Claire

Claire
Age at interview
37
Age at start of caregiving activities
30

Claire is 37 years old and lives with her husband who is 39 years old and has duchenne muscular dystrophy. She is his primary caregiver although they have help from several paid caregivers during the day. Claire works full-time as a social worker.

Claire and her husband met online in 2004 and married two years later. At the time they met, he had been in a power wheelchair since he was 11 years old and required 24/7 help for all activities of daily living, although he continues to be cognitively independent.

Claire explains that her experience as a caregiver is somewhat different from others’ in that she entered the relationship and fell in love when her husband was already using a wheelchair. Becoming a caregiver didn’t just ‘happen’ to her unexpectedly as per the usual scenario – she chose this relationship and all of its implications from the start. Given that he had several caregivers already in his life, Claire tried to focus more on the relationship, although she does assume several caregiving responsibilities in part to protect their privacy at home (they have chosen not to have live-in caregivers).

With a daily routine that involves several caregivers at different times of day, Claire is able to maintain her job outside the home; her husband also goes to work in the afternoons with the support of a caregiver, and they return home about the same time. Claire’s husband needs assistance to get in and out of bed, for feeding and all personal care, and to manage transportation. He uses a ventilator at night. Claire speaks about the challenge of balancing the need for privacy and the need for help; some activities such as plane travel have finally proven too difficult and dangerous for the effort. She is, however, quick to mention the enormous privilege her situation has provided her in terms of appreciating the world through a disabled person’s eyes, and as a couple with a disabled partner. She identifies inaccessibility as their biggest challenge – as an example, they can only get into about 10% of their friends’ homes, but also mentions their van as their most valued possession for freedom!

Claire and her husband’s experiences with the formal healthcare system have been relatively positive and Claire feels that her role is acknowledged by healthcare professionals. They are in a somewhat unique position to educate physicians about the progress of this medical condition and his needs over time as he has already lived much longer than originally expected. This has been attributed in part to the ventilation therapy he uses as part of his usual regimen.

Claire’s advice to friends and family includes the need to think about pragmatic ways to include them as partners in simple events such as dinner parties, finding a few hours here and there to come over to help out or visit, and not being afraid to ask how they can help.

Her advice to policy makers would be to consider accessibility issues more thoroughly.

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And actually, I joke about that, but it’s true. Actually, one of Luke’s family members just bought an accessible home and she was just about to move in in about a month. And that was one of the biggest thrills of our life because there’s only two other family members’ home out of all of our extended family that we can get into. So, we’re just excited to be able to go have shared experiences and spend time with them. So, we joke about that because we know most people can’t switch homes, but actually it’s a big deal to have an accessible home or to find a way—to try and find a way. And I think too, when we can’t come to certain things, trying to find ways to make up for it by having a meal out, or I often say—no one has taken me up on this, but—our friends often say, “Oh, we wish we could have you over for dinner,” because that’s one thing I miss is I never get to go to someone else’s house for dinner and have them make us dinner, right. And I would like to do that, and so I tell them make dinner and bring it here, and that’ll be your way of having us over for dinner. But that hasn’t happened. So, if any of them watch this, it’s a hint taken.

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I think it’s just that thing, I think which is probably relatively common, is that I think anyone with a disability—well any of us, in general have really unique needs when it comes to our healthcare, right. And Luke in particular has very unique needs because he’s a pioneer. So, I think it’s just reminding them that they may know a lot about a particular disability or illness, but I know a lot about Luke, and Luke knows a lot about Luke. So listening to my particular perspective on what’s comfortable, or what’s troublesome, or what’s different, or that… giving the opportunity for us to explain, or to explain the impacts of things. Like, for example today’s a good example. Luke’s armrest wasn’t working properly on his wheelchair and so he went back to the place today that had kind of set it up for him. And his armrest is important not just to hold his arm up, but because his joy stick is connected to his armrest, and his arm needs to be positioned in a certain way for his joy stick to be able to work, and his joy stick needs to move out of the way in a very certain way so that he can use his mouse pad for his computer. And his armrest size is very important to fit through doorways and get around corners in our apartment building, right. There’s so much more than just that armrest.

And so, they fixed it today, but they fixed it differently and put new pieces of equipment on it. And so today we were talking about—like, Luke did manage to get into the bedroom, but usually the caregivers move his wheelchair out of the bedroom to charge it up at night, and Luke’s now saying that’s not going to be possible because it’s such a tight fit that there’s no way they could do it without really wrecking the door. And now he’s wondering if he can get around a particular corner he needs to to get into the van, and when I just set him up on the computer, it was difficult for him to kind of get set up on the mouse pad because of now the different way the armrest works.

So, I think everyone looks at their unique kind of piece, whether it be the respirologist, the cardiologist, the GP, or the wheelchair equipment people or OT, and that’s where it’s helpful to talk to Luke and I about, before changing something or suggesting a treatment plan, about so much we’ve learned. You try a new position and then it creates a new problem. Or you try a new treatment and then it’s going to create another problem. And often Luke and I are much better able to anticipate what else it might affect than those people. So, I think that would be the advice I would give—is ask the question about what else it might impact.

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Yeah, the financing of support, and being able to have outside caregivers in the home when they’re needed. And everyone needs such a different level of support, or wants such a different level of support, but there should be some flexibility in that. And some choice around whether caregivers are working and doing the majority of the care or not. Just like mothers should have the choice to be at home with their children or go to work, it’s that same kind of thing. We all have different skills, and different desires, and different ways of fulfilling ourselves, so I think flexibility and allowing caregivers to balance their own lives too. So, the support needs to be there for caregivers. Financial support for caregivers, if we decide to be the main care at home, I think, is something that is invaluable.

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When I first started being a caregiver well, I met my husband, Luke, in 2004. We met online actually, and then kind of courted each other, so to speak, back and forth in writing for quite a while before we met in person. Actually at that time—we always make a joke because at that time I had blue hair that I had done for a fundraiser, and Luke uses a power wheelchair. He has muscular dystrophy.  So we met each other easily when it was time to meet in person because he just had to look for the girl with the blue hair and I had to just look for the guy in the power chair, and we found each other right away. So, and the rest is history. We got married a couple years after that.

[…] When I was kind of anticipating this, and thinking about myself as a caregiver, which I’m happy to talk about, I think what it was first was a relationship—Luke and I’s relationship and marriage. Unlike other caregivers, it wasn’t something that kind of happened to me. It wasn’t an illness that had happened that I wasn’t expecting or what have you; Luke has had muscular dystrophy since he was born. […] He already had a lot of caregivers in his life when I met him, and that was kind of already who he was. But of course, that’s not the reason I fell in love with him. It was just one of the things he brought to the table along with all his other qualities. 

One thing I noticed right away though in myself was not wanting to be a caregiver in the relationship, but just to protect it as I had envisioned any other relationship. And I found myself saying to people when we were first together, almost explaining away, “Well, he uses a power wheelchair. He has muscular dystrophy. He has this and this and this need. But I don’t do any of that”. It’s just about us right? “He has caregivers that help him.”I was really clear I think—because of my own fears or my own stigmas that I internalized about being a caregiver or being the one depended upon—that I was careful to say that it’s not about that, which it wasn’t. But then naturally as you get into a relationship, or as I did with Luke, you kind of just start taking on different caregiving responsibilities. […] Well one, because I love him, but also because there’s a price to pay with privacy when you have caregivers in your home. So, in order to have the privacy, it’s either “do some of the caregiving yourself” or “you will never have a private moment again”.

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To us, not being able to go? I think, yeah, I think at first it’s a new experience for them too, right? Just like it was for me, it was kind of like, “Oh, okay. This is a problem.” And I think the ones that have accessible homes feel really happy and excited and lucky that they can make it work. But I think, I mean, our other friends who have inaccessible homes, some have expressed regret for sure that they can’t make it happen, but there’s also not a lot they can do. Because if it’s really inaccessible, then there’s no way to make it work, and there’s quite a few friends’ homes that, like, a ramp’s not going to cut it. And so the, it kind of is just, it kind of becomes one of those elephants in the room sometimes where they’ll start talking about an event and invite all the friends at the table, and then there’s kind of this moment where it’s like, “Oh.” And, but they’re not going cancel the event and we’re not going to be able to go. So, it just kind of, it is what it is.

So does it kind of change the social network that you’re in, do you find?

I think, I think we still would likely have the kind of friends that we have. Like, they stay friends because we connect with them in other ways. But what it changes is the shared experience and isolation, right, of them then going on to talk about that event and we don’t participate.

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Not much beautiful about getting on an airplane besides being able to get somewhere. But airplanes are not accessible and boy I wish they would be. Buses could be, but for some reason, we’re told airplanes “can’t make it happen”. So if you use a power wheelchair and you can’t independently transfer out of your wheelchair, then the experience of trying to travel would be weeks of preparation ahead of time. And actually having specialized equipment made so that Luke had something sitting under his feet so his feet weren’t hanging, something to keep, hold his head up in the seat in the airplane. And when you have equipment that Luke’s life depends on like ventilation equipment and that kind of thing, packing becomes a whole new journey. Because there’s many things that you really can’t forget, right? And I think that’s part of my learning and my perspective again. I mean, I used to complain that “Oh, I forgot my bathing suit,” if I went on a trip. And now when I hear people complain I just think, “Oh my God. If you can buy it when you get there and it’s not going to mean life or death, it’s really okay.”

So the airlines are not—or I guess they’re used to having people with disabilities fly—but our experience is that it’s always with a bit of a sigh, because it’s a lot of work for them to…and so Luke and I actually joke—since we’ve flown a few times in the last few years—if we’re just going out to pick up a friend who’s flying into town or whatever, we always joke that we’re going to just drive by the ticket counters for the airlines just to scare them a little bit.

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I’m not a napper, so I don’t really find ways to make up sleep necessarily. But what we do [is]—Luke and I are good at strategizing with one another about if the plate’s getting too full—what else can we take off the plate? Because the caregiving is not necessarily going to decrease or get taken off the plate, right? You’ve got to find other things. […] Sleep’s good right now, but a couple of weeks ago it wasn’t. So, we were kind of doing that “Okay, so what can we do?”
[…] Every evening when I come home from work I help Luke eat dinner. So, I said to him, “You know, what would make a difference is if I knew just one day when I didn’t come home from work that you’d already eaten dinner and I can just sit and eat in my own time and visit with you and watch TV and just relax,” right, which we’d never done before because I enjoy eating dinner with Luke. It’s fine, but it just made a difference somehow that this little thing gave me a little bit of rest where I can’t normally have it. 

Little things. We came up with a brilliant idea a couple of weeks ago: getting our groceries delivered that week. We both really hate grocery shopping. So, we thought, “Oh, our whole one weekend day seems to just get taken up,” the whole afternoon by preparing for grocery shopping, going out grocery shopping, coming home hauling it all upstairs, right? We did that the last couple of weeks and then it freed up more time for just rest and relaxation and fun on the weekend. And that made a really big difference. It was really noticeable to both of us. So, I think it’s about being creative and finding those little spaces where you can find those moments.