Anne

audio only
Age at interview
62
Age at start of caregiving activities
37

Anne (62 years old) lives with her husband and two of her three adult children. Anne’s husband became a quadriplegic 25 years ago following an illness, after they had been married only five years. Currently he needs consistent help with eating and medication. Anne’s youngest daughter had a serious car accident nine years ago and suffered serious brain damage. She is 24 now, but like her father, requires special care at home. Anne goes to work during the day and her husband is able to stay at home unaided while her daughter is involved with regular activities with paid people. Now that her children have grown up and can provide help with caregiving, Anne’s tasks have become a bit easier.

When Anne and her husband had two small children (18 months and three years of age), he was admitted to a hospital with a disease that finally resulted in intermittent quadriplegia and chronic pain. A period of one year in a rehabilitation centre followed. Nevertheless, Anne’s husband returned to their small new house in a wheelchair with no ability to move. They didn’t put too much effort in adapting the house, convinced that he would fully recover. This period was physically demanding for Anne, as she had to transfer her husband from his wheelchair to the bed and help him with toileting in a small bathroom.

Anne’s husband continued working hard on his rehabilitation at the hospital during the week and was home on the weekends. He learned to transfer himself from the bed to his wheelchair. Although this period was filled with uncertainty about what was going to happen, the family continued to be hopeful for a good recovery. Five years later, they realized that he would never walk again, and over time, her husband has become weaker and his pain has increased significantly.

During these initial years, Anne’s life totally changed. Her marriage was transformed into a caregiver’s relationship where she had to find a full-time job and take care of two small children. However, she managed to establish a successful career while taking care of her husband and daughter and their home. She describes this as a long and stressful period, without respite or any personal time.

Anne has received little information and support for her husband during the past 25 years. Starting on the day her husband came home from the hospital, there was no information or support system for his care, and little support from her husband’s family. They have gradually vanished out of their lives, except for rare yearly visits by his two brothers.

Anne’s family now receives 45 minutes of help from the Canadian Counselling Association (CCA) instituted only after her husband had a couple of serious falls. Every year they feel subjected to increasing pressure from the CCA to reduce the 45 minutes assigned to their case despite the fact that Anne’s husband needs have increased along with his age. One of Anne’s worries is that her husband may agree, under pressure, to reduce the time. She also worries about what will happen once he will no longer be able to remain at home alone during the day because of his reduced strength.

Anne’s second major caregiving responsibility began nine years ago, when her daughter was hospitalized for one year following her car accident. Anne left work for six months, returning only when her supervisors suggested that she might resign. Her daughter was left with significant cognitive limitations although recovered physically and is able to live at home. 

When Anne’s daughter was young she had a great deal of support from family and programs for mentally challenged children like her. At 25 years old, she has fewer possibilities for support from health or social programs and is relatively isolated at home. Paid support workers take her out on a daily basis, this is partly covered by the insurance benefits from her accident. Anne tries to balance the care and time she spends with her daughter and her husband but she often feels stretched with little time for herself.   

Anne’s own health has suffered due to her situation. She has had chronic back pain since she started providing physical care for her husband, she suffers from exhaustion, and had a period of depression during the hectic times when her children were still small. She was once hospitalized for stress although it was initially suspected that she had had a heart attack. Anne stayed in the hospital for one full week, and she laughs when telling how sad it is that this period of rest was such a wonderful experience –  she was able to just sleep during that whole period.

After this, she realized that she had to make changes such as taking more time for herself. Now Anne finds time to see her extended family, but has few friends, because she has never been able to invest in friendships. With her daughters grown, the situation has become easier. She has taken her first one-week holiday, after years of no holidays at all. Anne’s turning point came when nothing made sense anymore and she was confronted with a side of life that she had never seen before and didn’t want to know. She felt sad to find out that so many people that had been through similar experiences had killed themselves. She explains that life can be truly horrible when you have little means and support.

Over the past 25 years, Anne has gone through countless emotional issues and has managed to resolve them. Today she feels well emotionally. She has found help in coping through spiritual and self-help books, as well as meditation. She appreciates simple offers of help, such as from her husband’s cousin, who cared for him on two occasions so that she could go out. Anne accepted these offers, knowing that the future is uncertain, but the present is real.

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And as far as your marriage life, it kind of just deteriorates. It’s just like a job really, because he was in pain all the time, he didn’t feel well most of the time, he couldn’t stand to be touched because he hurt, right? So it did, as he got older, it got worse and worse and worse so that you’re just…it’s not a marriage anymore, it’s caregiver relationship. The marriage has kind of gone because when somebody’s chronically ill, they don’t have the energy or the patience, I’d say. And as they get older, they get more miserable and more pain. So it’s really hard to have a relationship with somebody like that. So it’s kind of like you get older and you just kind of deal with it.

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Oh there’s many ways I think they can improve service. Like these agencies that provide people to come into the home and help, if they’d stop trying to pull the hours away and try to make people feel like they don’t deserve those hours. Like that’s really wrong. I mean, he has a horrible life. I mean, for somebody to come in and help him in the morning for three quarters of an hour, that’s a big deal that they want to even take that away from him? Like assess people properly, try and understand their needs and give them the proper hours they need or help they need, and not try to pull it away from them all the time. Because now, like, he worries me sometimes because I’m afraid one day he’ll agree to give up his hours, right. And he’s getting worse not better. He’s going to need more care, right. And that’s the other thing. There’s a number of things I’m worried about that way. If he gets a lot worse, what do I do then? I don’t know. I don’t know if I could get him into a home. There are line-ups now to get into homecare. Like what do you do? And I don’t even know what’s available there. I don’t even know who you ask about that kind of stuff. I mean, considering I’ve been in this for 25 years, nobody’s come forward with a lot of information or help or anything like that.

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And talk to the caretakers about finding time, or help them find time, that they can get away and get a break so they don’t have a breakdown. And the thing is, I realize too because my mother-in-law—oh no, my dad’s second wife, yeah—she had the exact same thing happen to her that happened to me. Because she ended up in the hospital and I asked her what happened and it was exactly the same thing. She just kind of had a stress breakdown because she was looking after my dad who was really sick; she had to keep taking him to the hospital and all this, and I think that happens to people quite often. They get to a point they’ve just had it, and that happens to them. And that caregiver… the professionals should talk to people about that kind of stuff—to watch out, what to watch out for, make sure that they take breaks every once in a while, and also maybe look at the family a bit closer to see that the kids don’t suffer because of all this…that they’re going through too. There’s so many levels to this thing, because I know it’s had an impact on my kids definitely.

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For me, I read a lot of—I don’t know what you’d call them—spiritual books, self help books, to help me with how I feel […], like dealing with myself and my emotions and how I react to things. That’s how I dealt with it. Because you get to points where none of it makes any sense anymore. That’s really frustrating, when nothing makes sense. When you can’t get any help from the medical people, when your families don’t support you. It’s a real eye opener in life. If you just go through a normal life and nothing happens, you don’t see this. But when this stuff happens, you see all the stuff. It’s a world you didn’t want to know about. And that’s one thing I remember saying, that I did never wanted to know this side of life. You don’t know it if nothing happens to you right?

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I went through many years, and it was really hard and very stressful on me, and I hit a point where they thought I had a heart attack, but I didn’t; I really had a stress break, a breakdown or a stress whatever. I ended up in the ICU unit for coronary care because they thought…and when they started talking to me, they realized that it was pure stress that had done that to me, and they made me stay in for a week, which was great because I just slept for a whole week. It was really nice. Isn’t that terrible? That you have to get to that point to take a break? And then after that, I started looking at it more, meditating, trying to figure out ways more to deal with things because it had been just too stressful for many, many years.

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One of the problems I have, too, with his condition is his pain is getting worse and worse. And we get no support even from the doctors because they say a lot of the pain killers are addictive and they don’t want him on them, which I don’t understand because, if you’re in that bad of pain, just to suffer constantly is insane. Who cares if he gets addicted if he’s got some kind of comfort? But, I mean, he’s in terrible pain at times. I don’t understand that at all. I’ve gone to his doctor and got really mad at his doctor and said, “Why won’t you give him anything?” He says, “Well, he’s got an addictive personality and na, na, na, na.” I don’t understand it. Why they would allow somebody to suffer as much as he’s been suffering in the last while, it makes no sense to me.

Can you describe how that feels when you are there as a caregiver in that position and you feel you don’t get any help?

Oh angry. Angry, frustrated. I mean, I went in and screamed at his doctor—my husband got really mad at me. I just got so frustrated with the lack of care. They just didn’t care. It’s a lost cause as far as they’re concerned. They put no effort in, they don’t have any help. I just get so fed up with them. And so now when I go to the doctor’s, I won’t even go in with him to see his doctor he makes me so angry. I just sit in the waiting room because I know I’m going to be negative. So he doesn’t, my husband doesn’t like that. So, I don’t even go in; I just get too frustrated with them. And there’s nothing you can do about it. There’s no point in even getting angry at them because it doesn’t do anything. It does nothing. I find that really frustrating.

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I feel like through most of it, we never got much support from anybody. Not family. The family disappeared. Everybody was there in the very beginning, and then the family just disappeared. And I mean, he has a brother who lived ten minutes away from us. He visited us maybe once a year. I haven’t seen them in, I don’t know, five years now. He has one brother who didn’t visit him either, but eventually now that he’s older, he starts to visit him every couple of months maybe. So, he was kind of isolated, everybody kind of drifted away and didn’t bother with him. And I’m at work all day, so he’s alone a lot of the time too, so it’s a hard part for him too.

I was really shocked that his family disappeared. His brothers, I thought they would be there for him, but they weren’t there for him. Even my family, I mean, they tried to support me, but nobody ever offered to come and stay with him so I could go out. Nobody, nobody wanted anything to do with it really. I guess because it was a horrible situation and they want to pretend it’s not there. But no, it hasn’t been a positive [experience]. Some people might think they have a positive experience, but I didn’t have a positive experience at all.

Have you ever asked for help to these friends or family or have you?

He has a really nice cousin. He actually came twice. But when you ask people—like even with him—I felt like I was inconveniencing him. Like, “Yeah, okay. I’ll do it,” kind of thing. Nobody said, “Yeah sure. We’ll help out. We’ll give you a break.” Nobody’s ever done that. Never ever, nobody. So, I don’t have that kind of support.

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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.

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But I think with me, it’s the kind of person I am, I couldn’t put him in a home. I could not live with myself to know he’s in a home, because my mother was in a home. And we had taken her to a couple of homes—she had Alzheimer’s so we had to put her in a home—and some of those homes are hell holes. Just I was disgusted and after seeing those places. I could not as a human being put another human being in a place that’s like that. I just couldn’t. I couldn’t live with myself not knowing how they’re treating them, if they’re making sure they’re clean. Like I saw some pretty ugly stuff when my mom had Alzheimer’s, and I couldn’t do that to another person. And I think that’s so shameful that we have places like that, that they’re putting old people in. They know that now. They’ve seen people abused in these places. They know all of this stuff. They just want to close their eyes to it. So I think we’ve got a long way to go to looking after people that have problems or disabilities or old, are older.

A part of it is dealing with—like there’s such an ugly side to this; it’s just horrific. In the beginning when you see the awfulness and then you see these other people in the same situation, what they have to live with. it’s kind of coming to terms with that kind of stuff and saying “Well, I’ll do the best I can and make him as comfortable as I can,” and that kind of thing. Just treating another human being like a human being. I mean, I’m not perfect by any means. I get angry at him and everything else, but I still couldn’t put him in a place and just throw a human being away. No, not going to do that. So that’s really what is the underlying thing.

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There’s such an ugly side to this; it’s just horrific in the beginning when you see the awfulness and then you see these other people in the same situation, what they have to live with. It’s kind of coming to terms with that kind of stuff and saying, “Well, I’ll do the best I can and make him as comfortable as I can,” and that kind of thing; just treating another human being like a human being. I mean, I’m not perfect by any means. I get angry at him and everything else, but I still couldn’t put him in a place and just throw a human being away. No, not going to do that. So that’s really what’s the underlying thing.

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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.