Journal of Aging Studies 20 (2006) 123–132www.elsevier.com/locate/jaging

Two lives in transition: Agency and context for assistedliving residents

Leslie A. Morgan ⁎, J. Kevin Eckert, Tommy Piggee, Ann Christine Frankowski

Center for Aging Studies, Department of Sociology and Anthropology, University of Maryland, Baltimore County, Baltimore, MD 21250, USA

Received 11 March 2005; received in revised form 24 June 2005; accepted 30 July 2005

Abstract

This research uses data on two “focal case” individuals residing in one residential care/assisted living (RC/AL) facility, collectedas part of a larger ethnographic study exploring later-life transitions, including those leading to the moves into housing and caresettings. In-depth examination of the 10-year transition histories of these two women highlights the major erosion of autonomy withadvancing frailty, illness, and relocation into supportive housing. A second major theme is that an understanding of thecontemporary events and challenges for these two individuals is substantially enhanced by nesting them within the temporal contextof earlier life events, including personal relationships, social events, and preferences. Individual history, elicited from resident,family, staff and professional views, serves to contextualize current choices and reactions to key events. As researchers, adding thistemporal context moves our understanding of their identities well beyond a simplistic snapshot view as “resident” in AL.© 2005 Elsevier Inc. All rights reserved.

Keywords: Autonomy; Assisted living; Transitions; Aging in place

Older adults who live in residential care/assisted living settings (RC/AL) have had rich and diverse lives. Yet whenthey enter these settings, their identities are often delimited to their current status as resident, patient or consumer or tocare needs (“she wanders” or “he is incontinent”) by those providing care or by those doing research (Golant, 1999).Residents are frequently examined in cross-sectional studies, tapping health, social activity or satisfaction at a singlepoint in time while ignoring the broader aspects of personal history, self and identity which they bring to the housing/care setting. As their identities and histories are lost or ignored, also called into question is their adult capacity to makechoices and enact the personal agency typical of adult status in society.

Golant (2003) warns about such a “present-oriented” perspective, advocating instead the temporal aspect as key tostudying older adults within environments. In understanding an episode of living within a particular environment, such asRC/AL,we gain incredible insight through knowing the individual's prior circumstances, expectations, and limitations thatframe current challenges and choices. Rather than a snapshot, Golant (2003) advocates viewing person-in-environmentstudies as frames of a longer movie that includes the environments, people, and traits that have brought the person to theplace where she/he currently resides. In doing so, we can recognize elements, such as personal agency, as traits that havevaried prior to entering that environment, as well as being enhanced by or constrained within that setting.

⁎ Corresponding author. Tel.: +1 410 455 2074; fax: +1 410 455 1154.E-mail addresses: lmorgan@umbc.edu (L.A. Morgan), eckert@umbc.edu (J.K. Eckert), tpiggee1@umbc.edu (T. Piggee), frankows@umbc.edu

(A.C. Frankowski).

0890-4065/$ - see front matter © 2005 Elsevier Inc. All rights reserved.doi:10.1016/j.jaging.2005.07.004

124 L.A. Morgan et al. / Journal of Aging Studies 20 (2006) 123–132

The developing Residential Care/Assisted Living (RC/AL) sector espouses a philosophy emphasizing personalagency/autonomy for its residents, in contrast to nursing homes, which are often described in terms of Goffman's “totalinstitution” as rule-bound and unresponsive to the older adults living there (Carder & Hernandez, 2004; Goffman,1961). By including autonomy or agency as a goal, RC/AL facilities promise a more fully “adult” life to potentialoccupants and families, continuing aspects of broader personhood (i.e., pursuit of individual interests, friendships,hobbies) through assistance in daily routines and care for uncooperative and increasingly frail bodies or minds. Thisphilosophy extends the concept of “empowerment,” a value espoused among social/health professionals serving olderadults, and reflects an effort to reinstate the presumably-absent personal agency that had been the hallmark of manyolder adults' earlier lives (Morell, 2002; Tulloch, 1995).

In this philosophy, voices of older adults in RC/AL settings have been expected to hold greater sway than voices ofprofessionals, kin, and proxies over the major and minor elements of choice, such as control over personal space, dailyroutines, or negotiated risk agreements (Carder & Hernandez, 2004; Golant, 1999). However, little is known about theexperience of personal agency within RC/AL settings, including those which ostensibly endorse choice and autonomyin the face of reduced physical or cognitive functioning of older adults living there.

The purpose of this analysis is to examine elements of agency in transitional events in the lives of two female “focalcase” participants who were residing in a single, small residential care setting. Drawn from an ongoing qualitative studyin six, diverse RC/AL facilities in Maryland, we also inform and contextualize those transitions within the largerframework of the personal histories of these focal cases, including prior life events and prior/current relationships withfamily and care providers. A key element of the study design involves in-depth data collection on such focal cases,where interviews with the focal individual (if possible) and others, including staff, family and other relatedprofessionals, provide both a rich personal history and a richer understanding of the period of resident status within thecontext of the person's life.

Within the broader discussion of agency we also highlight: 1) how the residents' prior histories provide a foundationfor understanding current transitions; 2) how persons and events other than the RC/AL setting provide constraints toagency, and 3) how the voices of various participants in the lives of our focal cases variously define the events andchoices made for or by the people we often see only as “residents.”

1. Agency

Autonomy or agency is a central value in our culture, related to our emphasis on individualism and adulthood; theimportance of agency is culturally based and may not hold equivalent priority in all racial/ethnic groups (Ball et al.,2004; Becker, 1994; Collopy, 1995; Hofland, 1995; Morell, 2002; Schieman & Campbell, 2001; Wray, 2003). Oftendescribed as being comprised of two capacities, a capacity to make a choice or decision and the capacity to enact thedecision (directly or indirectly), agency is often challenged for those who, while still able to make and communicatetheir wishes, no longer can behaviorally enact decisions due to physical or cognitive limitations (Hofland, 1995; Beck& Vogelpohl, 1995). Individuals who are cognitively impaired gradually forgo both elements of agency, although evensimple choices that might be managed are often ignored by busy staff or family caregivers (Beck & Vogelpohl, 1995).

Agency is not enacted evenly across groups of older adults. Often third parties, including professionals, spouses,or adult children, are included in decision-making processes, despite intact cognition on the part of the older adult(Schumacher, Eckert, Zimmerman, Carder, & Wright, 2005). Research also shows, however, that older adults,including those with severe health conditions, are not uniformly passive in decisions regarding their housing or care(Ball et al., 2004; Matthews, 2002). Matthews (2002) notes that older adults faced with functional limitations, oftenactively and successfully resisted their children's well-intentioned efforts to provide assistance. Martin (2002) foundthat some older adults in long-term care facilities undertook acts of resistance to a staff definition of the self asincapable and dependent, despite limited avenues for such resistance. Resistance served to maintain the sense of selfas a full adult, maintain the balance of exchange with adult children, and stave off threats to the self (Matthews,2002). Ironically, some older adults make the choice to forgo decision-making, instead vesting responsibility inothers, such as adult children (Hofland, 1995); such abdication may be part of cultural mandates or class variationsamong families.

In the literature on agency and related concepts, age is sometimes negatively associated with agency, but thisassociation and its underpinnings (i.e., aging or cohort effects) is unclear (see Lachman & Weaver, 1998; Mirowsky,1995; Schieman & Campbell, 2001). Age may be a proxy for health limitations/disability. With disability or major life

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transitions (e.g., widowhood), control over everyday life often shifts away from the older individuals and toward familymembers, health care professionals, and paid care providers (Becker, 1994; Collopy, 1995; Tulloch, 1995). Standing indifferent relations of knowledge, power, and interpersonal bonds to the older adult, these other participants may direct,agree/disagree, silence, empower, or supercede preferences and choices of the older adult. In fact, given the physicalfrailty or cognitive impairment of those entering long-term care, it can be argued that family members, in someinstances more than the potential “resident,” are key consumers and decision-makers (Ball et al., 2004; Frank, 2002).

In some cases the voice of the older adult is absent from this discussion, either through active exclusion, voluntarywithdrawal, or incapacity from illnesses such as Alzheimer's disease. This raises concerns regarding whether anychoice or decision made by these others can be “authentic” to the person's wishes (Collopy, 1995). Thus, decision-making becomes an interpretive and meaning-laden process, contended among various points of view with unequalamounts of power.

1.2. Agency in long-term care

Discussions of the health care industry, long-term care, and health professionals point to the extent to which theauthority of organizations and professionals supercede the choices of older individuals about where to live, what to dowith one's free time, what to wear, when and what to eat, and whether one can come and go freely (Beck & Voeglpohl,1995; Collopy, 1995; Kane, 1995). Once in a nursing home, for example, the care received is responsive to the medicalmodel, which emphasizes effective medical staffing, treatment delivery, and health status as primary to what one can/cannot do, relegating personal preferences and choices to a clearly secondary role (Golant, 1999).

Transitions into RC/AL facilities differ from nursing home admission in that a prior visit (at least by familymembers) and some choice among alternatives is enabled by its private-pay, “consumer” model, at least among thoseable to afford the services (Kane, 1995). Despite RC/AL's philosophical goals, there is a great deal of debate regardingthe degree to which facilities are able to promote agency within the “social model” of care (Carder, 2002; Golant,1999). Like nursing homes, concerns regarding older adults taking risks in their “own” environments (e.g., walkingwithout a recommended walker) or undertaking behaviors that contradict best practices for care (e.g., the diabeticeating cookies in her room) raise liability and external oversight concerns. Regardless of this unresolved tension,consumers, including adult children, find RC/AL settings attractive based on the possibility of aging in place andmaximizing agency, concordant with prior experiences and their diverse past histories (Golant, 1999; Polivka, 2004).

2. Methods

Data for this paper are drawn from a larger study, Transitions from assisted living: Sociocultural aspects, a four-yearqualitative, ethnographic study of six RC/AL facilities in Maryland. This paper is based on extensive qualitative datacollected on two focal cases, two white women in their late 80s, living in one small facility. Focal cases in all facilitiesare selected to represent the range of experience in RC/AL: data include field notes on observations in the facilities andtranscripts of interviews with staff, family members, other professionals, and, when possible, the residents themselves.For one of the cases here, we also had access to ongoing notes from two (sequential) social workers providing directservices over several years and from an interview with the overseeing case manager of 6 years, who had been hired bythe daughter. This analysis represents a focus on all materials collected regarding these two focal cases, and while notrepresentative of all RC/AL residents, provides a depth and richness not available in most RC/AL studies to date (for anexception, see Ball et al., 2004). Materials on these cases are drawn from a growing database, which now includesethnographic work in 6 facilities, including hundreds of in-depth interviews with residents, family, and facility staff,physical assessments on focal cases, and hundreds of detailed field note documents.

A collaborative coding methodology, based in the tradition of grounded theory, is used with the transcribed fieldnotes and interviews, in which each transcribed interview is independently coded by two research team members (teamcoding). The coding scheme includes 59 categories that emerged both inductively and deductively from investigativeteam discussions of documents produced by the ethnographers. After independently coding documents, two memberteams meet to discuss and reconcile any coding discrepancies and differing interpretations of text, and to recordcomments (memoing). Coding teams are rotated to maximize dependability of coding and analysis. At bi-monthlymeetings questions about the coding scheme are discussed (collaborative coding) as well as the evolving understandingof resident change, decisions making, and transitions. These meetings are tape recorded and the minutes added to the

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analytic database. In this analysis, data collected and coded primarily during 2002 relating to the two focal cases, isutilized (interviews with four persons each, plus varied field notes, case records and observations).

3. Findings

Both of these women resided at a home we call Valley Glen, nestled in a leafy suburb of primarily single-familyhomes. At the time of our fieldwork, the owner's sister, a South Asian immigrant, operated the home with six residents,including the operator's mother. Typically, there was one other staff member present at all times, with regular trafficfrom visiting family members and other service providers. Most residents had private rooms. Care was highlyindividualized, with the operator making significant effort to welcome new residents with customized meals in thelarge, eat-in kitchen and attending to “settling into” the new environment. Because of its small size and non-institutional orientation and environment, it represents one end of an array of RC/AL settings that extend to the verylarge and institutional. However, the stories of these two women are largely not contingent upon the facility in whichthey lived when we encountered them. Instead, the facility seems to represent just a step in a much larger and morecomplex history of continuities and changes, including exercise of personal agency, over time.

3.1. Early lives

The early lives of the two women we call Nellie and Rosalie show some remarkable parallels and strikingdifferences. While reared in different countries (Nellie in Germany and Rosalie in the U.S. Southwest), both womenexperienced significant challenges throughout their lives. Nellie faced childhood abuse and a subsequent lifelong battlewith mental illness. She married an American soldier and immigrated after World War II, but the marriage wastroubled, and ended early. Nellie raised a son and daughter, working at various low-wage jobs to support them. Nellielater lived with her daughter (Annie), son-in-law, and grandchildren for a time, but her mental illness stressed thehousehold. She was asked to leave, and moved to Florida at age 71, where she lived independently in an apartment withinformal support from friends. In the mid-1990s, it became clear that reduced functioning (undiagnosed dementiaadded to existing mental illness) and loss of her supportive friendships required intervention. Annie, now a busy,divorced professional, engaged a case manager to assist with moving her back to Maryland and into an independentseniors' complex. At this point Nellie began her transition from independent adult to “resident,” and subsequently to“dementia patient.”

Rosalie began her life in the southwest, as part of a large family living on a farm and picking cotton. She had limitededucation, married young and had a daughter. The marriage was ended after two years while she was still a teenager, soshe worked at various manual jobs and supported her daughter, Beverly, who moved as a young woman to Washington,D.C. for work after WWII. Since life continued to be harsh for Rosalie in her home state, Beverly insisted that hermother move east, which resulted in Rosalie's relocation in the early 1950s. In Washington, Rosalie worked variouslow-skill jobs, but relied heavily on her daughter, never having learned to drive and living in a mother-in-law flatattached to Beverly's home, where she cared for the garden and for her grandchildren. Rosalie also went to Florida for aspan of time in the early 1960s in a job as a nanny; when the job ended, she returned to the mother-in-law apartment andher continued reliance on Beverly.

In the late 1990s, Beverly noticed increased frailty, a series of falls, and pans left to burn on the stove. She soughtsupport for her mother, eventually locating an Adult Day Care program. Again Beverly actively worked to convinceher mother to undertake a change, day care two days a week. As the sequence of falls and episodes continued during thefirst years of day care, Beverly learned of Valley Glen, our study facility, which is quite close to her home. AlthoughRosalie helped to complete applications for housing and for the Medicaid home and community-based waiver program,she opposed as unnecessary the move to Valley Glen in 2001. When her daughter again insisted, Rosalie's move toValley Glen was completed, resulting in a significant mother/daughter rift.

3.2. Current profiles and housing transitions

The two women are typical RC/AL residents in being female, unmarried, over 85, white, and having multiplehealth conditions (Morgan, Gruber-Baldini, & Magaziner, 2001). Rosalie's limitations are primarily physical, whileNellie's dementia progresses in a moderately healthy body. Nellie spends much of her time in a common living room

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at Valley Glen, sitting at a slight tilt on a couch, holding a stuffed cat, and smiling at visitors. Earlier in her stay atValley Glen, she walked in the garden with her daughter and commented on the beauty of the flowers in her originallanguage, repeating the word for “beautiful” in German. She had no remaining language at the time of our research atValley Glen.

In contrast, Rosalie prefers to remain in her easy chair in her room, elevating her feet to ease pain of arthritis. Sheshares the company of others at meals, and relies heavily on one favorite care provider, who she describes as a friend.Both women have histories of being economically disadvantaged, with their current care at Valley Glen subsidized bythe Medicaid home and community-based waiver program. Both have significant family contact in person and, forRosalie, by phone to kin “back home”; Nellie is also visited regularly by a social worker, who provides continuity in hercare when her daughter travels for her job.

In looking at their lives over the past 10 years, both women have experienced numerous transitional events, rangingfrom falls, hospitalizations, and diminished cognitive functioning to Nellie's four housing transitions, which contrastswith Rosalie's one. We turn now to their transitions trajectories and their enactment of/loss of personal agency throughthese events.

3.3. Nellie's housing trajectory and diminishing personal agency

At the time we met Nellie in Valley Glen in 2002, she had experienced four housing transitions, with diminishedagency over time as her dementia progressed. The first move was upon her return from Florida, when the case managerprovided Nellie and her daughter Annie some options to consider.

“….she [Nellie] was approaching this as if I was going to help her find like a small condo. I mean, she wasn'tnecessarily interested in a senior house……We gave [Annie] a list of places to look at that had both independentliving and assisted living, all in …the budget range” (Case manager)

Notes from her social worker indicated that they went to a nearby independent living facility for low-income seniorsnot on the list, and Nellie expressed a clear opinion.

“Nellie loved that” (Social worker)

Arrangements were made for admission to this first environment, although there were already concerns that shewould face challenges there without added support.

“…we didn't think that she would make it at [the independent living facility]. You know, it was like a chance;let's try it….” (Case manager)

After a period of 11 months, it became clear that Nellie needed more help. In the search for another facility, Anniereported that her mother remained able to express her preferences about facilities housing more frail and dementedpopulations.

“…my mother, when she went into those places, she immediately saw those other residents and wanted out. Shewould look at them and think “God, no. I'm not like that. Am I going to be like that?” (Annie)

Of the one they selected (second environment), Annie said,

“It kind of looks like one of the Disney hotels, you know…like the one on the beach in Orlando….It's verypleasant. I think it is a decent facility for people who don't need much.” (Annie)

Nellie's agency and involvement in her relocation decision erodes from this point, as both external events and viewsof others began to shape the decisions about where she lives. According to the case manager, before the move to thesecond facility they attempted to inform her of her coming change and the reasons for it.

“I'm not sure what we told her…. We probably told her that she was going to move closer to [Annie], you know.I mean we might have said we are going to move you somewhere where there is more help available, but hermemory was so bad that it might not have even mattered, you know. I mean the fact that she was involved andthat she was taken to see different places, and we certainly valued what she seemed to like and that she also feltlike she was important.” (Case manager)

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In the second facility Nellie's behavior prompted a reassessment after only a few months, resulting in a move to thedementia care unit, a change that her daughter was reluctant to undertake for reasons related to both care and to cost.

“Dr. D talked with [Annie] and it was decided to move Nellie to the special care unit” (Social worker)

“…when she got there, they [facility] realized it [referring to her impairment] was much more, so we had tomove her to an Alzheimer's wing. So she went from independent living to assisted living to the Alzheimer'swing. It was horrible.” (Annie)

“…they moved her with her passive and not very happy. Facilities like to have round pegs in round holes. Nelliewas just not a round peg, and there wasn't anything that was going to make her that way.” (Social worker)

Nellie “acted out” in the dementia unit (environment three), demonstrating lower functioning than prior to the move,a common pattern for her in an unfamiliar environment.

“Every time she moved out of an environment there was this huge drop in her capabilities. Clearly she had, insome way, been memorizing some things and had compensated.” (Annie)

However, Nellie still was able to express some opinions and preferences to her social worker, who knew her well.The social worker's notes expressed concern about lack of stimulation in the dementia unit and concern that Nellie wasthe highest-functioning person there.

“Nellie reported to me that she was bored and tired of sitting around and doing nothing.” (Social worker)

An external event altered the situation again, when the facility was sold in 1998, just a few months into Nellie'stenure there. The new owners provided lower quality care, with serious problems reported both by Nellie's daughterand the professional case manager.

“[Original owners] went out of the business immediately after my mother got there. And [it] was a goodorganization….you know, real professional. And they sold out to some sleaze bag organization. It washorrible! I mean, unbelievably bad. The help was terrible…….And we decided we just had to get her out ofthere.” (Annie)

“When I last visited Nellie, she showed me her room where a tree had fallen and broken the window and it wascovered up with plastic. I can't tell you how long it took…to fix a window.” (Case manager)

By this time, four years into Nellie's trajectory as a resident of specialized housing, money became an issue inselecting her fourth environment, Valley Glen.

“So she was there over a year… And then I said to [the case manager] ‘I can't afford this. My mother is runningout of money. I need to put her on Medicaid.’” (Annie)

The social worker recommended a nursing home, which the daughter rejected as institutional and uninviting.

“My mother would die if I sent her here, and I couldn't do it.” (Annie)

The daughter learned about the Medicaid waiver program and, through an Ombudsman program, received a list thatincluded Valley Glen.

“I went to [Valley Glen] and immediately – I was there about five minutes, and I said ‘This is it.’” (Annie)

A move was arranged to what Annie hopes will be the final “home” for her mother. During our fieldwork there,Nellie continued to live comfortably at Valley Glen, with a daughter who was – at last – satisfied with theappropriateness of her mother's care and fit with the facility.

3.4. Rosalie's trajectory to Valley Glen

Rosalie's experience of personal agency in her move to Valley Glen home and her subsequent decision to end daycare after 6 years must be understood within the context of the long history of her conflicted and dependent relationship

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with her daughter, Beverly. As described earlier, Rosalie had acquiesced to Beverly's request that she move to livewith/near her in Washington, D.C. in the 1950s.

“I've never liked it since I've been out here [the Washington area]…….. Every letter I'd get from her [whenBeverly had moved East] and every time she called me she would say, ‘Now you be ready when I come backhome so you can come with me,' and I always said ‘No, I wasn't going.’ And then she came and told me aboutthe city and everything, so I thought I would come here.” (Rosalie)

The most significant mother/daughter battle involved Rosalie's move to Valley Glen in 2001. Although theestrangement had diminished by the time of our interviews with them (singly and together), serious tensions from thistransition remained. The transition was the culmination of several events, including getting Rosalie into day care,getting some in-home help, filing for financial assistance to cover these services, and, eventually, qualifying for theMedicaid Waiver for the move to Valley Glen. When Rosalie was asked about how she came to find Valley Glen, herterse reply was,

Rosalie: “Beverly, you will have to talk to her about that.”

Interviewer: “Beverly did that?”

Rosalie: “Yeah”

Interviewer: “Did you get to visit this place before you came here?”

Rosalie: “No, I didn't know it was here.”

Interviewer: “And so she made arrangements and then just brought you here? You didn't get a chance to talk itover?”

Rosalie: “No, we came on a Sunday and in about two or three weeks I moved here.”

Following the move, Beverly found a program that provided counseling to try to mend the rift with her mother. Fromfield notes and subsequent interview comments,

“Beverly says that Rosalie resented the move to a place like this, where she would get 24 hour care. And thetherapist was sent in to help them try to understand the ‘other side’ of the issues and to be a little more……youknow, a relationship to be more on an even keel.” (Beverly's comments, as recorded in field notes)

In recounting her transition and all of the interviews and assessments that had to be completed, the function of thetherapist was lumped in with all of the other people asking questions.

“Well, I gave them my life history….well, I just got so I wouldn't talk with them. I told her I wasn't going to talkwith her and I wasn't going to tell her anything. I wouldn't talk to her.” (Rosalie)

And a subsequent exchange

Beverly: “She's a therapist.”

Rosalie: “Is that what she is?”

Beverly: “You just don't like her.”

Rosalie: “No, I don't”

Beverly: “Well, it's good for me.”

Rosalie: “Well, it's not good for me.”

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Again, it appeared that Rosalie's view of the events was that her daughter's wishes trumped hers, with the move toValley Glen being the result. Rosalie had “settled in” to the facility, but continued to resent the loss of her independentlife in her little apartment.

A second transition event, cessation of twice-a-week adult day care after 6 years, restricted Rosalie's social world toValley Glen home, a staff member she described as her “best friend,” and outings with Beverly to the hairdresser or outfor a meal, weather and health permitting. In 1994, Beverly became fearful of Rosalie's increasing problems withmobility and balance and, fearing for her mother's safety, insisted that Rosalie begin day care. Rosalie did not want toattend, but the daughter again won the battle.

“I just sort of pushed her into going.” (Beverly)

Rosalie began attending twice a week in 1996 and continued through her move to Valley Glen. Rosalie'sdescriptions of the day care are mixed. Among the positives,

“They had a lot of things to do down there. They had music. A woman came……I really enjoyed the films thatthey showed. And each year they had good tapes.” (Rosalie)

“Boy the nurse down there, I really like her. She is tall and skinny – I really like her.” (Rosalie)

According to field notes in 2002,

“The bus ride seemed to be a great deal of fun. The bus driver knew everyone and was the kind of person whoteased and joked. I think there was a lot of laughing on the bus. Rosalie made one special friend on the bus…”(Field notes)

Yet describing the day care in 2001, Rosalie reported that she never really liked it. As field notes record,

“Rosalie is rather given to moods and takes rather fierce likes and dislikes…..She seemed quite tired by the longday at day care and had promptly announced to me that she didn't like it much, saying it was boring and they sataround with not much interesting to do.”

In response to a question about the seating to accommodate her painful legs, Rosalie told us

“Yes, they have recliners there – five or six. They always set me in the worst one.”

Rosalie's explanation for stopping the day care had to do with her difficulty with transportation to the site.

“I had to go in a van. And it was hard to get in and out. He had a step ladder…whatever it is…I stepped up onthat. I didn't like that…somebody almost had to push me on.” (Rosalie)

Rosalie had been experiencing falls, including one just prior to her decision to discontinue day care, and oneethnographer speculated,

“I am curious if the fall precipitated her ‘decision’ not to continue with day care or if she had already decidedthat.” (Field notes)

After she stopped day care, Rosalie's daughter drove her for a visit to the center one day, where she was greetedwarmly. Rosalie reported that,

“Everybody came over and put their arms around my neck and kissed me up.” (Rosalie)

But she only stayed an hour and

“might go back later on…It was good to see her [referring to her friend].”

However, Rosalie did not return to regular attendance, despite the fact that Beverly still wanted her to go. WasRosalie's decision to stop day care an exercise personal agency, based in a reasonable fear of falling or embarrassmentin transportation? Was this decision her “trump card” in the ongoing battles of will with her daughter, or was thereanother, unvoiced reason for this change? Our data do not permit us to answer definitely, since Rosalie was not veryforthcoming in her explanations.

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4. Discussion

The rich backgrounds of these two focal cases, while not representative of all older adults in RC/AL settings,highlight themes and issues arising throughout our six settings and in the broader literature. Issues include findingplacements with good “fit”while attempting to age in place, how agency is challenged well before individuals reach thedoors of RC/AL settings, the extent to which constraints on agency arise not just from the RC/AL facility but fromother sources, and how the temporal-based and multi-respondent views of transitions enhance our understanding ofthese complex dynamics.

First, these two cases reflect issues of person/environment fit and aging in place in the face of declining function.While aging in place is often touted as a value of RC/AL, Nellie was initially placed in a facility where it was doubtedthat she could long manage on her own – laying the foundation for several future moves. Finding a proper “fit” for heras her illness progressed and her capacities grew more limited, and as facilities changed around her, uncovers avulnerability of aging in place. As degenerative conditions progress, fit erodes and facilities may not be able to adapt,prompting stressful transitions. Facilities struggle with the challenges of aging in place, finding solutions ranging fromrequiring transfers to multiple levels of care or permitting private purchase of supplemental services. For Nellie, thepath to Valley Glen required several shorter stays in larger and variously appropriate environments. Luckily Rosalieseemed to find a good fit in her first setting, but both statistics and our data suggest that moves are common, and lengthsof stay relatively short, often in search of better fit as needs change or resources dissipate (AHSA, 2005).

Valley Glen is a small, family-like, personalized and affectionate environment – less structured or medical in focusthan others we have studied. We doubt that Valley Glen would be the right placement for many residents we have seenelsewhere in this highly diverse sector of housing and care. Older adults and their families are challenged to find anaffordable, supportive environment that can provide for their needs while sustaining a sometimes losing battle tosupport personal agency as health and cognition change through time.

Second, it is important to remember that older adults entering RC/AL facilities have probably already encounteredconstraints on personal agency, either due to the problems prompting placement or from long-term life circumstances.In comparing agency within RC/AL, we should be cautious not to assume that a full array of choices had been theirs inearlier stages of life. Examining our two focal cases in temporal context demonstrates that both Nellie and Rosalie hadnot exercised unlimited agency earlier in their lives. Economic and familial constraints had clearly delimited theirchoices, as had Nellie's fragile mental health. As these two women and their families faced growing challenges in laterlife, alternatives for housing and support remained limited by economics, prompting some of the transitions we seeover time. For some disadvantaged individuals especially, the constraints faced as residents in an RC/AL may actuallybe equal to or lower than those in earlier life experiences (Golant, 2003).

Third, we learn from these cases that agency is expressed, enforced, or abdicated based on prior history, personalcharacteristics, and current family dynamics, as well as traditions of culture or class. Facility factors, such as theconstraints placed on personal choice in nursing homes or RC/AL facilities, are often mentioned as a major challenge toagency. Given the organizational needs of facilities, some rules and limits seem unavoidable. Limitations on choice,privacy, and personhood are remarked upon by some of our interviewees, who refer to their peers as “inmates” or“cellmates,” reminiscent of language associated with the “total institution” (Goffman, 1961). But it is not simply thefacility that structures limits, and not all residents find their agency highly constrained.

Family members are another source of constraint on personal agency. In Rosalie's case, as well as other cases in ourresearch, concerns of family members with regard to safety shape the extent to which risk-taking is permitted oncethere. Facilities, hearing family concerns regarding mobility, self-medication, food choices or similar issues, are likelyto be responsive to the family member as the primary consumer, instead of permitting the “riskier” wishes of theirresident to eat, drink, move, medicate, and otherwise act as they choose (Frank, 2002).

Elsewhere in our study of six highly varied facilities, we have seen instances of enabling of residents' personalagency by family and staff. Rather than generalize from these two focal cases, presentation of more cases would alsoreveal individuals residing in RC/AL who retain control of their choices over minor, everyday issues and over majordecisions, including housing choices. These are, however, typically individuals with enabling resources (i.e., financial,familial, and cognitive resources) that are not uniform among their peers.

Finally, we are informed both by the temporal perspective of our data and by the multiple individuals who served asinformants regarding these and other focal cases. Beyond focal case and family member interviews, we heard from aprofessional case manager, social workers, and Valley Glen's administrator, who often had a role in mediating ties

132 L.A. Morgan et al. / Journal of Aging Studies 20 (2006) 123–132

between those in her care and their families. The multiple informants do not always share similar views regarding whatis or what should be happening when decision points are encountered. The administrators and staff providing directcare provided us with a unique “reality check” on our own observations and the utterances of others. These multiplelayers of understanding reflect the complexity of social life that holds sway in RC/AL settings, just as it does in thelarger community. Use of multiple informants does not permit us to tell THE story, but instead to understand theseevents as they are multiply constructed by their participants. These rich life stories continue to unfold after transitionsinto RC/AL settings; “residents” bring their unique histories, complex emotions, and ongoing family dynamics withthem as they face the challenges of later life. Shrinking the identity and history of an older person in RC/AL settings tothat of “resident” hides the rich and complex story upon which this transition in their life is built (Golant, 1999).

Acknowledgement

This research was supported by NIA Grant R01 AG19345 “Transitions from assisted living: Sociocultural aspects”(J.K. Eckert, Principal Investigator).

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