time, industrialization pulled men

from their homes –then the centers of economic productivity –into factory work

(Coltrane and Galt 2000; Padavic and Reskin 2002). Women were left at home to

assume household duties and care work. Protective labor laws enforced these changes by

setting limits on women’s hours and conditions of employment (Padavic and Reskin

2002). Capitalist markets took over much of women’s former at-home craft and trade

production in commodities such as candles and wool (Coltrane and Galt 2000). The home

changed from a place of productive activity to a place centered on family and childcare.

Popular media of the time propagated this so called “cult of domesticity” by focusing on

the sanctity and virtue of the home and women’s rule over the private sphere (Abel

1991). Under this construction, women could attend to the nurturing of family and create

a “haven” from the outside world. Interestingly, under agrarian society, it was men who

had been conceptualized as the moral leaders of their families and there is evidence that

they assumed much responsibility for house labor and child care through their everyday

work as farmers or artisans (Coltrane and Galt 2000). Moreover, the illusions created by

this ideology denied the social realities of single women, minorities, and working class

families in which family members of both genders were still required to work for pay

(DeVault 1991; Glazer 1993; Coltrane and Galt 2000; Padavic and Reskin 2002).

As seen, industrialization brought with it a marked change in our view of work,

and relegated our measurement of work to economic valuations of paid work. This began

a dichotomous division of labor whereby unpaid work in the “private sphere” was seen as

personal and emotional, and paid work in the “public sphere” was seen as rational and

productive (See Coltrane and Galt 2000; Padavic and Reskin 2002). Economically and

14

culturally the function of “private sphere” work was to support a wage earner who was

then free to enter the “public sphere” market (Kittay 1999). The private sphere work,

itself, however, has not been counted as part of society’s “productive labor” (Folbre

2001). Illich (1981: 14) notes this difference when he describes the domestic labor of

industrial societies as part of the “shadow economy” which functions to compliment paid

wage labor.

Feminists contend the separate spheres construct not only fails to recognize the

enormous contributions made in the private sphere, but also ideologically places “love”

in the home and “labor” in paid jobs (Abel and Nelson 1990; Fisher and Tronto 1990;

Glazer 1993; Cancian 2000). Angus (1994) and Glenn (2000) maintain that the relegation

of emotion and the body to the private sphere denies full citizenship for caregivers who

often forego employment and retirement savings as they spend years in unpaid caregiving

activity. The ideology also denies the fluidity between work and home life (Zelizer

2005), and because it contributes to cultural notions of caring as a “natural” feminine

quality, serves to devalue paid care work in “public sphere” jobs (See Messias 1997; See

England 1992 for a wage analysis of paid jobs considered as “women’s work”).

During the last few decades, developments in the sociology of service work (See

Lopez 2010) point even more strongly towards the need to analyze unpaid labor as part of

labor processes. As service sector jobs became increasingly important a great many

workplace scholars focused attention on the seminal work of Arlie Hochschild (1983) and

her concept of “emotional labor”. Through her study of flight attendants, Hochschild

(1983) concluded that service workers suffered a loss of identity when they were required

by their employers to show emotions they did not feel. She claimed that employer

15

expectations or the enforcement of employer “feeling rules” negatively affected the self-

identity of workers, particularly if the employee performed “deep acting” in order to

comply. To Hochschild, emotions produced in service work were in danger of becoming

commodified and producing harmful employee effects such as alienation. Emotional

labor had particular salience for women due to deep cultural expectations that they be

“nice” and able to control their emotions. Women flight attendants also had a weaker

“status shield” than men and were expected to shoulder more customer complaints and

abuse.

There have been numerous critiques of Hochschild’s theory in various service

jobs. These studies generally find that Hochschild’s depiction, while having relevance,

does not consider the complexity of employees’ coping mechanisms, their enjoyment of

the work, how work positively affects self identity (Tolich 1993; Bolton and Boyd 2003)

or the organization of the workplace in managing emotional labor (Lopez 2006). For

example, in his study of nurse’s aides in three nursing homes, Lopez finds that

workplaces that were managed under a model of “organized emotional care” provided an

environment that emphasized the importance of staff/patient relationships. Rather than

trying to impose “feeling rules” as Hochschild maintained, a nursing home that employed

“organized emotional care” “self-consciously tried to create structural opportunities for

meaningful social relationships between caregivers and clients” (p.4).

It is in the critiques of Hochschild’s theory that lines between “public” and

“private” have been challenged. Bolton (2000) found in her study of British nurses

working in a gynecology unit, that they not only carried out emotional labor as required

by their jobs, but also experienced authentic emotion in their interactions with patients.

16

Nurses employed humor in dealing with patients, felt deep satisfaction in their

caregiving, and often gave extra “gifts” of time. Bolton (2001) finds that nurses are

agents who are able to manage and present their emotions in multiple ways according to

the situation, without sacrificing their identity. She suggests that we study nurses’ work

by combining Hochschild’s concept of emotional labor with the concept of emotion work

as authentic “gifts” to patients (Bolton 2000).

Thus, scholars studying interactive service work have questioned where emotional

boundaries between “private” and “public” stop. Do we treat authentic emotion on the

job as part of the capitalist process or as something inherently private? [See Lopez (2010)

for lively debate between Rich and Bolton on this point.] Is the separation of rationality

and emotion in organizational life desirable, or even possible (Fineman 2000)? According

to Frost et al (2000), humans are emotional beings who experience both pain and

compassion and because of this the separation between public/private is “largely

impossible” (p.27). Despite the rationality assumed in Weber’s “iron cage”, prior work

shows how emotions have penetrated bureaucratic operations and corporate boundaries

have not been as impervious to outside feelings as many administrators would like to

believe.

Moreover, recent workplace scholarship highlights the need to better understand

the effect of unpaid customers/clients/service recipients in the “service triangle” of

interactive service work (Lopez 2010). Leidner (1993) drawing on Glazer (1984)

contends that in order to draw customers into the labor process, organizations try to

routinize work and reduce unpredictability by standardizing customers’ behavior. Her

study of restaurant workers highlights the “work transfer” (Glazer 1984) that takes place

17

when customers perform “voluntary unpaid labor” – such as standing in appropriate lines

and gathering utensils. She maintains that organizations may also try to “reduce

resentment” of service recipients through insisting that workers appear authentic in their

interactions with them, and this may involve standard scripting (p.31). In service work

prone to great variability, organizations delve more deeply into the workers’ lives

through intense training in attempts to transform the employee both on and off the job, as

they try to develop their workers into “the sorts of people who will make decisions the

employers will approve” (p. 37). Given that the context of skilled caregiving poses much

unpredictability in the labor process, understanding the ways in which health care

organizations –or their representatives –draw in unpaid skilled labor –is indeed a fruitful

enterprise for workplace scholarship.

Unpaid Caregiving As Work

Feminists have developed conceptualizations of work that incorporate unpaid as

well as paid labor and their intersection between public and private worlds in a place that

Stacey and Davies (1983, cited in Mayall 1993) refer to as the “intermediate domain”.

Feminists have called attention to daily, unpaid work processes, routinely carried out by

women as they take care of their children and other dependent family members (Abel and

Nelson 1990; Tronto 1993; Kittay 1999). Studies show that women perform most of the

housework (Coltrane 2000; Bittman and Wajcman 2000; Bittman, England, Sayer et al

2003), plan and obtain provisions for their families (DeVault 1991), and maintain social

conversations and kinship ties (Fishman 1992; Di Leonardo 1992).

A number of studies show that women’s unpaid work serves to support public

institutions and is often used to increase organizational functioning (Daniels 1987;

18

DeVault 1991). Socialist feminists contend that “private sphere” activities include social

reproduction which serves to uphold and maintain society –rearing children with a value

system so that they become productive members of society, interfacing family members

with social institutions such as schools, and providing emotional support (James 1989,

1992; Glazer 1993; Lorber 1994).

Feminists have also advocated a broader definition of work, one that takes into

consideration the multiple nature of “non-work” and the processes necessary to carry it

out (Daniels 1987; Smith 1987; DeVault 1991, 1999). Wright (1995), for example, finds

that the rural white women she studied used multiple work strategies –such as reducing

household expenses, as well as bringing in income –to provide economic benefits for

their families. Building upon Ward and Pyle’s (1995) concept of a continuum –that

ranges from unpaid household work, to informal work, to formal work – Wright

advocates that women’s work be conceptualized to include the additional dimensions of

economic benefits, time control, and location of work. Messias et al (1997) draw on

Vroom’s (1964) analysis of motivation and work (which includes non-economic benefits

as one basis for motivation) and Applebaum’s (1984) study of work in non-market and

transitional societies (which shows the communal nature of work, the importance of the

family as a productive unit, and the task rather than time oriented nature of work in such

societies). They contend that women’s work includes multiple properties including

activity and energy, workspace, time (including planning), personal and environmental

resources, results or a product, values (which can be personal or social), and meanings

(which although influenced by society, may hold deep personal significance) (Pp. 312).

Resisting a continuum model because it “echoes the dichotomy of the separate spheres”

19

(Pp. 314) they propose the image of a tapestry as a better conceptualization of women’s

work.

Caregiving has been of central concern to feminist scholars because caregivers are

most often women. Recent survey data from the National Alliance for Caregiving and

AARP show that sixty-six percent of the 65.7 million unpaid caregivers in the United

States are women (NAC/AARP 2009). Women are also more likely to serve as primary

caregivers, generally provide more “hands on” care, and experience more stress in

caregiving than do men (Horowitz 1985; Also see Walker 1995 for a review). In her

analysis of research studies in Canada, Morris (2004: 106) finds that women feel greater

obligations to perform unpaid care work, perform more demanding types of care, and

travel greater distances to perform care. Moreover, although caregiving has both unique

costs and rewards, it is often women who are at an economic disadvantage due to their

caregiving responsibilities (Baldwin and Glendinning 1983; Porterfield 2002;

Wakabayashi and Donato 2006). Women caregivers are less likely to maintain formal

labor market participation (Berecki-Gisolf et al 2008) and when they begin caregiving

early in life, are at an increased disadvantage for poverty later on (Wakabayashi and

Donato 2006).

Feminists have recognized the multiple dimensions of care work in the home.

James (1992) contends that care work involves: “organization” which recognizes a

gendered division of labor, involves negotiating daily care, and may affect the caregivers’

ability to perform paid labor; “physical labor”, which includes housework and physical

care work; and “emotional labor” (discussed in detail later in this chapter). James’ (1992)

description of the multiple nature of care work is also supported by the medical sociology

20

literature. Corbin and Strauss (1988) find that chronic illness involves complex work

processes and creates an illness trajectory, which includes the working relationships of

family, medical professionals and the person who is chronically ill (p. 34). They identify

three major categories of this work: “biographical” – including work related to changed

identity, “illness related” –which involves medical regimens, crises and symptom

management, and “everyday life”-encompassing housework, child care or work in a paid

job (P. 90). Corbin and Strauss demonstrate how these types of work are interrelated and

can have significant effects on the paid and un-paid work patterns and divisions of labor

of family members.

Importantly, in critiquing care work performed at home, James (1992) and

Ungerson (1990b) note that there are significant differences between the work structure

of unpaid family caregivers and professionals who work for a hospital or in other

institutions. Unlike professionals, caregivers do not have workplace protections such as

colleagues to cover while they are ill, social networks, or the possibility for worker

organization (Ungerson 1990b: 24). The division of labor is also vastly different. At

home, one or a few people carry out caregiving work, whereas professionals in

bureaucratic settings have a larger division of labor and set work hours (Ungerson

1990b). According to Ungerson (1990b), this means that the unpaid caregiver has “total

responsibility”, and is “‘on call’ at all times” (1990b: 24).

In short, when caregivers perform skilled nursing labor, they are not working in

environments that have been designed for such a purpose. They are not working with

bureaucratic protections, set work hours, and workplace protections. They do not have

21

professional status with regard to their labor. We know little about the labor process for

them because, as feminists argue, the work is largely “invisible” - a “private matter”.

Undoubtedly the home environment structures the care work that is enacted there.

Through the work of geographers, nursing scholars, medical practitioners and medical

sociologists, we are just beginning to understand more about the home context for

caregivers; and qualitative gerontologists such as Gubrium and Sankar (1990) have

advocated the importance of understanding the social processes in caregiving at home.

Scholars have pointed out that the social meaning of “home” itself has a complex impact

on identity and has multiple meanings (Cuba and Hummon 1993; Williams 2002).

Culturally, the home is endowed with feelings of privacy and security (Allan and Crow

1989; Twigg 1999; Williams 2002) but it is also important to recognize the variable

context of home life. Although “home” is often seen as a place of affection, it can also be

a place of exploitation and abuse (Osmond and Thorne 1993). Moreover, home care may

affect feelings about our ideals of home. Geographers Yantzi and Rosenberg (2008)

found in their study of 11 women caregivers of children with long-term care needs, that

they experienced a disjuncture between the cultural ideal of home life and their daily life

experiences.

We also know that caregivers in general often experience isolation in their labor

(Michelson and Tepperman 2003: 606; See also Boland and Sims 1996). Wiles (2003)

interviewed caregivers of the elderly and found that “caregiving comes to dominate every

experience; corporeal, emotional, social, and spatial (p. 1322).” She finds that caregivers

must deal with restricted mobility and often develop routines both to provide daily

structure and to cope with all the tasks that must be done.

22

We have barely begun to examine the work routines of unpaid family caregivers

doing skilled care. We know that home health care, in general, involves a renegotiation of

existing space, new rituals and a certain amount of trial and error (Albert 1990; Corbin

and Strauss 1990; Twigg 1999). The performance of nursing work at home often brings

in multiple actors such as nurses, therapists and aides which can create new negotiations

for caregivers and also result in a loss of privacy (Murphy 1991; Twigg 1999). In order to

accommodate medical interventions, homes may require modification and equipment

(Corbin and Strauss 1988). The adding of equipment and supplies can violate notions of

order and cleanliness (Angus et al 2005). Glazer (1990) has described a home in which

skilled nursing labor takes place as a “workshop”. But, as opposed to a workshop, or

more importantly, a hospital –a bureaucratic operation designed with medical caregiving

in mind –the home is dynamic, potentially volatile and filled with past relationship

histories, various standards of cleanliness, work patterns, and unique divisions of labor.

Still unanswered are important questions about the extent to which family

caregivers are able to develop workable routines in their incorporation of skilled nursing

procedures to home life. In regards to the specific skills, the work process is very much

like a “job” and shares many features with paid care work in the “public sphere”. Skilled

nursing labor produces expectations of strict schedules and objective standards in the

labor process that are quite different, yet in addition to traditional care work such as

monitoring, tending, and feeding. The nature of domestic time is also structured quite

differently than bureaucratic time (Twigg 2000). Home generally lacks a rigid time

schedule in which tasks have to be performed. Not only do skilled nursing procedures

require a strict time schedule, but caregivers must also deal with a fragmented system in

23

which they are dependent on the bureaucratic time schedules of various professionals or

vendors who deliver equipment, supplies or medicine (Kane 1991).

In understanding how caregivers learn skilled care, it is also important to realize

that the transmission of skills is very different than in traditional family care work.

Feminist research has shown that work performed in the “private sphere” has a multiple

and shifting nature, and is often learned gradually and transmitted informally (Smith

1987; DeVault 1991). Graham (1983: 26) has said that family “caring is …experienced as

an unspecific and unspecifiable kind of labor, the contours of which shift constantly.”

Daniels (1987) contends that women’s skills in the “social construction of daily life” are

learned through their “weaving the fabric together in their friendships, families and work

settings” (Pp. 403, 413). DeVault’s (1991) work on “household caring activity,”

investigates the everyday routines of women as they feed their families, and shows that

much of the provisioning work that women do is unacknowledged by them. Their work is

often passed down informally from mother to daughter, improvised, and worked into

everyday routines.

In James’ (1992) comparison of hospice and care work in the home, she notes that

physical domestic work is often “unspecific” based on familiarity, and is flexible. “The

content of the work varies depending on household interpretations of the standards to be

achieved, the combinations of tasks to be carried out, the division of labour, and the

capabilities of those being cared for…” (1992: 499). She contrasts this with the work of

trained professionals, whose work is based on the medical model of diagnosis and the

relief of symptoms (1992: 491).

24

A significant aspect of the skilled care labor process is that caregivers must

receive specific training in order to perform the technical aspects of the job Skilled home

care involves a variety of training modalities, and we do not know enough about these

variations in training procedures or what they imply for the experience of unpaid skilled

care work. The medical regimens of skilled nursing may be especially intense for

caregivers who have little or no previous medical experience. Caregivers are required to

learn such procedures in a relatively short amount of time. They cannot take advantage

of prolonged and systematic on-the-job training, something that has been shown to be a

valuable part of nurses’ training (See Davies 1995). They also do not have the advantage

of seeing multiple cases from which to gain professional expertise. Do caregivers feel

competent in performing skills? We know little about how caregivers negotiate this kind

of labor, or how nurses instruct them to do so. This is unfortunate because obtaining

knowledge and gaining competency are key elements in the care labor process, and have

been identified as important dimensions of caregivers’ sense of well being (Tronto 1993;

Sörensen et al 2002).

Moreover, we still have only a very basic understanding of the interlocking

relationships that connect waged to nonwaged labor in skilled home health care.

Ethnographic research on paid care workers, such as nurses and nurses’ aides, has

primarily focused on labor processes within institutional settings (Diamond 1992; Foner

1994; Chambliss 1996; Lopez 2004; 2006). Much of this research calls attention to the

challenges of performing caring work while carrying out bureaucratic mandates. Most

scholarship recognizes that in institutional settings, physical work is often prioritized over

emotional care work (See for example James 1992.) Scholars have noted the strain that

25

occurs within the nursing profession between values of caring and bureaucracy (Davies

1995).

Although nurses see emotional caring as part of their job and their professional

identity, it often goes unrecognized and is seen as something that comes “naturally” to

women (See Bolton 2000 for a discussion of the literature). Davies (1995) contends that

Graham’s fusion of love and labor for kin also applies to nurses. Citing Daniels’ (1987)

on the often invisible work of women as they are “making community” and thinking

about the needs of others, she maintains that it is hard for nurses to put into words what

this invisible type of care involves. Nurses conceive of their skills as much more than just

technical, and must incorporate the emotional needs of their patients and caregivers with

their own needs to complete work.

Yet research has also shown that nurses in institutional settings are often caught

between their need to perform physical tasks and their interactions with family caregivers

who are sometimes seen as demanding, slowing down work or challenging nurses’

control over labor processes (Brannon 1994, Allen 2000). We still know little about the

working relationship between caregivers and home health nurses and how home health

nurses use their existing skills to teach and supervise complex tasks in multiple and

varied private settings. The context of home care imposes unique limitations on nurses

and their interactions with caregivers. Moreover, while the organization of nurses’ work

itself may allow for some detachment through standard shifts and professional status,

nurses are on caregiver’s turf, and their work environment is bounded by the pre-existing

relationships and the dynamics of the home.

26

To date, only a few studies have addressed the implications of home health

nursing to the caregiver/nurse labor process (Stone 1999; Ward-Griffin and Marshall

2003). Most work in home health has related to home health aides (Eustis and Fisher

1991; Aronson and Neysmith 1996; Piercy and Dunkley 2004) This research shows that,

particularly in light of cost cutting measures, home health agencies also prioritize

physical tasks (Aronson and Neysmith 1996) and aides’ status as low wage earners

causes the potential for exploitation (Eustis and Fisher 1991). Aides may feel deep moral

responsibilities to perform extra work (Aronson and Neysmith 1996); but strict rules

mandated by legislation, credentialing processes, and payer sources such as Medicaid,

Medicare and private insurance, often forbid them from performing skilled nursing care,

and can cause them to struggle between what they know the patient needs and what they

are allowed to do (Stone 1999; Stacy 2005).

While research on the labor processes of at-home skilled nursing has been sparse,

we know that in an age of cost cutting, nurses are allowed less time to teach and must

carefully document their visits in order to be reimbursed by third party payers (Stone

1999) (See discussion in Chapter 3). Moreover, nursing scholars and medical

sociologists, primarily in Canada, have begun to investigate some of the social processes

in skilled home health care (See Ward-Griffin and Marshall 2003; Lehoux et al 2004.)

Lehoux and colleagues’ (2004) study of 16 patients and 6 caregivers who were on four

types of skilled therapies revealed that there was a disjuncture between “how technology

was used versus how it was supposed to be used” (p. 617). They found that patients were

ambivalent about the role of technology, which gave them autonomy, but also had

27

restrictions. Their examination of 26 patient manuals also revealed that the manuals

greatly underplayed how much the patients were affected by the technology.

Taking a socialist feminist stance and following Glazer (1990), Ward-Griffin and

Marshall (2002) studied 23 Canadian caregivers who care for frail elderly care recipients

and their home health nurses. They found that over time, skilled labor was gradually

transferred to the caregivers due to “perceived caregiver receptivity and competence,

active negotiation strategies used by nurses, and minimal caregiver resistance” (p. 198).

For skilled nursing procedures, nurses “downplayed the complexity or the technical

aspects of the skills” or insisted the caregivers were “smart enough to learn” (p. 198-199).

Some caregivers, however refused to learn the labor, and not all nurses agreed with the

transferring of skilled care, deciding instead to make the transfer more gradually. The

authors concluded that nurses acted as “ideological workers” and their influence came

from “covert forms of power, particularly at the ideological level” - regarding caring as

naturally female and a part of family obligations (p. 201). They caution that their study

follows a social feminist focus, which has been criticized for demonstrating women’s

oppression without considering their agency or resistance strategies (p. 204). While this

study is extremely useful in understanding more about how skills are taught, it was

conducted exclusively on caregivers of the elderly, and as the authors concede, a focus on

caregivers’ oppression ignores the unique dynamics in caregiving as well as how

caregivers and nurses conceptualize their own labor.

Certainly the emotional component of care work in the skilled home health labor

process is an extremely relevant and underdeveloped topic. While not addressing

specifically the labor processes in skilled medical labor, feminists have emphasized the

28

need to examine lived experience and have paid attention to the emotional components of

caregiving at home. Feminists have explored the emotional components of caring for the

elderly (Abel 1991; Aronson 1992; Mac Rae 1998), the emotional strain of insufficient

resources when caring for a disabled spouse (Oliver 1983) and how mothers of children

with medical and emotional problems have deep feelings about their need to give up paid

employment (Scott 2010). A foundational study is Abel’s 1991 examination of adult

daughters who care for their elderly parents who have Alzheimer’s disease. Abel finds

that caregivers’ perspectives are intimately bound up in their relationship with their

parents. They view tasks not as chores but as part of their overall responsibility in

fostering their parents’ dignity (1991: 61). Skeptical of largely quantitative studies that

focus only on caregiver stress and burden, Abel makes the case that caregiving is a

multifaceted activity which encompasses both costs and rewards.

Clearly, caregivers’ feelings are central to the meaning they attach to their work.

Feminist and family scholars have advocated the need to give greater attention to

Hochschild’s (1983) concept of “emotion work” in the home (Daniels 1987; James 1989;

DeVault 1999; Coltrane 2000). Importantly, Hochschild claims that, although at home

one expects to be free of “feeling rules” [which tell what we should or should not feel in a

social situation (p. 57)], the family has unique emotional obligations that may be

particularly intense due to close personal bonds (1983: 68-69). Some scholars have begun

to use this concept to understand relationships in the home, as well as caregiver

experiences (Erickson 1993; Mac Rae 1998).

Mac Rae (1998) uses a symbolic interactionist approach and through analysis of

her own interviews, as well as the data collected by Abel (1991), finds that spousal and

29

child caregivers of persons with Alzheimer’s disease perform intense emotion work. Mac

Rae demonstrates the difficulty of caregiving for Alzheimer’s patients who suffer from

cognitive impairment, and the feelings of anger, frustration, fear, anxiety and sadness on

the part of caregivers. Mac Rae’s work shows how caregivers are aware of society’s

“feeling rules” regarding how they should feel in their care work. Failure to adequately

manage their emotions such as experiencing feelings of resentment, shame or guilt,

negatively affects their sense of self.

James argues that domestic emotional labor is a skilled, learned process, which

“contributes to social production” and is “hard work” (1989:27). She describes emotional

labor as “dealing with other people’s feelings, a core component of which is the

regulation of emotions” (1989: 15). According to James, “emotional labor can be as

exhausting as physical labor. Sitting with a distressed person (child, friend, relative)

listening to someone when they are angry, courageous, resentful or sad, and acquiring the

ability just to ‘be’ with someone who is lonely, freighted or in pain, is taxing and requires

an appropriate response”(1989: 27). James (1989) portrays emotion work as one of the

most under appreciated aspects of labor in the home, and contends that it involves

flexibility around family members needs, including understanding those needs, providing

a personal response, "juggling” the needs and being able to “pace the work, taking into

account other responsibilities”(1989: 26).

Moreover, current research in caregiving, as well as the sociology of work,

confirms that emotional bonds are important in framing caregivers’ interpretations of

health care processes. Bowers (1990) found that caregivers of the elderly in nursing

homes gave “protective care” such as letting staff know how to perform specific tasks or

30

talking to staff about their loved ones’ unique personalities. Foner’s work in a nursing

home indicated that relatives have a “sense of urgency” in making sure their loved ones

needs are attended to (1994: 113) (See also Lindhardt et al 2006.). These studies

demonstrate the emotional investment that caregivers often have in care recipients.

The performance of skilled procedures, however, means that caregivers go from

protectors to performers of care. This may produce increased anxiety and caregivers may

worry about inflicting pain or causing harm to their loved ones as they administer skilled

nursing procedures (See Kohrman 1991). Moreover, because caregivers are not in a

position of professionalism, they are not acting within standards, which may allow for a

certain amount of professional distancing (See Chambliss 1996). They are not in an

environment typically associated with the day-to-day performance of medical care, thus

they may lack important cultural supports for their labor. How do they deal with the labor

they perform?

And what of the emotional labor of home health nurses? Chambliss (1996) shows

how nurses in a hospital get used to a “routinization of disaster” in which illness and even

death become commonplace. In such an environment, the organization of work itself, as

well as work culture, allows for a certain amount of detachment. Yet scholars such as

Bolton (2000; 2001) also portray nurses in institutions as “jugglers” of feelings and as

able to have authentic relationships with patients. How does the context of home care

shape the emotional labor of nurses and how is their emotional labor important to the

transfer of skills?

31

The Chapters Ahead

Skilled caregiving labor is in many ways, like paid work. Caregivers must take on

the skilled labor –which is far different from traditional housework, or caring work. They

must commit to time constraints and objective standards. They must receive special

training. They must work with medical professionals in order to carry out their labor.

Like much service work, their labor has both emotional and physical components. This

study seeks to understand the labor processes involved in skilled home health care

through an understanding of the experiences and perceptions of caregivers who have

performed such labor, as well as registered nurses who teach it.

Chapter 2 “What Do Home Caregivers Do?” describes the skilled procedures that

caregivers perform at home, drawing on caregivers’ own descriptions of the labor. These

procedures are often incredibly complex with inherent risks, and potential for

complications. The chapter also shows the extensive credentialing and education

requirements necessary in order for professional nurses to practice these skills. Chapter

3, “Caregivers in a Fragmented System” discusses the wide variation in caregivers’

ability and willingness to perform skilled care. The changing role of home health and the

current medical system, however, leave few other alternatives besides hospitalization or

institutionalization. Caregivers must also deal with a fragmented payer system, which can

be extremely confusing. Caregivers often need information and assistance in order to

navigate the system effectively.

Chapter 4 “Nurses’ Labor: Skills Transfer, Identity and Emotion” explores

nurses’ emotional labor in teaching the skills. Nurses say they prioritize patient care and

believe that home health allows them to see patients in a “holistic” manner. They

32

experience satisfaction that their teaching allows families to become independent. They

often enjoy an increased sense of professionalism and autonomy in their work. Chapter 5,

“On the Job Training” shows that there is wide variability in both the quality and quantity

of training caregivers receive in the hospital and that caregivers’ in-hospital experiences

often significantly impact their initial confidence levels as well as shape their

expectations upon discharge. Home health nurses must understand and manage these

expectations in order to assess whether caregivers are “willing and able” to perform the

care. Chapter 6, “Am I Doing This Right?: The Weight of Responsibility” explores the

tremendous responsibility caregivers often feel in making sure they are doing things

right. This feeling of responsibility is heightened by caregivers’ inability to draw on

professional experience in evaluating their labor –especially in situations that call for

judgment or in which they make mistakes. Caregivers often undergo intense self-

evaluation processes, perform extensive monitoring of care recipients, and work hard to

negotiate bureaucracies and institutions to receive the resources they need. Chapter 7,

“Integrating Caregiving Labor with Life” illuminates the variability in home life itself

and shows how relationships, activities and multiple responsibilities such as paid work,

housework, and parenting, must be integrated with skilled care. Interviews with nurses

reiterate this variability and highlight how family dynamics, as well as the physical

resources of the home play prominently in the ability of families to perform skilled

medical work. Nurses say they must improvise depending on the particular household,

and often perform “extra work” in response to the needs they observe.

Chapter 8: “‘You Do What You Gotta Do’: Identity and Emotion in Skilled

Caregiving” explores how caregivers feel about the labor they perform, and reveals the

33

dynamic emotional processes that take place. While caregivers have feelings of worry

and anxiety, it is their relationship with the care receiver that compels them to “do what

they have to do”. General feelings against institutionalization also play prominently in

their motivation to execute the labor. Examining emotional labor allows us to see that

skilled home health labor processes are accomplished because caregivers –as well as

nurses –focus primarily on the welfare of care recipients.

34

Chapter 2: What do Home Caregivers Do?

Well they had a plug over it, which was basically a voice box so he could – it blocked the

air so he could talk… We had to take that off and shove a tube, probably a six inch tube

down in there, and cover a hole and let it suck it out as we moved it around to knock

some other stuff loose… And then pull it back out. And the mucus and stuff was always

stuck to the outside of the tube and you always had to have gloves on of course, cause

you didn’t want to put an infection directly in there… It went into a machine that had a

canister that you had to clean the canister out and it always had to be carried with you. It

was always with you. When we left the hospital they said there’s three things that you

have to have with you at all times. The suction bag, which (is) very heavy, an Ambu-bag

which is basically a rescuer, (you) put…either over their mouth or over their trach and

then they can breathe…And … saline, which you could put down in there and break up

the stuff in his chest…

-Phoebe, caregiver describing tracheostomy (trach) care

Through my own experiences of administering intravenous antibiotics (IVs), I

wanted to know more about what kinds of nursing skills other caregivers perform at

home. As I began talking with them, I was amazed at the enormous variety of medical

tasks they execute. In a hospital or care facility, a licensed nurse or other medical

professional would perform these procedures. In this chapter, I first discuss some of the

issues with performing skilled procedures at home. Next I describe the major procedures

as well as some of their potential complications and risks. I draw on descriptions of the

procedures as told by the caregivers, themselves. Finally, in order to understand and

appreciate the qualifications normally required for licensure, I give a give a brief

background of the education and credentialing requirements for nurses.

35

Issues in Providing Care at Home

In learning how to care for their loved ones, caregivers often learn procedures that

are strange to them. Moreover, the medical procedures, themselves, can cause trepidation

due to their impact on health and the possible complications that can occur. Caregivers

may have great fear they will hurt their loved ones, especially when performing skills

initially. One caregiver who had learned to suction her son “deep into his throat” showed

me what the suction catheter looked like and told me how she had to don gloves in order

to do the procedure. She worried about his discomfort during the process stating, “I

would think that would be uncomfortable when you stick it into his throat so... I try not to

put it in too deep.” Another caregiver who had to learn to give her son injections noted,

“He was black and blue from all these people (in the hospital) just shooting him.” When

she had to take over and do the shots herself she felt badly about it, stating, “It hurts you

to hurt them.”

Coupled with issues of anxiety and fear of hurting the care recipient, are issues of

manual dexterity and “getting the feel” of the procedure One caregiver, who had to push

a 30 cc syringe, told me that because the syringe was so big, it was hard to “have my

thumb up there ready” and still guide it properly. Moreover, in carrying out medical

procedures, many caregivers lack appropriate context, particularly if they have had little

or no prior medical training. Speaking to the quick manner in which she learned, as well

as her worry over the possible health consequences of the procedures she performed, one

caregiver stated:

You gotta show me, and you gotta show me more than once. I mean I gotta do it

two or three times you know before –and then I’m never sure. Especially with this

36

type thing, you know? Because you’re dealing with somebody’s health…I

mean…that was my biggest worry.

Notably, not only do caregivers have to overcome fear, get the feel of procedures,

and make sure procedures are done correctly, they also have to overcome personal

discomfort they may have regarding the intimate nature of the body. Some caregivers

were squeamish about seeing body cavities, body fluids, or wounds. While personal

propensities of this nature vary, the fact that the care recipient is a loved one no doubt

further affects this process. One caregiver recounts the first time the doctor explained the

procedures for taking care of his nephew’s wound and g tube:

I can recall so vividly the doctor with his…plastic gloves on, inserting his fingers

into the body cavity there…and I’m seeing this and I’m, yes, conjuring up the

thought…‘What am I getting myself into?’ And (sighs heavily)…that thought will

never leave me.

Some caregivers were placed into positions they had not thought of being in.

Some had to bathe or diaper loved ones, perform bowel routines, or catheterizations.

Several confided that this was not an easy process for them, but they knew it was

necessary for the health of their loved ones, and so they did it. Caregivers also had to deal

with sights and smells they were unaccustomed to, referring to some labor processes as

“gross” or “yucky”. One caregiver described wound tissue as smelling “just like a dead

animal.” Another caregiver, who performed wound care for her husband after his feet

were amputated, said the worst part was watching him struggle as his feet deteriorated

before the surgery. She said she “tries not to dwell on it” seeing his feet “the way they

were”. “When you see somebody’s foot rotting off, and he won’t give up, you know…I

hate to get graphic, but that’s just the way it was…it was just terrible.” Indeed, seeing

loved ones in pain, or having to dress their wounds is a reality many caregivers had to

37

face. As one caregiver stated, “It’s just something that you don’t get over real fast…It’s

just something you never thought you’d see…It was an emotional time I’ll tell you that.”

Several caregivers also said that they tried to keep care recipients calm during

procedures. One caregiver, who took care of his wife, tells me about the time he

discovered problems with her foot:

In April and May, she had a sore toe; and she wanted me to put some ointment on

that in the mornings. And I was doing that. And this one morning at the end of

May, the ointment was not on her dressing table. It was on the vanity in the

bathroom. So I walked around the bottom of the bed to go to the –and I looked at

her. And I saw the bottom of that foot had a green and black area on it which was

terrible looking! …And I said, ‘you need more than ointment on that foot. You’ve

got a real problem.’ She’s very squeamish about some things –blood …and

things going on in her body –so I knew not to really go into detail. But we went to

the ER as soon as we could get her clothes on… The ER called in the foot

surgeon, and they admitted her then… and, so the day after…she went into

surgery and had her foot operated on.

Here, the caregiver had to process this new and potentially unnerving sight and then

attempt to not “really go into detail” because he didn’t want his wife to be worried.

Of course, reactions to the body and feelings about carrying out medical labor

vary in individuals. For the most part, this caregiver said he was able to perform his

wife’s wound care and other medical procedures without letting his feelings about the

body bother him because he knew it was simply something that needed to be done:

…I’m an engineer at heart… And so…well it’s a matter of fact thing. You know?

It…wasn’t an issue of being afraid to do it. It was just I knew what to do –and we

do it.

Several caregivers, however, expressed that performing skilled nursing was not a natural

propensity for them, and was something they had to struggle with:

If someone would have told me two or three years ago…that I would have been

doing this stuff, I would have told them, ‘No way’.

38

Once caregiver who had to give IVs to her child described her feelings when leaving the

hospital:

It was pretty nerve-wracking cause you go home feeling that this is a nursing

job…and I’m –I’m not a nurse. You know?

Thus, caregivers sometimes expressed that were initially wary of performing

procedures for which they did not have formal qualifications. Indeed, the home health

nurses I interviewed told me that a big part of their job is teaching people who may have

very high anxiety levels. One nurse said that for these caregivers, “You…try to make

everything as calm as possible.” Many nurses expressed great for empathy for caregivers

who, due largely to insurance limits (See Chapter 3), had to learn procedures quickly.

One nurse said, “I’ve seen them in tears or ‘What am I going to do? I can’t do this on my

own. I’m trying the best I can, I just don’t understand it.’” In this situation the nurse said

she tries to encourage them and “build them up”:

‘I know this is difficult and I know you’re scared to do it. But if we sit down and

we talk about it and I write everything down for you, and I watch you a couple of

times, I know that you can do this.’

What Caregivers Do

What specific procedures do caregivers perform at home? In order to describe the

procedures, I rely primarily on definitions of “skilled nursing care” in federally funded

Medicare regulations on home care. Medicare defines “skilled nursing care” as “a level

of care that includes services that can only be performed safely and correctly by a

licensed nurse (either a registered nurse or a licensed practical nurse)” (Medicare 2011).

Examples of skilled care for the Medicare home health component include: “Giving IV

drugs, shots, or tube feedings; changing dressings; and teaching about prescription drugs

39

or diabetes care” (CMS 2010b: 8). (It is important to note that although I generally rely

on Medicare definitions, the procedures government agencies consider as “skilled”

reimbursable procedures may change throughout time and may vary by state laws. For

example, as discussed in Chapter 3, in order to control costs, Medicare no longer

considers blood draws in the home as skilled reimbursable procedures, unless they are

performed in conjunction with other skilled procedures, and many patients must now go

to labs to have blood drawn. I adopt a view of reason that caregivers who are performing

blood draws at home –as indeed one caregiver in this study is doing –are performing

“skilled care” even though a home health nurse would not be reimbursed for this

procedure unless performed in connection with another skilled procedure.)

The types of skilled nursing care that caregivers administer today are

fundamentally determined by the particular medical situation or disease process and the

decisions made by medical professionals – hopefully in consultation with both care

recipients and caregivers. The types of at-home skilled nursing procedures vary greatly.

Care recipients may have acute needs, post-operative needs, chronic illnesses to manage,

or impaired mobility. For example, care recipients who require surgery may need post

operative wound care or those who are unable to maintain adequate nutrition by mouth

may require a feeding tube. Often, caregivers perform multiple procedures. The

caregivers in this study have performed the following types of care:

40

Skilled Care Procedures Number of

Caregivers

Performing

Intravenous Therapy including intravenous

antibiotics (IVs) and total parenteral nutrition

(TPN)

12

Feeding tubes, gastrostomy tubes or nasogastric

tubes

11

Urinary Catheter Care 8

Wound care and drains, pressure wounds 7

Ostomy care 2

Bowel programs 6

Tracheostomy (trach) care 6

Ventilator care 2

Operation of other machines:

Suction catheters/machines 7

Cough Assist Machines 3

CPAP, bilevel pressure device (BiPAP®) 4

Injections 5

Other (for example pump implants) 5

Table 1. Types of Skilled Care

Caregivers also perform many other procedures associated with respiratory or

physical therapy such as administering breathing treatments and chest physical therapy,

performing physical therapy or range of motion exercises, and –for care recipients with

mobility issues – transporting, lifting, or using machinery such as a hoyer lift for such

purposes. Nine caregivers learned transport techniques and five used hoyer lifts or other

electric lifts. Caregivers also monitor and assess care receivers’ condition which often

involves intense observation and decision making – including watching for health

changes or seizures, taking vital signs, drawing blood for testing purposes, and making

measurements – for example of wound width and depth.

41

The duration, scope and intensity of skilled nursing procedures vary according to

the nature of the particular procedure and the care recipients’ needs. Some procedures

need to be performed multiple times within a day, or within an hour. Using a suction

machine to suction mucus or salvia from a person who is having difficulty swallowing or

breathing for example, may need to be done dozens of times a day, particularly if he or

she is acutely ill. Some procedures need to be performed at night, such as running

antibiotics or turning a person with impaired mobility. These may involve setting alarm

clocks or altering sleep patterns. Changes in procedures can also occur as care recipients

experience further complications or improvements in health. Some may no longer need

certain procedures. Others are eventually able to perform some or all of the procedures

themselves, while some, due to cognitive or physical impairments, are not.

Though it is beyond the scope of this book to discuss all the procedures performed

in home care, next I give a brief overview of some of the nursing skills learned by the

caregivers I interviewed. This overview is intended for descriptive purposes only, and is

not meant to endorse any particular procedure or protocol, nor should it be referred to as

medical advice in the diagnosis or treatment of any medical disease or condition. [For a

comprehensive summary of the nursing procedures in home care and their application see

Rice (2006)].

Intravenous Therapies (IVs) are used to administer medicines through the veins

(Adams and Rice 2006). A wide range of intravenous (IV) therapy is now performed in

homes including IV antibiotics, total parenteral nutrition (TPN), chemotherapy, and

medicines for pain control (Smith and Rothkopf 1992). Medicines are generally

administered through chronic intravenous central lines placed in the body. A common

42

one for home care, and one I have worked with, is called a PICC (peripherally inserted

central catheter) line, which is inserted into a vein in the arm and fed up to the superior

vena cava – a large vein in the chest. PICC lines may stay in place for up to six to eight

weeks (Adams and Rice 2006). Central venous catheters (CVCs), such as Hickman-

Broviac catheters or Groshong catheters, as well as implanted ports are also used for IVs

(Adams and Rice 2006).

IV antibiotics require strict regimens and it is important to make sure drugs are

administered at the proper time. Although the dosage and number of treatments per day

depend on the treatment plan, antibiotics are traditionally hung on IV poles and dripped,

or administered through the use of a mechanical pump. New portable pumps small

enough for care recipients to carry are now used in home care. One caregiver described

such a pump as “about the size of a tissue box.” New systems are also available, such as

the Homepump Eclipse ® Infusion System. In this system, antibiotics come in preloaded

balls – about the size and shape of a baseball –and automatically deflate, dispensing the

medicine over time (I-Flow 2011 CK). An advantage of these devices is the portability

and not having to program a pump, but they must be monitored closely as there will be no

bell or signal when the dose is finished. A caregiver I interviewed echoed an experience I

had –when she came back to check on the dosing, the ball had not deflated because she

had forgotten to unclamp the line.

There is a lot of preparation in giving IVs, besides the actual drug administration.

Antibiotics sometimes need to be stored in the refrigerator and then taken out before use.

A number of caregivers talked about the need to set alarms early in the morning in order

to set the medicine out of the refrigerator so it could come to room temperature before

43

they administered the morning dose. They often had to awaken extremely early and stay

up late in order to give the doses on time. This can be extremely difficult, especially if

only one caregiver is available. Sometimes IVs come in powder form and must be mixed

in a solution before they are administered. Based on my own experience and discussions

with two caregivers, this takes a great deal of manual dexterity and precision to insure the

drug is mixed correctly.

As I discussed in Chapter 1, the formula for administering antibiotics is generally

“SASH” – saline, antibiotic, saline, heparin – or a close derivative. Depending on the

system in place, some of the antibiotic may need to be flushed through the tubing in order

to clear air from the line before it is administered. In a PICC line, it is necessary to

unclamp the line coming from the catheter before administering medication. Generally

saline is injected first from a syringe. New needleless systems allow the saline,

antibiotics, and heparin to be screwed into the catheter rather than injected through

needles. (Speaking from personal experience, the act of screwing and lightly pushing in

takes a little getting used to. If screwed in too tightly, syringes and antibiotics may be

hard to remove, yet not placing in firmly enough can result in loss of some of the drug).

After the saline is injected, the line is then clamped back before the saline syringe is

unscrewed and pulled out. Next, the line is again unclamped and the antibiotic is given.

The process is repeated for the saline and heparin – (the heparin is also generally given

via a syringe). Depending on the type of catheter and the length of the treatment, dressing

changes may be needed. PICC line dressings are usually changed once a week and are

considered a sterile procedure. For most of the caregivers I interviewed, a home health

nurse comes back to change the dressing.

44

As with other skilled procedures, if performed in a hospital, a registered nurse

administers IV medications. Manual dexterity as well as planning, organization and

monitoring are extremely important (See Smith and Rothkopf 1992). A crucial part of IV

care is making sure that all materials are clean and remain uncontaminated All catheter

sites must be kept sterile and monitored for signs of infection. If equipment becomes

contaminated, care receivers can experience symptoms such as chills, nausea and

vomiting (Adams and Rice 2006: 396). A number of other complications can result from

IVs such as adverse reactions due to allergies (Smith and Rothkopf 1992), possible blood

collection and bruising at the insertion site which can inhibit flushing of the catheter

(Adams and Rice 2006: 394), and site infection which can cause redness or swelling

(Adams and Rice 2006: 395). Other complications include circulatory overload, which

occurs when too much fluid has been infused. This can cause dizziness, coughing or rapid

pulse (Adams and Rice 2006: 396). Air embolism, or air in the blood stream, can cause

anxiety, shortness of breath and even loss of consciousness –it is a medical emergency

and requires that an ambulance be called (Adams and Rice 2006: 396). If the catheter

should suddenly become severed, the line must be immediately clamped and the home

care nurse or physician called (Adams and Rice 2006:396).

One caregiver had an experience where she remembered “really freaking out”

because her child had a PICC line, and was running outside. “She fell, and it broke

apart.” She called medical personnel who thankfully responded and repaired the problem.

The fact that the PICC was placed in the superior vena cava was a concern to some of the

caregivers who worried about potential complications. Based on discussions with nurses,

caregivers are often extremely intimidated about giving IVs. Many of the caregivers I

45

interviewed worried about doing something wrong such as contaminating the IV site or

shooting air in the line.

Total parenteral nutrition (TPN) is another time of intravenous therapy. It

involves providing nutrition to individuals who are unable to effectively use their

gastrointestinal tract (Jaudes 1991). Reliance on TPN can stem from a variety of illnesses

or conditions that affect the bowels such as Crohn’s disease, short-bowel syndrome

(which is often due to intestinal resection), cancer, or ulcerative colitis (Beers and

Berkow 1997; Adams and Rice 2006). In TPN, nutrition is given directly into the blood

stream through a central line catheter (Jaudes 1991). As with many antibiotics, TPN

solutions are refrigerated and taken out ahead of time before they are used, in order to

prevent complications (Adams and Rice 2006: 401).

There is a great deal of planning and organization in the administration of TPN.

The procedures must be done correctly and on time in order to provide nutrition, which is

vital for life. TPN solutions are usually dispensed over ten or more hours by use of a

mechanical pump (Jaudes 1991; Adams and Rice 2006). According to nursing scholars,

the rate of flow for the solution is important and should not be radically changed because

this could lead to possible complications (Adams and Rice 2006: 401). Blood levels are

drawn weekly or according to doctors’ orders, in order to monitor important indicators

such as electrolyte levels and blood glucose (Jaudes 1991; Adams and Rice 2006: 400).

According to Adams and Rice (2006: 401), tubing must be changed every twenty-four

hours and “strict aseptic tubing standards must be met”. Changing the central line

dressing and the cap on the central line is a sterile procedure, which, according to one

caregiver I interviewed, occurs every week. This caregiver not only performed sterile

46

procedures but also drew up the blood work so that doctors could monitor important

levels.

There are many serious compilations that can occur in TPN. Caregivers worry

most about sepsis, which may occur when a bacterial or fungal infection from the

catheter is spread to the bloodstream (Okun 1995). A caregiver I interviewed told me that

sepsis is her main fear and that she must be diligent to make sure to not only keep

everything sterile, but also to monitor for any signs of infection. According to her, “The

stress of it is, the central line can kill him. If he gets sepsis …any episode can kill him.”

If infections do occur, care receivers likely will be treated with IV antibiotics and

hospitalized. According to Okun (1995), other complications include fracture of the

catheter, and blood loss or hypoglycemia if the TPN solution accidentally becomes

disconnected from the catheter. Some care recipients who are on TPN also have G-tubes

to help with nutrition.

Gastrostomy tubes (G-tubes) and nasogastric tubes (NG- tubes). Gastrostomy

tubes (g tubes) provide surgical access to the stomach for feeding or drainage. Here, Bill

describes procedures he performed while maintaining a g-tube that was used for drainage:

Maintaining …cleanliness for the…open wound, a g tube that came off into a bag,

that needed to be emptied if it filled, monitored. It was like a …a collection pouch

bag at the end of the…g tube, … which had a clamp on it, and it was a matter of

taking the clamp off the tube … spring release clamp and so…so the bag came

off and then could be emptied into an … empty container, milk jug, or a urine

bottle. And then…we kept track. We kept measure… not an exact measure, but

we kept measure about what the outflow was and then that, that body fluid was

emptied into the toilet in the bathroom. The bag then was sanitized and

reattached…

G tubes and NG (nasogastric) tubes are often used to place nutrition directly into

the gastrointestinal tract, and when used in this manner they are often referred to as

47

“feeding tubes” (Adams and Rice 2006; Jaudes 1991: 31). Some care receivers require

these when they have chronic nutrition needs. Newer G-tubes may be either “catheter

types” or “buttons” (Ahmann and Gebus 1996). While g-tubes are surgically placed into

the stomach (Jaudes 1991), NG tubes are fed through the nose down into the stomach

each time they are used. Though they are most often used when feeding needs are of

short duration, they are also considered acceptable for long-term use (Jaudes 1991;

Ahmann and Gebus 1996).

Usually caregivers must deliver premixed nutritional formula into the feeding

tube, but other liquid, including medicine, may also be given. Formula can be delivered

through a special gravity feeding set, which is attached to an IV pole (Ahmann and Gebus

1996: 138). Finally, an enteral (meaning “into the digestive system”) feeding pump may

be used (Adams and Rice 2006: 385). The enteral pump dispenses the formula slowly

over time (Ahmann and Gebus 1996). For example, several of the caregivers I

interviewed set up the pumps and allowed them to run overnight. Sometimes caregivers

also gave formula directly via a syringe. This is called bolus feeding and usually takes

about twenty minutes or so to complete (Ahmann and Gebus 1996).

An NG (nasogastric) tube can be quite tricky because caregivers must learn how

to insert the tube into the care receiver’s nose and check for proper placement in the

stomach. Cheryl had a hard time getting the feel of placing an NG tube in her child.

It took me a while to figure out. I mean she (the home health nurse who taught

her) had the patience of a saint. Cause when you start to inch the tube in the nose,

it…meets a significant amount of resistance. And…even though she’s (my

child’s) swallowing, you have to get it…you have to push straight back. I always

thought you kind of would like have to curve it… but it’s a straight back motion.

Took me a while to get…how that was. …But she had patience and so I got it past

that rough spot. (My child’s) swallowing the water. The tube goes all the way

48

down. It’s marked…on the tube. So when you get that little marked tube to the

edge of her nose, you know you’ve gone far enough.

Cheryl’s experience shows how procedures are often strange, even counter-

intuitive, at first. Not only did she have to get past her initial fears, she had to get the feel

of the procedure and learn to get the tube past the point of resistance. She also said she

had to make sure the procedure was performed quickly in order to reduce discomfort in

her child:

It very quickly goes through and you just keep shoving –trying to do this kind of

motion…shove-shove-shove-shove … –you wanna do this fast… –you want to …

get it over with... So you keep pushing until you get to that mark…you know by

the edge of her nose? …Then… you use tagaderm and you tape it to her face.

After an NG tube is placed, it is necessary to check for proper placement in the

stomach. One way to do this is to place a stethoscope over the stomach and to quickly

inject a small amount of air into the tube then listen for a popping sound (Ahmann and

Gebus 1996). This is an important step because tubes that are improperly placed can

cause aspiration (Ahmann and Gebus 1996).

Cheryl: Then the next step is to know –did you put it down the esophagus or the

trachea? …So what you do then is you put on a stethoscope…and you lay the

stethoscope on the stomach… And then you shoot air into the tube and if its in the

stomach it’s gonna go, ‘blumb-blumb, blumb-blumb.’ You’ll hear it through the

stethoscope because you’re mixing the stomach contents with the air.

Interviewer: So you hear the noise if it’s in the stomach?

Cheryl: (Nods.)

Interviewer: Okay.

Cheryl: If you don’t hear anything, that’s not good. I’ve never put it down the

trachea. I’ve never… I don’t know if she would have … would choke more you

know? But every single time the tube is placed it must be…confirmed with the

stethoscope and the pushing of the air. Every time.

49

The caregivers I interviewed learned how to administer feedings, operate the

pumps and clean the tubes. Sometimes the clogging of G tubes was a problem and one

caregiver said a nurse recommended flushing the tube with soda. Caregivers must also

monitor G-tube sites for irritation or seepage and make sure the area is kept clean. Both G

tubes and NG tubes must be correctly administered and monitored. Incorrect feeding tube

procedures can cause cramping, diarrhea, constipation, vomiting, aspiration, pneumonia,

and possibly even death (Ahmann and Gebus 1996; Adams and Rice 2006).

Urinary Catheters. Several of the caregivers I interviewed had a great deal of

experience with urinary catheters. The purpose of a catheter is to drain urine from the

bladder (USNLM 2011a) and they are used for people who have urinary incontinence due

to a wide variety of causes including bladder infections or obstructions, spinal cord

injury, or illnesses such as multiple sclerosis. [Houston 2006: 289; U.S. National Library

of Medicine (USNLM) 2011a]. There are three main types of urinary catheters:

indwelling, external, and intermittent (Houston 2006; USNLM 2011a). The caregivers I

interviewed had experience with each of these. Indwelling catheters are ones that are “left

in place in the bladder “(USNLM 2011a: 1). Once the catheter is in the bladder, a balloon

on the end of it is inflated to hold it in place. Indwelling catheters must be periodically

changed –many protocols call for doing so every four weeks (Houston: 293). A

suprapubic catheter is a special kind of catheter, which also stays in place. Rather than

being inserted through the urethra, it is surgically inserted into the bladder through the

abdominal wall (Houston 2006; USNLM 2011a). Suprapubic catheters as well as the

sites (opening in the stomach) need to be cleaned daily and covered with gauze (USNLM

50

2011a). External catheters, also called collection devices, are primarily used in men. The

most common type is a condom catheter (Houston 2006; USNLM 2011a).

Both indwelling and external catheters require a drainage bag which must be

emptied about every four hours or so (Houston 2006). Small bags can be strapped to the

leg during the day and larger bags can be used at night (USNLM 2011a). Some protocols

recommend periodic cleaning of the drainage bag, which may be done with a

vinegar/water mixture or with chlorine bleach (USNLM 2011a). For indwelling urethral

catheters, the catheter must be cleansed each day (USNLM 2011a). Keeping the care

receiver’s body clean is also important to prevent infections. (Houston 2006: 293 -295;

USNLM 2011a). One caregiver who takes care of a suprapubic catheter explains that the

catheter “goes directly through his stomach, right into his bladder” and that “there’s

always a hole there that has to be covered.” Here she talks about the bag and some of the

procedures she performs:

It’s not on his leg, it’s got a real long hose so I can hang it like from the edge of

the chair and get it out of the way where it’s not –where he can go to school and

not be embarrassed cause he’s carrying pee around with him you know… I have

to change that every month and the gauze around the hole I have to change

everyday…. sometimes twice a day.

Intermittent catheters are inserted to drain the bladder and are taken out once the

flow of urine has stopped (USNLM 2011a). These are sometimes called “in and out”

catheters because the individual is “catheter free” until it is time to drain the bladder

[American Urological Association Foundation (AUAF) 2010]. Some caregivers who

practiced “in and out” catheterization worried that they might hurt the care receiver when

inserting the catheter. It also is important for caregivers to wash their hands before the

procedure and take care that the catheters do not touch any surface before they are

51

inserted. Depending on the particular protocol, catheters may be washed afterward with

soap and water and allowed to dry before storing in plastic bags (Houston 2006: 295).

Some catheters are disposable and are used only once (USNLM 2011d). One caregiver

describes “in and out” (or “straight” as she called it) catheterizations for her husband. She

said:

You have a kit that’s all sterile; so you have to go through making a sterile field,

you know opening it …right. You needed an assistant, which was hard, cause I

didn’t always have one.

This caregiver was extremely concerned about keeping the catheter clean and

being able to insert it properly. Her quote demonstrates how caregivers must often

perform procedures that are not only foreign to them, but must also be executed in an

exact manner. In this case, she felt she needed an assistant to be able to do the procedure

correctly to her comfort level. (Indeed, in my personal experience, I often felt that there

were not as many hands as I needed. For example, I sometimes found it hard to pull the

cap off of a syringe of saline while holding the IV catheter correctly so as not to

contaminate it. I sometimes pulled the cap of the saline off with my teeth because I had

seen a home health nurse do that once.)

Proper urinary catheterization is important to ensure the vital kidney function of

care receivers. One of the biggest complications caregivers identified with catheterization

is the risk of urinary tract infections (uti’s) (See also Houston 2006). To decrease risk of

infection, hand washing and proper care of the catheter are essential. Some caregivers

worried, however, because care receivers still got infections even when they felt they

followed all procedures. It is crucial to carefully monitor catheters because, besides the

risk of infection, there is also a risk of obstruction, leakage (due to obstruction or bladder

52

spasms), blocked drainage (due to the catheter becoming encrusted with debris) and skin

breakdown (Houston 2006).

Wound Care is necessary for people who have wounds from a variety of causes.

Acute wounds may occur due to surgical incisions or trauma. Chronic wounds tend to

occur due to underlying disease processes such as vascular insufficiency or diabetes

(Rice, Wiersema-Bryant and Bangert 2006: 240). There are several types of chronic

wounds. Pressure ulcers, also called bedsores occur when there is “excessive, unrelieved

pressure from external forces such as shearing or friction” (Rice et al 2006: 243). Patients

who are immobile and lie in one position for a long time are especially at risk. Other

chronic wounds include venous ulcers, which are usually found on the lower extremities

of the body, arterial ulcers, which usually occur on the toes or the heel of the foot, and

diabetic ulcers, which also generally occur on the foot (Rice et al 2006: 243-244).

Characteristics of the wound such as its type, depth, and location all affect wound

care procedures. Cleanliness, including hand washing (and/or use of gloves if prescribed),

is extremely important in caring for wounds. In some cases, sterile dressings may need to

be applied frequently. Wounds must be kept clean and closely monitored for changes in

size, color or drainage (Rice et al 2006: 247). Some wounds may need to be irrigated or

debrided, and sometimes physicians need to be consulted for surgical debridement (Rice

et al 2006: 252). Based on my discussion with home health nurses, some nurses

specialize in wound care and may be called upon if a patient’s wound is not responding

well to care.

There are a variety of procedures, products, cleansers and dressings available for

wound care. (See Rice et al 2006.) Wet to dry dressing changes involve placing wet

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gauze dressing into a wound, and allowing the dressing to dry out so that wound drainage

and dead tissue adhere to it. The old dressing is then pulled out and replaced with a new

dressing (USNLM 2011f). Annette describes post surgery wound care, in which she

performed wet to dry dressing changes:

I had to learn how to take the dressing, and put on the gloves, and everything had

to be sterile. And it had to be, I think it was called wet to dry; it had to have the

wet dressing inside so it was almost like a Vaseline covered type of bandage….

We used a tube (of saline) each time that we did it, and we would just squirt it

inside, and then clean it out. You know, soak it up with the gauze. Take the gauze

out. Then we would take the Vaseline soaked bandage and put it down in…and

we’d have to cut a strip so it matched whatever size the wound was, and keep

cutting down, as the wound healed, and it wasn’t so big anymore. And then we

would cover that with gauze … we would tape over top to hold it all in.

Despite eventually learning the labor, Annette said she was extremely nervous the

first time she had to actually perform the procedure on her own because she was afraid

she would hurt her mother:

I told Mom I was shaking. And she said, ‘Just don’t drop the scissors in there.’

(laughs). And so, I was afraid I was going to hurt her because I couldn’t tell how

hard to push and I didn’t want to push because she would moan and groan

anyway, the way it was. Because it just –it was so tender.

As seen, Annette lacked prior experience in wound care, and having no real basis of

comparison, she “couldn’t tell how hard to push.”

A wound VAC (vacuum-assisted closure) is a vacuum, which uses negative

pressure to clean out wound drainage. This machine usually has a pump and a sponge

that attaches to an open wound and “essentially converts an open wound into a controlled

closed wound” (Rice et al 2006: 252). According Rita, the tricky part of using a wound

VAC is monitoring to make sure the suction is maintained. She experienced several

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problems with the pump and had to call and receive assistance from the home health

agency:

Well there’s suction…and there’s this sponge and you have the suction, and the

sponge goes in, and then you put this diaphragm over this wound. And then it’s

attached, you know it’s negative pressure I think cause it’s sucking it out…and

then they (the care receivers) wear like a little belt, or fanny belt or something.

And then they (home health nurses) have to come three times a week to change

that…But then the bag part of it, it’s like anything mechanical, you know, at the

worst time it will get a leak and then it makes a horrible noise and you’re trying to

do everything to try to get it resealed and stuff, and that’s where I would try to

help, doing those kind of things. And then we’d have to call the poor home health

nurses and then they’d have to come at various and sundry times…you can’t have

any leak… because then you lose the suction…It’s gotta be air tight.

Chronic wounds such as pressure wounds must be inspected on a daily basis and

any moisture, for example from wound drainage or urine must be controlled (Rice et al

2006: 252). Several caregivers had loved ones who were susceptible to bedsores and they

often had to get up in the middle of the night to reposition or turn them. Pressure

reduction devices such as trapeze bars or side rails on beds can help with turning or

moving, and pressure relief devices such as air floatation beds may also be used (Rice et

al 2006: 252- 254). One caregiver tells me that even though they have an air mattress, she

still gets up to reposition her son:

The bedsores…pressure sores, you know we have to make sure he changes his

position every hour and I have to get up at least once a night and flip him in

bed…even though he does have an air mattress, basically it’s a safety thing for

me, you know, stop his skin from breaking down even more.

Ostomy. When surgeries are performed to create a new opening (called “stoma)

in the abdomen, the surgery is called “ostomy” (USNLM 2011b: 1). There are many

different kinds of ostomy and their names depend on the location of the surgery. For

example, in percutaneous (through the skin) nephrostomy, a catheter is placed through

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skin into the kidney in order to drain the kidney (USNLM 2011c). In colostomy, the

rectum is removed and the colon is attached to the new stoma (USNLM 2011b: 1). An

ostomy bag is connected to the stoma and is worn outside the body to collect waste.

Ostomy care depends on the type of procedure performed and the body organs

involved. Here a caregiver describes a nephrostomy:

Okay a nephrostomy is a colostomy except it’s not in the colon. It’s an ostomy

that is in your kidney…. And there’s a drain tube that goes into the kidney and it

picks up the urine and it comes out. And then she wore a leg bag…. I had to

change the bag. And then there was a connecting tube between the nephrostomy

tube and the bag… And there’s also a support bandage that fits on the body to

hold that tube so it doesn’t go in and out, in and out… And so that has to be

changed every two weeks.

Caregivers who take care of colostomies must learn how to change the ostomy

pouch to get rid of body waste. This involves careful cleaning of hands and skin around

the stoma, checking the stoma site, measuring the stoma, reattaching a new pouch, and

checking for signs of infection (USNLM 2011e).

Bowel Management Programs. Some individuals who have who have suffered

nerve or neurological damage due to spinal cord injury, or who have other illnesses or

injuries, may need assistance in emptying their bowels. A bowel management program is

often used so that individuals are on an effective schedule (Beers and Berkow 1997: 340).

Programs may consist of diet and exercise and various bowel routines depending on the

type of illness or injury (Beers and Berkow 1997). Suppositories or enemas may also be

used. A technique that is often used is digital stimulation, which involves “circular

motion with the index finger in the rectum” so that the person can go to the bathroom

[Northwest Regional Spinal Cord Injury System (NRSCIS 2011:2)]. One caregiver was

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thankful that she had learned this technique from a rehabilitation center and felt that it

really helped put her son on a regular bowel routine:

Well if you do this digital manual stimulation, like every night the same time, or

you know, every other night, he has never had an accident… And he does not

have to wear a diaper…You can train your bowels to go when you need to

go...unless you’re sick you know or something like that.

Bowel programs generally take about thirty to sixty minutes to perform and are

tailored to the specific needs and preferences of the individual (NRSCIS 2011).

Respiratory Procedures. Some care recipients have respiratory compromise due to

a variety of reasons such as brain injury, ALS, or spinal cord injury. Sometimes a suction

machine is used to help clear secretions out of the airways. Secretions are pulled into a

suction canister. Essentially, a catheter is connected to the suction machine and then

inserted gently into the back of the throat (Ahmann and Page 1996: 177). Sometimes it is

helpful to mark the catheter showing how far down it can go and still be safe. The

machine can also be used in the nose (Ahmann and Page 1996: 178). Suctioning should

always be done gently due to the potential for tissue destruction and bleeding (Ahmann

and Page 1996: 177). When Morgan had to perform suctioning for her husband she said

she was worried about the timing of the procedure. She said if she didn’t do the

procedure for a long enough period, there was the danger of not getting a good result in

clearing secretions so he could breathe, but yet, “You can only hold it so long, and suck

so long because it cuts off their oxygen while you’re doing it. I always thought, ‘I’m

gonna kill him.’”

According to nursing scholars, the suction canister and tubing require daily

cleaning (Rice 2006c) and it is also necessary to clean catheters between each pass

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(Ahmann and Page 1996: 177). According to Rice (2006c: 229), catheters should be

irrigated with water and stored in clean paper towels between use and they can be

discarded after twenty-four hours or cleaned, air dried and stored for future use. In case

of a power outage or electrical failure of the suction machine, a mouth suction device

should be available in the home (Ahmann and page 1996). This is a small suction device

that works manually (Ahmann and Page 1996: 180).

A tracheostomy is an opening in the throat (a type of stoma), which allows a

person to breathe when the airway has been compromised; the tracheostomy tube serves

as an “artificial airway” (Rice 2006c). In order to take care of a tracheostomy, a person

must know how to suction secretions, how to remove and insert the tracheostomy tube,

and the emergency procedures to follow if there are problems with insertion or the person

has difficulty breathing (Driscoll 1996). Suctioning should be performed carefully; and

the suctioning catheter should be inserted just below the tip of the artificial airway

(Driscoll 1996: 224; Rice 2006b: 229). When I visited with Randy, he told me that

catheters are marked so that you can follow the numbers and know how far in to place it

when suctioning:

Well … on the catheters they got numbers on there…Your trach is only like (at)

the 6 or something…He’s got numbers on it and stuff… on the side there. And it’s

… 6 inch to 7 inch to 8 inch to 9 and so forth.

As noted, tracheostomy tubes need to be changed periodically. Some nursing

literature recommends at least once per week for infants and children and once per month

for adults (Driscoll 1996: 224; Rice 2006c: 228). Changing tracheostomy tubes can cause

anxiety for care recipients and caregivers alike. A device called an “obturator” is used to

insert the “outer cannula” of the tracheostomy tube and must be removed very quickly

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because it temporarily occludes the airway (Rice 2006c: 220). According to nursing

scholars, generally, infants and children lie on their backs with a towel underneath their

neck or shoulders to expose the stoma, but adults may feel greater control if they are

sitting up (Rice 2006c: 228). Tracheostomy tubes, which are reusable, need to be cleaned

and air dried (Rice 2006c: 229). It is also important for caregivers to clean the stoma

daily and to apply a clean, “absorbent, lint-free” dressing around it (Rice 2006c: 229).

Stomas should be inspected to make sure there is no redness or infection (Rice 2006c:

229).

Because obstruction of the airway is a life threatening condition, caregivers must

be well versed in emergency procedures and have supplies readily available (Driscoll

1996). Nursing scholars recommend keeping extra tracheostomy tubes, including tubes

that are one size smaller, in case the regular tracheostomy tube cannot be inserted

(Driscoll 1996; Rice 2006c). If the smaller tube cannot be inserted, Driscoll (1996: 225)

recommends for infants that the “suction catheter can be placed in the stoma, secretions

removed and breaths given through the catheter” (Driscoll 1996: 225). CPR may need to

be used and emergency personnel called. For adults, if the tube cannot be properly

inserted, Rice recommends that the caregiver use her or his hand to make a tight seal over

the stoma and manually ventilate the care recipient by use of an Ambu-bag and face mask

until emergency backup arrives (Rice 2006c: 220). Unfortunately, not all emergency

rescue squads have experience with trachs (Driscoll 1996: 225). I learned this from a few

of the caregivers I spoke with. One had to suction a trach even after an emergency squad

was called because the EMTs did not know how to perform the procedures. Clearly, as

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described by Phoebe at the beginning of this chapter, providing tracheostomy care is a

complex and risky undertaking.

Sometimes people need assistance in order to breathe. A ventilator is a machine

that “moves air into the lungs” (Ahmann and Jerome-Ebel 1996: 236). Ventilators may be

used continuously or intermittently, according to a person’s needs (Rice 2006c). Today,

positive pressure ventilators are most often used. These ventilators push air directly into

the lungs through either a face/nose mask or a tracheostomy tube (Ahmann and Jerome-

Ebel 1996; Okun 1995). Though there are different types of positive pressure ventilators,

often volume controlled ventilators –which deliver breathes based on a pre-set volume –

are used for home care (Ahmann and Jerome-Ebel 1996; Rice 2006c). Portable

lightweight models are battery operated and are small enough for travel or to attach to a

wheel chair (Okun 1995:36; Rice 2006: 218). One caregiver describes this model and

says it involved:

Making sure that the settings were right, the tubes were clean. You know,

you…always had to have saline, like for moisture, like to have a saline bag. I

mean, he had a little laptop; well it’s called a laptop ventilator. And it hung on the

back of his chair. You just kinda make sure it always stayed connected and

always stayed charged up…you can have like a huge battery. It runs probably (a)

couple of days. It’s an external battery that is actually put on the wheel chair…

you can just hook it in to the wheel chair.

Positive pressure ventilators are set up so that alarms sound if the person becomes

disconnected, or there is an obstruction between the machine and the person’s lungs

(Okun 1995: 36). Tracheostomy tubes used with ventilators must have cuffs that inflate

slowly as the ventilator gives a breath, in order to prevent air leaks (Rice 2006c). Some

persons who are on ventilators require additional oxygen, but others do not (Rice 2006c).

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Obviously, there is a great deal of responsibility and time commitment for the

caregiver who is caring for a ventilator dependent person. Serious complications,

including death, can occur due to machine failure or airway obstruction (Okun 1995).

Complete knowledge of the ventilator machine and its operation is required. Nursing

scholars also note that family members also need to be prepared in case of emergency.

They need to understand the signs of respiratory distress or failure, and they should know

CPR (Ahmann and Jerome-Ebel 1996). If a person requires continuous ventilation, a

backup system must be in place in the home, including a self-inflating manual ventilator

(Ambu-bag); an identical second ventilator is also often used (Rice 2006c). Area

emergency personnel also need to be alerted, as do telephone and utility companies, so

families can be on a priority basis if there is a power outage (Ahmann and Jerome-Ebel

1996). One caregiver told me that before she brought her child home, her home had to be

inspected to make sure there were proper power systems in place.

Non-continuous ventilator support for people who do not have a tracheostomy can

sometimes be achieved by use of a continuous positive airway pressure (CPAP) machine

or through a bilevel pressure device (often referred to as a BiPAP ®) (Rice 2006c).

Individuals who have sleep apnea or neuromuscular dysfunction and who need

supplemental support at night or intermittently during the day may use these machines

(Rice 2006c: 219). Typically a person wears a mask, which connects to the machine by

tubing. One caregiver found the BiPAP awkward and difficult to operate, and said the

“alarm wouldn’t stop going off at night.” She said they tried to supplement by using it

during the day.

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It would really interrupt his sleep and… he could only tolerate it a couple of

hours. But we also knew he felt better after he wore it. So during the day…he’d

go back into the bedroom. We turned on the TV back there… and we’d put the

BiPAP on then, while he was awake – which would always put him to sleep, but

he’d get a couple of hours then too…And we would put it on him when we

thought he was acting really lethargic. Cause he wouldn’t know why, you know…

and we’d go, ‘Let’s put some BiPAP on’.

Individuals who are paralyzed or who have trouble generating a cough may also

need the assistance of a cough assist machine to help clear lung secretions. Individuals

are usually connected to the machine by tubing and a mask. When breathing in, the

machine delivers air to the lungs, then creates a sucking force during exhale. (UW Health

2010). Caregivers of course, must properly clean the machine and the mouthpiece (UW

Health 2010). A caregiver describes a cough assist machine:

It’s like a vacuum cleaner... And what it does, is it forces air in and sucks it out so

it helps suck out the mucus…Because he can’t cough…He has no cough muscles.

So we had to learn how to do that. It attaches to the trach and then that causes the

cough…Yeah, it actually just pushes air in… It’s called a cough assist, but he

doesn’t cough. It just pushes air in, and it sucks it back out like a vacuum cleaner.

Other Procedures. In addition to the nursing skills discussed above, caregivers

may provide various other nursing procedures including taking vital signs, watching for

signs and symptoms, giving injections, monitoring seizures, dispensing medication, and

drawing blood. They may also assist with various physical therapies, respiratory

therapies, or monitoring of implants or devices. Exercises that stretch and strengthen

muscles may be needed for people who have mobility issues (USNLM 2011g). In

illnesses such as cystic fibrosis, chest physical therapy (CPT) may be used to free the

lungs of secretions. This therapy requires that the caregiver cup his or her hands and

percuss with repeated clapping motions over sections of the lungs. The care recipient will

lie in several positions in order to promote drainage of secretions (Ahmann and Page

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1996: 176; Rice 2006b: 197; CF Foundation 2011). New devices are now available

which replace or supplement CPT. The mechanical vest inflates and shakes the chest; and

hand held devices such as the Flutter™ and Acapella ™, stimulate coughing when a

person blows into them (Rice 2006b; CF Foundation 2011). Care recipients can also use

breathing techniques such as the “huff cough” to help clear secretions (Ahmann and Page

1996; Rice 2006b; CF Foundation 2011).

Some individuals require aerosolized breathing treatments, which contain various

medicines, and may be delivered through a nebulizer machine. The individual breathes

though a mask or T piece, which is attached to the machine by tubing (Ahmann and Page

1996). Cleaning and sterilizing the nebulizer parts are essential in order to prevent

infection (Ahmann and Jerome-Ebel 1996b). Caregivers and care recipients may also

have a variety of other devices and machines they must monitor. Some individuals have

pump implants, which continually deliver medication through implanted catheters. For

example, some pumps deliver insulin for diabetes control (American Diabetes

Association 2011), while others deliver medicine to reduce muscle spasticity caused by

brain or nerve damage (USNLM 2011g).

“Skilled Nursing”, Education, and Nurses’ Credentials

Today, amongst the explosion of new medical technologies and therapies, the

credentialing of medical professionals is well known. Nursing practice – historically

performed at home by women who passed down skills to their daughters (Reverby 1990;

Abel 1991)–has evolved into a professional field with strict credentialing and educational

requirements. These requirements and the very specific credentialing processes for

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nurses parallels –somewhat ironically –the transfer of nursing skills back home to

caregivers, who may have little or no previous medical training,

Currently, nurses are licensed by State Boards of Nursing, and each state

legislates the specific requirements as well as their scope of practice. According to the

National Council of State Boards of Nursing (NCSBN) state boards develop practice

standards, policies, and rules and regulations; they also enforce nurse licensure and the

Nurse Practice Act (NCSBN 2011a: 1). The NCSBN has developed a Model Nursing

Practice Act and Model Nursing Administrative Rules. This document defines the

practice of nursing under Article II: Scope of Nursing Practice:

Nursing is a scientific process founded on a professional body of knowledge; it is

a learned profession based on an understanding of the human condition across the

lifespan and the relationship of a client with others and within the environment;

and it is an art dedicated to caring for others. The practice of nursing means

assisting clients to attain or maintain optimal health, implementing a strategy of

care to accomplish defined goals within the context of a client centered health

care plan and evaluating responses to nursing care and treatment. Nursing is a

dynamic discipline that increasingly involves more sophisticated knowledge,

technologies and client care activities (NCSBN 2011b: 3).

Nursing, then, is defined by the profession as both a “scientific process” and an “art

dedicated to caring”. Nursing involves “sophisticated knowledge” and “technologies” and

is “client centered”.

In terms of credentialing and education, generally, there is a hierarchy in nursing

work. Registered nurses (RNs) have more education and training than licensed practical

nurses (LPNs) or licensed vocational nurses (LVNs). Nurses’ aides are not licensed

nurses but do receive special training and many undergo certification processes.

Registered nurses supervise the work of LPNs, LVNs and nurses’ aides. Advanced

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practice nurses are registered nurses who have completed additional training and

credentialing.

According to the American Nurses Association (ANA), in order to become a

registered nurse (RN), a person must be a graduate of a state approved school of nursing.

(ANA 2011a). These schools can be four year universities that grant the Bachelor of

Science in Nursing (BSN) degree, two year associates degree programs, or diploma

schools which are usually associated with hospitals (ANA 2011a; USDOL 2011a). The

professional push is very much toward greater training in university settings and diploma

programs are becoming much less common (USDOL 2011a). As of 2004, approximately

eighteen percent of nurses had diploma certification, thirty four percent had an ADN,

thirty five percent had a BSN and thirteen percent had a master’s degree or PhD (ANA

2011a: 1).

Nurses’ education includes classroom courses in chemistry, biology, nutrition,

psychology and theory (USDOL 2011b). Also, a core part of the curriculum is

supervised on-the-job clinical training [United States Department of Labor (USDOL)

2011a]. Registered nurses must pass the National Council Licensure Examination, or

NCLEX-RN (USDOL 2011a). They may attain additional credentialing for advanced

practice and other specialties through the American Nurses Credentialing Center (ANCC)

(ANA 2011a). As of 2008, there were 2.6 million employed registered nurses – sixty

percent worked in hospitals, eight percent in doctors’ offices, five percent in home health

care and five percent in nursing care facilities. The rest worked in employment services

and government, educational, and social agencies (USDOL 2011a).

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Today, it is registered nurses who are in charge of administering, supervising, and

teaching skilled procedures to lay caregivers. Based on my discussions with them, as well

as nurse administrators, a defining characteristic of RNs is that they have the professional

knowledge to do comprehensive patient assessments. Moreover, due to the autonomy and

professional judgment required in home care, home health agencies do not typically hire

registered nurses until they have had at least a year of experience in hospitals or

institutional settings. Some of the nurses and administrators referred to home health

nurses as a “special breed” – able to work independently with minimal supervision. They

stated that home health nurses must be able to “think on their feet” and handle a wide

variety of situations. Importantly, they must teach caregivers of various backgrounds how

to perform the nursing skills for which they, themselves, have received much education

and clinical training.

Licensed practical nurses (LPNs) and licensed vocational nurses (LVNs) work

under the supervision of physicians or registered nurses. They usually complete one-year

training programs in vocational schools or community or junior colleges, which have

both classroom and clinical components (USDOL 2011a). In order to be licensed, they

must pass the National Council Licensure Examination, or NCLEX-PN. In 2008 there

were about 754,000 nurses employed as LPNs and LVNs – twenty-five percent worked in

hospitals, twenty-eight percent in nursing homes, and twelve percent in physicians’

offices; others worked in home health care, employment services, community care

centers and government agencies (USDOL 2011a). LPNs are sometimes assigned as part

of home health waivers for patients who need continuous care. I met a few nurses in my

fieldwork that had worked in this capacity.

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Nursing aides or nursing assistants are generally supervised by nurses or medical

staff and perform routine and often physically demanding personal care work such as

bathing, toileting and dressing (USDOL 2011a). They are usually trained in programs in

vocational schools, high schools or community colleges. In order to become a certified

nurse assistant (CNA), aides must have at least seventy-five hours of training and pass an

examination (USDOL 2011a). Basic CNA training includes communication skills, safety

and infection prevention, personal care and grooming, basic nursing skills such as taking

vital signs and recording weight and height measures, and recognizing patient risk factors

(NCSBN 2011b: 40).

As seen, generally “skilled” nursing is thought of as something that is beyond

what a nurses’ aide is allowed to do, however, nurses’ aides may perform some basic

nursing skills such as taking vital signs. According to the National Council of State

Boards of Nursing, CNA’s who receive supplementary training may be able to perform

additional nursing care such as oxygen therapy, wound care, or other nursing skills “for

stable, predictable patients with limited risk of complication and change under the

supervision of a licensed nurse” (NCSBN 2011b: 41). Aides’ scope of practice, however,

varies widely by setting and the particular state law. In the Midwestern state I studied,

home health aides were not allowed to give medication to patients. When I accompanied

a registered nurse on home health rounds she explained that while aides may open

packages of medication, they are not allowed to actually dispense the medicine. This can

cause dilemmas for aides who see needs they are not legally allowed to address

themselves. While I did not interview aides, caregivers and nurse administrators and

educators referred to this problem on several occasions. Stone (1999) observed this same

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dilemma – the aides she talked with were not even allowed to rub foot cream on patients

if a doctor had prescribed the cream (p. 62).

Certified aides are listed on the state’s registry of nurses’ aides. In 2008 there

were about 1 .5 million nursing aides, orderlies and attendants in the U.S. – forty-one

percent worked in nursing care facilities and twenty-nine percent in hospitals. In addition

there were about 1.7 million aides employed as home health aides and personal and home

care aides (USDOL 2011a). Home health aides generally work for certified home health

agencies and hospices that bill Medicaid or Medicare. They must be certified, and must

complete training of at least seventy-five hours and pass an examination or state

certification. Those who work as personal and home care aides but do not work for such

agencies may provide various personal and homemaking services, but do not have the

same training requirements (USDOL 2011a).

Conclusion

Scientific advancements and new technology have made nursing skills

increasingly complex and yet, family caregivers now perform many of these procedures

at home. In this chapter I have shown some of these skills, as well as their complexity,

risks, and the potential for complications. Notably, licensed nurses today must undergo

rigorous educational requirements, clinical training, and licensure processes in order to be

qualified to practice these skills. Caregivers, however, have various backgrounds and

resources, and differential abilities to perform such labor. I turn to these issues in

Chapter 3 “Caregivers in a Fragmented System”.

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Chapter 3: Caregivers in a Fragmented System

Who Does It?

Caregivers come to do skilled nursing in multiple ways. Some experience a

sudden family tragedy such as an accident. Others hear a potentially devastating medical

diagnosis. Some watch as loved ones undergo exacerbations of already diagnosed

conditions, or make decisions that require skilled medical labor in order to improve their

health or prolong their lives. The caregivers in this book represent each of these

scenarios. They have learned to perform nursing skills in order to care for loved ones who

have cancer, amyotrophic lateral sclerosis (ALS), cystic fibrosis, spinal cord injury, brain

injury, amputation due to diabetes, cerebral palsy, and short bowel syndrome. Of the

twenty-eight caregivers, nineteen are parents or guardians; six are spouses, one a

daughter, one a sister, and one an uncle. Twenty-two of the caregivers are women; six are

men. All caregivers lived with the care recipient at the time of their care work.

Importantly, unlike a paid job or profession, in which people make decisions to do

skilled labor based upon their interests, their training, or their economic needs, caregivers

come into the labor process based on their pre-existing relationship with a family member

or loved one. In this regard, the particular labor processes invoked are not “chosen” per

se, but are enacted in response to perceived and often profound situational needs. The

relationship between caregiver and care receiver is a central component in understanding

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caregivers’ feelings and their motivation to perform the work. It is apparent that the

caregivers in this study have deep emotional investments in care recipients, which may

have been made over many months or years before skilled care is needed.

Due to the centrality of the relationship between caregiver and care receiver, the

caregiver’s frame of reference is most clearly shaped by the particular journey their loved

one takes through the medical establishment. No two journeys are the same. The illness

or condition and how it affects the unique individual, the particular treatment plan, and

various encounters with the medical establishment are but a few of the many processes

that ensue. Caregivers accompany their loved ones to countless medical appointments

and tests. Some travel out of town or across state borders for medical treatment. Many

spend sleepless nights on makeshift beds in hospitals or outside intensive care units. They

keep records, learn new skills, negotiate finances and fight for resources. Caregivers

become –through their constant negotiations –active agents in their care work.

Who are the caregivers that perform skilled medical labor? As seen in Chapter 1,

we know that gender plays an important role in caregiving labor, and that it is women

who are most often caregivers. Gender exerts influence in pre-existing family dynamics,

relationship patterns, and divisions of labor within the family. There are also strong

societal expectations that women are the “natural” ones to assume such care (Cancian and

Oliker 2000; Daniels 1987). But men also perform skilled caregiving, and, as with

women, their work depends on relational dynamics and the unique situations in which the

need for skilled labor unfolds.

Generally, in this study, women perform more of the skilled medical care for

children within their families as well as the day-to-day care, such as getting children to

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medical appointments and ensuring compliance with medical regimens. Similar to other

studies of household labor (See Coltrane 2000), women also take greater responsibility

for organizing the labor, even when their husbands help a great deal. For example,

women caregivers of children were likely to make lists or tell their husbands the specific

things that needed to be done. Still, although gender norms are apparent, the study has

several cases of couples that share a great deal of the skilled work for their children.

It is not surprising that the performance of skilled medical labor falls particularly

hard on single women, and sometimes the labor itself causes conflict in marriages. In

three instances, marriages ended in separation or divorce because the women believed

their husbands were unable to contribute in a meaningful way to their caregiving duties.

These women stated their husbands’ lack of involvement and/or resentment over their

caregiving labor was no longer acceptable to them.

While family resources are shaped by societal gender patterns and ideology – for

example men generally earn higher salaries, and women are most often thought of as

caregivers –the need to perform skilled medical labor imposes additional constraints and

causes caregivers to reflect critically on their unique situations and the particular

resources that are available to them. This process is noted by Corbin and Strauss (1990)

in their study of chronic illness. Their concept of “making arrangements” refers to “the

process by which agreements are reached and maintained between persons for carrying

out the tasks associated with home care” (1990:61). For example, one couple whose

infant son had experienced a tragic accident resulting in brain injury decided that she

should stay home right after the accident. However, due to her better position in the job

market at that time, and hence insurance benefits, she eventually returned to work while

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he took on a part time job. Another couple appeared to have quite egalitarian views, but

decided that she should stay home because of his better salary and benefits. Although she

said her husband shared much of the skilled labor – “If I dropped dead today, he would

be able to take care of my son.” –they both agreed that one of them should stay home and

saw this as unavoidable based on their situation. Other caregivers reached similar

conclusions and made life style changes to accommodate caregiving. Some moved or

changed jobs in order to fulfill caregiving needs. One woman who cared for her mother

moved back home from another state in order to provide hands on skilled care. In

another family, a grandfather took early retirement so he could move in with the family,

allowing the mother to eventually return to work.

We know less about men caregivers than women. Three of the men interviewed

for this study help their spouses care for children. Two men were the primary caregivers

for their ill spouses and their stories gave rich insight as to who might perform such

labor. In both cases these men lived alone with their spouses and had no adult children

nearby. Although one did have other family members close, he saw caregiving as his

responsibility. In cases of partners who are in relationships with strong norms of

reciprocity, performing the work appears to be a way of demonstrating commitment and

dignity. As one of these men said, “This is just what do you do. You just assume that if

the shoe were on the other foot, that she would do the same thing for me.” Another male

caregiver cared for his dying nephew, allowing him to come live with him. When I asked

how he made the decision to do home care he explained that the two had long had an

extremely close relationship. He stated,” He asked me to bring him home…because he

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so much enjoyed my place and there’s no way that I was going to say no, that you can’t

come to my place to pass.”

And so on an individual level, the caregivers who were interviewed for this study

–both women and men –seemed most concerned about the health and welfare of the care

recipient. Gender norms, pre-existing work histories and divisions of labor coalesced

with perceptions of available resources and informed a thought process for each

caregiver: “What do I need to do?” and “What are my choices?”

Past Experiences and Work Histories

Notably, the majority of caregivers in this study had no prior medical training.

However, because I wanted to see how experiences and work histories mattered in

providing skilled medical care to a family member, I did not exclude caregivers based on

any particular caregiving experience, occupation, or work history that was revealed

during the interview process. A few caregivers said they had learned a little from prior

experiences of taking care of family members, although these family members did not

require the level of skilled care that they were currently giving. For example, one

caregiver had taken care of an ill mother, and another had learned to give allergy shots to

her son.

Five of the caregivers were in health care professions at the time they began

providing skilled care. Two were registered nurses; one was a physical therapist, one a

pharmacist, and one a dental hygienist. Another four caregivers had some prior

experience in medical care, though for most, the experience came years before, and none

were in skilled nursing. The pattern I observed is that generally any prior medical training

helps, especially if it is direct training. Observation of skilled nursing labor also helps.

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But regardless of prior training, caregivers still face unique challenges because the

context of home, as well as caregivers’ feelings about care recipients, affect the labor

process and the orientation toward the labor. Let me explain.

Of the nine caregivers who had some medical background, two had worked in

years past for fire departments –doing some emergency medical work –before their

current careers (which were not medical). One of these caregivers did not think the

experience helped much. The other said it helped him “not to be so afraid.” However he

said that it was extremely different having to perform medical procedures for your own

family member as opposed to someone else. He told me the first time he had to transport

his son on his own, he was “petrified” because he was “hooked up” to so many tubes that

“I didn’t want to pull one of them out.” A physical therapist said although she believed

her background helped her with knowing about resources, as well as performing some of

the labor –such as transporting and the use of oxygen –for the most part, her training gave

her no help at all with skilled nursing. She was required to do several skilled procedures

and said, “This wasn’t my personality at all. So I really had to step out.” A caregiver with

a background in pharmacy said her work experience helped her as far as staying calm in

stressful situations. But, when it came to actually performing medical procedures on her

child:

I felt like a babe in the woods. You know, like it would be a whole lot easier for

me to teach you how to do this. Or watch you do this. But when I had to do it, it

was like –it was just a totally different experience.

Two caregivers had been nurse’s aides for a short time around or during their high

school years –some thirty years before. These caregivers thought their experience helped

orient them in a general way toward nursing labor because of their hands-on care and

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observation of nursing work. Another caregiver, who was not in a medical job at the time

she started skilled labor, had worked as a home health aide rather recently and said her

training definitely helped. She had spent a few years taking care of a patient who was

quadriplegic and said she had the benefit of watching the nurses who took care of him on

a daily basis. When an accident later resulted in her adult child sustaining a spinal cord

injury, she already knew what was involved in the care, and said she was able to resume

the duties pretty quickly in rehab. Thus, the process of observing nursing labor and

providing hands on care –even if it is not necessarily skilled nursing labor –helped this

caregiver learn the labor more quickly. However, she also commented that taking care of

a patient is very different from providing care for a loved one at home:

It’s kind of different when you go to someone’s house and then you leave, and

you go to someone else’s house and you leave, and then you go home for the day.

But when they actually live with you, a lot of people don’t realize that you get in

this tunnel. That all you do is well, ‘You gotta do this now, and then this is next,

and this is next and then you gotta go to this, and then you gotta go back to this

person, and …-it’s non stop. When you have someone living with you that…has

just come home from the hospital from having an accident like that…it’s 24 hours

a day, 365 days a year…There is no break. There’s no break. And even if you

have somebody to come in and help, your mind is still wandering, ‘Well I need to

do this while they’re here, and I gotta take care of this while I’ve got a minute,’

and it’s just, it’s hard. There’s a big difference…when you are able to go to

people’s homes and then you come home …you’re not at work anymore…

But when you’ve got someone that lives with you that’s in a situation like that,

you can’t escape it. It’s there. There is no getting away from it.

This experience shows how the context of home changes the labor process for

caregivers. Even though this caregiver felt confident with her skills in performing the

labor, the fact that she was always on the job, and was taking care of someone she cared

deeply about, altered the labor process for her.

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Interestingly, two caregivers were registered nurses whose prior training was

directly related to the medical procedures they performed. This of course helped greatly

with their adaptation to and execution of the labor. However, both of these nurses

discussed a variety of issues, which again, made home medical care different for them.

These issues will be discussed here and in subsequent chapters. One nurse had done IVs

as part of her job at a hospital then later had to give IVs to her child at home. “I was very

thankful that I knew what I was doing,” she said. Her experience made her very

empathetic about what caregivers go through at home:

I feel that it’s really overwhelming for a person who doesn’t have any medical

knowledge…very overwhelming –and to keep things clean and sterile, you know.

I know how to do all that and (I wonder) if they (other caregivers) really know

how important it is to keep that PICC (peripherally inserted central catheter)

clean…I was okay because I knew a lot already… But I have thought over the

years, if I wasn’t familiar with it, how overwhelmed I’d be. I mean…I was

overwhelmed…by all the equipment…-I mean, it was just these boxes of

medicine, equipment, tubing…

This caregiver said that doing the labor at home required a great deal of

coordination in the daily schedule– for example, adjusting sleep patterns, getting up in

time to administer the drugs, and setting the medication out of the refrigerator before

infusing it. Interestingly, she said she believed her training as a nurse made it more

difficult for her in some ways because she knew precisely the possible complications of

the medication: “ I worried about …the effects of the drugs on her kidneys –…I knew too

much.”

The other caregiver had a background in nursing but had to learn some of the

procedures because she had not worked with them for some time. This nurse also had a

great deal of empathy for caregivers. For her, the emotional part of the caregiving was

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extremely difficult. She said it was completely different performing nursing for a family

member as opposed to a patient at work, and she imagined that the emotional toll would

be even more so for someone with no medical background:

It’s difficult. And you know I feel sorry for people that don’t have a medical

background. You know this is hard for them…. I was thankful that I was a

nurse…You’re trying to adapt to (your loved one) being so sick…so you got the

emotional side. Plus then you’ve got just the physical side of doing treatments and

care…

Of course, the actual labor process was much easier for her than it would be for a

medical novice.

Well it’s way easier for me, you know. But even for that …I had to learn to give

the IV… And then the darn machine wouldn’t work sometime and then you were

getting nervous about that. And then you’d have to call…One time it was being

aggravating so we had to stop at hospice and get ’em to work on it…. You know,

it would be hard for me sometimes… So you can imagine if you’re not a medical

person it could be horrible sometimes…You’re scared, you know, you’re nervous

about hurting somebody.

Notably, these nurses faced some of the same challenges as other caregivers in

issues such as schedule coordination, organization, equipment malfunction, and the like.

These issues are particularly pronounced in a home environment –which lacks standard

work hours and the support of a hospital. Interestingly, several home health nurses

commented that they believe having a medical background helps caregivers know what to

do, but a few said that it could actually be an obstacle. One nurse said a caregiver with no

medical background is “starting in fresh”. And another said:

I find that the ones that do have the medical background are the tougher ones to

teach because they already know everything. They…have certain ways that they

had heard things should be, or they’ve been taught and want to continue it…that

way, and then (they) question the nurse coming in…Not all of them are like that,

but there’s quite a bit, and you just tell them… ‘You be the caregiver and let me

be the nurse. And you take your nursing part or your EMT part out of it and let

me show you as the caregiver.’

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The Question of “Willing and Able” Caregivers

Importantly, the caregivers I interviewed were all “successful” in performing care,

in that they learned the procedures and incorporated them into home life. According to

the nurses I interviewed, the majority of caregivers they see are willing to learn because

they believe it is the best thing for the care recipient. According to Ruth, “For the most

part I think …family members, caregivers, are real receptive to learning.” When I asked

Josephine if she had ever noticed what makes some caregivers able to catch on and learn,

her answer reflected the views of many of the nurses, “Most of it seems to be just a

willingness. I mean they have to want to. A lot of people reluctantly do it.”

Indeed, nurses say they must have a “willing and able” caregiver in the home and

they believe that much of the willingness is based on the relationship between the

caregiver and care recipient. Virtually all nurses say they look at this relationship as a key

feature in their assessment of who will give good care. As Devin said, “It depends on

how much they care about the person they’re helping.” According to Vicky:

I think people that…have a close relationship –they seem to want to do what they

do. They want what’s best for their family and most of them, if they have that

sense, want to do it if they feel like that’s what’s needed.

Nurses contrasted this kind of caregiver with the one who “really didn’t want to

be bothered.” According to one nurse:

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If you’ve got a caregiver that’s right there with the patient, listening to you, very

active with the patient’s care, I know I’m okay. But, if I go there and the

caregiver’s like, ‘I’m running to the store since you’re here with them, or

…taking a shower or washing dishes, and then I’m like you know, ‘This ain’t

happening.’ So what I try to do is say…‘Hey I’m here to educate you on this IV.

This patient can’t do it.’ Normally…most insurances… don’t let us go in every

day to do the IVs…. It’s not so much us saying, ‘No we’re not doing it’ –the

insurance ain’t gonna pay for it. But, you know, if you got someone like that, I’ll

call ’em in and say, “Listen, you’re gonna have to learn to do this… and I will

walk you through it and stay as long as I can.’ But that’s how I can usually tell –if

they just totally ignore the patient or (are) just right there. I mean a lot of –most

caregivers –are right there…They want to learn, they want to know.

Nurses said it is important to consider all aspects of the relationship between

caregiver and care receiver. For example, a few nurses said they have seen cases in

which, due to the caregiver’s body language or comments, they suspected women had felt

trapped in relationships and did not feel like being attentive to their partner’s needs. As

one nurse said, “He lays there and she’s okay with that, you know? ...She’s gonna do the

limited amount.”

Nurses who spoke of the importance of relationship said they were also attuned as

to how caregiver stress or burnout can interfere with being “willing and able”:

Those individuals who really loved their loved ones were much more willing to

make the effort to do. Those who really didn’t care didn’t want to be bothered.

And you get a real good sense of that in the first couple of visits. Like, ‘I don’t

want anything to do with this,’ you know? You can tell if the marriage is strained

from the git-go…or you can tell if…the parents are fed up. You know? You can

tell if … the daughter is just, and it could be that …you know you got an

Alzheimer’s (patient) and the caregiver is just damn worn out…and you can tell

that. And that is affecting whether they’re able to do the care or are willing to do

the care. And then you have to step in and help, you know? ... How long has the

caregiver been having to do this kind of stuff or will they have to be doing this

kind of stuff? And if it’s, you know, like the dementia or Alzheimer’s patient,

they better have some support systems and if not, we need to sit down and talk

about that, you know? ... Those are the kinds of assessments you gotta do… You

can’t look at just… the patient’s wound. You gotta look at everything that’s

associated with that patient.

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These nurses say they recognize caregivers are placed in hard situations and as part of

their assessment they try to understand the caregivers’ attitudes toward doing the work.

According to one nurse, her assessment changed the way she monitored care:

To me it’s always been about the rapport that they have with the patient. If you

have a daughter who feels like she’s doing this wound care just because she is the

only one out there to do it, and she feels actually trapped into having to do it,

she’s probably not gonna provide the best care. Okay? You still have to teach ’em

but you just add to your documentation in the most objective -or subjective -way

you possibly can without saying, ‘I don’t think (this caregiver’s) gonna do a good

job.’ You can’t say that in your chart. So you basically do what you have to do.

But then for those cases you actually do a little more monitoring, following it. So

you might have had it taught and truly could discharge today, but you might do

two or three more visits, span it out over two weeks… to just make sure. Cause

it’s all about health and safety…If you can’t ensure their health and safety, what

kind of health care provider are you? Why are you there? ...What difference did

you make?

And according to Rhonda:

If you have caregiver strain, the patient’s gonna have issues…It’ll cause the

patient to get all stressed and upset if the caregiver’s ... stressed for taking care of

the patient…It’s a big deal.

Thus, nurses maintain that the caregiver/care recipient relationship is one of the

most crucial aspects affecting caregivers’ willingness to learn the labor, and they also

appear to have a keen understanding of how stressful some caregiving situations can be.

In these instances, they may “step in and help”, inquire about caregiver support systems,

or monitor care more closely.

Nurses identified a number of other obstacles, which may prohibit some people

from taking on the labor. As discussed in the previous chapter, anxiety about hurting

care recipients is often a big issue. As one nurse said, “Their fear of screwing it up or

doing something wrong is there.” And another, “They’re afraid they’re gonna hurt their

family.” For the most part, nurses showed a great deal of empathy for this. As Christine

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said, “Oh yeah, I’d be scared if I wasn’t a nurse. I mean I remember the first time giving

someone a shot or doing something like that, I was scared, and I was going to nursing

school.”

Nurses also indicated that caregivers may be in a very emotional state after

discharge, or may be going through a range of emotions such as denial or fear. According

to Cecile:

You have to assess… to see if they’re…emotionally stable enough to deal with

the situation…If you have a caregiver who is always teary eyed, you know it’s

gonna be kind of hard to teach…cause she can’t hear. I mean she can’t. She can’t

stop being so overwhelmed with the issues. You can’t teach somebody who’s

overwhelmed, you know? And you have to…gotta back up and do it slowly.

Nurses said in situations where caregivers are having a tough time emotionally, they may

have to take extra time to counsel or they may draw on social workers to help out. As

Cecile said, “Utilizing a social worker now is even more important because nurses have

so little time to do the social part of support.”

Nurses also said that some caregivers have difficulty working with the body,

especially for family members that are close to them. “Some wounds are not so nice” as

one nurse said, or according to Devin:

Some people can’t handle this. You know they can’t handle the fact that there’s

something open on their child or their parent. They just can’t grasp it, makes them

sick…people don’t have the stomach for some things.”

Another nurse states:

You have to have a willing and able caregiver. If I come in to a quadriplegic and

she lives with her mom and dad, and dad can’t stand the sight of needles and

passes out every time and mom starts vomiting when she sees the blood flash

back, they’re not willing... they might be willing, but they’re not able.

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Moreover when it comes to body areas considered private, some caregivers may

be uncomfortable. One nurse gave this example, “Say if it was a wound care on the

bottom and you have to expose the private areas…caregivers can’t handle seeing that

person in that state.” This nurse also said that some care recipients don’t want their

family members to give them this kind of care.

In cases such as these, nurses said they would assess each situation to determine

the best course of action. In some cases, nurses might try to make other arrangements

such as looking for other family members, neighbors, or friends who might be willing to

perform the care. If they cannot find somebody, and the main problem is caregiver

anxiety or reluctance, for the most part nurses said they would try to teach more slowly,

and go more often. Nurses said they would not “leave caregivers hanging” or as

Josephine said, “You know, we don’t just go in there one time and teach them. We make

sure that they really understand.” Slower teaching often requires calling payer sources to

try and negotiate more visits. This often involves making the case that it is cheaper for

home health to do the procedure than to pay for a re-admission: “Do you want us to send

them back to the hospital or nursing home? Then why don’t you just give me the visit?”

Sometimes nurses said they would have to talk “straight up” to caregivers about

the fact that insurance would cover only so many visits. As one nurse said, you have to

“give them the options. It’s either…your home or it’s a nursing home, extended care

facility, something like that.” One nurse said she talks to families about “being

independent so they don’t end up in a hospital or a nursing home.” As one nurse said, it

is necessary to:

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Give them possible outcomes… Say for a foot wound on a diabetic. ‘If it doesn’t

get done every day, your loved one can lose their foot’… Let them

know…’We’ve got to find somebody to do this and we aren’t allowed to stay in

here past this certain amount of time.’

In cases where someone cannot take over the care, nurses said care recipients may

have to go back into hospitals or nursing homes or in some cases families may hire

private caregivers who are generally paid out-of-pocket. Several nurses said they simply

had to go and perform the care themselves. According to the nurses, doing all of the care

themselves is a rare event. In some of these cases, when agencies cannot negotiate

reimbursement, nurses said their agency would decide to “eat” the cost, but again these

types of events were considered rare. Payer sources being what they are, families are

expected to be “independent” in their care and nurses’ role is very much to teach the

procedures. Nurses say the majority of caregivers do learn the skilled procedures. They

begin performing the work, even if they are hesitant at first. Nurses sometimes feel badly,

though, when caregivers have to learn procedures they are reluctant to do:

Even just a simple insulin injection… you know it’s a needle involved. People are

so afraid of that. ‘I, I can’t do it.’ Well … you are alert and oriented; you have ten

fingers…two hands… Medicare and Medicaid and your insurance says you can

do it; and you have to. And…that’s sad because I don’t want somebody doing

something that they don’t want to do or they’re not comfortable with.

Clearly, the concept of being “willing and able” can be quite fuzzy and the system

is very much geared toward caregivers assuming the labor. Given the current system,

there are few alternatives –either home care is performed or care recipients must go to

hospitals or other institutions. Nurses are often critical when payer sources limit their

ability to teach or come out and perform the labor for longer periods of time –which

would in many cases benefit caregivers and care receivers. Next, I turn to a discussion of

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the major payer sources in the United States and the ways in which they structure home

care labor.

Fragmented System

Caregivers come into a labor process that is not only affected by cultural

ideologies and individual family relationships but also by economic and political

institutions (See also Corbin and Strauss 1988). Health care in the United States is often

criticized for being fragmented and inefficient. Third party payers – generally insurance

companies, Medicare and Medicaid –differ on the amounts and services they will

reimburse, and this affects the length of hospital stays as well as the services provided

once patients are discharged. In 2009, about sixty-four percent of Americans were

covered by private health insurance and thirty-one percent were covered by Medicaid,

Medicare, or Military health care. About seventeen percent or approximately fifty million

Americans were uninsured (U.S. Census Bureau 2010). (Percentages do not sum to 100

as some Americans have multiple providers.)

It is important to understand how payer sources structure home care labor

processes. Medicare guidelines and state Medicaid laws, as well as private insurance

policy specifications, determine the services patients are entitled to – for example, the

number of visits that home health nurses can make. These services affect the amount of

unpaid labor that caregivers perform. The various guidelines mean that reimbursement

and billing processes are often complex and require much documentation and

coordination. In speaking about the often excessive amount of paper work in home health

care, one nurse confided to me, “It’ll drown ya.” Moreover, the variability in the system

means that caregivers and patients are often unaware of the benefits they have or are

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entitled to. In the rest of the chapter, I will give a brief overview of the major payer

sources and show some of the ways they affect at-home nursing services.

Medicare

Medicare and Medicaid were created in 1965 through Titles XVIII and XIX of the

Social Security Act (CMS 2007). They are administered by the United States Department

of Health and Human Services (USDHHS) under the Centers for Medicare& Medicaid

Services (CMS) (CMS 2007). Medicare is a federally funded program that is designed for

hospital stays and short-term rehabilitation stays –it does not cover long-term care.

Medicare covers about 95 percent of the elderly population in the U.S., those of any age

who have End-Stage Renal Disease (ESRD), and many people who are on Social

Security disability (CMS 2007; USDHHS 2008). Parts A and B are most relevant to

home care. Part A includes hospital insurance and pays for inpatient hospital stays, home

health, skilled nursing facilities, and hospice care. Part B covers physician bills,

outpatient hospital bills, and home health and other services not covered by Part A. Part

A is free to most people who are Medicare eligible. Part B requires premium payments

(USDHHS 2008). Part C, the Medicare Advantage program was created by The Balanced

Budget Act (BBA) of 1997 (with modifications in the Medicare Prescription Drug,

Improvement, and Modernization Act (MMA) of 2003) (CMS 2007). The Medicare

Advantage Program is administered by private health maintenance organizations (HMOs)

or preferred provider organizations (PPOs) and often includes extra benefits for vision,

dental and prescription drugs (USDHHS 2008). As of 2007, about eighteen percent of

Medicare beneficiaries were enrolled in private plans under Medicare Advantage (CBO

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2007: 2) Part D, prescription drug coverage, was enacted through the 2003 MMA (CMS

2007).

Because there are costs that Medicare doesn’t cover, people often have

supplemental coverage. Some may have plans for retirees from their former employers

(CBO 2007). Some may choose to buy a Medigap (Medicare Supplement Insurance)

policy from private insurers. These policies help cover costs of coinsurance, co-

payments or deductibles (USDHHS 2008: 13). People with few resources can apply to

their state programs for help and may qualify for state Medicaid. The dollar amounts for

assets and income necessary to qualify for Medicaid change each year. The latest data

available, which pertained to the period of my fieldwork, was 2008, at which time

individuals had to have resources of $4,000 or less ($6,000 if married) and monthly

income of less than $1,190 ($1,595 if married) in order to qualify. Individual states,

however, vary on these amounts and may have higher limits (See HDDS 2008: 14).

Medicare has historically been a driving force in U.S. health policy due to its

conversion of typical fee-for-service medical reimbursements into a standardized

prospective payment system (PPS) (Mayes and Berenson 2006). In 1983, Congress’

adoption of PPS meant that Medicare payments made to hospitals were based on standard

pre-determined groupings based on diagnosis –called diagnosis-related groups, or DRGs.

This reimbursement system encouraged hospitals to discharge patients more quickly and

transfer them to skilled nursing facilities, rehabilitation facilities or home health agencies

which were still allowed to bill based on traditional reimbursement (Mayes and Berenson

2006: 99).

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Due to trends toward earlier hospital discharges, as well as changes in medical

technology, home care agencies experienced dramatic growth in the late 1980s and early

1990s. The 1988 Duggan vs. Bowen court case ruled in favor of a more liberal definition

of “part time and intermittent” services allowed under Medicare and increased home

health visits dramatically (USDHHS 1997; Mayes and Berenson 2006). Between 1988

and 1995, home health care flourished and was the fastest growing segment in the U.S.

health care industry, experiencing a 168% increase in employment (Mayes and Berenson

2006: 99).

This period of growth came to an abrupt halt when Congress, in an effort to

control costs, enacted the Balanced Budget Act (BBA) of 1997. The act effectively

changed reimbursements to home health agencies from a fee for service basis to an

interim payment system (IPS) and finally to a PPS (prospective payment system) which

was fully implemented in 2000 (CMS 2010a). Medicare spending for home health fell

from $14 billion to $9.2 billion between 1998 and 2000 due in part to the IPS, which

contained a per-beneficiary limit (NACH: 3). Moreover, all services and supplies were

bundled into one reimbursement, and blood draws were no longer eligible for home care

services, unless performed in conjunction with another skilled medical need (Library of

Congress 1997). These changes resulted in significant downsizing and closing of home

health agencies that had difficulty with implementation. The number of Medicare-

certified home health agencies fell from 10,444 in 1997 to 6,861 in 2001 (NACH 2008).

The PPS, adopted in 2000, meant that now agencies, like hospitals, were paid fees

prospectively based on Home Health Resource Groups or HHRG’s (similar to hospital

DRG’s.) With the full implementation of PPS, the number of agencies grew steadily and

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reached 9,284 by 2007 (NACH 2008). The BBA and its mandated PPS brought

significant changes to the industry, however. Rather than billing based on the number of

visits to a home, successful agencies had to budget visits and supplies based on a

prospective payment. This caused additional constraints in business practices. Several

nurses, who had been in practice before the PPS implementation, lamented the change,

remembering the times when they could make as many visits as they thought were

necessary. One nurse said, “It was fee for service and you could provide whatever

amount of care for how ever long.” Another nurse who had extensive experience in

home health as both a nurse and an administrator explained that under the old fee for

service if she needed to go into a home fifteen times to teach, she could. But after PPS:

Now I have a diagnosis category and …the HHRG –which is the home health

resource utilization group categories that determine how much I’m gonna get

paid. So, for this same case, I may only get paid $2000 but need to make fifteen

visits. Now you tell me, and you’re paying the nurse $60, $70 dollars a visit.

As one home health nurse manager put it, rather than being paid for visits, “now a visit is

an expense.”

In order to receive skilled services, current Medicare law requires that a person

must have at least one of the following skilled medical needs: intermittent skilled nursing

(other than just drawing blood), physical therapy, speech-language pathology services

and continued occupational therapy (USDHHS 2008: 36). Home-health visits must be

made by a Medicare-certified home health agency and the patient’s condition must

continually improve (CMS 2010b). The person must also be “homebound” meaning that

it is a “considerable and taxing effort” to leave home (USDHHS 2008:37). People can

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generally leave home for “medical treatment or short, infrequent absences for non-

medical reasons such as a trip to attend religious services” (USDHHS 2008: 37).

As noted, skilled nursing services under Medicare must be “intermittent” –

Medicare does not pay for twenty-four hour coverage. Per my discussion with a home

health administrator, as of 2009, if there is a recurring intermittent need for skilled

service (other than just drawing blood), “Medicare allows for twenty-one days of services

or longer if there is a finite end point documented in the initial plan of care”. Combined

nursing and aide services “must be for less than eight hours a day, and twenty-eight hours

per week”. According to the administrator, following hospitalization, nursing and aide

services can occur for up to sixty days if the physician signs the appropriate discharge

form. These sixty-day periods are called “sixty day episodes” and can be renewed.

Medicare does not pay for respite care for the caregiver.

Medicare guidelines also require specific documentation for skilled home health

visits. When home health nurses assess a Medicare patient, they must fill out an OASIS

(Outcome and Assessment Information Set) form. This form – in existence since 1999 –is

used to determine which of the available HHRG’s or case mix groups are added to the

standard payment to determine reimbursement (CMS 2010a). (At the time of fieldwork,

the OASIS form was being phased out and replaced by the new OASIS C form as of Jan

1, 2010.) The OASIS (or OASIS C) must be filed on a timely basis with CMS for all

Medicare and Medicaid patients who are eighteen and older. The appropriate completion

of the form is a large part of nurses’ documentation procedures, particularly on the first

skilled visit. (This was a necessary bane for many of the nurses in discussing the

excessive amount of paper work.) The OASIS data is compiled in a national database,

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allowing customers to check quality measures on the Medicare Home Health Compare

website.

Medicare also covers hospice care when a doctor certifies that a patient is

terminally ill and probably has less than six months to live, and the patient accepts

palliative care (care for comfort instead of a cure) (USDHHS 2008: 38). This diagnosis

can be re-certified (USDHHS 2008: 38). Medicare pays for five days of in-patient respite

care if the hospice staff determines it is needed. The patient pays five percent of the

Medicare approved cost for the hospital stay (USDHS 2008:38).

Medicaid

Unlike Medicare, both the federal and state governments fund Medicaid.

Medicaid expenditures make up a sizable portion of all state budgets, and the exact

expenditures are determined by state legislatures. Individual states manage Medicaid

based on federal guidelines that stipulate the services that must be provided to specific

groups of poor individuals (CBO 2007). The federal government requires that “poor

children and families who would have qualified for the former Aid to Families with

Dependent Children program, certain other poor children and pregnant women, and

elderly and disabled individuals who qualify for the Supplemental Security Income

program” be covered (CBO 2007: 3). Many families and children who are on Medicaid

are covered by Medicaid Managed Care plans which have provider agreements with the

state. About sixty-five percent of Medicaid beneficiaries nationally were enrolled in such

plans as of 2006 (CMS 2007).

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While those on Medicaid generally have low income and few assets, states have

flexibility to determine the exact eligibility rules, and there is great variability by state.

States can also obtain federal waivers that allow them to cover individuals who would

ordinarily be excluded under Medicaid rules (CBO 2007:3). The rules are often quite

complex and the variation in state Medicaid programs adds further fragmentation to the

American health care system. For example, I heard stories from nurses and social

workers about patients or clients who had moved across state borders and found that they

were not eligible for the same benefits as before.

In order to better understand Medicaid eligibility requirements for skilled nursing

in home health, I investigated the Medicaid rules in one Midwestern state through

discussions with a Medicaid administrator, home health administrators, social workers

and caseworkers, a review of documents, and attendance at a state home health

conference. In order to meet Medicaid requirements in that state, there must be at least

one skilled service per week and the home health provider must be a Medicare Certified

Home Health Agency. As of 2009, that state’s home health services allowed for

intermittent (defined as less than four hours per visit with a two hour break in between)

combined skilled nursing and aide services of no more than eight hours per day and

fourteen hours per week. The services could not be for respite or habilitative care. After

hospitalization, the state allowed twenty-eight hours a week of combined nursing/aide

services for a maximum of sixty days. In order to qualify, the hospital stay (including

direct transfers to rehab) had to take place over at least three days and a physician had to

certify the patient’s medical condition as comparable to an institutional level of care. To

fulfill federal requirements, children up to age twenty-one who need part time

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intermittent services, have a comparable institutional level of care, and need at least one

skilled service per week receive increased services above these limits regardless if they

have had a hospital stay.

If a person requires a continuous (rather than intermittent) skilled level of care,

private duty nursing (pdn) services of more than 4 hours but less than 12 hours at a time

are provided for a maximum of fifty-six hours per week for sixty days following a three

day hospital stay (or direct transfer to rehab). This is when there are reasonable

expectations of improvement, such as wound care or IV therapy. (This service can be

provided for purposes of respite care, but not for maintenance or habilitative care.)

Medicare Certified Home Health Agencies, other accredited agencies, and non-agency

nurses (independent providers or “ips”) can provide private duty care. Private duty

nursing is also available for adults and children who have a medical necessity and a

comparable institutional level of care and have not recently had a hospital stay. These

services can be for maintenance and respite care but not for habilitative care. At the time

of fieldwork, services were generally authorized for no more than one year at a time.

In addition to state Medicaid home health services, there are various Medicaid

waivers that may apply in particular circumstances. In the Midwestern state I

investigated, a home health waiver is available for skilled nursing and other services for

persons with severe medical conditions or disabilities. In these cases, the person may face

institutionalization without waiver services. Waivers can provide skilled nursing services

for children of parents with higher income than normally allowed under Medicaid, if the

child’s medical need meets state mandates. The number of slots for such waivers,

however, is limited. As a hospital nurse with a long career in home health explained:

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There are so many waiver slots per year… So…say there’s twenty. If on a yearly

basis the twenty patients that are receiving that still qualify the next year, then

there are no new slots to open up for new families to get it. So it’s unrealistic to

think that if you have a new patient that’s going home on a complex therapy that

they would get a waiver. And we tell families that. We always tell them to apply

for it. And … to see what happens, but there’s no guarantee.

One caregiver in this study had tried two to three times to get a waiver for her

child but was turned down. She said:

I guess basically what it amounts to …is you’re just put on a waiting list. Doesn’t

really matter what your need is, how critical your need is, how minimal your need

is, you’re just put on a waiting list and when a slot turns up …so you know it’s

just pick a number stand in line kind of thing.

She finally received the waiver after a friend, who is a nurse, urged her to file

tenaciously.

(She) got me one of the applications and I made like thirty copies of it. And she

said, ‘Send one in once a week.’ So I sent one in for quite a while...till apparently

my number came up…But they had sent me a letter and said that there were about

twenty different openings in the program, so something –funding –changed there

somewhere.

Based on my discussions with nurses and nurse administrators, it is notable that

insurance companies generally have only limited –if any – provisions for continuous

skilled nursing. People with such needs, generally end up applying for Medicaid or

Medicaid waivers. A large problem for people in this study, however, was that they

didn’t know about waivers and other services that were available to them and didn’t

apply for them when they could have. One caregiver said she was just “randomly talking

to a woman” that served on a committee with her when the woman asked her why she

didn’t have a Medicaid waiver for her child. She was quite taken aback, as she told me,

“I’m like ‘I don’t know what that means.’…No one told me about it!’

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Moreover, some caregivers also had bad experiences when they went to Medicaid

offices to apply for waivers. One caregiver was grateful that her home health nurse told

her about waivers and gave her advice on how to apply:

Part of what they (the home health nurses) did…was to start to tell me about

services. And they said, ‘Oh you need to go apply for Medicaid and ask for a

Medicaid waiver.’ And they said, ‘No matter what, do not leave until you get with

someone who has you fill out the application for the waiver.’ …They kept

stressing that, I thought, ‘Why are you doing this?’ So I went down to the

Medicaid office and then went through the whole process and then said, you

know, ‘I need to apply for the waiver.’ And they said, ‘We don’t know what a

waiver is.’ And I said, ‘Well they told me it’s a Medicaid waiver for medically

fragile children.’ They’re just insisting, ‘No’. And I said, you know, ‘Can I talk to

a supervisor?’ And …so the supervisor came, she said, “Oh yeah, yeah, yeah, we

do have waivers.’ So without the nursing agency telling me that…first of all I

wouldn’t have known to ask for it, and then if they would have said ‘we don’t

have it’ then I would have let it go and who knows how long it would have been

before eventually I would have found out?

Thus, while some states have waivers as well as additional services or resources,

which cover expenses not covered under Medicare and Medicaid, caregivers are not

always aware of them. One caregiver cared for her son, who had a severe brain injury,

for four and a half years before finding out from a social worker at a doctor’s visit that he

was eligible for a waiver. In addition, if she agreed to take classes and train as a nurses’

aide, she could be paid for some of her care work through a state program. She said she

“had no clue” these services were available and would have appreciated knowing because

her son had experienced extreme financial difficulties since his accident and had to file

for bankruptcy.

Thus, the fragmented nature of payer sources greatly affects patients and

caregivers who often negotiate systems with limited knowledge. Moreover, waivers,

programs and services vary by state and are subject to government funding decisions.

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Insurance

Unlike Medicare and Medicaid, which have specific legal mandates for coverage,

private insurance coverage is specified within the particular policy. Insurers contract

with employers or directly with consumers. Approximately fifty-six percent of

Americans on private insurance are in employer-based plans and about nine percent are

in direct purchase plans (U.S. Census Bureau 2010). The most common type of

employer- based plans are Preferred Provider Organizations (PPOs) (fifty-seven percent

of enrollees) and Health Maintenance Organizations (twenty-one percent of enrollees)

(Kaiser 2008). In PPOs, consumers are encouraged to choose physicians who are within a

network of providers –the PPO itself does not actually provide health coverage; HMOs,

on the other hand, serve as both insurers and direct providers or arrangers of care (Kaiser

2008).

Private health insurance coverage, including that for home health care, varies

widely in the United States, and insurance regulation has historically been left up to the

states. The National Association of Insurance Commissioners (NAIC) was established

in 1871 to coordinate state insurance regulation, and the role of the states as primary

regulators was officially codified in the 1945 McCarran-Ferguson Act (See Kaiser 2008;

Jost 2009). State insurance departments regulate companies by requiring them to

periodically file policies. They also have the authority to conduct audits, issue fines or

“cease and desist” orders, or revoke the licenses of companies that do not comply

(Kofman and Pollitz 2006).

Although regulation is largely in the hands of the states, three important federal

laws do apply. The Employee Retirement Income Security Act (ERISA) of 1974 requires

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that employee benefit plans have written documents, that they issue a summary plan

description to enrollees telling them about their benefits and obligations, that fiduciaries

or those who manage the funds act responsibly, and that there are procedures for making

claims and appealing denials of benefits (Kaiser 2008). Under ERISA, states are allowed

to regulate policies purchased by employers, but employers who self-insure are not

regulated by states (Kofman and Pollitz 2006:6). The Consolidated Omnibus Budget

Reconciliation Act of 1985 (COBRA) amends ERISA for plan sponsors that employ

more than twenty employees and mandates that insurance coverage in specific instances

(for example divorce, termination of employment, death of employee, or legal separation)

be continued for the effected individuals for a period of eighteen to thirty-six months

(Kofman and Pollitz 2006; Kaiser 2008).

The Health Insurance Portability and Accountability Act (HIPPA) of 1996 also

has important consumer protections. It applies to group health plans, even those who self

insure, as well as state licensed insurers (Kofman and Pollitz 2006; Kaiser 2008). It limits

periods for preexisting conditions to no more than twelve months (eighteen months in

certain cases) and provides further protections for those leaving group plans (Kaiser

2008:18). It also prohibits insurance companies from denying coverage to small

businesses (defined as two to fifty employees) based on the medical condition of their

employees (Kaiser 2008:18). In general, state-licensed insurers providing group coverage

and employee welfare benefit plans cannot consider “the health status of a member of the

group in determining the member’s eligibility for coverage, premium contribution or

cost-sharing requirements” (Kaiser 2008:19). HIPPA also prohibits insurance companies

and “certain employee benefit plans” from terminating coverage at the end of a policy

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period except for reasons such as nonpayment of premiums or fraud (Kaiser 2008). Both

the states and the federal government enforce HIPPA and most states have enacted laws

that codify HIPPA protections (Kofman and Pollitz 2006). HIPPA leaves the regulation

of premiums that may be charged for those with high medial needs up to the states

(Kofman and Pollitz 2006).

For the small group market, most states have enacted rating reforms through use

of rate bands which limit the premiums a policy holder can be charged and community

rating which requires that premiums be based on the collective claims of everyone with

such a policy, not just the individual (Kofman and Pollitz 2006:3). The rating regulation

rules vary significantly by state and change with legislative actions (Kofman and Pollitz

2006).

In addition, each state has their own standards as to which medical services

health policies must cover. These “mandated benefits” vary widely and generally pertain

to small group and individual markets (Kofman and Pollitz 2006: CAHI 2009). As of

2009, twenty states had passed mandates for home health care and twelve states had

passed mandates for hospice care (CAHI 2009). In an issue brief from the

Commonwealth Fund, which conducts research on health issues, Frey et al (2009)

compare the state mandates for individual and small group policies with the more

standard benefits offered by the Federal Employees Health Benefits Program (FEHBP)

Blue Cross and Blue Shield Standard benefits. [The FEHBP is similar to standard

benefits offered by most large employer-sponsored plans (Frey et al 2009: 2).] They

conclude that in most cases FEHBP standards meet or exceed state mandates. Home

health, however, is an exception. It has wide variability by state and some states require

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greater coverage than what is in the FEHBP plan. While the standard FEHBP (which,

again, closely approximates the coverage in most large employer-sponsored plans) covers

home health nursing for two hours per day up to twenty-five days annually, home health

mandates in Massachusetts, for example, require that insurers cover all home health

services that are in accordance with a treatment plan. Wisconsin requires coverage for at

least forty visits, and Texas sixty visits per year (Frey et al 2009:4).

Importantly, after my fieldwork was complete, Congress enacted the 2010 Patient

Protection and Affordable Care Act (PPACA). This act provides additional important

consumer protections and immediately eliminates the use of pre-existing conditions for

children under nineteen. The act calls for pre-existing conditions insurance plans (PCIPs)

for adults and completely bans all such pre-existing conditions by 2014. It also bans

annual and lifetime limits on coverage and allows children to remain on their parents’

insurance policies until age twenty-six (USDHHS 2010).

Obviously, the differences in state regulations and mandates as well as specific

policy guidelines mean that private insurance has a high degree of variation. What we can

say is that in general, home health visits are limited and home health agencies must get

approval for the number of visits they make. Many of the nurses I spoke with talked

about the necessity of calling insurance companies for approval of extra visits if

caregivers or patients needed more time to learn techniques or required additional support

–and this was sometimes a battle. One nurse described the process like this:

They think something can be done in three visits and, ‘That’s all I’m gonna pay

you, is three visits.’ You know cause insurance still pays basically per visit –they

don’t go to the diagnosis categories. So they…will say…- you know like name

that tune in five notes – ‘I will give you five visits. You get it done and if you

need more you have to call me and tell me.’

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Another nurse indicated that negotiating with insurance companies could be quite

frustrating at times:

And…there’s lots of times when you’re talking, you know, and dealing with

insurance companies…it’s someone sitting on the…other end of the phone, sitting

behind a desk, and it’s like, you know you can hear ’em pecking… (pecks with

finger on table to mimic an adding machine). (They) say, ‘Well this is what we

can do.’ It’s like, ‘Well, I don’t care what you can do, this is what we have to

do.’ And then you feel like telling ’em…you know, ‘You want me to half way do

what I’m supposed to do and then you’re gonna end up -this patient’s gonna be

back in the hospital and it’s gonna cost you more money in the long run.’

Though nurses said they were often able to arrange for more visits, and some said

they had developed relationships with insurance providers that made the process

smoother, this was not always the case. One nurse told of a man who did not have an

adult caregiver in the house, and had to give himself multiple IV injections. His insurance

company allowed only one home health visit.

I can remember…being given one visit to teach a man to do his own IV

care…and that was change his own PICC (peripherally inserted central catheter)

line dressing, administer it and do everything. And I was ill…I felt horrible for

that man. I mean that’s a sterile procedure… And he had to change his own PICC

line dressing and that was in his dominant hand and the insurance company

authorized one visit… he just had really bad insurance.

While many of the caregivers I spoke with were glad to have “good” insurance,

and the need to maintain such coverage was an important factor in making job-related

decisions, some did believe that insurance company limits posed difficulties, and several

talked of having to stand up or fight for things. For example, one woman told of how her

son, who had a spinal cord injury, was to be released from rehab, even though he still had

a bad bacterial infection. Their car ride home was three hours and she was afraid he

would have an accident on the road and she would not be able to help him clean up in the

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car. She said it was a matter of being “observant enough to know …that is not gonna

work…and standing up for yourself and saying, ‘No we’re not doing it.’” At her

insistence, the insurance company ended up extending his stay for another week until the

infection cleared.

Others talked of how insurance denials for pre-existing conditions had been

difficult for them or were potentially problematic if they wanted to move or change jobs.

One woman said that after her family moved to a new state for her husband’s job, the

insurance company accepted everyone except her son, who had a severe brain injury. She

states, “They accepted everybody except him –they said, due to the preexisting condition.

And …we had no medical care for him. And you know, he needed his seizure med and

we couldn’t afford it.” (As noted discrimination against children who have pre-existing

medical conditions was made illegal in the 2010 Patient Protection and Affordable Care

Act and will be effective for adults in 2014.) Indeed, insurance, though offering good

benefits for some, has a wide degree of variability and can pose difficulties when

coverage is limited or denied. Because policies are not uniform, services and benefits

affect each patient and their caregivers differently.

Implications of Payer Sources and Home Health

Overall, complexity and fragmentation make American health care payer sources

extremely difficult to understand. Because different government and private agencies are

involved, navigating the system can be overwhelming. Caregivers often talked about the

complexity of figuring out payer sources. While referring to government benefits, one

father joked, “If you figure it out, let us know!” On several instances, caregivers referred

to Medicare or Medicaid interchangeably or didn’t remember the specific names of the

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Medicaid waivers their loved ones were on. This is quite understandable –because of the

variation, comparability is difficult and there is not a national discourse as to what home

health benefits should be. In the United States, people often find themselves in health

situations first, and then try to figure out the patchwork system later. Moreover, due to

the cultural pervasiveness of individualist ideologies that value personal responsibility,

Americans often envision a limited role of the state when it comes to health care (See

Levitsky 2008).

Despite the confusion between Medicare and Medicaid, as seen, there are

significant differences in the two, not only in the funding source, but also in the coverage

and guidelines. For example, in Medicare a person must be homebound to receive skilled

nursing, but this is not the case in the state-specific Medicaid laws I investigated. Also,

there are differences in what nurses are allowed to do. In the state I analyzed, nurses are

reimbursed for setting up pillboxes, but Medicare law does not allow this as a skilled

service. Under Medicaid, caregivers told me they were required to pick up their own

supplies. Under Medicare, supplies are bundled and provided, but patients may have to

pay out of pocket if they prefer a different type. Medicare also allows home health aides

only for services that support skilled nursing care (CMS 2010b), but states have various

regulations and programs that may allow home health aides.

It is also not uncommon for people to have multiple payer sources. For example,

elderly persons may have both Medicare and Medicaid; and some parents retain

insurance coverage but have children who qualify for Medicaid waivers due to severe

medical needs. One nurse administrator and a social worker I spoke with said that the

multiplicity of payer sources often complicates reimbursement. I saw this with some of

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the caregivers I spoke with. For example, one woman’s child was covered by her ex-

husband’s insurance policy, as well as Medicaid. Medicaid would not approve an

antibiotic to be administered at home until they got a decision by the insurance company

first. The insurance company delayed its decision for three days and the doctor finally

said she would admit the child to the hospital if they did not approve it. After this

standoff, the approval finally came. The caregiver said she felt as if she was “always

fighting everything.”

It is notable that Medicare and Medicaid coverage (depending on the particular

state) may be more generous than health insurance policies in some cases. For example,

the type of private duty nursing services for those with continuous rather than intermittent

needs made available through Medicaid waivers, are generally not allowed by insurance

companies, or are allowed for only relatively short periods of time. These waivers,

however, have a limited number of slots available and many caregivers did not know

about them or found out in haphazard and unsystematic ways.

It also appears that in some cases Medicare and Medicaid may allow more home

health visits, and thus more time for teaching than some insurance policies. (Note: this

may vary widely by state and by insurance policy). However, there are several points to

keep in mind. First, although government guidelines may be more generous in certain

cases on the number of visits allowed by home care nurses, the nurses and administrators

I interviewed stated that regardless of payer source, the general goal of home health care

is to make families “independent in their care”. Nurses stated that caregivers are

evaluated the same regardless of payer source and that the goal of home health care is to

teach, rather than perform care. Multiple sources confirm that this is very much the trend.

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Second, government health care is subject to legislation changes and may vary

considerably as federal or state budgets experience cuts. Third, Medicaid covers those

who live in poverty or are on waivers due to extreme medical disability and this can pose

additional issues of its own. In this study, nurses and home health administrators spoke

about the slow-paying nature of Medicaid, particularly if it is managed by HMOs. One

caregiver said she had home care services dropped in her state because Medicaid did not

reimburse the agency in a timely manner. Moreover, the Medicaid reimbursement rate is

often lower than the rate for other payers. According to discussions with social workers,

people on Medicaid may experience more limits on providers, and may have difficulty

crossing state borders to receive care. Medicaid is also generally tightly controlled. For

example, caregivers said they needed prescriptions for every supply and that pharmacies

would not fill medications until they had only a few days left. Said one caregiver, “They

won’t refill, depending on what the prescription is, until you have a minimum, like three

days. So it’s like, I’m in the pharmacy four out of five days a week.”

As seen, the patchwork system of payer sources greatly affects caregivers and

nurses as they work within a myriad of guidelines and limits. I revisit these again in later

chapters. In the next two chapters, I explore home health nurses’ experiences in teaching

home health care labor, and caregivers training experiences in hospitals and at home.

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Chapter 4: Nurses’ Labor: Skills Transfer, Identity, and Emotion

The transfer of labor from paid professionals to lay persons has received scant

attention in the sociology of work literature. Glazer’s (1993) study of the “work transfer”

of skilled nursing to lay caregivers focused on the cost savings realized by capitalist and

state organizations as (mostly) unpaid women assumed the work once provided by paid

professionals. In one of the few empirical studies of this transfer, Ward-Griffin and

Marshall (2003), following Glazer, studied 23 Canadian female caregivers of the frail

elderly and their home health nurses. According to the authors, nurses were able to

gradually transfer skilled labor to caregivers over time through strategies such as “gently

encouraging” or “forcefully ‘pushing” caregivers to learn; and “if the caring work

appeared too difficult or technical, nurses simplified or ‘downplayed’ these aspects, or

they would insist that the caregiver was ‘smart enough’ to learn” (2003: 199). Ward-

Griffin and Marshall argue that nurses were “ideological workers” who were able to

influence caregivers through “covert forms of power –particularly at the ideological

level” – regarding caring as naturally female and part of family obligations (2003: 201).

The authors caution that their study is socialist feminist in nature, and has limitations in

that it emphasizes oppression (in this case of caregivers) without considering individual

agency or resistance strategies (p. 204).

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While structural factors such as cultural and gender ideologies certainly shape the

expectations and actions of both nurses and caregivers, an overly structural view obscures

the dynamics of relationships, emotions, identities and the agency of actors. These related

processes are crucial in understanding how nurses transfer skills to caregivers. Moreover,

we need a greater understanding of nurses’ emotional labor –an important and integral

concept in the sociology of work. This chapter seeks to gain a broader understanding of

how nurses transfer skilled labor through analyzing how they feel – and taking a closer

look at nurses’ identity, their emotional labor and their interactions with caregivers and

care receivers.

Ideological Roots or Immediate Needs

I have argued that a coercive kind of labor, which invokes cultural gender

ideologies in the labor transfer and features nurses as “ideological workers” (Ward-

Griffin and Marshall 2003: 201), is a one dimensional view of the labor process. It is

certainly true that gender ideologies affect both nurses and caregivers (See Chapters 7

and 3) as they do all of us, in ways that shape the division of labor in both personal and

professional lives. Gender is embedded in organizations (Acker 1990) –such as hospitals

and the medical establishment. These influences affect our work patterns and the cultural

notions that define “women’s work”. In these ways gender is everywhere –though often

silent.

Overly structural views, however, prohibit us from understanding the agency and

interpretations of actors. It appears from analyzing the interview data that nurses did not

generally evoke gender ideologies as a rationale in discussing the transfer of labor.

Rather, many of the nurses understood the reality that caregiving falls disproportionately

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on women. Nurses generally referred to caregivers as “she” reflecting both their

experience, and the more likely scenario. When I asked nurses if most of the caregivers

they teach are women, most all said “yes” but several countered that they do teach a

considerable number of men how to do skilled nursing. One nurse said, “I have had a

very good variety between men and women” and another said, “I think that I have more

men than women right now.” In general, most said that they have taught men to do

skilled caregiving and that often men do a fine job – “they take very good care of their

loved ones” (Mildred). According to Les:

I’d say the majority are (women), but there’s a lot of men that learn. Yeah, the

majority are the wives or daughters or daughter-in-laws. But I’ve seen husbands

and, sometimes sons … I’ve seen elderly men taking care of their bed bound,

stroke, wife, you know…forever…I’ve seen younger men do the IVs for their

wife.

One nurse commented that while “a husband may expect a daughter to help more

so…than…a son” who will do the care depends on “a person’s sense of closeness with a

family member or sense of responsibility of helping.” While a few nurses did comment

that women were “naturally nurturers”, many nurses were skeptical of such ideological

generalities. For example, when I asked one nurse if most of the caregivers she teaches

are women she replied with a slight laugh, “Yeah, how convenient, huh?”

In speaking of the labor necessary to maintain people in their homes, as well as

potential obstacles in caregivers learning the labor, nurses also did not generally make

arguments that indicated that they “downplayed” the complexity of the labor. Although

the nurses in this study did try to use a common language or “put the skills into a context

caregivers could understand” [This may be similar to Ward Griffin and Marshall’s (2003)

findings that nurses used a strategy of “describing skills in a simplistic way” (p. 199)],

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the nurses I interviewed appeared to focus more on downplaying their status differences

with caregivers. They talked about having “common goals”, not wanting to overuse

medical language or “talk over their heads” (See Chapter 5). Nurses said they used

encouragement and praise to build caregivers’ confidence while simultaneously

recognizing the seriousness of the labor and the complexity of performing such labor at

home. In talking about IVs one nurse described her feelings in the teaching process:

IVs…that’s usually one of the more complex things that you have, and people are

intimidated by it… And the equipment and everything is so overwhelming to

them.

One nurse said she worried particularly about PICC lines because “infection is

sooo easy”. Another talked about potential complications:

They could forget to prime their tubing because you forget to do things when

you’re nervous and it’s your first couple of times. You could kill somebody with

an air embolism…

Thus, nurses recognized the inherent risk and skill required to perform skilled home care,

but believed that most caregivers could be effective in learning the labor – as long as they

were willing and given enough time.

In terms of direct communication with caregivers, nurses were more likely to

draw on their feelings that families should be “independent” in their care. While the

broader notion of “independence” is obviously rooted in cultural ideology (which is

entangled in gender ideology because “independence” requires unspoken work) it is the

realities of payer sources (no doubt influenced by ideology), which most structured labor

processes. As seen, however, nurses were often at odds with these limitations. (See

Chapter 3).

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It was the immediate needs of care receivers that nurses often evoked in their

discussions of the labor transfer. For example, while nurses were often critical when

patients were sent home without proper instruction, “too soon” or when coordinating

services or getting doctors orders were difficult, they expressed their beliefs that, if at all

possible, individual care receivers are better off at home, gaining independence in their

health. They are “less anxious” in their own homes, they have “more freedom”, they are

“more relaxed”, they can “get more rest”, and they “can heal better”.

Nurses also believe that they are better able to relate to patients’ and families

emotional needs in the home. This was very rewarding to the nurses and they saw this

connection as central to good care and essential to occupational feeling rules. In the

hospital “You have a different nurse everyday –and even the doctors aren’t your family

doctor anymore.” According to Rachel, “You can focus all your attention on that

problem, that person, and they get better mental care because that call light isn’t going to

go off.”

According to one nurse:

It’s not, ‘I got that blood sugar that needs checked, I’ve gotta discharge, I got an

admit, I got a transfer.’ I mean, you still have that in home care. And…the paper

work is more so in home care, but it’s not like on the floor where you have eight

patients, one nurse, call lights going off constantly. I know when I have that one

patient, they have my undivided attention and so does their family. Their

emotional needs get met. They don’t in the hospital and I know that.

And another:

In the ER, you just did your thing with one patient. You didn’t remember a name.

You couldn’t put a name with a face –oh the chest pain guy in room whatever….

These people, you know, you go into their homes and they try to serve you coffee

and donuts or cookies… and you sit there and you talk with them and their

family… Then you have the ones that come in and you know right off the bat you

gotta five 'em a hug when you get there or give 'em a hug when you leave.

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Not only did nurses express that the home environment allows them to better meet

emotional needs, they also believed that patients are safer at home because “you don’t’

have all those germs floating around” – particularly “super bugs” or hospital acquired

bacteria:

When you go to your own home, you have germs but they’re your own germs…

…Something…that’s sterile in the hospital might not be sterile in the home. You

try to keep it sterile but it’s their own germs…In the hospital there’s so many

people coming in and out and there’s other patients that have…hospital-acquired

germs. (Christine)

People –they do better in their homes. It’s just they’re more comfortable in their

homes. In the hospital you have to worry about the nosocomial (hospital-

acquired) infections and you know all that kind of stuff. In the home –as long as

their home’s relatively clean –it usually doesn’t seem to be that big of a deal. But

just –everybody’s more comfortable in their home. They’re happier. They just

seem to do so much better than being in a hospital or a nursing home. And you’re

in there, you’re looking at the same four walls everyday so everything is the same

color and you know somebody tells you when you eat and what you eat. And at

home you can pretty much do whatever. And I just, I think if somebody can be at

home, then they should be at home. (Josephine)

The prioritization of patients –their physical and mental health –is a key part of

nurses’ professional identity. We turn next to understanding how nurses’ professional

identities and their emotional labor impact the “work transfer”.

Caring Identity, Holistic Nursing and Autonomy

The sociology of work has long examined identity formation in workers.

Burawoy’s (1979) analysis of shop floor dynamics showed how workers identity

stemmed from the games they played in the course of their labor –games which served to

legitimate their exploitation. In the service economy, Hochschild’s (1983) work in the

airline industry demonstrated how air line attendants suffered a loss of identity and

alienation when they performed “deep acting” to align their emotions with the mandates

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of their employers’ “feeling rules”. Work post-Hochschild has offered numerous

critiques of her theory including the need to consider employee coping mechanisms,

employees’ enjoyment of work and the positive effect of work on identity (Tolich 1993;

Bolton and Boyd 2003). Moreover, in the study of health care aides, Lopez (2006) found

that nursing homes, which were managed under a model of “organized emotional care”,

provided an environment that allowed staff to experience authentic caring in their

relationships with patients. More recently, Stacy (2011) found that home care aides,

though experiencing burnout and stresses from emotional labor, also experienced genuine

satisfaction in helping patients and found dignity (Hodson 2001) and deep meaning in

their care work.

In examining the “work transfer” in service work, Robin Leidner questions how

organizations draw in unpaid workers and notes that in cases where there is a great deal

of variability, they try to develop their workers into “the sorts of people who will make

decisions the employers will approve” and this may involve intense training in order to

transform employees on and off the job (1993: p. 37). In discussing insurance agents for

example, she says employers hire workers they can “count on to provide appropriate

emotional labor on their own” and that “workers who have clear incentives to manage

interactions with customers in ways their employers prefer, such as those whose earnings

depend on commissions, will require less supervision of their emotional labor than those

who do not have a stake in the outcome of service interactions or those whose interests

diverge from employers”. (1999: 84-85)

Nurses have incentives to get families independent for two main reasons. First, as

we have seen, they are acutely aware that payer sources dictate the number of times they

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are allowed to make home visits, or the amount of money their agency will be

reimbursed. Nurses understood the business side of care. “We document for dollars.”

“We couldn’t stay in business if we went out everyday.” However, although nurses

acknowledged such business realities, and sometimes were at odds with them, it was the

prioritization of quality patient care as essential to their identity and to their fulfilling of

professional occupational rules that was most salient:

I realize who I’m employed for. But the reason I’m employed…is because of

these patients. If it wasn’t for the patient, I wouldn’t be employed, period. And

my main goal as a nurse is to come in and take care of the patient.

Second, and perhaps more importantly, nurses truly appear to believe that patients

are better off and have better outcomes at home than in institutions. It is true that nurses

are very aware that good patient outcomes also meet their organizations’ goals and satisfy

Medicare requirements– as measured in OASIS data and posted publicly on the home

health compare website. However, although a few nurses talked about how good

relationships are essential to make sure the customer is satisfied, or “I don’t get any bad

feedback” (what Bolton calls prescriptive emotional labor) in general, it appeared that

they tied relationship much more to good nursing practice and the establishment of

authentic relationships.

Indeed, nursing scholarship has long held that caring is at the core of nursing

professional identity and “sentimental” work (Strauss et al 1982) is often noted as an

important component of nursing practice. Sharon Bolton, who has extensively studied

nurses’ emotional labor and identity, maintains that nurses are skilled “emotional

jugglers” who are able to adapt emotional labor to the situation at hand, without

experiencing negative impacts on their identity (2001). Drawing on Fineman (1993), she

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finds that nurses have a “professional face” which allows them to care while remaining

distant. Bolton (2000) maintains that this face allows nurses to show kindness and

professionalism without giving into feelings of anger or sorrow (p. 583) and referring to

Lawler’s 1991 work, she maintains that “ nurses’ skills in emotionally managing

potentially awkward or embarrassing situations are a vital part of the caring

process”(p.583). Bolton finds that nurses use “many faces” in relation to their emotional

labor (2001). Not only do they use a “professional face” they also use a “smiley” face –

in which they put on appearances to avoid customer complaints and a “humorous face” in

which they experience true social interaction and often give emotional gifts to patients

(2001). Thus, nurses “juggle” appropriate faces and seek to balance their professional

demeanor with showing concern for the patient (Bolton 2001: 91).

However, Bolton also finds that the nurses believe that it is “authentic caring

behavior that distinguishes nursing from other professions” and that if “they were able to

be emotionally uninvolved then they ‘shouldn’t be on the job’” (p.583). According to

Bolton, nurses see caring as a central component of quality care and while it causes them

anxiety, “they also see he emotional stresses of the job as bringing the greatest potential

for job satisfaction” (p.584). She finds that although British nurses working in a

gynecology unit “worked hard to present the detached face of a professional carer,” they

also experienced authentic relationships with patients, and offered them extra “gifts” of

time (Bolton 2000: 580).

In later work with Boyd (2003), Bolton critiques Hochschild’s notion that

emotional work is always done for the good of the company, and depicts four separate

categories of emotional labor. The first is prescriptive (in response to commercial

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demands), the second is pecuniary (in response to professional demands), the third is

presentational (“the basic socialized self”) and fourth is philanthropic (giving emotions

as “gifts”) (2003: 295-297). Bolton sees authentic relationships as taking place in private

“unmanaged spaces” -free spaces outside employer mandates (2003: 303). Other scholars

have used these categories as a useful rubric. For example, Lewis (2005) shows how

neonatal nurses dealt with the tensions between “masculinized” prescriptive

organizational demands and the philanthropic, true “gifts” given to patients and families.

Identities rooted in caring, and the prioritization of relationship in nursing, are

consistent with nursing scholarship on “primary nursing” (Porter 1992, Smith 1991),

which has advocated patient centered versus task centered labor processes (Bolton

2001:91). Scholars refer to the “new nursing” or nursing practices that recognize a

holistic and authentic relationship with the patient as an important component of nurses’

labor (Bolton 2000: 581; Aldridge 1994; Smith 1991. See also Daykin and Clarke

2000:354). This concept also reiterates that patient/clients should be responsible for

themselves –not “passive” or “done to” (Aldridge 1994: 724). The nurses I spoke with

often talked about their own identities as rooted in caring for others, and said this was one

of the primary reasons they got into the nursing profession. According to Ruth:

It’s the satisfaction of helping people, you know? That’s why I went into it…I

like to help people…It’s my passion. It’s what God has designed me to do.

Some nurses acknowledged that while they needed the money their job provides,

their main reason for entering nursing was caring for others, and a few distinguished

themselves from others who were “in it for the money”:

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I got into nursing for the people…Ever since I was little, you know, you’d see the

little turtle with the broken leg and want to put a Popsicle stick on it and fix

it…It’s just –some people are in it for the wrong reasons.

One nurse described how she often calls and checks in on patients. She had

recently visited a patient in the hospital after surgery – something she said she wasn’t

required to do, but wanted to. When I commented that it sounds like she gives extra time

she is not really paid for she said:

I’m a sucker (laughs)…I mean that’s why I’m a nurse. It’s just the caring part of

it. I mean I know I’m not obligated to it, but you know everything doesn’t have to

be about money either. I just … I always look at everything from my aspect. If

that was my parent or my son or daughter, how would I want them to be treated?

The caring ethos of nurses, coupled with what they perceive of as an

advantageous home environment for most patients –one in which they can see patients

holistically and which fosters greater relationship potential – means that home health

nurses see home health as an important dimension in patient care. Most of the nurses I

spoke with believe that home health nursing extends their ability to provide quality care,

and most all preferred home health work over hospital work because of this. Getting to

know the “whole person”, and seeing their health in a “holistic” context were extremely

important to the nurses I interviewed (See discussion in Chapter 7.) These findings are

consistent with those by Luker and colleagues (2000) who found that community

palliative nurses in England felt they were better able to realize patients’ “uniqueness”,

experience patient relationships, and “get to know the patient” thus achieving central

components of the “new nursing” process (2000: 776).

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Not only did the home health relationships with patients and families foster

nurses’ professional identities, they also experienced a great deal of job autonomy and

expressed that autonomy and flexibility were key features that provided job satisfaction.

I like the freedom. I like the- you know, you can be at the park and do your

documentation over the phone. You know you’re not in the hospital. (Ruth)

(I like) the flexibility that you get with home health care… you can arrange your

schedule. (Jamie)

Thus, although payer sources sometimes threaten autonomy, nurses believe they

have much more freedom and flexibility than in a hospital. Most are able to set their own

schedule based on patient needs. Nurses commented that home health nurses must be

“independent” and must have extensive experience before going into home health. They

have a “unique personality” and are a “special breed” because they are able to work

unsupervised. As one nurse said, you have to use the resources in the home to accomplish

the task and “you’ve gotta be prepared to make something out of nothing.”

To be a home care nurse you have to be competent in your skills, in your

judgment, in your critical thinking. You have to be able to rely on yourself, be

autonomous…You’re a phone call away from help, (but) it’s not like you can run

down the hall and say, ‘Can you come help me with this?’

Nurses are the key liaison between care receivers and doctors – who are often

distant. A few described “having to paint a picture” of care receivers’ health and the

home dynamics in order to get appropriate doctor’s orders or authorizations for future

visits. This places nurses in a unique position to see first hand how care receivers’ fare in

their own environment, and nurses believe they have a unique window into care

recipients’ health (See also Marrone 2003). This sense of control may help to reduce

negative aspects of emotional labor and job stress (See Wharton 1993). The importance

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of independent assessment by home health nurses is seen in a recent movement by the

American Nurses Association (ANA) – in which they have asked Congress to pass the

Home Health Planning and Improvement Act, which would allow advanced practice

registered nurses, nurse practitioners and other nurse specialists to write orders for care

plans and certification of home care services for Medicare patients (ANA 2012).

Teaching and Caregiver Relationships

As seen, nurses believe under the right circumstances, care receivers are better off

at home, and the personal interaction and window into patient health enhances their

professional identities. The relationship between nurses and caregivers also changes

because it is structured by the assumption that caregivers will take over the labor.

Scholarship has identified that relations between caregivers and nurses in institutions can

be fraught with tensions and that “holistic” nursing practice is often at odds with the task

processes that need to be accomplished in the hospital (Brannon 1994; Allen 2000;

Daykin and Clark 2000). In institutions, caregivers who are engaged and ask lots of

questions may slow down work processes for nurses (Brannon 1994). Drawing on

Salvage (1992) Allen (2000) maintains current nursing ideology, which promotes a

“holistic approach to care based on the nurse-patient relationship” places nurses in

institutions in a dilemma (p.158). According to Allen (2000), “‘knowing the patient’ is

an important element of nurses’ occupational identity and central to their sense of

professional competence” (p. 158. See also Allen 1998). In this regard, recognizing the

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expertise of “established” or “expert” family caregivers is crucial, however doing so

threatens to undermine nurses’ professionalism (Allen 2000).

In hospitals, nurses enjoy less autonomy and less control over the work process.

For example, Daykin and Clarke (2000) show how British nurses in two hospital wards

believed their professionalism to be undermined when a new skill mix delegated some of

the care work to Health Care Assistants. Nurses saw the move as threatening. Central to

their belief was that nursing was a process that required frequent communication and

assessment and that breaking down their work into tasks – or deskilling – was not

beneficial to patients and undermined their ability to provide holistic primary nursing

practices (pp. 354-355). Assistants were seen as “task oriented” while “nurses’ ability to

offer holistic care was attributed to their enhanced theoretical knowledge, acquired

through the higher education process” (p. 354).

By contrast, as we have seen, the context and autonomy of home health care

allows nurses to enjoy and appreciate the holistic view they can accomplish (See also

Luker et al 2000), and as such, they respect the caregiver as having integral knowledge of

the care receiver. Moreover, nurses recognize the pivotal role of the family caregiver in

gaining care receiver independence. They appear not to feel threatened by caregiver

expertise; in fact they draw from it. According to Olivia, “On a day-to-day basis…we

depend on family often to provide the care.” As Mildred says, “You couldn’t do your job

without them.”

The emphasis on seeing patients as a “whole person” also appears to establish

family members as legitimate caregivers to nurses. As we saw in Chapter 3, nurses use

their assessment of how much they believe caregivers truly care as an evaluation in the

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teaching process. For nurses, willingness and caring outstripped educational credentials

in their assessments of who would make a good caregiver (See Chapter 5). This rubric of

care seems to be based on their own ethics of what giving good care entails.

Nurses are well aware that caregivers are the ones who have daily contact with

care receivers and that it is important to listen to them, not only to promote relationship

building, but also in order to understand the medical condition of the care receiver.

Nurses integrate caring, teaching and listening as important components of their

professional identity. When I asked Rhonda what it means to be a home health nurse she

replied:

To be a good educator, to be caring, to be a good listener to your patients...and a

listener to the caregiver in the family. Cause they’re the one that sees the patients,

not us. We’re seeing them one to three times a week, maybe daily... but (if

something is wrong) they would know, you know? Sometimes you gotta get off

that stool and listen to ’em even though it sounds kind of corny…If they think,

‘Well…Mom’s doing this’ and you might not think anything’s wrong. But no –

this is the first time she’s done it, there’s something wrong. So you just gotta

listen…to what they’re saying.

Nurses said they often learn a great deal from listening to caregivers and learning

from their specialized knowledge of the care recipient. One nurse said she often makes

recommendations to other families based on how caregivers implement home care

procedures into their lives. Some nurses also recognized that caregivers –particularly

ones who are caring for medically complex care receivers –may have received

specialized training, and through their implementation of such care, have become very

specialized in their knowledge. On a visit to a caregiver who was caring for a child with

complex medical issues, a home health nurse told me, “The mom is wonderful. I tell any

new nurse, ‘If you don’t know, ask Mom.’” Thus, nurses appear to listen to and draw

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knowledge from caregivers whom they deem are doing a good job in managing care.

While labor is, without doubt, predominantly transferred from paid professionals to lay

caregivers, a unilateral or top down method of teaching is not adequate to fully describe

the labor processes that unfold and reinforce each other across “public” and “private”

spheres.

Nurses encourage independence by managing caregivers’ emotions, listening and

giving them encouragement, and finding common ground – putting the labor in contexts

they can understand and not over using medical language. In these ways, nurses do not

evoke their own medical expertise or status, but view themselves as teachers who share a

common goal of helping the caregiver learn so that the care receiver can heal, feel better

or be more comfortable.

Nurses also expressed that teaching or patient education is an important part of

their professional identity as nurses. According to Cecile, “I love sitting down with

patients and teaching, I just love doing that, you know?” And Tara: “I like to teach. I’ve

thought about being a clinical instructor…for nursing students. I just can’t fit it in right

now.”

Because nurses see their roles as to “evaluate, assess, and teach”, instructing lay

caregivers how to perform skilled work does not seem to make them feel

“deprofessionalized” rather, to the contrary, they appear to gain satisfaction from seeing

caregivers learn. One nurse, when talking about what she liked about her job said, “I like

the relationships I get with all the families and especially if you get them to the point

where they don’t need you anymore – that’s always good.” According to Rhonda:

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I just love it and again…just pride when my patients are discharged (from home

care) and can be on their own –like their wound’s healed or they’re off the IV’s or

their chemo treatment’s complete, you know? I just gain pride that I was there

and one of the educators that taught them.” (Rhonda)

Nurses also expressed a unique understanding and appreciation of how much

caregivers learn and the amount of caregiving work they accomplish. According to Les,

“It’s humbling, it’s amazing what people can do in their homes.” Nurses were also

concerned about the financial aspect for families, saying they must sometimes pay out of

pocket for extra help. According to one nurse although you try your best to get them the

services they need “sometimes your hands get tied.”

That’s what’s wrong with health care. It’s governed by the insurance companies

and they tell us how high and how low and whether we jump or not, you know?

They also seemed to understand the emotional component of caregivers’ labor,

and many were empathetic about caregivers’ anxiety of not wanting to hurt the care

receiver. Several expressed their realization that the relationship of caregiver to care

receiver, as well as carrying out such labor at home, made the labor more emotionally

difficult. “I couldn’t imagine sticking my own child. I don’t know if I could do it.”

According to one nurse who has worked with families with medically complex children:

I remember the first family I ever met that did home care and I thought, ‘There is

no way I could ever do this. You know, I’m here as a nurse for eight hours, and

I’m trying to get all this done…How does this mom do this at home?’ It was very

baffling to me.

Nurses believe that it is crucial that caregivers be given the proper amount of time

to learn and were often critical of payer sources when they limited the number of visits

they were allowed to make.

I don’t think they should … – have a set amount of time. If it takes six times, then

it takes six times. If the nurse has to administer all of them – they have to.

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The Home Environment and Emotional Labor

Interestingly, the unique context of the home shapes not only physical labor (See

Chapter 7), but emotional labor as well. Working into a trusting relationship obviously

takes time, but begins with interactions in the home – an intimate and personal setting.

Home life is framed by presentational feeling rules – or feeling rules related to the social

self and also provides more opportunities for “unmanaged spaces” in which to carry out

philanthropic emotional labor (Bolton and Boyd 2003).

Nurses were very aware of following appropriate social rules. They used the

language of social interaction in describing their feelings of visiting the homes where

they were at first, strangers. They recognized their status as “guests” or “visitors” and

said they tried to be considerate of what time they came, called ahead to make sure a

certain time would work, and didn’t want to keep families waiting. One nurse describes

running late in terms of normal social rules:

Etiquette tells you, you need to call the patient that you’re gonna see next and say,

‘I’m sorry but I’m running late and I won’t be there until such and such time –is

that convenient?’

Nurses also talked about the importance of respecting cultural differences,

respecting various definitions of cleanliness, and not being judgmental of homes. Nurses

evoked rules of social etiquette in their handling of calls with long term elderly patients.

Nurses said that in these cases, they may provide a great deal of social support on their

visits, because patients are likely to be lonely and may receive very few other visitors. In

these instances, they would sometimes have to politely tell them they had more patients

to see that day. As one nurse said, “You just kind of have to be like, … ‘I’ve got to go.

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I’ve got other patients I have to see, so we’ll talk later.’ And just be nice about it.” Other

nurses said they may give nonverbal cues -“You start backing out the door.” “You just

start putting everything away and get your coat on.”

The private nature of the home structures emotional labor in complex ways. Stacy

(2011) observes how home care aides have the contradictory position of being paid

workers who are also “fictive kin”. Stacy draws on work by Hochschild (2003) in which

Hochschild categorizes such situations in which people are doing paid labor in other

people’s homes as the “marketization of private life”. The “marketization of private life”

produces fuzzy “feeling rules” as workers negotiate between the expectations of

employers and the private feeling rules of the home (Hochschild 2003). Stacy’s (2011)

home care aides, although experiencing autonomy and deep meaning in their jobs, also

experienced “losing themselves” or “overinvesting in client care” (2011:66). They

experienced emotional labor negatively when treated as “glorified maids”, or when they

performed extra work – what Stacy calls “surplus care” – “being asked to stay a little

longer for dinner, lend a little money, or take on a little more cooking and cleaning

beyond the terms of their contract” (2011:79).

As will be seen in Chapter 7, the nurses I interviewed also preformed “extra

work”, and walked a fine line in family dynamics, but they were more readily able to

draw on organizational and professional rules in setting some boundaries. Nurses have

the advantages of professional occupational feeling rules and resources, which help them

define and cope with their feelings. Many of the nurses saw the “extra work” as a rational

response to the immediate needs they observed. When they took in their own cleaning

supplies, provided small medical supplies, or called back to check on patients – they felt

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that these acts were necessary in order to keep the patient safe. Thus, nurses were able to

define this work as part of their overall ethic of caring –even though they were much

outside their job descriptions. Thus, these acts, although requiring extra mental, physical

or financial effort on their part, also appeared to enhance their caring identity.

Nurses said they sometimes face dilemmas when families who are appreciative of

their help want to offer money or tokens, which their organization may not allow them to

accept. This could be problematic, especially at holiday time. Some did accept small gifts

of nominal value, and nurses said they walked a balance between not wanting to hurt

feelings, and following organizational rules. One nurse describes a woman who was

appreciative of her work with her mother:

It was Christmas time, I was discharging her mother from… care…and she tried

to give me a Christmas card. You know…we’re allowed to take Christmas cards,

so I opened it up and there’s money in it. I said, ‘No you gotta keep this.’ I gave

the money back. She gave it back. She tucked it in my purse. You know, by the

time I left…she had given me this same money like five or six times. And on the

way out the door, they had like a little umbrella stand, and I dropped it in there.

She found it. She called my boss on me. And he said, ‘I really appreciate all that,

but if they’re gonna be that adamant, bring it back to me and I’ll deal with it after

that.’…They came to the agency and …came to some kind of agreement that

okay, let’s not give her money, you know?

Just as nurses drew on organizational rules if they did not believe they should do

something – for example accepting gifts which were too costly, providing nursing

services to other family members, allowing Medicare services if patients who were

supposed to be “homebound” were not –they also drew on organizational resources in

managing emotional labor. For example, especially in light of payer source constraints,

many nurses said they are able to refer families to social workers if there were emotional

issues, or if they needed more help in garnering resources.

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You deal with a lot of emotions and lots of times, social work has been called

with counseling or (there)…might be support groups out there depending on the

diagnosis – Cancer Society, MS society, Alzheimer’s. (Les)

I’ll get a social worker in there… or I’ll even just ask the social worker…–

sometimes they have support groups for say a patient newly diagnosed with

cancer or ms, and they have support groups for the caregivers. (Rhonda)

Nurses also were able to cope with the emotional aspects of their jobs by relying

on colleagues to discuss their emotions and to vent. Korczynski (2003) has called this

collective behavior “communities of coping” (See also McGuire, Lewis 2005, Leppänen

2008). According to the nurses:

I …talk to other colleagues, …that sharing of ‘what would you do if this?’ Or

‘I’m having this kind of problem.’ (Cecile)

Being able to talk to other people about it. You know …if I have a problem, I can

bring it to my coworkers (Mildred)

You’re traveling from home to home in cars by yourself, you’ve got to have

somebody to talk to about things…I don’t think it’s a waste or that we’re not

utilizing our time well when we are in the office at the end of the day and we’re

talking amongst ourselves and joking about stuff. You have to have that

interaction with other nurses to be able to get through all that – you do. (Vicky)

I think having people to talk to…coworkers…that you know, know where you’re

coming from…And a lot of times we get here (back to the office) and we don’t

even talk about (it), you know we talk about other things, so that gets your mind

off it. (Christine)

Although nurses were able to draw on organizational resources and colleagues in

managing emotional labor, it is apparent that more than just dilemmas due to social

norms and everyday interactions were at play. It appears that nurses did not just develop

rapport with families for the instrumental purpose of transferring the labor. The context

of home means that nurses also say they have more opportunity to give emotionally to

patients and families–in private “unmanaged spaces” (Bolton and Boyd 2003). There

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were many stories, which could be categorized as philanthropic emotional labor or “the

gift” (Bolton and Boyd 2003):

Sometimes you just need to sit down and listen to the patient and the family…

and not talk to them as, you know, me being a nurse…trying to teach you things

that you need to do, but as …somebody that will sit there and listen to them vent

some of the stuff that they’ve got going on …with their family and their

life…And yeah sometimes…you can get yourself into situations where you’re

sitting there for an extended period of time just trying to make the patient or the

family member feel better…You know, ‘We understand the stress that you’re

having to deal with’….Sometimes they just need somebody else to talk to besides

somebody in the family.

And according to another nurse:

I have found that people are generally more thankful because their emotional

needs are met, more so than the tasks…that you do for them –which I don’t seem

to understand. They don’t seem to notice that you wash your hands before

you…put your gloves on and when you take them off. They don’t notice all those

nursing things that you do so well – as much as if you’re listening.

Another nurse described:

You provide people with a kind face and kind words – people that don’t have any

family, or you know, you’re just mostly there for them. You’re providing them

with something that they need. And you can give it to them.

Nurses said that even though they self-monitor their emotional boundaries with

patients, there are times when they do become emotionally attached. Although nurses did

describe negative experiences in home care, for the most part, they said that relationships

were generally positive. Arguably, the home context allows for more personal interaction,

which has the potential for authentic relationships. For the most part, nurses attributed

closeness with families to seeing them over longer time periods (See Gutek 1995), or

because, as in any relationship in the bounds of normal social interactions, they simply

felt closer and more comfortable with some people than others. One nurse told me:

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Most places I’ve ever worked are like, ‘Don’t get emotionally involved”…you

know? You can’t help it. I am human…. It’s just like with anybody. You bond

with certain people and certain people you don’t.

Another nurse agrees:

I like to share my life a little bit with the people I come in contact with. And they

share their life with me, and it’s fun… Some people you wouldn’t tell anything to,

and then other people, you get to know 'em, sometimes they’re like family…-they

almost become family. And then other ones, you go in, you do your job and you

get out of there…as quickly as possible…It just depends upon how receiving they

are of you.

Seeing people in their own environment allows the relationships to be structured

within private space, and so emotional closeness is critically dependent on the receptivity

of the family. Several nurses who had developed close relationships said that patients

and their caregivers felt “like family”. Besides giving emotional gifts of time and

listening, a few talked of taking small treats - ice cream, vegetables from the garden, or

treats for their families’ pets. According to one nurse, “you try to keep as detached as

possible, but that’s not always easy…. there’s some patients that…tend to tug at your

heart strings more than others.” Nurses’ stories indicate that the home environment is

humanizing and tends to bring out the caring side of their professional and personal

identities. One nurse teared up when she described a situation where she had trouble

getting IV access for a little boy who needed his medicine, “He’s the same age as my

child and I kind of felt like he was my own.”

Nurses also old stories of families they remembered who had made lasting

impressions on them:

The one that I’ve been thinking about lately, actually, was a patient that… –God

love his soul –his daughter was taking care of him and he was in his

eighties…And she was so determined to keep him at home. And she did a

wonderful, wonderful job. And she so appreciated me coming in and giving her

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some respite and doing it you know three times a week and she’d do it the rest of

the time… And she’d …bake me a bag of cookies or stuff like that. She just really

appreciated me being there. And when he was dying, I didn’t have to do this, I

went over there and sat with them. You know, just because I had grown close to

them and they had grown close to me, and they felt comfortable and secure with

me there…and that was one of the best, best feelings.

Relationships with Caregivers

Although nurses talked of both positive and negative experiences in home care,

they said that in general their interactions with families are quite positive and they feel

that most families appreciate and respect them. As seen, they were very empathetic about

what caregivers go through, recognized caregivers as individuals having distinct

emotional and physical needs, established relationships and in some cases, became like

“family”. Nurses also assessed the stability and willingness of caregivers and interceded

when appropriate – for example by drawing in social workers or trying to garner other

resources (See Chapter 3).

In the U.S., however, nurses must work within the constraints of our current

system. They respect good caregivers who are instrumental in working toward the

common goal of making the care receiver well, or meeting his or her needs. They see

caring as central to quality care, and they assess caregivers based on their caring and

willingness –just as they in turn see caring as essential for good nursing practice.

However, while nurses are very empathetic, try to find extra help, may give extra time

and ask for extra visits, in the absences of robust policy initiatives to help caregivers,

sometimes their “hands get tied”.

Nurses’ professional ideals, as well as their own professional identities place the

health of the care recipient as top priority. Indeed, as we have seen, for nurses, patient

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care is the essence of the job. In speaking of the advantages of home care, although

many nurses expressed that caregivers feel more like they can ask questions at home,

most reiterated advantages for care receivers:

It seems like when my patients go in the hospital they are so depressed, and down

and out and they feel so neglected. Because the nurses aren’t able to give that one

on one care like we can in the home…and when they come home it’s like, “Ooh,

you know it brightens up their day. And you know everyone’s always

happier…the world’s better at home…It’s kind of a security issue… So I think

it’s better if you can manage a patient at home. However, there are times where

you know, it’s obviously not an option.

In discussing disadvantages of home care, nurses spoke most frequently about

patient outcomes or logistics. “The doctor’s not right there…sometimes it’s hard to paint

a picture over the phone.” Nurses talked about the fact that supplies could take some time

to get, the lack of access to certain medical equipment and coordination problems. Some

nurses expressed concern for care receivers who have poor living conditions. In speaking

about possible disadvantages of home care one nurse commented:

I don’t think that people who work in the hospital have any idea what the people

are going through at home…not one iota. And…unless they go out and can see…

what they’ve gone through, I don’t blame them for that. …But they just don’t

know what kind of conditions these people are going home in… I shrink away at

some of the living conditions and open wounds...that’s a disadvantage. I think…

that would be the big thing is the…the kind of trouble they can get into after they

go home…the knowledge base of the… the patient and the caregiver. You know

they’re not as knowledgeable in knowing what to look for if something’s going

wrong.

That nurses would frame their answers in terms of the care receiver is not

surprising, in fact, patient care – both physical and emotional is, as we have seen, at the

heart of nursing professional identity and ethics, as well as organizational and

professional ideals. This is not to say that care receiver health should not be prioritized

but that in terms of health policy, in the way we - all of us look – look at medical care,

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our eyes are fixed on health outcomes, then next we consider who will perform the

necessary work to reach those goals. In this regard, the place of caregivers has been given

very little attention in U.S. health policy.

Conclusion

As skilled nursing has been transferred to lay caregivers, nurses are increasingly

teachers rather than providers of care. But showing nurses as “ideological workers” does

not show the agency of nurses, their feelings of identity, the contradictions and dilemmas

they face in their performance of both physical and emotional labor, and the nuisances of

their relationships with caregivers and care receivers. Nurses have strong identity with

the educational piece of their labor and see it as important to care receivers and their

families to be independent in their care. While individualist cultural notions and the payer

sources they structure reinforce and influence independent ideology, nurses are often

critical of constraints that threaten to limit their ability to teach and provide additional

care. Nurses also look to the health and comfort of the care receiver in expressing their

views in favor of home health so long as the care receiver’s needs can be met. Rather

than “ideological workers” they are more appropriately, to borrow from Bolton (2001)

“jugglers” –not only of emotions and relationships but also of the structural constraints in

skilled care transfers. Interestingly, nurses prioritization of patient care is shared with

another group – a group that, in fact, demands such prioritization –the caregivers I

interviewed. Their training experiences are explored in Chapter 5.

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Chapter 5: On the Job Training

How Do They Learn?

Caregivers come into a labor process that is affected by structural, institutional

and individual factors. Health care in the United States is often criticized for being

fragmented, inefficient, and lacking continuity. Rather than a seamless continuum of

care, critics describe the various institutional actors as stand-alone “silos” that are

unconnected to each other. Third party payers – insurance companies, Medicare and

Medicaid –differ on the amounts and services they will reimburse, and this affects the

length of hospital stays as well as the services provided once patients are discharged. (See

Chapter 3 for a discussion of payer sources.) American health care is also heavily

dependent on local medical culture and resources. Thus, while it is the particular illness

or condition that is a fundamental determinant in the types of procedures caregivers

perform, different institutions have their own ways of handling patient communication

and training for patients and caregivers. Relationships among physicians, hospitals, and

home health agencies vary and are often based on past arrangements and relationships,

and the particular medical culture in the area. This was a major point made by many

home health nurses I interviewed when they spoke of the difficulties in coordinating care.

Some groups of doctors or providers were easier to work with than others. They offered

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more support and respect for home health nurses’ assessments and provided better

channels of communication.

Some caregivers receive a great deal of training in the hospital while others

receive very little. In a national telephone survey of informal caregivers, Donelan and

colleagues (2002:227) found that although 43% of caregivers surveyed were responsible

for performing bandaging and wound care, the operation of pumps or machines, or

mediation administration (in which one-sixth was non-oral), about 33% said they

received no instruction on dressing and bandaging or the use of equipment and 18% had

received no instruction on mediation administration. Not surprisingly, the training

process for caregivers in this study varied considerably. While some of this was dictated

by the particular illness or condition, I also found that differences in institutional

practices as well as actions by institutional personnel affected the training process.

The caregivers in this study had loved ones who were primarily discharged from

hospitals or rehabilitation facilities, although a few were discharged from clinics or

doctors’ offices. Many had been in multiple care settings. I was struck by the variability

in which people learned nursing techniques. For example, one woman whose husband

had cancer surgery was shown very little about how to irrigate his wound in the hospital

and was not assigned home health care. Another man whose wife had cancer surgery was

shown by medical personnel how to take care of the wound, assigned home health care,

and was even given the doctor’s cell phone number in case he had questions! Thus, the

particular experience prior to discharge and the communication processes with medical

providers greatly shape the caregivers’ reaction to the performance of the labor and his or

her feelings of competency right off the bat.

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Those who Received Prolonged Training in Rehabilitation Facilities and Hospitals

Several caregivers received prolonged training in rehabilitation facilities or

hospitals. Generally, in these cases, care recipients had suffered critical injuries such as

spinal cord or brain injuries and were admitted for long periods of time, generally at least

two to three months. In most instances, at least two caregivers were required to learn the

procedures. The home health nurses I interviewed corroborated that caregivers who have

been in long-term critical care situations often receive excellent training. One nurse told

of a mother and son who had brought her husband home from the hospital. Although she

had to train them on an IV he needed, “they came home pretty much knowing his trach

care and his ventilator (care).”

Care recipients were in rehabs in five different states in the Midwest, Eastern, and

Southern regions of the U.S, and although caregivers’ stories varied with respect to their

own perceptions and experiences, most all noted how the training they received increased

their feelings of competency. This appeared to be due not only to the quality and extent

of the training, but also to the gradual nature in which it was introduced. According to

Faye:

When you first get there, they kinda do, they do everything. And then as you

know…when his health became…pretty much stable, they would gradually

introduce me to learn how to suction him, learn how to use a cough assist

machine… They have like overhead lifts. You know, they just, they would do it

and they’d say ‘here, try this’ And they’d always be there with me…you know, to

make sure I knew how to do everything. And it just was from everything –from

giving him a bath to washing his hair, to you know, taking care of his

tracheostomy. They just taught me how to do everything...So it started with them

doing it and then as I felt better, you know, and a little bit more relaxed, that’s

when, they pretty much encourage you to do all hands on so that you know how

to do everything when you get home…So there was always somebody there to

assist, you know, and I could do as little as I wanted or as much as I wanted. But

by the time I left there, I knew how to do everything.

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Caregivers seemed particularly encouraged by this type of training and some noted that

their experience in rehabs taught them how to perform vigilant monitoring as well as the

specific medical procedures. Connor relates:

They taught us over there not just to do the physical cathing of someone or

helping them in the shower…but to look at the overall perspective. ‘Are you sure

you took some of this medicine?’…Be very observant because things can happen

very quickly…you look at the whole system…you look for bedsores...

Everyday. Don’t let it go a day.

A significant feature of training for these caregivers involved spending the night

alone with the care recipient and performing all procedures before discharge. This

seemed to resonate with caregivers and they believed this to be a powerful evaluation tool

of their ability to perform the job. Faye and Simon – whose loved ones were in two

different rehab facilities talk about how this experience helped them. Faye describes the

program she was in, while Simon says that even though he and his wife performed the

actual work, they knew hospital staff members were only minutes away if they needed

them:

Faye: They even had a program … that you would have to spend the night alone

in the hospital room with your child and unless there was an –and it was for like

24 or 36 hours, I mean not like you’re locked in there or anything –but unless

there was an emergency, there was no nurse that would come in and help you…no

assistant, no anything. …But they would come in and they would check, just to

make sure that you know, he’s okay… But they forced you to take care of

everything. You know, so, it was like a test run.

Simon: They told us from the git-go…if you’re not comfortable, you can push this

button and we’ll come in and help you. But we’re not gonna let you take him

home until you’re ready to take care of him.

It is important to note that although these caregivers believed they had received

good, or even excellent training, many still said they were scared or anxious when they

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arrived home and had to perform the procedures for the first time completely on their

own. The home experience varied for these caregivers. For many, home health nurses

came more or less to perform vitals and check on them, while others still had to learn and

interact more directly with home care as they learned to manipulate new pumps or

equipment. Interestingly, due to extensive training and knowledge, some caregivers felt

that they received specialized training above what some medical personnel had (See

Chapter 8 for a discussion of “expert” caregivers). For example, I spoke with two

different caregivers who had learned to change trachs, yet they told me that private duty

nurses (LPN’s) later assigned to them through Medicaid waivers, were not trained to do

so. One caregiver told me about suctioning her daughter’s trach while in a medical

ambulance because the emergency medical technicians (EMT’s) were not trained in how

to do this. These types of dynamics make some caregivers less likely to rely on the

medical services on which most people depend.

Those Who Received Training in Hospitals

Training experiences of other caregivers in the study –those who did not have

prolonged training in rehab facilities or hospitals –varied significantly. Some learned a

great deal before discharge, others, very little. Of the caregivers who received training,

some were actually allowed to perform procedures for their loved ones while still in the

hospital. Paul learned to attend to his wife’s wound drains while the nurse watched and

instructed him, giving him the opportunity to perform the work himself. Beverly, who

learned to give IV antibiotics in a large pediatric hospital tells of her experience:

They made me watch them for the first two, maybe three days. Then, you know,

they would slowly have me work into it. And of course, you know, you had to

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wash your hands real good first. And…they taught you how…when you open

your alcohol things you never let it touch anything. I mean…they were very

articulate…in their training. And… it was better for me to watch and observe and

see how it was supposed to be done, than just be thrown into it and say ‘Here –

you do it. This is how you do it.’

Beverly’s account again demonstrates how caregivers believe that gradual

learning, and a period of watching and then doing, benefits them. Despite her training,

however, Beverly said she was still quite anxious when she had to perform the

procedures at home by herself for the first time. She also believed that although the

nurses in the hospital were patient with her for the most part, her training procedures

were interrupted when personnel were in a hurry. Beverly recalls a negative experience

with one hospital nurse:

She really didn’t want to give me the chance to do it. She wanted to do it, get it

done, get out of there…She wasn’t patient and she just wanted to do it herself and

be done with it, and move on to the next patient. But…the others, they were great.

This experience shows how, even in an institution that has training procedures in

place, individual actors may still affect the training process. Several of the home health

nurses I interviewed stated that their prior experiences in hospitals taught them that

personnel often face significant time pressure and may not always have enough time to

teach. Whatever the reason for the nurses’ behavior, this example demonstrates how

individual actors affect training processes as they carry out their work and/or in their

responses to institutional time pressures.

Some caregivers –particularly those who were in pediatric hospitals such as

Beverly –were also allowed to practice on demonstration models before discharge.

Caregivers described these models variously as “dolls”, “baby dolls” or “fake skin”.

Generally, in these situations, hospital nurses supervised training and used a check-off

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sheet to indicate whether the procedures had been learned. Several nurses I interviewed

reiterated that pediatric hospitals generally do a very good job of teaching because, as one

nurse said, they realize the child may have an illness that lasts over an extended period of

time. Said one nurse: “Our children’s hospitals around here… do an excellent job. I’ve

had children with trachs come home for the first time and they’ve just been taught so

well… –they know more than I do.”

Some caregivers were also allowed to practice with the types of pumps they

would be receiving at home, and they saw the process as quite helpful. Says Nancy:

They did a pretty good job getting you ready. I mean they make sure you

demonstrate your ability… you know, they make you go though the whole

process. You know, setting up the IV, and getting the line ready.

Indeed, other caregivers, who were not trained in this manner, explained how

getting used to new equipment or pumps at home was stressful for them. Although

caregivers believed that this kind of practice helped their initial confidence levels, many

still had anxiety about doing the procedures. One caregiver told me “doing a procedure

on a doll is not the same as doing it to your own kid”. Nancy, as well as three other

caregivers in this study, also reported receiving written protocols, which gave them

detailed instructions as to how to perform the procedures at home. They believed this

helped with the actual execution of the labor. According to Nancy:

They … give you a very detailed book of instructions, in case, you know, you’re

tired, you can’t remember, your mind goes blank or whatever, it had step by step

what you need to do.

Those Who Received Little or No Training While in Hospitals

Caregivers’ experiences, however, varied significantly. Although written

protocols benefited some caregivers, most reported they did not receive them. Several

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caregivers reported that they were simply shown the procedures or talked through them

by hospital nurses. For example, one caregiver, who was learning to put formula in a

feeding tube said, it was a “dry run” in the hospital – they pretended to pour the formula

in the feeding tube. Moreover, although several of the caregivers who dealt with large

pediatric hospitals were allowed time to practice on models, if not on the real person, this

was not always the case. Meredith, for example, is a caregiver whose child requires total

parenteral nutrition (tpn) – a highly sterile technique that involves dispensing vital

nutrition from a pump into a central line catheter. At the time of diagnosis, Meredith and

her family lived in a large metropolitan area in the western U.S. Although hospital

personnel showed Meredith and her husband how to perform some procedures such as

changing the cap and dressing for his central line, they did not instruct them how to

operate the pump. Meredith describes her feelings in the hospital and after discharge:

In the hospital, when you’re a newbie, they don’t teach you their pumps. They

want the nurses to handle everything, take care of everything. The pumps that

they use in the hospital versus what they use for home care are two different sets

of pumps. So when you’re in the hospital, you’re just watching and observing and

learning all the lingo (laughs) you know, and what’s happening, but you don’t

learn any of that. This is how we learned, and this kinda scares me…The day he

was discharged a nurse came to the house…and showed us how to spike the bag

and “du da du” and all that, and run the pump and that was it. So we’re …you

know there’s no –there’s paperwork on the pumps and how to run ’em and all –

but you –we’re taking notes. I’m like, “Oh my God!” It’s so scary, cause

everything has to be so clean and sterile, and this and that, and you’re stressed out

and (thinking) ‘what am I doing wrong?’ All these tubes and blah, blah, blah….

This example shows how stressful it is for caregivers who are shown very little in

the hospital and then must perform complex procedures at home. Several caregivers, who

received little or no training in the hospital and were expected to perform intense care

immediately upon discharge, expressed extreme anxiety and feelings of being

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overwhelmed. Ava, who had to learn to irrigate her husband’s wound, said the hospital

nurse showed her the procedure only one time. According to Ava, the nurse drew up

some saline in a syringe and shot it into a sink in the room but she “really didn’t invite

me up there to see.” She describes her hospital experience, and the discharge, which in

her opinion was premature:

He was not well enough to come home. But they did send him home. And they

sent him home with no home health. And I thought, ‘This can’t be.’ You know,

because they’re just showing me over a sink, a little sink, and I’m standing far

behind…She just called me over there and she said, ‘You want to see how you do

this? You just put this in here. Put …the water in it. Put this in here, press it and

that’s all you do.’ I knew nothing after that. And I watched her and that was

that…I didn’t know what she had done.

In Ava’s case, she felt the nurse who showed her the irrigation procedure was not

as caring as the other staff nurses. “Now if we would have had some of the other nurses

that we had during that time”, said Ava, “they would have put me front and center and

said, ‘this is what you do. Grab it!’” Again, hospital training processes appear to vary not

only by institutional practices, but also by the particular nurses who are on a given shift

and the amount of time they dedicate to teaching.

Morgan, whose husband had ALS, also believed she did not receive proper

instruction. She was required to learn several skilled procedures during the course of his

illness, including the maintenance of a catheter and a feeding tube. She dealt with various

providers including hospitals, nursing agencies and equipment delivery companies and

felt that she was never given good instruction on how to perform the work:

Well what I heard several times in this process, or what I think I heard was, well

you know yeah it’s professional people that do this every where else, but since

you’re the caregiver, you’ve all of a sudden been knighted to be able to do this –

just because you have the title of caregiver. ‘Are you the primary care giver?’

‘Yes.’ ‘Well then, you’ll just do this.’ So, and I mean…I got that all the time. It’s

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like is that a degree? You know, I didn’t go to school for this. So it, it was just

almost an unspoken – it’s somebody else’s problem. It’s not ours.

As seen, experiences within institutions - hospitals and rehabs –greatly shape

caregivers’ reactions to the labor process. Those who have negative experiences or do not

believe that they have received proper training undergo additional stress and may feel

less qualified to perform the labor, at least initially. One home health nurse described

hospital experiences as “the domino effect”, saying, “if they had a bad experience in the

hospital, then we get ’em –it just continues.” Those who are better trained and are given

more time to practice, feel better. This does not mean, however, these caregivers do not

experience anxiety in performing and executing the labor when they return home. In the

next section I discuss some of these experiences and also draw on nurse interviews in

explaining some of the training that takes place at home.

Homecoming

Whether or not caregivers received training in the hospital or rehab, most said

they were still very anxious when they arrived home and had to perform procedures

themselves. Many described feelings of being overwhelmed, nervous, and scared.

Isabelle describes her feelings when she came home with her son from the hospital after

his brain injury:

And so …the nursing supervisor came with me in the squad. And we got home,

got in here. She got things set up, you know…She had coordinated getting all the

medical supplies here… so basically setting everything up –and then she left. And

then my husband had to go pick up prescriptions, and I remember just sitting on

the couch just like, ‘I don’t know what to do’. You know? ‘I don’t know where to

go, what to do. I’m afraid.’ Well, you know, ‘do I leave the room?’ So, it –in the

beginning –it was really scary cause you’re just, you’re sort of lost.

Faye who learned to care for her son in a large rehab facility had similar feelings:

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It was very overwhelming. It was the first time I’d ever been by myself. I mean,

literally, where I couldn’t push a button for a nurse to come and help me if I got

scared… but you know, you just do what you have to do... You just…you know

you stay focused. You remember if you have literature they send home, literature

with you so that you can read if you question anything. And you just make sure

that you get into the same routine every day. You know… I mean like clockwork.

Importantly, not only were caregivers dealing with the medical procedures, but

also their feelings about how the care recipient’s health was in general, whether they

would be able to adapt to new regimens, or what their prognosis might be. Besides the

realization that the medical labor must now begin at home, caregivers also had to ensure

that the house was in order. They had to set up, and get in food, supplies and

prescriptions. Ava, who was given only minimal instruction about her husband’s wound,

and was not assigned home health care, describes her first day home from the hospital:

(My husband’s friend) came over and…I left. And I screamed all the way to…the

pharmacy to get the prescriptions, and to get the food. And it was just really hard,

but I got myself calmed down. I know my … daughter called me on the way and I

was sobbing so hard. You know, she couldn’t understand me, and she said, ‘Pull

over! You know just pull over –you cannot drive like this!’ And I said, ‘No I’m at

the end of it now.’

Obviously the anxiety of this situation was intense for this caregiver. An

important point made by many of the caregivers, particularly ones who did not have

prolonged training before arriving home, was that they were afraid they would hurt their

loved ones. Elizabeth, who gave IV antibiotics and was shown some of the procedures in

the hospital, describes her feelings:

I just remember being extremely overwhelmed. You know you’ve got all these –

we have this big dining room table –you got all these supplies sitting out there

and you’re thinking to yourself, ‘I will never, you know, I’m gonna kill my kid. I

am never gonna be able to do this, you know, not break sterile technique and …

I’m gonna get these drugs confused…I’m, …you know, air’s gonna end up in the

line.’ You know, a million things.

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Indeed, the sheer volume of medical supplies in a home setting was startling to some of

the caregivers. Says Bridget, who learned to give IVs to her husband, and was only

shown the procedure once prior to discharge:

They, well they… brought aaall this stuff in –in the beginning. I mean you never

saw the like of stuff! Bags upon bags of stuff! And I’m thinking, ‘Holy cow!

…You know –(is it) gonna take all this?’ Well it took much more than that let me

tell you –it did. I mean those bags are empty within a week of course…most of

them.

The nurses I interviewed confirmed that there is a wide variability in the training

that takes place in hospitals and other institutions. Due to vast differences in experiences

and expectations, caregivers and care recipients have different levels of knowledge about

their condition or the procedures to be performed. Nurses were quick to say that some

hospitals or programs do provide very good training before discharge. One nurse

currently works as an educator for a doctor’s clinic. She said that caregivers learn over a

period of days how to do procedures such as administering shots, and they do not release

the patient until the caregiver has demonstrated that she or he can perform the

procedures. A discharge planner I spoke with said that the hospital where she works has

made it a priority to not leave everything to home health, and they provide hands on

training such as suctioning trachs and taking care of colostomies before patients are

discharged. According to another nurse, who has experience working in a pediatric

hospital as well as home health, family feedback is taken seriously in the hospital where

she works, and is used to improve teaching. The hospital uses parent feedback to make

recommendations that will be helpful at home – such as performing the procedures in a

certain place, or doing them at the same time each day so that the child knows what to

expect. Parents are allowed to practice procedures over time on dolls and then eventually

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administer them to their children. They get to use the pumps they will use at home, and

also take part in a transitional care program, where they perform the procedures for a

period of 24 to 48 hours before discharge.

However, while some hospitals do provide very good or even excellent training

programs, a very common scenario nurses encounter when assessing skilled admissions

for home care is that many caregivers receive very little training before discharge.

Complicating the picture, nurses state that sometimes information received from referral

sources is very basic, including for example, a list of mediations or demographic

information. Says Josephine, “If we could have more information, up front at least, you

know – half an H and P (history and physical) that would help some.”

Some of the caregivers in this study who felt they had learned substantially in

rehabs or hospitals said they relied less on home health nurses to teach them. In these

situations they said home health nurses came more or less to check on them and to make

sure they knew what they were doing. In fact, some of the caregivers who had spent

significant time in rehabs and took care of care recipients with specialized conditions

such as spinal cord injury felt they had more knowledge of how to treat the care recipient

than did some local home health nurses. Some of these caregivers believed home health

nurses (and emergency medical personnel) did not possess the education and training

necessary to deal with their issues. Said one caregiver, “I was their teacher, actually.”

One caregiver learned how to take care of her son, who was quadriplegic, had a

tracheostomy, and was on a ventilator, in a rehab facility in a larger city away from her

home state. She said that once they arrived home, home health nurses came for about

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three weeks, “so we could get some kind of familiarity with them”. However she didn’t

believe she learned much from them:

Yeah, it’s surprising even with nurses that you think have done this a lot of times.

You know, that they’ve been around these kinds of things a lot. They don’t –I

mean –I am more like the doctor telling them what to do…And you know, even

the doctors here, you know, you pretty much tell the doctors…what you think

needs to be done. Just because when you go to a bigger city, they deal with it all

the time…so the interactions with the (home care) nurses were always good,

but…I always felt like I’m the teacher, you know, and they’re learning from me.

And they always, you know, always were very helpful.

Some of the caregivers who had received extensive training in the hospital or

rehab, however, still had additional learning to do at home and relied heavily on home

health nurses. For example, one couple whose son had sustained a spinal cord injury,

learned most everything in rehab, but still had to learn a new pump system for his IVs

from a home health nurse. The pump at home was different than the one they had used in

the hospital and had to be timed differently. Moreover, the company also sent a wrong

piece of equipment and the home health nurse helped to accommodate them, show them

the differences in the pumps, and get the right equipment.

Another couple whose infant son had a brain injury was shown how to suction his

trach and do tube feedings during their one-month hospital stay, but still relied heavily on

home health to educate them on trach care and other procedures once they arrived home.

Over time they learned to change the trach and feeding tube. Home health nurses used a

doll to help teach the trach care and through oral feedback gradually allowed them to take

over the procedure. They believed this was necessary, as the mother stated, “Of course

when you get home you’re like uhhhhhh (laughs) I don’t remember anything they told

me.” Initially the couple’s insurance paid only for a night nurse to come while the couple

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slept, but with another young child in the house, and more procedures to learn, the mother

spoke up to the insurance company:

‘I’ve got …a medically fragile child and a young child and my husband works

during the day and I’m trying to learn how to do this. I need day nursing.’ So

eventually (we) got day nursing. …About three months later, we were approved

for the Medicaid waiver and at that point the nursing services switched over to

that.

Annette also experienced a gradual learning process. She learned to change wet to

dry dressings on a deep abdominal wound for her mother from home health nurses. She

was allowed to watch the procedure being performed several times before she actually

did it herself:

I watched her. I watched her like probably, I don’t know, maybe ten times. And

then she says, ‘Do you think you can do this?’ … Cause I watched and then she

would tell me what she was doing –as she was doing it. And …afterwards I wrote

stuff down. And then the next time that she would be…going through it again,

and saying… ‘Do you have any questions?’ And I’d either ask a question, or if I

forgot a step, I’d write it down; so that when I took over, and when I was doing it,

I made sure I wasn’t leaving anything out.

The gradual learning process, and the chance to ask questions over multiple days,

helped Annette to feel more confident that she “wasn’t leaving anything out.” The fact

that payer sources allowed nurses to come on multiple days no doubt played a part in

Annette’s ability to learn the procedures over time. However, at one point, Annette said

the home health nurse had to fight for the ability to keep coming out. The nurse told her:

They’re pushing for me to release her…I’m not going to…It’s up to me because

I’m the head nurse, and I’m not going to.

Annette’s praise of the nurse was indicative of their good working relationship

and reveals how the nurse was an advocate for the family. It also shows how in the face

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of cost containment, such advocacy is often necessary in order to ensure continuity of

care, and the kind of gradual learning that Annette had.

While some caregivers learned procedures over time, several were expected to

learn within a much shorter time frame. Elizabeth was shown how to do IVS one time in

the hospital. She said the nurse explained to her how to “make sure I didn’t break sterile

technique.” She also explained to her how to draw up the saline and heparin, and she was

actually able to perform this work while in the hospital. When she arrived home she said

she “was sure” she “did not have total recall” of the things she had learned. A home

health nurse met her at home and watched as Elizabeth did the IVs the first time. Though

Elizabeth said she felt “extremely overwhelmed”, she was able to do the procedure with

the nurse watching her and said she greatly appreciated the tips the home health nurse

gave her. For example, “She recommended that we put together bags that had all the

supplies in it that you needed for an infusion.” Elizabeth said one of the things that really

helped was that the equipment and supplies at home were “exactly the same” as what she

had been shown in the hospital.

Another caregiver was shown IVs once before discharge but wasn’t allowed to

practice. As she states “they went through it with me one time and of course I still

couldn’t…I didn’t get it.” In this case, upon discharge, her husband, the care recipient,

was to receive four doses of medication a day –at 6 am, 12 noon, 6 pm and 12 midnight.

When the home health nurse arrived, it was already time for the 6 pm dose, so the nurse

actually did the procedure while explaining it to her. Thus, the nurse did not really

observe the caregiver performing the work:

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The home health nurse came after we got home and …we got everything set

up…and my son was here and he…watched as she went through this with me.

And …I knew that if I couldn’t do it, I could call him, too. But anyway, we went

through it and I thought, ‘Yeah, I can do it.’ So …she did it at 6 o’clock and then

come 12 o’clock at night, I had to do it. And I was, I was just, I was nervous!

And… so –but I got it done. …I was so proud of myself. (Laughs.) You know, I

could have sat down and cried! But anyway…then 6 o’clock the next morning

came and…everything went fine, you know. But then there would be one little

something that I would forget to do. And I’d think about it later, and that’s when I

got afraid. And I thought, ‘I’m gonna kill him before this is over’.

Obviously, the amount of prior training affects caregiver confidence. Based on

interviews with nurses, because of varied hospital experiences, some caregivers may be

shown surprisingly little about the skills they are to perform. Speaking from their prior

experiences working in hospitals and other institutions, nurses believe that part of the

reason patients and caregivers often come home unprepared is that there is little time to

teach in the hospital. According to one nurse, teaching is “glossed over so

quickly…because nurses don’t have time to teach in a hospital.” Or another, “they have

so many things they have to get done in their eight hours,” As one nurse said about

discharge, “things are hustle, bustle, get ’em out.” Most nurses acknowledged that

hospital discharge planners (who are usually R.N.s or social workers) are in a tough

position because they are “stretched” and often “rushed” According to one nurse:

I think…discharge planning should start the day the patient goes into the hospital,

not the day the patient’s getting ready to leave. You know, but we haven’t quite

advanced to that because everybody’s stretched in the hospital, too…They keep

making cutbacks and …there are discharge planners who are responsible for so

many floors, you know? And they can’t possibly see everybody…I wouldn’t want

to be a discharge planner in a hospital, cause…–I’d be there 24/7... –you can’t.

Nurses state that hospitals are responsible for making sure there is a “willing and

able caregiver” who agrees to do the work in cases where it is not reasonable to expect

the care recipient to initially care for him or herself. But nurses were often skeptical that

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all caregivers were really “willing and able” or that they truly knew the extent of what

they would be expected to do. A few nurses said that if hospitals know home health has

been assigned, patients and caregivers are simply told, “Home health will help you with

that.” In speaking in general of hospitals’ assessments that there is a “willing and able

caregiver” one nurse commented:

There always is –that always amazes me. And a lot of times there is somebody.

And if there’s not, then, you try really hard to find somebody. I mean we had a

lady that we went out twice a day and did… –she had two different IVs –…and I

mean, she couldn’t do it herself…It was just her and her son. Her family…was

way up north…Her son was in grade school…I mean he was willing but we

weren’t so sure…But you try to find people and do what you can.

Obviously situations such as these are concerning to nurses who must scramble to

try and find a willing adult to take over the care, once the care recipient is home. Several

nurses said that neighbors would sometimes fill the role. Once nurse talked of a man who

lived alone, and his neighbor came four times a day to give him insulin injections and

monitor his diabetes.

Nurses also stated that in many instances caregivers are under the impression that

home health nurses will actually come in and do all of the skilled care. According to one

nurse:

Most of the time they’re scared…they don’t want to do it. They’re always under

the impression coming from the hospital or nursing home that the nurse is going

to come every day and do it for them. That’s what they’re told. But it’s not

(true)…cause Medicare has been changing their guidelines and they don’t want to

pay the nurse to go every day. They want the nurse to teach and they don’t care

who they teach. If it’s a next-door neighbor, they just want them to be taught…

And another:

It’s hard for the families to think they’re coming home and the nurse is going to

come and take care of daddy and you have to tell ’em, ‘You only get two and a

half visits.’

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Nurses acknowledged that caregivers in these situations are “put in a very tough

spot…they don’t know really what they signed up for.” Situations such as these have

caused some of the nurse administrators and those who work in home health in-take

(receiving calls from referral sources) to work more closely with discharge planners and

ask for reassurance that families are informed about what they are expected to do.

Because of varied experiences, one of the first things that nurses say they do in

making initial contact with caregivers and care recipients is finding out what their

expectations are, and managing them. Many nurses said they are very direct in the initial

visit. According to Rachel:

The home health nurses that I’ve dealt with, that I’ve trained, or I’ve worked with

–or myself –we do a real good job of somehow when we come in for the very first

time…(we) say ‘What do you expect from us? What do you think home health’s

going to do for you? Because what you’re saying to me sounds like you’re asking

me for 24 hour care.’ So we’re good about, at that initial visit, somehow

verbalizing, ‘tell me what you want.’

Nurses say they also must find out exactly what caregivers know up front. According to

Jamie:

I always start out asking them what they know, already… ‘Have you ever seen

this before? You ever heard of this? Do you understand the diagnosis and why

this caused that?’ You know, find out what knowledge they already have first, and

then just build it up from there. Some, you have to start from the basics, and

others, you know, they’ve already done it before or seen it before. So it just

depends…depends on the person.

In order to begin to teach the skills, nurses say a key feature of their job is

building rapport, or as Dana said, gaining trust. According to Belinda, “I always try to

develop a trusting relationship with them because...for me to teach them, they have to

trust me.” Vicky says she tries to develop a rapport before she attempts to teach anything:

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People are just more open to you in their environment –it’s easier to develop a

rapport... I guess that’s what I always try to do first –talk a little bit to people,

kind of get things started. I think…they have to connect … (to) a certain extent.

You can go in and do treatments, but if you’re trying to teach people things…just

‘Bla, bla, bla, bla,’ telling ’em all the right things –doesn’t mean that that’s gonna

help ’em to do that.

As Devin says, “I don’t go in there (and say), “I’m your nurse and this is what we’re

gonna do…I want to get it on a friendly level so they feel comfortable asking me

questions.” Several nurses expressed that this is especially important because the home is

“their environment”, “their territory” and “we’re the guests”.

Nurses say they must establish common ground with caregivers. They recognize

that caregivers may be unfamiliar with medical language, and they say they are careful to

“not talk over their heads” or to “bring it down to their level”. Said Dana:

I don’t want to go in and, because I got a degree in nursing, sit there and talk all

this medical stuff, and they’re looking at ya, and you know…their head’s

sideways and they say ‘Uh huh.’ And you turn around and walk out and they

don’t have a clue what you tried to explain to ’em.

In attempting to speak a common language, Karen explains:

I’ll call it an IV tubing, but then when they look at me and they call it a

hose…from now on, we call it a hose. And I’ll say, ‘The IV tubing, or a hose as

you call it.’

Several nurses also say they try to put the labor in a familiar context or a “context

they can understand.” Part of this involves getting to know the caregiver and trying to

understand how they relate. One nurse gave the example of teaching an elderly woman

who had baked all her life that giving an IV has some similarities to the baking process:

‘Here’s the supplies that we need to do the infusion’ as compared to ‘here’s the

supplies we need to bake a cake.’ You know, ‘There are steps that you go

through to get the end result of taking the cake out of the oven…Once you’ve got

your list…start following your directions, just like baking a cake…You have to

get all your equipment out, you gotta get your bowls and your mixers…Now you

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need your ingredients…’ sometimes you have to break it down to what people –

how they can understand.

Nurses say they also emphasize the common goal of both caregivers and nurses –

to help the care recipient maintain health, heal, or gain more independence. By talking

about this objective, some nurses believe that caregivers can better picture the end result

and realize why their work is important. Regarding a foot wound, Chloe gave this

example, “Wouldn’t you like to see them up and walking around again? …We gotta get

this foot better.” Along these lines, Belinda said, “I always tell them why we do

something in a certain way because I think that makes it clearer in their head, “Oh yeah, I

have to do that because of that.” In this way, nurses let caregivers know how their labor

affects the outcome for the care recipient.

As part of emphasizing a common goal, Dana says, “You don’t want them to feel

like you’re up here and they’re down here…we’re all on the same field at the same level,

trying to do the same goal.” Nurses were quick to say that a person’s ability to learn was

not based on their socioeconomic status. According to Jamie it is not years of formal

schooling but the “ability to understand.” “I can take somebody with a Ph.D. that can’t

grasp what I’m trying to tell her, but somebody that didn’t graduate high school can.” Les

says, “You would be amazed, the education level may be 8th

grade, but we’ve taught ’em

to connect IVs, give antibiotics … disconnect the antibiotic, flush the tube.” And Dana

says willingness is more important than education, and that in all cases, the goal is to

teach independence: “You could have a chemical engineer and a coal miner –the goal is

the same.”

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As noted, some of the caregivers in this study had written protocols from the

hospital that gave step-by step instructions on the procedures they were to perform at

home. Caregivers appreciated this type of instruction and felt it helped them do a better

job of actually performing the medical labor. Rather than a strict protocol, however, it

was far more likely that caregivers were given more general written literature about the

illness or condition or manuals on the pumps or equipment, and the like. While some

caregivers referred to this literature, others found it confusing or said they had so much to

do, they didn’t have time to sit down and read it.

From listening to caregivers and nurses, there is a great deal of variability in how

home health nurses convey information. While some of this may be due to agency

policies or norms, from listening to nurses’ stories it is evident that they have different

teaching philosophies and styles and are often given much leeway as to how they transmit

information. Six nurses say they write everything down in a step-by-step protocol for the

caregiver. (For example: Step 1, Wash Your Hands. Step 2, and so on). When I asked

one of the nurses if she is mandated by her agency to do this, she responded. “Not

mandated to. It’s just something that I like to do. Just so that they can refer to it, feel

more secure themselves.” Two nurses say it depends on the situation as to whether they

write down instructions. For example, one nurse said she has found that some caregivers

like to write things down themselves, however if there are limited visits and multiple

procedures, she will write down instructions for them. Three nurses said that step-by-step

instructions for common procedures are written by their agencies and one of these nurses

said her agency elicits caregiver feedback as to whether the instructions are helpful.

Three nurses don’t write down instructions but make caregivers repeat the steps back to

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them before they are allowed to do them. One nurse copies instructions from a home

health manual. Several nurses say they give pamphlets or handouts that relate to the

specific disease process or medical condition, or instructions that come with equipment

or pumps. Nurses also report drawing pictures and diagrams, sometimes as a supplement

to written procedures, and commonly as a guide for those who cannot read or have

trouble reading the English language. In general, nurses have observed that sometimes

caregivers take their own notes, and sometimes they do not.

Seven caregivers in this study said that they took notes or wrote down instructions

on the correct way to do the procedures. This appeared to be a personal choice in most

cases as one caregiver said, “I’m a writer downer.” Some of the difference in methods,

however, was due to the teaching strategies employed by home health nurses. For

example, in one case, a caregiver was not given written protocol on IVs prior to arriving

home, but the home health nurse wrote down step-by-step instructions for her. The

caregiver believed these instructions were extremely helpful and said she referred to them

on multiple occasions.

Despite wide variability in teaching methods, all nurses state that the general

teaching process is to first demonstrate to the caregiver and/or care recipient exactly what

they are to do, allow them to watch and ask questions, and then observe a return

demonstration. (From talking with caregivers, generally this method was employed). In a

return demonstration, the caregiver or care recipient must show the nurse that they can

perform all the procedures on their own. Each nurse, however, has his or her own

teaching strategies they use to accomplish this process. Josephine tells how she teaches

wound care:

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You do it. Kind of walk ’em step by step. ‘Wash your hands, then you put this

cream on, then you wrap it this way.’ And …they watch you and they ask you

questions along the way. And then, maybe the next day you come back and you

help them...You walk ’em through the steps as they do it. And that usually works

better… Then …you let them do it the next time on their own.

Many of the nurses say that because they know caregivers can be overwhelmed they

prefer to teach a “little bit at a time”. According to Ruth:

I try to…limit the amount of information I give them all at one time…Because it’s

just, you know, who can comprehend all that? You know? You’re overwhelmed

with just bringing your loved one home and your responsibility of needing to …

just prepare meals and go to the grocery and help with their medication and all

that sort of thing.

Nurses describe demonstrating as “walking through” the steps and say that they “talk

through” the procedures as they are doing them. According to Olivia, “they’re walked

through it little by little.” Dana likes to “start with the basics, and then go on.” For the

caregiver who has a lot of anxiety:

You… would try to make everything as calm as possible. You’d say…‘We’re not

gonna rush into all this stuff. First thing you have to do is just relax and we’ll go

through this step by step.’

When it is time to observe caregivers or care recipients perform a return

demonstration, nurses say they must be vigilant to ensure they are performing the

procedures correctly. As Belinda says regarding an IV, “You just try to watch ’em really

close when they’re doing it to make sure. I’ll say, ‘Now make sure you don’t touch here

or here, because this needs to be sterile.’” Another nurse says she makes the caregiver or

care recipient repeat what the next step is before she allows them to perform it: “I make

them state it to me before they go through it…cause I don’t want them to just jump in and

do it and make a big disaster out of it.” Rachel says if it’s an IV she does the procedure

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the first time, then comes back and has the caregiver watch her again, as the caregiver

tells her what to do next.

One of the strategies nurses say they use, especially if someone is hesitant or has

anxiety, is to give lots of praise, positive reinforcement and encouragement. As Les said,

“You have to encourage them. You have to empower them.” Nurses say they have

communicated, “You did a fine job doing that,” “Give yourself a pat on the back,”

“You’re doing a good job –boy this sure looks better.” “You can do this. I know you can

do this and you will do this. We will do this and then you will do this.” One nurse said she

sometimes gives hugs. Nurses also said they tried to correct in a positive way, as one

nurse said you have to “focus on the things they’re struggling with without making them

feel incompetent.” Some nurses say they also have reassured caregivers they would not

hurt their loved ones. Dana said to a woman who was going to learn how to give an IV,

and was “in a state of panic” on the phone, “Anything that I’m going to bring with me

will not harm the patient because I won’t let it happen.”

While nurses generally prefer to teach slowly, they are sometimes constrained by

how many visits payer sources allow. In general, nurses are very conscientious of how

many visits they have and try to do the teaching in the first few visits when caregivers or

care recipients need more help and instruction and care recipients may be especially

vulnerable to hospital readmission. Some of the nurses called this “front loading visits”.

Sometimes, though it is hard to work what they think the patient needs with the

authorizations allowed. If more visits cannot be negotiated, sometimes nurses are forced

to change the way they teach, for example they may have caregivers do more work

sooner than they would prefer. One nurse says it’s frustrating when insurance is “not

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gonna pay for the nurse to come.” As she said, “Maybe we’re just getting two visits to go

out and teach somebody and that’s it. So you know then… you’re forcing them to have to

learn.” One nurse was upset because she was only allowed six visits total -about one visit

per week for a six-week therapy –on a patient who needed IV care, education, and blood

draws. In explaining her frustration with the limitations she said:

It depends on what your … insurance is… I mean I have a patient…and I can only

see him one day a week. And in that one time, we have to do education, we’ve got

to do therapy, you know, plus draw labs. I’ve got to do antibiotic administration.

He has a PICC line…I had to teach him how to do his own antibiotic twice a day.

I mean it’s just a lot and for being…single, he doesn’t have anybody there. You

rig up a contraption that can hold the PICC line still so you can screw it into your

own arm. I mean that’s hard.

Virtually all nurses say they reassure caregivers and care recipients that they

should call if they have any questions or if the care recipient has signs or symptoms of a

problem. As one nurse says regarding a wound: “watch for infection, redness, swelling,

drainage.” Most all say their agencies have a 24-hour phone number. According to on

nurse, “They understand that they’re not alone. We don’t just say, ‘Here you go – have

fun.” “There’s always somebody available to talk.” “If you have any questions, call us. If

you want to call us while you’re doing the dressing, then we can walk you through it, and

that’s fine…” While caregivers I interviewed said they were comforted because they

knew they could always call, most said they tried to figure things out on their own and

called only if they felt it absolutely necessary.

Importantly, while some caregivers I interviewed learned substantially from home

heath, others were discharged without home health care or had trouble getting the

instruction they needed to complete tasks. Indeed, some of the nurses I interviewed were

also concerned because they knew of situations where patients were originally not

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assigned home health care. One nurse said she got a call from a family who had a child

undergoing chemotherapy treatment:

They sent them home with no instruction. They didn’t have a clue how to access a

port, de-access a port, let alone prime tubing, infuse chemo kind of thing. So I just

called the agency that I work for and asked them what they needed to do...The

family had to call their doctor… had to have the doctor call the hospital…and

then they got home health.

According to this nurse, although the family had seen the hospital nurses come

into the room and perform the procedures, “Nobody said, ‘here’s what you need to do.’”

Alice’s daughter did not have insurance at the time of her accident so Alice

applied for Medicaid for her, however she wasn’t assigned home health care by the

hospital rehab facility after discharge. Alice told me she was under the impression that

the hospital “was supposed to put her on waiver, and they never did, so I had to apply for

her to get (the) waiver, and it took a while for them to approve it.” Fortunately, Alice

knew how to perform the catheterization and other procedures, and had performed them

routinely at rehab, but being single, she said it was a trying period, doing everything

herself. Although her daughter helped her she said she felt, “Exhausted. I mean there was

no other way of getting around it. It was exhausting because you’re up all day and up half

the night and trying to keep the house clean and do the laundry and… everything.”

Alice’s story shows how payer sources greatly impact nursing services at home. It also

demonstrates how discharge communication between hospital and care recipients/

caregivers is crucial. Finally, the story shows how when skilled labor is performed at

home, it is not just the skilled labor, itself, that is a factor in the work process. Alice

needed to cook, clean, do laundry, do errands, she was “up half the night” and was

always on shift. Caregiver routines will be discussed in greater detail in Chapter 6.

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Barbara, who has helped her husband with multiple skilled nursing procedures,

took care of him after an organ transplant, which occurred several years ago; and she

explained that back then the center didn’t routinely assign home health. She and her

husband received a two-week training course in the hospital, and brought home a binder

that had tasks she was to perform. Three times a day she had to check blood pressure,

temperature, check for swelling and look for signs and symptoms. She said, “You can

imagine how scary that was –coming home with all of this stuff, and not having a nurse.”

The couple told me that now the center does assign home health care –which they view as

a very good thing. They commented at the time of his surgery, it was a fairly new

procedure and even his regular (non-transplant) medical care team did not know much

about the process. She said they really didn’t know how to help, “not that they didn’t

want to…they’re wonderful, but it was new territory for them too.” This story

demonstrates how sometimes new procedures and new technology can create additional

needs that should be considered in discharge planning in order to give proper support to

caregivers at home.

Ava received little instruction in the hospital about how to treat her husband’s

wound and was not assigned home health care. When she arrived home, she called her

family doctor and he arranged for home health to come out, but due to the delay, they

were not able to come for a few days. Fortunately, on their first day home, a family

friend, who was a nurse, called and offered to come and help. She taught Ava how to

irrigate the wound and Ava believed her to be a wonderful teacher:

She was just so gentle…it was like with every word she said, she taught me

something. Like, she said, ‘Fill the syringe up to here with this saline water and

then you take the …point of the syringe and stick it in the hole. And then you

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press your thumb down.’ And when you did that, then all of it started flushing. It

(the difference in instruction in the hospital versus from her friend) was just like

night and day. I just automatically knew how to do it. But she flushed…the first

30 ccs and we watched. So the next one, she told me exactly, I mean she said,

‘Now this tip has been in his infection so you want to wipe that off and…then you

put it in the water and you… suck in 30 ccs.’ She said, ‘Take the point,’ and even

though I was holding it…she guided it and that helped me. She guided it so that I

didn’t have to put the point in there the first time. For some reason that helped

me…and I was doing it –but I wasn’t at the same time –if that makes any sense.

Within a few days, home health arrived, and Ava had a good experience with

them. She said the home health nurse taught them more about the wound care and other

procedures and that they were extremely beneficial. Although home health was helpful

once they arrived, Ava was very grateful for her friend saying, “Had she not been there

that night, I would have been in trouble.”

Interestingly, two other caregivers said they learned how to do procedures from

family members or friends who were nurses, and an additional three caregivers said they

relied on nurse family members or friends for advice from time to time (This pattern was

also noted in the Donelan et al 2002 study). Morgan had to do several skilled procedures

for her husband including shots for which she received “very little instruction” in the

hospital and a feeding tube (placed as an outpatient procedure), for which “absolutely no

one showed me what to do.” For the feeding tube as well as catheterization procedures

she was told, “Hospice will teach you”. She said she called hospice but “it wasn’t a

priority with them.” She was told, “He’s not on the schedule.” In response, Morgan said

she “phoned a friend.” “I have a ton of friends that are nurses, and I had them come in

and show me how to do it.” Speaking of the medical procedures she had to learn, she

stated, “The whole pattern is …exactly the same…by the time hospice would ever come,

I’d already found somebody else.” Morgan also said she did additional research to find

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out more about her husband’s medical condition and used her contacts with dieticians to

understand his nutritional needs.

These cases illustrate how sometimes caregivers are able to obtain resources, and

even additional instruction through personal ties. Not only did some caregivers benefit

from friends or family members who were nurses and provided instruction and/or advice,

a few others said they benefited from having family members who worked in social

services and helped them understand what benefits they were entitled to. This linking of

private and public worlds, however, is not possible for people without such connections.

As Ava said, if her family friend had not come on that first night home, she “would have

been in trouble.”

It is evident that the caregivers in this study are active agents, and engage in

problem solving on their own –in addition to what they learn from their training. Several

caregivers described doing substantial research, including from on-line sources, to try to

supplement their knowledge. Several caregivers had issues because equipment, such as

suction machines, CPAP machines, and the like arrive via delivery people who may or

may not have a good handle on how to instruct caregivers.

It was delivered to my house…by whoever delivers suction machines. A lot of

times, what they do these companies, …will send out the machine and the person

that delivers it is a delivery person. They have no idea. They can set it up, but they

don’t instruct you. And I understand that, sort of …but it has to be followed and

coordinated by someone else, whether it’s a respiratory therapist, or a nurse or

something like that.

Caregivers said they often ended up reading the manuals or trying to figure out

the machines with other family members. One caregiver said they had “to kind of muddle

through and try to see what works.” Indeed as Albert (1990) and Corbin and Strauss

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(1990) find in their work on the elderly and those with chronic illnesses, respectively,

there is a great amount of trial and error in home care experiences. This “trial and error”

process also applies to the specific procedures themselves.

With suctioning, we learned that there were different methods and that…what

works for one person doesn’t necessarily work for the next one. So, we just sort of

learned what the best method was for him through trial and error.

In some cases, caregivers noticed that medical professionals did procedures

differently and so they came up with their own methods. When one caregiver learned to

bandage her husband’s leg, she said the nurses and doctors performed the procedure

differently, so, based on her observations, she came up with her own method, which

seemed to work well. In all cases, caregivers said they worked with care recipients to try

and understand what their comfort level was and what felt right to them. In some

instances when adult care recipients were available (generally, in the home) and offered

to tell me their viewpoints, they often talked about how they worked closely with

caregivers to determine the best course of action in situations that required judgment. For

example, in regards to bandaging his leg, this care recipient later told me, “She could do

it better than they did.”

Sometimes, caregivers said, it also took repeated experiences to learn the best

equipment or products to use:

And that’s another thing that you kind of learn through trial and error… Well

there’s a…fabric or there’s a sticky stuff that you put on a bed sore. There are

different brands. …This one –okay leave that on for two days, and this will help

that sore heal and so forth. There’s one –and I can’t remember the name –it’s…

the best one. When you put that on there, it’s gonna stay for about 4 or 5 days.

Some of the caregiving process involved trying to figure out a course of action based on

incomplete information. Sometimes procedures learned in the hospital don’t work well in

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practice. Sidney said his wife was getting nauseated every time he fed her through her

feeding tube – which was “three or four times a day”:

And it was like nobody could tell us why…Apparently we finally talked to the

right person and they said, ‘That’s not surprising. Are you pouring that in there?

She can’t take that much nutrition that fast, it’ll make her stomach upset.’… So

they get us a bag system…Just like a saline bag in the hospital and you pour the

can of stuff in…You hook it up and you regulate how quickly it goes in and it

takes, you know it’s at least 45 minutes to put the food in.

After they made the switch, Sidney said his wife felt much better. Several caregivers said

that home health nurses helped them come up with solutions to their problems. Ava, who

was not originally assigned home health, said after home health care was in place, the

nurses recommended products that helped, such as a cream that promoted the healing of

her husband’s tracheostomy stoma. Likewise, Isabelle said the home health nurses

recommended a Farrell bag as well as a mickey button (a different type of g tube), which

helped tremendously with her son’s g tube care. They also showed her how to use the

feeding pump, which was different than the one used in the hospital.

Conclusion

Caregivers come into a labor process that is not only influenced by the particular

illness or condition, but also by institutional practices and interactions with individual

actors. Caregivers with loved ones who had prolonged stays in rehabs or hospitals –

generally for critical injuries –received the most hands on training. Other caregivers in

the study had varied training experiences –some received quite a bit of training, others

very little. Several caregivers, particularly ones with loved ones in large pediatric

hospitals (though this was not always the case), were allowed to practice on

demonstration models and were able to use some of the pumps and equipment they would

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be using at home. In general, caregivers benefit from long periods of supervision when

they are allowed to practice or perform procedures, while being watched by medical

professionals.

Regardless of initial training, nearly all caregivers expressed anxiety at having to

do the procedures at home for the first time. However, those who received substantial

training in hospitals or rehabs were initially more prepared and generally relied less on

home health nurses to teach them specific procedures. Of those caregivers who learned

substantially from home health nurses, a few were able to learn gradually, but several

were shown only once or a few times and then performed the labor on their own. Payer

sources may play prominently here, as they directly impact how many times home health

nurses are allowed to come out and teach. A few caregivers said they benefited from

having written protocols, which gave them step-by-step instructions on the specific

procedures they were to do. It also appears that having the same equipment or pumps in

the hospital and at home greatly helps the learning process. In some cases home health

was not initially assigned and this speaks to the importance of discharge communication

and coordination between hospitals and caregivers /care recipients. Some caregivers who

received little or no training in hospitals and/or were not assigned home health relied on

family and friends who were nurses to teach them all or part of the labor.

Home health nurses confirm that training experiences in hospitals vary widely and

despite some evidence of very good or even excellent hands-on training, a common

scenario they see, is that many caregivers are shown very little and may be released with

limited knowledge of the medical condition or the procedures they are to perform at

home. Some may have false impressions that home health nurses will come and actually

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perform daily care. Because of the variability in caregiver/care recipient experiences,

nurses must manage expectations, find out what caregivers know, and assess if they are

really “willing and able” to perform the care. Nurses say it is important to build rapport

with families, especially since the home is “their territory” and “we’re the guests.”

Nurses establish common ground by not overusing medical vocabulary, speaking in a

common language, and emphasizing the common goal of helping the care recipient

maintain health. In general, nurses eschew socioeconomic status as an indicator of who

will be able to learn or provide good care.

In teaching the specific procedures, nurses employ individual strategies and

styles, however, the basic process is to demonstrate, let the caregiver/care recipient watch

and ask questions, and then observe a return demonstration. While many nurses prefer to

teach slowly, giving bits of information at a time, they are frustrated and may have to

change their teaching strategies when payer sources limit the number of visits. Nurses

say they give positive feedback and encouragement and they assure caregivers that they

should call them with any questions or problems. The caregivers I interviewed were

generally comforted by such assurances, but called only if absolutely necessary. It is

evident that caregivers become active agents in their care work, seeking additional

information and resources, and engaging in problem solving in implementing medical

procedures. Their experiences in performing procedures in the intricate context of the

home are explored in Chapter 6.

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Chapter 6: “Am I Doing This Right?”: The Weight of Responsibility

As seen in the last chapter, caregivers are active agents who problem solve as they

implement skilled medical labor into their lives. The caregivers I interviewed felt that it

was extremely important to do things in the right way. Although the evaluation of their

labor varied once they arrived home, they often engaged in processes of self-evaluation

or took to heart comments made by medical professionals as validation of their work.

Self-evaluation can be a tricky thing –especially for those who have little medical

background and who lack cases to which they can compare. Caregivers also indicated

they performed intense monitoring, and had the responsibility of negotiating logistics,

and the various bureaucracies on which they depended for resources. This chapter

explores the sense of heightened responsibility of caregivers as they implement skilled

medical labor on a daily basis.

Responsibility and Self Evaluation

In general, caregivers, regardless of their training, began work at home simply

because it was time that the procedures needed to be done. Helen learned catheterization

and shots for her son while in rehab, and when she got home and it came time to do the

procedures, she said she felt like, “Okay, here we go. Hopefully it’s gonna work!”

Caregivers often said they re-assessed their work, in other words, they self evaluated.

Said Phoebe, who also was trained in a rehab facility:

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At the point where I had to do the stuff, I just kind of did the stuff, and then

stepped back and said, “Did I do it right?” Did I…do everything that I was

supposed to do?

Caregivers differed as far as having continued evaluation of their work once they

got home. For Isabelle who learned a great deal in her one-month hospital stay, home

health nurses still taught her some procedures once she arrived home, and over time she

learned to change her son’s trach and feeding tube. Home health nurses used a doll to

help teach the trach care and through oral feedback gradually allowed her to take over the

procedure. Isabelle believed that the continued teaching and feedback helped her

immensely in being able to eventually learn the procedures. When Meredith and her

husband moved from a western metropolitan area to a metropolitan area in the Midwest,

they had to learn new protocols and were impressed that the staff at the pediatric hospital

had clinic nurses who also performed home care visits. Meredith said this continuity of

care meant a great deal to her. The nurses came out at night, and watched them hook up

their son to his medication, and then came back in the morning to make sure they knew

how to properly disconnect him. Meredith said she was given documentation, which said,

“Mom did a great hook up.” Meredith said this type of evaluation and follow up

contrasted greatly with her prior experiences with home health. Through time, including

periods of learning by doing, she said she “absolutely” felt confident that she could

perform the procedures.

Paul, who took care of his wife’s wound and drains, also received additional

evaluations from home health nurses after her subsequent surgeries:

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After her second and third surgery, I had to take care of that …and her

foot…and… they twice came in during that four-month period and watched me

do everything and said …‘You’re doing what we could do…It looks okay to us’

Paul, who had also received training in the hospital, felt extremely confident in his ability

to carry out procedures. When I asked him if he felt like he was doing a good job he said:

Absolutely… If there was any doubt in my mind I would have called…I would

not have let that go by the boards. If there was…any question, you know let’s get

a pro in here and do it.

While some of the caregivers felt they received adequate evaluation and feedback,

others indicated they received very little. They learned the procedures either in the

hospital or in a session or two from home health, and then began implementing them. If

they did receive some type of evaluation later in the process, it was more that they knew

that home health nurses were documenting that they were competent in the chart, as one

caregiver said the evaluation “was never direct”.

Clearly, continued evaluations and feedback help caregivers feel more confident

in what they are doing. Importantly, these feelings can vary greatly by caregiver. For

some caregivers, doing the procedure once or a few times in the presence of a nurse may

be enough. Others may perform the procedures after being shown a few times, but still

experience great levels of anxiety. Still others may feel that they need more time to learn.

Of course, complexity and the nature of the procedure also affect these feelings.

According to one caregiver, who had to learn multiple procedures such as a feeding tube

and catheterizations and did not feel she had received proper instruction or feedback, the

practice of a nurse observing her doing a procedure only one time was not enough:

I never did it the first time. I mean people say, ‘Oh you did really well,’ and they

think ‘I’m done’. Well gosh, let’s take that off and try it again –see if I can do it

well two times. They don’t give you that opportunity.

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In this case, the caregiver relied on friends who were R.N.’s to evaluate her and

give her feedback:

I showed them and I showed them, and then every time they came over I’d say,

‘Watch me, am I doing this right? And it’s okay to tell me that I’m not.’ You

know, and ‘If I’m doing something really bad, stop me…don’t let me keep going.’

Bridget learned to give IVs primarily from a home health nurse in one session.

She did the IVs for several weeks, during which time the nurse came in weekly to change

the PICC (peripherally inserted central catheter) dressing. When I asked her if she felt

like she was doing a good job at the time she said:

No. No, I didn’t. I felt I could have done much better -or should have been able to

do much better. That’s just me, you know. But anyway… you always feel like

you should be able to do it…

Interviewer: Did the nurse ever give you any kind of feedback on how you were

doing? Like did she ever tell you –you were doing a good job?

Bridget: No.

Interviewer: Or not a good job?

Bridget: No.

Bridget said what bothered her about doing IVs for her husband is “Not having

the confidence, you know, not knowing…just not knowing…all these things.” She said

that although she was able to perform the labor, it was not wise to be overconfident

because overconfidence can lead to mistakes. As she explained, “Don’t ever think,

‘…I’ve got this down pat now and it’s gonna be smooth sailing.”

Other caregivers, especially those who said they were not inclined toward

nursing, also had trouble expressing that they felt competent doing the procedures in part

because their lack of formal nurses’ training bothered them:

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I’m one that always kind of second-guesses myself. And even though I felt like I

had paid attention and you know, knew what I was supposed to be doing, I’m just

not real sure that, you know, I could do it. Which is one reason why I always got

the instruction sheet out every time and followed it to the tee. But you know,

again, it goes back to I just didn’t think that…I -- no nurse’s training –you know

I’m not a medical person.

And another:

I guess I feel like I do an okay job…I guess I probably always feel I’m not a

nurse…you know?

For some of the caregivers with loved ones who were eventually placed on

waivers, nurses came in on a regular basis to perform some of the labor. Nurses assigned

through waivers were either L.P.N.’s with R.N. case managers who supervised them or

R.N.s. In a few cases, aides were assigned to help with bathing and personal care.

Waivers, which are administered through state Medicaid offices, are assigned when care

is at such a level that it is deemed that the caregiver needs supplemental help –in most

cases to prevent institutionalization of the care recipient. For example, some families had

tracheostomy care, ventilator care, or other critical procedures that required 24 hour a day

monitoring. Nurses in these cases usually come in shifts, for example, so the caregiver

can sleep. However, no one with a waiver had 24 hour a day, 7 day a week nursing

coverage; and even in cases of waivers, the caregivers were still doing a significant

amount of the labor. (Some caregivers also had loved ones who were eventually placed in

hospice, and nurses would typically be in the house more often than with home health

care, but again caregivers were still doing a substantial amount of care work.)

Caregivers whose loved ones had nurses through waiver programs had the option

of running things by them more often. Phoebe said she was able to ask a nurse if she had

specific questions about procedures and Isabelle said her ongoing relationship with

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nurses helped immensely. Nurses have made suggestions in regard to specific medical

procedures, or have told her things to ask her doctor about. Through her ongoing

experiences, Isabelle and her husband have obtained a great deal of knowledge about how

to take care of their son. Now the home health agency asks her if she would be willing to

train or mentor some of the LPNs who are assigned to them. Speaking of these LPNs,

Isabelle said:

And we’ve even had some that the nursing agency will say –normally they have

to have at least a year of pediatric experience –we’ve had some where they say,

you know, ‘She’s fresh out of school, would you be willing to sort of mentor

them?’ And one of the nurses we have…she was one of those. She came right of

L.P.N. school. But they said, you know, ‘She’s really good. She’s gone through

all our training.’ And that was sort of nice; it was, you know, you could sort of

train them to exactly what (my son’s) needs were.

In general, the more caregivers felt that nurses and doctors were available to

them, and the better their relationship, the greater their comfort level. All caregivers who

were assigned home health said they received 24-hour phone numbers from home health

agencies so they could call in case of an emergency, but many said they did not do so in

unless it was absolutely necessary. A few expressed guilt because they felt they should

be able to do the procedures on their own, or that they didn’t want to bother the nurses. In

general, however, if caregivers believed a situation to be potentially serious, they said

they spoke up and called in –they would not hesitate if they really needed something. On

occasions when nurses or medical professionals –especially from the hospital or doctors’

offices –called to check on them, (or in some instances, gave them their cell phone

numbers), this had special significance and helped caregivers feel more at ease.

Some caregivers noted, however, that in terms of actually performing the labor,

talking over the telephone only goes so far. As Barbara told me, “There’s only so much

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you can do over the phone.” Another caregiver demonstrates this fact when she tells me

of the time she accidentally pushed air into her son’s IV and then called home health:

So I picked up the syringe that he had been playing with and pushed it in. And I

knew like as soon as it went in that it was air. Because there was no resistance,

like it just ‘shoop’… I was like, ‘Oh my God!’ So I clamped the line right away…

I called home health care and I said, ‘I just put in…about 3 ccs of air!’ You

know? You’re thinking back to every Matlock and every movie you’ve seen. You

know, where … they kill somebody with the…syringe of air. And I’m trying very

hard not to freak out…and so I’m trying to stay… very calm. And the home

health care nurse was like, ‘Yeah, it’s fine…but why don’t you just try to pull

back on the line and see if you can’t get that air out?’…It’s like, ‘Okay.’ And I

think my biggest mistake at that point was we hung up. Like I wish the home

health care nurse would have said, ‘Why don’t you go do this’, you know? And

she’s like, ‘Okay.’–and hung up. So since this one of the (first few) times (I had

performed the procedure)…I’m feeling uncomfortable. I went to pull back on the

PICC line; well I had never done that. I had no idea how much of a vacuum…It’s

…very hard - to pull back. I didn’t realize. Now a nurse probably knows the

correct pull, but not having done it before… I’m just expecting it to…flow right

back…and… it wouldn’t. And I had to pull pretty forcefully and I’m thinking,

‘I’m gonna turn his arm inside out or something.’ Like I…had to pull pretty

good… So …when I pulled back on it, the blood was real choppy. I didn’t know

if that was like, normal or not, so I call home care back. And I said, ‘You know

the blood –it’s…real choppy and everything.’ And they said that that was fine you

know; just keep pulling back on it. And we hung up again. And I… believe I had

to call back a third time… And I just remember that feeling of ‘I kinda wish they

had stayed (on the line)’, cause it was new – to me.

In this case, the PICC line was checked the next day in a doctor’s clinic and found

to be in good working order, but the story shows how communication over the phone has

limitations and can leave caregivers feeling inadequate when they are trying to resolve

problems. This can be particularly stressful for caregivers who do not have the benefit of

professional experience and other comparative cases. Moreover, the situation contrasts

greatly to a hospital setting, where there are colleagues and supervisors to consult.

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In speaking about their perceived ability to perform the work, some caregivers

referred to assessments from the care recipient, who gave their opinion as to whether

things were going right:

One day (my husband) said, ‘From now on I don’t want anyone doing the trach

except for you.’ He said, ‘You get the seal right.’ And that made me feel

confident. You know once I get some kudos… I’m like ‘Woah! You can’t stop

me!’ (Laughs)

Caregivers often referred to medical outcomes or doctor’s assessments of the care

recipient’s condition as a test of their abilities. In instances where outcomes were

measurable, caregivers knew that what they were doing seemed to be working. When I

asked Annette if she felt like she was doing a good job in the wound care she performed

she said:

I guess I never really thought about it. I just did it. And we could see a difference.

Cause they would always measure it. Whenever they came they always measured

it, so you could tell.

Alice performed multiple procedures for her daughter, including wound care after

a surgery. When she and her daughter visited the doctor four days after the surgery, the

doctor told them that the wound was already healing. This pleased Alice greatly, and

made her feel that she was doing a good job. Other caregivers said they took to heart

comments made to them by doctors and medical professionals as to how well the care

recipient looked. Speaking about her son’s trach and g-tube stoma (opening), one mother

explained:

And I always get compliments when we go to the hospital that both sites are the

best that they’ve ever seen. And…they said usually there’s lots of redness or rash,

especially the older they get, and…his is just so clean and everything. So, you

know, we’ve had that. And just the fact that …he’s come as far along as he has…

…A lot of people have said they feel that it’s the care he’s getting at home –

between us as a family and then the nurses that work with him, too.

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And according to another caregiver, who took care of her son after his spinal cord injury:

We’ve had like what –two doctors –tell us that we …take really good care of

him…I guess that makes you feel good, you know? We must have been doing

something right.

Thus, many caregivers, when asked if they felt like they were doing a good job,

felt that the most important judgment of their work was the health of the care recipient or

the opinion of the doctor as to how the care recipient was doing. This judgment of

performance based on medical outcomes, however, can place a great amount of worry on

caregivers who are often dealing with very serious conditions, which have many possible

health complications. In many instances, caregivers, despite all their efforts, are battling

infections and other problems that are worrisome and sometimes difficult to manage.

This is particularly important because caregivers do not have the benefit of bureaucratic

standards and resources found in the hospital such as quality control procedures and

colleagues with whom they can share work or troubleshoot. Phoebe related her concern

that although she tried to do everything very carefully for her son’s in-and-out catheter,

she could not prevent his infections, so they eventually had an indwelling catheter placed:

No matter how sterile I made it, no matter how… careful I was … –he kept

getting infections. So we had to go to the doctor and take care of it.

Another caregiver gained confidence over time giving IV medications, but said she

worried once when her son spiked a fever while on an IV drug she administered. She had

to mix the drug first –something that would have been done by a pharmacist in a hospital

–and then administer it with a large 60cc syringe which requires a lot of strength and

manual dexterity when pulling back. She said she worried if her lack of strength and “not

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being able to pull back…kind of going in and out” had “contaminated” the drug, because

perhaps she had inadvertently touched the syringe plunger.

Thus, implementing skilled labor can be difficult for caregivers with no medical

background and no experience in performing similar tasks. Interestingly, two caregivers

used the analogy of learning to drive a car to describe their feelings of learning the labor

over time. As one caregiver explains:

It’s just doing it. It’s just repetitive. It’s doing it every day in and out. And it’s like

with anything, like learning to drive a stick shift… ‘How am I gonna steer, shift,

push the clutch in? What if I have to break?’ You know, it’s all those things; and

then one day you’re just doing it, cause you’ve done it enough. You know it’s just

–it’s experience. It’s just doing it and not messing it up. And we have messed it

up. But see –that too –you learn from your mistakes.

Indeed, several caregivers said they made mistakes during the course of the labor.

One caregiver describes an incident at home regarding her son’s feeding tube:

(My son) had the feeding tube one night and we have what’s called a Farrell bag,

where it comes out of the one bag. But then there’s another bag… where if it gets

blocked or it can’t go through his stomach or his stomach’s too full, it can back up

into that bag. There’s a clamp here, there’s a clamp here, there’s a clamp here –

there’s three clamps…I forgot to unclamp one. And so I came in in the morning

and that Farrell bag was full of formula. And since he gets four boxes, it’s a great

amount of formula, which is more than a Farrell bag can hold. And at the top of

the Farrell bag, is this little filter. So instead of just overflowing, it sprayed

through that filter. … As soon as I walked in, I knew something was up cause I’m

like, ‘Okay…- formula all over the floor… it was sprayed all over his book!’ Like

I thought I should have been in here at night and just seen that stuff spraying

everywhere! Cause I’m sure every time it pumped it went shewwww.

Shewwwww. It took me…about three washings to get the stickiness off the floor.

This caregiver was able to convey this story with some humor because her son

was not hurt, although he did not get the feeding he was supposed to that night.

Sometimes, though caregivers worried quite a bit about their mistakes. One caregiver said

she forgot to mix in the antibiotic powder before infusing an IV, so the care recipient

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received only saline in the dose. Another said she forgot to unclamp an antibiotic and

when she came back to check, it had not been infusing so the dose was delayed. Another

caregiver said she “felt like a dirty dog” when she overslept while giving IV’s. She told

me, “I just felt terrible cause I overslept, but it only happened once and that was toward

the end.” She said she gave the antibiotic an hour late and then told the home health

company what she had done. They told her, “That’s okay, it’s better than not giving it at

all.” One caregiver realized she had administered lipids at too fast a rate, which she knew

could potentially be harmful to the liver. When I asked her what she did when she

realized the mistake:

Oh, I freaked out. Totally freaked out and called the nurse … ‘Does he need to

come in?’ She’s like, ‘Mmmm does he look okay?’ I’m like, ‘Yeah he looks

fine.’ ‘Okay he’s fine.’ They did it at the hospital too. One of the nurses did it

too…. My husband freaked-- he caught it. We catch so much stuff at the hospital.

Indeed feelings of worry or guilt about loved ones, and the importance of the

caregiver/ care receiver relationship cannot be over emphasized in this process. At times,

caregivers witnessed health changes in care recipients, that despite their best efforts, they

could not alleviate. Caregivers often feel very emotional when such changes occur. When

I asked one caregiver if he felt competent performing the medical procedures for his wife

he related:

When her breathing was really bad, right around the time that she passed away,

when she got congested, she didn’t make any bones about the fact that the cough

assist (machine) made her feel claustrophobic... She was like more afraid of

putting the…cough assist up to her face…than not being able to breathe. And I

felt pretty inadequate that day.

Some caregivers worried additionally because their own health problems

sometimes made it more difficult to administer care. One caregiver felt badly because he

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believed his back injuries interfered with his ability to provide care for his wife. “Twice I

had to call my neighbors because …she slipped and I couldn’t get her up by herself.” He

said, “It was very frustrating when I could physically not do certain things…” Indeed,

four other caregivers said that they had injuries or illnesses themselves, which often times

made it more difficult to perform the care work.

Virtually all caregivers, even those who were tenuous or second-guessed their

own feelings of competency, believed their ability to do the job increased over time.

Over time, caregivers weaved hospital calls, professionals that came to the home,

doctors’ visits, and periods of trial and error as labor processes unfolded. As they

performed labor, the routine started to become as Bridget, Meredith and Elizabeth

expressed, an “old hat”, or as a few caregivers said, “Like brushing your teeth.” Gail said,

“You can do it and not think about it.” or as Nancy commented “it becomes part of

normal for us.” However, caregivers often said they needed a period of training or re-

training if procedures are intermittent. For example, in cystic fibrosis care, daily regimens

include breathing treatments and chest physical therapy. Caregivers may do IVs only

during periods of a lung infection and several caregivers noted that it would take them a

while to remember the routines.

As caregivers performed the labor some expressed that new procedures seemed

easier to learn and negotiate. For example, Faye initially learned several procedures such

as catheterization and taking care of a tracheostomy and ventilator while her son was in

rehab. She later learned to give IV antibiotics at home from a home health nurse and felt

the procedure went very smoothly,” They…tell you exactly what you need to do…you

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know, they hold your hand.” When I asked her if she thought the skill was easier to learn

because she was already doing so much skilled work, she said, “Oh yeah, it was just one

more thing you added into the routine during that particular time.” In a few cases,

caregivers also felt it was easier to add procedures rather than take the care recipient in to

have them performed. One caregiver had to take her son to the doctor’s office across

town once every month to have the indwelling catheter changed. She said:

And they told me that I had to do it every month. And I thought I’m not coming in

here every month. I’m not taking him out of school every month just to come

here… So I started doing it myself. They did it the first time, I helped the second

time, and the third time I did it myself so they could make sure that I knew what I

was doing. And I changed it every month after that.

Some caregivers who performed multiple procedures questioned their

effectiveness in certain procedures, but not others. One caregiver never felt totally at

ease using the cough assist machine. He learned how to operate the machine from an

equipment sales person who did a demonstration at their home. The first machine failed,

and the company had to come a second time with a new machine:

I didn’t know if I was giving her enough of an inhalation to make the cough thing

work. We set it. And it was just inhale cough…but timing was part of it too…

It was a fairly complicated machine…We just never had to reset the dial. Had we

had to, I might have felt a little, a little inadequate there.

Another caregiver said she never gained total confidence in her ability to

catheterize and suction:

The feeding tube I felt totally competent on and… of course, the oxygen. The

BIPAP, I felt competent on. I just don’t think, I don’t think it was my error, it just

was frustrating, but I knew I was doing it right. Um, the catheterization …

probably about 75% because I don’t think I was always getting him; I know I

wasn’t always getting him drained… and I was hurting him. Now what I

understand is it always hurts when you catheterize somebody. But I still felt like it

was something I was doing. I mean if I did it right, it wouldn’t hurt. Suctioning –

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never –totally incompetent the whole time… Never, ever got (it). The

shots…competent.

Logistics and Organization

Not only must caregivers learn specific procedures they must also learn how to

incorporate skilled medical labor into their home lives (See also Corbin and Strauss

1988). Foremost on their minds are often the feelings of the care recipients, who may not

feel physically well, or may be tired from hospital stays. According to one caregiver:

The hardest part was moving him because he had the cervical collar, he had the

tube in his neck he had the PICC line and he had the feeding tube… So it was just

like almost, it almost took two to move him. I mean (my husband) would lift him

and I’d have to maneuver all the stuff around… He didn’t get up very much (at)

first… and then he would get so dizzy that he would mostly be reclined in his

chair.

As discussed in Chapter 5, arriving home after discharge can be frightening and

overwhelming. When Barbara came home with her husband after surgery, they had not

been assigned home health care and she said for a time she felt like she “was just holding

my own… but I felt like at any minute I was gonna drown”. At the time, she was trying

to work full time outside of the home and said “I …felt like we just continually put out

fire after fire after fire.” Another caregiver reiterated this feeling:

It seemed like for the first month or so, there was no rest…It was always like a

constant worry. ‘Are we doing everything?’… There was always something going

wrong, we made two or three steps forward and then five steps backward.

Caregivers not only had the actual medical procedures to perform, but also had to

figure out the best way to manage logistics and organize supplies:

It was all just in boxes and I was like, ‘What?’ And until you figure out, ‘Oh,

okay, this is what you need…–everything looks… all the tubes look the same. So

now I have it all ‘chu, chu, chu’ I mean…– I can do it in my sleep. But yeah, it’s

very overwhelming… ‘Where am I gonna put this stuff? …‘How am I gonna keep

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it clean? …How am I gonna keep my (other child) … out of it…How am I gonna

keep this part sterile while he’s in his crib and keep my gloves sterile, and what if

he moves?’ I mean there’s all kinds of logistical things that nobody can teach you.

You have to learn it aallll on your own.

In terms of performing the actual procedures, several caregivers reiterated that the

work required a great amount of concentration and that it was necessary to “really focus”.

According to Faye, she had to get into a routine “like clockwork”. “As long as you get

into a routine, then it’s not as overwhelming.” She, like many other caregivers told me,

“You just take one step at a time.” Phoebe said she takes things:

One day at a time… Sometimes one minute at a time. Something comes up and

I… gotta think, ‘Okay wait, I got to take care of this first, then this, then this, and

then I can do this.’

Several caregivers said it is extremely important to allow yourself enough time to

make sure procedures are done correctly. You had to “really pay attention to what you

were doing and allow yourself enough time to do it right.” Faye said that the

consequences of not doing the routine work could be extremely harmful and so

“sidestepping” is “just not worth it.”:

Give yourself plenty of time…otherwise…if you get rushed for time, you get off

your routine, and you forget what you’re supposed to do; and then, bad things can

happen... If someone teaches you how to do something, and you learn how to do

it, when you come home, you do it that way. You know, you don’t sidestep. You

don’t, ‘well I don’t need to do that’.

In order to carry out the proper procedures, caregivers said it was necessary to

plan ahead, as much as possible. According to Beverly, the labor requires…”discipline

and planning.” Says Paul:

There’s only one thing you can do at a time successfully and so you have to

allocate a time slot. For instance, that it’s gonna take an hour and a half to do the

two jp drains and pack this, and it’s gonna take another half an hour to unwrap the

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foot, clean the foot, put the silver solution on there, and re wrap it. You’ve got,

you’ve got area clean up to do, your hands…it’s gotta be sterile.

Caregivers developed strategies over time to get their arms around the labor and

the routine. Some said they made lists of things to do, or like Rita, they wrote down lists

of medications. Caregivers also made charts and kept detailed documentation of medical

records in computer files so that they could be referred to easily.

Marcie and others who gave IVs said they gathered supplies ahead of time so they

were ready to go at the time of infusion. Some caregivers kept the supplies for the

upcoming infusion in a Ziploc bag or on a tray. According to Marcie:

And so I would go ahead and put the heparin and the saline, and three syringes

and the tubing, and you know, I’d put everything in a Ziploc bag so then when I

was getting up at 5 o’clock in the morning…I could just get one of those bags out

of the box.

Caregivers also had to determine the best place to perform procedures and this

was dependent in part on the necessary equipment and the timing of the procedure. For

example, IV antibiotics or tube feedings performed at night were most often performed in

care recipient’s bedroom. Several caregivers who were giving IVs kept the boxes of

supplies in a dining room and a few kept them in the bedroom. Lauren, who was also a

registered nurse, worked with the bulk of her supplies in the dining room, and had a tray

in the bedroom with her supplies for the upcoming infusion. She said, “I guess that was

the nurse in me that…has to be organized with it.” When I asked Marcie why she used

the dining room to store boxes of supplies she said,

You don’t want it in the family room, where it’s getting pushed around, you

know? It’s just in the way. So the dining room was a place I could put it. It was

accessible but not in the way.

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As prior scholarship has shown, home medical equipment often causes a re-

negotiation of existing space (See for example Angus et al 2005). Angus and colleagues

(2005) found in their study of households that received home care services in Ontario,

that caregivers and care recipients experienced interruptions in terms of their feelings

about household aesthetics and order and cleanliness and that sometimes home care needs

exceeded the limitations of the home (p. 169). In general the caregivers in this study

looked at the medical needs and arranged their homes, as best they could, in order to meet

those needs.

One caregiver later converted her dining room into a pantry. She used the pantry

to store medical supplies on an ongoing basis, as the need for them increased. Several

caregivers said that they tried to keep things organized or in one place, so that the

medical procedures did not overtake their home lives. According to Barbara:

One of the things that I try to do is to keep our home a home and not a hospital.

We try to keep everything put away or in one spot… so it’s not all over the place.

And we have certain spots that we keep certain things and that helps.

This delineation of the medical and non-medical was one way that some

caregivers chose to organize. Sometimes, however, caregivers also realized they must

live with a little more clutter. According to Nancy:

Actually you just learn to say, well, my house doesn’t have to be perfect

anymore...I was…a neat freak, and I just can’t be. I finally just gave up. (Laughs.)

There’s gonna be clutter. There’s not anything really I can do about it.

Another caregiver smiled as she showed me the refrigerator in her garage that was

originally to be used only for her son’s medical supplies. She said her husband had

declared, “Nothing else can go in here!” But now she joked, “The beer’s in there too!”

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Some of the caregivers also used humor in talking about how overwhelmed they were

with the supplies at first, and how they gradually became used to them. When one

caregiver described how much room the antibiotics and supplies took up, I asked her if

the antibiotics had to be refrigerated. “No –room temperature,” she said. “ I’m glad. I

wouldn’t have had room –I’d have had to freeze ’em!”

Sometimes bringing home medical supplies caused dilemmas when the home did

not have enough space to accommodate them. According to one caregiver:

I lived in a little two-bedroom apartment. And to get into my apartment you had

to go up on one step, which was very difficult with a wheel chair. I mean my

neighbors helped me around as far as getting her in and out of the apartment and

stuff, and holding the door for me, and that type of thing. But … it was tough

because her hospital bed was in my living room. …All of her supplies were

in my living room and my living room was half the size of this…living room right

here. I mean it was half the size. And it was wall-to-wall furniture. There was no

room for anything. And if she was in her wheel chair, you couldn’t get around in

my living room. There was just no way. No room whatsoever. So… it was rough.

This family later moved in order to provide more room and better

accommodations for medical care. Indeed, caregivers from five other families told me

they had moved either to provide a home that accommodated medical needs, to be closer

to quality care, or to move in with adult care recipients. Caregivers from seven additional

families reported significant changes to their homes including widened doors, ramps, or

changes to the floor plan. I toured some of these homes and saw how families made

accommodations for medical needs. I was also able to observe some of the equipment

they used, such as hoyer lifts, vents and suction machines.

Monitoring and Tending

Besides the performance of the actual procedures, and managing the logistics, a

significant part of the medical labor at home involved monitoring for changes in health.

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This often involved a great deal of judgment and troubleshooting. Paul said he relied on a

range of symptoms to judge whether he needed to call a medical professional for help:

For everything that I had to do… there was a range. Uh, let’s just use the

packing, okay…because it’s not always a numerical range. Okay, the range is the

packing came out soaked and I was able to replace it and everything went

normally. Now, out of range, I pull out the packing and it was reddish brown. It’s

not been that way before, what do I do? Well it’s probably not for me to do

anything, but it’s for me to call somebody like the doctor or a specific nurse, and

ask the question based upon what I found…Cause normally you’ll have some

blood down there and it will discolor it, so just go ahead and replace it. However,

this should decrease as time goes, although you may continue to see it for a while.

Okay, but it’s not a case of did I know what to do with the situation to correct the

situation, it’s what am I gonna do with the situation. So I knew what the ranges

were –…blood pressure, temperature, this type of thing. Is her pulse racing?... I

could evaluate the symptoms to know if it was out of range…and then seek

additional help if necessary.

Caregivers said that monitoring symptoms takes vigilance. At times, in

describing their own anxiety in monitoring, caregivers used humor to convey the true

intensity with which they approached the matter. When one couple brought their son

home from the hospital, they worried about a spike in blood pressure from a condition

called “autonomic dysreflexia” (AD), which they learned can happen quickly for people

with spinal cord injuries. Expressing his concern, the father said they were “watching

every move he makes”:

We’d been worried and threatened with the possible AD symptoms. ‘Catch it. Nip

it in the bud before it escalates. Oh… was that a cough I heard?’

Another caregiver describes her vigilance in monitoring her child for symptoms:

Every minute, I am assessing that child. Does he look like he is getting sick? Is he

hot? I mean –I just took his temperature cause he felt a little warm. His lymph

nodes are a little big this morning, and I’m like, ‘Oh, my God!’ You know, every

minute of the day it’s in the back of my mind.

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Monitoring didn’t just take place during the day. Some caregivers said they stayed

awake to make sure they could still hear their loved ones breathing. Some changed

sleeping arrangements or bedrooms in order to be nearer to the care recipient. According

to Bill, “It was a matter of claiming out space at the foot of my bed for his hospital bed.”

Another caregiver related:

He never slept on the bed, he couldn’t. He slept in a chair or something like that…

We had a hospital bed, but he got to where he couldn’t sleep in that either…In the

beginning I’d sleep upstairs, and then I got afraid that… I wouldn’t hear him. And

I got to where…I slept downstairs on the couch.

Caregivers also reported using wireless doorbells, baby monitors, or cell phones

so loved ones could call for help if they needed it. The interruption of sleep was a

common theme. At night, caregivers often set alarm clocks to make sure routines were

performed at certain times. One caregiver describes the routine when she gave IVs:

I feel strongly that if you’re gonna heal and get better, you need to sleep…So my

window of opportunity to sleep, really for 18 months, was from like midnight

to…well I had to get the drug –the drug had to be …out of the refrigerator and at

room temperature before we stared the infusion. So…I could get to bed at 12:15

and get up at 4 to get the (drug) out of the refrigerator…then get back up at 5 to

start that infusion…

Caregivers said they often prioritized their loved ones’ sleep over their own. As

Elizabeth said, she “charged up for those periods of time” when procedures were needed.

Nancy said, “I have my breakdown afterwards.” Some caregivers had to turn their loved

ones as much as every two hours at night to prevent bedsores. Several caregivers also

talked about being awakened at night by alarms sounding on pumps, or medical

equipment.

I mean there were nights when I was in tears because the alarm wouldn’t stop

going off. And …I would take it off and I would start all over. And there (were)…

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a lot of pieces to it, to get it on, and to get everything set, and him comfortable,

and all this, and then turn it on. And then two minutes later the alarm’s going off.

In monitoring symptoms, some caregivers also expressed that it was sometimes

difficult to ascertain whether a problem was truly significant or not. This can be

especially difficult if the care recipient has cognitive or physical issues that interfere with

the ability to express his or her pain. Hannah felt guilty that it took almost six months for

doctor’s to diagnose her son’s gall bladder problem because he was unable to tell them

specifically of his pain. “Leading up to (the diagnosis) was very, very frustrating and

difficult.” Moreover, in an illness such as cystic fibrosis, symptoms may not be clear-cut.

For example, coughing is necessary in order to clear the lungs of secretions, but

caregivers are often told to be alert for increased coughing as a symptom of possible

illness. One caregiver told me she had often thought of getting a stethoscope and listening

to the lungs as nurses listen. Another said her child once developed an increased cough

but because she had been complaining about different pains, she had a hard time

determining if there was truly a problem:

She was complaining about her back hurting … and she had been just

complaining you know ... She’s just going through this ‘everything hurts –my

belly hurts, my head hurts,’ … and you didn’t know. Got to the point where I

didn’t know what was real and what was just …attention for some reason. So, (I)

took her to clinic and … they did an X-ray and she had pneumonia. I talked to the

doctor and she says, ‘Uh next time she has back pain, and she’s coughing…’ And

I said, ‘I know, I know, but it was like the little boy that cried wolf.’ They

encourage you to call but then you’re like, ‘Oohhh should I call?’ That’s the

hardest thing – trying to decide when… you should call. When is it bad enough to

make a call?

In monitoring and tending, caregivers often identified bacteria as the enemy to

fight; and several caregivers said they went to great lengths to keep things clean. Indeed,

skilled medical labor does require clean or even sterile procedures, and often involves

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cleaning or sterilizing medical equipment or tubing, maintaining a sterile field, and

performing maintenance work such as changing filters in machines. Moreover, for those

with breathing issues, some caregivers described extra precautions such as keeping live

plants out of the house, or changing showerheads more often to reduce bacteria. These

protocols became part of home life.

Some caregivers said they had initially worried excessively about cleanliness. For

example, one caregiver said her husband used to be “so uptight” he used to “scrub down”

the entire kitchen. “We know what we’re doing now,” she said, and they have learned

how to be more relaxed while still maintaining a sterile field for procedures.

Annette said they kept the house so clean during her mother’s chemotherapy treatments

and wound care, that they made a family member who was a plumber strip at the door.

She said she and her family, “went too far” however on some of the precautions, because

they did not know how much was enough:

And we kept the house sterilized. We wiped down everything. After she’d have a

chemo treatment, we took it too far because we thought …you know, that maybe

we might get something. We didn’t realize that it wasn’t that bad. So her first

time through chemo…we would sterilize the bathroom…When she was done,

we’d get her out of the bathroom, take her back to bed, hold our breath, flush the

toilet, and run out. We couldn’t shut the lid because she had a great big toilet seat

on there… And that was crazy, we didn’t need to go that far, but nobody told us

that we didn’t need to do that. We didn’t ask that.

Isabelle said home health helped her to live in the “real world” about matters of

cleanliness:

And so…when the nursing agency came in…the supervisor was really

helpful…she continued that training with the trach care…You know, ‘The

hospital taught you this, but here’s the real world and how trach care goes’…For

example, in the hospital they made it sound like our house had to be just

completely sterilized…and…we needed to get rid of all the animals, and this and

that. And then we found out –no –that’s not necessarily true. If you had the

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animals prior, it’s not gonna make any difference. So they were really good with

that.

As seen, developing and implementing standards of cleanliness for specific

medical procedures often takes time and judgment. Moreover, As Corbin and Strauss

(1988) note, medical labor performed in the home often alters other labor processes as

well. For example “unskilled” work such as feeding and tending may be affected. Indeed,

as DeVault (1991) finds, there is a great deal of preparation and planning in feeding

family members –and there may be even more so if there are special diet needs or

restrictions. Several caregivers commented on the necessity of preparing nutritional

meals, high calorie shakes, or pureeing food if care recipients had difficulty swallowing.

Despite receiving training on the technical aspects of much of his wife’s care, Paul said,

“We went home from the hospital without nutrition information –which I didn’t know we

were supposed to get –without…good information on how to care for her.” Paul said this

lack of information led to him do a great deal of research on his own to understand more

about his wife’s nutritional needs: “ I have expanded my boundaries significantly to try to

find the resources, and …to read as much as I can about how to do what I’ve gotta do.”

Caregivers also discussed strategies they used to help care recipients with

personal care and grooming. For example they wrapped wound dressings or PICC line

sites in plastic wrap or clean garbage bags so care recipients could shower. Some used

shower chairs when care recipients had mobility problems or were weak. Caregivers also

described the importance of simply being available. Bill said it was necessary to respond

on “an as needed basis”, and he would sometimes prepare heated blankets when his

nephew suffered cold chills. Caregivers also described other activities such as

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accompanying care recipients to doctor’s appointments (some at great distances),

coordinating medication deliveries, making trips to pharmacies, and scouring the internet

for new sources of medications or equipment.

Variability Comes Home

As opposed to bureaucratic settings, which have standard shifts, care at home

takes place over a 24-hour period (Ungerson 1990b). There is a vast difference between

caregivers’ schedules and the bureaucratic time schedules of organizations on which they

depend for resources –for example delivery companies, vendors or pharmacies (See Kane

1991). One home health nurse I interviewed observed this difference when she told me

about her frustration when patients are discharged “at 10’clock at night from the hospital

for IV therapy” with only a prescription. Noting the late hour, she said, “A prescription,

what am I supposed to do with that?”

Indeed, the success of home health labor greatly depends on coordination with

various groups and agencies in order to obtain the resources and knowledge to perform

the care. Caregivers often report issues with having to deal with bureaucracies or other

parties such as suppliers, pharmacies, equipment vendors, and even home health

agencies. In general, caregivers are comforted if they can establish familiarity in these

processes. Several caregivers expressed that continuity in labor processes –for example

dealing with the same individuals at a pharmacy, finding doctors who understand their

needs and respond, having the same home health nurse –helped greatly with coordination

processes. Some caregivers talked highly of caseworkers and home health nurses who

were proactive in helping them order proper equipment, and even anticipate future needs.

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In general however, the need to work with various outside agencies and players

means that caregivers often experience a great deal of variability. As noted in Chapter 5,

differences in medical equipment and supplies between hospital and home complicate the

labor process for caregivers. One caregiver described his experience with trying to find a

replacement for a feeding tube piece:

There were some things that were disconcerting…You’ve got the little tube that

comes out and then there’s a three way snap shut gizmo that you put…the syringe

tube into. And when that got nasty and it came time to replace it, well we couldn’t

get the same piece; nobody could find the same piece. It worked really, really

well. It’s the one they put on in the hospital. But the supplier…they sent me

everything that they could get their hands on…

Although the caregiver said the new piece “became workable” he was never able

to obtain the same kind he was used to from the hospital.

Indeed, homes lack the resources and support of a hospital. Several nurses I

interviewed stated that a significant difference in home and hospital care is that in a

hospital, supplies are readily available. In a home, supplies must be delivered or shipped.

Caregivers may or may not be able to make certain requests, or in some instances may

have to pay more for certain brands or items. Equipment and supplies may come in

different packages or have different features or designs, which alter the way they are

handled or used.

In many cases payer sources, bureaucracies, or institutions set the types, or

particular brands, of supplies that are allowed. For example, insurance companies may

only contract with certain suppliers or pharmacies. Medicare now bundles supplies in

with the reimbursement to home health agencies (who are then responsible for them)

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while other payer sources do not. When relationships with bureaucracies, providers or

home health agencies change, new supplies may be introduced:

When we changed home care companies, we get brand new pumps we don’t’

know how to use. So someone’s gotta come out, teach us how to use the pumps,

gotta go over the manual. Different tubes, sometimes…they stop carrying this

certain manufacturer tubing so we get a brand new (one)…And I hate the one we

have now cause … for some reason…it kinks, so that’s why he was beeping off

every two hours last night. And… home care companies carry different products.

I hate the caps that our home care company uses now. Hate them.

Supplies and equipment may also come from multiple sources, further

complicating the delivery process, and causing additional negotiation:

Yeah the supplies come from different areas of the United States… some supplies

now we have to call a different supply place to get those. So it’s really confusing.

The people who are taking these orders do not know anything about supplies

and… it’s really aggravating and we keep getting the wrong supplies and they

won’t take it back. So…then we finally just said, ‘The heck with it.’…There’s

another local company …, which is supposed to be really good, and I checked

with our insurance, and they will (cover it).

Indeed, some caregivers reported receiving wrong supplies, receiving equipment

that didn’t work, or having unacceptable delays in equipment delivery. One couple

received the wrong “adapter” for their son’s PICC line when he was discharged and had

to work with a home health nurse in order to get the proper piece. Another couple had an

incident where the balloon that holds the g tube burst in their child and the g tube began

to come out. Although they knew how to replace it, they soon realized the supplier had

sent the wrong size, causing Randy, the husband, to make a frantic drive to the hospital to

get a new one. One caregiver had to wait six months to get parts for a wheel chair for her

child, when Medicaid had already paid the supplier for them. At the time I talked to her,

she was ready to call the supplier and tell them she would inform Medicaid if the parts

were not received.

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Caregivers also talked about hassles when payer sources or suppliers limit their

supplies on hand. One caregiver was upset because Medicaid would not refill supplies or

medicines until there is a minimum number on hand and will not work with her on

coordinating the medicines, so she can condense trips to the pharmacy. Another caregiver

had an insurance change, which caused her to switch pharmacies. The person who

ordered her supplies at the pharmacy would only give her the exact number she needed,

with no room for error. “Okay you use 14 of those a day, so I’m sending 28”. “Well, what

if I drop one?” Later, that employee quit and she began working directly with the

pharmacist, who allowed the extra supplies.

Moreover, some caregivers experienced frustration and had scheduling difficulties

with home health agencies. One caregiver reported “no shows” and had to fire the

agency. He was also disappointed with the inflexibility of agency schedulers. As he said,

“They told you when they were going to be there. What you needed had absolutely

nothing to do with it.” His comment reiterates that in home care, although caregivers are

often “on call” all day, they must often arrange their schedules in order to comply with

the business hours of agencies. Another caregiver also met resistance in trying to

schedule agency visits: “When I would call, they would always say, ‘Well you live so far

away.’”

Indeed, geography –the physical separation from the home to the hospital or care

facility–often placed obstacles in coordinating care. Some caregivers told of frenzied trips

to ER’s, sometimes an hour or more away when equipment malfunctioned. One

caregiver said she was trying to check the water level in a g tube and “water just starting

squirting out…when I tried to get the syringe out the whole thing came out with the

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syringe!” With water squirting out, they rushed to the ER and were told, “Didn’t they tell

you that this model is defective – that you’re not supposed to check the water in this kind

anymore?”

Some caregivers also experienced issues coordinating care because of the

delineation between what is legally considered “skilled” and “unskilled” labor. They

realized that even though they were performing labor that is medically considered

“skilled”, agency aides and other workers were not allowed to legally perform the same

work. One caregiver who experienced health problems himself ended up hiring people

who were not nurses to help him because agency aides were not allowed to perform the

skilled procedures he needed, such as administering a feeding tube:

The thing that I would really consider the most complicated about things like

that…comes down more to a legal issue. We had all kinds of different caregivers

that I was trying to hire from agencies and we ended up with our own –private –

we just hired predictable people –because you couldn’t get people from an agency

to do anything. They were either gonna send you an aide who wasn’t allowed to

touch squat…or a nurse who wasn’t gonna stay there, so. And really it

was…frustrating.

This caregiver was able to pay out of pocket for additional help – but his dilemma

shows how skilled caregivers’ needs fall through traditional legal cracks. Aides also face

dilemmas in these situations because they feel pressured to respond to skilled needs,

while they are not legally allowed to do so (See Stone 1999, Stacy 2005).

Conclusion

The caregivers in this study feel a tremendous amount of responsibility and they

are very concerned that they carry out procedures correctly. They negotiate skilled

medical labor over time through their repeated experiences in providing care on a day-to-

day basis. It is clear that evaluation and feedback play important roles in their confidence

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levels, however, their own questions about their lack of nursing credentials, the

importance they place on medical outcomes, and their worry over the health of the care

recipient (or in some cases, their own health) can cause angst. Problems can be hard to

evaluate because caregivers do not have the benefit of professionalism and case

comparison. In general, the more caregivers feel they have doctors or nurses available,

the greater their comfort level, but the separation of home from hospital and the home’s

lack of support and resources place limits on the labor process. Skilled medical labor

takes planning and organization, and as prior scholarship in home care shows, causes

changes to existing space and routines. It also requires periods of intense monitoring and

judgment. Moreover, due to variability and fragmentation in health care delivery,

caregivers must negotiate bureaucracies, payer sources, and institutions to obtain

necessary supplies and resources. This variability greatly impacts labor processes in the

home. In the next chapter I draw on stories from home health nurses and caregivers to

understand how variability in home life, itself –including its relationships, resources, and

divisions of labor –also affects the labor processes enacted there.

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Chapter 7: Integrating Caregiving Labor with Life

As seen in the last chapter, because the home is not a bureaucratic system, it lacks

the support of the hospital and caregivers must often deal with a patchwork system of

suppliers, vendors, pharmacies and agencies. This coordination comes in addition to the

need to execute skilled medical procedures on a timely and accurate basis. Away from

the medical establishment, key players become particularly prominent – a helpful

pharmacist, a caring nurse, a delivery person who drops off supplies on time. According

to the nurses I interviewed, a significant part of their job is helping caregivers navigate

the system and coordinate supplies, services and equipment. Several said their agencies

try to assign a primary nurse to a case, in order to reduce variability. However, due to call

schedules, it is inevitable that families will have different nurses, which, as one nurse

said, “can be stressful for the patient to have to see so many different faces.” Nurses also

said at home, coordination processes often take more time than in a hospital –where

supplies and personnel are readily available. As one nurse told me over her frustration

with scheduling services for a family, “Nothing is fast at home.”

Despite initial anxiety, many caregivers expressed that they were glad to be home

because they did not want their loved ones to be in hospitals or institutions. However,

several said they believe there are times when the hospital is better for the care recipient,

for example when there is serious illness, infection, or vulnerability, or when caregivers

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feel that care recipients need more care, or different care, than they can give them. These

comments highlight the significant differences in hospital and home. As opposed to a

hospital, home life is oriented toward daily activities, is inherently dynamic, and varies

according to family structure, divisions of labor, resources, context and need. These

factors significantly affect the way care work is accomplished. Moreover, home care

happens on families’ “own turf” and this context structures care work for both caregivers

and nurses in important ways. This chapter takes a critical look at how medical labor is

accomplished at home, by taking into consideration the variance in home life and some of

the significant differences in hospital and home.

Home – People and Resources

As Ungerson (1990b) has noted, the home has a smaller division of labor than the

hospital. There are fewer people doing more types of work. A nurse I spoke with, who

has experience in a hospital transitional care program for children with ongoing medical

needs, said that they try to teach at least two caregivers the procedures and that generally

the trainees are women in conjunction with husbands, partners, grandparents or aunts.

Talking about the much smaller division of labor in the home she commented:

At the hospital, we say every IV has to be checked every hour. You know, that’s

…standard of care. So when we go home, that’s a single mom or a single dad.

How are they going to do that at home? People have to sleep. (Laughs.) They

can’t stay awake 24 hours for 7 days a week. You have to recognize that. That’s

why she needs another caregiver. That’s why she needs someone else to help her.

You know?

Indeed, in a home there are fewer people to perform procedures and to work out

problems. Home health nurses generally teach the labor and are not there on an ongoing

basis; and aides are not allowed to perform skilled medical care. As discussed in Chapter

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3, some caregivers were able to obtain government help to fund nurses and aides but

many were not initially aware of the programs, found out about programs by chance, or

experienced difficulty navigating the system. Moreover, even in cases where caregivers

have waiver nurses, or insurance provides the service (which is usually for a limited

amount of time), caregivers still perform a substantial amount of care work. A nurse told

me she once visited a woman who was a caregiver for a man who needed continuous

care. The caregiver had a shift nurse coming but was “blown away” that the nurse could

only stay for several hours. “She was under the impression that she was gonna have a

nurse there 24/7 –which… never happens.” Although a home health aide came in to

perform some of the personal care, the aide could not legally perform the skilled care.

Because she was “very, very nervous” the agency worked to provide some hours of extra

coverage for her first day home.

Because of the intensity, judgment and risk of skilled caregiving, primary

caregivers perform most of the procedures, and the nature of the labor means there are

fewer people they can turn to for help. There is a large difference in asking someone to

baby-sit a child, and take care of a child who has a tracheostomy. Prior caregiving studies

have found that caregivers are reluctant to ask friends and family for help and may

“shield members of their networks from the consequences” of care work (Abel 1991 p.

164). This process seems especially pronounced in skilled care. Primary caregivers

shoulder most tasks and tend to relinquish the skilled labor for very limited amounts of

time, or give up only discrete pieces of the skilled procedures, or other “unskilled” tasks.

Asking friends or other family members to perform some of the procedures may be

difficult because it exceeds normal bounds of reciprocity. Some caregivers indicated that

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they did not want to make friends or other family members responsible for skilled care

because they knew they would be afraid of hurting the care recipient. Caregivers

expressed understanding when family members they cared for deeply did not feel that

they could or should learn the procedures, as one mom told me regarding the care of her

child, “I lost Mom at the trach.” Although some caregivers said they also did not want to

make the siblings or children of care recipients responsible for the care, sometimes, either

in the case of single parents or small families, teenagers or siblings–both boys and girls –

did help out with specific tasks including monitoring and tending, turning the care

recipient in bed, flushing feeding tubes and administering oxygen.

There were some instances when family members or close friends performed

specific procedures for a short time period in order to give the primary caregiver a break.

Close family members –mostly adult daughters, sisters, or sisters-in-law –were mainly

back-up or helped on a limited basis during visits, or when the caregiver was ill or had to

work. This did not mean that men did not assume care in some instances. In one family, a

father-in-law took early retirement and moved in to help so the mother could return to

work and have more time to care for her other children. A few parents said the friends of

their teen-age or young adult children (care recipients) learned some of the procedures so

they could spend time with them or take them on outings. One caregiver actually had an

organized schedule of R.N.s (mainly women) and others (including some men) from her

church that came daily to help with skilled procedures –though this was an unusual

circumstance. Some extended family members such as aunts or uncles learned regular

cystic fibrosis treatments for children, but in the case of IVs, primary caregivers generally

performed all of the labor.

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Social support varies by each particular household. It was clear that some families

had good support systems, especially in terms of help with “unskilled” labor. Several

talked of family, friends, neighbors, and church members who visited, brought food,

baby-sat, mowed grass, helped build ramps, arrived to listen to home health nurse

instruction, provided emotional support, or helped with fund raising activities. Other

caregivers or families had limited social support. In general, caregivers relied on women

–sisters, daughters, sister-in-laws, and friends for advice or emotional care, to help with

errands or to perform back up labor. Some caregivers also relied on family members or

close friends who were professional nurses or caseworkers for advice, to ask questions

about services, or in some cases to show them how to perform some of the labor. It is

clear that women who are nurses or social workers are called on to give practical and

professional help and advice to their friends and family members who are facing a

medical challenge. Thus, gender is evident in caregiving labor because of the position

women have as caregivers in both family life and in professional work situations. In the

“intermediate domain” (Stacey and Davies 1983, cited in Mayall 1993) –the intersection

of public and private worlds – it is generally women who coordinate, give advice and

orchestrate care (See Daniels 1987).

Rearrangement and Negotiation

Available resources, positions in the labor market, and the division of labor –

which may vary considerably based on factors such as family structure and negotiation

processes –all influence who performs caregiving labor. National patterns show that in

general, women are more likely to take responsibility for caregiving (NAC/AARP 2009).

Moreover, women with families are more likely to stay at home or work part time than

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are men. (See Padavic and Reskin 2002: 152). Thus, women who are already raising

families may be more likely to assume care when the need for skilled caregiving arises.

Whether through gender ideologies, which hold that women should be the ones to

provide care, through economic assessment as in the case when husbands or partners earn

higher salaries and benefits, or through family structure, as when single mothers have so

many caregiving duties that they are, at least temporarily, unable to enter the labor

market, women devote more years to caregiving in general, and will be more likely to

perform skilled care when the need arises.

Prior work has also shown that an individualist ideology pervades American

society, when it comes to providing care, and being a full time employee in America

is much less flexible than in many other industrialized countries (See Padavic and Reskin

2002). For example, western European employees generally work fewer hours, have

more vacation, and more paid time off for caregiving (Padavic and Reskin 2002).

American FMLA policy allows for workers to take off for caregiving, however the policy

only covers employers with 50 or more employees, and workers do not receive

compensation (See Padavic and Reskin 2002). Moreover, Padavic and Reskin (2002)

estimate that about half of U.S. workers are not covered by FMLA because they work in

small businesses (p. 169).

Due to scant caregiving policy, prior scholarship has demonstrated that in

America people “cobble together” a path for care by working out individual solutions

when the need arises, for example, they may adjust staring and quitting times, work from

home if possible, or quit jobs (Padavic and Reskin 2002; See also Abel 1991).

Depending on the intensity, severity and duration of the condition or illness, and the

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skilled procedures required, work patterns outside the home may be greatly altered by

caregiving, or people may be prohibited from working outside the home entirely (See

also Baldwin and Glendinning 1983.)

Providing care at home takes time and resources. Economic considerations and

maintaining insurance are of great concern to caregivers and care recipients alike. In the

United States, at least at the time of fieldwork, health care is largely tied to employment.

This can cause quite a bit of strain, as families are trying to maintain health coverage –

which usually requires working outside the home –while still providing care. Families

expressed concern about benefits, retirement, and insurance coverage. Not surprisingly,

caregivers who were in good positions in the labor market, had flexible work schedules

or understanding bosses, were able to work from home or hospital, or were able to take

FMLA or other leave, were better off. Moreover, four families were able to pay out of

pocket to hire caregivers or other helpers on a part time basis.

The caregivers in this study were in families with a wide range of family

structures. Some caregivers were married and taking care of children, others were

married, divorced, separated or single taking care of children or other family members,

and some were married and taking care of spouses. Overall gender patterns are evident in

who performs skilled care, however, as seen in Chapter 3, when skilled work is

necessary, caregivers come up with solutions based upon their unique situations, family

structures, resources, relationships, and prior divisions of labor.

Five women who cared for children were single, (includes divorced, widowed or

separated). In three instances, marriages ended in separation or divorce because the

women did not believe husbands were able to contribute in a meaningful way to their

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caregiving duties. As one woman told me regarding her ex-husband, “Even when he was

there, he didn’t do it. He slept all the time.” Another said her husband, from whom she

was separated, became “jealous” of her care of her adult son. Four of these women did

not work outside the home. Of the five women, one had been laid off and another fired

from her job due to absence from work for caregiving. Moreover, three of these women

reported injuries or medical disabilities which made caregiving as well as working

outside the home more difficult. One single caregiver was able to work full time due to

the flexibility of her employer and her ability to work from home and the hospital on a

computer. She also eventually qualified for waiver services, which allowed a part time

nurse. Indeed, in all five of the cases care recipients eventually received government help

–four received waiver nurses and two were eventually paid for some of their work

through a state program. As noted in chapter 3 however, finding out about programs was

often difficult and application processes were full of snags. Also, while having a part-

time nurse or government assistance helps, it does not replace income lost from full time

employment.

Clearly, single women who are caring for children are especially vulnerable to

economic disadvantage in the labor market (See also Scott 2010). Intense caregiving for

children falls especially hard on women who may have to give up employment outside

the home in order to give care. Moreover, single women may not have partners or other

family members at home who are willing to share the skilled caregiving. Of the five

women, two had boyfriends or ex-husbands who performed some of the care and three

had teenagers who helped.

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Caring for spouses can also be difficult when work patterns and divisions of labor

within the home must change in order to accommodate the caregiving (See also Corbin

and Strauss 1988). Of the six primary caregivers in this study who took care of spouses,

two were men who were retired or semi-retired with a flexible work schedule. Both of

these men had daughters who knew skilled procedures but lived out of state and helped

out on visits. Of the four women who took care of spouses, one was a mother who had

not worked outside the home and whose husband’s job provided insurance, one had a

flexible job and was able to work from home with the use of technology, another (who

also had young children) no longer worked outside the home due to multiple caregiving

duties, and another used FMLA but then was fired because her employer would not allow

her to work part time. Spousal caregivers may shoulder a great deal of the skilled labor as

they care for their partner and they may not have immediate family members available to

help. Women, especially, may have greater susceptibility to caregiver stress due to

multiple caregiving roles or compromised labor market positions.

Three primary caregivers took care of other family members. One was a married

woman who was semi-retired and took care of her brother. One was a daughter who gave

up her job and moved out of state in order to take care of her mother. Although these

women had some family members who helped out with other “unskilled labor” they

performed most all of the skilled care. A single male caregiver who took care of his

nephew took FMLA from his job in order to provide care. He lived alone and performed

almost all of the care except for a very brief period when a female family member who

had been trained in home care came and helped.

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Six married caregivers, who were mothers, either worked part time or stayed at

home full time. An additional two worked full time but had taken off for extended

periods of time (both around five years) after the need for skilled labor arose. These two

women were able to return to work due to waiver programs and family help – one from a

father in law and another from her husband, who began working part time. Three married

women were able to maintain full time jobs due to employer flexibility and/or being able

to perform work from home. In one of these cases, the care recipient eventually qualified

for waiver services.

As noted in Chapter 3, for couples who have children with medical needs, it is

generally women who take the lead role in performing and organizing care, whether they

work outside the home or not. They also more often accompanied care recipients to major

appointments, ordered supplies and organized the labor. Based on my interviews with

nurses, it is generally women who learn to do skilled procedures, although many nurses

commented that men can and do learn the work (See Chapter 4).

This study had several cases of couples caring for children, in which partners or

husbands shared a great deal of the skilled work. Of the three men I interviewed, two

worked full time and one changed from full time to part time work in order to help. Men

who shared skilled work took turns performing procedures, for example giving IVs,

giving injections, and rotating nights in monitoring pumps or for hospital stays. Some

men took off work using vacation days, FMLA, or paternity leave. However, in general,

it was women who took the lead in learning and performing procedures even if they

worked outside the home. They took off more time from work and were more likely to

work part time or stay out of the work force for longer periods.

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There are many different types of work performed in the home that exist prior to,

and in addition to skilled medical procedures. Work in the home includes laundry,

cooking, cleaning and care for children and others. Prior scholarship has shown that

although men’s participation in housework is increasing, when women are in the home,

they usually perform most of this kind of work (See Coltrane 2000). Women generally do

more of the work which has a constant nature such as cooking, cleaning, and laundry,

while men “help out” or do less routine tasks such as taking out trash and doing yard

work (Coltrane 2000). This pattern holds, even when women are employed outside the

home resulting in a “second shift” of women’s labor (Hochschild 1989). Moreover,

women often downplay their work at home (DeVault 1991).

A nurse who has experience in a hospital and has dealt with many families with

children talked about how much work mothers often perform at home, and how this

should be factored into the amount of caregiving they can reasonably be expected to

perform:

I think that’s another thing that people at the institution don’t even think about….

You know, ‘If you can do home care –go do home care.’ I said, “Wait a minute,

she’s already doing this, this, this and this. …You think she can add one more

thing on? When she’s supposed to sleep? ...I want you to go home with this mom

and try to do everything she does for 24 hours.” It’s like, “I can’t do that.” I’m

like, “No kidding, so that’s why she can’t do it, you know?”

Like skilled labor, the performance of unskilled labor is influenced by family

structure, the people available to perform the work, and existing divisions of labor.

In the cases of couples caring for children, decisions were negotiated based on unique

resources, immediate needs, and prior divisions of labor, and varied accordingly. For

example, some married couples had a traditional arrangement where the woman was a

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full time homemaker, or worked part time and had performed virtually all the housework,

while the husband worked outside the home. In one of these cases, the husband began

taking over the shopping and the nighttime cooking while she performed the skilled care.

Over time he began performing the skilled work in order to give her a break and they

were able to obtain a waiver aide to help with some of the personal care. In another case,

the woman continued to take care of the regular housework and also performed all the

skilled care. In yet another case, she continued to work part-time and organized all of the

skilled care, while he rotated the skilled work.

One couple, in which the wife expressed egalitarian values, had planned for the

mother to stay home while the kids were young, but the addition of skilled labor

increased the duties at home. He worked outside the home and had always performed

some of the household duties such as vacuuming and mopping. Now, she does the care

work while he is at his job, she takes care of the organization such as ordering supplies,

and does housework as well. He continues to work outside the home, helps with

vacuuming and mopping, and shares skilled labor by rotating nights with her for being

“on call” –for example, in case a pump goes off. For another couple, she had stayed

home for a time while he worked, but then she returned to work due to her insurance

package, and the fact that it was easier for him to do the lifting of their son, who had

grown considerably. He then took on part time work.

What is clear from analyzing the interview data is that the addition of skilled labor

causes a rethinking of labor and may cause shifts in housework as skilled labor is added

(See also Corbin and Strauss 1988). For example, one caregiver who took care of his wife

had traditionally worked outside the home while she performed housework. Upon

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discovering she was ill, she taught him how to do cooking and cleaning. In another case,

the male caregiver had always performed some of the housework and cooking, and they

had both worked outside the home – so the performance of additional unskilled labor was

not as new to him.

Medical procedures come before other work and other things. As noted, although

men do perform skilled care work, women –especially in caring for children –are most

likely to take the lead. Overall, what is apparent is that due to divisions of labor in homes,

work patterns and available resources, women are more likely to be in situations where

they are giving skilled care and where they are performing or organizing housework.

Further compounding women’s care work is that they are more likely taking

primary responsibility for multiple, sometimes simultaneous caregiving roles –for

example caring for other children, family members with illnesses or disabilities, or the

elderly. Of the twenty-two women I interviewed, nineteen were at the time in multiple

caregiving roles during some part, or all of the time, they performed skilled labor. Sixteen

were caring for other children, and three of these women had more than one child with

disabilities or a chronic illness. Others were either directly caring or organizing care for

their parents or other family members. Although in some cases, women had spouses to

help out with child rearing, they were often worried when their multiple caregiving roles

meant they could not provide the amount of care, or spend the amount time they would

like with other family members or other children. One mother whose child had a severe

brain injury talks about her other son:

One thing…when I look back that I really regret is that I couldn’t have spent more

one-on-one time with him. He’s turned out fabulous. But it’s still –it’s just

like…that one thing that’s always bothered me about it.

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Indeed, with only so much time in the day, immediate medical procedures and

monitoring sometimes must take precedence over other activities or relationships. There

are times when caregivers simply cannot do two things at once or be in two places at one

time. One woman describes her frustration when she could not make it to the nursing

home to oversee her mother’s care while performing a noon IV at home:

I got the air in the line and I’m just…I don’t know what to do. And so I

couldn’t… do it. So they (home health) said… if you need help call ’em. I

thought, ‘Well that’s what they’re for.’ So I called the home health nurse, and she

says, ‘Well I can’t get there right now but I’ll be there as soon as I can.’ And I go,

‘Okay.’ You know. And … what I’m wanting to do is to get this done and go. Get

over to see –sign those papers. Well…it wasn’t gonna work. She didn’t get here

till... it was about one. In the mean time, I called (the nursing home) and told them

to forget it, cause I knew I wasn’t gonna get out of here.

Clearly, multiple caregiving roles can potentially cause more stress for women,

and the nature of skilled labor, which often has timed procedures, makes tending to

multiple needs more difficult. As seen, although caregivers varied in terms of their work

situations and the way they divided labor, overall, women more likely to be in positions

where they assumed care, more likely to give up paid employment, more likely to give

and organize care, and they were more often in roles where they worried about multiple

caregiving. They also more often suffered economic hardships from the labor market –

for example being fired or laid off. Single women are especially vulnerable due to a

reduced ability to share procedures as well as a reduced ability to work outside the home.

The duration of care work also differs depending on the age and health of the care

recipient and the severity of the illness. Some caregivers were able to maintain full time

jobs and take off only during periods of illness, while others due to factors such as the

severity of the condition, employer inflexibility or multiple caregiving roles, were not.

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Five caregivers took care of care recipients at the end of life, and these were intense and

emotional periods. Others took care of those with cognitive or physical problems, which

require on-going assistance. Caregivers who were in this situation worried about the

future of the care recipient’s health, particularly in cases of cognitive impairments when

care recipients may not be able to speak up effectively for themselves. Adrienne takes

care of her adult son who has a severe brain injury and worries, “Who’s gonna take care

of him when I’m gone?” Other caregivers took care of care recipients who were able to

eventually achieve independence with some or all of the procedures or who no longer

needed certain procedures.

Care recipients had wide ranges of independence. One ten year old was able to

take over her insulin management under supervision, and a teen-ager learned how to

place an NG tube over time. Although one caregiver primes the pump for her son’s

feeding tube, he actually hooks himself up to the tubing.

He doesn’t let me touch that, which is fine, because you know I can’t feel

that…it’d be like somebody else changing my earring.

Others learned to take care of their own catheters or colostomies, some learned to

administer some of their own IVs, and others helped organize and direct their care. The

transition to independence may be especially hard for caregivers who are parents. For

example, one caregiver who had an adult child who had sustained a spinal cord injury

talked about how scared he and his wife were the first time the care recipient spent the

night away from home with out them. “A year and a half after his accident he went …

with (his friends) over night…of course we were petrified.”

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There were cases where young adult children finished college, began jobs and

some later moved out on their own –in some cases with the help of government services.

I spoke with six adult care recipients who were available at the time of the caregiver

interviews and wanted to talk to me. (Four were initially cared for by caregivers in the

study and two were not.) They all expressed deep gratitude for what their caregivers had

done. Grant said his mother helped him tremendously after his accident. “ She knew what

she had to do, and she did it. She’s like, ‘I know this is uncomfortable for you…but you

gotta get it done.’” Care recipients said that over time independence became increasingly

important to them. Henry’s sister initially helped care for him, but he showed me the bag

and equipment he uses for his colostomy care and said he is happy to speak to anyone

about the kind of care he has learned to give himself. In talking about some of the

medical procedures, Marcus told me, “I can pretty much take care of myself… If I can do

it, I’m gonna do it.”

Care recipients also expressed some disappointment with payer sources and

maintaining independence. Some were frustrated with the services their insurance

covered. For example, Grant who sustained a spinal cord injury is able to work. He pays

a premium for Medicaid insurance in his state. He was upset that his insurance would no

longer cover rehab for him. While they will pay to “take care of a problem” they will not

pay for preventative services -“they don’t want to help you not get to that problem”. He

has also tried to work with his local YMCA to get more equipment for people in wheel

chairs, but “they always say they can’t afford it.”

Moreover, some care recipients were frustrated in trying to maintain insurance

coverage. According to Tessa:

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I recently got discontinued for disability Medicaid, which is my secondary

insurance, and I had no idea why they cut me off…I mean I have a disability but

they have other requirements besides the fact I’m in a wheel chair. …The reason

why they said that I don’t qualify is cause I can potentially carry a full time job.

And according to Marcus who lived at home with his parents but was mostly

independent in his care:

Disability I get -- 500 bucks a month. After paying a car payment and insurance, I

got a hundred bucks for the month. It’s not gonna work. I mean, I don’t see how

some people live off disability. I don’t know how they can. Simply feeding

yourself…I don’t know…

Marcus had begun interviewing for jobs, and said he needed to seriously consider

if benefits packages would be adequate to meet his needs. His ultimate goal was to work

and maintain independence. According to Mark, a father who eventually went on

disability, and whose wife helps with his medical care, although he performs volunteer

work, he gets frustrated because there are days when he feels like he could work:

You know when you have at least a little bit of a work ethic … you like to do as

some people say, ‘Contributing to society’… It seems like you’re not really

contributing unless you’re earning money to pay taxes…What I don’t like about

the welfare system is they don’t really give you a way out…it’s either all or

nothing…And you know I couldn’t do it all the time… but …there have been

some periods of time when I thought that I could at least work part time.

Thus some care recipients, while working to maintain independence, are often

caught in system negotiation – they must balance payer sources, consider the money and

benefits they could earn in the labor market, and factor in the need to take care of their

health. This can be a challenging navigation when trying to choose the best course of

action among existing alternatives.

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The Context of Home

As seen, in terms of performing medical labor, home is quite different than the

hospital. There are fewer people to perform care at home. There are different family

structures, resources, work situations, and divisions of labor. Care work may affect

caregivers’ ability to work outside the home and it may reorder other unskilled work such

as laundry and housework. Women especially may be susceptible to economic hardships

and feelings of stress due to multiple roles and other caregiving duties. Care work may be

affected by the amount of work taken on by partners or husbands, other family members

who may provide back-up help, the duration of care, and the independence of the care

recipient.

Because home life is variable and dynamic, its context structures labor.

Caregivers told stories, which attest to the dynamic nature of the home. Some care

recipients were young children who, in addition to complying with strict medical

regimens, also had to be taken to school and various functions, as well as helped with

homework. According to Nancy even though there is a lot to do with taking care of her

daughter’s health:

She’s still a kid, and she’s gotta take a bath and she’s gotta do homework and

she’s gotta get all that other stuff done… It takes… all of us to get everything

done that we need to do for her and just for normal, you know, laundry, and life,

and …cleaning the house and whatever.

In addition to keeping up with medical supplies and negotiating payer sources,

caregivers talked about the importance of maintaining activities with other children in the

home, preparing and organizing meals, and trying to attend social activities such as

church or other personal commitments. While it is true that many caregivers said they

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curtailed their own social activities, especially in cases where care recipients were not

mobile, the presence of other children increases activity. According to Barbara who helps

care for her husband as well as her two children, “You’re going about your everyday life

trying to keep it all together.”

Moreover, while family structure was shown to be a significant influence on at-

home care work, nurses also say they see cases where care recipients are home alone –

either the caregiver doesn’t live there, or there is no caregiver available. According to one

nurse, “You see good family support and then you see some people that have no family

support.” Some of these care recipients may live in challenging situations:

We’ve gotten to a house before and maybe somebody lives by themselves,

doesn’t have anybody dependable to come, on a routine, or that would be

compliant with coming every time. And …you just knew when …trying to teach

this guy, he’s not gonna get it…or maybe you’ve gotten there and the home

environment isn’t as clean as it should be for getting therapy, and you just know

that you gotta do it. And …it may involve …you calling the insurance companies

and telling them, if that’s what the situation is. Cause you know, I don’t think in

the hospital they always –they’re not screening that kind of thing for the

appropriateness of people getting IVs at home. It’s getting more and more

commonplace and they just –they just order it and that’s it. And nobody really

knows the situation. You can be surprised to look at someone … and their home

environment might look so much worse than you might think.

The nurses I interviewed talked extensively about the variability they encounter in

homes, and how family dynamics can greatly impact the enactment of skilled medical

labor. People differ in their relationships with each other, and how they respond to

situations, especially in times of stress. While nurses said that in most situations they

have good encounters with families, and are often impressed by how families handle

things, an important part of their job is becoming acclimated to the relationship dynamics

of the particular family:

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You can think that you’re gonna go into a home and everything is…in it’s

place…and you can walk in there and the family dynamics of it is just a tee total

mess…and you can go into a home, that you think you’re walking into a place

where a bomb just exploded and the family will do anything that they need to do

to take care of the patient.

Nurses say that family dynamics are extremely relevant in understanding

caregivers’ orientation toward the labor. One nurse told of a time when a fight broke out

between family members and the patient did not want them to perform the care – so her

agency adjusted their schedule and sent nurses to do the procedures. Another nurse gives

an example of when family dynamics might interfere with home care:

You get involved in family discord…you can have family members fighting

amongst themselves that we get drawn into… And trying to sort that out…you

could have a family member who is the primary caregiver but doesn’t have the

power in the family. They don’t have decision-making capabilities. The decision

maker for whatever reason is difficult, you know, making life difficult for the

caregiver, yet we’re working with the caregiver…. And it could be a real sweet

heart, you know, just trying very hard, but she’s got this other (thing), you know.

So that kind of thing you get involved with. You just walk away from those

situations like, ‘Oh, what do I do next? What do I do now?’

Nurses were also quick to point out that the nature of home life – with multiple

people, interactions, and activities –makes for a relatively non-controlled environment:

You know you’re dealing with animals jumping up and down all over the place.

You’re dealing with kids, and grandkids running…family members coming in and

out of the home, doors slamming, phones ringing. You’ve got all those

environmental issues going on with a lot of these families in trying to teach them.

Because a home is organized around daily life, performing skilled procedures,

such as maintaining a sterile field, can be difficult. According to one nurse who also had

experience as an administrator:

When you’re in a home, you don’t have a sterile environment. I’ve tried to do… a

very a-septic technique taking care of wounds and have a cat jump over my field

that I’ve set up. And the cat liter box is in the same room, you know, that kind of

thing….

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Moreover, in the home, it is family members, not bureaucracies that set standards.

(As we saw in Chapter 6, some were very concerned with cleanliness and came to terms

with it over time.) The nurses I interviewed said that homes vary significantly in terms of

organization and cleanliness. Several said they are careful not to judge others based on

their own standards but try to respect variability and work within the parameters of the

home:

I really worked hard at not letting my standards spill over to theirs. And…it’s a

real skill I think you have to develop when you work in this field… –just be sure

that your standards don’t infringe on theirs.

Another nurse relates:

You have to carry out…normal procedures no matter where you are. You try your

best to get the people to clean up a little but you know…you can’t criticize a

person’s home. You’re a guest in their home.

Nurses said the variability of home life often causes them to improvise:

According to Les:

You can go into nice homes and they’re dirty. You can go into the worst

neighborhoods and they’re clean, you know…you just work with what you have.

You’ve gotta be prepared to make something out of nothing when you’re in home

care. Think about, ‘Okay this hanger will work as an IV hanger…I’ll hang it up

on the ….the backboard of the bed.’… We need normal saline for irrigation, but

we’re out; so let’s boil some water and put some salt in it. You have a formula for

that. I need some acidic acid to irrigate a Foley (catheter). But we’re all out, or it

cost too much for the patient –if they had to pay for it. Well, let’s get some

vinegar and let’s make some.

Sometimes nurses said they witnessed situations in homes where supplies were

not organized or protected. According to one nurse:

…The daughter still lives there and she’s got three kids and you know, there’s no

privacy. And privacy – no one dies of privacy problems – but still you know… his

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(the care recipient’s) equipment’s being played with, or being torn up, or run

around.

In this situation, the nurse said she talked directly to the family about the

importance of maintaining clean supplies. According to another nurse:

The hospital is a much more controlled situation. If a nurse needs a suture kit, or a

bedpan or dressing supplies…she can just go to a nice clean closet and get clean

sterile supplies. And we have sterile dressing supplies, but you know in the home

there’s so many things we can’t control. They may not even have inside water;

they may not have hot water. It could be absolutely a horribly filthy situation.

And another:

You know, kids get into everything. So it’s the home environment and the

hygiene of the equipment and the area in which you’re going to be doing this

work. You know, a catheter is supposed to be sterile. How’s it sterile when you

can’t find anything clean? … So you do your best…and make sure you document

the area, you know so that people coming in later (will understand). ‘Well, why’s

this person got a uti (urinary tract infection)? You’re the only one cathing ’em –

you must not be doing your job.’ Well if you read my notes.

In situations where the home isn’t as clean as nurses would like, they again said

they have to improvise. For example, if there is no hot water, they may boil water on the

stove, or if there is no running water, they use hand sanitizer to wash their hands,

although as one administrator said, “that’s not ideal.” Nurses say they try to educate the

family about germs and the importance of cleanliness, but they also look at the immediate

needs to determine how the home environment affects skilled medical care. For example,

several nurses spoke of being in homes that had cockroaches or other problems. Nurses

may take precautions such as not sitting down or not taking their bag into the house

because they don’t want to spread germs. One agency administrator said nurses

sometimes keep a clean smock in the car so they can change before they go to the next

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home. Nurses also carry hand sanitizer in their bags and have specific procedures to keep

their bags clean. According to Mildred:

We use very good hand sanitizer. Before we do something, if we handle

something from the bag, whatever –you do it again…Constantly; you’re washing

your hands…I always use before and after…that’s protocol.

A nurse administrator explains:

The bag is very specific. There has to be an outer pocket that has their hand

sanitizer in it. Their hands have to be clean before they get into their bag. So

there’s a whole procedure about bag technique.

In some instances, nurses said they bring their own supplies into the home in order to

create clean spaces:

You’re going into places that you know people… ate off of their bedside table. So

you have to go into the kitchen and bring in something to wash that off. Now if

it’s an unsanitary place, you know, with roaches or it’s just dirty, or dog hair

everywhere, then it’s sometimes challenging to find something clean to wash it

off with. You know? As a nurse I always kept in my bag the hand sanitizer but I

also kept a bottle of the antibacterial soap like the soft soap with a roll of paper

towels. Because I know that the antibacterial soap typically isn’t used for

cleaning but if it’s good enough to clean your hands, it’s good enough to clean off

the bedside table…. So if they don’t have that stuff in the home, then I would

utilize my own stock… If they had their own supplies at the house, such as

gloves, I would make sure I brought in a Ziploc baggie so …the gloves would go

in there instead of staying in that box for the simple fact that a dog or a cat could

come up and get on top of that box of gloves. You know? I would create some

type of area for the supplies, so people weren’t fingering ’em all day long.

Using one’s own supplies to clean is not uncommon. A nurse administrator told

me that even though nurses in her agency are not supposed to take in their own supplies,

she later finds out they often do –spending their own money to wash down an area. She

compared this to similar work processes in which teachers spend their own money for

supplies for their classrooms.

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There may also be some circumstances where nurses perform procedures

themselves if they feel it is necessary for patient safety. One nurse tells about an elderly

couple she visited:

She was gonna take care of him at home…and okay, that was fine. Could she do

it? Well I wasn’t sure because of her age and both of them were very frail, you

know, and they had minimal support. But I was sitting … on the chair and all of

sudden I’m looking and I’m seeing movement in the periphery and …the wall is

moving. There are bugs moving up the wall. And so this patient had a wound and

I’m thinking, you know this is not clean... So, I had to take that into consideration.

Could she have done that wound care? She probably could, but would it have

been done well? To the best of her ability, but in that environment –not safe

enough...So instead of her doing it, I did it. You know instead of teaching her, I

took that on.

This nurse said that this couple were Medicare patients and in those days, “it was

not a problem back then” to come and do the work herself. However, today, negotiations

with payer sources are more of a problem. According to one nurse, though, “I think most

of the insurance companies are smart enough to know it’s probably gonna be cheaper to

have us come than maybe (the patient) end up back in the hospital because of it.”

Despite the variability of the home environment, nurses believe that in general,

giving care in a home has tremendous advantages for patients who are more at ease in

their own environment, and are away from other patients (and other germs) in a hospital.

After telling me the story about the “cat jumping over the wound”, the nurse tells me that

home care has advantages and she believes homes may even have a lower infection rate

than the hospital:

We don’t like to send patients to the hospital. Cause we want ’em back in good

shape. So, we try to keep ’em home. Cause sometimes they come back with

infections, and it’s (because) they’re around so many other patients.

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Nurses also believe that patients are more comfortable and speak up more in their

homes. They also say they can see the patient more holistically. According to Les:

You can see the whole person. You’re not looking at a person laying in a bed in

an institution, and that’s all you see… You get to see the whole picture, the whole

…psychosocial atmosphere of the patient.

Several nurses said they believe home care provides a unique window into

understanding the patient’s compliance, and even their overall health. Speaking of other

players in the medical establishment such as hospitals, doctors and insurance companies

one nurse commented, “They don’t see what we see at home.” According to Karen:

You learn so much more about that patient in that home environment than what

you will know in that hospital. You don’t know that they don’t have running

water. You don’t know they don’t have a car. You don’t know that they can’t get

to the doctor. You don’t know that they don’t have food in their cabinets… It’s

the holistic view that influences their overall health, or I feel that it does, and I

think most nursing theorists agree…you don’t know why a diabetic has trouble

until you see their fixed income and their education level. They don’t buy the

right foods because they go to the food bank every month and that’s just not the

foods that are available to them. I mean there’s a lot of different things that go

on, and until you get to know the family, you don’t understand that.

Compliance Issues

Because home is oriented toward relationships, “private” activities and

provisioning (DeVault 1991) and not bureaucratic standards, compliance can be more

difficult. One nurse gives an example of noncompliance when reviewing medications

with a care recipient:

‘It says…on your papers here you’re supposed to take 40 mg of Lasix twice a

day.’ (The patient says,) ‘That makes me go to the bathroom too much, and I’m

only taking it once.’ … ‘It’s not what the doctor wants you to do. It says that you

need to take it twice a day.’… And some people will accept it and some people

won’t.

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Indeed, several caregivers I interviewed worried when care recipients didn’t take

medicine as they should, didn’t eat enough to regain strength, or didn’t do therapies when

they were supposed to. Caregivers said they had to walk a fine line because they did not

want to nag and pressure; yet they also did not want the care recipient to become ill.

According to one caregiver, “You gotta observe…and watch and let them have enough

rope to either…do it right or hang.” And another caregiver talks about trying to let her

son transition to doing his own care, “How much do you watch that they don’t do it?

How sick do you let them get?”

Caregivers' emotional attachment to the care recipient may also complicate

compliance. Adrienne said she felt guilty when she made her son, who has a brain injury,

do therapies that she knew hurt him. “Your heart breaks, you feel guilty cause you’re

making him do it.” Barbara said she tries to remember the importance of compliance in

encouraging her husband to take his medicines:

There’s gonna be some days where that patient may not want to do what they’re

supposed to do because it just seems like it’s too much, and it seems like it’s too

hard to keep on keeping on. And you just have to continually be an

encouragement and there’s a way to do that, and there’s a way not to do it. You

can’t be ‘in your face’, but you also can’t just say, ‘okay you don’t need to take

your meds today, you’ll be okay if you don’t want to.’ You have to… use positive

words…words to encourage that patient to want to take their meds because that is

what’s best for the patient…

Nurses said they realize how important caregivers are in the process of

compliance because, “on a day- to- day basis… we depend on family often to provide the

care”. According to a nurse administrator:

... And the compliance. You know in order for our plan that the nurse has

developed to be successful… there’s a great responsibility on the client to comply

with the plan. Whether it’s something as simple as checking their blood sugar four

times a day before they give their insulin, to…a dressing change, or fixing the

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proper foods. And … we have to have a real partnership with that family. And

that’s totally different than in a … hospital situation.

Nurses also noted that compliance issues could be frustrating to caregivers. In speaking

of caregivers, Mildred said:

They get very frustrated at times…particularly if the patient is an uncooperative

patient with them… ‘Well he’s not doing what I told him to do. He’s not doing

what you told him to do’, you know…’He’ll do what you… tell him to do, but he

won’t do it for me.’

According to nurses, as opposed to a hospital, at home people feel more in charge

of what they can and cannot do: According to a nurse administrator:

And I think that what I always found is that in home care you’re on the patient’s

turf versus them being in the hospital. It’s the…hospital’s rules and regulations

and what the staff say you have to do and that kind of thing. Whereas when you

go into a patient’s home, you’re the visitor, you know? And you can’t demand

and you can’t say, ‘You have to’, you know? It’s patient choice.

According to nurses, care recipients have various rationales for not complying. As

noted, nurses observed cases in which care recipients did not want to take medications

due to side effects. Sandra has seen cases when drugs are expensive, and care recipients

may take less than the number prescribed in order to make them last longer.

Nurses said when patients are noncompliant they make sure to document the fact.

According to Tara, when people refuse to take medication, “you just chart it.” However,

she, as well as other nurses, expressed a great deal of upset when people were continually

noncompliant. According to one nurse:

You can see those patients who…really take everything to heart, and then you’ve

got those who have…had strokes and heart attacks and continue to smoke and…

do those kind of things…and (are) not willing to make the changes. So that’s

…frustrating. But, you know, that’s their choice… I explain to them the risks,

you know? ‘If you continue to smoke –this is what’s creating more

problems.’…Or (I’ll say), ‘Make sure you turn your oxygen off when you’re

smoking…at least make sure’…we had a lady burn her face doing that.

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Nurses, then, may try to convince care recipients to comply, but also realize there

is only so much they can do. Another nurse describes a situation with a care recipient:

We don’t think she was flushing her line…cause it… started… clotting and being

sluggish and we just (said), ‘Are you flushing your line? Are you doing this?

Make sure you do this.’ You just reinforce things but that’s kind of all you can do.

Cause you can’t make ’em do it. When you leave … you’re gone.

In cases where care recipients are repeatedly noncompliant, nurses may have to

discharge them from their services. Moreover, nurses said they also observe situations in

which caregivers are not being compliant with regimens:

They don’t realize how dangerous a situation can be. For instance a

diabetic…you’ve got the caregiver feeding ’em all kinds of fried (foods), sugar,

you know, just whatever.

Nurses use observation and judgment in responding to compliance issues. In cases

where nurses feel that caregivers are not following regimens, they may send the patient

back to the hospital, discontinue services, or if they suspect abuse or neglect, report the

situation to authorities. One nurse said that a caregiver was not performing the wound

care she was supposed to, so she had the patient readmitted to the hospital. Another

suspected a family was not performing proper care for a bed bound care recipient and so

she numbered the supplies. When she returned, they had not been used and she reported

the incident to authorities. According to another nurse:

To me if the safety of my patient –whether it’s an infant or a 102 year old - is

compromised, then I can’t let it sit there.

Making reports to authorities may result in children being taken from the home.

One nurse said she had a child removed from a home because she found mold growing on

his catheters. Many nurses felt frustrated, however, when calls to authorities regarding

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adults did not yield results. If adult care recipients are deemed competent, authorities may

be limited in what they can do. As one nurse said, “If the patient’s competent and chooses

to be in that situation, there’s nothing they can do about it.” One nurse said her agency

uses a contract with their clients to deal with compliance problems:

‘…You agreed to do these things. This has not proven to be the case… You have

responsibilities and we have responsibilities. This is what we can do for you. We

can teach you this. This is what you need to do… if within the next two weeks,

this is not happening we will need to end our services.’ If it turns out we need to

discharge him because they didn’t comply with the contract, then, we notify the

doctor; we give them a list of other home care providers that they can call. If it’s

an abuse situation, we would have already had adult protective services involved,

but we let them know we’re having to discharge, and then it’s in their court. And

that is the hardest situation we have. If it’s an abuse or neglect situation and we

have to walk away, it’s probably the hardest situation we find here. A lot of

planning. A lot of thought. A lot of things go into place to avoid that, but often

times, that’s because in an abuse situation, no matter how bad it is in that home,

that client would rather stay there, than go to a nursing home. And I’m not anti-

nursing home, but …everybody wants to stay at home as long as they can. And as

long as they’ve been deemed competent, and they are their own guardian, they

can make that decision…and that choice. And we have to walk away. Otherwise

we’re part of that neglectful situation. We’re enabling that situation more.

Clearly, home life varies greatly. Although there are many cases of people who

feel comfortable and cared for in their homes, not all homes are safe places. In some

situations, care recipients may even experience neglect or abuse. In Chapter 4, we saw

that nurses identify strongly with the role of teacher, but in these cases, they may also feel

a bit like the police – as outsiders who must report serious issues to the appropriate

authorities.

Immediate Needs

As seen, “home” is a dynamic environment that is shaped by activities,

relationships and pre-established family dynamics. The home environment poses

distractions and obstacles such as compliance issues, but nurses believe it can also

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provide advantages. Nurses believe patients are generally more comfortable, are less

afraid, and speak up more at home. They also believe they can see patients more

holistically.

Nurses, in their unique position as members of the medical establishment, enter

homes where they see the “whole picture” of patient care and must work with care

recipients and caregivers while still heeding bureaucratic mandates and the rules and

regulations of payer sources. In doing so, nurses say they must respect the home lives of

the families they see –including the particular family dynamics, the activities, and the

standards of cleanliness. Nurses called the home “their place”, “their turf” “their

territory” “their environment” and stated, “we’re the guests” “we’re visitors” “we’re

strangers”. In demonstrating this view, one nurse talked about how she always takes the

family’s schedule into consideration when planning visits:

People don’t want you showing up on their doorstep to do their wound care -even

though they know they have to have it done- just willy-nilly whenever… They

want a time frame. They don’t want you to be the cable man…. waiting all day for

this wound care. They can’t shower till they do the wound care, or they have to

shower before the wound care. So they want a time frame.

Nurses maintain that it is patient care that is their top priority in the work that

they do. According to one nurse, “The patient is …my primary focus…and then I work

around those rules and regulations of nursing and the employer.” Nurses must work to

balance their care for the patient with organizational and payer mandates and often walk a

fine line between bureaucracies and the reality of home life. According to one nurse:

It’s a lot different when you’re teaching…IVs skills in a home that maybe has one

lamp, and the person’s hospital bed is in the living room… And maybe, you

know, hygiene, as we know it as nurses, is a whole different culture value. So

it’s…a lot different to try and refocus that to those people, and then, you know,

there you are. And so…it’s stressful for us because we wanna go do it (the IV

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care) daily…we have to look at that payment source and that’s not something as

nurses, we like to look at. That’s just the realism of it all.

In speaking of the limits often placed on the number of times nurses are allowed

to go, Devin related, “I think that the insurance companies should have to assess a

home.”

The nurses I spoke with said they want to keep patients home and healthy because

they believe that is what is best, but sometimes they cannot do so – the patient needs to

be readmitted. This may feel a bit like a defeat. Further complicating the picture, home

health agencies are judged based on readmission rates, which are taken from OASIS data

(See Chapter 3). There is now a website where consumers can compare home health

agencies to see how they are doing in terms of hospital readmission. According to Olivia:

It’s now a huge initiative in home care –Medicare in particular –to keep people

home and out of the hospital. Acute care hospitalization and return to the hospital

readmission…we are measured by that… They don’t want them readmitted

especially within 30 days. That’s costing everybody a lot of money. Now again,

we don’t have a whole lot of control over that in many situations. Sometimes we

do and there are things we can do as an agency and as industry- home care- to

keep people at home. Develop systems and teaching tools and that sort of thing.

But a lot of it is out of our control. They may have been sent home way before

they should have been.

The nurses I interviewed said that even though there is pressure to keep people at

home, they do not hesitate to send them back in if needed, and this is one of the ways

they demonstrated that they prioritized patient care over bureaucracy.

As “visitors” in the home, nurses also said they are careful to draw boundaries

around their work. For example, some of the nurses talked about the importance of not

getting “dragged into family dynamics.” According to one administrator there are certain

boundaries you do not cross – such as taking children into a home, sharing too much

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personal information or problems –such as relationships or finances, or becoming a

power of attorney for a care recipient. Scholarship on nursing aides has shown that they

are often asked to do extra work, and may have a difficult time defining boundaries. This

is compounded by the intimate nature of their work, the fact that they are in homes for

long periods of time and may also lack sufficient power to stand up for themselves (See

for example, Eustis and Fisher 1991).

Nurses were also asked to do extra work, and sometimes they did so if they

judged the need as legitimate. Some said they are upfront in telling patients, “We don’t

clean house; we don’t do dishes.” One nurse had a patient ask her to pick up cigarettes –

which she refused. Another said she may perform extra work but she “tries not to make a

practice of it.” For example she was asked by a spouse of a care recipient to take her

blood pressure and she responded, “I will but I don’t want to do this every visit.” Some

nurses said if they were asked to do extra things, they would draw on bureaucratic

standards for example, “My agency won’t allow me to do that.”

More often, when nurses do perform “extra work” they say it is because they are

responding to the immediate needs they observe. Many expressed great concern for their

patients and their performance of extra work showed their attempts to fill gaps not

recognized by the system. As noted, some nurses perform extra work such as cleaning

areas, and may use their own money to buy cleaning supplies. When I asked one nurse

what she did about the time she spent cleaning a kitchen, she said, “I ate it. Yeah, ate the

time.”

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Many nurses say they may give extra time or “eat the cost” if they feel someone

needs help. A few said that overtime was discouraged by their agencies so they would

“go over on my own time.” According to Rose, if nurses are:

Going from point a to point b and you’re in between there…if you’ve not been

doing good or something, it’s not uncommon for your nurse to walk in your

door… to see if your antibiotic’s helping. (If the nurse waits) and you’re sicker

than a dog…it’s harder to catch up. So it’s much easier to run in somewhere for

five minutes… than …in five days try to fix it. Yeah, a lot of people in home

health volunteer time.

Several nurses also said they call and check on patients on their own time. “ I call

them later in the evening and make sure they’re doing okay.” A few said they give out

their cell phone numbers so patients do not have to go through bureaucratic channels at

agencies to reach them. A few of the nurses also said they visited patients in the hospital

when they were admitted, although this was not a requirement of the agency. One nurse

filled medicine planners on her own time for a patient who didn’t have a caregiver.

Several nurses said they have taken prescriptions to the pharmacy, picked up medicines,

groceries or supplies, or fixed light meals when the care recipient was hungry and needed

help. One nurse “arranged a lady’s furniture one time…to make things a little bit safer.”

Another “threw in laundry” and still another took “tap water in milk jugs” to a home “so

they would have some clean water.”

Another nurse said that when patients have a hard time getting supplies she

sometimes buys them herself, depending on the circumstance:

I bought a pillbox recently. I bought a jar of Vaseline for somebody…or an

ostomy belt, something we don’t carry …that they don’t have. If I knew

somebody could afford it and they wanted to, I’d let ’em reimburse me. But if I

don’t think they (can), I just don’t worry about it. I didn’t ask, I didn’t tell ’em I

was gonna do it ahead of time. And so if I do something like that, where I’m just

doing it, I wouldn’t want them to pay me if they didn’t know I was gonna go do it.

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I have gone before and said, ‘Well I’ll go to the store and get this. I’ll go.’ (And

they’ll say), ‘You get it and then you let us pay it.’ And…sometimes I have…

I had a lady…and she worked part time…–no insurance, no money coming in, no

nothing. And… she had run out of her pills…and we were only gonna see her a

couple of more weeks, and then hopefully…she should be back to work. And …

so I just gave her twenty dollars and she went and got her pills…I felt like she

really was gonna go get her pills…I just have to look at it that I’m… in good

faith… have to give somebody something. If they didn’t do it, I have to not worry

about it…Well, she did –she went and got it; she came back. The next day she

said, ‘I got my pills.’ I could tell by her blood pressure she had. (Laughs.)

When nurses “volunteer” time, money and resources they are attempting to meet

needs they observe which are not recognized by the system. They do this “extra work” in

response to needs they deem legitimate – in order to keep patients safe and well.

Recognition of their actions is crucial in understanding issues which otherwise would not

rise to the level of policy.

Conclusion:

The accomplishment of skilled labor in the home is a multi faceted and dynamic

process. While bureaucracies have standards and keep track of budgets, skilled labor in

the home is not nationally analyzed or accounted for, rather it is negotiated by families

with varying family structures, resources, and divisions of labor. At home, there are

fewer people to provide care and the skilled nature of the labor means that primary

caregivers often take on the majority of the procedures.

As prior scholarship has shown, the responsibility for carework is individualized

in the United States and people are often left to come up with their own solutions. The

performance of skilled labor depends on family structure, resources, work situations, and,

prior divisions of labor. Those with good positions, flexible employment and benefits

such as FMLA are better off. It is women who are likely to take lead roles in providing

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care and who may suffer economic hardships such as unemployment. Women are also

more likely to be in multiple caregiving roles. Caregiving falls especially hard on single

women who have more responsibility at home, and also are disadvantaged in the labor

market. The duration of caregiving also varies by such factors as the age and health of the

care recipient. Some care recipients may be able to assume some or all of the care, while

others cannot. Adult care recipients often worry about balancing payer sources,

employment, and maintaining their health.

Interviews with nurses also attest to the varying context of the home environment

and how it structures the labor process. Nurses observe varying family dynamics, and

different levels of organization and cleanliness. They say they must often improvise and

use the resources that are available to them. They also say they try not to impose their

own standards on families, but look to see how the environment affects care. They may

employ strategies such as educating the family on cleanliness, maintaining one clean area

for supplies or procedures, or using specific protocols including bag technique.

Compliance issues are also more pronounced in the home because care recipients are on

their “own turf” and do not feel they have to take directives if they do not want to.

Moreover, caregivers may experience difficulties in encouraging care recipient

compliance. Despite the challenges and obstacles of the home, nurses believe most

patients are better off there – away from hospital germs and in their own environment

where they are more comfortable. They also believe they can see patients more

holistically and can achieve greater understanding of their overall health. Clearly,

however, nurses also observe cases when patients are not in safe homes, and may even

experience neglect or abuse.

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Nurses say they respect the privacy of the home and consider themselves

“visitors” or “guests”. Although they are accountable to bureaucratic standards, they

often respond to the immediate needs they see and may perform “extra work”, “eat time”,

or use their own money for supplies. The variability in homes means nurses sometimes

scramble to meet needs. In this way they fill gaps not recognized by the system. Policies,

which promote a “one size fits all scenario”, do not reflect the variances observed here.

The nurses I interviewed, as well as the caregivers, say their main priority is the health

and well being of the care recipient. This point is further explored in Chapter 8 where I

investigate how caregivers conceive of the labor they perform.

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Chapter 8: “You Do What You Gotta Do”: Identity and Emotion in Skilled Caregiving

Introduction

Caregiving, of any sort, is an emotional experience. Caregivers who are

performing skilled medical labor are often dealing with life changing events –both in

their own lives and the lives of those they love. Skilled medical labor can cause intense

changes in routines, work schedules, and relationships (See also Corbin and Strauss

1988). Caregivers’ experiences reflect a process of negotiating and integrating care into

their daily lives. Moreover, care recipients must often deal with the effects of illness on

their identities, and many family members are active in helping them manage these

processes (Corbin and Strauss 1988).

The caregivers I spoke with experienced challenges and anxiety in learning new

skills and incorporating them into home life, and physical and emotional processes were

intricately woven in their minds. When speaking of their labor, they seamlessly integrated

their feelings of love and care with the labor processes they enacted. They shared with me

their notes, their medicine charts, humorous cartoons used to cope, time lines, diaries, and

favorite pictures of their loved ones. This chapter looks more closely at caregivers’

feelings about the labor and the effect of the labor on caregivers’ identities.

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Research on Identity

Workplace scholars have often grappled with identity in the workplace. As seen

in Chapter 4, the concept of emotional labor has been used to understand identity

processes for paid workers in service and care work. Hochschild’s (1983) concept of

emotional labor, fashioned as exploitative if workers engaged in “deep acting” to change

their feelings in order to comply with company guidelines, has been critiqued and

broadened by a number of scholars who have found that workers’ coping mechanisms,

the work environment itself and the positive rewards of their jobs mean that workers who

perform emotional labor do not always suffer a loss of self in the course of labor

processes (Tolich 1993, Bolton and Boyd 2003, Lopez 2006).

Workplace scholars have not generally examined “emotion work” – Hochschild’s

term for the emotional labor that is performed at home. I argue, though that such an

examination is necessary in order to understand the processes by which unpaid caregivers

take on skilled labor – labor, which would be compensated if performed by credentialed

professionals in hospitals or even home health settings. Understanding the process of

emotion work illuminates caregiver identity and problemtizes the assumption of

alienation implicit in structural views of the labor process. While labor scholars have

argued that workers’ identities are formed from work relations (Burawoy 1979) or at

least, are only tempered by pre-existing identities (Sherman 2007), caregivers’ identities

are already deeply formed within the context of private relationships.

The effect that caregiving has on the identity of caregivers is a complex issue.

Medical sociologists have examined caregiver identity within the context of Bury’s

(1982) “biographical disruption”. For example, Chamberlayne and King (1997) cite

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Denzin’s (1989: 23) work in which caregiving is seen as a “turning point in the

biography, which significantly shapes the carer’s life” (Chamberlayne and King 1997:

605). In their study of caregivers of the chronically ill in East and West Germany,

Chamberlayne and King (1997) present four in-depth illustrative cases of the fifty

interviews they conducted using “biographical interpretive methods”. They draw on

Habermas’ concept of the lifeworld (also see Crossley 1996) and discuss how caregiving

involves “subjective and practical biographical adjustment in both ‘inner’ and ‘outer’

lives”. Here “inner” lives refers to “personal, emotional responses to the disability, to the

practical routines, to the person needing care, together with familial and friendship roles

and relationships” (1997:605). “Outer lives” refers to “the exterior world of

opportunities, choices and constraints afforded by welfare provision and tradition, wider

social attitudes and discourse concerning welfare and disability, reactions from friends

and ‘the public’” (1997: 605). The authors note that identity is a product of both “inner”

and “outer” worlds, how people are able to adapt and change, and how social systems

affect caregivers’ lives (1997: 618). Some caregivers are able to incorporate caregiving of

the chronically ill into their pre-existing identities as well as their expectations for the

future while others experience dramatic changes either in their “inner” selves or in their

relationships with the “outer” world (Chamberlayne and King 1997). Despite challenges

along all these dimensions, and varying effects on identity, the authors note that in only

one of the four illustrative cases does the caregiver experience a “serious crisis, with little

independent sense of identity and/or perspectives for the future” (1997: 618). In the other

three, however, caregivers, still face “anguish in coming to terms with the disability” and

“major unresolved issues remain, for themselves, for those they care for…” (1997: 618).

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I cite these study findings because they reiterate that caregivers have different

emotional responses, coping mechanisms, resources and opportunities. Further,

caregivers are dealing with care recipients who have various illnesses, who are

differentially related to them, and who have different senses of their own identity. In

regards to care recipients, Lawton (2003) points out that it is important to look at the

timing of the illness, the particular setting, and the “whole biography” of the individual

who is experiencing the illness in order to understand how they construct their

experiences. In recapping studies on care recipient identity, Lawton points out that care

recipients, while in danger of experiencing “biographical disruptions” which may inhibit

their sense of hope for a normal future (Bury 1982), or a “loss of self” (Charmaz 1983)

may also eventually be able to put their illness within a context from which they draw

meaning (Williams 1984). These variances have profound effects on care recipients’

identity and relationships with caregivers and influence caregivers’ own sense of identity.

While an extensive biographical analysis of care recipients’ as well as caregivers’

identities is beyond the scope of my analysis, what I aim to do in this chapter is to gain a

greater understanding of how the taking on of skilled labor may affect caregivers’

identities through exploring the emotion work they perform. As we will see, the

relationship between caregivers and care receivers is central to this process.

Emotion Work as “Feeling” and “Doing”

According to Hochschild (1983, 2003), how we think we should feel is dictated

by “feeling rules” and we may “offend against them” for example when “we grieve too

much or too little” (p64). According to Hochschild, in private settings, “the deeper the

bond, the more emotion work, and the more unconscious we are of it” (Hochschild 1983:

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68). People often work hard on their emotions and Hochschild gives numerous examples

when people use “deep acting” to make themselves feel in ways they think they should

feel. “We must dwell on what we want to feel and on what we must do to induce the

feeling.” (2003: 47). People may “lie to themselves” (p. 46) in order to try to change

feelings. These matters need “constant attention, continual question, and testing” (p42)

and are done for the “pursuit of fulfillment…in everyday life” (p55).

Feminist and family scholars have begun to analyze Hochschild’s (1883: 2003)

concept of “emotion work” in the home. Mac Rae (1998) found that when caregivers of

Alzheimer’s patients violated “feeling rules” and couldn’t manage their emotions, they

experienced negative impacts on their sense of self. They felt badly when they did not

feel that they loved the care recipient in the way they should (p144). These caregivers

were dealing with care recipients who often had changed personalities and some

caregivers felt guilty about being resentful (Mac Rae 1998). Mac Rae’s work

demonstrates the “deep acting” that Hochschild associates with emotion work in the

private sphere and emotional labor in the public sphere (paid work). Those who engage in

this type of self-process are in danger of being alienated from their true feelings and

suffering a loss of self.

More broadly, “emotion work” in the home has been analyzed not just as a

management of “feeling rules” – where an individual works on his or her emotions and

feels guilty if they do not feel the way they think they should –but to quote James, (1989)

as a “social process” which involves “dealing with other people’s feelings” (p.21). (James

refers to emotion work done in both the home and at paid jobs as “emotional labor”, but I

will use Hochschild’s term “emotion work” in this chapter.) According to James (1989):

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Emotional labour is hard work and can be sorrowful and difficult. It demands the

labourer gives personal attention which means they must give something of

themselves, not just a formulaic response (p. 19).

James embeds her definition in the social feminist view that emotion work is

“hard work” that is performed for others at home and at work, is often invisible, and aids

in social reproduction. James reiterates that emotion work is active. It involves

“juggling”, responding, and engaging in active listening (1989: 26-27). Similarly, Daniels

(1987) referring to Hochschild’s (1979) “positive aspects of ‘emotion work’” gives

examples of activities which emphasize taking care of the emotional well being of others,

for example, “attending carefully to how a setting affects others in it – through taking the

role of the other and feeling some of the same feelings” and “checking over the behavior

of all respondents in an interaction – just as good hostesses do” (1987: 409). Both Daniels

and James maintain that emotion work is often invisible and that women fail to see it as

work.

In a similar vein, Erickson (1993; 2005), drawing on Hochschild (1979) and

Thoits (1996) also operationalizes emotion work as actively managing others’ feelings.

In referring to Hochschild, Erickson (1993) says:

Emotion work refers to the management of one’s feelings to create an observable

facial and bodily display. Within a personal or familial context, this work tends to

involve the enhancement of others’ emotional well-being and the provision of

emotional support (1993: 888).

In her 1993 study, Erickson finds that husbands’ emotion work, such as showing

support or sharing feelings, had a strong effect on wives’ marital well-being. Through

looking at separate processes for men and women, she finds that when both women and

men construct their identities along stereotypical female traits– such as being emotional

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and being aware of others’ feelings, they do more emotion work (Erickson 2005).

However, she also finds that when women construct their identity along the lines of

stereotypically traditional masculine traits such as being independent and active, they,

too, perform more emotion work (Erickson 2005). These findings lead Erickson to see

emotion work as an active and agentic part of women’s construction of gender identity

(Erickson 2005). According to Erickson, gender construction theory has implications in

that the emotion work women do is not perceived as alienating, but rather shows their

concern for family members, and is used to construct their gender identity as a positive

part of selfhood (2005: 340)

As seen, emotion work in the home, then, has been constructed to mean working

on one’s own feelings as well as actively managing the feelings of others (Hochschild

1983; James 1989; Daniels 1987; Erickson 1993, 2005). This notion of emotion work as

active also has support within the sociology of work. As seen in the prior chapter, various

scholars have made the case that workers do not always experience emotional labor in

negative, passive ways that cause alienation (Bolton 2000, 2001). Emotional labor in the

workplace as well as at home takes negotiation, action, interaction and giving time to

others (James 1989). In both the public (paid work) and private spheres, emotional labor,

or emotion work, respectively, can be seen as both “feeling” and “doing” (See Erickson

2011).

Emotion Work in Skilled Caregiving

Emotion work is an unquestionable component of caregiving. The caregivers I

interviewed clearly engaged in emotion work in managing their own emotions as well as

those of care receivers. Caregivers talked about trying to cheer up or give emotional

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support to care recipients and took active measures to express concern when they knew

care recipients were in pain, were afraid, or were anxious:

You don’t know from one day to the next… how he’s gonna get up (in the

morning)…When I walk in there, (I say) ‘Hi handsome,’ you know?… I mean

he’s always happy but then you could see that there’s pain. You can see the pain

in the eyes.

In the course of encouraging and interacting with care recipients, a few caregivers

also spoke about the need to stay positive, even if they were not feeling well themselves.

In talking about how she gives support to her husband one caregiver said it is important

to:

…just try to be encouraging and try not to express your anxieties, if you’re having

a bad day as a caregiver. Don’t necessarily say words like, “I wish I didn’t sign up

for this,” you know? I’ve never said that and I would never say that, but some

people do and I think that’s wrong because I think that hurts the patient’s

emotional stability and it also hurts the relationship.

Caregivers talked about the need to closely watch, listen and observe. Some

described intense periods of stress when they reassured care recipients or calmed them

down during panic attacks. Emotional exchange, however, is interactive and caregivers

experienced a flood of emotions – not only anxiety, but also warmth and humor in their

communications with care recipients. A husband talked about how his wife became

unable to communicate and he listened to her through the use of a transparent alphabet. In

trying to tell him that she felt “claustrophobic” she misspelled the word and it became a

joke for them:

When she passed away, about the only thing she could really move on her own

was her facial muscles. We communicated with a transparent alphabet…you’d

hold it up and she would look at the letter, and of course I’m seeing the reverse

and you just watch her eyes spell out what she wanted to spell …It became kind

of a joke because…she would spell it ‘klos’. And the first time it took forever to

figure out what she was talking about…. You get to where you start to spell a

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word and half way through you know what the word is. You say it, she’d blink

her eyes and go on to the next word. ‘What the hell starts with klos?’ And finally

when I realized what she was saying it became a joke so every time that’s what

she was trying to say she would spell it ‘klos’.

Some caregivers also described special events they planned so that care receivers

could share family time. For example, two mothers who had children with mobility issues

talked about birthday or holiday parties they planned at home for extended family

members. According to one of them:

We have the 24-hour Christmas party, because it’s become difficult. Unless a

house is wheel chair accessible, we can’t take him places. And so we decided

probably I think about 4 years ago. It was always on Christmas Eve, my side of

the family got together; on Christmas day …we got together with his side. And it

just got impossible, but we didn’t want to be separated, so we said, ‘everybody

can come here.’ So I now do both Christmas Eve dinner and then Christmas Day

dinner… And it’s just 24 hours of us…cooking and cleaning and picking up and

that’s that –but it’s important…You know, there are times when we’re like, ‘No,

we all need to be together’ and that’s one of the one’s where we do that.

As this quote demonstrates, genuine feelings of caring for care recipients were

prominent among the caregivers I interviewed. It is important to note, however that this

may not be the case in other caregiver/care receiver relationships, particularly in cases of

prior abuse or dysfunction. Noddings (1995) makes the point that we cannot assume what

“people mean to each other” based only on the formal relationship (p. 154). It is true that

some caregivers may feel coerced or may resent the assumption that they will care for

family members (See Oliver 1983; Ungerson 1987). Although the nurses I interviewed

saw this dynamic, and would sometimes monitor care more closely, there is still much to

learn about these situations as well as those in which caregivers do care but are unable to

carry out the physical work.

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A greater issue for many of the caregivers I interviewed was the disjuncture

between the general cultural “feeling rules”, which guide the expectations of individuals

as parents, children, spouses and loved ones, and the reality of the situation at hand which

they believed required them to become skilled caregivers. In this context, our culture’s

“feeling rules” appear very general. We “take care of” each other when we are sick. We

want to “be a good mother, husband, spouse, and child”. But cultural “feeling rules”

don’t capture the enormity and complexity of what needs to be done in skilled work.

Caregivers were, to borrow from Smith (1987), on a “fault line” between the expectations

of what they thought their lives and the lives of their loved ones would be like, and what

they were.

The medical condition of the care recipient, and the skilled medical labor needed,

caused them to assess –sometimes with wonder –the work that was necessary, and their

part in it. Although this evaluation process varied by individual caregiver (see for

example the case of Paul later in the chapter) many initially questioned what their role in

the labor process would or should be. One caregiver talked about her hesitation of going

home from the hospital:

They were so sweet –those residents –I loved ’em. But, I said, ‘Are you sure he’s

well enough to go home?’ And, you know, of course I was hoping that he would

say, ‘Well maybe I’d better do a double take on this.’

Caregivers’ revelations of what the labor process would entail were often quite

emotional and related to the situation: “It was just like one day everything was great and

then the next day you’re just faced with things that you never imagined”; the medical

procedure at hand: “…it’s just something that you don’t get over real fast…it’s just

something you never thought you’d see…. it was an emotional time, I’ll tell you that.”;

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the scope of the labor: “Oh my gosh, how are we ever going to do this?”; the caregiver’s

worry about his or her own competence: “Am I gonna do this right?”; and the identity of

the caregiver: “This wasn’t my personality at all. I really had to step out.” Several

caregivers also questioned their lack of credentials: “I don’t have a nursing degree. What

do I do?”.

In Hochschild’s work, as well as Mac Rae’s, those who performed “deep acting”

had feelings that were at odds with cultural norms. They believed that they “shouldn’t

feel” resentment for example. The caregivers I interviewed indeed had feelings that ran

counter to cultural norms, but in different ways. While a few of the caregivers did express

guilt about feelings they had, as one caregiver related –“I think it’s a burden, I mean, I

hate to say that but it’s always on my mind.”– for the most part caregivers did not so

much express feelings of guilt about their feelings regarding the labor, as they worried

about the potential of doing something wrong, or not doing enough.

As seen in prior chapters, caregivers had feelings of worry and anxiety. They

were worried they would hurt the care recipient, they worried about their own

competencies in carrying out the labor, and they worried about what the future would

hold for the care recipient. Certainly, in performing skilled labor, caregivers had to

manage their own feelings and insecurities and in doing so, often pushed back their own

emotions. “I just stepped up” or “I sucked it up and did it” were typical responses. Some

expressed that they initially wished that a qualified person could do the labor. According

to one caregiver:

I was so afraid of doing something wrong, cause I had, you know, just had that

fear of the PICC line and it being in that artery and it just –I remember wishing

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that I had been approved for the waiver and then a nurse would be doing that and

I wouldn’t be.

Another caregiver says about her first day home:

It was incredibly overwhelming. It was like I keep saying I wouldn’t wish this on

my worst enemy. I wouldn’t wish it on anybody. If I could have brought one of

the nurses home…with me, I would have. But, I did what I had to do.

Complicating the picture for caregivers was the lack of alternatives to taking the

labor home. They knew that if the care recipients didn’t come home, they would face

longer time in hospitals, rehabs, or nursing homes. While caregivers often experienced

ambigious emotions, for example that they were tired when doing labor at home, that the

hospital afforded more back-up help and access to vital tests, that it was hard to find

people who could help at home, and that compliance was better in the hospital, there

were also strong feelings of wanting the care recipient to come home.

One caregiver expressed a fear of germs in the hospital: “There were too many

germs in the hospital, and this (home) is the place she needed to be.” Several caregivers

said that they believed their loved ones were physically or emotionally better off at home.

One wife expressed that she and her husband both prefer he be at home when possible

because of his important role in their children’s lives:

We’re kind of in our phase of life where as our children grow and they get older,

we want to be at home. Mark wants to be at home, he doesn’t want to be inpatient.

If he can stay out of the hospital and get what he needs with home care, we’re

gonna do it.

One mother whose child had been hospitalized several times for IV antibiotics

also had other children at home to take care of, and the family had busy work and school

schedules. According to her, at least at home you can “have some kind of life.” She, as

well as a few other caregivers, were grateful that the doctors and pediatric staff allowed

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her to have some flexibility in deciding if her child should stay in the hospital or go

home. This kind of freedom was very important to her and contrasted with another parent

in a similar situation who felt pushed out when her child was on IVs. She perceived that

this was mainly due to insurance limitations:

They just talked more…early on about us going home…you know, ‘I think maybe

you can go home,’ and ‘I think maybe you can do the IVs at home.’ I mean it just

made me feel like –because before they would never rush you out. They would

have let you stay in there, seemed like, forever. But since Medicaid has really

cracked down on what they’ll pay, what they won’t pay, and how far in advance

you can get your prescriptions filled, you know, I think it’s more them than it is

the doctors.

Caregivers with loved ones who faced long-term or even permanent

institutionalization spoke out even more strongly against it. One caregiver said her

husband had already been in the hospital for so long, she did not want him to have to

spend several more weeks in rehab to have his wound care and IV antibiotics. Although

she was afraid, she said she decided to take on the labor: The following quote shows the

conflicting emotions she had:

You have all kinds of feelings going on there, you know, you’re afraid that you’re

gonna hurt him or you’re gonna do something to put him back into the hospital, or

kill him…It’s just, I don’t know, you’re kind of up and down and all over the

place you know? I mean, I didn’t like it one bit but, it had to be done. And I just

sucked it up and did it. That’s what you have to do… I didn’t have a choice unless

I put him in a nursing home.’

Another caregiver who had an adult child who had sustained a spinal cord injury,

said the thought of him being in a long-term care situation “never crossed my mind.” And

according to a father:

No. He would have never survived if he were in a rehabilitation place. Cause of

his emotions and things that he wants to do…he would have gone into so much of

a depression.

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According to another caregiver whose son had suffered a brain injury and medical

complications at a young age:

In the very, very beginning when he was still in the hospital, (for) some reason I

thought that he should probably go to a nursing home for a little bit and I’m sure

somebody must have planted that seed in my head. And that’s when the

neurologist stepped in and said, ‘No I’ve seen how you guys are with him and

you’re touching him and you’re talking to him and you’re bugging him all the

time. He needs to be home... that’s where he’s gonna recover the best.’ And

…you know, the one thing I’ve learned from talking to other families throughout

these years is you know, you can never say never. You don’t know what your

situation is going to be like. And even though I say now I never want him to be in

a nursing home or anything like that, things can change. I might have to change

that one day. But right now just absolutely not. I’d be …there the whole time.

As seen, despite feelings of ambiguity and uncertainty, caregivers said they took

on the labor out of concern for their loved ones. Given their alternatives, they fought

initial feelings of fears and focused on the needs of care recipients. They “did what they

had to do”. While this phrase was used to echo the constraints in the labor process, it was

also used to reflect the strong feelings toward care receivers.

Relationship and “Doing What You Gotta Do”

Glenn (2000) notes that caregiving is ultimately rooted in the relationship

between caregiver and care receiver (See also Abel 1991) and is an interdependent

process, in which both parties have power. While relationships vary, and some caregivers

may not feel attachments or caring toward caring recipients, for the skilled caregivers I

interviewed, this did not appear to be the case, and the enactment of the labor was a

fulfillment of their self-evaluations of what it means to have a “good relationship” with

the person who needs them. Caring is framed as “doing” and caregivers see their labor as

part of the relationship.

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It should be noted that prior work has suggested that caregivers may seek “outside

help” in order to have more emotional detachment (Abel 1991: 113) but this did not

appear to be an emotional mechanism used by the caregivers I interviewed. In cases

where families eventually qualified for medical waivers, they had already experienced

long periods of performing the procedures and/or were still performing a great many of

them. Considering the intricate nature of the labor, it’s importance to life, and caregivers’

part in it, it is more accurate to say that instead of “detachment”, caregivers enacted

“reattachment” – attaching to care recipients in new ways, with the relationship between

them the central feature and the driving force of their labor.

The fact that caregivers respond to the immediate needs they observe and center

their actions on their relationship with the care recipient means that they do not see the

labor as merely a societal obligation, or an enactment of cultural “feeling rules”. This

quote from a single mother shows her strong desire to take care of her adult daughter,

even against the advice of medical professionals:

She came home with me. They wanted me to put her in a nursing home and I

refused. I said, ‘No, absolutely not.’ I wouldn’t have put any of my kids in a

nursing home, it didn’t matter how they were… there was a big possibility that

she could have been –had brain injury –but she didn’t. And even if she would

have, she would have still came home with me…But no, I just, I brought her

home with me, and was up in the middle of the night just like she was a baby and

took care of her, and took care of her during the day, and did what I had to do.

The caregivers I interviewed saw care receivers as “whole people” people to

whom they afforded dignity and love (See also Kittay 1999; Abel 1991). Caregivers

incorporated skilled caregiving into their existing identities as mother, father, spouse,

child. They wanted care recipients to be comfortable, whole, normal, and healthy.

Foremost then, it is their relationship from which they draw in explaining their labor. In

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this way they receive positive contributions to their own self-identities through

preserving the dignity, the “normality”, or the well being of those they cared for. Doing

the labor helps them feel they are doing everything they can. There is no ambiguity here.

“I did what I had to do.”

When I asked Marcie if doing home care affected the way she feels about herself,

her answer reflected her strong feelings for her children and her view of skilled care as a

part of that relationship:

I think maybe (it’s) made me feel important. You know… I mean my whole life

has been the kids…so I think (about)…what I can do to help them…I mean that

kind of feels like bragging if I say…, ‘Oh it makes me feel great and feel

important.’ I…don’t feel that way a whole lot. I just, I kind of do what I can do…I

don’t really view it as a duty or a chore… I just do what I have to do. Yeah…I

mean, no it’s not something I would pick. You know, I wouldn’t sit down (and

think I’d)…want to do this. But if I can do it and it helps them, and they need it,

then I do it.

A father describes his feelings:

As soon as I looked at it, said, you know -… if I don’t do this –he’s not gonna

make it –well there’s no question. It’s kind of like getting up at 2am for that first

bottle-feeding when they’re three days old.

According to Beverly:

And you know when it comes to a health condition of a child… you do whatever

you have to do and there are no limits of what I would try if that’s what I had to

do to benefit him.

Sidney relates:

People will say well, ‘You’re so wonderful to do this that and the other,’ and it’s

like, ‘What are you talking about?’ This is just what do you do. You just assume

that if the shoe were on the other foot, that she would do the same thing for

me….That’s just what you do.

When Paul talked about doing the wound care and other procedures necessary for his

wife he said:

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You make a decision. Is this my life or is my life still global? And if you really

think about –if you can do these things –she told me that, ‘I’d rather you do these

things than anyone else.’

Paul’s case demonstrates how caregivers who perform skilled care are able to

somehow mentally mesh the necessary procedures with their concern for the care

recipient. When I asked him how he felt the first time he realized what he would have to

do, he spoke simultaneously about his love for his wife and the details of the labor

process he enacted:

I gotta do it…There was no question in my mind, that, ‘Well why do I have to do

it? Why can’t you have someone come and do it?’, you know. Well no…she’s the

light of my life. And then there was…the two drains and then there was a hole in

her chest here. And that is because the incision had not knitted correctly up here.

And so it started out as three times a day. The doctor showed me how to do it. I

had to pull out the packing that was in there, and then I went and took some sterile

gauze and cut a strip about that wide and that long… And then I took a long q-tip,

a swab, and I had to poke it in there until it was packed completely. And then

cover it with… a piece of gauze taped over the top and then put a 4 by 4

(bandage) on top of that.

As seen, skilled caregivers are deeply involved in both “feeling” and “doing”. As

this caregiver said, “I was very focused on her.” Caregivers spoke with intensity about

how they used technology and skilled procedures to feed, bandage, give life saving

medications, and suction and provide oxygen to care recipients so they could breathe.

Labor is thus framed in terms of the immediate needs for loved ones, which demand an

active response. According to a caregiver who gives TPN nutrition:

I have to do it. I have to do his TPN in an a-septic manner or he will get sick. I

have to perform at a certain level or he will not… he can’t function. So, I don’t

know if that’s an emotion, but it’s a driving force. I can’t just blow it off. It’s not

something –like my other child’s supposed to do these exercises for a dance

class… I don’t ever make her do it, cause I forget. Cause it’s not life and death for

her, you know? Whereas for him, I can’t blow off his three o’clock meds because

… I can’t do it. Or I can’t say, ‘I don’t’ feel like giving him a bolus right now.’

Well, I have to. Just like feeding my daughter, I have to feed her, you know?

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Caregivers often discussed their realization when they truly understood what

could happen if procedures weren’t done correctly or on time:

I didn’t want really want to have to… force him to go to the bathroom…

But then they told me that if he didn’t –wasn’t on a regular cathing schedule –he

would end up on kidney dialysis, and all kinds of other things. And we figured out

how to do it real quick.

Another caregiver conveys the same urgency:

It’s just what you do… It’s not like you got a choice. It’s like, ‘Well can I go play

golf or can I feed (my wife)?

In a pragmatic response to immediate needs, in one way or another, despite those

who have initial anxiety or questioning, despite disjuncture between vague cultural

“feeling rules” and the realities they observe, caregivers’ sense of needing to do trumps

their anxiety over learning and executing the new skills. In contrast to those who “work

on their feelings” to make themselves feel like they should, skilled labor caregivers

manage their feelings and work up to doing. Consequently, they are not left to stew about

an appropriate response. “I should do this or that.” They have medical actors telling them

what is necessary to do. What needs to be done is not really open for judgment. Thus, the

most common way caregivers used to describe their feelings is that the labor is something

you “have to do”: “You do what you gotta do.” “I just gotta do, what I gotta do to keep

her well.” “ I don’t really view it as a duty or a chore. I just do what I have to do.” “I

don’t know, coping, you don’t think about it at the time. So it’s just what you do.”

(Interestingly, Kathleen Murphy (1991) in a clinical study of stress and coping by

caregivers of ventilator dependent children, observed this same sentiment which she

identified as a coping strategy.)

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In order to “do what you gotta do”, caregivers indicated that due to the immediacy

of the need, they did not have the luxury of thinking much about their response. Some

caregivers said they were so busy with what they had to do, they “didn’t have time to

think about anything else”. Caregivers focused on the labor and in response to anxiety,

some actively pushed out negative thoughts about what could happen:

I was afraid I would mess something up. What if something went wrong? The

PICC line in itself kind of scares me. Cause they’re such a high risk for infection.

But … you know I kind of built up my confidence and tried not to think too much

about it. It had to be done and I had to do it, so.

Another caregiver says when she was giving IV antibiotics, the tried not to “dwell on”

her fears:

Well what if I make him sick? I mean what if he died? And while this is going on,

I mean that thought ran through my mind a lot. But, I mean you think, you can’t

dwell on it or else you’d never get nothing done. But it did go through my mind.

When I asked one caregiver if it was emotionally difficult to perform medical procedures

for his own family member he said:

I knew it had to be done…I mean that may be kind of hard sounding. I don’t’

mean it that way, I mean you do what you have to do.

Caregivers describe processes where they intensely focused on the task at hand. In

doing so, they shut out thoughts of uncertainty, not only about the possible problems if

they did something wrong, but also about the unknowns of the future. One caregiver said

after her son’s accident, his health was up and down. She wondered how much he would

be able to recover. Focusing on the labor was a way to redirect her thoughts from the

unknown:

So that was it, I guess –the unknown. That probably was the hardest thing to deal

with in the beginning –was just the unknown and trying to …not to dwell on that,

and to focus on what we needed to do.

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After intense periods of focusing on the labor, some caregivers describe

collapsing or “crashing”. One caregiver said she focuses on getting the job done and says,

“I haven’t cracked yet.” Another describes the regimen of administering a course of IV

antibiotics:

While it’s going on, I’m fine. I have my break down afterwards. So after it was all

over, I probably fell apart, that’s usually what I do.

According to another caregiver:

I have always felt like you just gotta do what you gotta do to get the job done.

And then after the fact if you want to go away by yourself and have a little tissy

fit, then that’s what you need to do. But while you’re going through it, you just

need to do it.

When caregivers “do what they have to do”, they may ignore feelings of worry,

anxiety, or being tired. The labor itself becomes the instrument that caregivers use to

“align” (Stokes and Hewitt 1976) their feelings with what they feel they must do.

Caregivers’ “accounts” (Mills 1940) show how they focus on the immediate needs of the

care receivers, keeping them as healthy as possible, and especially in cases of potential

long-term care, out of institutions. Thus, their labor is active, they reconcile their feelings

with the simultaneous enactment of the labor process, and in some ways labor is seen as

coping, “I did what I had to do.” Thus, the caregivers I interviewed did not have feelings

of guilt for not feeling a certain way. While most say that no one would choose the

situation, they do what they feel they must do to honor their relationships and help care

recipients heal. Their stories reveal not only the positive effects of the labor process on

their identities, but also the inherent constraints in the labor process, which may cause

them to suppress their own feelings of anxiety.

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Identity in Skilled Caregiving: Caregivers as “Experts”

Because of their intimate knowledge of the care recipient and their new skills in

performing labor, caregivers form a working knowledge, which incorporates care

receivers’ emotional and physical needs with the medical procedures that are enacted.

Caregivers’ identities are thus juxtaposed between their relationship as a parent, spouse,

or child and the performer of medical skills. Claire Williams (2000) shows how mothers

of teenage boys with a chronic illness act as “alert assistants” (Charmaz 1991) in

anticipating and meeting their sons’ needs (2000: 254-255). Williams (2000: 269) finds

that mothers acted in ways that minimized the stigma so that sons could “pass

successfully in public” (Goffman 1963), thus preserving their sense of masculinity. In

this case then, action was taken to increase positive identity for the care recipients.

Medical sociologists have, to varying degrees, recognized lay caregivers’

knowledge. Prior (2003) estimates that the term “lay expert” has circulated through the

medical sociology literature since at least the early nineties. Prior, though recognizing the

“experiential knowledge” of lay persons, cautions that such knowledge is limited to

understanding changes in medical symptoms in one or a few specific cases and that lay

persons do not have the diagnosis capability and the advantage of multiple cases which

come with full medical knowledge (2003: 48).

Previous scholarship has shown that many caregivers are extremely protective of

their loved ones in institutional settings (Foner 1984; Bowers 1990). Lindhardt et al

(2006) observe that while some caregivers of the frail elderly trust hospital personnel and

view hospitalizations as respite, others are quite anxious because they experience

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situations in which they believe their loved ones do not receive adequate care. They

worry about the shortage of staff and the potential for mistakes, and their quest to

preserve the dignity and health of their loved one means they stay for long periods of

time and perform much of the care work themselves (Lindhardt et al 2006 p. 143).

Indeed, many of the caregivers I interviewed talked about the need to be vigilant

in the hospital and several said they witnessed mistakes or situations that made them

uneasy. One caregiver who took care of her son, who had a spinal cord injury, said it was

a problem when hospital personnel did not know how to transfer him properly:

The people that got him ready in the morning were okay, they could lift him.

When he came back from therapy, they couldn’t lift him….The first time, I had to

lift him. She (the nurse) said, ‘Well I’ll call a guy down.’... So she called one of

the nurses down. He was a male nurse and he said, ‘Okay how do I do this? I

don’t know how to do this.

Other caregivers witnessed improper medication administration or the incorrect

carrying out of procedures:

When you do a cap change it’s a very sterile procedure –masks, sterile gloves,

sterile drapes, everything, because you’re taking the cap off the hub, which is –

this thing goes to his superior vena cava. I mean …she just takes it off. I’m like,

“umm”… She had nothing. She had a sterile drape over him…she had on non-

sterile gloves. No mask. Nothing. I said, ‘This is a sterile procedure, what are you

doing?’ So she’s like, “Huuuh” (sighs) and just looks at me… So I said, ‘I’m

gonna hold that. I’m gonna hold that. And you’re gonna go get sterile gloves.’

She’s like, “Huu”. … And so she put something down, I’m like, ‘Yeah, that just

touched right there so that’s not sterile anymore.’ So then she had to get us

everything. She had to… oh… she was pissed.

This caregiver said that the hospital now has a special floor with “dedicated

nurses” who know what to do for patients with these medical needs. But many caregivers

talked about similar issues, and said they had gained substantial knowledge so that they

understood the potential danger if they did not speak up:

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You have to be there to ask the questions and make sure that the right thing is

happening according to the doctor’s orders. There was an incident where she had

just got out of her first surgery… we were alternating 24-hour shifts, so as to

always have open eyes, and we were recording the Foley bag… It’s urine…with a

catheter, okay. And we knew what was going on. It was running somewhere

between 300 and 600 milliliters…on a regular basis. Then all of a sudden it

stopped. And so I talked to the nurse and they said, ‘Well she hasn’t been getting

anything (fluids).’ She’s getting an IV. She got a bolus, and saline hanging in

there. So in another hour she woke up and she was having stomach pains and so I

call the nurse in and she says, ‘Well, we’ll wait a little longer.’ ‘No! Call the

doctor now! I have records that show that she’s been doing this and this and this

every hour and a half. Now she has nothing. So call the doctor now, please.’ And

so she did. In about a half an hour the doctor came up. And there was a kink in the

hose. So it was backing up in the bladder...now the bladder in a woman is located

slightly different than the one in a man. And it has a shorter tube. The urethra is

shorter than in a man…and… this was an important thing to get corrected quickly.

Because the next thing that happens is it starts backing up into the kidneys, you

run into renal failure…

Caregivers’ stories were not just about the hospital, but extended to outpatient

settings, as well as home settings. One caregiver talked about how she is reluctant to let

nurses at an outpatient lab touch her son’s central line:

When you get a different nurse every time, they don’t follow the 30-second scrub

rule. You don’t know, you know? … I don’t need ’em touching his line. I can

touch his line. You can just take the labs for me. Thanks. (laughs)

Other caregivers were frustrated that some medical professionals didn’t

understand the peculiarities of their loved one’s condition:

I’m not sure – a lot of it is there’s a lot of people in the profession that – and I

don’t care whether it’s the caregiving profession or the nursing profession –who

really don’t know how to handle people with ALS.

What is clear is that caregivers have developed extensive knowledge of care

recipients’ emotional and medical condition and in some cases they felt they knew what

to do when some trained medical professionals did not. This can place excess emotional

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burdens on caregivers and can cause them to challenge the authority of medical

professionals. According to one caregiver:

When you have a lot of spasms, that constricts everything, and it will actually

constrict your chest too, where you can’t take good breaths. So he would have a

panic attack. And sometimes it would last for 45 minutes where I’d have to be

either using the cough machine because it puts in more air into his lungs…or an

Ambu bag (manual ventilator), or something like that, and to try to get him

through his anxiety. And he’d be screaming, you know, that, ‘I’m gonna die! I’m

gonna die! Call the ambulance!’ And it’s to the point where… you get to that

point where you don’t know what to do. I mean…in the back of your head, you’re

going, ‘I know what this is, I know how to take care of this, and if I can get him to

calm down, and have enough patience, it’ll all be fine.’ But then on the other side

–so I call the ambulance. And that’s where the anxiety --the frustration comes in.

Because the paramedics come and go, ‘What am I supposed to do?’

Caregivers, at times, felt like they, rather than medical personnel, were in charge

of medical care. One mother said a nurse fought with her to try to change her daughter’s

feeding tube formula to an adult version and she tried to explain, “Every time they do that

she gets diarrhea.” When the change resulted in diarrhea, the nurse apologized. The

caregiver told her, “That’s okay. Just put ‘Mom said’ on the chart. I don’t want to get

anyone in trouble, so just put ‘Mom said’. I’ll take the blame.”

Another mother said after she brought her son home from the hospital, he had a

feeding tube and the doctor told her it could be removed when he began to eat more on

his own. She said he began to “nibble here and nibble there so …about two months after

we got home, I took it out.” When I asked if she took him back to the doctor to have it

removed, she said,

I took it out…I was being doctor, nurse, judge, everything else, so I just took it

out. Yeah the doctors had told me it only took like 2 days to heal up…So I just

took it out and put a rag on there and waited for it to heal.

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Because skilled caregivers were “experts of sorts” in the physical and emotional

needs of care recipients, they had high expectations that nurses and other medical staff

would display not only competency, but also caring attitudes toward care recipients (See

also Abel 1991). When caregivers believe that care recipients receive “good care”, this

has positive effects on their emotions and identity, because they believe their loved one is

receiving dignity and respect. If care recipients experience “bad care” this may cause

emotional stress and frustration, and caregivers often exert agency in trying to correct

problems or solve unmet needs.

One caregiver describes how she was upset when nurses didn’t display a caring

attitude or demonstrate competency in the job:

Our home is our safe environment. We tell our kids that – our home is a place

where they can always feel safe and they always know they’re loved. And when

someone comes into our home that may not necessarily reflect that type of

atmosphere, where they don’t really want to be there, or they act like they don’t’

wanna be there, that makes it kind of tough…And it’s kind of unsettling for me to

watch someone like that care for him, if I know they’re not really enjoying their

job…And the other thing we had trouble with was … not all of ’em used the

sterile technique, which really flipped us out because… you must have sterile

techniques! I mean or you’re gonna catch a bug…so that’s very unsettling…They

would just, you know, be very sloppy with their work –that’s a better term to

describe it. There’s no room for sloppiness when you’re a nurse.

This caregiver, along with the majority of the others, generally described good

relationships with home health nurses, but as this case demonstrates, there were several

situations where there were issues – either in agencies’ lack of responding to needs or in

attitudes of staff. One mother said if she has a nurse who “is a little bit cooler to the

kids…than that kind of puts your guard up.” One mother was concerned that the nurses

did not listen to her daughter about how she was feeling:

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They would just come in and stay two or three minutes and out the door they’d

go, and not care whether she wanted to talk, discuss something with them, or

anything.

Another mother was bothered that when nurses come to check on her son “they’re always

in a hurry” And she believed they relied too much on her to monitor her son’s care:

Well you know, he’s my son and I think that everybody should look over every

square inch of him, you know, just to make sure everything’s okay, and that’s

what I do. And I guess it’s probably because I do it all the time, that they don’t

feel like they have to, you know?

Several said they had left doctors, or spoken up to agencies about home health

nurses if they did not display what they considered to be caring attitudes:

We had a couple different ones (nurses). We had one that…told us she had been a

sergeant or something, in the army. And she was rough and mean… So we called

and complained and told ’em never to send her back again…they did not send her

back anymore after that.

Indeed, many caregivers displayed agency in demanding good care for care

recipients. According to a single mom:

I always let them know if I had a question, if I had a problem, if I had anything go

wrong at all –you’re getting a phone call and you’re gonna answer my question

whether you like it or not.

Conversely, when nurses or medical personnel showed caring or concern,

caregivers expressed gratitude and trust. One mother of an adult care recipient who said

they “do not stay” with doctors or other medical personnel who display uncaring or

insensitive attitudes, describes a doctor she liked:

Yeah, I think one thing that I like about any of the doctors that he sees is when

they look at him and talk to him rather than looking at me and talking to me…

And she (the doctor) looked at him and talked to him. And I think that, really to

me, that is one of the most important things, because it’s not me that they’re

treating. It’s him that they’re treating. So, I have in fact, when I’ve gone…with

him to a doctor’s appointment, and the doctor looked at me, I said, ‘Don’t ask me,

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ask him.’… You know, … I don’t think they realize they’re doing that, but they

do it a lot.

Another caregiver describes a home health nurse’s positive interaction with her children

and husband (the care recipient):

She’s always happy, she’s always encouraging, she interacts with our kids, she

allows them to stay and visualize and to understand what she’s doing…If I need

something that I’ve been struggling with, like if he’s having an infusion at home

and he’s having a pump delivered from the other home care company…she’ll call

them and say, ‘Could you pick up that pump? They’re finished with it.’ And save

me a phone call. It’s really nice.

One single mom describes what she liked about a nurse that was eventually assigned

through a waiver program. The nurse saw her son as a “whole person” and asked about

his feelings and what he likes to do:

Well (at) first I was really nervous. You know having somebody else come in and

take care of my kid that’s never even seen my kid before. But she came in and she

…asked the right questions. And ‘When does he take his pills? And when does he

get cathed? And when does he –does he like to play games? Can he play games?’

Cause that’s my son, his whole life is games. Yeah…That’s the thing that hurt

him the worst. He didn’t care that he couldn’t go outside, he didn’t care about

none of the rest of it, he just wanted to play his games…And she, basically, I

think she even bought him a game, I can’t remember which one it was, but I think

she bought him a game, and they would sit down in his room and she would

watch him play that game and comment on it, and you know, just basically give

him a hard time like I would. And I liked that.

Because caregivers became “experts” of sorts, many talked about feeling different

from others around them. While they are generally not credentialed professionals, they

also felt different from other parents, spouses or children. They talk a different (highly

medicalized) language and they do different things. When I asked one mother if she had a

medical background she stated:

No. Everyone teases me now that I do. (laughs)… I joke because you know

sometimes when doctors and nurses talk to you and they’re using the technology

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and medical terms and everything and you kind of look at 'em like, ‘What?’ You

know, ‘Can you explain that?’ Well, sometimes when I talk to my family and

friends now, they’re like, “What?”(laughs) I think that I’m talking very, you

know, very common terms, and they look at me like, ‘What are you talking

about?’

Several expressed that the performance of skilled medical labor sets them apart

from what many of their extended family members, friends and acquaintances can fully

grasp. One caregiver tells me:

And it’s funny cause my mom …will come visit, and she’ll be like, “I don’t think

you understand what you guys do everyday and what it looks like.

Not only do caregivers feel differently from others because of their medical

knowledge, they also feel differently because they are confronted with issues that others

are not. In speaking of her worry if something ever happened to either herself or her

husband, one woman fears they might one day have to place her son who has both

cognitive impairments, and skilled medical needs, in an institution. She said:

So those are (the) kind of decisions that most parents are probably not making –

that kind of future plans for their kids. But we’re kind of forced to. And you know

it kind of upsets us.

Other caregivers said that friends or coworkers don’t always understand why they

can’t be flexible with their time:

We don’t really complain about anything so people at work don’t

really…understand what we do. You know, they just don’t… because we don’t

claim it…We had some friends…(say) let’s go out of town and spend the week-

end. You know, they just don’t think about it.

Due to the skill and amount of time generally necessary, a few caregivers said it is

sometimes hard when they hear others complain – for example if coworkers complain

about overtime, or if friends complain about comparatively trivial issues. According to

one caregiver:

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We just live differently than if it hadn’t happened. It just sort of put things into

perspective. And if someone’s complaining about, you know, they had a really

rough day doing something… I just think, “No that’s not rough compared to what

it could be.”

Interestingly, newfound skills and knowledge directed some lay caregivers to seek

careers in the medical profession. Even though she said she was not originally inclined

toward a medical profession, one mother decided to attend nursing school and described

her experiences as “the only reason I decided to do nursing.” Family members from two

other of the twenty-five families also chose careers in nursing because of their

experiences.

Love, Work and Identity

As seen, because of caregivers’ enactment of skilled medical labor, they feel

different from the people around them, but also different from medical personnel. They

become “experts” of sorts in the medical and physical needs of care receivers, and often

exhibit agency in their labor. But how do caregivers conceive of the labor they perform?

Corbin and Strauss (1988) found that caregivers of spouses with chronic illnesses often

don’t want to talk about the issues they face because they don’t want to be considered

“bad spouses” (p. 289). In studying adult daughter caregivers of Alzheimer’s patients,

Abel (1991) found that “because their own notions of good care compel them to

camouflage their activities, they discourage rather than invite gratitude” thus they seldom

“receive the affirmation they seek” (p. 113).

The caregivers I interviewed generally did not downplay the work they did, and

fully acknowledged the length of time and skill their labor takes Granted, some

commented that after they got used to the procedures, they could do them more quickly

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and without thinking, and for those who have fewer procedures to perform, they may

eventually feel that the work is very manageable. (For example, one caregiver described

taking care of an NG tube as “nothing in my day.”) In speaking of her labor, one mother

said “it sort of became my job in a way” and another caregiver commented that going

home from work still brings “another eight hours” of “work” to do. According to one

mother:

It’s like a second full time job really… cause a lot of people ask you, ‘How do

you do it?’ I don’t have any choice. You do what you have to do, no matter. We

don’t have much down time.

Although caregivers sometimes described their labor as “work”, or a “job” due to

the amount of time involved, the skills required, and the fact that it often interfered with

their ability to hold down a job or work outside the home, much as DeVault found (1991)

in her work on “feeding the family” most caregivers were still hesitant to fully label it as

“work”. As noted earlier, and by Heaton (1999), caregivers formed their thoughts about

their caregiving labor within the context of the relationship. The following quote

demonstrates the simultaneous recognition of the scope of work as well as the feelings

about it, from a caregiver who was let go from her job due to the amount of time

necessary for caregiving:

There were a lot of times I viewed it as work. It was my full time job. And it was

the hardest work I ever did. But, I also viewed it as an act of love, because we

took our wedding vows seriously and I promised him that we would be together

till he died. And he used to get so upset and I’d say, ‘If it was me would you do

it?’ ‘Well of course I would.’ And I said, ‘So what’s the difference?’

Indeed, caregivers seemed to derive the most rewards or satisfaction from their

realization that they were able to help the ones they love, contribute to their health or

comfort, or more acutely, to keep them alive. According to Bridget, “I’m glad I was able

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to do it…Makes me feel better, knowing that I was able to help him.” And Cheryl,

“Makes me feel like there are tools out there that we can use to contribute to her health.”

Caregivers also took pride in the quality of care they believed they provided, “He never

had any skin breakdown…he stayed well hydrated, well nourished,” or says another

caregiver in speaking of bowel and urinary functions, “he never had an accident”. Thus,

although caregivers acknowledged the difficult aspects of the labor – their lack of sleep,

worry and anxiety, they seemed to derive emotional benefits from knowing that they

helped those they loved.

Caregivers identified both positive and negative effects of the emotional and

physical labor on their identities. A few said the labor had made them “harder” or

“stronger”. One caregiver of a care recipient with cystic fibrosis says she now helps other

families who are newly diagnosed, and feels a great deal of empathy for them, but also

adds:

And in other respects I think it has made me a harder person because I don’t take

much flack from anybody. So I have to keep that in check… And sometimes it’s

hard for me to do. Because I… know what I want and what I need. I know what I

need but I just …I’m not always sure how to get to that point where I get what I

need…. And I don’t stop till I get there…. And before, I probably, I know I wasn’t

that way, because I wasn’t raised to be that way.

Some caregivers said their new skills made them feel more confident. One

caregiver said she realized “we can do anything that we need to.” And another who

originally felt very disinclined toward nursing said:

It has made me more confident. I am a wimp... And to know what I have done for

him…he can’t believe, you know. Because I don’t’ know, I just never was into

that stuff.

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Several caregivers found that the situation put things in perspective and that they

no longer worry about small things:

Oh yeah, yeah, I mellowed big time, I’m not, I don’t worry about little things. I

was always (a) very immaculate person with the house, and everything had to be

just right and I just –that’s very unimportant. Material things don’t mean anything

to me, I mean you know, like they did …

Many expressed that they have more empathy for others:

I don’t know certain things that you… do think about…were life changes. I don’t

believe in right or wrong anymore. There’s no right, if somebody wants a trach

and somebody else doesn’t, there is no right or wrong choice there. You know,

somebody does something to help the person they’re taking care of, and do a

mistake, it turns out one way or another, they aren’t wrong. I wouldn’t call myself

a flaming liberal by any stretch, but I think I probably have (a) more liberal or

open view of life and other people now…because of the stuff that we went

through together.

Other caregivers said that the situation made other family members, including

children in the home, more compassionate. A few also believed that the way they handled

the situation had been a positive example to other people. Several caregivers said that

they experienced more quality time with the care recipient and others in the family. Some

also said it changed their outside relationships – friends who couldn’t handle the situation

fell away, and other friends became closer. This is also the case with marriage

relationships. As seen in Chapter 3, there were situations where husbands could not

handle the care work, however, there were also situations where couples became closer:

I think my husband and I –going through it together … that made us have a much

more intimate relationship than I think anything could have –ever…because we

went through it together and we came out of it stronger. So I think that really

helps. So, he and I can talk to each other.

Although caregivers experienced positive effects on identity, they also had

experiences, which could negatively affect identity. Because caregivers prioritize care

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receivers’ health, it is obvious that there are intense periods when they feel anxiety and

continue to push themselves. As one caregiver says:

It does get –the burden is heavy. But you just get up and you keep going and

going. And... I have never crashed…from it, mentally or anything, because I

know he needs me.

According to another caregiver:

There was times when I was like, ‘Okay I’m done. I can’t do no more… I give

up.’ But then I never could do it. I couldn’t do it. I couldn’t let somebody else

take care of my kid.

As seen in previous chapters, some caregivers experienced being unable to work

or being fired from jobs due to caregiving duties. A single mom who hurt her back lifting

her son told me it was “impossible” to work outside the home:

It’s impossible: Between doctors appointments and therapies… it’s plain

impossible.

These experiences not only diminish resources, but also curb activities that could

have positive effects on identity. Also, as seen in prior research, as well as my own,

caregivers often give up time for leisure and relaxation. Caregivers also talk about how it

is hard to travel or take vacations. In these ways, there is a danger of caregivers becoming

ingrown or missing out on experiences, in which they might grow in other ways.

According to one caregiver:

I just, I think that I’m becoming more secluded… I think I’m just tired and when I

had all the energy before to really put into calling family and calling friends…I

think I’m just kind of a little bit more, wore out.

Because caregivers “do what they gotta do” it is extremely hard for them to self-

limit the care they give. There is a danger, then, of caregivers’ own needs going unmet

while they focus on the needs of care recipients. Bounds of relationships are endless and

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are not dictated by time clocks. Those who care might also do labor despite their

reluctance and/or feel they can never do enough. “You do what you gotta do” expresses

not only how physical and emotion work can lead to positive identity related to the

relationship, but also sums up the costs and constraints of caregiving.

Final Thoughts on Emotion Work, Identity and the Structure of Health Care

Within the American health care system, it is relationships that are pivotal in

transferring skilled labor to lay caregivers. The health care system is structured so that

parents, spouses, and children assume skilled work. As shown, helping their loved ones

may have positive effects on identity as caregivers emotionally fulfill the caring

relationships they cherish. However, just as top down approaches, which posit alienation

and exploitation, seem crude, so does focusing only on the positive aspects of a

challenging process without addressing the negative effects. Those at the intersection of

“public” and “private” worlds are often pulled from both sides and experience multiple

and shifting emotions. Even as they develop agency, become “experts” of sorts,

experience positive effects on relationships and identity, and feel love and thankfulness,

so too do they experience frustration, a possible loss of confidence in medical authority,

problems with resources, anxiety and exhaustion. To the extent that their labor limits

other activities or their abilities to work and develop other avenues of identity, there may

also be negative consequences for caregivers and care recipients alike (See also Noddings

1995). Moreover, over-dependence on one family member may also hurt care recipients’

feelings of independence or self-hood.

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Although caregivers experience both positive and negative effects on self-hood,

they are still interlocked in a system in which they must navigate and fight for resources.

In an interesting study, nursing scholars, Oudshoorn et al (2007) analyzed the power

dynamics in four triads –each consisting of a nurse, a family member, and a care recipient

–who are involved in home palliative services in Ontario, Canada. Following Giddens

(1977; 1984), they found that nurses, family members, and care recipients are caught in a

“hierarchy of power” that works at the macro, meso, and micro levels. In this hierarchy,

at the meso level caregivers and care receivers expressed “personal power” for example,

when they evoked resistance strategies by demanding a change in nursing personnel

(p.1440). At the micro level, caregivers and care recipients experienced powerlessness,

“in a home care system that did not meet their expectations” -for example when clients

experienced a decrease in nursing visits despite their wishes (p. 1440). Nurses however,

also experienced both power and powerlessness. At the “meso” or “relational” level,

nurses experienced professional power based on their education and occupational status

and could either “dominate” clients (for example when they “manage clients” by moving

the time that they come to see them) or “liberate” them (for example by being comforting

or caring) (p. 1439). At the macro-level nurses experienced powerlessness due to “fiscal

pressures” and “rules and regulations” (2007, p. 1438).

Although the Oudshoorn et al study does not specifically address caregiver

identity, their analysis of power is germane to the situation I find with caregivers and

nurses. Within the confines of the structure of the health care system, nurses and

caregivers experience both power and powerlessness. As seen in prior chapters, on the

structural level nurses “hands get tied” with costs pressures; and families are under

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pressure to perform procedures and to be “independent”. However, as shown in this

chapter as well as Chapter 4, any discussion of power relations between caregivers and

nurses falls short if we do not treat the relationship between the care receiver and the

caregiver as a central component. For it is the care receiver to whom the emotions of both

caregivers and nurses are directed, and this care process is a central part of identity for

each. It is the emotion work of caregivers, as well as the emotional labor of paid nurses,

which helps facilitate the transfer of skilled labor from the public to the private domains.

For this reason, caregivers demand good care, and nurses respect caregivers who they

believe truly care for the care receiver. “Power” is therefore mediated through emotion

work toward the care receiver and we cannot fully understand power relations without

first following the trail of emotions in the workplace which bridges private and public

spheres.

Importantly, while many caregivers do skilled labor because of love, structurally

our society lacks what Kittay (1999: 28) calls “connection based equality”. In a society

with “connection based equality” there is an understanding that everyone is at times,

cared for. Essentially this concept rebuts the current “individual based equality” which

not only falsely asserts that all individuals are equal to each other, but also denies

relationships in which persons care for one another (Kittay 1999). According to Kittay

(1999), when we ignore relationships of “dependency” –which are “inevitable”, are part

of the “human condition”, and through which we all are, at times, cared for, we create a

“system of exploitation” which diminishes the moral worth of the caregiver as well as the

person cared for.” (p. 28). Tronto (1993: 111) makes the point that in a society that denies

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the importance of caring, the powerful can even deny the “invisible care” they receive

(Tronto 1993: 111).

Once when I, alongside a registered nurse, was drawing up IV medication at my

dining room table, I had a realization, “We are doing the same work”. In this chapter I

have tried to explore more fully the meaning of work for caregivers by focusing on their

emotion work and its effect on identify. The enactment of skilled medical labor, though

not downplayed by the caregivers, still takes on a meaning as something “other than”

work. This is because of the emotional feelings behind the labor. The emotion work is

active and is simultaneously reified with the performance of medical skills.

Although caregivers, due to their relationships, are reluctant to call their caring

“work”, to claim that positive impacts on self-hood negate or cancel the work that is

done, is no more true at home, than it is in paid jobs. In the “public” workplace “job

satisfaction” and experiences, which positively influence identify, are not taken as

discounts of the work. If anything, they are desired features of jobs. Just because

caregivers, despite challenges, are able to experience positive as well as negative emotion

work, is not an excuse for dismissing unpaid work from labor analysis, nor is it an excuse

for the lack of policy, which would support caregivers and care receivers, alike.

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Chapter 9: Conclusion

It is ironic that I began this study with a description of a flowing meadow. Since

then, I have learned that critics often use the image of “silos” to describe the current

patchwork system of health care in America. Indeed, the system is not a free flowing,

seamless delivery of care between the farm house, the hospital, and the payer sources that

govern the work performed, but a series of stand-alone silos disbursed across the

landscape – some quite distant and others out of view entirely. These silos must be

gotten to, climbed, negotiated –in many cases without a map, much less a field guide. In

the numerous pathways between the house and the hospital, a world at the intersection of

“public” and “private” domains, caregivers become active agents who problem solve,

devise new work strategies, and fight for resources. They learn and execute work that

many home care aides are not allowed to legally perform, and some medical personnel

have not been trained to do. Yet, sociologists of work have paid little attention to the

labor processes they enact.

As feminist scholars have noted (See for example Glazer 1993), in the

intersections of paid and unpaid worlds, demarcations between “public” and “private”

seem blurred and false, and caregivers of various backgrounds, abilities, resources, and

races and ethnicities find themselves here. Patterns of gender are evident. The addition of

skilled caregiving may solidify pre-existing patterns of work, or challenge them as

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families look honestly at who can perform the care work, and what resources are

available. For women who are in vulnerable relationships, skilled labor may be the “final

straw” in marriages. For others, skilled labor may bring them closer with their partners.

While men also perform skilled care, and face many of the same challenges as women,

one striking pattern is the multiplicity of the caregiving roles of women – they are often

caregivers for children, care recipients with chronic illnesses or disabilities, and the

elderly. They are also generally more loosely tied to the labor market and are more often

threatened at their workplaces. Women are also more likely the helpers and advisers of

care in the public/private intersection.

Notably, caregivers’ journeys with care recipients reflect varied experiences in

interactions with medical professionals and in the training they receive. While some

receive excellent training prior to discharge, others receive very little – a pattern that

home health nurses observe all too often. Clearly, home health nurses see cases where

discharge instructions are not explicitly communicated and where people are even

unaware of the work they must perform at home. Training can significantly impact

caregiver confidence and expectations and an important part of home health nurses’ labor

is to manage expectations and assess whether caregivers are really “willing and able” to

perform the care. The caregivers in this study were also very concerned with making sure

procedures were performed correctly and often performed self-evaluation processes, as

well looking at health outcomes of care recipients as an evaluation of their labor. These

processes can be stressful due to caregivers concern for care recipients and the fact that

they often lack professional experience through which to evaluate their labor, have no

other cases to compare to, and may receive minimal feedback.

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Homes are not standard –in their resources, their relationships, their family

dynamics, their context, their cleanliness and organization. Caregivers are not the same in

their anxiety, their orientation to the labor, their past experiences, their relationships with

care receivers, their power in the home, or their propensity toward nursing. Attempting to

apply standardized measures and allowances of only so many home health visits is

problematic in its conception as well as its application.

With so many variables, how is it that skilled home care is accomplished as often

as it is? Though many caregivers experience feelings of anxiety and worry, they say they

“do what they have to do” to provide care for those they love. Thus, it is the relationship

with the care receiver that motivates their labor, and despite some ambigious feelings,

many have strong feelings against institutionalization. The eyes of caregivers in this

study were pointed squarely toward the care receiver with whom they bestowed dignity

and the hope of a meaningful, and to the best of their ability, normal life.

Nurses, through their care work and the application of professional ethics and

identity also focus on the welfare of the care recipient, foremost. They believe home care

enhances patient care because they can see patients in a “holistic” manner. They say they

enjoy the autonomy of their jobs and have satisfaction in seeing care recipients and

families maintain independence. Although they recognize the needs of caregivers and

often provide “extra work”, make recommendations, or try to obtain social services, there

are times when they face dilemmas and feel badly when their visits to teach or to perform

care are limited by payer sources. Moreover, while relationships between caregivers and

home health nurses vary – from caregivers depending greatly on home health, to

caregivers critiquing home health nurses as in a hurry, or as unable to educate them on

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the medical condition of care recipients, both caregivers and nurses seem to evaluate each

other based on their perceived care of the care recipient. Thus, examining the emotional

labor for caregivers and nurses allows us to see that skilled home health labor processes

are accomplished because caregivers –as well as nurses –focus primarily on care

recipients’ welfare.

Importantly, the caregivers I interviewed had been “successful” at performing

skilled nursing labor. The changing role of home health and the current medical system

leaves few alternatives, other than hospitalization or institutionalization. However,

although interviews with nurses show that “most people” do learn the skills, clearly there

are cases where there is great reluctance, where people do not feel they have the ability to

learn, and where family members do not wish to perform this kind of care for people they

love. Moreover, there are people who are not in the best of relationships. There are also

situations of abuse or neglect in the home and varying family dynamics, which may make

home care a less than ideal situation for caregivers, and care recipients, alike. Pushing

medical procedures home is not always feasible and people shouldn’t be made to feel

badly when they can’t do it, don’t feel that it is right to do it, or quite frankly, are afraid

to do it. A nurse I spoke with made this point explicitly when she told me she often

encouraged the medical residents in her hospital to think critically about the almost

automatic push toward home care. As she said: “Can I put a tube down my own kid’s

nose?” Everyday if I need to? I don’t know if I can do that or not.”

Moreover, it is not simply a matter of learning skills but of maintaining the

necessary tasks over time. Home life itself is dynamic and caregivers must integrate care

with their daily lives. Depending on the length and timing of care, caregivers may spend

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considerable amounts of time giving care. They may also suffer economic hardship, job

loss, anxiety, and constraints in exploring other avenues of positive identity development.

In a society that ties benefits to paid work we are not making way for the reality of

caregiving experiences in the lives of women or men. Still, to cast caregivers as victims

in this process denies their agency and the dignity they seek for the people they love. It is

also true that many people report positive experiences in caregiving, as they help their

loved ones lead better lives. But we shouldn’t take this to mean that it is okay to

downplay the work that is done. Positive work attributes do not discount the work done

in traditional public sphere jobs.

Carol Levine at the United Hospital Fund has been a strong advocate that nurses,

social workers and other professionals “need better tools to truly assess, systematically

and without stereotypes, each caregiver’s strengths and limitations. They need tools to

help caregivers find resources and plan for services that will compensate for limitations”

(2006, p.43). Writing in the American Journal of Nursing, Levine makes the point that

leaders in social work and nursing need better educational curriculum. According to

Levine:

The curriculum should recognize that there are two parts to family caregiving:

family, which denotes a special relationship, and caregiving, which includes tasks

and responsibilities. Any assessment should take into account not only what the

care recipient requires, but also what the caregiver is willing and able to provide.

Some caregivers are limited by age, poor health, careers, and other responsibilities

and can’t do the job alone. Assessment can help them develop realistic plans for

sharing caregiving responsibilities. Some family members may not be willing to

take on the responsibility. Forcing them into untenable situations is unwise for

the care recipient and unjust for the caregiver. Some of these able but unwilling

caregivers might be willing to take on some aspects of care if they knew that they

wouldn’t be pushed further (2008, p. 14-15).

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Clearly in the United States we focus on the medical outcome of care recipients

almost exclusively. (Although as Levine notes, hospice care has been more directed

toward the family unit.) Home care lobbyists and industry experts often argue that there

is a large cost benefit to getting people home and out of institutions. One industry expert

told me, their aim has been in trying “to get people home and helping them maintain

themselves in that home, rather than having to go back and forth to a hospital setting, or

having to make trips to the doctors’ offices.” While many caregivers did express a

reluctance to have their loved ones in institutions, the fragmented payer system, scant

policies which are tied to work situations, and little national dialogue on home care,

thwarts efforts to realize any other alternatives. There are many issues with skilled

caregiving at home and although caregivers are becoming active, and have formed groups

such as the National Alliance for Caregiving and the National Family Caregivers

Association, there is still much collective work to do in regards to caregivers’ rights and

responsibilities. Clearly caregivers who feel they have recognition, a voice, and a choice

in their labor are better off. In this regard, Canadian scholar Patricia McKeever (1999)

has said that there can be meaningful coalition between nurses and caregivers. Both are

part of a system in which policy and payer sources dictate the amount and timing of the

work that is done.

We need to make better accommodations in society and recognize the

inevitability of sickness, accidents and death as part of the human experience (Kittay

1999). Currently the U.S. has individualized solutions to care and provides very few

comprehensive welfare solutions for families (Meyer et al 2000). Moreover, as Meyer

and colleagues (2000) maintain, making individual families responsible for care

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exacerbates socioeconomic inequalities. Kittay (1999), in trying to build a philosophical

framework for caring, discusses the feminist “diversity critique”, which calls attention to

the intersection of race, gender, class, age and disability in examining inequality, and

recognizes that all men are not equal to each other, just as all women are not equal to

each other. (See hooks 1987). As a “critical response” to this critique, Kittay offers the

“dependency critique”, which also recognizes that we cannot discuss individual rights

without realizing that the “human condition” and the formation of deep relationships –

which define our humanity –create asymmetry. (See pages 8-18). According to Kittay,

while we are familiar with ideals of “individual based equality” we need to move to a

stance that recognizes and strives for “connection based equality” – which recognizes

interdependency and takes into account the inevitability of our caring relationships with

others (p. 28). As she points out, we need to realize that someone must take care of those

who need it, and “we need to ask whether doing dependency work excludes those who do

it from the class of equals, and if so, what we must understand and do to end this

exclusion” (p. 16).

Just last year, we took our son to college, some three hours from home. Although

he had learned to do his daily care, and felt it important to be independent, I was worried.

What if he needed IVs? His year was successful. He made many friends and did very

well in classes. Sure enough, at the end of the first school year, he had a hospital

admission. After the one-week stay, he was to continue the IVs for one week. He and my

husband met the home health nurse on a Saturday. We wanted home health to come

check on him daily since he was living on his own, and our insurance policy had enough

visits to allow for this. Unfortunately, the home health nurse that met them that day, told

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them that she had traveled one and a half hours to get there, had kids of her own, and

would not be able to come the next day. Our son wanted to be independent, and for him,

that meant needing services –not just having his parents do all his IVs. After she left, my

husband immediately called the agency, talked to the manager, and told him that after the

nurse’s behavior, we did not want her back. The manager was horrified and agreed that

someone else would come on Monday, and would follow up three days a week. The

nurse who came on Monday was completely professional, and later that week, we got a

call from the director of nursing apologizing for the first nurse’s behavior.

In relaying this story, I am reminded of what a caregiver once said to me, “It’s a

matter of standing up for yourself and saying we’re not doing it.” Although the caregivers

in this study displayed such agency, limitations still mean that caregivers and even care

recipients are performing a great deal of care on their own. In my son’s case, his desire to

be independent and stay in school, meant he performed much of the IV administration by

himself – an exhausting schedule for a college student. Why shouldn’t nurses be allowed

to come and perform some of the care for care recipients and caregivers who are often on

call round the clock? Moreover, some caregivers are in better positions than others to

stand up. While this study has looked at both male and female caregivers in different

relationships and family formations, and includes cases of single adults, it unfortunately

is not able to speak systematically about the experiences of those who are racial or ethnic

minorities, or those who are in nontraditional families such as gays and lesbians. These

caregivers no doubt have many more stories to tell. We need to hear them.

In many ways, my son’s story testifies to a truth voiced by the caregivers as well

as many of the home health nurses –who may provide “extra” care, or face dilemmas

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when they cannot: The “independence” we tout requires support. This notion calls on

society to realize the beauty, the struggles, the love, and the intense work processes that

simultaneously take place in the intersection between public and private worlds. Taking

a broadened approach helps us to realize our interdependency, and how the work

performed here not only benefits care recipients, but society as well. Moreover, this work

also has unparalleled influence on the ability of caregivers and care receivers to enjoy

meaningful lives, as well as to find and sustain employment in “public sphere” jobs.

Ultimately this view allows us to see, as feminists have argued, that we are all, at some

point, recipients of care.

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Appendix A: Methodological Appendix

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Between January 2009 and February 2010, I conducted sixty-two in-depth semi-

structured interviews in two mid-western states. I interviewed twenty-eight caregivers

from twenty-five families (six were spouses who were caring for children), twenty-one

registered nurses, seven other interested parties including two social workers, a case

worker, a home health agency administrator, a Medicaid administrator, a home care

advocate/ lobbyist and a caregiver advocate. I also interviewed six adult care recipients

who expressed interest in the project and offered to give their viewpoints. Respondents

were interviewed in their homes, their workplaces, or in coffee shops. Their names and

identifying information have been changed in order to protect confidentiality. Interviews

generally lasted between one and two hours.

I also had dozens of informal conversations with nurses, social workers, and

caregivers. I spent a day and a half in the field - one day riding with home health nurses,

and another observing patient teaching in a clinic. I kept abreast of current nursing

concerns through discussions with professional nurses and reading bulletins from the

American Nurses Associaton. I also attended an aging conference, a home health care

conference, and caregiver functions, including one caregiver support group.

I purposefully recruited caregivers who had performed skilled nursing techniques

in taking care of their loved ones. In order to reach caregivers who had performed a wide

range of nursing skills, I determined which types of illnesses or conditions might require

nursing labor and then made contacts with caregiver groups and associations in order to

let them know about the study. I also received some referrals from nurses and social

workers and a few caregivers recommended other caregivers. By opening my study to

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caregivers who had dealt with multiple illnesses or conditions, and bringing in caregivers

from multiple sources, I hoped to increase the variability of the labor performed and the

conditions under which it was learned and negotiated. My final sample included

caregivers caring for persons with cancer, ALS, cystic fibrosis, spinal cord injury, brain

injury, amputation due to diabetes, cerebral palsy, and short bowel syndrome. Besides

varying the particular care work performed, I also allowed the relationship between the

caregiver and the care recipient to vary. Of the twenty-eight caregivers, nineteen were

parents or guardians, six were spouses, one was a daughter, one a sister, and one an

uncle.

Research performed in institutional settings has shown that bureaucratic accounts

of hospitalizations or procedures often do not tell the full story of interactions and the

social processes experienced by patients or their caregivers (See for example, Diamond

1992). An important strength of this study is its quest to understand caregivers’ own

versions of their knowledge, competencies and experiences. Because caregivers were not

recruited in conjunction with specific hospital stays or encounters with the medical

establishment, they were encouraged to talk broadly about their experiences with multiple

care providers in their everyday lives. Therefore, caregivers’ quotes reflect their

understanding of the processes they enact. The study is not meant to judge the

appropriateness or accuracy of the procedures they perform. Moreover, because the study

focuses on labor processes as a part of the caregiving experience, it does not attempt to

analyze health outcomes for care recipients.

I recruited registered nurses in order to better understand the teaching process and

home care experience from the paid providers’ viewpoint. I located interviewees through

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initial contacts with nurses who practiced in home health care and additional contacts I

made networking within the nursing profession. Some nurses referred others and so there

were elements of snowball sampling in the process. Nurses provided invaluable

triangulation in the research process, and I was able to compare and contrast experiences

and perspectives of caregivers with those of nurses throughout the data collection phase.

Besides giving insight about teaching methods, nurses also answered questions about the

nature of skilled nursing procedures, third party payer issues, and the home care

environment in general. Corroboration by social workers, caseworkers, and

administrators was also helpful in this regard.

Despite the study’s strengths, it has important limitations. First, my sample is

limited to only those caregivers who have actually performed skilled nursing labor. No

doubt there are countless cases where caregivers do not or cannot perform such labor, and

their viewpoints are an important part of the home health debate. While I am not privy to

their stories first hand, my interviews with nurses tell me about some of the dynamics

they have observed. Another important point is that my sample is not representative of

the population of caregivers in the United States. In my quest for caregivers who have

performed skilled work, I have no doubt captured the experiences of caregivers who have

performed more skilled nursing than is demographically true of a “typical” caregiver.

Skilled nursing labor is admittedly only one aspect of care work, and many caregivers

perform other important work such as Alzheimer’s care, grocery shopping, running

errands, advocacy work, and making meals for their elderly or ill family members.

Even more importantly, my sample is not representative of all caregivers in terms

of demographic characteristics. For example, while it is true that most caregivers in the

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study are middle aged women – which would be predicted based on recent demographic

data on caregivers (NAC/AARP 2009) – recruiting caregivers through caregiving

organizations and referrals may disproportionately capture caregivers who are white

and/or of higher socioeconomic status. This has been noted in prior research and indeed,

most caregivers in this study are middle and upper-middle class whites. However, the

study does offer good cases for comparison with regard to socioeconomic status. I am

able to illuminate how caregiving affects the ability of caregivers to perform paid work,

and how it changes work patterns, particularly for single caregivers. I am also able to

provide a greater understanding of how payer sources stratify and shape labor processes

as they directly determine what particular benefits are available to caregivers. Interviews

with nurses also shed some light on how caregivers who face educational barriers such as

illiteracy are affected in home health processes.

Prior research documents the salience of race and ethnicity in interactions with the

medical establishment. African Americans, for example, are less likely to have access to

services and may experience discrimination in interactions with medical providers

(Wright and Perry 2010; Malat and Hamilton 2006). Ethnic minorities who have

language barriers also face additional obstacles. Further research is definitely needed in

order to better understand the experiences and challenges faced by racial and ethnic

minorities as they negotiate home health labor. I hope this study will serve as a

springboard in that endeavor.

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References

Abel, Emily K. 1990. “Family Care of the Frail Elderly.” Pp. 65-91 in Circles of Care:

Work and Identity in Women’s Lives, edited by E. K. Abel and M. K. Nelson. Albany,

NY: State University of New York Press.

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