Journal of Aging Studies 23 (2009) 158–167

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Journal of Aging Studies

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Family involvement in the institutional eldercare context. Towardsa new understanding

Anna Whitaker⁎Ersta Sköndal University College, P.O Box 11189, SE-100 61 Stockholm, and NISAL, Linköping University, SE-601 74 Norrköping, Sweden

a r t i c l e i n f o

⁎ Tel.: +46 8 55 50 5066; fax: +46 8 55 50 5060.E-mail address: anna.whitaker@esh.se.

0890-4065/$ – see front matter © 2008 Elsevier Inc.doi:10.1016/j.jaging.2008.12.006

a b s t r a c t

Article history:Received 4 June 2007Received in revised form 9 November 2008Accepted 3 December 2008

This article focuses on family involvement and its various patterns and expressions in thecontext of end-of-life care in a nursing home. Based on analyses from an ethnographic studycarried out at a nursing home ward, the aim is to describe and analyze the conditions of agingand dying for the old residents, as well as effects on their visiting families and relatives. As insimilar research findings, it became clear from the study that families continue to visit andcontribute to the care of the old resident throughout the years, from the time of placement totheir demise, but that this involvement might vary both in content and in extent. However, itwas found that families' involvement (as well as their changing relationships and roles) isparticularly shaped by the very process of dying and lingering aura of death on the ward. Theanalysis presented in the article evinces the difficult — and in many ways impossible — role ofthe family in the institutional end-of-life setting, and discloses the various patterns andmanifestations of family involvement in this environment. Differentmeanings and implicationsof family involvement are discussed and highlighted.

© 2008 Elsevier Inc. All rights reserved.

Keywords:AgingDeathEnd-of-life careFamily involvementFamily careFamily relationsInstitution-based careNursing home

Introduction

The lingering— and still widespread— notion that families“abandon” their old relatives when they have moved into anursing home or some other residence for old people hasbeen proven a myth. Studies repeatedly show that familymembers continue to visit and even to contribute to the careof the relative (e.g. Gaugler, 2005; Whitaker, 2004; Lingsom,1997; Keefe & Fancey, 2000; Stull, Cosbey, Bowman, &McNutt,1997; Tobin, 1995), even though this contribution can onlybe comparatively limited in extent (Trydegård, 1998). In theliterature, this form of involvement, i.e. the retaining ofcertain caring tasks or at least a caring role, is denoted asinstrumental or personal caregiving. At an individual level,however, family involvement, family care and filial obliga-tions and responsibilities of various kinds have differentmeanings in different contexts and depending on thestrength of the relationship. In view of the fact that the staff

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is responsible for satisfying the main part of the old person'sneeds 24 h a day, the former caring role of the relatives ceasesto that extent to exist (cf. Nolan, Grant, & Keady, 1996). Thetransfer of practical responsibility also means a change in therelationship between the old person and the family. However,this does not necessarily mean that the relationship betweenthe old person and the relative(s) or the caring role comes toan end. But that involvement and care will take on othermeanings and possibly a more subtle and invisible character(cf. Bowers, 1988).

It is still quite common in institution-based care of thiskind to view the family's role as ‘visitors’ and to relegate theminto the background, a role accepted by many families(Sandberg, 2001; Andershed, 1998; Nolan, Grant, & Keady,1996). Simultaneously, an opinion becoming increasinglywidespread in recent years holds that family members andother relatives ought to be incorporated into the formal caresystem to a greater extent (e.g. Åkerström, 1996; Rolland,1994). Likewise, it is now more common for care units todefine their work by giving it a specific profile. “Support forfamily carers” is a suitable case in point (Andershed, 1998;Åkerström, 1996; Rolland, 1994; Friedman, 1992).

1 But generally, the old residents have their own rental contract for theirrooms or apartments. This change has meant a shift in the status of the oldresidents from being ‘patients’ to becoming ‘tenants/paying guests’,regardless what kind of institution they live in.

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The change from ‘institution’ to ‘residential home’ has alsochanged the status of visiting families, who no longer seethemselves as visiting an institution, but as visiting an elderlyrelative's new dwelling. Visiting hours and similar restrictionsare increasingly being relaxed and visiting families today haveother expectations as well, leading to their making demandswith regard to influence, participation and involvement in thecaring process (Whitaker, 2004; Andershed,1998; Åkerström,1996). In other words, the family seems to have gainedground by the change from institution to ‘home’.

Research on family involvement in nursing homes

Despite a notable increase in research interest in issuesconcerning family involvement within the institutional carecontext in the last decade, the knowledge gained is stillconsidered limited and inadequate (Pearson, Nay, & Taylor,2003; Davies, 2001). Studies on family involvement/family carehave tended to be very much task-based and focused on theinstrumental caring role (e.g. Trydegård, 1998), the family–staffrelationship (e.g. Dupuis & Norris, 2001; Gústafsdóttir, 1999;Nolan, Grant, & Keady, 1996; Duncan & Morgan, 1994), or howto promote family involvement (Tobin, 1995) and partnershipbetween informal and formal caregivers (e.g. Nolan, Lundh,Grant, & Keady, 2003; Shield, 2003). Other writers emphasizethe temporal aspect in the caregiving process and contributewithtemporal models from a carer perspective (Nolan, Grant, &Keady, 1996, 2003). But the temporal dimension has mainlybeen used in order to understand the ‘caregiving career’, ratherthan to illustrate the changing relations, roles, andmeanings forthe family. The literature on institution-based family care hasalso been criticized for being far too descriptive and lacking intheory (Roberto, Blieszner, & Allen, 2006). Now, familymembers' experiences from the nursing home placement/transfer have begun to receive increased attention (Davies &Nolan, 2003, 2004, 2006; Pearson, Nay, & Taylor, 2003;Fitzgerald, Mullavey-O'Byrne, & Clemson, 2001; Sandberg,2001).Gaugler (2005) stresses theneed topay furtherattentionto the various family roles following a placement as well as toother dimensions of family involvement that go beyond theinstrumental care, but studies with prospective longitudinaldesigns are needed to develop an understanding of shifts andchanges in family involvement over time (Gaugler, 2005).

The family situation in general and its involvement inparticular are — with a few exceptions — not explicitly relatedto the very presence of dying and death in the nursing home(Whitaker, 2004; Zarit, 2004) or to the existential issues arousedby the process of dying. It is now admitted that eldercare in anursing home to a large extent consists of end-of-life care(Froggatt, 2001; Seymour & Hanson, 2001; Gubrium, 1993,1997), and that the nursing home is formany residents their lasthome. In Sweden, there has been a marked shift in recentdecadeswith regard to the locationwhere people die. The end oflife has ‘moved out’ from hospitals to homes for the elderly orback into the family home. This shift is partly explained by amajor organizational reform of eldercare in the early 1990s andpartly by the extended services of advanced home care forterminally ill persons. Through the major 1992 reform ofeldercare in Sweden, the responsibility for nursing homes andthe long-term care of elderly persons was transferred fromcounty tomunicipal level and ‘special housing for elderly people’

became the official term for all such public institutions.According to Swedish official policy these “new” institutionsare meant to be as homelike as possible and regarded as theresidents' own housing. This ‘special housing’ is still, however, ofvarying character and offer services that differ in scope andintensity (Trydegård,1998, 2000)1. Another important influenceis the hospice care movement and its widespread principles ofpalliative care — a development not unique for Sweden(Saunders, 1997; Saunders & Kastenbaum, 1997). In the late1980s, only approximately 25% of all deceased persons inSweden aged 65 or more did not die in the hospitals, to becomparedwith 63% today, a majority of whom died in a nursinghome or some kind of special housing for the elderly. This isespecially true of the oldest old (80+) (NBHW, 2000, 2005).Similar figures apply to England and Wales (Davies & Seymour,2002; Froggatt, 2001) and to theUSA(Zerzan, Stearns,&Hanson,2000). In otherwords, ‘special housing’has become the place forthe careof the oldest old also in theirfinal phaseof life, and takentogether, the described changes have led to a greater awarenessamong the carers working there of their end-of-life role.

There is an extensive body of literature (often labeled‘nursing home ethnography’) on the nursing home as an in-stitutional setting (e.g. Stafford, 2003a; Hockley & Clark, 2002;Davies & Seymour, 2002; Diamond, 1992, 2000), wherein thelives and deaths of old men and women (Paterniti, 2003;Komaromy, 2002; Gubrium, 1993, 1997; Nyström & Segesten,1994) and the experiences of nursing home staff (Magnússon,1996; Diamond, 1992) are commonly considered. However, theexperiences of family and relatives during the end-of-life phase ofan old person in a nursing home remain relatively unknown. Theold residents in a nursing home face inevitable bodily decline,increasing frailty and finally, death. This aging and dyingprocess also involves the families and impacts upon theirrelationships, their changing (caring) roles and their involve-ment in this new context. Several writers recognize the need tointegrate the perspectives of both the caregivers and thereceivers of care (e.g. Clark & Seymour, 1999; Nolan, Grant, &Keady, 1996), and to represent both positions in a fair andcomprehensive way. For the same reason, we cannot separatethe discussion about family care from the reality that thosewhoreceive this care are also on their way to dying (Clark &Seymour, 1999; Kagawa-Singer, 1994). An important point ofdeparture for this article, therefore, is the link between familyties, aging and death.

Few studies account for family ties and family involvementin the end-of-life phase of old people in nursing homes. Thisarticle aims to describe and analyze family involvement inthis particular context. My point of departure is empiricalfindings that bring to light the complexity of these familyexperiences and reveal the various patterns and expressionsof family involvement.

Materials and methods

The article builds on ethnographic fieldwork carried out at anursing homeward in Stockholm. Seven months of participant

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observation were interspersed with numerous informal con-versations with the old residents, as well as with staff andvisiting relatives. Eighteen relatives/family members2 werefurther specifically interviewed about their experiences of thenursing home, the standard of care, the aging anddying processof the relative, and about their own involvement, visits andgiving of personal care. The interviewed family members wereof varied background, civil status, sex and age. Nevertheless, thesample of intervieweeswas chosen to partly represent differentkinds of relationships to the old person, such as spouse, sibling,offspring or other relative, but also friend or neighbor. In onecase, a legal guardian was interviewed, since a few of the oldresidents had no families. Interviewees were also chosen torepresent various levels of family involvement. For example,some came on a daily basis, while others visited regularly butless often. Two of the interviewees had not visited their oldrelative for a year ormore. Interviewswere also carried outwiththenurses andheadof staff on theward, six persons in all. Therewere about thirty residents in theward during the period of thestudy, average age 89, all severely impaired physically and/orcognitively. Most of them (25) were women and many hadlived there for several years, some up to five and some for asmanyas ten. The staff (and relatives) considered these residentsto be in their final stage of life or terminally ill, withoutnecessarily being in the process of dying. In total, sevenresidents died during the period of the study.

This methodological approach facilitated analytic triangula-tion, considering experiences from the nursing home residents,family members, and the staff. In its entirety, the study endedupwith a broad spectrumof results concerning the daily lives ofthe residents, the relationships between families and staff andthe roles assumed, the events surrounding the death, and theextent of support offered to families, to mention some areas offindings. However, in this article special attention is paid to theexperiences of the families and their involvement in thenursinghome context. The analysis presented is based on data derivedfrom interviews, as well as from informal conversations andobservations. The qualitative analysis progressed in severalsteps, strongly influenced by ethnographic approaches (Taylor& Bogdan, 1998) and grounded theory (Glaser, 1978; Charmaz,2002). Interviews and field-notes were perused repeated timesin order to sort the data and to clarify fundamental themes andpatterns. In subsequent steps, key categories and processeswere exposed and sensitizing concepts developed. In qualita-tive design and inductive approach, the observed actualityideally generates the concepts and categories for analysis, so asto arrive in an in-depth understanding of the family situation inthe nursing home setting. The enquiry led to identification ofseveral central themes and some distinct patterns andmanifestations concerning family involvement.

Before the presentation of family involvement, a briefdescription of the nursing home is appropriate, since it im-portantly not only constitutes the background to the families'experiences, but also illuminates crucial contextual featuresfound to shape the family involvement.

2 Family and relative as terms are used here in a broader sense, to alsoinclude friends and neighbors. In the article, I use both these termssynonymously.

The nursing home as the last place in life

To fully grasp themeaning of family involvementwe shouldtake into account some essential conditions of the nursinghome, such as the institutional characteristics embedded in thephysical environment and in the everyday structures androutines; but possibly even more, the various experiences andaspects connected with the aging and dying process.

The nursing home — an image of bodily decline and death

The nursing home encompasses suffering and loss,isolation and loneliness, stigmatization and alienation, but itis also a place of comfort, relief, a community of caring, safety,closeness and inclusion, features related to the social meaningof home and aspects often emphasized by the relatives. Yet, itbecame clear that one of the major features embedded in theoverall experience of the nursing home setting was theomnipresence of death and dying. The nursing home wasregarded as “the last abode in life”. Residents, staff andvisiting relatives all had different names for it, but themeaning was the same; this is a place where old people cometo die. For the relatives it was a place of contradiction, positivein terms of care but saddening in the encounter withoverwhelming bodily decline and approaching death, andtheir accounts are characterized by an immense ambiguity.Seeing all the frailty clearly tended to arouse anxiety amongthe relatives about their own prospective ageing and dying. Aman who regularly visited his great-aunt said:

… Now I'm used to it [the nursing home], it becomes likeany home, it becomes a routine, but I'm only human, sosometimes I get tired of it. But I try to overcome thatfeeling and force myself to come here, ‘cause I know thatone day, it could be me lying there somewhere, alone…But then, sometimes this feeling comes over me, anawareness of an ending, knowing that life is finite. Andthat can really get you down, and I think ‘Oh hell, am Igoing to be lying in bed like that all by myself, does it haveto be like this, is this as good as it gets?

On the other hand, the relatives also expressed feelings ofsecurity, community and inclusion. The nursing home is a placecharacterized not by either/or but rather by simultaneity. It isboth an institution and a home (cf. Stafford, 2003b), a place forboth life and death. This contradiction — or this “inherentcultural ambiguity”, to quote Stafford (2003a: 7) — arousesfeelings of reluctance as well as ease among the visitingfamilies. The following is a quote from a visiting daughter:

… You go in and get the feeling of being in a very special,odd world. That's what it is, and when you move throughthe ward … well, it's a strange blend of feeling at homeand something strange and artificial, as of course it mustbe … [sighs] … I certainly don't go there feeling “Howwonderful to be here again”. I enjoy leaving much morethan coming. But still, I feel assured …

Aging and dying

In discussing the health status and the needs of the oldperson in the interviews, concerns related to death and dying

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were frequently highlighted. Many families described — withresignation — the old person's health as poor, and gettingworse. They often considered the old person as being in a“living–dying phase” (cf. Froggatt, 2001). The borderlinebetween living and dying; between life and death is notobvious and not easily defined in this context, which partlyreflects the dying trajectory of the oldest old as slow andprolonged (Komaromy, 2002; Froggatt, 2001). Uncertaintyand vagueness at the end of life puts the family in quite anambiguous and difficult position. Relatives have to bothengage in the aging and dying process and at the same timelet go in preparation for the approaching end (cf. RisteenHasselkus, 2000). Being a relative to an old person living outfinal days for several years captures the relatives' experiencesof this life phase as uncertain and illuminates the ambiguousmeaning of time in this context. It also clarifies the veryexistential conditions under which the old persons and theirfamilies live. Being a relative of one at the end of life illustratestime as short. There is short time left together, a highlyuncertain length of time. Yet the interviewees might simul-taneously express the view that the old person had lived toolong, “she would be better off dying now;” “he should havedied when he had his stroke”. Images of the old person werereflected in expressions like “human decline”, “she's nothingbut a wreck;” “it's only the heart beating,” and “she barelyexists at all”. These descriptions suggested a view of thepresent life of the old person as meaningless, pitiful andwithout dignity. Simultaneously, they were all highly aware ofthe old person being in the final stage of life. The wish for theold person to die coupled with the actual slow and extendedprocess of dying generated a sense of waiting, an uncertaintyreinforcing the kinfolks' perception of an inferior state of life.This in turn creates an existential vacuum in which waiting forthe end becomes the main issue for both parts, and death isconceived of as the only rescue.

These experiences of the nursing home and the aging anddying process of old residents, briefly exemplified here, wereoverwhelmingly dominant in the interviews as well as in theinformal conversations with the residents. A conclusiondrawn from this is that it is not death, but the bodily dis-integration and unboundedness that the old residents andtheir families fearmost (cf. Twigg, 2000; Lawton,1998). This inturn seemed to have a great impact on the families' involve-ment and contribution.

Family involvement — from sparse visits to lifecompanionship

Due to the nursing home transfer and to the worseningconditionof the old person, different (caring) roles emerged inthe relationship. Within this setting, these roles (like therelationship) also change over time. The families were askedto describe their visits in detail, how often they visited, howlong they stayed and what they did together with the oldresident during their stay. Their descriptions make clear thatthese — apparently unobtrusive — visits entail a number ofvarious caring activities characterized mostly by a concern forand interest in the old person's daily routines and generalwelfare. Although the families' absence was more apparentthan their presence at the nursing home, their visits,involvement and care were significant, irrespective of the

frequency of visits. Categorizing families or describing familyinvolvement according to the frequency of visits or the extenttowhich they carry out certain instrumental caring tasks givesquite a distorted image of what relatives actually contribute,and more importantly, what the visits mean to the familiesand to the old people alike. The families' accounts reveal quitea web of various roles and tasks of care, but also a more subtleproximity and ambition to share the daily life of the oldperson. In the following, I present some thematic examples ofrecurrent caregiving ‘tasks’.

Sharing time, sharing meals

Visits represented emotional and social care (cf. Duncan &Morgan, 1994; Bowers, 1988), that is, being together or simplybeing there. Some visitors did not stay for long. These mainlydropped in, said a fewwords, andmade sure that nothing wasmissing from the closet or on the bedside table. Others simplysat or remained standing by the bedside and shared a mo-ment in silence, as this son:

Well, what can you do with a person who… You sit by thebed, hold their hand. A few years ago, she could still talk astream, you know, but then she got worse / …/ What Ido? I would call it consolation or something like that.

The families described an ambition not only to preservebut also to improve the old person's memory, talking andwalking. As one daughter said, “During my visits I try to bringmum back to life.” A daily visiting sister-in-law insisted that itwas extremely important to go on talking to the old person,“otherwise she just lays there while her mind and thoughtsfly away.” A man visiting his old aunt said that he tried to“exercise” her mind:

… and then we talk, I ask if she has slept well, how shefeels and when she has the strength to come home nexttime for a visit and … I try to make her talk about thefamily, all the relatives, and sometimes I try to exerciseher memory …

Another aspect of the sharing theme was sharing a meal,which could imply having coffee, going to a nearby café(if possible) or having dinner together. Visiting families wouldbring something to the old person to eat or drink. Theydescribed this as a way of contributing with at least something“extra”, something they knew the old person longed for andwould appreciate. Others would arrive when coffee or dinnerwas being served, just to make sure that the old personmanaged to get some food down. The symbolic content ofsharing a meal cannot be exaggerated. Eating together iscompanionship and pleasure; and it recalls and confirms therelationship. One of the interviewees described how she alwaysbrought Danish pastrywhen visiting her old friend, as she usedto “in former days”. A visiting spouse arrived at dinnertimeevery day, towatch the staff feeding his severely stroke-strickenwife. When asked why he chose this particular time of the day,he explained that they had been married for over sixty yearsand during all that time they had always eaten dinner together,every single day. He simply wanted to continue this routine —

even under these altered conditions.

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“Lighter bodily care”

“Lighter” bodily care was another common caring taskdetailed by the families. They might do the old person's hair,the nails, rub in some body lotion, give some massage, or puton some make-up. Especially spouses and adult childrendescribed this bodily care as very important, as a way ofmaking the old person look nice, and as a natural way ofsharing physical contact, of being close and intimate. Noteveryone could contribute with bodily care of this kind. To bephysically close to someone who is frail and/or in pain andsometimes unable to respond properly is not easy. The kind ofrelationship also affected the potential for closeness andinfluenced what sort of care could be offered. One visitingdaughter expressed with some sadness the aversion she feltto touching or giving bodily care to her old mother:

I wish that I could feel differently towards my mother…Put it like this, I really wish — since I can see how dry herskin has become — that I automatically felt like gettingher some really good body lotion and giving her a gentlerub to make her feel comfortable but … I don't want to. Ican't bring myself to touch her.

This complicated mother–daughter relationship causedemotional and physical distance to the extent that thedaughter perceived the body of her mother as repulsive.

Life companionship

One group, mainly spouses and adult children, whom I callcompanions for life, did not only visit; they truly shared the oldperson's daily life and existence. They often arrived at the verysame time each day and stayed formany hours, sometimes untillate. Often they could do no more than share the day of the oldresident. The ability and/or need to converse had long passed.Sometimes the visiting relativeswere themselves old and fragile,and theywere happy if they could come at all and be together. Inthe following quote, a visiting spouse describes his visits:

I usually get there by lunchtime. During after-lunch coffeeis also a good time to come. Then I make Siri presentable,so we get to touch each other, you see. And then we sitaround until … well watching TV. That's what we do, allthe time, it helps me relax. We used to go out for walksbut … nowadays I leave at five or five thirty or I choose tostay and watch the news. Then I say goodnight and giveher a hug and, well … it might seem a little monotonous… but life goes on as usual.

The normalizing tendency is obvious here. Despite theirunwanted separation, they try to maintain a constant routinetogether, as in the life they shared before the illness and thenursing home placement. As another spouse put it, “well, I'vebeen coming here for five years now … you know, if you'vebeen together since 1936, like we have, that's just how it is.”This is a pattern of long relationships, where illness,dementia, old age and the transfer to the nursing homerepresent an unexpected (and undesired) biographical dis-ruption (cf. Bury, 1982, 1997) and a significant life transition(Perkinson, 2003). “This is not how I imagined my old age”.

Beyond care

So, the involvement of the families that continue to visitand to contribute to the everyday care of the old residents isas much about being as about doing. The actual need wasobviously limited since the staff already carried out most ofthe care. The old person's frailty, fatigue, disorder, confusion,weakness and pain added to the caution, uncertainty, andsometimes distance showed by relatives.

However, this does not mean that the involvement was notimportant or meaningful to the families. The “light” work ofdemonstrating their caring found among families ismuchmorethan sporadic visits or instrumental/personal caring tasks. Myconclusion is that these visits and involvements should beunderstood as 1) a representation of the relationship, 2) aritualization contributing to continuity and coherence, and 3) away of maintaining and guarding the old person's identity anddignity. In the following, I illustrate these dimensions withempirical examples.

Family involvement — a relational representation

Family ties and family involvement rest on specific con-ditions of relationships, biographical history, filial negotia-tions and general considerations common to all relationships(e.g. Jeppsson Grassman, 2001; Finch, 1996; Gubrium, 1995;Finch & Mason, 1990, 1991, 1993). In the nursing homesituation, the actual relationships change a great deal. Notonly will the transfer in itself contribute to this change butalso the continually declining health of the old person. Infacing this change, the families try to maintain the parent–child relationship, the friendship, or the marital relationship,by visiting the old person at the new residence. The visitsthen represent the relationship. By coming, the visitorconfirms that the resident is a father, a mother, an aunt ora friend, and still has relational links outside the nursinghome. This has been found in several studies (e.g. Davies &Nolan, 2006; Gladstone, Dupuis, & Wexler, 2006) and iswidely acknowledged in the area of family care research.However, this process takes on quite a specific meaning inthe institutional context. Even though building on the past asa temporal dimension — as pointed out by Nolan, Grant, andKeady (1996), Nolan, Davies, and Grant (2001) — is essentialfor recognizing the nature and quality of relationships andinteractions between relatives and the old persons, itconstitutes only one of several aspects of relational main-tenance. One such aspect is accompanying each other, asalient theme among the couples. No matter what happenedin the past, or what will happen in the future, “till death usdo part” seemed to guide their commitment, due to themarriage knot. In other words, visiting implies staying withthe old person until the very end.

Several family members explained their involvement byreferring to motives such as love, responsibility, obligation,and repayment. Guilt and bad conscience were alsoembedded in these motives. Reciprocal family care is nothingnew (e.g. Nolan, Grant, & Keady,1996); but what emerged as anew theme in my data is the reciprocal dependence or inter-dependency. Quite a few of the interviewees made this clear inour conversations. One daughter firmly claimed: “I'm notvisitingmymother just because she needsme; I'mvisiting her

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because I need her.” Another womanwho visited her severelystricken sister-in-law several days a week confirmed:

I don't know what she gets out of it [the visits], but I thinkit's nice to keep her in my life, I need to see her. She was agood friend.

As illustrated in the quotations, this reciprocal depen-dence goes beyond or rather embraces all the other reciprocalaspects and motives. It highlights the relational foundation infamily caregiving and represents the emotional basis for thedaily visits of the companions for life. This finding challengesthe view of dependence and independence, especially theunbalanced dependence of the old men and women in thenursing home.

Maintaining the relationship rests heavily on the physicaland mental condition of the old resident. The sharing ofmemories and the prospect of being together until the end oflife are significant potentialities for the family's readiness toendure their involvement. Again, the old person's health iscrucial. Without reciprocity in the relationship, it is hard topreserve.

Family involvement— a ritualization of continuity and coherence

The nursing home transfer as a life transition means anadjustment and a change that ruptures former everydayroutines; but a newdaily life takes over after the placement andthe new routines become even more important due to thevagueness and uncertainty that characterizes this life phase(cf. Sankar, 1991). The visits families carried out were oftendescribed in terms of a regular routine or even of a ritual:“Since she moved in here [three years ago] we have come tovisit her every Saturday at 2 pm.” The families described theirinvolvement and caregiving in terms of order, regularity androutine: “When I arrive, first I usually /…/ and then I /…/After that I always…;” every time the same procedure, a kindof ritualization. Even if the families tended to reduce theirimportance and role — “That's all it is to it, I don't do muchmore than this…”— it contributed not only to the old person'swell-being and comfort, but also to that of the visiting family.This can be interpreted as a way of normalizing an abnormalsituation. Becker (1997) suggests that daily routines areimportant for the maintenance of continuity and coherence;recurrent daily routines structure and order people's lives. Thevisits and the care may play even a larger role for the families,by creating meaning and continuity in their own lives.

The visits thus have both a symbolic and a ritual meaning,besides their practical nature. They reinforce the feeling thatthe old resident is not alone, but part of a larger communitybeyond the nursing home. By contributing a sense ofcontinuity and trust in the solid routines of daily life, thevisits represent a promise of the continuance of life— despitethe nearness to death.

Family involvement — a way of maintaining and guarding theold person's identity and dignity

By visiting and doing these different caring tasks, thefamily tries to maintain and protect the old person's identityand dignity while awaiting and preparing for death. The

family is a guardian of dignity (Whitaker, 2004). Severalwriters mention that families commit to a preservation ofthe resident's identity (e.g. Gústafsdóttir, 1999; Duncan &Morgan, 1994; Bowers, 1988). However, this is no easy role toundertake. There are relatives who, for a number of reasons,do not want to engage, do not have the possibility or theability to be involved in this way. Family members oftendiscussed the old persons' situation in terms of ‘worthless-ness’ and ‘indignities’, their experiences and narrativesrelated to various aspects of dignity, linked to the concept ofdignity of identity (Nordenfelt, 2003a,b, 2004). The notion ofdignity is tied to our self-respect, and central components inthe concept are integrity, physical and biographical identity,autonomy and inclusion (ibid). To Nordenfelt this kind ofdignity is probably the most important concept when talkingabout illness, disability and old age:

A disabled person is often per definition a person withrestricted autonomy. And restricted autonomy normallyentails the exclusion from some communities / … / Withthe elderly there is an extra touch to this. Their disable-ment is often irreversible / … / The identity is for everdrastically changed (Nordenfelt, 2004:76).

The deteriorating health of the old person, the prolongeddying process and the restrictions of daily life at the nursinghome all constitute a threat to the old person's physical andbiographical identity, integrity and autonomy as well as his orher social inclusion. Almost everyone claimed that the oldperson no longer was the person he or she once had been.Several emphasized that the old person was nothing but ashadow of her or his former self. Similarly, the familiesinterpreted the old person's bodily disintegrating and dete-rioration as a complete loss of personal identity (cf. Twigg,2000). Relatives therefore placed a great deal of emphasis onportraying the old person. Portraying was a way for thefamilies to make the old person “come alive,” as they said,their portrayals an obituary of someone still alive. Dementia,confusion, forgetfulness and other states of distressed healthmight further destroy the old one's ability to represent her orhimself. By portraying and sketching the old person'spersonality and existence, the relatives could preserve oreven strengthen his or her individuality.

These experiences elucidate the way in which the agingand dying process, with its bodily disintegration, not onlyconstitutes a threat against the personal identity and dignityof the old resident, but also an obstacle for the family tocontribute to the care. Their ‘guardianship’ is not aimedprimarily at the staff, but rather at the defenselessness of anirreversible aging and dying process.

The “archaeology of kinship care”

Family involvement is a representation of the relationship,a way to create meaning and continuity, and a way to guardthe old person's identity and dignity. This said, it is necessaryto realize that the families' involvement and ‘guardianship’has a limited scope, since getting its special form from theinstitutional context. This deserves some closer attention.This dimension of family involvement is linked to the families'‘impossible’ role. On several occasions, visiting family

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members wanted to show me some part of the old person'sbody, how she or he was dressed or how the bed was made.Their observations told me how they interpreted the oldperson's health and the care given by the staff. The followingfield note stems from a situation when a visiting daughterwaved to me, asked me to come into her mother's room andup to the bed to show me her mother's feet:

Maud lifts the quilt to showmehermother's feet. “See, they[the staff] have put her feet into these soft downy slippers toavoid bedsores, but when the feet are placed like this [shestrokes hermothers ankle] they easily bend in awrongway.I want them to place the feet on pillows so they lay straight,with support from beneath [she demonstrates with herhands], but [she sighs] they won't do as I wish”.

Most of the family members described in a similar wayhow during their visits they looked or felt for such traces oflack of proper care on the old person's body. Checking the oldperson's painful leg or infected toenail are such examples.Several interviewees toldme how they lightly pinched the oldpersons skin to see if she or he had received enough liquids, orhow they tried to check whether he or she had lost weight.Others questioned the old person, repeatedly, to see whethertheir speech or memory functions had worsened. The oldperson's body became a map where specific features lentthemselves to interpretation.

The family cannot always rely on the information givenby their old relative or by the staff. This uncertainty againdiscloses the families' ‘impossible’ role, affecting the mannerin which families approach the old person and the nursinghome setting. Consequently, the families searched for bodilytraces and physical signs of care given or neglected. Based onthese ‘remains’, families interpret and assess the (true)health condition of the old person as well as the actual caregiven by the staff. This constitutes a kind of “archaeology ofkinship care”. Traces of insulting or disrespectful treatmentfurther reveal the families' impossible task and limitedscope. They cannot always be there; they cannot constantlyguard the old person's identity and integrity or make surethat she or he is well cared for and respected. Problematictraces are constant reminders about the time the family isaway from the nursing home, a period in which anythingmight happen beyond the families' control. This ‘archeologyof kinship care’ represents a form of control of the staff. A sonregularly visiting his old mother described it as inconcei-vable to relax or miss a visit since he could not be sure thatshe was otherwise rightly treated or properly cared for. Hedepicted his mother's condition as “really bad” and everytime he came to visit her, he felt compelled to “assess” thesituation:

That's how it is … when I come to see her I check up onthe crooks of her arms and poke her around a bit [laughs].I wipe the corners of her eyes since she gets lots of pusand looks smeary, and so I check up on her beingcomfortable in bed and make sure that her legs look OK…

The question is often of trust or mistrust, revealing thefamily's protective role in relation to the staff. The less trust,the more attempts to control. Overall, however, the ‘arche-

ology of kinship care’ represents a way of interpreting andunderstanding the aging and dying process. The familieswere often left alone with their subjective interpretations,despite their pronounced wish to share these with staff andto receive their confirmation. The following quote from awoman, regularly visiting her old friend, gives an illustrationof this:

Once, when I saw that shewas feeling really bad I talked toone of the guys [in the staff] and said, “How is she, really?”“Oh, it's alright”, he replied and I said to myself, “Hallo,young friend, isn't it about time youwoke up?”…Youhopefor some kind of response to your own observations and tohave them confirmed. If you don't get that, you have toleave as a sort of disregarded witness …

The ‘archeology of kinship care’ illuminates the manner inwhich family involvement is shaped and constrained by theinstitutional context with its temporal and spatial order, aswell as by the bodily changes and the deteriorating health ofthe old person. As such, it gives rise to the specific mani-festations of family involvement.

Concluding discussion

Attention is increasingly being paid to family involvementin nursing homes and to the subjective experience of thoseinvolved. However, the research referred to in the introduc-tion has largely focused on the relationship between familyand staff; how to promote family involvement or some formof partnership with the staff. “Partnership” and “workingtogether” has truly become the new rhetoric of caringrelationships not only in policy but also in research (Nolan,Lundh, Grant, & Keady, 2003). It is possible to identify atheoretical subtext saying that the family and family careprimarily is seen as an extra resource in relation to the formalinstitution-based care. Moreover, it is interesting to note howthe research field on family care fails to acknowledge the end-of-life care that often characterizes the nursing homes andother homes for old people. The nursing home ethnographyhas similarly seldom included a family perspective. In thestudy presented here, an important starting pointwas the linkbetween family ties, aging and dying. The focus has been, inother words, on the experiences of families and relativesduring the end-of-life experience of an old person in a nursinghome, and on the relationship between the family and thatperson.

First, the findings disclose the importance of contextua-lizing family involvement and family care. The nursing homeas residence encompasses an inherent cultural ambiguity ofbeing both home and an institution, a place of both living anddying. Amajor feature embedded in the overall experience ofthe setting was found to be the (omni)presence of dying anddeath. The uncertain and vague dividing line between livingand dying, which partly reflects the dying trajectory of theoldest old, creates a sense of uncertain waiting. As thefindings show, this contributes to the families' perception ofthe old person's life as of inferior quality. Additionally, itilluminates the existential conditions under which the oldresidents and their families live. The most important andfrequent existential question found in this study is Why in

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this way? This question partly suggests powerlessness beforethe irreversible aging and dying process, and partly is anexhortation about theway inwhichwe take care of the oldestold during their final phase of life. The overall pictureconveyed is that the family (and the old person) is left aloneto deal with difficult existential questions. This in turn, putsthe family in an ambiguous and difficult position. They areconfronted with something apparently irreconcilable, that ofpreparing oneself (and the old person) for imminent deathwhile simultaneously maintaining trust and hope (a con-fidence in the future in spite of its limited scope). Theseexistential issues deserve far more attention in futureresearch on family involvement in the last-stage nursinghome.

The nursing home is a secluded setting and family involve-ment consequently takes place in a closed environment. As thefindings show, family involvement and care is partly limitedand shaped by the spatial and temporal structure of thenursing home ward where a major part of the care is carriedout by staff, and partly by the fact that the old person's healthis poor and slowlyworsening. The involvement then obviouslytakes on amore subtle and less visible character. The thematicexamples presented in the article reveal the wide range ofvarious roles and tasks undertaken by families. From sparsevisitors to life companions partly captures this. The various‘caring tasks’ detailed by the relatives further reveal that the“small” and seemingly trivial caring tasks mean a lot to thefamilies. The symbolic content and meaning of the involve-ment clearly emerged in the interviews. This led to theconclusion that family involvement in this context should beunderstood as 1) a representation of the relationship, 2) aritualization contributing to continuity and coherence, and 3)a way of maintaining and guarding the old person's dignityand identity. Possibly the role of ‘guardian of dignity’ coversthese three dimensions of family involvement. This role isprimarily about protecting the old person from the con-sequences of the debilitating aging and dying process, and thethreat it constitutes to the old person's physical andbiographical identity. This said, it seems appropriate toacknowledge that this role should not be idealized, althoughsuch a conclusion can be easily drawn. A prerequisitefundamental to this kind of involvement is some kind ofrelational reciprocity. Without reciprocity, the family mightfind it hard to preserve the relationship, to guard the identityand dignity of the old person, and to contribute to the caringprocess.

The ‘archaeological’work here described and exemplifiedrepresents a dimension that further discloses the manifesta-tions of family involvement in the institutional end-of-lifecontext, contributing thereby to a new understanding. Theconcept ‘archaeology of kinship care’ emerged from theanalysis of the manner in which the family approached thenursing home setting and the old person. As a sensitizingconcept, it illuminates the unobtrusive way in which familymembers — during their visits — search for physical/bodilytraces and signs, make observations of care given orneglected by staff, and interpret and try to understand thestate of health of the old one. The old person's body andbodily changes are central in this respect. The body becomesthe primary tool for interpretation. Moreover, the conceptcaptures the temporal and spatial restrictions of family

involvement in this specific context. Consequently, thelimited scope of family guardianship contributes to the‘archaeological’ character of family involvement. Every visitis a reminder of the family's absence and of the period of timethat has passed since the last visit, and every new visitrequires a “time, space and body analysis”, based on availabletraces and signs.

Having summarized the central findings, I will con-clude this discussion by emphasizing some final issuesuncovered in the article that deserve further attention infuture research.

The strong emphasis on partnership between staff andfamily suggests the risk of overlooking the meaning of familyties and the relational reciprocity. Family involvement needsto be recognized as something more than a resource, some-thingmore than different caring roles in relation to the staff. Inthis context, in this life phase, family involvement is primarilyaboutmaintaining relations and accompanying each other untilthe very end. This finding calls for further attention to be paidto the relationship between the old resident and the family.Reciprocal dependency is such an example. To fully under-stand the (changing) relations and roles between the oldresident and the relatives that take place after the nursinghomeplacement, we should take into account the old person'spersonal biography and family history. A life course perspec-tive might be a suitable methodological as well as theoreticalapproach.

The results and analysis presented in the article also callfor a need to take into consideration perspectives andconcepts that emphasize the temporal, spatial and bodilyaspects of death and dying in this context. The findings andcentral themes discussed in the article show that time, spaceand body constitute some of the existential conditions thataffect the lives of the old persons as well as their relatives.Focusing our analysis on these aspects can bring new insightsinto family involvement in nursing homes and other institu-tional settings as well as into issues on death and dyingamong the oldest old.

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 'Forms ofCare in Later Life: Agency, Place, Time and Life Course' awardedby Swedish Council forWorking Life and Social Research to Prof.Eva Jeppsson Grassman. The author wishes to thank ProfessorEva Jeppsson Grassman, and Doctoral Student Anna Olaisson atthe National Institute for the Study of Ageing and Later life, Dr.Anna Milberg at the Department of Social and Welfare Studies,Linköping University, and Associate Professor Göran Johanssonat Ersta Sköndal University College, for their valuable advice onearlier drafts of this article. The author is also grateful to theanonymous reviewers for their insightful andhelpful comments.

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Anna Whitaker holds a position as researcher with postdoctoral grant atErsta Sköndal University College. She is also a member of the research groupat the National Institute for the Study of Ageing and Later Life (NISAL),Linköping University. Her research includes end-of-life, aging and dyingissues with focus on institution-based eldercare, along with questionsconcerning the role of family/informal care. The interest in informalcaregiving is being pursued at present through a study of family caregiversto people with disabilities that she is conducting at NISAL, LinköpingUniversity within the framework of a major project on Disability, Life-courseand Aging conducted by Prof. Eva Jeppsson Grassman.