| Kokorelias KM. The lived palliative care experiences of community-dwelling older adults with dementia in South Western Ontario [thesis]. The University of Western Ontario; 2016 [cited 2021 Jul 4]. Available from: https://ir.lib.uwo.ca/etd/4179 34 | |
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| Finding 1 | Receiving palliative care services at home allowed them to be surrounded by those they recognize and love … provided them with a greater sense of safety and comfort (U) |
| Illustration | “In the hospital I felt sick because I was around sick people, strangers. At home, my wife is healthy so I feel healthy except for when the nurses come. They remind me I’m sick. I want to be home safe around her.”(p.53) |
| Finding 2 | Being surrounded by their family members was key to defining why the home was the preferred place of the older adults to receive palliative care (U) |
| Illustration | “I belong here. This is my house. My family is here.”(p.53) |
| Finding 3 | Compared their experiences to that of being in a hospital surrounded by strangers (U) |
| Illustration | “I would rather die now than spend the time in the hospital … I don’t know those people. They’re strangers. Here my wife is. My pictures are here. My life was here. I just wish we started this early and that I didn’t waste time in the hospital with strangers.”(p.54) |
| Finding 4 | Wanted their family members to provide the majority of their care (U) |
| Illustration | “Well now people come to my house so I don’t have to go to them. But now my daughter can do everything for me instead of them. Because I am home.”(p.54) |
| Finding 5 | Homes as the place where they “belong” … key goal, in terms of care, was for them to be able to stay in their homes for as long as possible (U) |
| Illustration | [“Home] is where I belong. I don’t belong in a hospital with the strangers. I belong at home. This is my house. This is where my family is.”(p.54) |
| Finding 6 | Grateful that community-health palliative care professionals were able to enter their homes and assist their family members with providing care to them (U) |
| Illustration | “I like it when they come. They help out my sister. They never hurt me. I feel better when they leave … And I like that they come to help her.”(p.54) |
| Finding 7 | Spending some of their final days at home seemed to prompt familiar and important memories (U) |
| Illustration | “I raised my babies here. My daughter has her babies here. I need to be home with my family. My stuff is here.”(p.54) |
| Finding 8 | The familiar environment of their home also allowed the older adults to be more independent (U) |
| Illustration | “I have dementia so I don’t know everything … But I do know some things … I like that when I’m home I can remember where we keep the cups so I can even get my own water.”(p.54) |
| Finding 9 | Older participants acknowledged that they were dying (U) |
| Illustration | “Well it means I am dying and there is nothing nobody can do to stop it … And I’m okay with that. So with palliative care I can … I can feel I can stay like this for years … here at home.”(p.55) |
| Finding 10 | Once they came to terms with the fact that their conditions were incurable and a palliative care plan was in place, they were able to better accept the care provided to them by health care professionals (U) |
| Illustration | “And I like to be in control, but other than that, you know what, the services that I get at my house, I can’t complain. It, it is wonderful. And they seem to go out of their way and they seem to be caring and professional. I know I need them because I am dying and it’s palliative. And they are quite helpful, so to be honest with you. I have no complaints … for this situation because I can’t do it for myself anymore.”(p.55) |
| Finding 11 | Being less fearful of death now that they are receiving palliative care services in their home (U) |
| Illustration | “But I like it when they [nurses] come. They explain things. And I am less scared because … when I forget they tell me it’s okay and they are like doctors, right so it makes me less scared … I know when she [community health nurse] comes she will check or she will tell my husband or son things are getting bad and when I should expect to go. The nurses make me feel less scared of death.”(p.56) |
| Finding 12 | They would rather die sooner than receive care in a hospital (U) |
| Illustration | “At the hospital, I thought I was going to die. But at home even if I am sicker or you know I can die. But I am at home. I want to be home even if I die sooner here.”(p.64) |
| Finding 13 | One of the biggest changes … was the experience of becoming home-bound (U) |
| Illustration | “We’re both stuck at home.”(p.56) |
| Finding 14 | Felt that their end-of-life wishes to receive care at home were being honoured (U) |
| Illustration | “I won’t get better or they won’t try to keep me alive with a machine. So then as soon as I found that out, I said ‘take me home.’ But I couldn’t just go home. So they said they’d send someone once a week. And that’s it. This is what I wanted and because of my wife and the people who come I can. This is what I want. My wish is to be here. I got my wish.”(p.63-4) |
| Finding 15 | Fearful that their diagnosis would progress to the point, where the services provided by the CCAC would not be enough for them to continue to receive all their care at home (U) |
| Illustration | “Well, I can’t do things for myself much. Like I can’t even take my pills. My wife has to hand them to me. It’s not because I can’t. It’s just to make sure I don’t forget. Because if I forget, then I can get really bad. But one day I may forget more. And well, when that happens, if I am even alive well then maybe I have to go somewhere. Dementia makes it hard for me to know.”(p.65) |
U, unequivocal; CCAC, community care access centers.