Age at interview
Age at start of caregiving activities

Val is 58 years old and has two grown children. She took care of her husband for six years, until he recently passed away. During her caregiving years Val continued to work part-time as a medical transcriptionist. Val’s husband, Dave, was 54 years old when he was diagnosed with motor neuron disease (ALS); he needed increasingly more care during the six years of his illness.  

Val’s caregiving role started when her husband began to have trouble breathing. The symptoms were so severe that the only way he could sleep was to sit at the kitchen table and try to breathe. Yet the specialists were unable to detect the origin of his severe symptoms. Six months after the onset of the breathing problems, Dave’s aunt warned Val that her husband was dying and that her best possible option was to go to a Mayo clinic. Within six days, Val had booked an appointment, seen a physician, and had a diagnosis.

Val and her husband lived in a rural area half an hour out of town. Dave received homecare provided by professional health services personnel every other morning as well as one day a week in order to provide some respite for Val. Val felt that the care was excellent and the staff seemed more like their own family than anything else. Nevertheless, when the illness progressed, the couple realized that they needed to reduce the time spent working so they moved to a condo closer to the city.

Although Val had been promised similar health care services in their new location, Dave only received homecare for 15 minutes a day which was certainly not enough. Desperate for more support, Val spent a whole night at her kitchen table writing and sending three e-mails: to the minister of Health, a member of parliament, and a parliamentary healthcare critic. The next morning Val and her husband could not believe what was happening to them: there were seven vehicles in their driveway with six nurses from different care organizations. The letters seemed to have had an impact! Once Dave’s illness had progressed to the point that he was fully paralysed, Val decided that she needed to write some more letters to request overnight help. With her skills as an advocate, she managed to receive overnight staff several days a week.

Val continued to stand by her husband’s side to help him through his difficult illness. Even though Dave was severely ill, he never fully accepted his condition and was in constant denial, making the situation more challenging for Val. Over her entire time as a caregiver, Val had several moments in which she considered suicide. She often felt depressed, was admitted to the psychiatry unit with stress related to her caregiving role and she gained 60 pounds.

She would have really appreciated information about what to expect when the moment came for her husband to die; this was a constant worry for her. Dave passed away unexpectedly and peacefully, the way he wanted it to happen, on Father’s Day. The morning after Dave passed away, Val and her son woke up feeling that a big load had been removed from their shoulders. A healing process then started with Val taking the time to sleep and recover from years of stress. She began to rebuild her life after learning that she was capable of doing much more that she had ever expected.


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And my husband had various testing and things. They said the lungs were clear and there didn’t seem to be any problems so you should go to the heart specialist. It took many months to get to the heart specialist, and we finally got there. He said, “It’s not your heart; your heart is fine. There’s no problem at all.” So we really didn’t know where to go. Then that cardiologist said, “Go back to the lung doctor.”

So in the meantime, my husband is getting weaker and weaker. He stopped eating. All he could do was try to breathe. That’s all he could do. That’s all he would want to do. And he just would hang his head down and try to sleep from sitting up. And finally, an aunt of Dave’s hadn’t seen him for a while, she came over and saw him and she said to me, “Val he’s dying. There’s something really, really wrong and he’s dying. You need to go and see a doctor and you need to go quickly, and you need to go to the [clinic].” And I called them [in] June 2006.  They said you’d have to wait a while for an appointment, which was in 4 days. And within 2 days we had a diagnosis. Dave had seen a neurologist, he’d gone for a sleep study; he’d had continuous Bi-Pap overnight. He slept for the first night. He woke up in the morning and he was totally a different man. He was very, very hungry and we went home with that diagnosis, a prescription for a Bi-Pap, and we were told to give it to the Manitoba government and we did. They were very quick in getting us the Bi-Pap machine, and from then on, Dave did not have the breathing issues that he had; he could breathe, he could sleep. He wasn’t on it 24 hours a day, but at the end of his journey he passed away on Father’s Day June the 17th 2012 and he was on continuous Bi-Pap 24 hours, 24/7.

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Hopefully to support other caregivers that know…they may look and try to find out “are my feelings normal?” There were some days where I would like to put a pillow over my husband’s head and just make him be quiet. And yeah, there’s days like that. There’s also days filled with joy, and there are the days that you want to go in the car with the garage closed and you want to start your car and you want to get it over with. But there is a big struggle to get through those days, and when you do get through them, there is a little bit of light at the end of the tunnel. It’s not always work every day; there’s joy in caregiving.

I went to ALS group support meetings and there was one lady in particular—she was maybe 10 years younger than I was—and she said, “I’m going to kill him. If he doesn’t die on his own, I’m going to kill him.” And I thought, “Right on. That’s exactly how I’m feeling.” Today, it’s exactly the same. And when you go to the support meetings you get to know how other people deal with it. Some caregivers are, or relationships are—like we had 2 sisters where they’d go, “You’re an angel. You take care of me all the time and you’re just an angel,” and then the next person would say, “Well, he doesn’t do anything all day anyway.” They’re just a great variety of people that just, just think all differently, and you find yourself you’re perfectly normal in the weird things that you think and do.

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It would be the caregiving. It would be more to do with how my husband, the patient, reacts. To deal with people in denial, how to deal with aggressive behaviour—they’re not mad at you they’re just mad—anger issues, sometimes you don’t always know what they are. When someone snaps at you, you just say, “Don’t snap at me!” But you think, “Okay, so you’re angry. What are you angry at?” And of course I know but, “Let’s talk about it.” Or how do you get someone to talk? And then sometimes when he doesn’t talk, is he depressed? I don’t know. I just didn’t know how to deal with all of those things. Sometimes they were all together, sometimes they were separate.

My husband was in denial. He felt he, he treated his disease like he had a sore toe—it was nothing. He often would say to me, “Why are you tired all the time?” And he just never understood the amount of work that he took, even in the early stages. I had to dress him. I had to put his coat on. I had to get him in the car. Whenever we went anywhere, we’d have to walk really, really slow. Once he insisted on walking through the whole airport because “he was just fine”. He could barely breathe, and he could barely walk, but he insisted that that’s what he wanted to do. He didn’t want a chair, he didn’t want one of those carts, and just for him to be in denial like that it, it made more, for one thing, travelling difficult that day. And he did things that he probably shouldn’t have done like driving. We also had motorcycles. He shouldn’t have been riding his motorcycle. He couldn’t even get on it himself. I don’t think his balance was what it used to be, but still we wanted him to have the pleasure of riding it, so he did. I think he was in denial. Well, I know he was in denial for many things.

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I ended up contacting the Minister of Health, and also [name] who is the Progressive Conservative Leader Member of Parliament for [name village in MB], and also [name] who is the healthcare critic for parliament.

When those e-mails went out that morning—I took all night to write them—and when those e-mails went out that morning, Dave had seven vehicles out in front of the driveway. He had nurses—he had four nurses from Homecare, he had two nurses from palliative care, and he had a homecare attendant all day. From then on, things kind of looked up. They suddenly had people to come and take care of Dave, they had you know several people, three or four different people, caregivers. It was really awesome how you can’t get anything, and then when you actually make some noise, you’ve got it. Dave was amazed. I think I was fairly amazed too. There was a lot of people here that day, and phone calls to see, follow-ups from all of the political people, and it was really an amazing day. And from then on, we got some really quality homecare. But it wasn’t without me actually trying very hard to get it.

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I think you sleep less and less, and the anxiety gets more and more, and the burden gets more and more. And sometimes you just have this overwhelming palpitations in your chest. It’s just like—you can feel it. You feel you can feel the pounding of your heart. You think your chest—you have pain in your chest always on the left side. You think it’s a heart attack. You go to emergency and they do their tests and they say, “Well, you know, it could have been oesophageal pain, it could be you know stress.” I also got an itchy rash. Both my arms broke out in some kind of hives or something, and I had to get medication for that. And that, I was told, it was just stress induced. Of course it’s itchy and horrible and prickly—and the nausea and vomiting it just comes and goes. One day you feel like you’re going to be able to eat, and then you, you just can’t eat all day, and you don’t know what’s wrong with you. And people would say “Well, just eat.” And it’s just a feeling of, like when you’re pregnant and you just have the nausea there and you don’t want to smell anything, you don’t want to look at anything, you just don’t want to eat.

And then there are the days that you can eat all day long. And I gained 60 lbs in the six years, so I guess its 10 lbs a year for me. Dave would always have me, when he was maybe two years into the disease, he would always have me pull him, pull him up. I’ve got over used biceps—very painful—and my back also suffers. There’s just chronic back pain. There’s just so many things that will happen to your body. I wasn’t about ever to tell him, “No, I wouldn’t do it,” that I wouldn’t lift him, that I wouldn’t pick him up push or pull him. But it took a lot on my body, bending over the bed, bending over the bathtub. It’s a lot.

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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? My chest feels better.” I don’t know if it’s like the lifting of the burden off your shoulders, or exactly how it goes, but it felt a lot better that way. I was always wondering if he was going, [if] Dave was going to suffer. If he was going to be days without eating because he did say he didn’t want any intervention; he just wanted to die a natural death. And if I was going to see him struggle and not breathe, if he was going to flap his arms and legs, and if I was going to witness that… I just didn’t know what I was going to see or what I was in for. I took the job on, but honestly I didn’t know what I was going to see in that last day. It is very comforting for me to see him pass away that way. It was expected of course, but still shocking on that particular day. I never thought it would go that way, but I’m glad it did.

The period after, how are you adjusting?

I slept. I slept, I slept 12 hours, 14 hours, many hours. I spent it alone. Many people wanted to come over. My son and I spent the time alone. I just said, “I want to be alone. I’ve been grieving for a really long time. It didn’t start today. It didn’t start yesterday.” So for us, we wanted to be alone, my son and I. Our daughter, his sister, came from Europe and her husband as well. And we spent time together as just five of us, four of us now, four of us. And that’s how we spent the time afterwards. My son’s been very strong for me. He’s told me, “You did a good job.”  My daughter also told me that. Not always did they think I did a good job, but they have told me that in the end.

I’ve gone back to work. I’ve picked up more hours. I feel very sad, and the other thing I miss is the being lonesome for my husband. It’s not that I need company all the time or would like company all the time, it’s only my husband that I’m lonesome for. So having people or company over wouldn’t be the answer to that. But the service went very nicely. It was a really nice service. And Dave didn’t take part in any of it. He didn’t want to talk about any, anything. So he said, “You do it.” So I did. I wish he would have helped but he didn’t. I’ve taken care of some of his clothes and donated them. Like I said, I went back to work and it’s good, it’s good. And I sleep.