Most of the caregivers (26 of 37) were living together at home with the care recipient. Six care recipients of the interviewed people were in a long term care facility, and five were in assisted living. Although most of the people we interviewed were caring for their care recipient at home, many caregivers anticipated that there might be a time in the future when the care recipient would have to go to a facility where there would be more support. Some care recipients had gone through transition periods, from hospital to interim care to a facility. Several caregivers spoke about their experiences when their care recipient needed hospital care, some positive and some negative experiences. Overall, caregivers were able to point out areas where healthcare institutions could be doing better with respect to quality of care for their care recipient and for the caregiver.
Facility versus caring at home
Some caregivers indicated that there was a clear point when it was decided that it was better for the care recipient to move to a long-term care facility or an independent living organization. For example, Mrs Smith’s mother moved to an independent living facility for safety reasons when the Smiths had to go to Holland for a longer period to care for Mr. Smith’s mother. Ginny’s mother moved out of the house when she started using a wheelchair as Ginny’s home was too small for a wheelchair.
Fernanda and Christine both reached a limit in their own ability to continue caring for their mothers. Fernanda says: “I did one of the toughest things I’ve had to do. I went to the hospital and I said to them, ‘Look, I just… I can’t fight anymore. I don’t have the capabilities of helping her.’”
Although most caregivers we interviewed cared for their care recipient at home, some felt they were close to their own limits and had started thinking about a facility as an alternative. It was a painful and difficult decision with the realization that it was no longer possible to continue the care at home. At the same time, caregivers know that they had to accept the process at some point. Donovan said, “That’s [future placement in a facility] very difficult for me to deal with, very difficult. I don’t know how I’m going to deal with it down the road.” Although Drew expects to feel some guilt and maybe somewhat like a failure if ever he decides to send his mother to a care facility, he said, “I think I’m grounded enough to understand that when the time—if it ever does come—where her needs surpass those that we are able to provide at home, then I think we’ll see it because, again, the first and foremost priority in this situation is her, not me.”
Alyce, Sheni, and Anne think there is no other option for their husbands than to remain home. Sheni said, “I am looking after him basically because what other alternative is there?”
Anne said, “And there was one point when he was not doing well at all and we thought he should go into a home. And we had them come, and they assessed us. And all they said to us was ‘There’s people in a lot worse shape than you. You can’t get into a home.’ And that was it. Like, I feel there’s no support whatsoever to help people like that.”
Christiane didn’t feel ready to let her husband go to a facility: “When he was hospitalized, they were always telling me, they were seeing the state he was in: ‘You can leave him here if you want and we will take care of the placement.’ I said, ‘Well, I am not ready yet. And,” I added, ‘you are not ready for him either; you are not able to control him when he has dementia.’”
Long term care
Caregivers also saw positive sides to having someone cared for in a facility. In a facility, they expected their care recipient to feel less isolated and to participate in social activities. Matsonia said, “They tell me that when he does stay in full-time residential care, that we’ll actually have more fun because I’ve never been a wife to him. I’ve always been a caregiver.”
Ginny and Christiane both described having more time on their hands since their care recipient moved to a facility. They also felt that the care recipients were in a safe environment.
Several caregivers experienced negative incidents in facilities and felt a need to visit frequently to make sure that everything was going well. Christiane, for example, had a challenging time with the placement of her husband because there were many things happening that she felt were unacceptable: she arrives to find her husband’s room excessively hot, he is regularly dressed in clothes that are too warm, and he is not always included in the social activities. The Smith’s mother was in a private facility at the time of the interview, but they too were not always satisfied with the care provided.
Emergency visits and hospitalization
Several caregivers had experiences with hospitalization. Sometimes it was a onetime experience without any significant consequences. However, several care recipients were frequently admitted to the hospital for various reasons related to their illness. In general, these were described as challenging and emotional periods. For example, Sheni said, “[My husband] ended up at the rehab centre for a few days before again having to go back to the hospital with another emergency situation that was caused by him choking on food and aspirating some food into his lungs. And so, after that, he was at the hospital again for a few weeks and then back to the rehab centre. And this went on and on. He was at the rehab centre for close to a year.”
Fernanda has gone through a 13 year period during which her mother has been hospitalized frequently. Overall, she describes this experience as positive, but she sometimes had to resolve some situations where her mother didn’t receive the right care. In one case, her mother was in unbearable pain but not receiving the right treatment. As soon as she understood the situation, she called her husband. She said, “After the nurse told me that, I phoned [my husband] and I said, ‘You better come here.’ And I just feel that after all these years of dealing with hospitals, all these entire crises, I have found it amazing that when there’s a man present people take extra attention.”