Most people we interviewed described changes in their care recipient’s health over time. Few caregivers saw any improvement or stability in their care recipient’s condition. In general, the care recipients’ conditions deteriorated over time. Many caregivers described having to progressively make adjustments according to their care recipient’s changing needs.
Changing needs and capacities of the care recipient
Val said, “As Dave progressed and got sicker, he couldn’t do anything by himself; he was totally paralysed. I felt I needed more hours.” Elaine noticed her husband’s deterioration from illness as well: “Of course there’s changes and over the years. I have to do more and more of real caregiving, which I’m in now. But again, I’m very fortunate because he’s a positive man and so grateful.”
Caregivers sometimes noticed their loved one was getting worse because they would fall more often. Christine said, “It’s progressive. In the last two years, she fell at least six times in the house and hit her head at least four times. And that hasn’t helped her condition. She’s starting to lose her memory a little, and she was not able to walk at all up and down the steps.” Joanne said, “She’ll do things that aren’t safe, which drives me crazy.”
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.
With the incontinence again, it was really more of a trial and error thing for us to be able to cope at home. I could certainly see there were certain moments along the way that it probably would have been a good time to reconsider everything we were doing had we not had that resilience. But we did it.
Several care recipients were mentally or cognitively affected by their illness. Sometimes this meant that their needs changed as well. Matsonia and Christiane both noticed that their husbands developed dementia as an effect of the Parkinson's disease. This was a significant moment, because they were no longer able to leave their husbands alone. Christiane said, "Then complications arose because the dementia set in. I could not leave him alone at all because he was smoking."
Another reason, another too, I remember when we were still working back at [a harbour in BC] hen he was on Domperidone and Comtan and Mirapex he didn’t get good sleeps either. He would dream in Technicolor. His arms would be flailing all over. I would end up getting socked across the jaw and all kinds of crazy things.
If you wish to read more about behavioural changes and the impact it had on the caregivers, you can visit page Effects of the care recipients' behaviour .
Losses over time
Several caregivers describe the physical deterioration of the care recipient over time. Shayna said, "He had the kind of MS that progressed steadily but slowly. And so, over the 25 years he went from using a cane, to using crutches, to being in a wheelchair." Several caregivers described how they had to deal with gradual losses over time instead of experiencing a single loss. For some caregivers, it was hard to predict what would happen next. Christiane, for example said, "You lose a bit, then a bit more, then a little bit more and more. He gets worse."
No, once he’s in bed that’s it. I give him all his medicine when he goes to bed, and that’s it. It’s just in the morning getting up. Like, he gets up, you have to make sure he gets into his wheelchair okay. He’s getting really unstable there. I’m worried about that. He’s barely making it into his chair now. It’s really rough. And he’s really stubborn, so he’s going do that; he knows once that’s up, that’s his life for him because he doesn’t want to live after that. So, he’s really fighting it. So yeah, somebody has to make sure that he gets in there, gets in the bathroom, gets on the toilet and doesn’t fall. And then it takes, after that, it takes him about three hours every morning to get up and go to the washroom, and then wash, and then get back to his bed and put his clothes on and get up.
Like it’s, I mean, if he gets up at nine, he’s ready at one, right. That’s how long it takes him every day just to get your basic things done, right. He’s been that way for a long time, but it’s getting worse because he’s getting weaker and he’s… So, that I don’t know. I have to look at that. I’m kind of avoiding it, kind of thing. I don’t know. Because they, the thing is, with what he had and everything − they all said, “Oh, he’ll only live 15 years,” and he’s lived 23 years, right. So, I knew he was going to start getting weaker and everything, but I’m hoping. I don’t want him to go into a home.
For many caregivers, it is difficult to watch the care recipient lose their physical and/or mental capacities. Some caregivers described how the care recipient fought against the symptoms of their illness, and describe how difficult it is to see their loved one suffer. Fernanda said, "It's tough to watch the person you love with all your heart, and you'd do anything for, being in pain 24/7."
Sometimes it came to a point where the caregivers decided that they could no longer take care of their care recipient at home (for more, please see Hospitals and Facilities).
Several caregivers spoke about side effects from medications. They tried to respond to these problems as fast as they could, sometimes changing medication in order to prevent certain effects. It is recommended to always check with the health care professionals before making any changes in medication.
For example, Matsonia's husband's symptoms of dementia became much worse when he had a bladder infection. So, she tried to find a way to detect a bladder infection on her own, so he could be treated sooner: "So, I went to about three different pharmacies and finally a pharmacy helped. A pharmacist helped me out and he researched, and he got these little sticks." Now she is able to detect his infections and get treatment much sooner.
Another drug he took for a few years was called Domperidone, and the reason why our neurologist in [a university hospital] put him on Domperidone was, he said, it would help constipation. Well it never really worked. I didn’t realize, I wasn’t told at the time that it’s supposed to help nausea. I didn’t learn that until I started networking more.
But anyway, after the six weeks or so, we came home and I think when I came to [a city in Maritimes] I was feeling a bit better because my doctor was here, and if [the] need arise, I can take him to the hospital. There we were completely cut off. So slowly, he was recovering and other thing [that] I have seen [is] they give you more medication. He started like blood pressure medications—he was taking [medications], but the doses were kind of a small dose. And then he just started the cholesterol level to reduce, though he never had high cholesterol. And then the muscle pain started, and we didn’t know whether this muscle pain is from the surgery or it’s from the medicine. So, then I start reading all the literature of what the medication he was taking, and […] they say that well this medicine can cause –Lipitor—could cause muscle pain. So then I consulted with my doctor friend: I say, “Well can I stop it?” because we don’t know what to do, whether it’s okay to stop medication or not. So he said, “Yes sure you can, because he doesn’t have high cholesterol. So, you can stop for it and see the effect.” So, we stopped and his muscle pains were gone, but he suffered for almost a month, and that when you get the muscle pain it reminds you [of] the heart attack situation. So, you feel kind of frightened again, scared at what is coming. I hope it’s not repeating that stuff. But finally […] he’s still not taking that medication for the cholesterol level. And I think within—I would say it took six months—where because he could not drive and could not do even other things. But slowly, I mean now he’s okay and we have no problem.
Lillian: Actually that’s a really important point, being on the same team. That’s really hard when you have somebody who does not speak and who does not communicate well with you. We’ve had a quite a few. This is actually a fairly important point.
Effects on caregiver's life and health
There is a separate topic page that describes how the caregiving has affected the caregivers' lives. Please visit the section Impact on the Caregiver if you would like to read more about this.
The care recipient of six of the people we interviewed had passed away. Several other caregivers spoke about end-of-life issues that affected them.
That’s always a bit tough, and that’s another thing we don’t learn anymore. I know that my mom took care of her mom—my grandmother died at home. And in those days—and she’s seen a lot of people dying in those days—and it was something that was part of life. Now it’s not, we don’t want to talk about it; we hide it. If you go to a funeral parlour you don’t see, you don’t know anything anymore.
So in September things were starting to get worse with his leg. It went from a simple quarter-shaped bruise and by the end it had enveloped his whole leg. I’ve never seen anything so fast like that.
Anyway, dad had four clots. I think if he was intubated, trached, he probably would have lived, but what life would that have been for my dad. He couldn’t talk, and I don’t think my dad would have wanted it. So the night, he did a congested cough, and nurses know that there’s a death cough and it’s really deep down, but you really can’t suction it at all.
Several caregivers spoke about how the caregiving experience seemed to stay with them after their loved one had passed away. Shayna said, "It comes from 25 years of caregiving, my body is always on. I cannot—my husband is gone seven years—I cannot shut off the phone at night. I always have to be available." Kai said, "I keep thinking back, like, I'm still looking after dad: 'Oh man, I forgot to turn on the dialysis machine!' Once or twice I'll catch myself doing that."
Some caregivers spoke about the feeling of relief they felt once the care recipient passed away. Shayna said, "I think if you're a long-term caregiver when your spouse passes away, the first thing you will feel is relief. And then, you'll feel guilty for the rest of your life for that relief that you felt."
I had a sense of relief when my husband passed away. It was just a huge relief. There was a band of tightness that was on my chest, and when I woke up that next morning—I actually didn’t sleep that night—but when I did wake up sometime during that day, that band that was around my chest, it was gone. My son said the same thing. He’s very close to his father and he said, “You know what?