Journal of Aging Studies 24 (2010) 96–104

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Journal of Aging Studies

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The body as existential midpoint—the aging and dying body of nursinghome residents

Anna Whitaker⁎Linköping University, National Institute for the Study of Ageing and Later Life (NISAL), SE-601 74 Norrköping, Sweden

a r t i c l e i n f o

⁎ Tel.: +46 11363403.E-mail address: anna.whitaker@isv.liu.se.

0890-4065/$ – see front matter © 2009 Elsevier Inc.doi:10.1016/j.jaging.2008.10.005

a b s t r a c t

Article history:Received 29 June 2008Received in revised form 28 September 2008Accepted 29 October 2008

The human body has been the object of extensive attention in the social sciences, recentlyreceiving increasing interest from social gerontology as well. However, the issue of old bodiesand particularly the body in the fourth age of life remains relatively under-researched. The needto give emphasis to the subjective experiences of the oldest old during their final phase of life hasbeen pointed out. This article is based on data obtained from ethnographic fieldwork carriedout on a nursing homeward, and explores and analyses how the residents talk about and regardtheir own aging and dying bodies. The focus is on the link between the disintegrating body,aging and death in an institution-based care context. It was found that the body is the centralentity throughwhich the residents experience daily life, throughpain, through the caringprocess,through diminished physical and cognitive functions, and as such constitutes the existentialnucleus of their being. The article includes a discussion on how these experiences also elucidatethe way in which the body is a mediator for issues seldom acknowledged such as existentialneeds.

© 2009 Elsevier Inc. All rights reserved.

Keywords:AgingBodyDeathEnd-of-lifeInstitution-based eldercareNursing home

Introduction

The human body is the subject matter of a massive explo-ration and theorizing in scientific writing (e.g. Turner, 1984;Featherstone, Hepworth & Turner, 1991; Williams & Bend-elow, 1998; Cunningham-Burley & Backett-Milburn, 2001;Shilling, 2003). Issues concerning the agingbody—in particularthat of the oldest old—have not until recently been addressedin social gerontology (e.g. Öberg, 1996, 2003; Twigg, 2000,2004, 2006; Gubrium&Holstein, 2000; Faircloth, 2003). Froma general point of view, marginalized and problematic bodieshave had (and still have) a peripheral position in the theo-retical discussion (cf. Hallam, Hockey & Howarth, 1999). Thisindifference to the body in the so-called fourth age is oftenexplained by the deeply rooted ontological dualism betweenbody and self (soul) (e.g. Öberg, 1996; Shilling, 2003; Twigg,2006) that has permeated sociology and social gerontology. Inseparating the subject of aging from geriatrics, from biomed-ical reductionism and the negativities of bodily aging, social

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gerontology has (rightly) stressed the cultural and social per-spectives and supported the positive images of aging; e.g. the“successful aging” (Hughes, 2000; Tulle-Winton, 2000; Twigg,2000; 2004).Not to run the riskof cementing stereotype imagesof older peoples' bodies as simply frail and dependent, agingresearch has been reluctant to address the actual body in oldage (Twigg, 2004). Social gerontology has also been accusedof avoiding not only the aging body but also the dying bodyamong the oldest old. Clark and Seymour (1999), for example,assert that gerontologists are so occupied with the positiveaspects/images of aging that they seem tohave forgotten aboutthe fact that (old) people also die (cf. Twigg, 2006). Twigg(2000) points out, moreover, that the constant emphasis onpositive accounts of body aging becomes troublesome whenwe confront the more negative aspects, such as:

... dirt, decay, decline and death—and it is precisely thesenegativities that lie at the core of some at least of theexperience of aging, however much positive accountsmay wish to downplay them (2000, page 7).

In recent years, aging research has taken a greater inter-est in the aging body in later life (e.g. Öberg, 1996; Öberg &

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Tornstam, 1999; Tulle-Winton, 2000, Gilleard & Higgs, 2000;Hurd Clarke, 2001; Hurd Clarke & Griffin, 2007), althoughmostly linked to the third age. A common subject for inquiryhas been the relationship between external appearance andinternal identity; how physical manifestations of growing oldare perceived, constructed and managed, and what impactthey have on self-identity (e.g. Featherstone & Hepworth,1991; Öberg & Tornstam 1999, 2001; Hurd Clarke, 2001).Now, it is possible to discern a shift within social gerontologytowards more specific body-related perspectives also of thefourth age (e.g. Gubrium, 1993, 1997; Becker, 1994; Magnús-son, 1996; Gubrium & Holstein, 1999; Twigg, 2000; Phinney& Chesla, 2003). In her study on the body and bathing incommunity care, Twigg (2000) illuminates the concrete andmundane aspects of the aging body as older people receivepersonal care in their own homes. Phinney and Chesla (2003)have studied theway inwhich dementia is experienced in andthrough the lived body. Comprehensive ethnographicwork byGubrium (1993; 1997) and Magnússon (1996) describe theso-called bed-and-body work and the relation between bodilyimages/perceptions and the daily routines in nursing homes.Gubrium andHolstein (1999) have reported on how the nurs-ing home and its everyday practice—discursively—shape andgive meaning to aged-body images.

Few studies account for the body role in the dying process,in particular that of the oldest old in their final phase; thesubjective bodily experiences of the old person remain rela-tively unknown. This article aims to explore nursing homeresidents' experiences of their own aging and dying bodiesby focusing on the link between body, aging and death in aninstitution-based eldercare context. Drawing on residents' per-sonal accounts, this paper intends to offer an empirical contri-bution to this field. I also wish to bring up central issues ofimportance for future research. The main questions of thepresent analysis are: Howdo old residents describe/talk abouttheir bodies? What does the body mean to them and to theirexperiences of daily life in the nursing homeward?What roledoes the body play as an existential condition during the end-of-life phase?

The aging and dying body in end-of-life care

Decline and death are unavoidable aspects of the agingprocess, ultimately a basic human—as well as a bodily—exper-ience (Shilling, 2003; Twigg, 2004). For aging and dying arenot only a physical but also an existential, spiritual, social andpsychological process. The hospice and palliative care contexthas more than any other paid attention to these dimensions.Since nursing homes or other forms of residential care aregaining importance as places of death, and eldercare to a largeextent consists of end-of-life care (Gubrium, 1993, 1997; Frog-gatt, 2001; Seymour & Hanson, 2001; Field & Froggatt, 2003;Katz & Peace, 2003; Pleschberger, 2007) and the focus of thisarticle is on the final phase of life, it seems appropriate todirect some attention to research on the hospice and palliativecaremovement and its influences on the care of the terminallyill along with eldercare.

Since the 1960s, the hospice movement has presented anentirely different idea of care of the dying (Saunders, 1997;Saunders&Kastenbaum, 1997),which togetherwith thewide-

spread principles of palliative care, has completely overshad-owed the ideological perspectives of care policy and careresearch (NBHW, 2000; 2004; SOU 2001:6) and recently alsoreached the eldercare field (e.g. Katz & Peace, 2003). Thisideological turn represents an unavoidable criticism of the so-called ‘modern death’ (Walter, 1994), dominated by a medicalview of sequestration, institutionalization and professionali-zation (cf. Giddens, 1991; Kellehear, 2007). With its holisticapproach, the hospice movement has made significantcontributions to loosening up the strict dividing lines betweenthe medical and the social perspectives, also with regard tothe body. The declining individual has attained a more cen-tral position in his/her own death drama, has become “re-empowered” and regained control over the process of dying,nowwith an increasingly informed possibility of makingwell-grounded decisions about medical interventions as well asexistential matters. The dying individual's own wishes andfeelings have taken precedence over standardized care rout-ines and interventions (Walter, 1994; 1996). Death and dyingis now about body and soul (spirit), the dying individual andhis/her family. The pain/suffering related to dying can be exis-tential/spiritual as well as physical. Self-esteem, autonomy,integrity, quality of life and dignity are important aspects. Thedying body is no longer reduced to an arena for physical symp-toms, pain or medical interventions. Experiences of varioussymptoms (e.g. fatigue, difficulty in breathing, constipation,xerostomia, lymph oedema, loss of appetite, etc.) and otherbodily changes are ascribed significance for the maintenanceof the self and identity of the dying person as well as for themaintenance of social relations (e.g. Rydholm & Strang, 2002;Friedrichsen & Erichsen, 2004; Sand & Strang, 2006).

However, this image of the hospice and palliative caremovement has not remained unchallenged. It has been crit-icized for being an exclusive form of care for a limited target-group of cancer patients (e.g. Hockley, 1997; SOU 2001:6,Swedish Government Official Reports (2001; Seymour &Hanson, 2001; Hockley & Clark, 2002) and for giving a fartoo idealized view of death and dying (e.g. Seale, 1995; Clark,1999; Sandman &Woods, 2003).While hospice and palliativecare has been associated with the “good” and the “dignified”death, the institution-based end-of-life care offered in hos-pitals and nursing homes still evokes the image of the “poor”,“undignified” and “shameful” death (Howarth, 1998; 2006;Magnússon, 2004; Kellehear, 2007). The critics further arguethat this “heroic” death role—as described above—is unreal-istic, since most people die in a lingering process from com-plex conditions seldomdiagnosed or considered as “terminal”.Consequently, they don't have access to or the opportunityof having a “good death” (cf. Seale, 1995; Field, 1996). Variousaspects of body and embodiment are still neglected in practiceas well as in research (e.g. Lawton 1998; Street & Kissane2001). Lawton (1998), for instance, argues that despite itsexplicit aim of opening up and humanizing the care of thedying, hospice care actually disguises the negative aspects ofthe dying body.

Issues of dirt, decay, disintegration and smell are rarely,if ever, written about by hospice professionals or coveredin media representations of hospice care. Rather, theyare ‘glossed over’ as ‘symptoms’ requiring ‘control’ (1998,page 132).

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So, Lawton (1998) argues, death and dying is no longertaboo, but some of its physical disintegration is, such as thedead body itself (Komaromy, 2000). This has been overlookedin research on end-of-life care.

Method

This article draws on comprehensive ethnographic field-work carried out on a nursing homeward in Stockholm. Sevenmonths of participant observation were combined with num-erous informal conversations with residents, staff and visitingfamily members/relatives. This methodological approachfacilitated analytic triangulation, based on data from the nurs-ing home residents, family members, and staff. The studyended up with a broad spectrum of results concerning thedaily life of the residents; the relationships between familiesand the staff, the respective roles assumed in the events sur-rounding the dying process, and the extent of family involve-ment, to mention a few areas (Whitaker 2004a, 2009). Herespecial attention is paid to the experiences of the residents,based on the informal conversations and observations. Duringthe period of study the ward had about thirty residents, thevast majority of themwomen (25), aged 79 to 101. Many hadlived there for several years, some up to five and a few for asmany as ten. All of them were severely impaired physicallyand/or cognitively. In the eyes of staff and relatives they wereterminally ill or in theirfinal stage of life, while not necessarilyin the final process of dying. Seven residents died during thestudy.

The topic dominating conversations with the residentswas their experiences of the body, its decline and the ap-proach of death. It was quite obvious that they wanted toshare their experience of growing very old, the consequencesof becoming more and more dependent and the waitingfor the final death. It is important to note that quite a fewresidents were severely demented and confused, and conse-quently had difficulties in expressing themselves adequatelyin words. In our conversations their bodies were constantlypresent, not only as a topic of conversation but also throughthe combination of verbal and body language. The residents'talk about the body was often coupled with exposure of var-ious parts.

I did not interview the residents, but let them decide thetopics of conversation. Often the conversations did not last formore than fiveminutes atmost, due to the residents' ill healthand fatigue. The conversations were not tape-recorded. Theywere informal conversations under-taken naturally during thevisits to and observations on the ward, and summed up aspart of my field notes. Immediately after a conversation witha resident, Iwent to a nearby staff room toput down thewholeconversation as I recalled it. I recorded not only what was saidin words, but also gestures, body language and other obser-vations such as the resident's state of mind, health condition,clothing, etc. In this respect there is every reason to be self-critical and reflective (Maxwell, 1992). Did I remember rightlywhat happened andwhat was said, in what order and in whatmanner? Couldmymemory be at fault? I sought to attain suchexactness as far as possible in these circumstances, or to quoteWilcott (in Maxwell, 1992, page 286), “I try to record as accu-rately as possible, and in precisely their words, what I judge tobe important ofwhat people do and say”. Maxwell (1992, page

286) refers to this primary understanding as descriptive val-idity. A selection is of course inevitable since it is impossible towrite down literally everything that is said and done.

The qualitative analysis proceeded in several steps,strongly influenced by ethnographic approaches (e.g. Taylor&Bogdan, 1998) and grounded theory (Glaser, 1978; Charmaz,2002). I typedmy field notes and scrutinized them repeatedlyin order to sort out and clarify essential themes and patterns.In subsequent stages, key categories and processes were iden-tified. In qualitative design and the inductive approach, theobserved actuality ideally generates concepts and categoriesfor the analysis. I discerned several central themes and somedistinct manifestations of the residents' personal experiencesof the body. Of central interest in a qualitative study like thisone is the validity or trustworthiness (seeMishler, 1990) of notonly the descriptions but even more so the interpretations,and which Maxwell (1992) refers to as interpretive validity.This kind of validity concerns what different activities, events,behaviors, accounts mean to the people involved in them andhow I interpret these. Ideally the interpretive accounts shouldbe “grounded in the in the language of the people studied”(Maxwell, 1992, page 289), but in providing a valid accountof individuals who lack such assessable language, such as theresidents with severe dementia, the interpretive validitymerges with the theoretical validity. This means that I havereserved formyself the right to not reduce the analysis and theinterpretative work to be an understanding that solely is validto the individual resident, but rather one that goes beyond themore concrete descriptions, words, concepts, and interpreta-tions made by the residents. However I have been particularabout having grounded my interpretations in enough data(informal conversations and observations) to support myclaims, and I have throughout the analysis adopted a self-critical approach which could be called reflexive interpretation(Kvale, 1989), meaning that I continuously have examinedand questioned my own interpretations.

Findings

Five distinctive themes were found regarding the wayin which the residents talked about their bodies: 1) theincapable body, 2) bodily needs–bodily dependence, 3) bodilychange and alienation, 4) the inevitable death of the body and5) body stories and “body wanderings”. The themes overlapto a certain degree and all five themes are very much imbuedwith the proximity to death. However, aging is not only anembodied process; it is “emplaced” as well (McHugh 2003).Therefore, a brief description of the nursing home is appro-priate, since it illuminates crucial contextual features shapingthe residents' experiences of body and daily life. It is, how-ever, not my intention here to give a comprehensive analysis,but rather a ‘temporal and spatial sketch’ of the nursing homeorder.

The body in institutional time and space

A full grasp of the residents' bodily experiences mustnecessarily take into account the institutional characteristicsembedded in the physical environment and in the everydaystructures (cf. Gubrium & Holstein, 1999). The aging anddying process is very much restrained both temporally and

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spatially by themateriality of the institution (cf. Twigg, 2000);its organization and everyday routines, working schedulesand care practice, still predominantly task-oriented and re-volving around the residents' bodies, through dressing, un-dressing, showering, washing, changing diapers and cathe-ters, feeding, etc. (cf. Magnússon, 1996; Gubrium, 1997).

The nursing home is not a “placeless place” (Twigg, 2000,page 78). It is a home as well as an institution (cf. Stafford,2003), a place of both living and dying. It is indeed a place ofsuffering and loss, isolation and loneliness, stigmatization andalienation, all features frequently associated with institutions(cf. Goffman, 1991; Gubrium, 1993; 1997), but importantly, itis also a place of comfort, relief, a community of caring, safety,closeness and inclusion, features often related to the socialmeaning of home (Magnússon, 1996;Whitaker, 2004a; Twigg,2006). The twomajor features embedded in the overall exper-ience of the setting werewaiting and the omnipresence of deathand dying. The nursinghomewas regarded as “the last abode inlife”. The residents used different names for it, but the mean-ing was the same; this is a place where old, sick people—likethemselves—come to die. The nursing home is therefore char-acterized not by either/or but rather by simultaneity (Whitaker,2009). This “inherent cultural ambiguity” (Stafford, 2003,page 7) arouses feelings of ease as well as of reluctanceamong the residents.

The experiences of the omnipresent dying and death arelinked to the health status and care needs of the residents in thisspecific ward. The residents were highly aware of their con-ditions, and often described themselves as impaired or inpoor health, getting worse. The same assessment was madeby staff and family members, who described many of the re-sidents as being in a “living-dying phase” (Whitaker, forth-coming; cf. Froggatt, 2001). The borderland between livingand dying is not entirely plain to see and is hard to define,especially in the case of slow and prolonged dying (Froggatt,2001; Komaromy, 2000; Small, Froggatt & Downs, 2007). Yet,the nursing home as a placewhere the residents “come to die”rather than a place where they “come to live until they die”gives meaning to the embodied experiences. The institu-tional features reinforce the image of bodily decline (Whi-taker, 2004a; cf. Gubrium & Holstein, 1999).

Another emerging aspect of the temporal and spatial orderof the nursing home is the residents' ‘small world’. Their per-sonal territory was to a great extent restricted and reduced toa very limited space. A bed, a bedside table, a windowsill withflowers and a small area around constituted the entire livingspace of each resident. Health permitting, the day room, cor-ridor and veranda could bring about a somewhat more ext-ended life sphere. The concept of time space (Hägerstrand inAsplund 1983) encapsulates this limited room, spatially andtemporally, and how the world has shrunk to the boundariesof the body. These dimensions and experiences of the nursinghome and the aging and dying process elucidate the intimatelink between the place and the body, and that a considerablepart of the residents' daily life is directly constrained to thebody.

The incapable body

When illness, decline, physical and cognitive impairmentsof various kinds first appears in old age, one could make the

claim that it is a natural marker of the end-of-life rather thana disruptive event in the middle of it. However, I found thatseveral of the residents—despite great age and despite nor-mative expectations of the typical/normal life course—regarded their illness (dementia, stroke or cancer) and themove to the nursinghome as a very disruptive event; an actualand unexpected biographical disruption (cf. Bury, 1982; Wil-liams, 2000; Whitaker, 2004b).

Impairment, illness or physical/cognitive limitations hadliterally taken over the residents' lives. They often expressedaggravation and frustration over the incapable body, and aboutthe loss of control. Gradually lost functions are a sorrow thathas a huge impact not only on the self-esteem and personalidentity, but also on the physical state as fatigue, pain andsuffering (cf. Parkes&Markus, 1998;Hurd Clarke, 2001). “It's apity not to be able to see the beauty of the world anymore,” aman with severe visual impairment sadly observed one day.The aging as such arouses feelings of grief and distress. HereIsa, 99:

“No, I feel sad …” “Why are you sad?” I ask. “Well … I'mso old … and … you'll see for yourself when you grow old… then you easily get sad now and then.” She leans backto gaze out of the window. “I think I need to rest a bit, ifI may?”

Illness, weakness, pain, and most of all the care workoccupied most of the residents' waking hours. They oftencommented on hurting limbs or discontinued capacity. Agnes,92, and Sigrid, 89, I found sitting at a table in the corridor onemorning:

Sigrid yawns, “I feel old and tired, and I had a bad nightlast night, I'm so exhausted.” Agnes gently rubs her legs.“My legs and feet hurt so today.” She strokes her lips.“There is something here, something rough …” I say thather lips are dry. Her eyes are sleepy and filled with tears.“I need to get to an examination room.” she says sud-denly. “Examination?” “Yes, so I can get well again. That'swhat I want.”

Beyond Agnes' complaints of hurting limbs, in the midstof confusion and by an impossible wish, it is also possible totrace a message of great significance concerning her presentsituation and condition, her existence. She asks for a change,she wants to get well.

The ever presence of dull pain was common among theresidents. Despite an abundant use of painkillers and otheranalgesics, pain was a constant companion in their daily lives.Some said it had gone on for so long that they were used to it.They even expressed acceptance: “This old body is done” or“This is what happens when the body becomes old and tired”were two common comments. Besides the pain, tiredness orfatiguewas just as usual. “I am so tired. I think I need to rest abit” was a recurrent line after a few minutes of conversation.

On thewhole the residents perceived their bodies as beingincapable and beyond control in a number of ways. For exam-ple, not being able to control bodily functions such as urineand feces led to feelings of shame, embarrassment, humi-liation, indignity and frustration (cf. Twigg, 2000; WiddingIsaksen, 2002).

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Bodily needs–bodily dependence

The nursing home residents were in great need of round-the-clock help, care and supervision. This unavoidable need isassociated with dependence and various restrictions. The needfor personal care represents an unwanted life transformation,and constitutes an unpleasant marker of increasing depen-dence and constricted autonomy (cf. Becker, 1994; Twigg,2000; Nordenfelt, 2003; 2004). These persons' ability to man-age for themselves and control their days is severely limitedby the institutional order, and by their illness and diminishingphysical and cognitive functions. Their poor health togetherwith their need of—as well as dependence on—care turn theirbodies into an “arena for care work” (cf. Magnússon, 1996),and in some quotations the residents express a strong senseof their bodies now belonging to the staff.

If I say something ... or if I say no, they [the staff] do whatthey like with me anyway… (Oscar, 87).

This unavoidable dependence contrasts sharply with theirformer independence and autonomy:

Why should I have to lay here useless and helpless, I whoalways was so healthy and cared for both others andmyself! (Lilly, 86)

Others could joke about it and express a kind of accep-tance, but as one woman said: “Whether you accept it or not,you really don't have any choice”. Dependence, however, wasnot always considered the worst of things. Some could cer-tainly consider the dependence as sad and unpleasant, butalso as a necessary evil that simultaneously could generatefeelings of safety, security and comfort. “Oh, they take goodcare of me, I don't need to worry. I feel in safe hands here”, or“You see, I can't take care of myself any longer, nor stay in myhouse, it's good to be here”.

When dependence was set against the vulnerability andthe actual needs of help and care, it not seldom came out assubordinate. In their study on life after ninety Bury andHolme(1991) suggest that we should see dependence as an un-avoidable aspect of life, irrespective of age, and that it involvesa complex dynamic of options and compulsions. We need toacknowledge that dependence, particularly in deep old age,can be of advantage to the individual. In line with Morell's(2003) argument of the necessity to see the interplay betweenpower and vulnerability in later life, autonomy and depen-dence should be understood as complementary, as co-existinginstead of as opposite poles (cf. Small et al., 2007).

Bodily alienation—the changed body

In the conversations the residents saw their bodies asstrangely altered and constantly changing. The bodies hadturned “wrinkly, skinny, ugly, and even stinky”, as one of theold women put it. They sometimes described their bodies asstrange and unfamiliar to them:

“How are you today, Isa?” “I'm fine, but I feel a bit strange,I don't know, inside me in some way.” “You feel strange?”I repeat. “Yes, but it's probably because I'm so old [99]. Ican't believe it's true, how old I am, and wrinkly, and dirty

… No, not dirty but… Do you think I'm wrinkly?' she askssuddenly. “Well, one can see you've lived a long life, but Ifind wrinkles beautiful,” I answer carefully. She laughs.“Do you? Well I don't know about that…”

To maintain self-respect, personal identity and dignity inthe face of decline and death, several of the residents arti-culated an ambition to take care of their bodies and theirphysical appearance, presumably as a contrast to the reign-ing image of frailty and death on the ward, but also as anexpression of resistance against the aging process. Thewomenwere slightly more concerned about changes in their physi-cal appearance than the (few) men in the ward, who focusedmore on aspects like their loss of sight and/or hearing, mobi-lity or memory. They were all careful about having their teethor dentures well cleaned, and their nails well tended. It wasalso important tomany to bewell dressed, towearmakeup; inshort, to look good and smell nice as long as possible. So theresidents didn't completely surrender to their bodily decline,even though theymostly expressed acceptance or resignation.

What do these experiences of the ‘body in change’ meanfor self-identity? On the one hand, the aging process repre-sents a threat to identity, in particular to physical and bio-graphical identity (cf. Nordenfelt, 2003; 2004). On the otherhand, residents emphasized that the body alone does not re-present their true identity/self and personality. An examplethat illustrates this very well is Marianne:

“There are no limits to human suffering” [she sighs] …

(pause)… “This… look here!” [She lifts her arm and slapsthe sagging skin of her upper arm] “This was once me;these are the remains of my past self.”

In her statement she places herself within her body. Shehas and is her body. But it is also possible to trace an exper-ience of separation, a division between body and self, whichshe also links to her feelings of suffering. But this does not inany simple way imply another dualistic distinction betweenthe body and the self. Like Marianne, the residents sometimestalked about their aging and dying process—with decline, im-pairment and finally death—as if they refused to identifythemselves with their bodies (cf. Goffman, 1990; Feather-stone & Hepworth, 1991). At the same time the aging anddying process not only masks or threatens their sense of self;it is in fact a threat to their very existence. Facing serious ill-ness, the relationship between body and self becomes blurred(Frank, 1995; Shilling, 2003). Bodily losses through illnessand impairment, for example dementia, Alzheimer's diseaseand stroke, also involve a loss of self, with profound impacton the identity (e.g. Bury, 1982; 1997; Becker, 1994; 1997;Charmaz, 1995; Williams & Bendelow, 1998).

The inevitable death of the body

Talk of death and dying was common among the residentsand often linked to their body experiences. These persons notonly have to handle illness, impairments or disabilities; theyare facing the end-of-life, their own demise. Several describedtheir condition/situation as “slow dying”. The prolonged pro-cess is a physical reality of which they were highly aware.They described themselves as becoming steadily weaker,

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loosing their taste for food and eating, sensing extremefatigue, turning into “skin and bone”. “You wither away dayby day, and it feels as if death would come as a relief” (Agnes,92). “Here we are, all of us, in bed, dying!” (Elin, 94).

They talked about the future in terms of death (cf.Gubrium,1997). And several expressed a strong wish to die (cf. Linden& Barnow, 1997): “Beware of the nursing home when yougrow old! … Actually, I just want to die as soon as possible”(Marianne, 85). For some the deathwishwas genuine, time fordeparture, life consumed. “I think they should let me die now,when I'm nearly 100 years old!” (Iris). For others the wishwasrather a yearning for change:

If it were for me to decide I would rather depart this life.That's what I would prefer … this is certainly not the wayI imagined it would be. (Gunnar, 89)

Some gave veiled hints at euthanasia and that they rightlyshould have control over their own death: “How long does ittake to die if you stop eating and drinking?” An interpretationis that these statements derive from lack of power in relationto the restricted nursing home life, at the dependence andfeelings of indignity. But the crucial factor is linked to theirbodily experiences of a prolonged process of disintegrationand its consequence, dying. Death and dying also arouse exis-tential questions about meaning. The most central questionwas notWhy me? orWhy now? butWhy this way? That ques-tion links directly to the bodily process of aging and dying andencapsulates many issues of existential character raised inour conversations. There were also questions about condi-tions beyond the end-of-life and death of the body but closelyrelated to personal identity and sense of self: What happenstomewhen I'm dead?Will anyone come tomy funeral?Will Ibe remembered?

Body stories and “body wanderings”

So far, the themes presented have shown how the stateof their bodies preoccupies the residents' thoughts, and thatthey obviously want to talk about their bodies and their illhealth (Becker, 1997;Hydén, 1997). According to Frank (1995),the purpose of illness stories and telling is twofold. It is personaland it is social:

Stories have to repair the damage that illness has done tothe ill person's sense of where she is in life, and where shemay be going. Stories are a way of redrawing maps andfinding new destinations. /…/ Stories of the illness haveto be told to medical workers, health bureaucrats, employ-ers and work associates, family and friends. Whether illpeople want to tell stories or not, illness calls for stories(Frank, 1995, page 53).

The storytelling is a way of compensating for the damagecaused by the illness. Furthermore, these stories are comingthrough the body experiences (cf. Frank, 1995). When peopledescribe their bodily illness or impairment, their bodies con-tribute by shaping the expression of the story. Additionally,the body itself has its stories to tell and its memories to share,and the body tale sometimes becomes more important thanthe spoken story (Frank, 1995; Hydén, 1997). Frank (1995)

formulates it as that the body at the same time is the cause,the subject of and the tool for their stories.

While the residents often showed a specific part of thebody when talking about it, they also illustrated their wordswith an expressive body language. Those who had lost theirability to talk or who were severely demented used bodylanguage as their main manner of communication and a veryexpressive one. One example is Elin—a 94-year old dementedresident—who often reached out her arm without words as ifto say she wanted me to touch her, see and feel her skin anddifferent body parts. I often let her bring me along on whatyou might call a “body wandering”. The following excerptfrom the field notes illustrates such an occasion:

She bares her arm, takes my hand and puts it on top of abruise, looks at me and then lowers her eyes. I gently passmy hand over the bruise and say quietly: “Oh, what hap-pened here?” She keeps silent, takes my hand again andputs it to her cheek. Her face is wrinkled and her mouthwithout teeth. Crust in her face andmatter in her eye. Thinand transparent. I fondle her cheek. She says somethinginaudible, for a long time keeps on murmuring somethingimpossible tomake out. Then after awhile she sayswith anunexpectedly strong voice: “And what noow?”

You may divine, from Elin's body telling, a number ofevents worth sharing though hard to read and put into words.Besides the need for confirmation, warmth and touch, myvery personal and cautious interpretation is that she is tellinga story of her body's condition, its change, its looks and itspains. The expressive final question adds another dimensionto her body tale. It might exemplify what Frank (1995) statesabout the story as recreating a map of life and destination;where am I headed, what is going to happen to me? In all herconfusion, Elin may be trying to comment on and handlesome vital and eternal queries.

My purpose in this section and with the example of Elinis to elucidate a subtler body theme; the body as a tool forcommunication. As a contrast to the experiences of the in-capable body, and the body as an arena for professional care,the residents clearly expressed—in words and emotions—aneed of body contact and of confirmation as well. Here, phys-ical and emotional needs should not be confused with theinstrumental and task-oriented “bed-and-body work”. Thebody is also an arena for communication, confirmation andtouch, though this is seldom paid attention to in the insti-tutional eldercare context.

Concluding discussion

In the light of the research referred to in the introductionto this article, there is every reason to problematize personalaccounts of the aging and dying body as well as paying at-tention to various aspects of the body and embodiment duringthe end-of-life phase. A common (and also reductionistic)image of the body in the so-called fourth age is the frail, de-pendent and disabled body, the body in decline. Twigg (2006)argues that this image derives froma literature that is “writtenfrom the outside”, that is “objectifying, distant, often couchedin the language of professionals and policymakers” (Twigg,2006, page 50). In this article I have tried to bring to the fore

102 A. Whitaker / Journal of Aging Studies 24 (2010) 96–104

the personal experiences of body among very old nursing homeresidents in their twilight years. This attempt to shift per-spectives has not altered the image of ‘the declining body’,which on the contrary seems rather to have been confirmedby the themes and results presented. However, beyond theaccounts of decline and loss of functions, and besides the factthat the body inevitably undergoes a process of ill health andphysical decline, and needs to be taken care of by others, it ispossible to discern a complexity and multiplicity of meaningssurrounding the personal experience of body and embodi-ment at the end-of-life. I want to conclude this article by firstbriefly summing up the main findings, followed by a dis-cussion based on the conclusions that can be drawn. Finally,I will raise some central issues of importance for future re-search on the aged-body.

First, the findings unveil the importance of contextualizingthe personal experiences of the body in the so-called fourthage. The nursing home as residence encompasses an inherentcultural ambiguity of being a home and an institution, a placeof both living and dying. A major feature embedded in theoverall experience of the setting was found to be the (omni)presence of dying and death. The uncertain and vague divid-ing line between living and dying, which partly reflects thedying trajectory of the oldest old, creates a sense of uncertainwaiting. As the findings show, this contributes to the resi-dents' perception of their lives as of inferior quality. Addi-tionally, it illuminates that the residents' everyday lives arecontinuously and inescapably centered on the body. Theexperience of aging and dying is not only illustrated by thesharp change from normal everyday life that is associatedwith institutional life, but also by the loss of identity throughphysical and cognitive decline. Especially through the om-nipresence of pain, fatigue and the incapability of managingfor themselves, but also through the staff's care work, theresidents' experiences reveal a high degree of corporealawareness. Since the body was experienced as constantlychanging and declining, the body becomes a marker of time.This importunate place of the body in the residents' everydaylife arouses varying reactions and emotions. The residentsexpressed sadness, grief, aggravation and anger at their loss ofphysical and cognitive functions and at the continuouschanging of the body. It is also possible to discern acceptanceand resignation in some of the quotations; that they havesurrendered to physical destruction as a part of life, of grow-ing old. In some of the examples, residents also gave expres-sion to the feeling of their bodies no longer belonging tothemselves, but instead being owned by the staff.

The findings disclose another dimension of the body ex-periences as something more than physical and cognitivesymptoms. Pain, weakness, fatigue, physical and cognitive im-pairments can also be understood as “the body's communi-cative interjection into social life”, to quote Seale (2001, page106). Through their bodies the residents call for a care con-sisting of bodily attention, confirmation and touch that goesbeyond the instrumental and task-oriented ‘bed-and-bodywork’, but the body also performs the important function of atool for communication, especially when language does notsuffice.

Besides the centrality of the body in everyday life, theomnipresence of and proximity to death gives cause for pay-ing specific attention to the body as a mediator for essential

existential issues. The findings clearly illuminate the existen-tial condition under which the residents live, and in what waythe existential issues are embodied in the aging and dyingprocess of the old. The most important and frequent exis-tential question found in this study is, Why in this way? Thisquestion partly suggests powerlessness before the irreversibleaging anddying process, andpartly is an exhortation about theway in which we take care of the oldest old during their finalphase of life. The overall picture conveyed is that when thebed-and-body work carried out by staff is not going on, theresidents are most of the time left alone with themselves andtheir bodies to deal with difficult existential questions. In thislife phase, bodily decline is therefore not only a temporal butalso an existentialmarker of dissolving identity and fading life.

The body themes presented illustrate the way in whichthe residents' experiences vary from the verymundane, trivialaspects of the body to the more essential and existential di-mensions. This does notmean that these aspects are separatedfrom each other. On the contrary, the seeminglymundane andtrivial, the taken-for-granted and the so-called dirty work’ ofchanging diapers, washing, taking care of urine and feces,rather contains or is intertwined with the more existentialdimensions; not only the meaning of dignity, preserved iden-tity or dependency, but in what way the body functions asa tool for communication and as a mediator for existentialissues. These things taken together—the contextual features ofthe nursing home and the inescapability of the body, bring tothe fore the body as an existential exclamation mark over thislife phase and the care context.

Additionally, these results exemplify thevariousdimensionsthat Bury (1982; 1997) ascribes to the concept of ‘biographicaldisruption’; the disruption of everyday life, the confrontationwithpain, suffering and death, a new attention towards the body, itscondition, pain and dysfunction. This biographical disruptionalso brings on a fundamental reconsideration of the life course.Understanding illness, impairment and death as a disruptiveevent challenges the normative idea that illness, impairmentand death in old age because considered ‘“natural”’ is therefore“easier” (cf. Howarth 1998).

The findings presented can be summarized in three overallpatterns: First, the body has failed/betrayed the old personand is the cause of the nursing home placement and the cur-rent situation. Secondly, the body has become an alienated‘thing’ that needs to be taken care of—by others. In the thirdplace, the body is simultaneously the corporeal and centralentity through which the old residents experience their dailylife, through pain, through the care work, through diminishedphysical and cognitive functioning.

One conclusion that can be drawn from these results isthat the body is central in the spatial and temporal order of thenursing home and as such constitutes the existential midpointof the lives of the old residents. It is through the body thatthey experience, suffer and ‘live’ their lives. Another conclu-sion from the results is that it is not death but the bodily declineand disintegration (before death) that the old persons fear most(cf. Lawton, 1998; Twigg, 2000). The ‘fearing life—longing fordeath’ theme in my data seems to be closely linked to theresidents' experiences of the irreversible bodily process ofslow and prolonged dying and of the present situation as anunworthy, undignified life phase. These conclusions helpmake the residents' wish to die comprehensible. However,

103A. Whitaker / Journal of Aging Studies 24 (2010) 96–104

more attention needs to be paid to the meaning of the bodyand embodiment among the oldest old during their final stageof life in this care context. Focusing our analysis on thesebodily aspects can bring new insights into issues related todeath and dying among the oldest old. There is also a need topay further attention to the talk of death (and euthanasia)among the old residents. What are they saying about theirown death and dying? And how are we to understand thisdeath talk in relation to everyday life in a nursing home con-text during the end-of-life?

There are other salient themes uncovered in the articlethat deserve some further attention within aging research.First, the theme of bodily alienation. This is an interestingsubject for further inquiry since the deteriorating health ofthe old person, the prolonged dying process and the limita-tions of daily life at the nursing home all constitute a threatto the old person's (physical and biographical) identity. Thenearness to death implies a complex relation between bodyand self, and bodily decline becomes entwinedwith a sense ofloss of identity. If we want to reach a more theoretical under-standing about the relationship between body and self, bodyand identity, death should be acknowledged as a reality inthe aging process (cf. Shilling, 2003). The results that haveemerged from the data in this study demonstrate anothermajor challenge—theoretically—as pointed out by Twigg,(2006): that of combining the themes of identity, subjectivityand power together with a more concrete embodiment illus-trated by dependency, decline, frailty and death in the fourthage (cf. Morell, 2003). The implication of this is that agingresearch should attach greater attention to the complexityandmultiplicity of meanings surrounding the personal exper-ience of body and embodiment at the end-of-life. Especially inwhat way the seemingly trivial aspects of the body in dailycare work and daily life also include the existential. By focus-ing the analysis at this bodily level it is possible to illuminatethe body aspects often taken-for-granted in personal care ininstitution-based eldercare, and it is possible to reach a deeperunderstanding of what it means to grow very old, becomingmore andmoreweak, and finally dying, and thereby be able toacknowledge the complex needs of the oldest old during theirlast phase of life. If we stop at regarding dependence, decline,dirt, decay and death as a “failure of the aging process”, wetruly will fail in reaching a more profound understanding ofthis everyday care practice during the end-of-life and what itmeans to very old, terminally ill persons, and for their exper-iences of body and embodiment.

Acknowledgements

This work –which is financed by a postdoctoral grant fromthe Swedish Council for Working Life and Social Research – isone of the projects affiliated to the Programme Grant 'Formsof Care in Later Life: Agency, Place, Time and Life Courseawarded by the Swedish Council for Working Life and SocialResearch to Prof. Eva Jeppsson Grassman. The author wishesto express her appreciation to Associate professor GöranJohansson and Dr. Magnus Jegermalm at Ersta SköndalUniversity College, the Department of Civil Society Studies;Associate professor Eva Reimers, Dr. Anna Milberg, Depart-ment of Social and Welfare Studies, and Professor EvaJeppsson Grassman, Dr. Mirjaliisa Lukkarinen Kvist, National

Institute for the Study of Ageing and later Life, LinköpingUniversity, for their helpful comments on earlier drafts ofthe manuscript. The author is also grateful to the anonymousreviewers for their valuable advice on the manuscript. A for-mer version of this paper was presented at the Death, Dying &Disposal 8th Conference in Bath, United Kingdom (September2007).

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Anna Whitaker holds a position as researcher with a postdoctoral grant atErsta Sköndal University College, Department of Civil Society Studies. She isalso a member of the research group at the National Institute for the Studyof Ageing and Later Life (NISAL) at the Linköping University. Her researchincludes aging and end-of-life issues with focus on institution-based elder-care, along with questions concerning the role of family/informal care. Theinterest in informal caregiving is being pursued at present through a studyof family caregivers to people with disabilities that she is conducting atNISAL, Linköping University.