Most caregivers spoke openly about their future expectations or concerns, and many were living with some specific concerns for the future. For some, the future was rather negative while others said that their perception of the future had changed quite a bit or that they were living more in the moment because they couldn’t tell what the future might bring.
Preparing for future needs
Several caregivers were preparing for their care recipient’s future needs.
Well, if you’re living with somebody with a disease that you know is going to get worse, it’s really important to try and talk to people who are already at that point and get a sense of what needs you’re going to have to meet. We tried to design this place with everything in mind for the future, but it’s amazing how many things are still a problem—that if he had been where he’s at now when we were designing the place, we would have designed differently. And that was even with designing, working with an accessibility design consultant too, who brought all sorts of things into it that we wouldn’t have thought of.
So if you are making any kind of changes like moving to a different place or, or whatever, try and speak to somebody who’s in—and I think it’s incumbent on the caregiving person to do this—to speak to somebody who’s in an advanced stage and their caregiver to try and get that kind of information. Because I know my husband was eternally optimistic, and even though I could project the needs for certain things in the future when he got worse, he would say “Oh no, no we won’t need that.” Well anything I projected certainly came to be true, and there were things I didn’t project. […] It’s too bad, if you’re going to the trouble of buying a place to meet the needs, or renovating, or building, to then 10 years into it later you’re suddenly thinking, “Oh, there’s all sorts of different things we should have done differently.”
The part that’s imperfect is actually the bathroom. I realize that as [my husband] progresses I’m going to need a drive-in shower for him. I’m just not going to be able to wheel the chair, wheelchair up to the shower like I do now, and he’s able to step in and sit on the stool. It’ll be a little more—I’m actually hoping that we’re going to be moving in about 2 years.
Probably not any different than anybody else. I worry the fact that we don’t have an elevator here, so if he gets to have trouble on the steps, we may have to move—although he doesn’t have any problem with the steps at all. He just has [problems] with the freezing. That concerns me because I sure wouldn’t want to move. That’s such a big job.
Did you live here for a long time in this house?
We moved in just—he had the stroke just after we moved in. We had our stuff out at a camp and he was working out at the camp too. He was doing too much, trying to do too much.
What will happen to me?
Several caregivers worried about their own situation, and what would happen to them if ever they would need care. The Smiths have no children and are worried about having to depend on ‘the system’. They were also concerned about their freedom to make end-of-life decisions for themselves. Sheni worries about the future and their finances; currently, she is not working while caring for her husband, which has a big financial impact.
I still think, looking at that situation, that if any one of us, if we reach to that situation where we need constant help, so how we are going to manage? Our children are away, being a small place—all of our community’s case—they are not in [city in NB]. They are all away working, I mean, they are highly professional. So how they are going to look after us from that far?
What will happen to the care recipient?
Several caregivers worried about what may happen to their care recipients if something happens to them. Elaine said, “I want to survive him because that means that I’m still going to be here to look after him when he really needs it. I want to outlive him because that would be very hard for him, if I died.” Lorna has a similar concern and wonders who would look after her husband if something happens to her.
It’s like yesterday, I went out. I went to my sister-in-law to clear my head, and I had someone to care for him, well I didn’t… I fell asleep at 2:30 a.m. but at 3:30 a.m. I was wide awake and I was watching the clock. At this rate, I won’t tough it out for long.
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.
You can read more about this in When care changes over time.
Coping with worries and thoughts for the future
People approached their worries and thoughts about the future in different ways, some hopeful and some less so.
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.
The parts that I found more difficult to negotiate with were things like the constant layer of worry in my brain that I didn’t know was there. It just was, and it was constantly eating away and interrupting sleep, and all of the “what ifs”.
So, the two months I am talking about, well, we had to meet with the community workers, the occupational therapists from the three hospitals because we didn’t know in which hospital it would be done, thus repeating the process with each one. We lived it once; maybe we will live it a second time. We don’t know what the future holds for us.
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 3 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 9, he’s ready at 1, 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.
My husband, I don’t know, I don’t know what’s going to happen when he can’t even get out of bed at all. I don’t know. He’s in a lot of pain, all the time. I don’t know. I don’t know what’s going to happen. But then, I haven’t known for all these years what’s going to happen, so […] after a while, you just kind of adjust to it, and whatever’s going to happen is going to happen. Nothing I can do about it.
How do I see the future? Well, I guess as a family caregiver, for me the future is 5 minutes from now. I try not to cast a net too far ahead of me because I’ve learned in 34 years that things can change on a whim, and the idea for us in what we’re doing is maintain my mother’s current functional abilities and her quality of life.