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Table 3 Transitioning to long-term care

From: The journey with dementia from the perspective of bereaved family caregivers: a qualitative descriptive study

Subtheme

Data

Tipping point

“I tried to get home care to come in and they said unless he was willing to cooperate - that was the word, this wonderful word - if he wasn’t willing to cooperate, they couldn’t come in and help me…I thought that was the tipping point and I knew at that point that he needed to go to the program or rather into long-term care.” ~ Lois

“And I don’t know what triggered putting him in a nursing home. I think, it was that my two kids thought I wasn’t going to last. So we put him in the first care home.” ~ Jane

“It ended up my kids took me to Mexico, so I had to put Helen in at [name of LTC facility] just for the time I was away… but when I came back she had fallen and couldn’t walk so I couldn’t take her home, so it was decided then that she would maybe stay there which she did.” ~ Rudy

Hardest day

“Like the day I had to sign the papers to put her in [facility]. That was my hardest day. You know, that was the day that she wasn’t coming back home. That was the last time… That was the hardest.” ~ Charles

“…All the while you’re lying, right, you had to tell them it was the best thing for them, so…but you’re trying to, you know, remove myself as much as you could, but yet knowing that…so it’s just really hard as you can imagine… And I realized my end was coming of caregiving for Dad, knowing that the time in that home for Dad would be very different. Dad would change, I would change. ~Tom

Integrating into facility

“But, on the other hand, the staff they tried their very, very best to make it—not like my home, but kind of a composite home and they tried very hard to make it welcoming and, and inclusive for all of the people including the caregivers that were there.” ~ Lois

“In order to comfort my mom in some instances some of the caregivers would actually lie to her and tell her that she’d better get her coat on because I’m coming to get her and they’d make her stand at the top of the stairs and wait for me to come which I never knew I was going to be coming, so that was really sad. The training was lacking in some of the caregivers, not all, but in a few it was really, really sad.” ~ Laurie

Caring in LTC

“I very much felt that I was part of the staff. I felt that they really needed the caregivers to continue to do a lot for the people, again, because their staff was so short… You know, if you would go and you would help feed your person, that was huge for them and they really did appreciate it … and I mean, a lot of caregivers want to do it anyway, so it was a win-win situation.” ~ Lois

“I went in the morning, you know, came home for lunch, and would go back again around before supper time so I could help her you know, feed her and this sort of thing. If she would eat.” ~ Charles