Home Care workers found my father, Maurice, on the floor by his bed when they went in tomake his breakfast one morning in September 2004. No formal diagnosis was made, butwe suspected that he had probably had a stroke. The idea made sense, since Dad hadangina as well as the dementia with which he'd been diagnosed three years earlier.Whatever the cause, there was no doubt that his cognitive abilities had also been affected.His performance on diagnostic tests had plummeted. The conclusion was predictable: hecould no longer live safely on his own.

When we moved him into a specialist home, the staff asked me to make up a `memorybox' for my father. Something to contain family photographs and other small objects thatmight trigger memories and help to keep his mind active. So my husband helped me getdown the boxes stored in the loft of the bungalow that my parents had bought, newly built, inthe 1950s, and I started to look for photographs that would mean something to my fatherö

and to me. There werepictures that I was par-ticularly keen to find:some of me as a baby inthe bath and one of mymother standing at thewindow. Taken fromslightly behind, it showedher looking at the worldoutside. `Wistfully' washow I'd come to think ofit, because the move tothe bungalow had ledto her giving up her jobas a telephonist in Leedsand becoming a house-wife, cut off from friends,

A place like this? Stories of dementia, home, and the self

Ann VarleyDepartment of Geography, University College London, 26 Bedford Way, London WC1H 0AP,England; e-mail: a.varley@geog.ucl.ac.ukReceived 24 July 2005; in revised form 6 January 2007; published online 20 July 2007

Environment and Planning D: Society and Space 2008, volume 26, pages 47 ^ 67

Abstract. The connections between home and the self have been the subject of debate in recent years.As a metaphor for a bounded and stable identity, the ideal of home is regarded as dangerous bytheorists who oppose a politics based on nostalgic appeals to unity and privilege. Home is criticisedas an exclusionary and depoliticising space. Scholars such as Iris Marion Young and Geraldine Prattargue, however, that we should be wary of rejecting home, since the material space of home providesvaluable support for individual and collective narratives of identity. In this paper I reflect on thesedebates in the light of my father's experience of dementia and the move from his own home intoresidential care. I examine alternatives to the account of identity on which critiques of home asexclusionary space are based, such as narrative identities and Jessica Benjamin's intersubjectiveapproach to the self and the concrete other.

DOI:10.1068/d3105

her life revolving around my father and me. There were also two large prints, both of themnight scenes taken by my father. One focused on a street lamp shining through trees ontothe house where he'd grown up; the other, the canal docks in Leeds, the industrial past nowsubmerged under waterfront `apartments'.

None of these photographs was to be found. At some point my father had had a clear-outöprobably when, twelve years after my mother's death, he'd remarried and enjoyed abrief few years with my stepmother. The old black-and-white photographs had mostly gone,but he had kept thousands of colour slides, mostly from holidays he'd taken while he was onhis own. Slides of flowers, landscapes, a steam fair, Alpine villages, coach tour companions,and yet more flowers.

I raged at my father in his empty home, furious at the loss of the photographs and, withthem, it seemed, part of my childhood. How could he have thrown out those images whilekeeping so many others? I felt as though he'd destroyed my memories as well as his own,and knowing how unfair I was being didn't make things any better.

In one of the dozens of boxes of slides, however, I came across one that took meaback. It was in a series from Austria but unlike anything else I found: a painting by theseventeenth century Dutch painter Pieter de Hooch, famous for his domestic interiors.

Reproduction of de Hooch'sA Dutch Courtyard (photo-graph taken by the author'sfather).

48 A Varley

I don't know what this slide was doing there. Perhaps a reproduction hung in hishotel and he liked it so much he took a photo. Finding the slide took me aback becauseI particularly like de Hooch's paintingsöespecially the ones of women and children

at home in Delft, which I use inteaching about the gendering ofdomesticity. So to find that, of allthe paintings my father could havephotographed, it was this one, wasdisconcerting.

In the end I managed to findenough family photos for Dad'smemory box. Some of them hadbeen shoved into piles of possessionsstacked up in old cupboards in thegarage: a large photograph of hismother and father I'd never seenbefore; a plastic wallet with picturesof my grandfather in East Africa;photographs of Norway, where he'dtaken my mother touring on hismotorbike instead of buying heran engagement ring. I got copiesmade and hung them in his room.He doesn't seem to look at them.

^ ^ ^

Home is an ambiguous concept (Blunt and Dowling, 2006; Duncan and Lambert,2004; Williams, 2002; Young, 1997). It is a space of belonging and alienation, desireand fear (Blunt and Varley, 2004, page 3). Yet, Iris Young (1997, page 135) hasidentified a strand of thinking in feminist theory which rejects the idea of home as``totalizing and imperialist''. Understanding home as a metaphor for a unitary iden-tity, writers such as Bonnie Honig (1994, page 570) urge us to resist the ``seductionsof home''. Since the unitary self is founded on the exclusion of difference, a feministpolitics that is alive to difference should shun the desire for home as a spaceof unquestioned and unquestioning privilege. Instead, Teresa de Lauretis calls forfeminism to position itself in a place that is both conceptually and emotionally other,a place of risk rather than certaintyö``leaving or giving up a place that is safe, thatis `home' '' (de Lauretis, 1990, page 138).

Feminist critics are not alone in their rejection of home. An emblem of ` regressivenostalgia'' and ` reactionary nationalisms'', home is frequently ` dismissed as an embar-rassing backwater of unemancipated feelings or actively attacked as a breeding groundof repressive and oppressive politics'' (Bammer, 1992, page x).

In geography, it is now rare to find a straightforwardly idealistic account of home,and most geographers writing about home acknowledge its ambiguity.(1) The morenegative accounts echo the charges outlined above. Maria Kaika (2004) challenges

(1) For recent reviews of work on the subject see Alison Blunt (2005), and Blunt and Robyn Dowling(2006), Mona Domosh (1998), James Duncan and David Lambert (2004).

Stories of dementia, home, and the self 49

the reactionary political implications of constructing the home as an autonomousindividual utopia through the exclusion of undesired social and natural elements. Sheseeks to expose ``the dysfunctionality of the private spaces where blind individualismcan be practised in isolation'' (page 283). Kaika condemns the ideal of domestic safetyand familiarity as premised on keeping `the other' outside, and calls for an end to theselfishness and alienation fostered by home. Louise Crabtree (2006, page 717) similarlywelcomes the ` disintegration of the myth of the autonomous citizen living in a privatehouse.''

In a recent review of the concept of `private/public', David Sibley (2005) presentsthe privateöthe home and spaces made home-like for the powerful by the homoge-nisation and regulation of public spaceöas unremittingly exclusionary. His examplesinclude panic rooms, gated communities, and community policing and the excludedothers, the homeless, drug abusers, the mentally ill, and street children.

These examples portray the private home as the space of the bounded, excludingself. This understanding of `private' comes from the Latin `privatus ', translated as``withdrawal from public life'' (Sibley, 2005, page 157, citing Williams, 1983). Yet,`privatus' also has other connections: with `privation', for example (Williams, 1983,page 242). In this sense, the private is the realm of the ``not fully human'' (Arendt,1958, page 38). In the classic dualisms of Western thought, the domestic privateis associated with the other. It signifies the everyday, bodily reproduction, depend-ence, and the feminine. As such, it is treated as an essential natural foundation forcivic life that is otherwise of scant theoretical or political interest (Pateman, 1988).Home can also be a space of confinement: the excluded other is not necessarily `outthere'.(2)

Home is the space, then, both of the self and of the other; but this ambivalence isdenied by too insistent a focus on the exclusionary home. Such a focus can perpetuatethe othering of home. Yet, it is over twenty years since feminist scholars started tocontest the omission of domestic space from the geographical agenda, in an effortto render the other visible. In doing so, they complicated the account of home, as aprivileged space for some but as a workplace or site of fear and oppression forothers.(3) Public and private, they also argued, are linked: the private might `invade'the public, but so too can the public `invade' the private.(4) Criticisms of home as anoppressive and apolitical space provoked a response from black feminists who arguedthat such criticisms emerged from a position of privilege, and that home was a spaceof safety and resistance for blacks in a racist society (hooks, 1990; Smith, 1983).(5)

Critiques of home as exclusionary space can themselves, then, be founded on and fosterexclusion.

^ ^ ^

(2) Robert Wilton (1998, page 182) notes that group homes such as AIDS hospices may be toleratedby the community on condition that residents are not visible from outside.(3) Sibley (1995, page 94) suggests that his position is a reaction against ``too cosy'' an account ofhome in the literature; yet, the critique of home by feminist scholars in the 1980s had been clearenough to incur a fierce denunciation of academic feminists for allegedly treating ` millions ofordinary women'' as ` stupid'' for valuing the home (Saunders, 1990, page 308).(4) Kaika (2004) cites an example of private homeowners' colonisation of public space discussed byKay Anderson and Jane Jacobs (1999), without noting that these authors paired that example withone in which a public redevelopment authority sought to evict local residents without providingalternative accommodation.(5) See also Honig (1994, pages 582 ^ 583) and Stephen Legg's (2003) paper on women's home-basedparticipation in the Indian nationalist movement.

50 A Varley

Shortly after Dad was diagnosed with Alzheimer's I had taken him for a day out tothe coast. A dementia diagnosis means you lose your driving licence, so he had given mehis car, explaining the loss of his licence in terms of failing eyesight. On the shore, in thesunlight, he looked happy. He showed off his skill at skimming pebbles over the water: five,six bounces or more. I thought ` I have to fix this image of him in my mind''.

I repeated those outings as often as possible. Skimming pebbles, Dad could live in thepresent moment, though with an echo of past pleasures. But in time he started to becomeincreasingly anxious about getting back: back to the car, back on the road home. He wouldwalk ever shorter distances around the curve of the bay before wanting to turn round, and Ihad to resort to manipulating him: trying to get him looking for pebbles to skim, to keepopen a space for him to enjoy himself before his anxieties crowded back in.

For years he'd been talking about taking another holiday in Norway. Piles of travelbrochures weighed down his coffee table. I booked a week in Norway, to give him one lastholiday in the country that had meant so much to my parents. It never happened: instead,Dad ended up in hospital after fainting at the doctor's, showing how unrealistic I'd been.

My father still kept talking about going on holiday, but he'd started to worry that hehad no money. His pension was paid into his bank account but now he only rememberedpensions as something you collect from the post office. I put notices up in his kitchenexplaining that he did have plenty of money and how to get hold of it, but he soon stoppedseeing them. He started to do the rounds of his bank, the post office, the job centre, thebuilding society, even his insurance company, telling them he had no money and asking forhelp. They would ask him for a relative's phone number and call me for reassurance.

Most of these visits entailed a two-mile round trip to Rothwell, the nearest small towncentre. Despite his angina Dad thought nothing of walking there to go to the shops andbank. He also started taking daily or twice-daily walks along the canal towpath or in thegrounds of an old estate, now a golf course. Walking seemed to calm him; but he took topicking up golf balls that had fallen outside the driving range. He collected thousandsösomany that the management began to accuse the grounds staff of stealing them. We tookcar-loads back to the club, but Dad grew increasingly defensive about his collection, hidingthe golf balls in his garage. I went in one day to clear them out; when he realised what Iwas doing he shouted at me and pushed me out. I screamed back at him. Not long afterthis, the bank manager called to say that Dad had also been physically aggressive to himand that he had shouted at the counter staff, accusing them of stealing his money. I felt myfather's humiliation as, in turn, the psychiatrist and the bank manager both read him theriot act about unacceptable behaviour.

The doctors prescribed medication to reduce Dad's aggression, and this seemed to givehim some release from his anxiety. The phone calls from concerned strangers ceased, tomy relief. But with this lessening of anxiety came a change in my father's movements. Hestopped going to Rothwell. Instead he would cross the road to the small supermarketopposite his home to buy what he needed, often several times a day. The shop assistantsor neighbours tried to help him when, after paying, he started to go back round the aislesagain. He still talked about going out for his walks but we weren't sure whether to believehim: there were no more golf balls appearing. Bit by bit, my father's world was shrinking.

One day, I heard him set out to go to the shop. I waited to see him go down the path,but he didn't appear. As soon as he'd stepped outside he must have forgotten what he wasgoing for. He came back in a minute or so later, looking a little puzzled.

^ ^ ^

In her famous essay on the ` politics of location'', Adrienne Rich (1987, pages 211 ^ 212)recounts how she and a childhood friend would write to each other, extending theaddress to ` The Continent of North America, The Western Hemisphere, The Earth,

Stories of dementia, home, and the self 51

The Solar System, The Universe.'' Looking back, she asks uneasily why she had seenher house as the centre of a series of expanding circlesöwhat her sense of being ` at thecenter'' meant. It was questions such as this that led to the rejection of `home' infeminist narratives and theorisations of identity.(6) Such narratives often employ thefigure of `leaving home', suggesting, as Geraldine Pratt (1998, page 19) observes, that` it is only through leaving home that an understanding of the complexity of sociallocation is attained.'' They are largely young people's narratives. Less attention is paidto how the meanings of home change as people grow older (Blunt and Dowling, 2006,page 113). Doreen Massey (2001, page 459) suggests that old age and infirmity bring` a drawing-in of physical spatiality... clos[ing] down the spaces of older people's lives.''The same process can refocus their narratives of identity.(7)

This does not necessarily entail retreat to a space of familiarity and comfort. Inwork with older men in urban Mexico, we learned that they felt out of place at home,as their identity was still rooted in a breadwinning role from which they had been orwere being dislocated. They complained of being unable to find a space or time to beby themselves in the house. Men who owned a car reported that they would go outnowhere in particular, driving around just to find some privacy (Varley and Blasco,2001). Graham Mowl et al (2000) report similar findings for the UK.

Contemporary interest in mobile subjectivities treats identity as a search (Rapportand Dawson, 1998). But sometimes movement is not about a search for but an escapefrom identity, or an escape from the dissonance between where one is and where onewould like to be, but without any specific destination. It may follow no prechosenroute, or a route so familiar that it can be followed almost without thinking.

Thinking about identity in terms of exile or migration, however, again risks priv-ileging certain groups of people as ` bearers of a particular kind of existential truth'',and this just reverses the valorisation of existing binaries (Dawson and Johnson, 2001,page 320; Pratt, 1999, page 155). One way to thwart such reverse valorisation is to focuson cognitive, rather than literal, movement/dwelling (Dawson and Johnson, 2001).If home is where we know ourselves best, we can be at home in movement and travelin the imagination. Such a definition allows us to value home without endorsinga reactionary politics and to recognise ` the universally affective power of home''(Rapport and Dawson, 1998, pages 8 ^ 9). But it overlooks the extent to which, forsome people, home is ` also a material reality, a territorial entity fixed by specifichistorical and geographical co-ordinates'' (Basu, 2001, page 346). If identity is asearch, ` is not to search, in part, at least, to seek that which is felt to have beenlost?'' (page 335).

^ ^ ^

If I had been unwilling at times to acknowledge the implications of my father's illness,he was unable to do so. Loss of memory offers some protection against its own effects, butothers have to step in to fill the gaps in what you can doögaps that you don't recognise.You stop remembering (how) to do some of the routine things that are part of everydayexistence. Like preparing foodöDad had been proud of his ability to cook a meal, but nowhe took to going to the fish and chip shop every dayöor doing the laundry. After I found amouldy sheet in the washing machine one day, I knew I couldn't put off dealing with theproblem any longer. I'd offered to help before, but he always said he'd washed and ironedjust the other day, or that he'd do it after I left. Contradicting him only provoked him.

(6) Particularly Minnie Bruce Pratt's much-cited (1984) account of the different homes she hadoccupied over the years in relation to her growing awareness of her social positioning.(7) Graham Rowles (1978, page 183) argues, however, that the notion of ` a progressively shrinkinggeographical lifespace'' in later life is ` a demeaning oversimplification''.

52 A Varley

I waited until Dad was reading one morning, then went quietly into his bedroom andstripped the bed. If he got upset, I'd at least be able to present him with a fait accompli. Thenext step was the tricky bit: the linen was stored in the room where Dad was sitting. I heldmy breath as I went in and pulled open the drawers, which stuck slightly. To my relief, Dadsaid nothing. He paid no attention to what I was doing. I realised with a shock that hedidn't see me. I was simply doing what the women in his life had always done.

It was only when Dad spent two weeks in hospital in autumn 2002 that we were able toarrange for Home Care to start coming in each day to make sure he took his medication.In time the morning visit became two visits a day and eventually, after he lost the ability tomake the cold meat sandwiches he'd been virtually living off for some months, the womenfrom Home Care also started to shop and make his meals for him.

To my surprise, Dad accepted these visits, thinking it was the ` district nurse'' callinground; but I found them difficult. I felt exposed to judgement: of the state of the house; ofmy living in London; of my fancy job ... .This wasn't paranoia. The neighboursöinitiallyhelpful and sympatheticöhad vented their anger at me on the phone one night. Didn't Irealise how ill my father was? What was I doing leaving him to roam around the streets allday? He was my responsibility. Clearly, the right place for him to be was at home, inside,and the right place for me to be was there caring for him. Sobbing in humiliationafterwards, I speculated bitterly that they wouldn't have said all this had I been a man.Women's employment seemingly counted for nothing still.

In the different care homes I visited while trying to find a place for my father, most ofthe carers are local white or South Asian women, but there are also a few men and someWest African women. Virtually all the residents are white; some, like my father, arechildren of people who worked in Britain's former colonies. I think of all I've read aboutglobal migration and wonder what the migrant workers think of their job here. One womangiven the task of showing me around said next to nothing and simply turned her back onme as soon as we got back to reception; but she suddenly melted and hugged one of theresidents affectionately. Visiting my father one afternoon, I saw one of the care assistantsask a resident who had started up a high-pitched demand to be taken to the toilet to wait alittle, please, as they were busy preparing tea. But the whining went on and I saw a suddenlook of disgust cross the carer's face before she sighed and did as she was asked.

One or two of the women residents sometimes go round the home with a duster,cleaning'. One day, Dad wanted to use the toilet and I walked with him down the corridor.A woman opened the door and then stood there, seemingly unsure of what to do next. Shesmiled uncertainly at us and then took out her duster and started polishing the door handle.

^ ^ ^

It is not uncommon to read optimistic, even celebratory, accounts of the blurring ofboundaries between home and work. Liz Bondi and Mona Domosh (1998, page 285)argued that in the UK and USA, and particularly for middle-class women, the ideol-ogy of separate spheres had mostly disintegrated. More recently, the editors of a bookon the relationship between reproduction and production wrote that we are witnessing` the complete breakdown of the barriers between worlds, such that the domain ofwork and the domains of home and leisure are indistinguishable from each other''(Mitchell et al, 2004, page 3).

The resilience of gendered spaces and ideologies is, however, also documented.Despite profound changes in their configuration, they can persist in translated form.One example is the `gendered loop' in which the labour of working-class and racialisedor immigrant female labour is substituted for some of the reproductive labour ofmiddle-class women in employment (Anderson, 2000; Gregson and Lowe, 1994; Pratt,2004, page 167). For Linda McDowell (2006, page 844), ` the changing nature of care

Stories of dementia, home, and the self 53

and the spaces in which it is given/exchanged and paid for'' constitutes an ` epochalchange'' in class and gender relations in Britain and elsewhere.

Reflecting on the strategies used by a Filipina domestic worker to stake a territoryfor herself within her Canadian employers' home, Pratt (1999, page 164) argues thatmarking boundaries may be as constructive as blurring them. Mary Romero (1992,pages 147, 152) observed that Chicana domestic workers in the US prefer to work withseveral different employers and to minimise contact with any one of them. In the UK,Julia Twigg (2000) notes that the care workers she interviewed preferred home-basedcare with a variety of clients to institutional work, partly because care staff in resi-dential homes are working with the same people in the same place all the time.They can, however, go home at the end of their shift, whereas coresident carers cannot.Does the lack of distinction between the space of home and the space of caringconstitute one possible explanation as to why, as Rachel Maidment et al (2005) find,coresident carers are more prone to anxiety than other informal caregivers (see alsoWilliams, 2002, page 147)?

Paid home-based care erodes the distinctions between formal and informal careand between public and private via an ``institutionalisation of the home-space''(Milligan, 2003, page 462; Twigg, 2000). The distinction is maintained, however, inso-far as care workers' employment is regulated; but regulation may clash with clients'needs and undermine workers' ability to provide care in the way they judge best(Ungerson, 2004). `Cash for care' schemes blur the distinction further, since someinvolve deregulation. Such schemes may empower the care user but not the workers.Where they encourage the employment of friends or neighbours, they can lead toencroachment on the worker's space and time, as users expect additional servicesto be provided, gratisöphoning at night to ask for help, for instance (2004,page 204). To resist such abuse, care workers may find that they need to reinforce theboundaries between themselves and their employers.(8)

^ ^ ^

My relationship with the women from Home Care was not, as it turned out, an easy one.There were unhelpful rules and small gaps in and between the health and social servicesystems that threatened to make the whole care package collapse. Either people broke therules creating these gaps or relatives stepped in to fill them. Home Care workers were notallowed to touch the medication, for example. Social Services had not yet registered a needfor assistance with shopping, so how were the medicines (dispensed weekly) to get from thechemist's to Dad?öhe couldn't be relied on to remember to collect them himself. How werethe chemists to get the prescription in the first place? After the medication was changed bya hospital specialist I phoned the doctors' surgery to check that the change had filteredthrough; the receptionist told me frostily that their responsibility only extended as far asmaking out the prescriptionönot taking it the fifty yards to the chemist's.

Fortunately, these were minor irritationsöin the end, people helpedöbut there werealso more serious problems. The angina medication seemed to have little effect, and to Dadeach day's discomfort was a new experience. Unable to compare his symptoms with whathe'd felt before, he was sometimes very distressed in the mornings. He also came to lookfaintly blue around the mouth on a regular basis.When the Home Care workers saw thesesymptoms, they were required to call for help. Already facing regular, sometimes daily,unscheduled visits from my father, the doctors were perhaps a little tired of him; theysimply insisted that an ambulance be called. Dad was hospitalised more than a dozen

(8)Massey (1995, page 496) discusses the reinforcement of boundaries as a strategy for resisting theencroachment of work into home space and time. In relation to care work within the home, it mustbe noted that the potential for abuse cuts both ways (Wiles, 2003, page 197).

54 A Varley

times with suspected heart attacks, although the ECGs always, on every occasion, showedthat these were false alarms.

These visits to hospital caused great distress. A pattern soon became apparent. Initiallygrateful for the care he was receiving, Dad would soon become confused by all the waiting:to see the doctors, to get the results of his tests, to have yet more tests taken. He alwaysthought no-one was paying any attention to him, and he didn't know why he was thereanyway. He became more and more agitated and would finally either discharge himselfor simply walk out. He wouldn't wait for hospital transport but walked home along a routehe had, fortunately, known for many years and could therefore remember. It was five milesto his home, and he walked those five miles in the cold of winter and, still wearing hisheavy woollen jacket, the hottest days of summer.

Most of the hospital visits lasted less than a day; at most, Dad would stay the night.On only one occasion, early on, were we able to persuade him to stay in hospital for anylength of time; but he needed constantly reminding where he was, and why. One nighthe disappeared from the ward. Security staff were sent to find him and bring him back.He resisted and lashed out, hitting one of the nurses as they struggled to give him a sedative.

My aunt and uncle went to visit Dad one afternoon. Afterwards, they told us thathe had been terribly distressed to see them. He couldn't find his wallet, and he wouldn'tbe able ` to pay his share'' ... . He was on holiday in North Wales with them, in a hotel,and he didn't have any money to pay the bill. At other times, he thought we were in a pubon the other side of the city.

In hospital, Dad collapsed, mentally. At home, he was never this confused. He was ableto manage on his own, with help, for another two years. Meeting him on one of his dailywalks, you wouldn't immediately have known there was anything wrong. It was only if youspent time with him that you'd realise he was repeating himself, or that he didn't rememberseeing you just the day before.

^ ^ ^

The rejection of home is informed by a critique of identity derived from poststructur-alist approaches to the subject and from Lacanian psychoanalysis. Lois McNay (2000,page 3) questions the extent to which constructionist and Lacanian accounts of identityformation have become generalised in feminist and social theory. She fears that anemphasis on the discursive construction of the self leads to overoptimistic accounts ofthe extent to which identities can be refashioned (pages 74, 162). Felicity Callard (2003)suggests that the influence of such approaches within human geography has promoteda misleading view of the psyche as malleable and responsive to ` discursive interven-tions'' (page 304). The corollary is an aversion to the possibility ``that individualsmight need to be theorized in terms of impotence, the loss of agency, or the lack ofprogressive transformation'' (page 307).

The celebration of indeterminacy and instability in poststructural accounts of theself contrasts with the unequivocal manner in which unitary identity is rejected(McNay, 2000, page 28). McNay seeks a more generative approach to the self, onethat does not become mired in the opposition between identity and nonidentity butmediates between them. The individual's capacity to act requires some degree ofcoherence in the conception of self, she argues, suggesting that there are limits to themutability of identity.(9)

One option is to pay more attention to temporality. Insofar as the self has unity, itis a dynamic unity, a ` constancy through and within change'' (page 87). McNay drawson Paul Ricoeur's idea of narrative identity: we configure events into a narrative in the

(9)David Conradson (2005, pages 105 ^ 106) and Caron Lipman (2006, page 622) advance similararguments concerning the emotional geographies of the self.

Stories of dementia, home, and the self 55

light of stories provided by our culture, and constantly reinterpret them, becoming ` thenarrator of our own story without completely becoming the author of our life'' (Ricoeur,1991, page 437, emphasis in original). The story is never fully coherent. As Seyla Benhabib(1999, page 353) puts it, ` identity does not mean `sameness in time' but rather the capacityto generate meaning over time so as to hold past, present, and future together.''

The narrative model of identity envisages the relationship with the other as anongoing process and does not assume reconciliation (McNay, 2000, page 102). It offersone account of a coherent self that is not predicated on the exclusion of difference.Jessica Benjamin (1988; 1995; 1998) focuses explicitly on the question of how the selfcan relate to an other without assimilating or excluding it. She does not reject thecritique of identity, but asserts that the subject as a political or epistemologicalcategory does not fully correspond to the self as a ` locus of subjective experience''(1995, page 12). Taking issue with Judith Butler's (1990) rejection of the ` doer behindthe deed'', Benjamin argues that ` a self can be nonidentical, and yet contain a state,express a feeling, identify with or assume a position ... a kind of `identifier behindthe identification' '' (1998, page 87). For Benjamin, the main difference between herposition and that of Lacanian theorists, however, is her emphasis on the ` concreteother'' (page 82). The self, faced with the other, responds either by idealisation or,identifying it with something feared within the self, by repudiating and excluding it.But the story does not stop there, since this projected other is not the external, concreteother. The key to understanding how we can recognise the concrete other lies inDonald Winnicott's concept of ` destruction'' (page 90). Negation of the other, in theform of silencing, exclusion, or violence, conveys the message ``you do not exist forme''.Winnicott (1971, page 91) called the process ` destruction'' because the other mightnot ` survive'', but retaliate, withdraw, or capitulate. The outcome does not depend onthe self, underlining ``the indeterminacy and irreducibility of the other for the subject''(Benjamin, 1998, page 91). If the other does surviveö` can be moved but not coercedby us''öhe or she can be recognised as external (page 92).

Benjamin calls the process of subject formation through recognition of the other'sexternality ` inclusion''. She notes the absence of this countervailing concept fromButler's argument that subjects are formed through exclusion, and asks on whatgrounds the call to respect difference can be articulated without an ideal of inclusion.But inclusion also demands awareness of commonalities: ` the condition for the otherbeing recognized is that the other also be a subject, an ego, capable of negating'' (1998,page 100). We have an ethical responsibility to the other subject to act as their otherand survive their negation (page 99). These arguments have been described as sufferingfrom an ` untenable hopefulness'', making recognition an idealised conclusion ratherthan part of an incessant struggle (Butler, 2000, pages 283 ^ 285). Benjamin suggeststhat her earlier (1988) work, which noted that breakdown of recognition is inevitable,may not have made this point forcefully enough. She underlines that at best recognitionalternates with exclusion/assimilation and that, since it only emerges from the survivalof negation, recognition cannot exist without destruction (page 97; 1995, pages 22 ^ 23;2000, pages 298 ^ 299).

^ ^ ^

Dad's distress during these visits to hospital, together with the vision of his having a heart-attack by the side of the road, eventually led me to protest about the calls to the emergencyservices. I didn't want him to have a heart attack at home either; but I felt that what washappening was increasing his chances of suffering an attack. And if my father wanted sodesperately to be at home, then that was where he should be. Not that he was necessarilyhappy there. Although he refused all invitations to organised social events, or to visit me

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in London, he would instantly strike up a conversation with people at other tables when wewent out for a meal. His loneliness at homeöaggravated, perhaps, by the memory thatboth my mother and stepmother had died thereönonetheless seemed to be overridden byhis need to feel safe. Despite the dangers, then, I decided to do what I could to ensure thathe was able to stay at home as long as possible.

My concern grew when, during one visit to the hospital, Dad assaulted two nurses andthe staff called in the duty psychiatrist. The idea of his being `sectioned' was a nightmare.He would not be able to understand why he was being prevented from going home. So, asfar as I was concerned, the less contact Dad had with the hospital, the better.

This was not the approved response. How could I not want my father to receive expertcare? To make matters worse, hospital staff refused to believe that the very confused oldman they saw could still be capable of living on his own. (Fortunately, Dad's psychiatricspecialists were willing to take more risks: they had helped keep another man going in hisown home despite its increasingly alarming state of disrepair.) And caring relatives don'tquestion professional wisdom. After my incomprehensible attitude led to a row with onenurse, I wrote to the hospital explaining the situation and saying I wasn't prepared toexplain it in person again. Ironically, this led to the tables being turned a few months'later, after Dad had collapsed. I was waiting for the train to London when the hospitalcalled to say they were discharging him. I learned later that my letter had made themworry that I'd `lawyer up'.When I protested that they couldn't discharge him until we hadfound a suitable care home I was told ` you can't put him in a home just because you feellike it.''

When we did move him, Dad behaved in a deeply disturbed fashion for weeks, to theextent that I eventually had to find another home for him. Within an hour of arriving hewas heading for the door. He hardly slept but spent half the night outside: no sooner hadthe staff got him in one door than he'd be out the other. He tried to persuade other residentsto join him in his efforts to get out. His talk was all of moving things. In hospital he'd seensnow, and trains, in the ward, but now he saw boxes and shelves to put them on or takethem down from and papers to pick up and ` things'' to put inside other things. He startedmoving furniture and the TVaround in the lounge, leading one of the other residents to hithim. I wondered if his obsession with moving things was about packing to go home: if I leftthe room for a minute, I would come back to find him wearing my coat, ready to go.

Dad hasn't stopped wanting to go home. My ideas of taking him out when I visit haveturned out to be pipe dreams: I can't torment him by getting his hopes up that I'm drivinghim home. That's what he thinks I'm there to do every time I visit. He's told me, tearfully,how much he loves me, and how grateful he is ... . His conversation turns endlessly back tothe same topic and sometimes I just can't find a way to distract or calm him.We've spenthours going through the same exchange: ` Let's go home.'' ` No, Dad, we can't do that.''`Why not?'' ` Because you're not well enough.'' ` Let's go home.'' Sometimes he swears andshouts at me that he doesn't care what I'm doing: he's leaving right now. He gets as faras the door or just into the corridor and then he comes back, grabbing my hand, crying.` I'm pleading with you.'' And then he gets angry again; shouts at me again; leaves againand comes back again to start all over again.

He's not alone. As one of the staff said to me, ` they all want to go home.'' Early on,when Dad was most focused on getting out, he would walk around with a woman calledMary, looking for an exit. I'd find them hovering by the door when I arrived, and I'veseen Mary collapse in hysterical protest when the staff stop her slipping out. At the end ofone visit I wasn't quite sure that the door had shut behind me. I moved away just a few feet,in case Mary was following me out. She was, so I put my arms around her while I calledfor the staff. She slapped me and yelled ` you rotten pig!''

Stories of dementia, home, and the self 57

Dad's alliance with Mary, however, was purely tactical: he would ignore her when Iarrived. One afternoon I sat down with him and, as usual, his eyes filled with tears as hetold me he was feeling ` chesty''. Mary pushed past him and I heard her sniffy aside to oneof the other women: ` he's always crying, that one.'' I glared at her and then felt ashamed.

The longer I spend in the home the more I sense a lack of empathy between theresidents. At first I found it a little shocking; but who would want to recognise their ownaffliction in others' craziness'?

^ ^ ^

If rejection of home is premised on a particular view of the exclusionary subject, otherapproaches to theorising the self may allow us to think about home in ways that do notbecome trapped in the binary of exclusionary or idealised space. Benjamin (1998,page 104) reminds us of the ` fear, pain, loss'' that lead to exclusion; but she observesthat exclusion is, in a sense, an ` illusion'', since the excluded other is an internal object.As Sibley (2005, page 158) puts it, ` anxieties about threatening others can never beerasedöthey are only displaced'' (see also Kaika, 2004, page 273). This paradoxicalinternal alterity is accompanied, however, by another paradox: that only inclusion canallow otherness to be external.(10) Benjamin thus describes the relationship of the self tothe concrete other in terms of an ongoing tension; an ability to tolerate ambivalence,` to disidentify with any one story as the whole story''; and a ` fragile, unenclosed'' inter-subjective space that expands or collapses as recognition alternates with assimilation orprojection (1998, pages 105 ^ 106; 2000, page 300).(11)

This is a richer account of the spaces of subjectivity than the frozen geometry ofinside self and outside other informing critiques of home. Benjamin's `overinclusive'reading of subjectivity is one that can embrace ambiguities in the meaning of home asboth exclusionary space and a space of mutual recognition. It does not suggest that wecan ever know exactly what home means to the other, since reciprocal recognition doesnot mean that the positions of self and other are reversible (1998, page 100). Rather,recognition is partial and asymmetrical (page 101; 2000, page 301; Bondi, 1999, page 19;Young 1997, page 46). To recognise the other requires acceptance of their ` indepen-dence and unknowability'', such that mutual recognition includes a transformed notionof autonomy (Benjamin, 1995, page 22).

Housing the self, then, need not always mean evicting the other. As Young (1997,page 161) argues, a more constructive response to the depoliticising and exclusionaryaspects of home ` is not to reject the values of home, but instead to claim those valuesfor everyone.''

^ ^ ^

My fourth or fifth visit to Dad in the residential home took place on a sunny morning inJanuary. I felt some hope that maybe things might not be so bad; that he might be moreaccepting ... .My optimism grew when I saw that he was sitting quietly in one of thelounges. He was happy to see me. When he started to speak he seemed more articulate.But then tears welled up in his eyes as he said ` I can't believe it, I just can't believe it.''` Believe what, love?'' ` I never thought I'd end up in a place like this.''

^ ^ ^

In her essay on ` House and home'', Young (1997) argues that home ` carries a corepositive meaning as the material anchor for a sense of agency'' (page 159), an assertionthat resonates with calls for less attenuated accounts of subjectivity recognising the

(10) Inclusion responds to the other's survival of negation, but what is included is not the other butthe disavowed parts of the self (Benjamin, 2000, page 301).(11) This concept of intersubjective space originates in Winnicott's (1971) ` potential space''.

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need for some coherence in our sense of self. But our selves also change daily throughinteraction with other people. Consequently, ` home as the materialization of identitydoes not fix identity, but anchors it in physical being that makes a continuity betweenpast and present'' (page 159).

Young suggests that home acts as a `materialization of identity' in two ways. Thefirst of these is as an extension of the body: the home, the objects it contains, and the waythese are arranged in space serve as a sort of memory deposit, providing ` pathways forhabits'' (page 150). Young draws here on Edward Casey's (1993, page 117) concept of` `habit memories'... memories formed by slow sedimentation and realized by thereenactment of bodily motions ... [from which] we get our bearings.'' They enable usto carry out our activities of daily living without constantly attending directly to them.

The second way in which home materialises identity is connected to a narrativemodel of self. The home and domestic objects ` carry sedimented personal meaning asretainers of personal narrative'' (Young, 1997, page 150). Young warns against roman-ticising the act of preserving these ` material markers'' of our stories (page 154). Theycan become museum pieces or status symbols. But they can also serve to link the past,present, and future of both individuals and groups, or to allow us to revisit andreassess the past in the light of new connections and commitments, rewriting ourstories with a view to future change (page 154).(12)

`Without such anchoring of ourselves in things'', Young concludes, ` we are, literally,lost'' (1997, page 151).

^ ^ ^

In summer 2004, in one of my last visits before Dad collapsed, I asked him late oneafternoon whether he'd like to go out for a meal, something we often did when I visited.He said he would and we set out for a place we both liked. Half way there, things startedto get difficult. Never a patient man, Dad fretted at the rush hour congestion. He askedconstantly whether we had enough petrol. He kept looking at his watch.

We turned off the motorway and I somehow missed the road I'd intended to take. Ididn't dare stop to look at the map because doing so would only increase Dad's anxiety, buthe still started to say he wanted to go home. I protested that we hadn't had anything to eatyet and that it was still early. But still he kept on. I glanced sideways at him and saw with amixture of fury and shame that he was staring straight ahead, flat cap and chin juttingforward, ashen faced, his mouth set in a perfect upside-down U.

I suddenly saw that this summed up everything I resented about the situation. Dad'sword had been law when I was a child. I'd been well aware of the shift in the powerrelations now I was the one sitting in the driving seat and had allowed myself to enjoy itin small ways, such as taking slightly different routes to the ones he'd always taken. Buthere we were, locked in a conflict of interests. I didn't want to go back. Taking him out wasmy way of coping: having something to do together rather than sitting watching him athome, dwelling on his decline. In the car, when he wasn't beset by anxiety, things weremuch better. There was always something different to look at and Dad would comment onwhat he saw as we went along. I didn't need to respond if I didn't feel like it.

This evening, though, there was no shifting him from his obsession with wanting to turnback. I felt indignant. Now, it wasn't him telling me what to doöafter all, I was still in thedriving seat. Instead, I was the one who had to set aside my own needs in order to meet hisneeds and desires. His fears weren't rational, but that was beside the point: his need was fargreater than mine. But still I resented it.

^ ^ ^

(12) See, for example, Divya Tolia-Kelly's (2004) work on South Asian homes in Britain.

Stories of dementia, home, and the self 59

The destruction wrought by dementia is sometimes described in terms of a `livingdeath' or `loss of self '.(13) In reaction to such stereotypes, the last two decades have seenthe emergence of a growing body of work by medical practitioners, psychologists, andphilosophers on the issue of dementia and the self. They share a concern not to relyexclusively on the biomedical model of neurological impairment to account for theexperience of dementia, but to acknowledge the contribution of social psychology. It issuggested, for example, that the aspects of self most likely to be undermined are oursocially presented personae, such as a professional identity, and that these are lostlargely through others' failure to recognise them (Sabat and Harre, 1992). Behaviourexpressing the desire to maintain these public personae may be misinterpreted by othersas the product of neurological impairment.(14) Positioning someone as ` the dementedpatient'' thus creates a self-fulfilling prophecy about loss of self (Sabat, 2001, page 20).A malignant (if not malicious) social psychology creates a binary division between` them'', the ` damaged, derailed, deficient'' sufferers of dementia, and ` us'' (Kitwoodand Bredin, 1992, pages 271 ^ 272). Tom Kitwood (1990, page 185) points out the fear ofwhat the carer's own future may hold that foments this othering.

Authors writing on this subject argue that aspects of personhood survive well intothe later stages of dementia: efforts to maintain self-respect or relate to others, forinstance. Personal characteristics can survive (I experience my father as both the sameand not the same as he was). However, most of these authors acknowledge thatneurological impairment does sooner or later threaten selfhood in significant ways.These include loss of the capacity to narrate the stories of self because of an inabilityto hold past, present, and future together, to `keep track' (Luntley, 2006; Radden andFordyce, 2006).

Others therefore need to sustain the identity of someone suffering from dementia.Jennifer Radden and Joan Fordyce (2006, page 80) describe this process in terms ofassuming greater ` collective authorship'' of the narratives of self. As an example theycite the way two sisters helped their father to decide what to do with an old couchwhen he moved from the family home to specialist accommodation.

`The 30-year-old couch was a reminder of happy family times; it bore repairs J hadcompleted himself ... even the damaged upholstery, scratched by his dog, remindedthis old man of companionably sharing the couch with the dog for recent afternoonnaps'' (page 83).The couch was, however, beyond repair and so shabby that it would be off-

putting to people visiting J in his new home. As he was unable to bear in mind thepros and cons of moving or replacing the couch long enough to make a decision, hisdaughters kept in their minds ``all the strands and significances he seemed beyondretaining, and proffer[ed] them when they were called for ... prompting and remindingJ as he proceeded, they helped him work towards a resolution of this dilemma''(page 83).(15)

` Negotiation'' between subjects is however ` severely compromised'' by dementia(page 80). This makes it difficult to imagine the relationship between carer and carereceiver as involving recognition in the terms discussed by Benjamin (1998). The require-ments of caregivers described by Kitwood (1997, pages 119 ^ 120) are more akin to what

(13) Donna Cohen and Carl Eisdorfer (1986, page 22) cite a man with dementia who wrote: ` Everyfew months I sense that another piece of me is missing. My life ... my self ... are falling apart.''(14) For example, one man who had earned his living as an academic preferred to take walks ratherthan participate in day-care activities, but thereby risked being seen as displaying the aimlesswandering often attributed to dementia (Sabat and Harre, 1992).(15) There is always, however, a potential for unwitting abuse, since ` there are in principle nostandards by which to judge the caregivers' interpretation'' (Thornton, 2006, page 140).

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Benjamin (1995, page 23) describes as attunement. Nonetheless, the person-centredapproach to dementia care echoes the intersubjective argument that selfhood is rela-tional (Kitwood, 1993; Kitwood and Bredin, 1992, page 275). The collective authorshipof stories of self involves a form of recognition: by revisiting all the considerations thatmattered to J, for example, his daughters recognised and sustained his narrative ofidentity (Radden and Fordyce, 2006, page 84). The extent to which relationships havebeen based on mutual recognition before the onset of dementia might also help toexplain why some spouses are more able than others to ` attun[e] themselves to theirpartner's state of mind without fear of succumbing to it'', as Janet Sayers (1994,page 133) observed. The more resilient carers she met could empathise while retainingsome distance between themselves and their spouseöan instance, perhaps, of theparadoxical closeness and separation characterising Benjamin's intersubjective spaceof recognition.

The ethical position adopted by such authors is that, even if there is a loss of self,it is ` compatible with remaining an object of moral concern by being a subject capableof experiencing pain, comfort, distress, and so on'' (Luntley, 2006, page 120). Oneway of expressing that moral concern and sustaining the identity of someone withdementia is by preserving material connections with their past: making it possible,for example, for them to stay in their own home for as long as possible, even wheresome risks are involved in doing so (Matthews, 2006, page 176).

Trying to understand what home means to people with dementia underlines, Ibelieve, the importance of both challenging exclusionary ideals of home and, as Young(1997, page 161) puts it, attending to ` the concrete localized experience of home, andthe existential meaning of being deprived of that experience.'' As a number of authorshave noted, ` it is easier to criticize home from the position of having a secure one''(Ahmed, 1999, page 335; Benhabib, 1999, page 357; Pratt, 1999, page 157). Having seenhow being at home helped my father sustain his narrative of self, and how not beingable to go home now causes him and some other residents of his care home suchdistress, I can no longer read denunciations of the dysfunctional home without feelinga chill of unease. We are none of us autonomous at home, but there may come a timein our lives when we too desperately wish we were.

^ ^ ^

I finally relented that evening. I found a road that would take us back towards Leeds, butlooping up over the moors first. Dad seemed to relax a little after we turned off and as theroad leveled out across the summit the evening sun came out. Going down into the nextvalley we saw a sign for a pub serving meals; we turned down a narrow lane between stonewalls and found a few houses, a church, a stream. We ate and talked; the mood hadchanged completely, for the time being.

The neighbours had been urging me to have Dad ` put away'' and relatives and friendshad been saying much the same, in kinder terms, for the previous year. They worried aboutthe impact of the constant crises on my own health and my marriage. So why was I stillrefusing to do anything about moving Dad to a home? I'd been over the argument aboutwhat was in his best interests many times, but what about me? Was it all just an excuse fornot moving him to London with us? For all I knew that that was in practice a nonstarter,it didn't stop me feeling as guilty as hell.

In the end I decided that why I was doing what I was doing didn't matter. In the endmatters took their own course. Now, I dream of winning the Lottery as the only way inwhich I might be able to make things just a little bit better for him. Buying a house withroom to accommodate Dad and nurses providing round-the-clock care. I know it'snot going to happen and I suspect that, even if it did, it wouldn't really help much.

Stories of dementia, home, and the self 61

He'd be happy to have me with him, I think, at least while he is still capable ofrecognising me. But the only thing he really wants is to go back to his own home, andthat's never going to happen.

In the next few months I shall sell his home. I'd hoped to do it up enough to let but thatproved impractical. Leaving the bungalow to deteriorate doesn't make sense. So I snatch

days from work toclear it out. Thefeelings of loss andbetrayal are over-whelming. I've hadhis two greenhousespulled down. Theywere beginning tofall down, but Dadstill sometimes tellsme that he's spentthemorning in them,and I remember theclean moist smell ofplants growing. I'vetaken his old photo-graphic enlarger tothe tip, and all his

big band records. We've brought boxes full of household items back to London; but othershave gone to raise funds for the local chapel, the local Institute. I feel bad about givingaway things that my parents valued (their wedding presents?) or that my grandparents hadbrought back from holiday. I unearth familiar objects from the rubbish in the garage andache with remembering: two vases that I never liked, that I hadn't thought about in years,but that take me back instantly to when they were full of sweet peas from the garden.

My aunt tells me that it's a terrible thing, having to ` break up a home''. And still Daddreams of going back there.

Postscript: a note on ethicsIllness and old age are recurring topics in the recent literature that considers howthe geographies of emotion connect spaces and selves (Lipman, 2006, page 622;see Bondi et al, 2002; Butler and Parr, 1999; Davidson and Milligan, 2004; Davidsonet al, 2005). With a few exceptions, the literature on emotional geographies does notaddress the author's own experiences, possibly because the perceived scholarly biasagainst writing about both the emotional and the personal makes it a risky under-taking to combine the two. The bias is widely described as gendered (Fleischman,1998; Pain and Bailey, 2004; Thien, 2005; Widdowfield, 2000). Possibly for similarreasons, geographers' autobiographical writing has mostly charted their professionallives.(16) Few have written about their personal lives, fewer still about their family'shome lives. Exceptions include Massey (2001; 2006), Owain Jones (2005), and RachelSaltmarsh (2001). Other disciplines appear less reticent (Moss, 2001b); this paperwas partly inspired, for example, by Young's (1997) story of her `bad housekeeper'mother.

(16) This is true of most of the chapters in Anne Buttimer (1983) and Pamela Moss (2001a), althoughsome link personal and professional lives, as do Bondi (1999), Moss (1999; 2001b), Vera Chouinardand Ali Grant (1995), and Gill Valentine (1998).

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Interestingly, none of these scholars writing about their family and home livesdiscusses the ethics of doing so, although concern has been expressed about the ethicalimplications of work that depends on access to private spaces (Oberhauser, 1997; Patai,1991, page 142).(17) The concerns become more urgent when writing about a parentwith dementia: codes of ethics often identify people with cognitive impairments asrequiring additional protections. These may involve asking a carer to ensure that thecare receiver's rights are respected; but can I represent my father's interests effectivelyin this instance? I have been thinking about these questions since I first consideredwriting this paper in the months following my father's move to the care home (I haveleft the story at that point).

The issue of informed consent is fraught with difficulties when someone cannotremember what has been agreed only a short while earlier or handle more than a fewpieces of information at a time. When asked to answer questions for an official surveyof resident satisfaction with care home services, my father consistently reported that hewas entirely satisfied, then immediately returned to his requests to be taken home.Whilst he might assent to something, then, I do not believe that he could be regardedas giving informed consent. To describe to him what I have written about would initself present an ethical dilemma, since the subject of home distresses him and he hasonly referred to his mental health at moments of extreme agitation. I have never heardmy father use the words ` dementia'' or `Alzheimer's'', even when first diagnosed, and,rightly or wrongly, I have taken my cue from him and never tried to discuss his illnesswith him.(18) (When necessary, I have spoken only in terms of ` memory problems'',which he has usually denied.) For these reasons, I have not discussed this paper withhim.

What I have written can be considered an encroachment on my father's privacy.Given the difficulty he now experiences in taking in any information not relating to hisimmediate concerns, I believe that a loss of privacy does not harm him in any direct,practical sense; but it can be argued that we should, rather, use the `then' self asreference point (Dworkin, 1993). If I could have told my father, in the past, what Iwas going to reveal about his future self, I think his instant reaction would have beenone of shame and anger.

I also believe, however, that he would, then, have been capable of seeing that thereare other issues at stake. For instance, hiding something can imply that it is blame-worthy. To conceal how my father has been affected by his illness could foster the` malignant social psychology'' that undermines dementia sufferers' dignity (Kitwood,1990, page 181). Making dementia more visible is, by contrast, ` indispensable to under-standing what is at stake in the ethical dilemmas of Alzheimer's disease'' (Moody, 1992,pages 68 ^ 69).

I have, nonetheless, been selective in what I reveal about my father. At the sametime, I have tried to avoid sanitising the account of my own responses. Tom Kitwoodand Kathleen Bredin (1992, page 273, emphasis in original) argue that recognising that` we ... are damaged, derailed, deficient too'' provides a basis for approaches to demen-tia that can sustain personhood.

In considering these ethical questions, I have been thinking, then, not only of my fatherbut of others with dementia and of those who care for them. Writing this paper hasmade me think hard about how my father's well-being is influenced by my behaviour,

(17) It is when writing about ethics that geographers appear most willing to write autobiographically(Moss, 2001b, page 8; see England, 1994; Gilbert, 1994; Rowles, 1978).(18)Harry Moody (1992, page 53) describes the problems surrounding the idea of a ` right not toknow'' as an example of the moral ambiguities associated with dementia.

Stories of dementia, home, and the self 63

as well as by my complicity in the systems of values that deny dementia sufferers whatSteven Sabat (2001, page 339) calls a ` truly humane'' approach to care. The painfulexperience of seeing a close relative develop dementia can make it very difficult to seehow you may be contributing to his or her problems, and this, as well as the fundingissue, requires far more public discussion. As Young (1997, page 73) writes, ` narrativeprovides an important way to demonstrate need'', and it becomes the responsibility ofothers to sustain the narratives of people with dementia, publicly as well as privately(Aquilina and Hughes, 2006, page 152; Radden and Fordyce, 2006, pages 83 ^ 84).In addition, caregivers suffer high rates of stress and anxiety (Maidment et al, 2005).One of the things I have found helpful in this context is reading first-person accountsof (caring for someone with) dementia.

In short, I hope that I have followed the recommendation that as researchers weexercise our ` moral imaginations'' to address the concerns of everyday life, not only` increasingly stylised expectations of research ethics'' (Cloke et al, 2000, page 136,citing Hay, 1998; see also Rowles, 1978). We need an ``alternative to the ethics of rulesand principles so pervasive in our general thinking about ethical issues'' (Moody, 1992,page 70).

Acknowledgements. This paper was written for the `Connected Spaces' conference convenedby Lesley McFadyen and Matthew Barac at the McDonald Institute, University of Cambridge,14 ^ 15 May 2005. I am grateful to them for their invitation to participate in this event. I would alsolike to thank Alison Blunt, Steve Legg, Linda McDowell, JoAnn McGregor, and three referees fortheir helpful and insightful comments on this paper.

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