Amazing Alyce

Alyce
Age at interview
47
Age at start of caregiving activities
28

Alyce (47 years old) lives in a small village with her husband and their grown daughter. Alyce’s caregiving role started 13 years ago when her husband received a brain injury at work. Since then, Alyce’s husband depends a great deal on her care. Alyce provides this care despite lingering symptoms from a previous fracture in her back.

Alyce and her family used to live in the Maritimes where her husband worked for the army and studied at university. Thirteen years ago Alyce slipped on ice and had a compression fracture in her spine. A few months later Alyce’s husband was hit on his head by a piece of metal heavy enough to break his helmet and inflict his first serious head injury. He kept going back to the MRI almost daily for three weeks. The following year Alyce’s husband had two more accidents involving his head, both while working. During this difficult period, Alyce lost her mother to cancer.

Alyce’s husband was initially able to continue working after these series of injuries thanks to the care and support of his family. However, eight years ago the army let him go because of his reduced work performance, a direct result of his brain injury. Alyce is nevertheless thankful to the army, as they provided excellent support and guidance to her family during the first years of her husband’s illness. For financial reasons, she and her family moved to a much smaller village in another province two years after her husband stopped working. Initially, they enjoyed the changes and Alyce actually saw improvements in her husband’s condition. Then everything changed again when Alyce’s husband suffered a heart attack.

Alyce has noticed that her husband’s functionality improves when he visits his parental home, as if his mood and brain functions spontaneously improve in this context. At home, on the contrary, Alyce observes that her husband’s mood varies radically from day to day; he may be kind and affectionate one day and angry and frustrated the next. However, she is currently having the most difficulty with what she calls “the angriness and mental abuse directed towards the family.” She was advised to deal with it by getting out of the house and to wait until his bad mood has passed. However, this strategy is far from enough to help her situation, and her husband forgets about these attacks within a few minutes. Alyce struggles with the pain she feels from these assaults and her inability to confront him directly about it.

Alyce’s caregiving situation has negatively impacted her health; she has been hospitalised twice with caregivers’ stress and she lives with persistent back problems. She also has suicidal thoughts that she deals with by saying to herself that these are just moments she has to go through. She also reminds herself at those times that she has to go to sleep in order to wake up stronger and happier the next day. If she feels that she needs more help, Alyce writes to a good friend who always gives her specific advice on how to move forward.

Some people have advised Alyce to leave her husband although she does care for him and, despite the difficult situation, she feels determined to continue caring for him. Alyce realizes, over and over again, that she must take some time off and stay positive.

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I lost my husband at an early age and it hurts. It really, really hurts. And it’s not like he died where “Okay, I can go on with my life,” and “I’m grieving, I’m a grieving widow,” and get that kind of sympathy. No, I get the sympathy of “her husband’s injured.” And now it just seems to be people accept him. Even my neighbour who raised 7 kids when she met me and she said, she said, “I’ll never forget the first day I met you.” She says the first thing you said, “My husband has a brain injury,” and she says, “Glad I’m not in your shoes.” I’m like “Isn’t 7 kids harder to take care of?” So, she even saw me differently. You don’t have a social life. You lose him completely, so the husband I married is not the husband I have today, and he wasn’t a bad guy after all. He wasn’t drunk, he didn’t beat me, he didn’t do any of that so I feel gypped and I already dealt with losing a son from…and that should be enough in this world. Some people don’t even experience death. I’ve experienced two, and now my husband doesn’t really exist either, and it’s hard. I mean my anniversary’s coming up and I feel guilty because yeah, I’ve made it to 25 years, but you know I’m not having no wedding party, I’m not having a reception and have friends—I don’t have any friends to invite. We’re going out for dinner, but I don’t even know if it’s going to be fun. It’s more let it pass and forget about it. And the only family contact I have is my father. My brothers and sisters just don’t care and it’s not fair.

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I lost my husband at an early age and it hurts. It really, really hurts. And it’s not like he died where “Okay, I can go on with my life,” and “I’m grieving, I’m a grieving widow,” and get that kind of sympathy. No, I get the sympathy of “her husband’s injured.” And now it just seems to be people accept him. Even my neighbour who raised 7 kids when she met me and she said, she said, “I’ll never forget the first day I met you.” She says the first thing you said, “My husband has a brain injury,” and she says, “Glad I’m not in your shoes.” I’m like “Isn’t 7 kids harder to take care of?” So, she even saw me differently. You don’t have a social life. You lose him completely, so the husband I married is not the husband I have today, and he wasn’t a bad guy after all. He wasn’t drunk, he didn’t beat me, he didn’t do any of that so I feel gypped and I already dealt with losing a son from…and that should be enough in this world. Some people don’t even experience death. I’ve experienced two, and now my husband doesn’t really exist either, and it’s hard. I mean my anniversary’s coming up and I feel guilty because yeah, I’ve made it to 25 years, but you know I’m not having no wedding party, I’m not having a reception and have friends—I don’t have any friends to invite. We’re going out for dinner, but I don’t even know if it’s going to be fun. It’s more let it pass and forget about it. And the only family contact I have is my father. My brothers and sisters just don’t care and it’s not fair.

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When my husband used to have an anger issue, it would build up for a couple of days and you could see it happening. It would build up and then he’d blow up. He was—mental abuse, I’d call it. Nothing else. Nothing physical or anything like that. Now he is, he just blows up at you. You don’t know if you said the right thing or the wrong thing. Even, example today, I asked him to change his shirt. He said, “What’s wrong with the one I got?” Well, it was a few years old; I wanted him to wear a newer shirt. I bought him a new shirt to go out with, and he took a fit on that. The thing is he forgets in a couple of minutes that you’ve had a fight. He’s happy again and you’re not and he doesn’t understand that. So we also—now because he likes to sit in his mechanical chair which he got when he hurt his neck—he likes to throw things, and that’s not good either. So, I try to walk away. I’ve been advised to walk away, but it’s not that easy. Told to go for walks, but everybody likes to argue back and forth and it’s not easy.

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When my husband used to have an anger issue, it would build up for a couple of days and you could see it happening. It would build up and then he’d blow up. He was—mental abuse, I’d call it. Nothing else. Nothing physical or anything like that. Now he is, he just blows up at you. You don’t know if you said the right thing or the wrong thing. Even, example today, I asked him to change his shirt. He said, “What’s wrong with the one I got?” Well, it was a few years old; I wanted him to wear a newer shirt. I bought him a new shirt to go out with, and he took a fit on that. The thing is he forgets in a couple of minutes that you’ve had a fight. He’s happy again and you’re not and he doesn’t understand that. So we also—now because he likes to sit in his mechanical chair which he got when he hurt his neck—he likes to throw things, and that’s not good either. So, I try to walk away. I’ve been advised to walk away, but it’s not that easy. Told to go for walks, but everybody likes to argue back and forth and it’s not easy.

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I do know that I had been stressed out, this is—we’ve been here six years—five years ago, right after Bill had a heart attack. Sorry, it was before Bill had his heart attack. They call them anxiety attacks—your muscles hurt in here. And I had two of them. One was on New Year’s Eve and it would have been, it would have been ‘07, and it was New Year’s Eve and we were supposed to go out. We actually had plans to go to the bar and it was, it was a dinner, a special dinner for New Years, so a sociable drinking. And we had our tickets and I got this severe chest pains. And they were so bad that I thought I was having a heart attack and I went to the hospital. And they treated me just like a heart attack. They gave me whatever pill it was, and it actually worked. It cleared oh half my head; it felt great. I was sick from it though, and I had a bad night. Anyway, that episode passed. So when Bill had his heart attack, even the paramedics when they got here said he wasn’t having a heart attack; his ears were bothering him, just his ears. And he said they’re irritating him and he did have trouble breathing because I even said, “Should I call someone?” And he says, “No, you call an ambulance.” I said, “Are you sure?” He was alert; he talked to me. I managed to get him from upstairs to down here because I knew the—what do you call it?—the hospital bed thing would not fit in my house, right. I knew that much. So anyway, but when the paramedics got here said, “Oh no, he’s not having a heart attack.” They sent him to the next town over and then he had to go into Saskatoon. And by that time his heart actually stopped five times and they—oh yeah, they put two stents in his heart. I forgot that.

So anyway, about a month after that, with all the stress I had another attack. And this time our good friend was with us and he ended up taking me to the hospital. And I was treated there, and this time the doctor realized it was muscles. He pressed on my chest and realized it was muscles. And they still treated me for a heart attack and said, “You need help,” stress wise and counselling and all that. So I went right into counselling and stuff like that.

So from that time though, I was in really, really bad shape, I started to get my energy back. My friend came and helped me more, helped me with Bill, helped me drive, did everything basically, he’s like my mother okay. My mother always took control. My mother was always there for me, helped me here and there, and that’s what he did. And I eventually, I got my life back onto track and now that I find out it could have been allergies—you know anything—but it was just too much stress.

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I do know that I had been stressed out, this is—we’ve been here six years—five years ago, right after Bill had a heart attack. Sorry, it was before Bill had his heart attack. They call them anxiety attacks—your muscles hurt in here. And I had two of them. One was on New Year’s Eve and it would have been, it would have been ‘07, and it was New Year’s Eve and we were supposed to go out. We actually had plans to go to the bar and it was, it was a dinner, a special dinner for New Years, so a sociable drinking. And we had our tickets and I got this severe chest pains. And they were so bad that I thought I was having a heart attack and I went to the hospital. And they treated me just like a heart attack. They gave me whatever pill it was, and it actually worked. It cleared oh half my head; it felt great. I was sick from it though, and I had a bad night. Anyway, that episode passed. So when Bill had his heart attack, even the paramedics when they got here said he wasn’t having a heart attack; his ears were bothering him, just his ears. And he said they’re irritating him and he did have trouble breathing because I even said, “Should I call someone?” And he says, “No, you call an ambulance.” I said, “Are you sure?” He was alert; he talked to me. I managed to get him from upstairs to down here because I knew the—what do you call it?—the hospital bed thing would not fit in my house, right. I knew that much. So anyway, but when the paramedics got here said, “Oh no, he’s not having a heart attack.” They sent him to the next town over and then he had to go into Saskatoon. And by that time his heart actually stopped five times and they—oh yeah, they put two stents in his heart. I forgot that.

So anyway, about a month after that, with all the stress I had another attack. And this time our good friend was with us and he ended up taking me to the hospital. And I was treated there, and this time the doctor realized it was muscles. He pressed on my chest and realized it was muscles. And they still treated me for a heart attack and said, “You need help,” stress wise and counselling and all that. So I went right into counselling and stuff like that.

So from that time though, I was in really, really bad shape, I started to get my energy back. My friend came and helped me more, helped me with Bill, helped me drive, did everything basically, he’s like my mother okay. My mother always took control. My mother was always there for me, helped me here and there, and that’s what he did. And I eventually, I got my life back onto track and now that I find out it could have been allergies—you know anything—but it was just too much stress.

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I’m not depressed. I do go through suicide thoughts, and most of that is caused by I want to escape. I just want to get out of it. So I was advised to go for a 20-minute walk; not 10 minutes, it has to be 20 minutes and I have to get out of the house and relax. I believe in God and if it wasn’t for him, I wouldn’t be here today because when I do have a bad situation, I’ve taught myself to go to bed and tomorrow things will look better, but also I find for me I’m safe in my bed, and nobody can hurt me. So, that is my sanctuary and I can go there and wait for the pain to pass. Sometimes I can’t do that; I will sit in my car in the garage put my music on as loud as I can handle it and sit and cry. And I find sometimes things just get overwhelming and they pass easily.

Like I said, I do pray to God—there’s a lot of people don’t believe in him, but right now that’s the only person that seems to save me. Because when you get to a certain point, especially when you can’t tell the difference between right and wrong, you’ve hit that—yeah, you’ve got to get help—but you’ve got to, you got to come to your senses, and it’s hard. And I was really close one time, very, very close. And I had all these ideas going through my head on how I could escape this world. And when it became a reality, I knew something was wrong and I did seek help. But at that time, what did I do? I think I went to bed. I took Gravol and went to bed. But that’s the closest I’ve ever come to… but I was lucky because I was able to still have enough common sense—you know how you’ve got the good and the bad in your head, and your conscience. I have a guilty conscience all my life. So my conscience finally said, “No!” You know what I meant? It was that close, but I had enough common sense to say, “Wait. You’re still…this will get better.” And I started convincing myself and saying “It’ll get better. Okay, let’s think of something else and tomorrow… you can do this tomorrow.” And tomorrow never comes, but I was able to snap myself out of it and if I’m correct, I had written to […] my friend and then I took Gravol and went to bed. I had to sleep it off, and a lot of times you wake up in the morning and you forget a lot of it. I even forget most of the time. I wake up and go “Hey, today’s Tuesday… and oh yeah, I was in a bad mood last night wasn’t I?”

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I’m not depressed. I do go through suicide thoughts, and most of that is caused by I want to escape. I just want to get out of it. So I was advised to go for a 20-minute walk; not 10 minutes, it has to be 20 minutes and I have to get out of the house and relax. I believe in God and if it wasn’t for him, I wouldn’t be here today because when I do have a bad situation, I’ve taught myself to go to bed and tomorrow things will look better, but also I find for me I’m safe in my bed, and nobody can hurt me. So, that is my sanctuary and I can go there and wait for the pain to pass. Sometimes I can’t do that; I will sit in my car in the garage put my music on as loud as I can handle it and sit and cry. And I find sometimes things just get overwhelming and they pass easily.

Like I said, I do pray to God—there’s a lot of people don’t believe in him, but right now that’s the only person that seems to save me. Because when you get to a certain point, especially when you can’t tell the difference between right and wrong, you’ve hit that—yeah, you’ve got to get help—but you’ve got to, you got to come to your senses, and it’s hard. And I was really close one time, very, very close. And I had all these ideas going through my head on how I could escape this world. And when it became a reality, I knew something was wrong and I did seek help. But at that time, what did I do? I think I went to bed. I took Gravol and went to bed. But that’s the closest I’ve ever come to… but I was lucky because I was able to still have enough common sense—you know how you’ve got the good and the bad in your head, and your conscience. I have a guilty conscience all my life. So my conscience finally said, “No!” You know what I meant? It was that close, but I had enough common sense to say, “Wait. You’re still…this will get better.” And I started convincing myself and saying “It’ll get better. Okay, let’s think of something else and tomorrow… you can do this tomorrow.” And tomorrow never comes, but I was able to snap myself out of it and if I’m correct, I had written to […] my friend and then I took Gravol and went to bed. I had to sleep it off, and a lot of times you wake up in the morning and you forget a lot of it. I even forget most of the time. I wake up and go “Hey, today’s Tuesday… and oh yeah, I was in a bad mood last night wasn’t I?”

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There’s a caregiving group in [city in Saskatchewan]. I’ve gone to them for help. They had a good project on. It was 3 different nights. It was fun—it really was—and they even gave free food. Well, they just made you feel special. Like, the little teas and little dainties, they just make you feel special. The part I remember the most was about wills. How to write up your will, how to get power of attorney now before something happens, banks do power of attorney, stuff like that. That was really, really benefit to me. Prepare your funeral in advance and stuff like that if you can, and things like that. And my mom even taught me that write up your obituary in advance. You can put the date in later and fill in the little details, but write up what you want to write up now when you’re thinking calmly, because then, when you’re under stress, you don’t know what to say, and they’re not cheap to put in the paper. So things like that.

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There’s a caregiving group in [city in Saskatchewan]. I’ve gone to them for help. They had a good project on. It was 3 different nights. It was fun—it really was—and they even gave free food. Well, they just made you feel special. Like, the little teas and little dainties, they just make you feel special. The part I remember the most was about wills. How to write up your will, how to get power of attorney now before something happens, banks do power of attorney, stuff like that. That was really, really benefit to me. Prepare your funeral in advance and stuff like that if you can, and things like that. And my mom even taught me that write up your obituary in advance. You can put the date in later and fill in the little details, but write up what you want to write up now when you’re thinking calmly, because then, when you’re under stress, you don’t know what to say, and they’re not cheap to put in the paper. So things like that.

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I’ve had, I had a nurse come in one time when Bill cracked his spine, sorry his neck. He wore a collar and couldn’t do very much—we had to buy him extra large shirts because they had to go over. He needed a shave because the beard would irritate his chin, so I had one guy shave him. I had a nurse bath him, because of my spine I was afraid what if he fell on me then I’d be useless to him. He had a potty chair at the time and he had a chair for the shower. We had taken—because it was a different couch—we took a couch and we even put a coffee table beside him and made sure he was snug for 2 weeks. Actually it was more than 2 weeks sorry. I slept on the floor beside him for 2 weeks, but he lasted on the couch for about a month. He was not allowed to climb stairs. He was not able to do much on his own at all, and so that’s how he got his mechanical chair and the first time he got stuck.

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I’ve had, I had a nurse come in one time when Bill cracked his spine, sorry his neck. He wore a collar and couldn’t do very much—we had to buy him extra large shirts because they had to go over. He needed a shave because the beard would irritate his chin, so I had one guy shave him. I had a nurse bath him, because of my spine I was afraid what if he fell on me then I’d be useless to him. He had a potty chair at the time and he had a chair for the shower. We had taken—because it was a different couch—we took a couch and we even put a coffee table beside him and made sure he was snug for 2 weeks. Actually it was more than 2 weeks sorry. I slept on the floor beside him for 2 weeks, but he lasted on the couch for about a month. He was not allowed to climb stairs. He was not able to do much on his own at all, and so that’s how he got his mechanical chair and the first time he got stuck.

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When I started out with my husband’s income, it was cut. So, we were struggling with his pay. I actually made a list of all the provinces and chose which ones were too expensive; they were off my list. [A city in MB] is my hometown. I didn’t want to go back and I said, “Hey let’s go to Saskatchewan.” It was affordable. We bought this house, and we were able to settle down and retire. When Bill first got here it was a miracle he—we went to a restaurant and he knew exactly what favourite pizza I liked. I was thrilled to pieces; he knew things. He came back to life like he was 20 years old again. Then right after that, he went to visit his parents—now that we could afford to send him to his parents. He doesn’t like flying; he took the bus. Well 23 hours after he arrived home, he had his first heart attack. That was a disaster, and again he came home on my birthday.

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When I started out with my husband’s income, it was cut. So, we were struggling with his pay. I actually made a list of all the provinces and chose which ones were too expensive; they were off my list. [A city in MB] is my hometown. I didn’t want to go back and I said, “Hey let’s go to Saskatchewan.” It was affordable. We bought this house, and we were able to settle down and retire. When Bill first got here it was a miracle he—we went to a restaurant and he knew exactly what favourite pizza I liked. I was thrilled to pieces; he knew things. He came back to life like he was 20 years old again. Then right after that, he went to visit his parents—now that we could afford to send him to his parents. He doesn’t like flying; he took the bus. Well 23 hours after he arrived home, he had his first heart attack. That was a disaster, and again he came home on my birthday.