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

Journal of Aging Studies 24 (2010) 96–104

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Journal of Aging Studies j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / j a g i n g

The body as existential midpoint—the aging and dying body of nursing home 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

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Article history: Received 29 June 2008 Received in revised form 28 September 2008 Accepted 29 October 2008 Keywords: Aging Body Death End-of-life Institution-based eldercare Nursing home

a b s t r a c t The human body has been the object of extensive attention in the social sciences, recently receiving increasing interest from social gerontology as well. However, the issue of old bodies and particularly the body in the fourth age of life remains relatively under-researched. The need to give emphasis to the subjective experiences of the oldest old during their final phase of life has been pointed out. This article is based on data obtained from ethnographic fieldwork carried out on a nursing home ward, and explores and analyses how the residents talk about and regard their 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 central entity through which the residents experience daily life, through pain, through the caring process, through diminished physical and cognitive functions, and as such constitutes the existential nucleus of their being. The article includes a discussion on how these experiences also elucidate the way in which the body is a mediator for issues seldom acknowledged such as existential needs. © 2009 Elsevier Inc. All rights reserved.

Introduction The human body is the subject matter of a massive exploration and theorizing in scientific writing (e.g. Turner, 1984; Featherstone, Hepworth & Turner, 1991; Williams & Bendelow, 1998; Cunningham-Burley & Backett-Milburn, 2001; Shilling, 2003). Issues concerning the aging body—in particular that of the oldest old—have not until recently been addressed in social gerontology (e.g. Öberg, 1996, 2003; Twigg, 2000, 2004, 2006; Gubrium & Holstein, 2000; Faircloth, 2003). From a general point of view, marginalized and problematic bodies have had (and still have) a peripheral position in the theoretical discussion (cf. Hallam, Hockey & Howarth, 1999). This indifference to the body in the so-called fourth age is often explained by the deeply rooted ontological dualism between body and self (soul) (e.g. Öberg, 1996; Shilling, 2003; Twigg, 2006) that has permeated sociology and social gerontology. In separating the subject of aging from geriatrics, from biomedical reductionism and the negativities of bodily aging, social

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gerontology has (rightly) stressed the cultural and social perspectives and supported the positive images of aging; e.g. the “successful aging” (Hughes, 2000; Tulle-Winton, 2000; Twigg, 2000; 2004). Not to run the risk of cementing stereotype images of older peoples' bodies as simply frail and dependent, aging research has been reluctant to address the actual body in old age (Twigg, 2004). Social gerontology has also been accused of avoiding not only the aging body but also the dying body among the oldest old. Clark and Seymour (1999), for example, assert that gerontologists are so occupied with the positive aspects/images of aging that they seem to have forgotten about the fact that (old) people also die (cf. Twigg, 2006). Twigg (2000) points out, moreover, that the constant emphasis on positive accounts of body aging becomes troublesome when we confront the more negative aspects, such as: ... dirt, decay, decline and death—and it is precisely these negativities that lie at the core of some at least of the experience of aging, however much positive accounts may wish to downplay them (2000, page 7). In recent years, aging research has taken a greater interest 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), although mostly linked to the third age. A common subject for inquiry has been the relationship between external appearance and internal identity; how physical manifestations of growing old are perceived, constructed and managed, and what impact they 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 gerontology towards more specific body-related perspectives also of the fourth age (e.g. Gubrium, 1993, 1997; Becker, 1994; Magnússon, 1996; Gubrium & Holstein, 1999; Twigg, 2000; Phinney & Chesla, 2003). In her study on the body and bathing in community care, Twigg (2000) illuminates the concrete and mundane aspects of the aging body as older people receive personal care in their own homes. Phinney and Chesla (2003) have studied the way in which dementia is experienced in and through the lived body. Comprehensive ethnographic work by Gubrium (1993; 1997) and Magnússon (1996) describe the so-called bed-and-body work and the relation between bodily images/perceptions and the daily routines in nursing homes. Gubrium and Holstein (1999) have reported on how the nursing home and its everyday practice—discursively—shape and give 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; the subjective bodily experiences of the old person remain relatively unknown. This article aims to explore nursing home residents' experiences of their own aging and dying bodies by focusing on the link between body, aging and death in an institution-based eldercare context. Drawing on residents' personal accounts, this paper intends to offer an empirical contribution to this field. I also wish to bring up central issues of importance for future research. The main questions of the present analysis are: How do old residents describe/talk about their bodies? What does the body mean to them and to their experiences of daily life in the nursing home ward? What role does the body play as an existential condition during the endof-life phase?

The aging and dying body in end-of-life care Decline and death are unavoidable aspects of the aging process, ultimately a basic human—as well as a bodily—experience (Shilling, 2003; Twigg, 2004). For aging and dying are not only a physical but also an existential, spiritual, social and psychological process. The hospice and palliative care context has more than any other paid attention to these dimensions. Since nursing homes or other forms of residential care are gaining importance as places of death, and eldercare to a large extent consists of end-of-life care (Gubrium, 1993, 1997; Froggatt, 2001; Seymour & Hanson, 2001; Field & Froggatt, 2003; Katz & Peace, 2003; Pleschberger, 2007) and the focus of this article is on the final phase of life, it seems appropriate to direct some attention to research on the hospice and palliative care movement and its influences on the care of the terminally ill along with eldercare. Since the 1960s, the hospice movement has presented an entirely different idea of care of the dying (Saunders, 1997; Saunders & Kastenbaum, 1997), which together with the wide-

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spread principles of palliative care, has completely overshadowed the ideological perspectives of care policy and care research (NBHW, 2000; 2004; SOU 2001:6) and recently also reached the eldercare field (e.g. Katz & Peace, 2003). This ideological turn represents an unavoidable criticism of the socalled ‘modern death’ (Walter, 1994), dominated by a medical view of sequestration, institutionalization and professionalization (cf. Giddens, 1991; Kellehear, 2007). With its holistic approach, the hospice movement has made significant contributions to loosening up the strict dividing lines between the medical and the social perspectives, also with regard to the body. The declining individual has attained a more central position in his/her own death drama, has become “reempowered” and regained control over the process of dying, now with an increasingly informed possibility of making wellgrounded decisions about medical interventions as well as existential matters. The dying individual's own wishes and feelings have taken precedence over standardized care routines and interventions (Walter, 1994; 1996). Death and dying is now about body and soul (spirit), the dying individual and his/her family. The pain/suffering related to dying can be existential/spiritual as well as physical. Self-esteem, autonomy, integrity, quality of life and dignity are important aspects. The dying body is no longer reduced to an arena for physical symptoms, pain or medical interventions. Experiences of various symptoms (e.g. fatigue, difficulty in breathing, constipation, xerostomia, lymph oedema, loss of appetite, etc.) and other bodily changes are ascribed significance for the maintenance of the self and identity of the dying person as well as for the maintenance of social relations (e.g. Rydholm & Strang, 2002; Friedrichsen & Erichsen, 2004; Sand & Strang, 2006). However, this image of the hospice and palliative care movement has not remained unchallenged. It has been criticized for being an exclusive form of care for a limited targetgroup 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 far too idealized view of death and dying (e.g. Seale, 1995; Clark, 1999; Sandman & Woods, 2003). While hospice and palliative care has been associated with the “good” and the “dignified” death, the institution-based end-of-life care offered in hospitals and nursing homes still evokes the image of the “poor”, “undignified” and “shameful” death (Howarth, 1998; 2006; Magnússon, 2004; Kellehear, 2007). The critics further argue that this “heroic” death role—as described above—is unrealistic, since most people die in a lingering process from complex conditions seldom diagnosed or considered as “terminal”. Consequently, they don't have access to or the opportunity of having a “good death” (cf. Seale, 1995; Field, 1996). Various aspects of body and embodiment are still neglected in practice as well as in research (e.g. Lawton 1998; Street & Kissane 2001). Lawton (1998), for instance, argues that despite its explicit aim of opening up and humanizing the care of the dying, hospice care actually disguises the negative aspects of the dying body. Issues of dirt, decay, disintegration and smell are rarely, if ever, written about by hospice professionals or covered in media representations of hospice care. Rather, they are ‘glossed over’ as ‘symptoms’ requiring ‘control’ (1998, page 132).

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So, Lawton (1998) argues, death and dying is no longer taboo, but some of its physical disintegration is, such as the dead body itself (Komaromy, 2000). This has been overlooked in research on end-of-life care. Method This article draws on comprehensive ethnographic fieldwork carried out on a nursing home ward in Stockholm. Seven months of participant observation were combined with numerous informal conversations with residents, staff and visiting family members/relatives. This methodological approach facilitated analytic triangulation, based on data from the nursing home residents, family members, and staff. The study ended up with a broad spectrum of results concerning the daily life of the residents; the relationships between families and the staff, the respective roles assumed in the events surrounding the dying process, and the extent of family involvement, to mention a few areas (Whitaker 2004a, 2009). Here special attention is paid to the experiences of the residents, based on the informal conversations and observations. During the period of study the ward had about thirty residents, the vast majority of them women (25), aged 79 to 101. Many had lived there for several years, some up to five and a few for as many as ten. All of them were severely impaired physically and/or cognitively. In the eyes of staff and relatives they were terminally ill or in their final stage of life, while not necessarily in the final process of dying. Seven residents died during the study. The topic dominating conversations with the residents was their experiences of the body, its decline and the approach of death. It was quite obvious that they wanted to share their experience of growing very old, the consequences of becoming more and more dependent and the waiting for the final death. It is important to note that quite a few residents were severely demented and confused, and consequently had difficulties in expressing themselves adequately in words. In our conversations their bodies were constantly present, not only as a topic of conversation but also through the combination of verbal and body language. The residents' talk about the body was often coupled with exposure of various parts. I did not interview the residents, but let them decide the topics of conversation. Often the conversations did not last for more than five minutes at most, due to the residents' ill health and fatigue. The conversations were not tape-recorded. They were informal conversations under-taken naturally during the visits to and observations on the ward, and summed up as part of my field notes. Immediately after a conversation with a resident, I went to a nearby staff room to put down the whole conversation as I recalled it. I recorded not only what was said in words, but also gestures, body language and other observations such as the resident's state of mind, health condition, clothing, etc. In this respect there is every reason to be selfcritical and reflective (Maxwell, 1992). Did I remember rightly what happened and what was said, in what order and in what manner? Could my memory be at fault? I sought to attain such exactness as far as possible in these circumstances, or to quote Wilcott (in Maxwell, 1992, page 286), “I try to record as accurately as possible, and in precisely their words, what I judge to be important of what people do and say”. Maxwell (1992, page

286) refers to this primary understanding as descriptive validity. A selection is of course inevitable since it is impossible to write 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 typed my field notes and scrutinized them repeatedly in order to sort out and clarify essential themes and patterns. In subsequent stages, key categories and processes were identified. In qualitative design and the inductive approach, the observed actuality ideally generates concepts and categories for the analysis. I discerned several central themes and some distinct manifestations of the residents' personal experiences of the body. Of central interest in a qualitative study like this one is the validity or trustworthiness (see Mishler, 1990) of not only 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 and how I interpret these. Ideally the interpretive accounts should be “grounded in the in the language of the people studied” (Maxwell, 1992, page 289), but in providing a valid account of individuals who lack such assessable language, such as the residents with severe dementia, the interpretive validity merges with the theoretical validity. This means that I have reserved for myself the right to not reduce the analysis and the interpretative work to be an understanding that solely is valid to the individual resident, but rather one that goes beyond the more concrete descriptions, words, concepts, and interpretations made by the residents. However I have been particular about having grounded my interpretations in enough data (informal conversations and observations) to support my claims, and I have throughout the analysis adopted a selfcritical approach which could be called reflexive interpretation (Kvale, 1989), meaning that I continuously have examined and questioned my own interpretations. Findings Five distinctive themes were found regarding the way in which the residents talked about their bodies: 1) the incapable body, 2) bodily needs–bodily dependence, 3) bodily change and alienation, 4) the inevitable death of the body and 5) body stories and “body wanderings”. The themes overlap to a certain degree and all five themes are very much imbued with the proximity to death. However, aging is not only an embodied process; it is “emplaced” as well (McHugh 2003). Therefore, a brief description of the nursing home is appropriate, since it illuminates crucial contextual features shaping the residents' experiences of body and daily life. It is, however, not my intention here to give a comprehensive analysis, but rather a ‘temporal and spatial sketch’ of the nursing home order. The body in institutional time and space A full grasp of the residents' bodily experiences must necessarily take into account the institutional characteristics embedded in the physical environment and in the everyday structures (cf. Gubrium & Holstein, 1999). The aging and dying process is very much restrained both temporally and

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spatially by the materiality of the institution (cf. Twigg, 2000); its organization and everyday routines, working schedules and care practice, still predominantly task-oriented and revolving around the residents' bodies, through dressing, undressing, showering, washing, changing diapers and catheters, 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 of suffering and loss, isolation and loneliness, stigmatization and alienation, all features frequently associated with institutions (cf. Goffman, 1991; Gubrium, 1993; 1997), but importantly, it is also a place of comfort, relief, a community of caring, safety, closeness and inclusion, features often related to the social meaning of home (Magnússon, 1996; Whitaker, 2004a; Twigg, 2006). The two major features embedded in the overall experience of the setting were waiting and the omnipresence of death and dying. The nursing home was regarded as “the last abode in life”. The residents used different names for it, but the meaning was the same; this is a place where old, sick people—like themselves—come to die. The nursing home is therefore characterized 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 reluctance among the residents. The experiences of the omnipresent dying and death are linked to the health status and care needs of the residents in this specific ward. The residents were highly aware of their conditions, and often described themselves as impaired or in poor health, getting worse. The same assessment was made by staff and family members, who described many of the residents as being in a “living-dying phase” (Whitaker, forthcoming; cf. Froggatt, 2001). The borderland between living and 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 place where the residents “come to die” rather than a place where they “come to live until they die” gives meaning to the embodied experiences. The institutional features reinforce the image of bodily decline (Whitaker, 2004a; cf. Gubrium & Holstein, 1999). Another emerging aspect of the temporal and spatial order of the nursing home is the residents' ‘small world’. Their personal territory was to a great extent restricted and reduced to a very limited space. A bed, a bedside table, a windowsill with flowers and a small area around constituted the entire living space of each resident. Health permitting, the day room, corridor and veranda could bring about a somewhat more extended life sphere. The concept of time space (Hägerstrand in Asplund 1983) encapsulates this limited room, spatially and temporally, and how the world has shrunk to the boundaries of the body. These dimensions and experiences of the nursing home and the aging and dying process elucidate the intimate link between the place and the body, and that a considerable part of the residents' daily life is directly constrained to the body. The incapable body When illness, decline, physical and cognitive impairments of various kinds first appears in old age, one could make the

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claim that it is a natural marker of the end-of-life rather than a disruptive event in the middle of it. However, I found that several of the residents—despite great age and despite normative expectations of the typical/normal life course— regarded their illness (dementia, stroke or cancer) and the move to the nursing home as a very disruptive event; an actual and unexpected biographical disruption (cf. Bury, 1982; Williams, 2000; Whitaker, 2004b). Impairment, illness or physical/cognitive limitations had literally taken over the residents' lives. They often expressed aggravation and frustration over the incapable body, and about the loss of control. Gradually lost functions are a sorrow that has a huge impact not only on the self-esteem and personal identity, but also on the physical state as fatigue, pain and suffering (cf. Parkes & Markus, 1998; Hurd Clarke, 2001). “It's a pity not to be able to see the beauty of the world anymore,” a man with severe visual impairment sadly observed one day. The aging as such arouses feelings of grief and distress. Here Isa, 99: “No, I feel sad …” “Why are you sad?” I ask. “Well … I'm so old … and … you'll see for yourself when you grow old … then you easily get sad now and then.” She leans back to gaze out of the window. “I think I need to rest a bit, if I may?” Illness, weakness, pain, and most of all the care work occupied most of the residents' waking hours. They often commented on hurting limbs or discontinued capacity. Agnes, 92, and Sigrid, 89, I found sitting at a table in the corridor one morning: Sigrid yawns, “I feel old and tired, and I had a bad night last 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 that her lips are dry. Her eyes are sleepy and filled with tears. “I need to get to an examination room.” she says suddenly. “Examination?” “Yes, so I can get well again. That's what I want.” Beyond Agnes' complaints of hurting limbs, in the midst of confusion and by an impossible wish, it is also possible to trace a message of great significance concerning her present situation and condition, her existence. She asks for a change, she wants to get well. The ever presence of dull pain was common among the residents. Despite an abundant use of painkillers and other analgesics, 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 or fatigue was just as usual. “I am so tired. I think I need to rest a bit” was a recurrent line after a few minutes of conversation. On the whole the residents perceived their bodies as being incapable and beyond control in a number of ways. For example, not being able to control bodily functions such as urine and feces led to feelings of shame, embarrassment, humiliation, indignity and frustration (cf. Twigg, 2000; Widding Isaksen, 2002).

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Bodily needs–bodily dependence The nursing home residents were in great need of roundthe-clock help, care and supervision. This unavoidable need is associated with dependence and various restrictions. The need for personal care represents an unwanted life transformation, and constitutes an unpleasant marker of increasing dependence and constricted autonomy (cf. Becker, 1994; Twigg, 2000; Nordenfelt, 2003; 2004). These persons' ability to manage for themselves and control their days is severely limited by the institutional order, and by their illness and diminishing physical and cognitive functions. Their poor health together with their need of—as well as dependence on—care turn their bodies into an “arena for care work” (cf. Magnússon, 1996), and in some quotations the residents express a strong sense of their bodies now belonging to the staff. If I say something ... or if I say no, they [the staff] do what they like with me anyway… (Oscar, 87). This unavoidable dependence contrasts sharply with their former independence and autonomy: Why should I have to lay here useless and helpless, I who always was so healthy and cared for both others and myself! (Lilly, 86) Others could joke about it and express a kind of acceptance, but as one woman said: “Whether you accept it or not, you really don't have any choice”. Dependence, however, was not always considered the worst of things. Some could certainly consider the dependence as sad and unpleasant, but also as a necessary evil that simultaneously could generate feelings of safety, security and comfort. “Oh, they take good care 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 my house, it's good to be here”. When dependence was set against the vulnerability and the actual needs of help and care, it not seldom came out as subordinate. In their study on life after ninety Bury and Holme (1991) suggest that we should see dependence as an unavoidable aspect of life, irrespective of age, and that it involves a complex dynamic of options and compulsions. We need to acknowledge 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 between power and vulnerability in later life, autonomy and dependence should be understood as complementary, as co-existing instead of as opposite poles (cf. Small et al., 2007). Bodily alienation—the changed body In the conversations the residents saw their bodies as strangely altered and constantly changing. The bodies had turned “wrinkly, skinny, ugly, and even stinky”, as one of the old women put it. They sometimes described their bodies as strange 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]. I can't believe it's true, how old I am, and wrinkly, and dirty

… No, not dirty but … Do you think I'm wrinkly?' she asks suddenly. “Well, one can see you've lived a long life, but I find wrinkles beautiful,” I answer carefully. She laughs. “Do you? Well I don't know about that…” To maintain self-respect, personal identity and dignity in the face of decline and death, several of the residents articulated an ambition to take care of their bodies and their physical appearance, presumably as a contrast to the reigning image of frailty and death on the ward, but also as an expression of resistance against the aging process. The women were slightly more concerned about changes in their physical appearance than the (few) men in the ward, who focused more on aspects like their loss of sight and/or hearing, mobility or memory. They were all careful about having their teeth or dentures well cleaned, and their nails well tended. It was also important to many to be well dressed, to wear make up; in short, to look good and smell nice as long as possible. So the residents didn't completely surrender to their bodily decline, even though they mostly expressed acceptance or resignation. What do these experiences of the ‘body in change’ mean for self-identity? On the one hand, the aging process represents a threat to identity, in particular to physical and biographical identity (cf. Nordenfelt, 2003; 2004). On the other hand, residents emphasized that the body alone does not represent their true identity/self and personality. An example that illustrates this very well is Marianne: “There are no limits to human suffering” [she sighs] … (pause) … “This … look here!” [She lifts her arm and slaps the 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. She has and is her body. But it is also possible to trace an experience of separation, a division between body and self, which she also links to her feelings of suffering. But this does not in any simple way imply another dualistic distinction between the body and the self. Like Marianne, the residents sometimes talked about their aging and dying process—with decline, impairment and finally death—as if they refused to identify themselves with their bodies (cf. Goffman, 1990; Featherstone & Hepworth, 1991). At the same time the aging and dying process not only masks or threatens their sense of self; it is in fact a threat to their very existence. Facing serious illness, the relationship between body and self becomes blurred (Frank, 1995; Shilling, 2003). Bodily losses through illness and impairment, for example dementia, Alzheimer's disease and stroke, also involve a loss of self, with profound impact on 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 residents and often linked to their body experiences. These persons not only have to handle illness, impairments or disabilities; they are facing the end-of-life, their own demise. Several described their condition/situation as “slow dying”. The prolonged process 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 extreme fatigue, turning into “skin and bone”. “You wither away day by 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 you grow old! … Actually, I just want to die as soon as possible” (Marianne, 85). For some the death wish was genuine, time for departure, life consumed. “I think they should let me die now, when I'm nearly 100 years old!” (Iris). For others the wish was rather 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 way I imagined it would be. (Gunnar, 89) Some gave veiled hints at euthanasia and that they rightly should have control over their own death: “How long does it take to die if you stop eating and drinking?” An interpretation is that these statements derive from lack of power in relation to the restricted nursing home life, at the dependence and feelings of indignity. But the crucial factor is linked to their bodily experiences of a prolonged process of disintegration and its consequence, dying. Death and dying also arouse existential questions about meaning. The most central question was not Why me? or Why now? but Why this way? That question links directly to the bodily process of aging and dying and encapsulates many issues of existential character raised in our conversations. There were also questions about conditions beyond the end-of-life and death of the body but closely related to personal identity and sense of self: What happens to me when I'm dead? Will anyone come to my funeral? Will I be remembered?

Body stories and “body wanderings” So far, the themes presented have shown how the state of their bodies preoccupies the residents' thoughts, and that they obviously want to talk about their bodies and their ill health (Becker, 1997; Hydén, 1997). According to Frank (1995), the purpose of illness stories and telling is twofold. It is personal and it is social: Stories have to repair the damage that illness has done to the ill person's sense of where she is in life, and where she may be going. Stories are a way of redrawing maps and finding new destinations. /…/ Stories of the illness have to be told to medical workers, health bureaucrats, employers and work associates, family and friends. Whether ill people want to tell stories or not, illness calls for stories (Frank, 1995, page 53). The storytelling is a way of compensating for the damage caused by the illness. Furthermore, these stories are coming through the body experiences (cf. Frank, 1995). When people describe their bodily illness or impairment, their bodies contribute 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 than the spoken story (Frank, 1995; Hydén, 1997). Frank (1995)

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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 the body when talking about it, they also illustrated their words with an expressive body language. Those who had lost their ability to talk or who were severely demented used body language as their main manner of communication and a very expressive one. One example is Elin—a 94-year old demented resident—who often reached out her arm without words as if to say she wanted me to touch her, see and feel her skin and different body parts. I often let her bring me along on what you might call a “body wandering”. The following excerpt from the field notes illustrates such an occasion: She bares her arm, takes my hand and puts it on top of a bruise, looks at me and then lowers her eyes. I gently pass my hand over the bruise and say quietly: “Oh, what happened here?” She keeps silent, takes my hand again and puts it to her cheek. Her face is wrinkled and her mouth without teeth. Crust in her face and matter in her eye. Thin and transparent. I fondle her cheek. She says something inaudible, for a long time keeps on murmuring something impossible to make out. Then after a while she says with an unexpectedly strong voice: “And what noow?” You may divine, from Elin's body telling, a number of events worth sharing though hard to read and put into words. Besides the need for confirmation, warmth and touch, my very personal and cautious interpretation is that she is telling a story of her body's condition, its change, its looks and its pains. The expressive final question adds another dimension to her body tale. It might exemplify what Frank (1995) states about the story as recreating a map of life and destination; where am I headed, what is going to happen to me? In all her confusion, Elin may be trying to comment on and handle some vital and eternal queries. My purpose in this section and with the example of Elin is to elucidate a subtler body theme; the body as a tool for communication. As a contrast to the experiences of the incapable body, and the body as an arena for professional care, the residents clearly expressed—in words and emotions—a need of body contact and of confirmation as well. Here, physical and emotional needs should not be confused with the instrumental and task-oriented “bed-and-body work”. The body is also an arena for communication, confirmation and touch, though this is seldom paid attention to in the institutional eldercare context. Concluding discussion In the light of the research referred to in the introduction to this article, there is every reason to problematize personal accounts of the aging and dying body as well as paying attention to various aspects of the body and embodiment during the end-of-life phase. A common (and also reductionistic) image of the body in the so-called fourth age is the frail, dependent and disabled body, the body in decline. Twigg (2006) argues that this image derives from a literature that is “written from the outside”, that is “objectifying, distant, often couched in the language of professionals and policymakers” (Twigg, 2006, page 50). In this article I have tried to bring to the fore

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the personal experiences of body among very old nursing home residents in their twilight years. This attempt to shift perspectives has not altered the image of ‘the declining body’, which on the contrary seems rather to have been confirmed by the themes and results presented. However, beyond the accounts of decline and loss of functions, and besides the fact that the body inevitably undergoes a process of ill health and physical decline, and needs to be taken care of by others, it is possible to discern a complexity and multiplicity of meanings surrounding the personal experience of body and embodiment at the end-of-life. I want to conclude this article by first briefly summing up the main findings, followed by a discussion based on the conclusions that can be drawn. Finally, I will raise some central issues of importance for future research on the aged-body. First, the findings unveil the importance of contextualizing the personal experiences of the body in the so-called fourth age. The nursing home as residence encompasses an inherent cultural ambiguity of being a home and an institution, a place of both living and dying. A major feature embedded in the overall experience of the setting was found to be the (omni) presence of dying and death. The uncertain and vague dividing line between living and dying, which partly reflects the dying trajectory of the oldest old, creates a sense of uncertain waiting. As the findings show, this contributes to the residents' perception of their lives as of inferior quality. Additionally, it illuminates that the residents' everyday lives are continuously and inescapably centered on the body. The experience of aging and dying is not only illustrated by the sharp change from normal everyday life that is associated with institutional life, but also by the loss of identity through physical and cognitive decline. Especially through the omnipresence of pain, fatigue and the incapability of managing for themselves, but also through the staff's care work, the residents' experiences reveal a high degree of corporeal awareness. Since the body was experienced as constantly changing and declining, the body becomes a marker of time. This importunate place of the body in the residents' everyday life arouses varying reactions and emotions. The residents expressed sadness, grief, aggravation and anger at their loss of physical and cognitive functions and at the continuous changing of the body. It is also possible to discern acceptance and resignation in some of the quotations; that they have surrendered to physical destruction as a part of life, of growing old. In some of the examples, residents also gave expression to the feeling of their bodies no longer belonging to themselves, but instead being owned by the staff. The findings disclose another dimension of the body experiences as something more than physical and cognitive symptoms. Pain, weakness, fatigue, physical and cognitive impairments can also be understood as “the body's communicative interjection into social life”, to quote Seale (2001, page 106). Through their bodies the residents call for a care consisting of bodily attention, confirmation and touch that goes beyond the instrumental and task-oriented ‘bed-and-body work’, but the body also performs the important function of a tool for communication, especially when language does not suffice. Besides the centrality of the body in everyday life, the omnipresence of and proximity to death gives cause for paying specific attention to the body as a mediator for essential

existential issues. The findings clearly illuminate the existential condition under which the residents live, and in what way the existential issues are embodied in the aging and dying process of the old. The most important and frequent existential question found in this study is, Why in this way? This question partly suggests powerlessness before the irreversible aging and dying process, and partly is an exhortation about the way in which we take care of the oldest old during their final phase of life. The overall picture conveyed is that when the bed-and-body work carried out by staff is not going on, the residents are most of the time left alone with themselves and their bodies to deal with difficult existential questions. In this life phase, bodily decline is therefore not only a temporal but also an existential marker of dissolving identity and fading life. The body themes presented illustrate the way in which the residents' experiences vary from the very mundane, trivial aspects of the body to the more essential and existential dimensions. This does not mean that these aspects are separated from each other. On the contrary, the seemingly mundane and trivial, the taken-for-granted and the so-called dirty work’ of changing diapers, washing, taking care of urine and feces, rather contains or is intertwined with the more existential dimensions; not only the meaning of dignity, preserved identity or dependency, but in what way the body functions as a tool for communication and as a mediator for existential issues. These things taken together—the contextual features of the nursing home and the inescapability of the body, bring to the fore the body as an existential exclamation mark over this life phase and the care context. Additionally, these results exemplify the various dimensions that Bury (1982; 1997) ascribes to the concept of ‘biographical disruption’; the disruption of everyday life, the confrontation with pain, suffering and death, a new attention towards the body, its condition, pain and dysfunction. This biographical disruption also brings on a fundamental reconsideration of the life course. Understanding illness, impairment and death as a disruptive event challenges the normative idea that illness, impairment and death in old age because considered ‘“natural”’ is therefore “easier” (cf. Howarth 1998). The findings presented can be summarized in three overall patterns: First, the body has failed/betrayed the old person and is the cause of the nursing home placement and the current situation. Secondly, the body has become an alienated ‘thing’ that needs to be taken care of—by others. In the third place, the body is simultaneously the corporeal and central entity through which the old residents experience their daily life, through pain, through the care work, through diminished physical and cognitive functioning. One conclusion that can be drawn from these results is that the body is central in the spatial and temporal order of the nursing home and as such constitutes the existential midpoint of the lives of the old residents. It is through the body that they experience, suffer and ‘live’ their lives. Another conclusion from the results is that it is not death but the bodily decline and disintegration (before death) that the old persons fear most (cf. Lawton, 1998; Twigg, 2000). The ‘fearing life—longing for death’ theme in my data seems to be closely linked to the residents' experiences of the irreversible bodily process of slow and prolonged dying and of the present situation as an unworthy, undignified life phase. These conclusions help make the residents' wish to die comprehensible. However,

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more attention needs to be paid to the meaning of the body and embodiment among the oldest old during their final stage of life in this care context. Focusing our analysis on these bodily aspects can bring new insights into issues related to death and dying among the oldest old. There is also a need to pay further attention to the talk of death (and euthanasia) among the old residents. What are they saying about their own death and dying? And how are we to understand this death talk in relation to everyday life in a nursing home context during the end-of-life? There are other salient themes uncovered in the article that deserve some further attention within aging research. First, the theme of bodily alienation. This is an interesting subject for further inquiry since the deteriorating health of the old person, the prolonged dying process and the limitations of daily life at the nursing home all constitute a threat to the old person's (physical and biographical) identity. The nearness to death implies a complex relation between body and self, and bodily decline becomes entwined with a sense of loss of identity. If we want to reach a more theoretical understanding about the relationship between body and self, body and identity, death should be acknowledged as a reality in the aging process (cf. Shilling, 2003). The results that have emerged from the data in this study demonstrate another major challenge—theoretically—as pointed out by Twigg, (2006): that of combining the themes of identity, subjectivity and power together with a more concrete embodiment illustrated by dependency, decline, frailty and death in the fourth age (cf. Morell, 2003). The implication of this is that aging research should attach greater attention to the complexity and multiplicity of meanings surrounding the personal experience of body and embodiment at the end-of-life. Especially in what way the seemingly trivial aspects of the body in daily care work and daily life also include the existential. By focusing the analysis at this bodily level it is possible to illuminate the body aspects often taken-for-granted in personal care in institution-based eldercare, and it is possible to reach a deeper understanding of what it means to grow very old, becoming more and more weak, and finally dying, and thereby be able to acknowledge the complex needs of the oldest old during their last phase of life. If we stop at regarding dependence, decline, dirt, decay and death as a “failure of the aging process”, we truly will fail in reaching a more profound understanding of this everyday care practice during the end-of-life and what it means to very old, terminally ill persons, and for their experiences of body and embodiment. Acknowledgements This work – which is financed by a postdoctoral grant from the Swedish Council for Working Life and Social Research – is one of the projects affiliated to the Programme Grant 'Forms of Care in Later Life: Agency, Place, Time and Life Course awarded by the Swedish Council for Working Life and Social Research to Prof. Eva Jeppsson Grassman. The author wishes to express her appreciation to Associate professor Göran Johansson and Dr. Magnus Jegermalm at Ersta Sköndal University College, the Department of Civil Society Studies; Associate professor Eva Reimers, Dr. Anna Milberg, Department of Social and Welfare Studies, and Professor Eva Jeppsson Grassman, Dr. Mirjaliisa Lukkarinen Kvist, National

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Institute for the Study of Ageing and later Life, Linköping University, for their helpful comments on earlier drafts of the manuscript. The author is also grateful to the anonymous reviewers for their valuable advice on the manuscript. A former version of this paper was presented at the Death, Dying & Disposal 8th Conference in Bath, United Kingdom (September 2007).

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