Marlyn

audio
Age at interview
67
Age at start of caregiving activities
55

Marlyn (67 years old) lives with her husband who was diagnosed with multiple sclerosis (MS) about 20 years ago. The couple’s first child died in a car accident at age 33.Their two other grown children have moved out of the parental home. Marlyn cares for her husband, whose functioning was hardly affected by the illness at the time of diagnosis but has become much worse over the last few years.

Marlyn and her husband led such an active life that during the first 20 years of his illness, the couple did not notice anything obviously abnormal, even if the MS diagnosis had already been made. It was only after a few odd incidents in more recent years that Marlyn realized that the illness was actually starting to present itself more seriously. The illness gradually and intensely progressed to the point where they realized that they would require a wheelchair accessible place to live.

Marlyn and her husband then designed and built their new home. In an effort to not forget any details with regards to her husband’s future needs, they engaged an accessibility-design consultant. Nonetheless, eight years later and after entering a further phase of the disease, Marlyn’s husband still encounters problems with access to their home. Given this specific experience, Marlyn advises anyone who is considering moving homes to speak with people that are already in the advanced stages of the illness to obtain advice  on the design for a  new home. 

Marlyn’s husband still lives at home thanks to the excellent public homecare services he receives five times a day. The caregivers prepare him for the day, help with incontinence issues and make the necessary transfers from bed to chair and vice versa. Marlyn has a back-up system in place in case her current homecare services are unable to find a caregiver for these fixed times. But this isn’t very useful on short notice. Occasionally, at bedtime for her husband, the couple has had to find help from neighbours. Prior to the homecare services, Marlyn did most of the physical caregiving work herself until she developed back pain while trying to lift her husband. Now, two and a half years later, she is still recovering from this injury.

Marlyn is especially affected at the emotional level by her caregiving situation. She feels somewhat trapped and guilty, which leads to feelings of depression or frustration. Marlyn is also in a situation where she feels that she may be judged by outsiders for the decisions she makes. Outsiders do not always realize the negative feelings a caregiver must deal with. However, Marlyn is now learning to care better for herself in order to deal with this psychological issue. She describes the invaluable support and advice she received from her doctor, such as the idea of taking a trip every three months. This kind of professional support has helped to reduce her feeling of guilt.

Marlyn and her husband prepare as much as they can for the future by continuously adjusting their lifestyle according to the changes in their lives brought about by his illness. This is a difficult, ever changing pathway.

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Now, outsiders might look at you and judge you, and that's a very difficult position to be in—where you feel as if you should be able to do some things, but you can't, but other people might judge you and sort of say, "You're a nasty person, uncaring person making your spouse go into a care facility because you don't want to have to deal with this." And I thought that I was probably more alone in thinking the way I did until I was in this group, and everybody feels the same way. Even people who are nurses who deal with this on a daily basis in their profession, have having to clean people who had bowel incontinence problems for example, and they say the same thing.

I know most caregivers feel a lot more negative emotions than people would think. Often outsiders will look at a situation and they'll feel very sorry for the person who is ill or disabled and understandably, but they often don't see the impact on the caregiver as well. And when we took that course at the MS Society, one of the questions the […] facilitator asked was "What was the one emotion that comes to mind when you think of yourself as a caregiver?" And she was anticipating positive emotions like caring, loving, and I don't know what… those sorts of things. And to a person, everybody in the room—and there was about maybe 15 of us there— the emotions were all negative: frustration, anger, depression, whatever. They were all negative. And it surprised me that that surprised her, because she was a psychologist or a psychiatrist, I can't remember which. So it surprised me that she was expecting more things about "Oh, I'm so grateful that I can do this for my husband," or whatever. I don't know what she was expecting, but she wasn't getting it.

And that's one of the reasons that the caregiver support group is so valuable.  And if anybody who is a caregiver and isn't in a support group like, that I strongly suggest that they find one or start one. Because, if nothing else, it's just other people who understand what you're going through and you can blurt out all the negative feelings that you're having at that time—frustrations or whatever—and feel that it's going to be understood. People aren't going to just kind of say, "Well, just imagine what your husband's going through."That kind of thing, or, "Just be lucky the shoe's not on the other foot!" or whatever some of these responses might be.

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No, they didn’t explain anything like that. Of course, by the time you get to that point you’ve been doing everything. So, there wasn’t much that they had to tell me. The relationships with the caregivers themselves has been fantastic. The caregivers are really wonderful people, and with the odd exception, we have just had amazing people. I am so grateful to them because they’re not only doing things that I simply couldn’t do—couldn’t be able, couldn’t bring myself to do with him—but they are so cheerful and fun and funny, and I’m hearing laughing and jokes and all that going on in the room with them when they’re here. And they have conversations with him about sports things, what was happening in some game last night or whatever. Or they’ll be telling stories or just making jokes.

They are phenomenal. I can’t say enough good about the people that they have in the system. Every now and then you get a jerk, but by and large they are so much better than I thought they would be. And I’m just eternally grateful, not only for the system, but for the people in it.

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I mean, 2 years ago I injured my back because I was helping him. He was at the point where he could still just barely transfer out of his chair into another chair or into the car, something like that, even on and off the toilet because he was still using the toilet on his own then. And initially it was just a kind of a little help and it got to the point where it was, I was really having to try and lift him. And that’s when I injured my back. And I simply said, “I’m not doing that anymore.” Any kind of transferring is going to have to be with homecare people, and otherwise, I’m just not doing it because it’s taken 2½ years for my back to start to feel as if it’s somewhat better, not back to where it was. And it is just such a risk to caregivers because you really do keep doing things until you injure yourself.

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The doctor started telling me I had to start taking holidays myself. I couldn’t be thinking about not doing it because I felt guilty or because it was difficult. And the longer a holiday that I take, the more work and preparation and arrangements I have to set in place in order to go away. But the doctor made a point of saying “You need to get away at least every three months.” And that was good to hear because I came back and I said to my husband, “I have to get away every three months.” And he was, “Oh, that much? That often?” And I kind of thought, “Ooh”—guilty. But the fact that it had come from the doctor made me more able to say it without feeling too guilty about it. And I really came to believe that in order to survive this, and not kind of throw up my hands and say, “I can’t deal with this anymore,” I had to be able to do some of the things that I really wanted to do and wasn’t able to do with him anymore. So, I’ve started going off on some other trips—not just visiting my kids but… I went with my brother on a couple of short trips in the past couple of years down south in the winter—just to get away in the winter and just to try and do something that felt normal.

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And [homecare is] an absolute Godsend. If you have to speak to any caregivers who do not have homecare and have to look after things like, like dealing with incontinence issues, or bathing their spouse, or even trying to get them in and out of things. I mean, 2 years ago I injured my back because I was helping him. He was at the point where he could still just barely transfer out of his chair into another chair or into the car, something like that, even on and off the toilet because he was still using the toilet on his own then. And initially it was just a kind of a little help and it got to the point where it was, I was really having to try and lift him and that's when I injured my back. And I simply said "I'm not doing that anymore." Any kind of transferring is going to have to be with homecare people, and otherwise, I'm just not doing it because it's taken 2 ½ years for my back to start to feel as if it's somewhat better, not back to where it was. And it is just such a risk to caregivers because you really do keep doing things until you injure yourself. 

I remember one of the last times I tried to help him was he needed to get off the toilet and he just couldn't, he couldn't stand. And so, I was helping as usual, but at one point he said "I keep telling you! I keep telling you! You've got to lift me." Well he's 185-190 lbs. How am I supposed to lift a 185-190 lb man who can't help, right? You're trying to lift that kind of dead weight, and it never crossed his mind that this was an unreasonable request to make.

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There the kind of things that you often don't think of until somebody says something, because you—actually this is a point I didn't make, and it's perhaps one of the ways in which I have been most involved with the caregiving, and that is problem-solving. And that's a big issue, because the person needing the care is constantly running into problems trying to do something. And so, you're always sort of racking your brain trying to figure out, well how else can we make this work? What can we do, how can we adapt this, what could I buy? What different kind of water bottle might he be able to use? Because he has no use of one arm and he can only barely with a lot of effort force a bottle or something into a hand that just kind of sits there. And the other hand is losing a lot of strength, so there are a lot of things that he can't do. And opening jars and just some of the water bottles that you buy all over the place—the reusable water bottles—have systems of opening or shutting them that may be fine for the average person, but for somebody with very little use of their hands and strength, it just doesn't work. And so you're constantly out there looking at what's out there trying to see if there's something that looks like it might fit the bill. 

So then I passed that on to other people. So there's a lot of that kind of "How do you, what do you do, how do you do this?" You just sort of suddenly get flummoxed; you hit a certain point where the logical thing that everybody always does in that circumstance isn't working, and you kind of hit a wall. You can't figure out how you're going to do it. And then you start asking people, and some people often came up with it before. But that's one of the things that I have done a lot of, is just trying to do the problem-solving and trying to come up with things. When he used to be in a scooter, he would have a bag hanging from the front handlebars of the scooter and he could keep all sorts of things in it. When he progressed to a wheelchair, there's nothing in front to hang anything from. There's something in the back but he can't reach it, and you can put a couple of things on the side, but he can't really put one on one side because the joystick moves in and out. And the other side, you can only put so much because he's still got to get through doorways and things, and if you start putting too much everything gets caught.
So I'm constantly trying to come up with ways of putting something that he can attach to the wheelchair somehow, somewhere, still be able to reach it and use it, but it not get caught in things. So, it's that kind of thing that you spend a lot of time just trying to figure out how to do.

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I know most caregivers feel a lot more negative emotions than people would think. Often outsiders will look at a situation and they’ll feel very sorry for the person who is ill or disabled, and understandably, but they often don’t see the impact on the caregiver as well. And when we took that course at the MS Society, one of the questions the […] facilitator asked was “What was the one emotion that comes to mind when you think of yourself as a caregiver?” And she was anticipating positive emotions like caring, loving, and I don’t know what—those sorts of things. And to a person, everybody in the room, and there was about maybe 15 of us there, the emotions were all negative: frustration, anger, depression, whatever. They were all negative. And it surprised me that that surprised her, because she was a psychologist or a psychiatrist, I can’t remember which. So it surprised me that she was expecting more things about “Oh, I’m so grateful that I can do this for my husband” or whatever. I don’t know what she was expecting, but she wasn’t getting it.

And that’s one of the reasons that the caregiver support group is so valuable. And if anybody who is a caregiver and isn’t in a support group like that, I strongly suggest that they find one or start one. Because if nothing else, it’s just other people who understand what you’re going through and you can blurt out all the negative feelings that you’re having at that time, frustrations or whatever, and feel that it’s going to be understood. People aren’t going to just kind of say, “Well just imagine what your husband’s going through, “or that kind of thing, or “Just be lucky the shoe’s not on the other foot!” or whatever some of these responses might be.

Text transcripts

The string that hangs on the door handles—I don’t know if you noticed those—that’s so that [my husband] with—sorry I said the name, you’ll have to black that out—that’s so that my husband coming in in a wheelchair, because he can’t reach back and grab the door handle once the wheelchair’s all the way clear of the door, he’s got to be able to grab that string and kind of pull it with him so that he can pull the door shut behind him. So it’s things like that that either I have to come up with or somebody else has previously figured out and you find out through various support groups. And my… more

The string that hangs on the door handles—I don’t know if you noticed those—that’s so that [my husband] with—sorry I said the name, you’ll have to black that out—that’s so that my husband coming in a wheelchair, because he can’t reach back and grab the door handle once the wheelchair’s all the way clear of the door, he’s got to be able to grab that string and kind of pull it with him so that he can pull the door shut behind him. So it’s things like that that either I have to come up with or somebody else has previously figured out and you find out through various support groups. And my… more

I think that’s one of the biggest problems, because the person you’re caring for wants to remain independent as long as possible, and in their mind, independence includes the spouse helping them, right. They’re still independent even though the spouse might be almost lifting them. Having to move to somebody else coming in to do that is a big leap for them. And so, they keep wanting you to help them do all these things, and they seem to lose the ability to think about the other person. And this is something that I think is really important for anybody who isn’t a caregiver—or even people… more

No, the only problem we have with homecare is when somebody can’t come, like either they’re suddenly sick or they’re on holidays, and somebody else has been scheduled in their place. Sometimes, the coordinators that are supposed to be scheduling people don’t get somebody scheduled in their place, so nobody shows up. Or sometimes you’ll get a call last minute saying “We don’t have anybody to come,” and sometimes that’s not a big problem if it means [my husband] has to miss his nap in the afternoon, that’s not the end of the world. But when they phone you at 9 at night to say “we don’t have… more

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… more