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.’”
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… I was very fortunate to find where I’m living now, and it’s perhaps a bit more… I needed a place that was safe and quiet and that was—like, I didn’t have any furniture or anything so this is furnished and everything’s included. I was lucky to find this place because I felt at home here the minute I walked in. It was sunny like it is right now and the owner of the building—I mean, she wants her rent but she was also… I explained my situation that I was not working at the time, and that doesn’t look too good when you’re looking for an apartment to rent. But it so happened that I mentioned that I had been caregiving and she had taken care of her mother for many years and she knows exactly what I had been going through or how I felt. And it wasn’t out of pity she did this. She just felt that there was a bond there. And maybe I have a trusting face, but I said, “I can pay my rent every month. I promise and guarantee that.” And she believed me, and I was being truthful. I just I had to be here. And she took a chance on me and it’s worked out. I’ve been here about 10 months now.
And how it made me feel when I left? Well, I got a lot of phone calls from my sister telling me I, again, abandoned my mother and that she was going to report me for elder abuse and she would call up some of my friends and try and talk against me. And well, that wasn’t too smart because they experienced what I went through in a way, and they were not agreeing with her. So, if she was expecting support from them, she called the wrong people. But she was talking behind my back to anyone who would listen how it was horrible how I left so quickly and abandoned my mother.
And I basically said to her, “Well, I didn’t leave that quickly. Yeah, I found an apartment right away and I’m leaving within a month. That sounds quickly, but for years now I’ve been asking for help and I never got it. So basically I’ve been working towards this for years.” So in my mind, it wasn’t leaving quickly.
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.”
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 were still three before him.
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.’”
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 cope with it.” And I guess that’s one of the keys; “as long as I’m able to cope with it”. No, the option is out there and it’s our health system.
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.” “We’ll send him back in an ambulance in 12 hours.” Because I did not want to be the one to make the decision. How does that work? I mean, how’s my husband going to feel when I’m saying—and how am I going feel—I’m saying I can’t look after him anymore. I’m not wearing that one. So finally, they got to—I guess all the doctors and whoever the specialists, and blablibla—got together and they decided that he could not come home. And I said, “Fine, I will accept that. But you guys, yeah, you’re making the decision. I’m not. I’m not the doctor.” I’m going to assess the guy and say he can’t come home? So, yeah. So that decision was made by the medical team.
Last week when I was—or 2 weeks ago when the decision was finally made that he had to go to long-term care—I mean, I was feeling, “Holy crow!” I was really feeling in some ways I’d let him down because I knew that’s not what he wanted to do. And I said that in an e-mail to his sister-in-law, […] my husband’s sister. And she, I guess the next day, was going to breakfast with them all, which I did not know. And she sent back this lovely e-mail from them all saying how much they appreciated what I’d done for him and how I’d looked after him, and how the kids had, and how we couldn’t possibly have done anymore for him, which made me feel good about that, because I wasn’t sure how they were going to respond to that.
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.
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 tank tops, I hid them all. Another day, I arrive and… I go to put his socks in the clothes hamper − winter pyjamas.
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, this was 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.”
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 about a couple of times a year the hospital doesn’t want to keep him; they want me to take him home. And they say to me—they use it as a threat—they say, “Well, if you can’t take care of him at home, he’ll have to go to a facility.” Last year he had C. difficile, last August, very seriously, and he was here and we had an ambulance call took him to the hospital. They wanted me to take him home. I said, “I am not taking him home,” because I said, “I’m going to call an ambulance the next time he goes to the bathroom.” And I work with homeless people. That’s what I do. I said, “I’m not exposing myself and my vulnerable clients to C. difficile; not happening.” So, they kept him and he was so sick he ended up being there for a month. But they got the social workers out, they got the whole gang up on me. And that’s what I was saying to you earlier. I mean, someone who was older than me and had less energy than me, and less knowledge, might have caved in that situation.
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.”
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.”
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.
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 appropriate equipment to treat a stroke victim.
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.
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, like at least once a month.