NURSING HOME RELOCATION AS LIFE COURSE DISRUPTION: HOW THE ELDERLY CREATE AUTONOMY DESPITE INSTITUTIONALIZATION by TYLER M. LUNDY B.A., Linfield College, 2006 A thesis submitted to the Faculty of the Graduate School of the University of Colorado in partial fulfillment of the requirements for the degree of Master of Arts Anthropology Program 2014
i i This Thesis for the Master of Arts degree by Tyler M. Lundy has been approved for the Anthropology Program b y Sarah Horton, Chair Marty Otaez John Brett May 2, 2014
i ii Lundy, Tyler M. (M.A., Anthropology) Nursing Home Relocat ion as Life Course Disruption: How the E lderly Create Autonomy Despite I nstitutionalization Thesis directed by Assistant Professor Sarah Horton. ABSTRACT This research study examines how low income elderly individuals attempt to continue to shape their life course after the disruption caused by chronic ill ness and the relocation to long term care Drawing from semi structured interviews with 11 long term nursing home residents ranging from 66 to 83 years old, this study explores the perceptions of low income elderl y adults regarding the pathways to nursing home admittance; their experiences of the decision making process and of transitioning from independent living to nursing home care; and their search for continuity. The narratives of these long term care resident s illuminate the lived experience of long te rm care relocation as stages of life course disruption, a period of limbo or liminality, and a period of life course reorganization Moreover, the narratives illuminate how the elderly exert agency in creating forms of autonomy within a context of institutionalization, inherently a situation of dependency It is concluded that transitioning to a long term care facility, just like other transitions of the life course, can exacerbate disruptions or facilitate cont inuity The form and content of this abstract are approved. I recommend its publication. Approved: Sarah Horton
iv ACKNOWLEDGMENTS The author would like to thank all the individuals in t he nursing home communities he visited for taking time out of their day to share their story I would also like to thank my advisor, Sarah Horton, for helping me through the research and writing process. Finally, many thanks to my wife for being so patient and supporting me through this process.
v TABLE OF CONTENTS CHAPTER I. INTRODUCTION 1 II. RESEARCH DESIGN AND METHODS 9 III. RESULTS 15 IV. DISCUSSION 2 7 REFERENCES 32
1 CHAPTER I INTRODUCTION Ken is a 66 year old who has been in long term care for just over four years. He first relocated to nursing home care after a sequence of complications from diabetes. His legs were amputated; he had kidney failure; and he lost one of his eyes. Speaking abo ut you know, I am apartment for a month but small tasks were still difficult. To g o up the stairs, he would have to sit backwards and push himself up one at a time. Furthermore, Ken had limited amputate. t want to have a nurse come once a week. He wanted constant care in case something happened. He said he chose the current long term care facility because it was close to the park and had internet access for things like Netflix. He had a difficult time wit h relocation at first because of his adjustment to the use of his wheelchair and frustration with interacting with other wheelchair. This allowed him to go into the nearby park and take pictures so that he could paint them, something he had done since he was a kid. He discovered a better way to paint using his computer while in the nursing home because it was too difficult using pastels like he had throughout his life because of his limited vision. He developed continuity by reforming his previ ous self. He was able to reshape his artist self to suit his changed body. Furthermore, Ken felt good about his transition because his health had resonates with the narrativ es of many of the residents I spoke with: it is filled with life course disruption and seeking life reorganization in long term care. Fieldnotes on February 2, 2014 65 age group, a trend which started in 2011 (Vincent 2010). To provide some perspective, the population over 65 is projected to increase from 13% of the population in 2010 to 19% by 2030. By 2050, an estimated 88.5 million people will be over the age of 65 (Vincent 2010). The aging population is diverse in its socioeconomic, cultural, racial, ethnic, health and
2 cog nitive conditions. Yet it is projected that 70% of U.S. seniors over the age of 65 will require long term support services at some point in their lives that is, institutionalization in nursing home facilities, assisted living or in home managed care (Color ado Health Institute 2013). portend the depletion of economic and social resources due to the increased stress placed on the system by a growing elderly population (Roberts on 1999). Underlying such investigates the lived experience of long term care and its mea ning for those elderly elderly individuals attempt to continue to shape their life course after the disruption caused by chronic illness and the relocation to long term care. In doing so, I examined how the elderly exert agency in creating forms of autonomy within a context of institutionalization, inherently a situation of dependency. Theoretical Perspective The experience of change in the life course for the elderly is shaped by the constructed stories others tell about what an age group is doing; these narratives create synoptic illusions (Cole 2013). Cole (2013) uses the concept of synoptic illusions to des cribe the reduction of a wider diversity of experience and identity of an age group by promoting the select narratives that portray a subset of highly visible characteristics for at the expense o f the more heterogeneous experiences of the whole age group. Synoptic illusions therefore limit the
3 representations elderly individuals draw on to interpret their movement through the life course, leading to an association between the elderly and inherent dependence. In contrast with synoptic illusions, Danely and Lynch (2013: 5) argue for a e the elderly as active agents. As Cole (2013: 230) states: T he synoptic illusions associated with old age create a sense of foreclosure: because we know that old age leads inexorably toward death, we know the outcome, and we interpret it accordingly. The shift in the balance between past and future transforms the horizon of the possible. Like the elderly, so too scholars must exert more effort to create a sense of narrative possibility a sense that there is, if you look closely, something to discover J ust like the elderly themselves, researchers need to take action to lift the synoptic illusions associated with old age and examine how elderly individuals continue to exert their agency. Synoptic illusions affect the definitions of identity and self for elderly adults, y adults perceive suggest that relocation to long term care in old age is a powerful life course disruption. Furthermore, ageism in the United States construes olde r adults as frail individuals in need of protection rather than capable of control and independence (Kaufman 2002; Reinhard 2012). These popular cultural perceptions complicate the disruption experienced by elderly adults transitioning into long term care and make life reorganization more difficult.
4 phase of life, and meaning is assigned t o specific life events and the roles that accompany them. When expectations about the course of life are not met, people experience inner explore the relocation to long (1997) disruption framework, such as: disruption event, a period of limbo or liminality, and finally a period of life reorganization. In this framework, disruptions challenge what individuals expect an d represent as the future and they are only able to restore order by reshaping ideas of self and the world (Becker 1997). A life disruption inevitably places an individual in a period of limbo. Becker liminality an individual is no longer a part of their previous social status, but not yet fully a part of the next phase of life. People feel unable to move forward because they cannot envision the future and are thus trapped in the present (Becker 1997). In addition, the period of limbo experienced by individuals after a disruption -and before they can begin to restore order -can persist over many years or even for the rest of their lives; Becker and Beyene (1999) describe Cambodian refugees still in a state of limbo after being in the United States for over 15 years due to the violent context of their disruption. The final stage that of l ife reorganization -undertake to accommodate daily life in a completely new environment, as well as the
5 the work of trying to recover from illness which may include moving to a nursing home or receiving dialysis can also impede life reorganization (Becker 1997). d in ordinary routines of daily life, the mundane and next in life, of being able to imagine the future (Martin 2013). Furthermore, Kaufman complex than a series of losses and attempts to adapt to them. It is rather an ongoing refitting and reformulating of images, symbols, and behaviors of the past into the develop a sense of continuity derives from cultural expectations of a predictable, knowable, and continuous life cour se (Becker 1997) and exists in a continuous tension with the repeated disruptions in experience in life. This study illuminates how elderly adults attempt to reorganize their lives during and after life disruptions and the meaning that relocating to long t erm care takes in their perspectives of the life course. Aspects of Relocation The transition to a long term care facility is the most significant relocation event affecting older people (Lee et al. 2002). This relocation has been found to typically follo w a crisis event, such as an acute illness or stay in the hospital (Fraher and Coffey subsequent transition to nursing home care must be situated in their individual context (Fraher and Coffey 2011; Reed et al. 2003). In a review of nursing home relocation
6 ercise choice, to maintain control, and to see the placement as being voluntary, desirable, confirmed that the feeling of independence in choice and control over reloca tion supports perceptions of a positive experience for elderly individuals moving to long term care (Fraher and Coffey 2011; Johnson et al. 2010; Sussman and Dupuis 2013). This suggests that when there is less of a disruption to their sense of independence and control, this may limit the period of limbo and facilitate reorganization. However, even despite the importance that participation in the decision process plays in creating a better experience of relocation, research continues to show the considerable role of other individuals in the relocation decision. Physicians, social workers or hospital discharge planners, and family members each may help shape the decision of an elderly individual to enter long term care (Johnson et al. 2010; Reed et al. 2003; R eder et al. 2009). The degree of involvement in the relocation decision has been found to fall on a continuum of four types of relocations: relocation by preference (by choice), strategic (the individual planned beforehand to change his living situation), reluctant (the elderly individual resisted or did not agree with decision), and passive (the decision came from others and there was no objection from the elderly individual) (Reed et al. 2003). In addition, research using adjustment scale surveys argues the importance of a efficacy, self reported health, preconception about nursing homes, emotional support
7 from staff and other residents, family satisfaction and general sa tisfaction with the factors, and added religion or spirituality and experience with previous health problems as influencing a positive experience with relocation (Brandb urg et al. 2012). Once individuals enter long term care -meaning a stay longer than 90 days -there are very few reverse transitions, that is, from a nursing home to the community (Gassoumis et al. 2013). In the U.S., states implemented test programs like Money based services following a discharge from long term care. However, such programs did not take into account that the longer an individual stays in care the harder it is to maintain crucial connections in the community that are essential to remaining independent: people lose the relationships with their neighbors, previously utilized as informal support to remain in the community, along with their housing or apartments (Rein hard 2012). Furthermore, elderly adults in long term care, especially those on Medicaid who only receive 50 dollars a month for personal use, have limited resources to contribute to the costs of moving out, such as: deposit, furniture, food, and accessibil ity alterations (Reinhard 2012). The current literature has investigated many separate avenues of relocation, but its examination of the experience of elderly adults across all phases of the relocation process is limited. A longer look at the post relocat ion period is needed to illuminate the broader picture of the liminal period in the life course of elderly adults as well as how the elderly struggle for life reorganization (Sussman and Dupuis 2013). Furthermore, the majority of the recent qualitative stu making processes to enter a
8 nursing home and their transition experiences have been conducted outside of the United States, in countries with different systems of health care and reimbursement such as Canada, Australia, and the UK. Therefore, by illuminating the role that long term care this study helps fill this gap.
9 CHAPTER II RESEARCH DESIGN AND METHODS This study s eeks to explore the transitional experiences of elderly adults in Colorado. In particular, it explores the perceptions of low income elderly adults regarding the pathways to nursing home admittance; their experiences of the decision making process and of trans itioning from independent living to nursing home care; and their search for continuity. This study used the qualitative research method of in depth semi structured interviews in order to explore categories of meaning around pathways of nursing home admitta nce and the experience of transitioning into long term care. Interviews were conducted with 11 residents of two nursing homes located in the metropolitan Denver area in Colorado. The data were collected by the author during interviews ranging in length fro m 20 minutes to 97 minutes, with an average length of 45 minutes. Research Location The research was conducted in the City and County of Denver, Colorado. The population of the City of Denver was 600,000 in 2010 with just above 10% being over 65 years old (US Census Bureau). Approximately 34% of Coloradans over the age of 75 currently live on their own (Colorado Health Institute 2011). Colorado has 214 licensed skilled nursing facilities, all of which are required to accept Medicaid reimbursement (Col orado Health Institute 2011). Denver has 24 nursing homes, totaling a capacity of 2343 beds (Colorado Department of Public Health 2012). To recruit interviewees, the author contact ed nursing homes suggested by key informants because they may contain a pop ulation fitting the research guidelines and
10 would be willing to allow a researcher to speak with the residents. To be included in the study, residents needed to meet a list of inclusion criteria They had to be over the age of 60; a current resident of the long term care unit of a nursing home, meaning a stay longer than 90 days; resident of a nursing home within Denver County; and able to provide consent and willing to participate. Residents were excluded from participating in the study if they were diagno memory or make the individual unable to provide consent. The recruitment involved the nursing home administrators and additional staff providing names of residents who fit the sampling criteria a nd who were capable of participating. A time was arranged to visit with residents at the nursing homes who had expressed interest. The research study and the consent process were explained to the resident. If the resident was free at that time, they were a sked to complete the interview then and to choose a comfortable place to conduct the interview; if the resident was busy or not feeling well, a different time was set up for the interview. Ethical Considerations The study protocol and consent form were approved by the University of study. Permission was obtained from the nursing home administrators. Administrators required the author to pass a background check prior to allowing him to be alone with the residents a procedure similar for volunteers who want to help in the nursing home community. All participants provided their written informed consent before moving on to the interview process. All proper names utilized for residents in the text are pseudonyms.
11 Participants The study contained three men and eight women. Participants ages ranged from 66 to 83 with an average age of 73. The length of stay in the current nursing home at the time of the interview ranged from three years to 11 years, with an average length of stay of 5.8 years T he average age at admission among particip ants was 67 years old with only one participant below the age of 60 at the time of admission (58 years old). The participants reported a wide range of illnesses as the cause of their admittance to the nursing home, including: strokes; amputations and kidn ey failure caused by diabetes ; pneumonia; diverticulitis; mental illness ; and falling. In addition, five of the 11 participants reported additional problems affecting their health, including: diabetes ; ; broken hip ; heart attack ; cancer ; and sep sis. Every participant but one was enrolled in both Medicaid and Medicare to help pay for their care in the nursing home at the time of the interview. The one exception reported having Medicare and a pension check from the telephone company to pay for her nursing home stay. Data Collection Semi structured in depth interviews were conducted as an exploratory method to experiences of nursing home relocation and transition (Schensul 1999). The semi structured nature of the interviews was used because the interviews were one time and it allowed for comparison across participants while providing the flexibility to explore new themes and e xperiences (Gravlee 2011). During the interviews the participants were asked for narratives of experience ; 99:138).
12 Furthermore, narrative provides insight into both perspectives of those experiences (Becker and Beyene 1999). The participants were asked for narratives surrounding the decision to enter nursing home care and the t ransition into nursing care. The narratives provided insight into the lived experience of individuals deciding about long term care and what they found was the hardest and most helpful aspects of the transition. All interviews took place within the nursing homes in which the participants resided, but in a place of their choosing. All of the interviews but two were simultaneously in a common dining hall in the nursing home. The in terviews were digitally recorded with the consent of the participants and transcribed verbatim for analysis. An initial interview guide for participants was produced after having in depth open ended interviews with two key informants familiar with nursing homes and elderly adults in the Denver area. The key informants were recruited for their local knowledge as w ell as for their depth of experience with nursing homes in the Denver area; each key informant had over ten years of experience working with the elderly and with nursing homes for local and state agencies. These interviews were then transcribed and analyze d for repeated themes to focus the interview guide for nursing home participants (Schensul 1999). The interview guide was revisited and further refined after two preliminary interviews with individuals residing in a nursing home community. With the remaini ng participants, questions were asked in the same order, but were open ended Questions included : How did you come to be in nursing home care currently? Did you feel like you were part of the decision process? How did you feel about the plan to transition into a
13 nursing home community? Can you tell me how the transition into the nursing home went for you? How did you feel about your health prior to nursing home care? How do you feel about it now? Sub themes were explored with additional probes, such as : Wha t was the discharge process like from the hospital to the nursing home? Did you speak with people at the hospital about your situation? How did you feel about the options given to you prior to discharge? Effort was made to keep the interview process conver sational and informal. T he interview format provided the ability to cover the experience and perceptions of individuals across multiple stages of the life course. Data Analysis This study used a constant comparison analysis method developed from grounded theory methods (Glaser and Strauss 1965). The data analysis started with the first key informant interviews and continued through the data collection process. After the interviews were transcribed, they were entered into the qualitative data software Dedo ose (2013); which allowed for consistent use of the codes throughout analysis and continuous comparison of text excerpts with each other. Once the data were entered, the researcher proceeded with open coding, breaking the data up into smaller segments and attaching a descriptor code to that segment (Strauss and Corbin 1998; Leech and Onwuegbuzie 2008). The codes used were both a priori that is, developed from the previous literature -as well as emergent that is, emerging from the experiences of individuals and key informants; constant comparison analysis is a useful analy tical tool for any text, not only in grounded theory (Leech and Onwuegbuzie 2007). A priori codes included the different levels -personal, interpersonal, and structural -influencing the dec ision to enter
14 nursing home care. Then the codes were grouped together during the axial coding stage of analysis (Strauss and Corbin 1998). Finally themes were drawn from the grouped codes in the selective coding process (Strauss and Corbin 1998).
15 CHAPTER III RESULTS The individuals who participated in this study varied in their perceptions surrounding relocation to long term care. Much of their response to relocation was based in the context of their life course and the specific circumstances surro unding their relocation. Every resident I spoke with regardless of whether they felt positively, negatively, or ambivalently about relocation sought to exert agency and thus autonomy in the face of institutionalization. The results discussed below are piec es of the overall data collected. These stories were chosen for their represen ta t iveness of the main themes, but also to illuminate the differences between individuals and their circumstances and how these influenced their experience s of disruption, limbo, and reorganization. Many of the participants experienced multiple disruptions at the initiation of their stay in long term care as well as continuous disruptions wh ile living in long term care due to chronic illness This prolonged period of disruption co mplicated a neat maintained the elderly in a situation of chronic dependency. Disruption : The Decision to Relocate Each story of disruption told by the participants was unique and spe cific to their particular circumstances. However many stories shared a common theme of the onset of severe health problems that developed beyond their means to manage them safely without the possibility of further trauma or even death. Nevertheless, the d ecision to relocate to long term nursing care was seldom made solely by the elderly individual him or herself, Reed et al. ( 2003). Although nursing home
16 residents expressed their need for higher levels of care, they portrayed the decision to relocate as significantly shaped by other individuals -whether a discharge planner at the hospital a social worker or member of their family. During the disruption period, most elderly adults ceded autonomy by accepting som e level of authority by others involved in the care process. B oth key informants also mentioned the frequent involvement of others in the decision to relocate Two indications were made. First, key informants stated that discharge planners or so cial workers in the hospitals are the gatekeepers to nursing home care by directing care plans for individuals in the hospital system towards nursing home services. Discharge planners are constrained by the fact that Medicare limits the number of days for which it will reimburse hospitals and even further by the few waivers that allow for Medicaid to pay for anything other than nursing home care for low income patients. Second, they stated that family members can be overprotective of elderly individuals and insist on higher levels of care, feeling more comfortable with nursing homes In short, key informants suggested that family members tend to direct the elderly to long term care in a manner similar to discharge planners and social workers. However, when participants looked back on the decision to relocate, many asserted that they had exerted their autonomy in deciding to relocate. They claimed they had been at least half the equation in making the decision, oscillating between the phrases ne resident Myrlie, had tried to recover at home after a stroke; however, she found it too difficult to take care of her old house by herself. Her family helped her move to a smaller apartment in the Denver a rea with in home care. Yet she became ill again with kidney failure and
17 diverticulitis and had to return to the hospital. Recalling the decision to move to long term care from the hospital, she stated : decid She summed up the situation: Similarly, another resident, Helen, had been repeatedly institutionalized in mental health facilities when she was younger; she continued to visit mental health workers for the next 20 years. W hen asked how the decision process went with her mental health case manager, she me that had the bo a senior citizens resource book that she was using to help herself choose which facility in which to move. ) Her role in the decision process became even murkier when she discussed her long term psychiatrist relocat ion to the nursing home from her previous wanted me out of there because he said that I was going to die in there; that I stayed in par ticularly concerned about her medication management ; she cited their concern that she might overdose on her medications as a main reason for wanting her to move to a more controlled level of care. In situations of severe illness, some residents make the de cision to relocate in order to not be overly dependent upon family members Richard, who is a 78 year old male and entered long term care after a double amputation to his lower legs from
18 diabetes, spent two months in the hospital trying to heal the diabetic wounds on his legs When asked about the discussion he had with his family about the next step in his care, it was on her daughter when they lived together; describing all the things that made her a burden to her daughter and saying their care by residing in long term care. Paradoxically, they exerted agency in choosing to relocate to a nursin g home rather than be dependent upon their family. In telling the story of the decision process, then, many residents tended to the extent to which a resident s own agency was a part of the relocation decisio n was unclear; every participant mentioned another individual, be that discharge planner or family member, as a part of the decision process. In addition, as in the case of Helen, residents made contrasting statements about their role in the decision proce ss attributing the idea to her mental health manager, and finally settling on the pronoun making process to relocate was co constructed not only by residents but by multiple agents. However, residents continued to frame the decision as autonomous in many cases in an attempt to assert their continued agency in shaping their life course. Yet a number of factors diminish the input of an elderly person in the relocation decision: acute illness, lack of resources, and lack of family According to nursing home
19 residents, t he decision makers within the hospital system step in when individuals still have a high acuity level or diminished capacity, suc h as after a stroke. Genevieve for example, had lived alone in subsidized housing and had suffered multiple strokes. After her last stroke, s he spent about a week in the hospital W hen asked how her discharge r what they did. They were trying to find a want to live in a nursing home at Genevieve expressed feeling like a tertiary part of the decision process. With limited resources at her disposal, she had been homeless for a period of time before living in her subsidized apartment She did not mention any family. Because of her medical acuity and limited resources, Genevieve accepted relocation to a nursing home as the only option open to her. Genevieve ceded her wishes to an alternate authority ; she felt th at if she did not In part, decision makers such as discharge planners and social workers step in ndividuals who have spent a long time in the hospital or still have a high acuity may be unable to make such long term decisions for themselves. Tom spent six weeks in the hospital due to kidney failure, heart trouble, and a cancer diagnoses, after living in a single room occupancy motel. When asked if he felt like he was part of the decisi on to relocate, he considered his ability to make the decision, stating:
20 To the best I could, yeah. Yeah, I mean, yeah as far as I could say, yeah it was, it r e that fucked up with drugs and stuff, in what sense can you really be said to be making an informed decision, you know. Tom questions the autonomy of the decision being made by an individual under such heavy care. Tom perceived the best course of action wa s to leave the decision up to the discharge planer or family members. family can prevent them from having a sense of autonomy in the decision to relocate. Limbo and Liminality T he disruptions of moving to long term care are not only exacerbated by chronic and acute illness, but they are also compounded by the uprooting of many other aspects of individuals lives. Many of the residents lost their housing arrangements w hen transitioning to long term care. As in the case of the decision to relocate to a nursing home, many residents found that limited financial resources precluded their ability to reorganize their lives while in the nursing home. Several of the individual s I spoke with had lived previously in subsidized housing or in their own apartment They were unable to keep such housing arrangements once admitted to nursing home care. A common theme in interviews was the expression of grief and inner conflict over the loss of their apartments Myrlie said: apartment, oh I loved it. It was really nice picnic table and one of the gentlemen there, every Friday, h e would bring KFC,
21 housing was a way of looking back on a time when individuals felt they had more independence This nostalgic retrospective glance created a bridge back to a time of autonomy before their life course disruption (Becker 1997). Furthermore, residents lost their previous social ties along with their housing Richard was renting in a mobile home park with two other elderly gentlemen all three of whom develope d health problems at the same time One gentleman moved facility and the other pass ed away. After he was discharged f rom the hospital, Richard was left with nowhere to return moving bac k to his home Richard stated that the most frightening aspect of the transition was not knowing where he was going to end up. He told a story of a man he used to see in the park who had no legs; the man made his living selling tamales Homeless, the man h ad to sleep in the oven of his food cart when it got cold outside. Richard, who also had both legs amputated, said : asked how he felt about his own housing options when discharged from the hospit al, he said he felt himself in a similar predicament: The fear felt by Richard because of a lack of resources continued during his nursing home stay. He needed reassurance from the nursing home that he would not be kicked out and doubted his ability to move back to the community because of his limited financial resources. The loss of housing and lack of resources created higher levels of anxiety for individuals during the relocation process making it difficult for them to move
22 forward because they were unsure of what the future may hold In addition, the loss of selves in their lives before institutionalization. Although all of the participants had been in long term care for at least three years, man y still felt uncertain about their future. Residents continued to feel conflict between dominant cultural ideologies during their recover y. For example, when Brenda discussed her thoughts about leaving the nursing home three years prior, she said Brenda discussed multiple times throughout the interview that the worst part of being in long sell her brand new car and move out of her apartment. Thus some residents equated their and yet were unable to imagine or plan for an autonomous future. In addition, Helen, who is 75, questioned what her future would look like. She frequently compared her relatively young age with other residents who were over 100 years old. This longer life was something that she had previously never considered possible. As she put it: more years if I Many r esidents had to confront the conflict between their current perceived dependence and the autonomy they hoped to regain in the future They viewed the nursing home as a safe environment, but as a temporary transition rather than a
23 permanent home. As Becker (1997) puts it at the beginning of their stay, some residents are unable to move forward because they cannot envision the future. The period of limb o experienced by residents can be prolonged by continuous disruption to the daily routine while living in long term care. For example, Brenda had to I have been in and I have a chronic infection, ha. I am just a chronic person. made her question what her future should look like, as her need for care undermined her desire t o live independently. She hoped to eventually improve and leave the nursing home, but she knew that she had not yet achieved that. As she stated: I feel like I While continuous disruptions liminality, so too did some of the treatments received. Dialysis treatment was noted by many residents as being particularly traumatic. Residents Richard and Betty both mentioned not being able to particip ate in the activities and physical therapy that they enjoyed because of missing so much time for dialysis, which was three days a week for four hours a day. Dialysis disrupted the continuity individuals had constructed in long term care and forced further life course reorganization. L ife Reorganization While some residents felt trapped in the present, others positioned their life course as progressing even despite their relocation due to the gains in health that they had achieved. Many residents expressed feeling good about their resiliency as well as just feeling lucky to have made it through the worst of their illness and still be alive. When
24 considering what helped her, Betty stated the beginning of everything because they called in the family and they thought I was Betty also felt better about her health since relocating, making the transition to long term care ea sier. Similarly Tom stated: T Most residents mentione d the presence of regular medical treatment and the constant watchful eye of medical professionals as a reason for staying in long term care. Residents used statements like to describe the importance they attributed to rece iving regular medical care. Others expressed fear of insufficient care. For example, Ken had difficulty living in his second story apartment after having one leg amputated due to diabetic complications. When discussing the conversation with the hospital di scharge planner to relocate after his other leg was amputated, he stated: I f they are going to take care of me provided by the nursing home contrasted with their negative experience s with health care before their illness es Residents expressed a dislike for and an avoidance of medical t reatment prior to entering long term care, saying : another resident put it: in the nursing home allowed residents to ameliorate their illness, which in turn made them feel positive a bout their stay. Residents
25 reorganized their notions of self around the need for constant medical care ; they transformed the perceived dependence of nursing home relocation into a narrative of building a healthier self. Two of the individuals who shared a n overall positive experience about their relocation spoke about their lives as being broken up : having one life before the disruption and another after. As Richard stated I n my previous life I drove a cab for a While driving a cab led to his hospitalization: W hen my kidneys failed I went back in the hospital for maybe a month and they kept a bed waiting for me here. As soon as I felt better and well enough to go, I came back home. This is what I call home now. Like I said, I really like the place Richard mentioned multiple times t he relationships he had built with the staff at the nursing home community as a positive feature of his living situation self. In addition, when Tom spoke about his heart operation as creating a r upture from his previous life h e said : L before I went into that operation, which was a e, it was transformed, you know, and my previous life problems that I was having. The things, some of the things He also stated : hat I am probably about as good as I can be. I mean, people at dialysis, my blood work is fine. Everything is really nothing they can do. When the stuff that they give m
26 worry about, you know. I keep kind of focused on the present. I think by just talking to me you get an idea of what my sense of the past and stuff is. The future, sic ) necessarily kind of short term, best handled by retreating into issues of the day. Tom felt like he was leading a different life after the onset of chroni c illness. Tom was even with the uncertainty of chronic illness by focusing on the routine and ordinary issues of the day (Becker 1997) Once individuals reorganized parts of their life and buil t a sense of continuity, some individuals gua rded against further disruptions, such as relocating to another f orm of housing or care facility; all five residents who discussed speaking with their current nursing home about relocation as well as three residents who did not speak with their current nur sing home, expressed disinterest and concern about additional transition. This is a variation of the g erontological concept of aging in place typically applied to living independently to minimize geographical, social, and economic disruptions as well as to maintain a sense of control (Kennedy and Minkler 1999). As pointed out by Tom : Yeah, I can maybe go to an independent facility, but then you see what this. It would be a question of starting over. You know, I would lose my psychologist. I would lose my routin e for getting to dialysis, would change am not worried about the long term either. If you had a year to liv e would Many residents had found s ome level of continuity in long term care and thus may resist the prospect of another disruption by moving to a different form of care even if it were a less dependent form of institutionalization.
27 CHAPTER IV DISCUSSION Interviews with elderly residents provided a window i nto their lived exper ience of the transition to long term care They illuminated the ways the elderly coped with relocation t o a nursing home and sought to reorganize their life course Residents experienced a life course disruption due to chronic and acute illness and subsequent relocation to a nursing home facility a completely disparate living situation than they had previou sly experienced or expected. Becker (1997 :8 enables us to examine the wellsprings of many core tenets of U.S. s ociety and to explore how deeply those core tenets are embedded in the cultural contours of pe By looking at low income elderly the tension between the ageism built into the healthcare system and normalizing ideologies of autonomy and independence is illuminated. It is noteworthy that individuals f ramed the decision to relocate as autonomous, even as their narratives reveal that it was co constructed by case workers, discharge planners, and kin. This framing is a way individuals attempt to exert their continued agency in shaping the life course even within the context of institutionalization However, it is hard to determine the extent of an portraying themselves as passive victims. Furthermore, those individuals who entered the hospital system with high acuity levels or limited resources like housing or nearby family members found themselves with particularly diminished autonomy in the decision. The ambiguity surrounding autonomy in the r elocation decision compli cates separating relocation into a neat typology of forced versus voluntary relocation.
28 Transitioning to nursing home care allowed individuals to deal with (Becker 1 997:57). Indeed, o ne cannot assume that relocating to the nursing home was only a disruption; for many of the residents I inte rviewed, the relocation to long term care was the beginning of reorganization. The nursing home environment helps individuals to b uild routines and manage their chronic illness making reorganization a possibility. As Becker (1997) contends, continuity is only possible for those individuals whose health conditions become relatively stable and do not interfere greatly with their daily routine. For those with chronic illness for whom disruption is an ever present process of life -periods of limbo and reorganization overlap and are part of a continuum Therefore, t he long term care facility, just like other transitions of the life cours e, can exacerbate disruptions or facilitate continuity (Becker 1997:146). As Ken states: I t might have With so few indi viduals transitioning from long term care back to the community, e lderly adults in lo ng term care are left with little choice but to reorganize their lives. As a consequence of feeling like their transition is a permanent one, some individuals resist further disruption to the continuity they have developed in long term care and are not int erested in transition to a different level of care. Some residents feel no need to disrupt their current routines or possibly the level of chronic illness management attained. This has implications for current programs, like Money Follows the Person, desig ned to help people transition back to living independently. Individuals may be afraid to ta ke the step to move out of long term care for fear of further disruption. As with all the decisions
29 surrounding relocation, a person centered approach 1 focusing on individual context and life course experiences should help inform how an individual would experience transition. Returning to the challenge of Jennifer Cole (2013), the life course is not static even for those elderly individuals in insti tutionalized care. The residents did not see life i n long term care as a foreclosure; but rather, continued to seek continuity to reorganize their notions of self and participate in their nursing home experience as active agents (Jervis 2001). Residents continued to wrestle with the tension between the inherent in institutionalization and the reorganization. Limitations histories and previous experiences with change and transition. Furthermore, due to the limitation in resources and time, I was unable to perform data collection with the multip le agents involved in the relocation decision making process such as discharge planners, family members, and nursing home administrators. In addition, this study was limited by the memory of individuals, all of whom had relocated many years prior to our in terview. It was beyond the scope of this research to determine the medical viability and safety of delaying the transition into or of moving out of the nursing home facility. The results from this research are not necessarily generalizable, but offer a l ook at the lived experience of a few elderly adults in long term care. Their experiences are not necessarily 1 A person centered focus involves integrated care models entailing partnerships among needs, and preferences and patients have the education and support they need to make decisions and pa
30 relocating and living in long term care. Finally, the specific features of the nursing home facilit ies examined in this research -which had a high level of quality care, followed a person centered approach, and offered the elderly many programs -may impact the relocation experience. Facilities without such conditions of decent care and adequate physical environment were not part of the investigation W ithout such things, it is unlikely that individuals would feel so positive or be able to find continuity in the transition (Jervis 2001). Future Research Thi s research was able to illuminate the perspectives of one significant agent in the relocation and transition experience : the elderly adult. Further investigation of the different agents involved specifically through ethnographic methods -would provide addi tional insight into the relocation process. Conducting participant observ ation as individuals go through the decision process along with interview s with hospital discharge planners and social workers, doctors, family members, nursing home staff, and the el derly individuals during and after the disruption period would provide additional important information In addition, the negative perceptions that participants expressed about the prospect of moving in to assisted living requires further investigation as well as the parallel periods of disruption, limbo, and reorganization experienced by elderly individuals moving into lower levels of care. Furthermore the implementation and promotion of programs like Money Follows the Person necessitates a further investigation of the transition experience back to the community to further illuminate late
31 life disruptions and reorganization. Would the period of limbo last as long as that felt while living in long term care?
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