JOSEF HORL

L O O K I N G B A C K T O C A R E G I V I N G :

F I N D I N G S F R O M CASE S T U D I E S I N V I E N N A , A U S T R I A

ABSTRACT. This report is based on life history case studies with former caregivers in Vienna. Three mechanisms of social exchange are reported in retrospective accounts of the caregiving experience: gratitude from those cared for, material compensations, and mutuality in relationship. Caregivers were motivated by a sense of obligation based on reciprocity and at the same time expressed distinct feelings of a lack of alternatives. Caregiving as a way to enhance status is discussed.

Key Words: caregiving, life history, social exchange

CAREGIVING AS BIOGRAPHICAL EXPERIENCE

In recent years the central role of wives, daughters, and daughters-in-law within caregiving relationships has prompted considerable research into the study of caregiver burden. There can be little doubt that the tolerance levels of caregivers are frequently exceeded (Bruder, Klusmann, Lauter, and L0ders 1981; Cantor and Little 1985; Horowitz 1985; Levin, Sinclair, and Gorbach 1983). Almost all studies report severe restrictions in personal freedom and problems coping with psychological stress which is even more burdensome than performing physical tasks. Nevertheless, the basic motivation of family caregivers seems to be more or less intact (Cicirelli 1981; Socialdata 1980; Vierter Familienbericht 1986). Less attention has been paid to the carers' evaluation of longstanding caregiving relationships after the completion of this task. This report seeks to illuminate the nature of long-term caregiving as it is interpreted years later by former caregivers.

Results of cross-sectional social surveys reflect only a moment in the given social relationship. Biographical research attempts to avoid this drawback and to measure social processes through time (K~_rp~ti 1981). Furthermore, biographic interviews can be applied as a scientific technique to attain a deeper knowledge of intentional individual actions (Fuchs 1984; Steinbach 1980). It should be made quite clear, however, that the sociological analysis of life histories does not focus on the uniqueness of individuals. Rather the general concept is to explore the life histories of persons who are in comparable social situations or stages of socialization. The individual horizon of experience becomes thus an illustration of collective experience.

There are several controversial points to keep in mind with regard to the validity of retrospective accounts. Halbwachs' (1952/1925) radical concept of "collective memory" says that memory is the result of social life: each of our

Journal of Cross-Cultural Gerontology 4: 245-256, 1989. © 1989 Kluwer Academic Publishers. Printed in the Netherlands.

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recollections is related in manifold ways to the life of society, particularly language; there is no accumulating individual memory at all, but only a social reconstruction of the past. Even if one adopts a somewhat less radical position, there can be little doubt (Kohli 1981) that the subject thematicizes and con- structs his or her own biography in a given situation and, by doing this, reaffirms (or even constitutes) his identity. This includes post festum ideologizing of past life events as well as a reshaping and re-evaluation of life according to particular life experiences and the present needs, fears, and interests of the respondent. Thus, the most serious difficulty lies in the lack of a clear conception of what

kind of subjectivity is to be gained from autobiographical material. As Clausen (1972) observes:

Adequate understanding of a given person's life-history requires that one know both how that person viewed influential events at the time of their occurrence and how he subsequently interprets them. Ideally, one would like to know the nature of the "objective realities" that were encountered at any given time...

This difficulty has nothing (or little) to do with the personal sincerity of the narrator; the reconstructive character cannot be eliminated by sincerity. At the latest since Bartlett's (1932) psychological work we know that we do not retrieve static, unadulterated memory traces and that exact remembering must be regarded as the exception to the rule. There is some empirical evidence that remembering is no repetition of the past but a social reconstruction. In Elder's (1974) and in Bertaux' and Bertaux-Wiame's (1981) investigations people recollect experiences differently according to the economic position achieved later. Similarly, it is to be expected that a caregiver's memory will endow certain episodes with a symbolic meaning. It is plausible that if a caregiver seeks social approval and/or wishes to minimize cognitive dissonance, she or he will reconstruct unconsciously caregiving experiences in a way to enhance her or his status. Past situations simply do not possess a distinct separate identity anymore in a later life phase.

These objections to retrospective accounts - as pertinent as they may be - do not seriously harm the specific goal of this study. First, the problem of inade- quate memory should not be exaggerated to the extent that there is an assump- tion of total invalidity of retrospective reports. We are inclined to think that usually there is at least some truth in what is being narrated. Second, what the "objective reality" at the caregiving period was would be interesting to know, but it is the subjective view which has shaped the caregiver's present attitude. Life history research in this sense refers primarily to the exploration of internal cognitive processes:

To inspect biography is to display the work that enters into its production and subsequent reproduction ... Lifelong troubles are interpreted and aligned to fit the biographical needs. (Gubrium and Lynott 1985:350).

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The sociological task is to investigate the social foundations for subjectivity. This particular study tries to demonstrate that caregivers' biographical reconslructions are shaped around: (a) the norm of reciprocity and social exchange, (b) feelings of lack of alternatives, and (c) strivings for status enhancement.

METHOD

In November 1983 49 biographical interviews with elderly people (over sixty) were conducted in a lower to middle class district of Vienna. The sample consisted of people who were visited in the course of an information campaign to promote the knowledge of social services. Among the respondents a sub- sample of 18 persons (15 women, 3 men) reported life histories which included periods of caregiving to adult persons. Only this life phase is analyzed in this paper. Twenty-five open-ended questions focused on the circumstances and motivations at the beginning of caregiving; whether the respondent was the only caregiver; kinds of caregiving and amount of time necessary; reactions of other family members to the caregiver's activities; patient's wishes and reactions; feelings of burden and whether or not the caregiving situation was perceived as fair; whether the caregiver felt restricted in freedom of action during the caregiving period; whether she or he sought any help from outside; changes in amount or quality of caregiving and in the behavior of the patient during this period; and the circumstances of the ending of caregiving.

This research is exploratory. Because of the limitations of the sample (small, urban, nonrepresentative) findings cannot be generalized to the total Viennese or Austrian population. Interviews regarding the caregiving period averaged 90 minutes. Age of the respondents at the time of interview averaged 70 years (median), ranging from 61 to 75 years. Due to the exploratory nature of the study there was no fully operationalized definition for caregiver status: each person was interviewed who responded positively to the following question: "Did you ever take care of or give support to an elderly person for a longer period of time?"

CHARACTERISTICS OF CAREGIVING SITUATIONS

At the time of interview the respondents' caregiving careers had been terminated from less than one year to more than 40 years, averaging 9 years (median). There was one current caregiving relationship. The age of caregivers at the onset of care varied from 27 to 69 years, averaging 55 years (median). One third had already surpassed the age of 60 when they became caregivers. This glance, thus, confirms the often reported fact that it is mainly the middle generation (of women) between 45 and 60 who performs the caregiving activities (Hirschfeld 1983; Lowy 1983). At the end of their caregiving career, however, no less than three fourths had reached sixty years of age: two caregivers were over 70.

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Shared households characterized 14 of the 24 cases; in 5 cases the caregiver lived in the same block (mostly door-to-door), and in the remaining 5 cases the caregiver lived no longer than half an hour's distance away. Nine of the shared households were formed in the course of the caregiving process, while the other 5 had existed prior to the caregiving situation.

The length of caregiving careers varied between two and a half months and 16 years, averaging 4 years (median). It is not possible to specify precise daily hours of help in shared living arrangements. Those who lived in separate households provided an average of 3 hours (median) of help per day, ranging from 2 to 6 hours. In all cases help comprised emotional support and the usual homemaker services; 7 of the frail elderly were still able to perform the tasks of personal hygiene most of the time on their own. All in all one may conclude that the respondents' claim of performing a caregiving role is justified; their statements are in accordance with the support patterns reported in the literature on caregiving (Horowitz 1985).

At the onset of caregiving caregivers were predominantly unmarried and/or childless: 4 persons were single, 5 persons already widowed, 1 person lived separated, and 8 persons were married. Among the married were the 3 male caregivers, 1 woman whose husband due to his job stayed at home only on weekends, and, of course, the woman in our sample who cared for her husband; in the remaining 3 cases the husband did not object to the wife's caregiving activities. Eleven of the 18 caregivers were childless; 2 persons had only one (adult) child, and 5 persons had two (adult) children. Among those 7 persons with children, 5 persons also had grandchildren, but were not engaged in regular babysitting or related tasks.

Finally, at the onset of caregiving almost all caregivers (12) were either housewives or already retired, an active working status being the exception. Among the 6 persons who were employed were 2 male caregivers and 2 women caring for their employers. These two latter cases concerned small business enterprises in a "family-like" setting. There was not a single women (yet two men) in the sample being married and employed during the caregiving period.

Research on caregiving relationships usually centers around patterns of support for parents and spouse. As far as our cases are concerned one has to extend this range. Recipients of support included: 11 parents or parents-in-law; 2 spouses, 4 brothers and sisters-in-law; 1 aunt; 3 employers; 2 neighbors; and one client of a voluntary service. Thus, a quarter of all caregiving relationships were with non-kin. Demographic strain on family support in the city of Vienna may be part of the explanation (H0rl and Rosenmayr 1982): in this city no less than 41% of all people 60 years and over live alone and the proportion of the childless is also extremely high (36%).

Respondents recalled a total of 24 caregiving relationships because 5 persons reported more than one caregiving career. Three respondents cared for couples (parents-in-law, husband-and-wife employers, sister and brother-in-law); one man cared for his mother and mother-in-law, and another man participated in an

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earlier phase in caregiving for his mother and mother-in-law and was (at the time of the interview) engaged in care for his cancer-stricken wife. These multiple caregiving periods did not occur simultaneously, but occurred sequen- tially or overlapped. The situation which led to the elder's need for care could not be reconstructed satisfactory in all cases. In 8 cases "arteriosclerosis" was stated, in 6, respiratory and/or coronary diseases; in 5, cancer, in 4, conse- quences of accidents and in 1 case multiple sclerosis. To gain a more realistic picture of the caregiving burden we asked about the necessity of caring during the night and for about the occurrence of incontinence. Seven cases involved both; 2, only incontinence; 9, only nightly caring, and 6 neither nightly caring nor incontinence.

SOCIAL EXCHANGE MECHANISMS IN THE COURSE OF CAREGIVING

The retrospective accounts of caregivers can be grouped according to three (non-exclusive) aspects of social exchange.

(1) Gratitude

The elderly recipient of care was almost always described as deeply grateful and compliant. Compliance often bordered on submissiveness, and without doubt this served as a strong immaterial gratification especially for the female caregiver. She could maintain and reinforce her self-image as a truly helpful and competent woman who fears no strain.

Only two caregivers reported lack of compliance, i.e. the old person "refused" to be grateful in an appropriate manner. Presumedly this behavior was in consequence of an organic brain syndrome; it is also known that increasing reliance on compliance as an exchange resource may generate feelings of low self-worth and depression (Dowd 1975), possibly also aggression. Be that as it may, in these two cases the elder allegedly disparaged the caregiver's help; the self-definition of the caregiver's helping role was heavily challenged and feelings of exploitation became significant. In recollection the caregiving period turned into an almost unbearable experience, full of anger.

Caregiver: "The worst of it was the feeling of having been "used", the lack of acknowledgement of what I had done for her. Instead she only scolded all the time and treated me as if I were a servant..."

(2) Material Compensation

There is evidence that a number of caregivers received legacies, e.g. in one case inheriting an apartment. Such exchange processes are certainly underestimated and not sufficiently explored in gerontology because it is difficult gaining valid data. Nevertheless, certain circumstances of life histories of caregivers make it reasonable to assume that they received cash or other material advantages as

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"fringe benefits" out of caregiving.

(3) Enhanced Mutuality

Cantor and Little (1985) and Daatland (1983) suggest that those who are dependent on another may also be needed by the caregiver. Indeed, in some of our cases the old person functioned as a welcomed interaction partner. These caregivers were themselves threatened by feelings of loneliness because of low leisure and cultural aspirations and a restricted social network.

Caregiver: "At the time I was caring for my sister-in-law I was also working, but this didn't cause any changes in my life. My life was just dragging on. I didn't do badly with her, playing cards, etc. I 'm used to working ... I just organized myself."

FEELINGS OF LACK OF ALTERNATIVES

Individual elderly always explicitly favored the emergence of one caregiver (that is to say our interviewees). This desire was sometimes put forward in a rather demanding attitude, frequently accompanied by more or less subtle guilt- inducing remarks.

Caregiver: "My aunt insisted: "I will only go to you." (...) What could I do? I couldn't turn her out into the street - nobody would have done that .... I was the only person her entire life long who had ever bothered about her."

Caregiver: "They (parents-in-law, J.H.) said: "We've lost our son, now you're all we have"."

Important to this selection process were avoidance strategies employed by other members of the elderly's social network. They announced more or less directly that they were not fully eligible for this caregiving task.

Caregiver: "Everybody (in the family, J.H.) was pleased that I did it because there was no one else who could. The others all worked, didn't have any time, they turned to me - I simply did it, but the years passed without my having anything from them."

Caregiver: "They (other children, J.H.) kept out of it. They should have done more. She (other daughter, J.H.) came in between times but she wouldn't sleep at her mother's."

One might expect overt conflict to result from such defensive behavior. Surprisingly, reports by caregivers indicate this was only partially true. Non- caregivers advanced "objective" obstacles: working status, their own husband's negative attitude with regard to caregiving, competing demands by children and grandchildren, distant living arrangement, etc. In some cases, relatives praised the willingness to help of the prospective caregivers and underlined it as a most admirable personality trait.

Caregiver: '" 'How can you stand that!", said my niece who took over with my sister-in-law when I was away one night to attend the wedding of a nephew."

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In none of our cases did attempts to create distance as a form of coping really work. Even the temporary substitution of support (e.g. social services, assistance by other kin members) proved to be too stressful because the old person felt abandoned - even in the case of a short holiday trip by the caregiver - and this resulted in the creation of guilt-feelings.

Caregiver: "I had both the opportunity and the desire to enter into another marriage but my late husband's parents (whom she cared for, J.H.) wouldn't allow it because they needed me. Old persons are egotists and they kept me from doing it."

In most cases, however, caregivers did not even try to establish some kind of distance. They simply considered their engagement in helping activities as their way of life, not unlike the way working to earn a living is considered necessary as a matter of course by most people.

Caregiver: "That I was the one who had to take over her care came as no surprise to me. I was prepared for it and even happy to be able to stay in Vienna to care for my mother. My mother preferred it that way too. Anyway I was the only person in question when it came to someone to take care of her. For that reason I didn't have the feeling to begin with that too much was being required of me. In fact, throughout the whole time I never had the feeling this just can' t go on, the burden is too great for me - the care, the effort were for me a matter of course. My mother was always there when I needed her."

The excessive amount of time given, the physical strain (e.g. caused by lack of sleep due to nightly disturbances), and the psychological strain (often experienced just because the caregiver had to face the deteriorating physical and mental health status of the old person without much power to stop deterioration) were seen as a deplorable but unalterable blow of fate, nothing to reflect on in "philosophical" terms. Those caring for parents or spouses conveyed this attitude in a most pronounced way; others were more ready, in retrospect, to regret verbally the neglect of their own needs during their caregiving career.

Caregiver: "I couldn't live my life as I wanted it. I wanted to make up what I hadn't been able to do before. I wanted to go back and study languages and get further education in philosophy, psychology, and so on. I even wanted to audit classes at the university."

Substantial task sharing occurred in only 5 of the 24 caregiving relationships. Two cases involved old married couples who engaged in mutual self-help in addition to the aid of the outside caregiver while 3 cases involved men who complemented their wives' helping activities. In the remaining 19 cases the caregivers essentially acted alone.

Sole caregivers in our sample can be divided in two groups: those with sparse social networks to begin with and those with substantial but uninvolved social networks. Eight caregiving relationships had few opportunities to integrate other persons as the social network was very thin. One example is that of an un- married daughter without siblings who cared ten years for her frail mother who lived in the same household. Such isolated caregiving proceeded "undisturbed"

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as kind of a symbiotic relationship (Weakland and Herr 1979): the adult child seemed to be unable to distinguish between her own life and the life of her parent. She masked her inability to find a meaningful and autonomous life of her own by stressing the absolute necessity to care for a frail parent. Obviously, such a caregiver possesses qualities - as pathological as they may be - which are irreplaceable. Rosenmayr (1985) has characterized such relationships as governed by "hierarchical dependency", where strong feelings of guilt accom- pany enforced closeness. Under these circumstances children especially have to defend themselves against the self-directed aggressions which result from unfulfilled wishes to become more independent.

In 11 caregiving relationships a broader social network existed, but support for the principal caregiver was only sporadic or lacking altogether. Caregivers' retrospective descriptions of this situation usually go as follows: Albeit other kin existed, she was the only one the old person really wanted as caregiver, but then too other family members were not willing and/or able to be supportive to any significant degree.

Caregiver: "Others hold back from giving help because then they don't have any more control over their own time, to them it's a sacrifice, at least that's what I get out of what they say. For me it's a matter of course. I would even do it for a stranger."

Of course, in addition to more subtle socio-psychic dynamics there were also direct constraints and causes at work, foremost long-standing physical proximity, i.e. residing in shared households or other close living arrangements.

Caregiver: "I was the one who visited her in the hospital the most as the others didn't go out there enough, they just didn't have any loving ties to their parents, why I don't know. At any rate I had stronger ties because I lived door to door to her for so many years."

Assistance by social services was rarely used (only in 3 cases) and even then it failed. On the one hand, the availability of such services was rather low at that time (in the seventies or earlier, when most of the care was being given); on the other hand the usefulness of social services in their own case was negated. The failure of formal assistance only reinforced the caregiver's selfimage of being irreplaceable. One caregiver illustrates the reluctance with which some elderly viewed formal services:

Caregiver: "No, no, she had completely rejected any form of outside help right from the beginning. A home help two or three times in the week for two hours that's no real help. (...) For a while she had "meals on wheels" but she didn't like them and threw them out and especially after that thing with the salmonella (scandal, J.H.) she wouldn't even touch it."

Statements by caregivers concerning the lacking of alternatives should be judged critically, however. In tracing back caregiving careers we sensed that many caregivers tended to "monopolize" this social relationship. In a couple of caregiving careers there were concrete chances to develop some kind of external (formal or informal) assistance to alleviate strain. Interestingly enough, these

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chances were seized only reluctantly and only on a short-term basis. In some cases external assistance was explicitly rejected altogether as not being able to relieve the principal caregiver. Arguments centered around the other's lack of time, lack of "patience" with dependent elderly, or lack of motivation.

An interpretation might be that caregivers faced a situation which offered them a (last) chance in life to gain social recognition and augment self-esteem while "shaming" non-caring family members. In such a situation outside support is not likely to be accepted. A division of tasks which challenges the social relations involved may fail despite the practical burdens being lightened.

During the final stages, however, prolonged caregiving relationships were disrupted by such a grave deterioration of health status that informal caregiving competence was overwhelmed. Twenty-two (out of 24) old persons were transferred to nursing homes or hospitals, where they died within a short period of time: the stay generally lasted between only a few days and two weeks, in 1 case six months. The two exceptions were a husband who died at home and the current caring relationship.

CONCLUSIONS

The concept of social exchange can serve as a frame of reference for the analysis of caregiving careers. We have to distinguish, however, between two aspects of social exchange (Befu 1980): (1) the norm of reciprocity, and (2) the rules of exchange.

(1) Following Gouldner's (1960:171) classic statement reciprocity is a basic norm underlying and promoting social obligations:

"I suggest that a norm of reciprocity, in its universal form, makes two interrelated, minimal demands: (1) people should help those who have helped them, and (2) people should not injure those who have helped them."

Even if rewards and costs in the family are somewhat different, "reciprocity must function in primary group relationships, as well as others, but that rewards need not be returned immediately, or in the same kind." (Nye 1982:27). 1 When asked about motivation for caregiving, feelings of obligation prevailed. Such obligation stretches over the life cycle and was felt not only to parents or spouse but to some extent also to more distant kin or even non-relatives. Obligation based on the norm of reciprocity was regarded as a matter of course and certainly not as a result of specific decision making; the reciprocity structure is intrinsic to the relationship.

(2) The second aspect is concerned with the rules of exchange. "Rule of exchange (...) differs from the norm of reciprocity in that the latter refers to a generalized expectation to reciprocate, irrespective of what is being given or returned, whereas rules of exchange vary precisely on the basis of the nature of what is to be exchanged. At the same time, rules are dependent on the norm, since it is the norm which supports and reinforces execution of rules of ex- change." (Befu 1980:203).

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The rules of exchange in our cases turned out to be the elderly's compliance, i.e. expression of gratitude, financial donations, and mutual satisfaction in the relationship. It should be noted that even in situations defined as asymmetrical like caregiving there is an obvious desire for social exchange on both sides. In the case of the caregivers the existence of exchange patterns helped them to perform caregiving tasks without excessive personal costs. On the other hand for the elderly to regard the help received merely as a child's long-term reciprocal obligation was unacceptable to the caregiver. An inability to reciprocate more or less immediately obviously implies an inferior status difficult to tolerate. Consequently, the elderly will attempt to rebalance the relationship (Dowd 1975:589). Care that one has "paid" for (literally and/or symbolic) and for which the motive of the caregiver can at least partly be attributed to self-interest will be easier to accept than care motivated by sheer altruism.

Just as positive and negative feelings can coexist in the same relationship (Troll, Miller, and Atchley 1979), caregivers' feelings of obligation coexisted with a distinct feeling of being captured within a given social situation. This produced stress and strain, yet seemed to be virtually unchangeable. In other words: the caregivers were (or believed themselves to be) at the onset and in the course of the care confronted with a socially structured reality which more or less forced them into a helping role whether they liked it or not. The sense of duty and obligation prevented any serious attempt to alter the situation the caregivers were thrown into. Those few caregivers attempting to gain more personal independence were plagued by guilt-feelings which led to quick abandonment of such attempts. Furthermore, undivided responsibility for a dependent elderly must also be regarded as a possible way to gain rewards which enhance self-esteem. The self-concept of a proficient helper was rein- forced partly by the elder's compliance and partly by social acknowledgement by significant reference group members. On the other hand, caregivers were fully aware that caregiving means to a great extent the exploitation of one person's resources and produces heavy physical and psychological strain.

Despite all necessary methodological caution against retrospective life history studies, evidence presented here has affirmed that "looking through a glass darkly" (Johnson 1976) is a useful corrective to the "observable". It was an astonishing experience to hear how precisely the respondents remembered (or believed themselves to remember) nearly all of the chronological and other details involved. This intense recall alone demonstrates the subjective impor- tance of the experience, since routinized everyday life is not easily framed into a logically structured report. Already Geiger in 1931 claimed that "adventures are told - the monotonous working-day remains speechless." Caregiving may not exactly be an adventure, but in many cases it is a subjectively well-remembered highlight during an otherwise predominantly uneventful and predictable life.

Stressful as it may have been, caregiving as a special life event may at the same time be a welcomed opportunity to prove that someone should be elevated out of the mass; thus biography (as a structured self-image) can play an

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important role for the presentation of identity through the claim to be a real expert in a given field o f experience,

NOTES

* This research was part of a larger study supported by the "Stiftung Volkswagenwerk". An earlier version of this paper was presented at the XIlIth International Congress of Gerontology, New York, July 12-17, 1985. 1 For a different view ef. Rosenmayr's (1987) concept of "overbalancing" as a purposeful and processed disequilibrium in psychosocial exchange, where more is given or yielded than taken or assimilated.

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Institute of Sociology, University of Vienna & Ludwig Boltzmann Institute for Social Gerontology and Life Span Research