Finding our way home: home and end-of-life transitions for people with disabilities.
Subject: Disabled persons (Research)
Disabled persons (Services)
Dwellings (Services)
Housing (Services)
Authors: Stienstra, Deborah
Wiebe, Rhonda
Pub Date: 06/22/2006
Publication: Name: Canadian Journal of Urban Research Publisher: Institute of Urban Studies Audience: Academic Format: Magazine/Journal Subject: Social sciences Copyright: COPYRIGHT 2006 Institute of Urban Studies ISSN: 1188-3774
Issue: Date: Summer, 2006 Source Volume: 15 Source Issue: 1
Topic: Event Code: 310 Science & research; 360 Services information
Product: Product Code: 1520010 Housing incl Mobile Homes NAICS Code: 2332 Residential Building Construction SIC Code: 1520 Residential Building Construction
Geographic: Geographic Scope: Canada Geographic Code: 1CANA Canada
Accession Number: 155783066
Full Text: Abstract

This article presents research findings from a larger research project entitled "Finding our Way Home" which explored the narrative accounts of end-of-life transitions of 24 people with disabilities living in inner-city Winnipeg, Manitoba, Canada as well as of 8 service providers with a special emphasis on their housing needs during these transitions. We suggest that end-of-life transitions for people with disabilities who live in Winnipeg's inner-city, especially those related to housing, are complicated by poverty, feelings of safety and security, the provision of appropriate supports and other life circumstances. End-of-life housing issues for these people have become issues related to home--creating, maintaining and going home.

Keywords: People with disabilities, housing, end-of-life

Resume

Cet article presente les resultats d'un plus grand projet de recherche intitule "Finding our Way Home". Il s'agit d'une etude concernant la transition residentielle de la fin du cycle de vie de vingt-quatre handicapes vivant dans les quartiers centraux de Winnipeg. L'etude porte egalement sur huit fournisseurs de service se specialisant, entre autres, sur les besoins residentielles pendant cette transition. Nous suggerons que cette transition de vie pour les handicape qui vivent dans les quartiers centraux de Winnipeg, particulierement en ce qui concerne le logement, est compliquee par la pauvrete, un desir de securite, les dispositions de support approprie et d'autres circonstances de vie. Les enjeux de la transition residentielle de la fin du cycle de vie sont lies a la creation, maintien et l'accessibilite residentielle.

Mots cles: handicapes, logement et cycle de la fin de la vie

Introduction

People with disabilities often do not want to talk about death or dying, but want to rather pay attention to living their lives as completely and meaningfully as they can. Research on these end-of-life transitions is complex and complicated. It is shaped in part by attitudes about death and dying among people with disabilities, as well as by the assumptions of care providers, researchers and individuals themselves about what end-of-life transitions for people with disabilities are, when they happen and what is required to facilitate these transitions.

This article presents research findings from a larger research project entitled "Finding our Way Home" (1) which explored the narrative accounts of end-of-life transitions of 24 people with disabilities living in inner-city Winnipeg, Manitoba, Canada as well as of 8 service providers with a special emphasis on their housing needs during these transitions. We suggest that end-of-life transitions for people with disabilities who live in Winnipeg's inner-city, especially those related to housing, are complicated by poverty, feelings of safety and security, the provision of appropriate supports and other life circumstances. End-of-life housing issues for these people have become issues related to home--creating, maintaining and going home.

What and Where is Home?

Housing is a basic physical and psychological human need. Many international conventions, including the International Convention on Economic, Social and Cultural Rights, and the Convention on the Elimination of All Forms of Discrimination against Women recognize that housing is a basic human right (UN-HCHR). The United Nations defines adequate housing as including security of tenure, availability of services, affordability, habitability, accessibility, location, and cultural adequacy. Housing provides shelter from the elements and can be a haven from psychological and social stresses. It is also a source of identity as a place where a family/household establishes itself in society. Beyond the level of the individual home, housing is also important because housing units are set in relation to each other. This creates neighbourhoods and communities that form the physical infrastructure of group life (Fullilove 2003).

Home is also a critical concept both in the literature and in this study. In any initial reference to home, we may think of a physical location, but the literature reminds us of the many different connotations of home. "Perhaps the most common concept of home is of a material, bounded place where our own activity spaces and those of people closest to us overlap. It is ... a place where we are accepted and affirmed as who we want to be ... Home is to do with our roots, and is, therefore a cultural as well as a spatial place ... Home is inseparable from the concept of identity" (Teather 1999: 4). Somerville offers an extensive collection of understandings of home from physical shelter to emotional or psychological security.

The disability geography literature (Butler and Parr 1999; Gleeson 1999; Kitchin 2000) challenges us to recognize how geographies and space create, shape and maintain disabilities, both now and in our past. Philo (1987) illustrates how geography was organized to separate people with mental health or intellectual disabilities from the rest of society, in part because it was believed that these were suitable environments for treatment and recovery. Hugman (1999) extends the analysis to modern day institutions for older persons including nursing homes and residential homes. "The tending of the elderly body in these institutions creates and sustains an identity of the elderly person as dependent, docile, accepting and (most preferred by staff) grateful" (198). People with disabilities live in spaces that, by and large, have not been created by and for them. For many people with physical disabilities, their housing or workspaces require changes to be accessible to them. While universal design principles have been created (Preiser and Ostroff 2001), they are not yet well integrated into the design of new buildings or renovations of existing buildings. For all people with disabilities, inaccessible environments, including housing, leave them feeling that they are 'out of place' (Kitchin 2000: 15).

When do End-of-Life Transitions Occur?

As many people with disabilities suggest, their lives include the whole range of life activities as well as those transitions at end-of-life. One theoretical perspective that is especially useful in linking disability, housing and end-of-life transitions is the life course approach. Disability studies scholars, including Priestley (2001), suggest that when we want to understand how the lives of people with disabilities are shaped at a particular moment in time, including end-of-life, we consider their lives as trajectories examining the key factors that shape the course of their lives. "The patterns of our lives are influenced by many factors (ranging from the global socio-economic context to unique aspects of personal biography) ... Thinking about life course trajectories also helps us to think about the different kinds of resources, or capital, that people draw upon during their lives" (241-2). Our article suggests that this approach can be used to examine how housing can be a factor in understanding the life courses of people with disabilities especially during their end-of-life transitions.

Approaches to palliative care echo the need to consider life trajectories as a way to understand different care options for people at the end of their lives. Recent approaches to palliative care suggest that there is an on-going need for both curative and palliative care, in inverse proportions, so that as curative care decreases, palliative increases. Palliative care research identifies different trajectories in end-of-life transitions which require different types of care interventions: i) peaks and valleys in the course of the illness; ii) descending plateaus representative of general deterioration with periods of no change; iii) downward slopes where the disease is progressive and deteriorating; and iv) gradual slants that are representative of a more slowly moving, even descent to poorer health (Martocchio 1982). Yet the palliative care approaches are largely based in exploring end-of-life transitions among those living with cancer (Doyle et al 2004). "There is very little literature on end-of-life transitions among people with disabilities (2). One review of the literature on end-of-life and people with intellectual disabilities suggests that there are significant and unique ethical, communication and comprehension issues for this group of people (Tuffrey-Wijne 2003). Our article addresses this gap by examining housing as a factor in shaping the end-of-life transitions of people with disabilities.

The Research

The "Finding Our Way Home" project was based at the Canadian Centre on Disability Studies (CCDS) and included two additional project partners--Fokus Housing Inc. (an independent living housing organization) and the First Nations disAbility Association of Manitoba (FNDA). An advisory group of people with disabilities, representatives of disability advocacy organizations, service providers and policy makers provided support and guidance through the project. This research was funded by the Winnipeg Inner-City Research Alliance, which in turn received its funding from the Social Sciences and Humanities Research Council and the Canada Mortgage and Housing Corporation.

This qualitative research study included individual in-depth interviews with 24 people with disabilities, interviews with 8 service providers, a literature review and policy analysis. Interviews took place in May and June 2003. Participants were asked about their housing situations including physical dwellings and household composition, their requirements for home supports, the linkages, if any, between their housing situation and their need for home support, their satisfaction in their housing situation and any obstacles they face in their housing situation. Data was analyzed using key theme analysis with themes derived both from the literature and from the data. The advisory committee contributed to refining the research objectives, research participant recruitment, data analysis and development of recommendations. By the completion of the project, at least half of the individual participants had died or in the words of one participant "gone home." We honour their memory in this work.

The Participants

In our initial discussions with our partners and advisory committee to frame the strategy for recruiting participants, we were challenged to discuss these issues in a way that did not suggest that people with disabilities were facing death. Too often, our committee members argued, the public portrayal of people with disabilities consists of a picture composed of tragic individuals who have to face extreme hardship, only to meet an untimely death. Our advisors felt we might find few people willing to talk with us if we pitched the research as about dying or even, in some committee members' minds, end-of-life. In the end, we advertised for participants who would talk about 'significant life and health transitions' and relied on the committee members to assist us in recruiting appropriate participants. Many of the participants came forward on the recommendation of trusted community advocates and health care workers.

Participants ranged in age from 27 to 83 years old. A majority of the participants (13/24) identified themselves as First Nations or Aboriginal (3). Eight participants were women and 16 were men. It is unclear from the research results why so few of the participants were women, but we anticipate that more men than women with disabilities use the services of organizations which participated in the recruitment strategy. We worked directly with disease-specific organizations such as the Multiple Sclerosis Society, or with women-focused organizations in the inner city such as women's centres. The number of women participants may have increased using those strategies.

Participants included mothers whose children were present at the interview, mothers and fathers who could no longer live with their underage children, grandmothers, grandfathers, single people, persons in committed relationships, First Nations people, immigrants, people employed, people living on social assistance, and individuals whose first languages were Saulteaux, Cree, Dene, Inuit, Ukrainian, Polish or French. Translators were provided when requested. We also interviewed eight service providers from disability, First Nations disability-related, and palliative care organizations.

Winnipeg's Inner-city

All people with disabilities who were interviewed lived in one of five housing settings in Winnipeg's inner-city. Winnipeg is a medium-sized city (over 650,000 residents) based along the forks of two rivers, the Red and the Assiniboine, right in the geographic center of Canada. As early as the 1880s, Winnipeg developed a clear pattern of residential segregation, with prosperous suburbs to the south along the Assiniboine River, and a shanty town in the north end. The long-term effects of this division have proved hard to erase. Winnipeg's inner-city, as with many inner cities, is characterized by segregation in terms of income, race, ethnicity and increasingly, we suggest, by disability status. The dispossessed still gather in the cheap housing just to the north of the business district. The reputation of this area has hampered attempts to reinvigorate the city centre (The Metropolis Project, 2004). One of the significant shifts within the core area of Winnipeg since the 1980s, through the Core Area Initiatives initiated in 1981 and renewed in 1986, has been the growth of accessible housing for people with disabilities interconnected with an extensive skywalk system which allows access from many of these housing locations to business, shopping and city services (central library, city hall). With these changes an increasing number of people with disabilities could live and work in this area. Current efforts to rejuvenate the core area will, in part, extend the accessible corridors of the inner city.

The Housing Settings

We interviewed participants in five different housing locations--their own homes, transitional housing, independent living housing clusters, long term care facilities and acute care hospitals. These reflect the predominant housing locations for people with disabilities throughout their lives.

Eight participants (four men and four women, and five Aboriginal people) lived in their own home. This category includes private houses and apartments either owned or rented by the participant or a family member of that participant. The majority of these participants had lived in the same home between 1 and 8 years. Most participants who lived in their own homes lived in Manitoba Housing, a public housing authority which provides housing for those of low and moderate income and those with specialized needs. In 2004, rental rates were based on a rent-geared-to-income rate of between 25 and 27% of household income.

Five participants (four First Nations, four men and one woman) lived in transitional housing. These are temporary places of residence (including medical boarding housing, rehabilitation housing and core area hotel rooms) designed for persons in health crises who are homeless, are waiting for placement in a more permanent facility, live in hospices, or need to live in the core area of Winnipeg in order to have access to medical treatment not available in their home communities. Participants in transitional housing stayed less than one year.

Four participants (two women and two men, one First Nations person) lived in independent living housing clusters. Participants lived in these settings anywhere from six months to 20 years. Clusters are housing designed for persons with physical disabilities and governed by the belief that each tenant is committed to the common goal of contributing to the maintenance of the housing on an ongoing basis. These homes are set up as individual apartments within a larger group setting. Every tenant within the cluster has a right to self control, a free and independent life style, and self management of service provision. Independent living clusters integrate adults who have demonstrated capacity to govern their own affairs into suitable living environments within the larger community through permanent housing and permanent, shared support services (Ten Ten Sinclair Housing 2004).

Five participants (one Aboriginal person, one woman and four men) lived in long term care facilities. Participants lived in these facilities from less than six months to as long as seven years. These facilities offer 24-hour professional nursing services to eligible individuals who can no longer manage independently at home with family support and/or community services like Home Care. Long term care facilities are mandated by the Winnipeg Regional Health Authority (WRHA) to provide personal care, physician services, basic medical supplies, food and nutrition, medications, activities/recreation, access to occupational, speech-language and physiotherapists, housekeeping, laundry/linen services, and access to transportation. Eligibility is based on a comprehensive multidisciplinary assessment. The residential charge for Personal Care Home services is based on the income of the resident, with no charge for those on social assistance and other charges ranging in 2004 from $25.40 to $59.30 per day.

Two participants (both men and First Nations) resided in an acute care hospital. Hospitals are facilities where patients have been assessed as requiring the level of health care services that can only be provided in an acute setting. The length of an acute care hospital stay in Manitoba is limited to between one and 59 days. This term excludes long term and rehabilitation hospitals (Manitoba Centre for Health Policy 2004). The participants in acute care hospitals had the shortest stays of all participants, between 0 and 6 months, although they had repeated hospital stays of a month or more.

Findings/Results

What we Learned in Partnerships

Our partners, both the formal partners Fokus Housing and the First Nations Disability Association (FNDA), as well as those less formal partners who participated in the advisory committee, were critical to the success of this research, to establishing its credibility in their own communities of interest and to following up on the recommendations.

For example, FNDA assisted greatly in identifying First Nations participants so that the results include a very high proportion of First Nations persons with disabilities; this in turn reflects who lives in Winnipeg's inner-city. Almost half of the participants were of Aboriginal descent; a representation we had anticipated as highly unlikely given the mistrust between First Nations peoples and predominantly white institutions and the fact that the researcher conducting interviews was not of the same cultural background. It also illustrated how important it was to have a partner based in the communities we were researching.

Partners on the advisory committee helped us struggle with how to address end-of-life issues in an appropriate way. We wanted to be sensitive when talking to participants about death because discussions of that nature can be emotionally difficult and socially taboo. We spent hours and countless emails coming to a consensus about the wording, "end-of-life transitions" for the participant recruitment material. As a result of this engagement participants did come forward; some talked about death, and others talked about survival in a city where they lived in substandard housing and just wanted to avoid the street violence all around them.

Our partners also helped us to make sure that the recommendations that were developed were written so that they could be used to advocate for change. They helped to provide clear and focused recommendations that included target audiences who could take action on each.

Life Transitions

Our research suggests end-of-life transitions may be different for people with disabilities than those who do not experience disability. One of the unexpected and stark findings of our research is that even though approximately half of the participants had died by the time we had completed the work, not one of them reported being involved in any kind of hospice or palliative program. This suggests a gap in the palliative and end-of-life services available in Winnipeg.

The participants confirmed our decision to focus on transitions rather than on death and dying. Most individuals wanted to talk about their lives more than they did about their transitions and the role of housing in those transitions. For many, their own sense of their lives and where they were at in the moment were more important than their medical prognosis. The youngest participant lived in her own home and had a hereditary condition that could limit her life expectancy considerably, but she spent much of the interview discussing her life.

For some participants, especially First Nations participants, death was part of a longer journey.

For others, death and dying were viewed differently.

For still others, death had been faced and would be again.

For most of our participants, the disease or condition that precipitated significant health and life transitions had been part of their lives for considerable time and they had lived with shifts in their health. All had lived with one or more accommodations which included attendant care, home care, dialysis, amputation, prescription medicines, wheelchairs, canes, walkers, assistive devices for visual impairments, environmental controls, oxygen provision, working dogs, naturopathic remedies, therapeutic counseling, devices for speech enhancement, etc. Some currently or had in the recent past managed their own care by hiring and directing service providers and understood care in the independent living model.

For some, the transition to their current housing situation was the result of their health transitions.

Living, Home and End-of-Life Transitions

There were considerable differences in the life and transition experiences between participants in different housing settings. Those living in more institutional settings (hospital, transitional housing, and long-term care institutions) had lived less time in the setting and experienced more imminent health transitions than those in their own homes or in independent living settings. The participants in hospitals, transitional housing and long-term care facilities also experienced greater upheavals in their life circumstances as a result of their housing changes, but the service providers connected to their housing locations had more experience with end-of-life transitions. Those in their own home or in independent living settings described fewer health and life transitions and had fewer supports for dealing with end-of-life transitions. Their housing concerns were less related to the health conditions and supports, and more about their geographical location, including issues of safety.

For participants in acute care hospitals and transitional housing, physical and medical supports that they could not receive at home determined their housing setting.

At least three participants (two in transitional housing and one in a long-term care facility) were unable to reside with their children under 18 years. One participant had two children living with her in transitional housing, but was unable to have another son live with her. All the children and their mother experienced hardships linked to this situation.

Another participant who had been in transitional housing lost his housing when the landlord assumed he was dead.

While participants in independent living clusters spoke positively about their access to support care and the coordination of their care in a community setting, end-of-life care provided a greater challenge in this housing setting.

For participants living in their own home in Winnipeg's inner-city, safety issues were often critical to their choice of housing. The reputation of a neighbourhood and its residents played a key role in determining if participants chose to move into a given housing setting. Almost half of the participants living in their own homes had experienced physical assault or the threat of physical assault. The same number stated it was easier not to have any kind of relationship with neighbours. Harassment, noise, intoxicated behaviour, littering of drug paraphernalia and liquor bottles, and racial tensions were problems experienced by participants living in their own homes. Being in end-of-life transitions was, according to participants, already psychologically draining. Fearing for one's safety only compounded this stress.

Participants in different housing settings not only had different reasons for entering their current housing setting, but had different understandings of home shaped by their culture, location in transition and family status.

Being/Creating Home While in Transition

Home was not simply shelter or a location for the participants in our study. Their understanding of home ranged from the practical to the poetic, recognizing that accommodations to disability as well as family were necessary to creating a home. For many, their understanding of home was shaped by their cultural identity as well as their disabilities.

The oldest participant in the study, an 83 year old Aboriginal elder in a long-term care facility, pulled a picture of a Canadian flag from a bag when it was explained to him that the project interviewer would talk to him about housing.

Home for this man was not about location, it was about the destruction of his nation, and he used an image to convey his people's history of disenfranchisement and racial oppression.

Despite the intrusion of medical and other support care, many of our participants created home where they resided. This was easier for people who lived in long-term care facilities where staff had a responsibility for creating a feeling of home.

Other participants also understood home to be more than a location. Availability was key for some participants.

For participants in their own home, this setting was their preferred choice and was in large part their definition of home. Persons living in their own home appreciated their privacy and the comparative quiet when contrasted with previous hospital stays. People like private kitchens and bathrooms. Some participants like their neighbourhoods because they were close to public transportation, services, conveniences and an adult day program. All of these factors shaped their understanding of home.

For others, home was a setting where one's family and social circle could gather, and a restorative place that promoted well-being.

Conclusions

Several key findings and recommendations came from this research. Both the individual and service provider participants suggest that understandings of end-of-life that informs much of palliative care are often inadequate for addressing end-of-life transitions among people with disabilities. Life circumstances (employment, cultural background, family status, etc.) affected the end-of-life transitions of the individual participants significantly and to varying degrees dependent on their housing situations. Regardless of their life paths, people with disabilities in this study suggested they have limited options as they approach end-of-life because of the lack of accommodation for their disabilities. Finally, for the participants having a sense of home, which included family or other social supports, cultural background and accommodation to their disabilities, regardless of the housing setting was important in times of significant health transitions.

Drawing from these findings, the study makes six major recommendations.

1. Increase safe, affordable, accessible housing stock for persons with disabilities living in the core areas of Winnipeg.

2. Ensure people with disabilities have access to the end-of-life supports they require in the housing setting of their choice.

3. Promote independent living settings for end-of-life housing.

4. Provide accessible transitional housing for people with disabilities and their families.

5. Increase palliative care options for people with disabilities in core areas.

6. Ensure high standards of conduct by professionals providing services to persons with disabilities and First Nations peoples.

More generally the research also suggests innovative ways to understand the linkages between disability, housing and the life course in response to the existing literature and in more conceptual terms.

The results of our research reinforce many of the findings in the disability geography literature. Places for people with disabilities are often separated from the rest of society or are seen to be residual, left over in society. The participants of this study found that they had few choices as they experienced significant health and life transitions. For some, the options from which they were forced to choose created inhumane situations including limited access to their children, moving far away from their support systems to receive treatment and having to create new 'homes' during transitions which made them even more vulnerable. For some the only choice was to move into a separate place like a long-term care facility. While these are not the institutions of the past, they remain places where people who need significant assistance are separated from the rest of society.

Housing and a sense of home were critical for people with disabilities in this study and as the literature also suggests at all times to ensure their well-being and being part of a broader society. During end-of-life transitions, appropriate housing is essential, but not always available to people with disabilities in inner-city Winnipeg. Without this, 'going home' may feel like the only option.

Notes

(1) The full report can be found at: http://ius.uwinnipeg.ca/pdf/finding_our_way_ home.pdf

(2) A special issue of the Journal of Palliative Care (Fall 2006) on palliative care and people with disabilities addresses some of these gaps.

(3) These terms are used interchangeably and include Inuit, Metis, and First Nations peoples.

References

Butler, R. and H. Parr. eds. 1999. Mind and Body Spaces: Geographies of Illness, Impairment and Disability. London: Routledge.

Chan, W. 1999: Identity and home in the migration experiences of recent Hong Kong Chinese-Canadian migrants. In Embodied Geographies: Spaces, Bodies, and Rites of Passage, ed. E. Teather, 175-192. London: Routledge.

Doyle D, G. Hanks, NI Cherny and K. Calman. 2004. Oxford Textbook of Palliative Medicine, 3rd edition.

Fullilove, Mindy. 2003. Dwelling on Dwellings: The Importance of Housing in Community Health. Facts of Life: Issue Briefings for Health Reporters 8 (6): 9-13.

Gleeson, B. 1999. Geographies of Disability. London: Routledge.

Hugman R. 1999. Embodying old age. In Embodied Geographies: Spaces, Bodies, and Rites of Passage, ed. E. Teather, 193-208. London: Routledge.

Kitchin, R. 2000. Disability, Space and Society. Sheffield: Geographical Association.

Manitoba Centre for Health Policy. 2004. www.umanitoba.ca/centres/mchp

Martocchio, BC. 1982. Living While Dying. Bowi, MD: Robert J. Brody Company.

The Metropolis Project. 2004. http://pcerii.metropolis.net/frameset_e.html_

Philo, C. 1987. 'Fit localities for an asylum': the historical geography of the 'mad-business' in England viewed through the pages of The Asylum Journal. Journal of Historical Geography 13:398-415.

Preiser, W. and E. Ostroff, eds. 2001. Universal Design Handbook. McGraw Hill.

Priestley, M. ed. 2001. Disability and the Life Course. Cambridge: Cambridge University Press.

Teather, E.K. 1999. 'Introduction: Geographies of Personal Discovery.' In Embodied Geographies: Spaces, Bodies and Rites of Passage, ed. E.K. Teather, 1-26. London: Routledge.

Teather, EK, ed. 1999b. Embodied Geographies: Spaces, Bodies and Rites of Passage. London: Routledge.

Ten Ten Sinclair Housing Incorporated. 2004. Fokus Housing. http://www.tenten. mb.ca/fokus.htm (accessed May 25, 2004).

Tuffrey-Wijne, I. 2003. The Palliative Care Needs of People with Intellectual Disabilities: A Literature Review. Palliative Medicine 17: 55-62.

UNHCHR. Fact Sheet #21 The Human Right to Adequate Housing. http:// www.unhchr.ch/housing/fs21.htm#entitlements (accessed May 25, 2004).

Deborah Stienstra Disability Studies University of Manitoba

Rhonda Wiebe Community-based researcher
Home as privacy involves the power to control one's own
   boundaries ... Home as roots means one's source of identity and
   meaningfulness ... Home as abode corresponds to ... the minimal
   definition of home, that is anywhere that one happens to stay,
   whether it be a palace or a park bench ... Finally home as paradise
   is an idealization of all the positive forces of home fused together
   (as quoted in Chan 1999: 190).


Interviewer: How much longer do you think you'll live here?

   Participant: Probably 'til I die.

   Interviewer: Have they ever talked to you about life expectancy or
   anything like that?

   Participant: No, but I think it's weird, but I actually think I know
   how old I'll be when I die ... Eighty-six.


The next thing you know that person leaves to the spirit world,
   wherever, or in heaven wherever, or they call it happy hunting
   grounds. (First Nations participant in long-term care facility)


I think that one of the things too that we find is that especially
   with the individuals who are in that stage never look towards the
   end, cause that's one thing I know that our people don't look
   towards the end, because they are more a day to day people.
   (First Nations participant in own home)


I might end up going home. Going home and getting off dialysis. I
   know I'm not going to last very long if l get off dialysis.
   (participant in hospital)


I couldn't look after myself anymore, so I definitely had to come
   to a home. (participant in a long-term care facility)

   It was just so gradual in terms of the ongoing process of my
   disease that I recognized and my partner recognized that this was
   happening ... a good year before I ended up in here or in the
   hospital we knew what was happening ... I do not like living here.
   But I dislike the necessity of my being here. And I recognize that
   I need to be here because I wasn't making it at home.
  (participant in a long-term care facility)


The reason why I'm staying here, I was told to move into the city
   because of my dialysis. (participant in transitional housing)

   They gave me three locations where I could live, but I didn't want
   to live too far away from the clinic. I wanted to live within
   walking distance, and besides, I'm more familiar with the downtown
   area than other parts of the city. (Aboriginal participant in
   transitional housing)


Interviewer: How about school, do you guys go to school?

   Participant: No, there was no school this year, not since last
   September ... My seventeen year old, he tried to do a suicidal
   thing, twice already, but a psychiatrist is looking after him up
   north. He's not bad or anything like that, he was trying to do that
   twice.

   Interviewer: Oh, that's got to be so hard for you.

   Participant: I think he'll be okay for now. The reason he was
   trying to do that is cause his dad is drinking all the time.

   Interviewer: Drinking, that makes it really tough, but if he's
   staying with you, then he'll be okay?

   Participant: He'll be okay ...


When I was in rehab for seven months, they heard [I was dead]. See
   the housing I was living in was bigger, I could afford it, and the
   landlord got some people to move in because he heard that I was dead
   in October, and I came out in December, so a lot of things have
   changed, and all I've been doing is fighting, fighting, fighting the
   system. (participant in transitional housing.)


Interviewer: There had been a case of a person who was needing
   palliative care, end-of-life care in the unit, how did that go?

   Participant: When we did have that problem, the person didn't want
   to go anywhere ... stay here and unfortunately we didn't really know,
   we were relatively new at that kind of thing, we didn't really know
   what we should be doing, whether we should step in and let them go
   to the hospital or that kind of thing, send them to the hospital,
   because it is, when you're in a Fokus unit, you've got the right to
   say what you want done, and if you don't want to go then you don't
   go, and unfortunately the person passed on here and that was their
   choice. So we couldn't say very much.

   Interviewer: Was that uncomfortable for the rest of the people that
   someone would choose to die here?

   Participant: Yeah it was in a way, because face it, after twenty
   something years, we're all friends and we're all close, but again
   it's independence, so we had to obey the wishes that they wanted,
   unfortunately their relatives didn't see it that way, they were
   going to take us to court and everything eke, and we said you can't
   because it's independence, so they had to back down basically. So
   to get that far from that, now we do kind of step and say, this is
   not a good place for you to, because our staff aren't ready for that
   kind of thing, they're not trained for that kind of thing, so we ...
   kind of suggest ... I think it is time, I don't think you should be
   here anymore, I think, you know that kind of thing. And we try to be
   sensitive about it, and we end up doing the right thing, and it's
   hard, it's very hard. I mean it's like you're sending a friend to
   the hospital.


I don't want anybody to know my address ... Somebody will come if
   you tell the address where I'm staying. Only three people know
   where I'm staying. Too many people ask me where I'm staying, or do
   I have a phone, and they bother me ... That's when my sugar goes up
   and down. (participant in own home)


Can you see anything wrong with this? the elder asked, indicating
   the flag. The interviewer offered the suggestion, Red and white?
   The leaf, the living thing is red? Yes, yes! the elder responded,
   Years before anyone came to this country; our people were all
   Living ... so when Canada became what it is, they stole our leaf.
   This is our maple leaf in the first place. So what is this? [The
   outside stripes] are the white man, and [the leaf] is the red man.
   He can't escape. When asked where he learned of the story of the
   flag, the elder replied, They're not actually my stories, they're
   the stories of my ancestors.


This week I'm going shopping at St. Vital [mall] and I think at the
   end of the month we're going to the Exhibition. So I find that if
   you want to go somewhere you can probably, you have to wait
   sometimes a little bit. Their programs are very good here and there
   are no complaints, most people that I've spoken to are really
   pleased with the place. Sure you know, we have our ups and downs,
   but overall if you go outside and look at the grounds, how beautiful
   they are in front. (participant in long-term care facility)

   My children and my partner and I spent our time eating candies and
   chocolate ice cream while dancing at the spring social in the
   auditorium downstairs. That was fun. Sitting in the back yard on a
   nice day and having immediate access to the back yard and front yard
   is fun. Having the ability to talk to family and friends on the
   telephone ... Some of those things were done at home but there was
   always the additional stress as to whether home care attendants were
   going to remember to come or whether they were going to come at
   times that were convenient. (participant in a long-term care
   facility)


In order for me to get into suitable and affordable housing, the
   doctors had to write letters and quite a few social workers had to
   get involved to get me in. I would have been on a 3 year waiting
   list. (participant in transitional housing)


Interviewer: Was this the number one on your list?

   Participant: Yes, because morn and dad were here and all my
   siblings are in the surrounding area. (participant in long-term
   care facility)

   I need a lot of supports. I'd like to have a family member or
   someone [around] because they care about me. I need to have someone
   who's not going to pity me, who is going to respect me.
   (participant in own home)

   What would I like [in homing]? I don't [want to] have to deal with
   stairs. I guess mostly to have someone that ... stays in the
   building who could know if [you] have a problem and check on you.
   (participant in transitional housing)
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