Donovan

Donovan
Age at interview
77
Age at start of caregiving activities
60

Donovan (77 years old) is married and has no children.  He cares for his wife (67 years old) who needs 24/7 care. Donovan worked as a human resources manager in a large organization and retired in 1990. Donovan’s wife was diagnosed with multiple sclerosis (MS) in 1981 when she was 37 years old. Donovan became more actively involved in her caregiving in 1994 when his wife started using a wheelchair. Currently she needs 24/7 physical care, which is provided by Donovan and two live-in caregivers.

Donovan has been taking care of his wife for 17 years. Donovan feels that his wife is a patient and kind person who never complains. She was diagnosed with MS when she was 37 years old. She continued working until she was 44 years old and had to start using a wheelchair about 6 years later. At that point Donovan became her caregiver. Her disease progressed over time, and, at the moment, she is only able to move her right hand and her head. A few years after she started using her wheelchair, they decided to move away from the small island where they had lived since she left work, and Donovan started his retirement.

Once he started providing 24/7 care for her, he realized that he was under a lot of stress and was running out of steam. This is when they first hired someone to help with the physical care for 3 days/week. Later they hired a person who helped them 5 days/week, and when she left, they had to make a choice between a care facility or live-in caregivers. They opted for the latter, as they would not be able to choose the care facility themselves and this was hard for Donovan to accept. They have had help from two live-in caregivers for the last year; he had hoped that these would become more like family given that other caregivers had described that type of development. However, the two live-in caregivers complete their duties in the house and then retreat to their own rooms with their computer and phones. He struggles to find the right balance in managing and living with the caregivers, and finds it difficult to supervise them even though he was once a human resources manager for a big department in his professional life.

Donovan is trying to deal with the isolation, depression, and lack of energy that result from his caregiving activities. He feels a strong need to be in contact with other people and to be free to leave the house. He has made several attempts to improve his situation: finding help with counsellors; visiting support groups; arranging the live-in caregivers; going to fitness; taking a holiday—and he still searches for other social events that can take him out of the isolation and depression. However he has not yet felt that these things have really helped him. He knows that he needs private counselling, as his depression and tiredness are worsening, but he is not able to afford this.

He describes how he is nearing the end of his life and how he feels restless and frustrated by his situation. He speaks very openly and honestly about the fact that thoughts of killing himself cross his mind, just out of his desire to get out of the situation, even though he knows he would never do it.

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One main thing is—I’ve been hearing it for years—you’ve got to start as early as you can in looking after yourself, because if you don’t look after yourself then you’re not going to be very good at looking after somebody else. That’s a cliché. It really is a cliché. And other people that I know in this one support group, they are able to look after themselves. They’re more independent, they’re more assertive—much more assertive—and they do things on their own, which I have great deal difficulty doing as I mentioned. So anyway, the key is you’ve got to look after yourself; make sure that you don’t let yourself get totally swamped because if you let yourself get totally swamped and stressed out, then you are not going to be able to do a very good job of looking after your person—the care receiver.

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I’m not getting out and able to do things socially on my own, which I know I need to do, but I don’t seem to be able to work it in. I just found out about this one seniors’ group about 3-4 months ago, and I haven’t been able to do a thing about it. I’m just too busy all the time. There is so much to do to manage the situation, to manage everything: I have to look after everything financially; I have to look after the maintenance of the house, the yard—we have a huge yard. It’s just constant. Absolutely constant. I don’t have any major health problems myself. I don’t have a heart problem or lung problem or anything. I’m just getting older and getting worn out. 

I started going to the gym last June. I had been hiking a lot before then, but then that kind of petered out. So I thought, “Okay, I better start going to the gym”. So I’ve been going 3 times/week—not for body building, just to try and maintain some conditioning so that I can feel better. Some people say, “Well, maybe you’re exercising too much when you go,” because I’m tired all the time. But I was tired all the time before I started going to the gym. So that’s not the answer either. Anyway, I spend about 2 ½ hours at the gym working on different machines and I’ve gotten to know some of the people there. So, I can talk or visit a bit—visit ‘a bit’. But, […] I feel very strongly inside of me that I desperately need socializing and I’m not getting it because we’re isolated at home—very isolated.

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Next, this coming fall, the 2 women that we have will be leaving, so we have to start the process again to get replacements. And if you deal through an agency and you get somebody from the Philippines, for example that’s where these women are from, it can take 6 months and it’s a frustrating process and expensive. $600 placement fees for each one, plus we end up having to pay their airfares—a lot of money involved. Like I said before, if it wasn’t for the CSIL program though we wouldn’t be still able to live the way we are and where we are. If it wasn’t for the CSIL program, she would be into a facility, and… we sell the house and I move into an apartment. I’ve got a lot of difficulty with this, a lot of difficulty.

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Way back when I worked, I was supervising most of my work life and I did well. I could supervise. And I have difficulty now supervising the 2 workers that we’ve got. I just find it quite difficult. Part of the reason is because we are with them all the time. When you are at work, you are at work and you’re dealing with people for 8 hours a day or whatever. So, you don’t… when you leave, you go home you, they’re gone and they’re employees. But this situation is very different because they are with us. Now, they don’t interfere—excuse me—they are really good in one big sense; they don’t hang around us if there’s nothing for them to do on the house or the cleaning or the cooking. They go to the bedroom and they just stay in there with their telephones and their laptops and whatever; they don’t bug us. And we sometimes wish that they would participate a bit in the house. They are not interested in us, it doesn’t seem like. They never ask us questions about us—well, hardly ever. So, we were kind of led to believe before we got these people that often these women that come over from the Philippines end up almost like a family member. Well it didn’t happen and it’s not happening with us anyway. Maybe it’s our personalities or my personality that prevents it, I don’t know. But it’s hard to supervise and to ask them to do something differently. Where do you draw the line? I’m an employer; they’re an employee. It’s hard to straddle that line. I’m finding it very difficult. So anyway, the overall effect has been—the stress on me is, I can feel it most of the time subconsciously. I’m never away from it.

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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. It’s very inadequate when it comes to my age bracket, and people in my age bracket that get severe illnesses or disabilities. I know the governments are treading a line. There’s only so much money and we can’t do anything about it; we have to live with it. But the situation for this group of people, as far as I’m concerned, is quite poor, quite poor.

I don’t think any government in Canada, any provincial government, is any better than what we’ve got here. I can’t say that unequivocally simply because I haven’t experienced it in other jurisdictions. It’s just here, like the support for handicapped seniors is poor. There aren’t enough facilities. As a result they are crowded, they are inadequately staffed. There are facilities that are privately run by corporations, and they are great. I saw a few of those, maybe three. They are just great places, but you have to be able to put out about $8,000/month to afford them and we can’t do that. So we don’t have any options; we are stuck with what the government can offer, and it’s not much of an option. It’s a hell of an option quite frankly. It’s the shits of an option—you can delete that later, or leave it in as you wish. That’s the way I feel about it. […] It’s a very bad situation to end up being in. It really is, and there’s nothing can be done about it; we have to accept it. 

So we found out that, finally, that we could qualify for the CSIL Program. And then we knew that we had that other option, so we chose that option. And there are all kinds of things involved in that decision; there were positives and negatives for both choices. One of the positives for a facility for her was that she would be able to socialize with people in the facility, whereas where we are, we’re living in a subdivision way out there near the airport and to do anything you have to drive. There’s nothing you can walk to well—she can’t walk anyway—and the subdivision is on a hill. So, there’s that advantage of being in a facility where she would have much more access to people and social activities; playing bridge, whatever, that sort of thing. But we chose to stay in our house because the house, over the years, has been set up for wheelchair use, and it works fine. It works really nice. It’s a nice house, we’re comfortable there. We’ve made lots of changes over time and we enjoy the area with these drawbacks. Neither of the caregivers drives. The other two previous people that we had could drive, and so that was good because they could take [my wife] to appointments. They could go for groceries, but neither of the two that we have now, the live-ins, can drive. So I’m it. I’m the chauffeur for everything, and it’s very tiring.

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Then I found out about a support group that meets once a month in [a town in BC], and that is sponsored by the Caregivers Network Society here. So I started attending that. That’s during the day, once a month. And I didn’t find it very satisfying because nobody else in the group of about 10 people, were in the same situation that I am and have been providing total physical care 24/7. The other people there were people who maybe had their mother staying with them in a basement suite or something like that, and just providing general supervision and assistance with whatever. So, none of the people there were in my situation, so I couldn’t relate to them and they couldn’t relate to me. So after quite a while, I just thought this group is not… I didn’t feel it was helping me very much. So I stopped going, and over the years I’ve had a bit more counselling.

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I guess I think about that from time to time. I know that, from here on, it’s not going to get any better for either one of us. Things are just going to gradually, steadily go downhill for both of us. My health is not going stay good forever, I know that. I mean, if I were to have a heart attack and die, then a whole series of things would have to kick into gear for her… Yeah, I fear for things, and sometimes I get so fed up with the way things are that I thought about the possibility of killing myself. I don’t hesitate to talk about that, I’ve done it in recently in one of the support groups. I know I won’t, but it crosses my mind because of the need to get out of the situation. I’m just not enjoying life, the way things are. I’m not getting much enjoyment out of life—did I just say that? Maybe I changed it slightly. Yeah, I’m not getting any, any enjoyment really out of life. And I’m looking for, I really strongly need socializing. But, then I stop and think “Well, if I do end up getting some socializing, is that going to, is that going to solve anything in the way I’m functioning and feeling?”

But this disease has destroyed, in so many respects, our marriage. It has destroyed it. And there’s nothing that can be done about it, nothing; totally destroyed what we had hoped would be the latter part of our lives, and I’m, as you know from my information, I’m 77 next week and I can count the, count down the years that I’ve got left to live and I feel that I’m missing out, really missing out on this latter part of my life, really missing out. So that bothers me. I don’t know if you expected anybody in my situation to talk about that sort of thing, I’m not sure if this is something new that you might be hearing from a caregiver, is it?

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In 1981 approximately, she was diagnosed with MS. And by ‘88 she had to leave work. The work that she was doing had far too much stress for anybody, and the stress exacerbated her MS and probably brought it on more quickly than it would have otherwise come along. So, she had to leave work in ‘88 and I retired in 1990. We moved out to the coast from [a city in AB] in 1990. We had a house built for ourselves on [an] island, which is one of the […] islands. I don’t know if you know the geography around here. And we lived there for 8 years, and in 1994 her disease progressed to the point where she had to start using a wheelchair. She could still transfer herself from the wheelchair to chairs and so on, but because of fears of falling she had to start using a wheelchair. So in that sense, since 1994 I started being a caregiver.

No, you see this has been such a gradual process for me, from day one starting in before 1994, because we knew she had it. But up until about 1994, she was able to deal with things. She could walk, she could cook, she could function. But then, when it got to the point with a wheelchair that she was unsteady on her feet—getting very unsteady on her feet—and I was very afraid that she was going fall and hit her head on something and so, I had to convince her to start using a wheelchair. And you can’t push people to use a wheelchair until they are ready. They have to be ready “up here” emotionally to accept that that’s where they’re at; that’s where it’s at.