Hospitals and facilities
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.’”
Christine realized she had to leave her mother’s home to protect herself. When she left, her mother moved to a care facility.
I was very fortunate that when I left… fortunate… I had no more, I didn’t have an ounce of caregiving left in me. I had no physical or emotional strength left, and I don’t want to sound like a drama queen, but that’s the case. I really didn’t, I wasn’t… […]
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.”
Christiane struggled with the decision to move her husband to a facility; her parents helped her make the decision.
So, there was the placement for assisted living, they told me in the month of… Well when you came, it was the 23rd or 27th, I told you, I remember, I saw that in the notes. And then, before the holidays, just before the holidays, they told me that there […]
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.’”
Donovan and his wife considered all kinds of options, including a facility. In the end, they decided to continue living at home with the help of live-in caregivers.
When we were making a decision which route to go, some of the facilities that we saw inside I just thought, “No. At this point I can’t do that. I can’t see putting her in there when we can still stay in our home as long as I’m able to […]
Rowdyneko felt that it was not her responsibility to decide that her husband could not return home. She felt she had let him down when he was moved to a facility.
So, this time round they are kind of doing this to me again. “Well, if you can’t look after him at home,” because he was in and out, in and out, in and out, “he’ll have to go somewhere.” I just said, “I am not wearing this. Send him home.” […]
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.
Christiane has to check-up regularly on how the facility is caring for her husband.
And you have to be there regularly, because… some stupid things happen, it doesn’t make sense. One day last week—it was very, very hot—a long sleeve shirt and a tank top under. He has some nice short sleeve shirts. So, I had to hide his long sleeve shirts. And the […]
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.”
When Rowdyneko’s husband was in the hospital, she often felt the staff just wanted to send him home as quickly as possible.
It’s interesting. Some of it I could do a rant on this one. Often what happens is, well often, over say 20 I’d say in the last three years, two years we’ve had 25 ambulance calls. In the last three years we’ve probably had 35 admissions and ambulance calls. And […]
When Mike’s wife was discharged, he sent her straight back to the emergency as he felt she was too sick to come home.
If you want your partner to get the best of care, you have to ruffle feathers. At some point in time don’t be afraid to ruffle and say, “No, I don’t accept this. This is wrong. You’re doing it wrong.” Where I got into this with my wife quite a […]
Snoopey has had some negative experiences in the hospital.
There was this one time up at the hospital, my mom was very sick. She came in; the doctor sent her home. A few hours later she came back. The doctor thought she was faking it and just shoved her aside like 6-8 hours until the next person came on. […]
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.”
Fernanda found good support from the client advocacy office, when her mother was in great pain without any specific treatment for it.
So, I called the client advocacy office and they were phenomenal. But then I think they knew I wasn’t, she wasn’t going to leave there. As my name is Fernanda, my mother was not going to go back home. And spoke to them and we basically tore that whole, that […]
In hindsight, Daphne would have transferred her father out of the hospital where he received unsatisfactory care.
They weren’t turning him. They wouldn’t feed him. They didn’t put him on any special equipment. And lucky by the grace of God and my angel I knew about all of this, because I had worked medicine and acute surgery. I couldn’t believe that a small hospital didn’t have the […]
Hospital staff can make use of the knowledge caregivers have about their loved-ones, as in Drew’s case.
And yet when we were up at emergency, it was a ghastly experience because the level of understanding wasn’t there. So the ability of the system, I guess to adapt on an individual basis hasn’t, just hasn’t happened. So, for example the first… just to get the x-rays, it was […]
It would be so much easier for people who have to go to emergency frequently to enter in a sort of fast re-entry system.
Lillian: Here’s one thing that I would love to see though, is that I kind of wish that the system could recognize us when we show up. I mean, he used to be a frequent flyer at the emergency department because he had so many seizures and we were there routine, […]
Review date: 2019-09