Christine

audio only
Age at interview
53
Age at start of caregiving activities
46

Christine is 53 years old and has lived most of her life with her parents. She lost her job shortly after her father died and became her mother’s full-time caregiver when she was diagnosed with multiple system atrophy (MSA). Christine recently had to make the difficult decision to move out of her parental home where she had lived with her mother as the caregiving tasks were seriously affecting her own health.

Christine found that providing care for her mother gave meaning to her life while she was still in mourning for her father. Initially she felt proud to make it possible for her mother to remain in her home thanks to the care she was providing, but throughout the years, her mother’s condition deteriorated considerably and the caregiving tasks became more and more challenging. Christine started to lose herself so much in her caregiving role that it was difficult to find the time and energy to search for work.

Christine’s siblings had a hard time understanding her caring situation and were hardly involved in helping her with these tasks. She felt that they were not actually contributing to her mother’s care while continuously commenting and criticizing Christine’s efforts. For example, her sister would endlessly accuse her of abandoning her mother whenever Christine took time for herself to visit friends. Christine asked her sister to look after her mother so that she could go on a much needed four-day holiday, and her sister reluctantly accepted. Nevertheless, she refused to arrive in time to take over the care when Christine was scheduled to leave the house. In this short period of absence of care, her mother made a bad fall and ended up in the hospital. A period of rehabilitation followed before her mother could return home with a further loss of abilities. In the meantime Christine’s initial feelings of pride for caring for her mother started to disappear.

After the rehabilitation period, the caring demands of Christine’s mother increased so much that Christine became seriously affected by her situation at a psychological level. Exhausted and stressed, Christine started to have suicidal thoughts as a way to get out of her situation. These thoughts forced her to seek quick admission to a crisis support centre. Paradoxically, in spite of her delicate mental state, Christine felt that the 10 days that she spent in this facility were like a holiday: finally she could catch up on her much needed rest and sleep. After this healing period she decided that she had to get out of the house and break contact with her siblings in order to protect her own health. Christine explains that her siblings, who were then obliged to take over the care for their mother, were unable to do so and decided to place her in a long term care facility. Today she finds it very difficult to see her mother in this facility knowing that things may have been very different if only she (Christine herself) had received the support that she needed.

Today Christine does not regret having taken these difficult and painful decisions as she realizes that this was the only way she had, at the time, to protect herself from serious mental illness. She visits her mother as often as she can, works hard on her mental recovery and is slowly rebuilding her life. She has learned that strength comes from determination as much as from making the right decisions before is too late.

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So I think it should be once someone has a chronic illness or is in need of the caregiver—has a caregiver—I think that not only should the person who is ill get the help and the doctors involved and nurses and social support—the social services—but I think when they realize there’s a caregiver involved, I would hope that sometime, some day, right away, it would be an automatic thing: “Well, these are the services available for the person you’re caring with, but also these are the services available for you that are very important.” Because you always hear that. You always hear, “Oh, you can’t do it alone.” You can’t, and you don’t realize it until either you’re right in it and you don’t know where to turn, or it’s too late. And I’m not saying like I’m over, my life is over. To me, I’m just restarting my life, or building up my life again. But I became very sick as a caregiver and I didn’t get that support that all caregivers should get. Never mind like getting some kind of financial help, just the recognition and everyone says it.

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She had someone come in twice a week to help her with a bath. And the only reason she got the twice a week is because she’s incontinent. Because otherwise it’s once a week. Now, that’s fine. There was the cleaning person. There was someone, a companion, for about two hours a week so the caregiver can rest… I remember, my mother—I think there were two or three different companions that came because they could never always guarantee it would be the same person, which is ridiculous because when you let someone into your home and you want them to interact with, say your mother, if she keeps having to meet a stranger, especially if she’s an older person, it doesn’t really work, and there’s not always a good connection. And there was this one woman that came that was horrible. But I was so out of it I just saw this woman would kind of toss her cigarette butt outside the front door and walk in and kind of made herself at home right away and really was… but I was so out of it I just said, “Well here’s my mother. This is the caregiver. I’m taking a nap.” And I went upstairs and I thought, “I don’t care if she rips off all the silver in the house,” or if—not that she’d tie up my mother and, like, steal her jewels, but I was at that point. I was so frustrated and out of it. It was just like, “Here’s the caregiver.” Like, “I’m taking my two hours that this is what this is all about.” And well, it turned out that she wasn’t such a great woman. She didn’t steal anything, but my mother was not very impressed by her.

Yeah, we got that, a two-hour respite care. That’s it. Now, the difficulty with that was that I had to be there when the cleaning woman would show up, and when the care respite woman would show up, because my mother could not go up and down steps alone. And our dog who is harmless, but is afraid of everything—so she barks because she’s afraid and is a medium size—so most people are afraid of her when they first, they don’t know her or meet her, and I noticed a lot of these people from the CLSC are afraid of dogs. So, she would have to be put in another room. Well, my mother, who is very fragile, could not wrestle with the dog and put her in a room, or go down and answer the door on her own. So, in other words, I would have to be there all the time.

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I was very fortunate that when I left… fortunate… I had no more, I didn’t have an ounce of caregiving left in me. I had no physical or emotional strength left, and I don’t want to sound like a drama queen, but that’s the case. I really didn’t, I wasn’t… I was very fortunate to find where I’m living now, and it’s perhaps a bit more… I needed a place that was safe and quiet and that was—like, I didn’t have any furniture or anything so this is furnished and everything’s included. I was lucky to find this place because I felt at home here the minute I walked in. It was sunny like it is right now and the owner of the building—I mean, she wants her rent but she was also… I explained my situation that I was not working at the time, and that doesn’t look too good when you’re looking for an apartment to rent. But it so happened that I mentioned that I had been caregiving and she had taken care of her mother for many years and she knows exactly what I had been going through or how I felt. And it wasn’t out of pity she did this. She just felt that there was a bond there. And maybe I have a trusting face, but I said, “I can pay my rent every month. I promise and guarantee that.” And she believed me, and I was being truthful. I just I had to be here. And she took a chance on me and it’s worked out. I’ve been here about 10 months now.

And how it made me feel when I left? Well, I got a lot of phone calls from my sister telling me I, again, abandoned my mother and that she was going to report me for elder abuse and she would call up some of my friends and try and talk against me. And well, that wasn’t too smart because they experienced what I went through in a way, and they were not agreeing with her. So, if she was expecting support from them, she called the wrong people. But she was talking behind my back to anyone who would listen how it was horrible how I left so quickly and abandoned my mother.

And I basically said to her, “Well, I didn’t leave that quickly. Yeah, I found an apartment right away and I’m leaving within a month. That sounds quickly, but for years now I’ve been asking for help and I never got it. So basically I’ve been working towards this for years.” So in my mind, it wasn’t leaving quickly.

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I helped her as much as I could up and down. And she’s a small woman and I am a small woman also, and I almost tripped helping her down the steps twice, and that scared me. And I also developed a lot of physical symptoms myself, of exhaustion and depression. And I got to the point that I thought I was losing my mind, and I considered suicide. And I heard of a crisis centre where I could go and spend 10 days, and meet with psychologists or psychiatrists twice a day; and for that you get lodging and meals, home-cooked meals, and just you could do whatever you wanted. You could sleep or read or watch TV, smoke cigarettes all day and all—well not all night. They had a curfew. And I went, and it was almost like a vacation to me because I didn’t have to think of what I had to make for dinner or cook it. But I had developed a stuttering—I was stuttering—and a tic in my eye and exhaustion and confusion and dark thoughts. Speaking to professionals helped me to maybe see more clearly and realize I needed more support.

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I was not expecting to lose my job, and certainly we were expecting my father eventually to die. So, I think his death and losing a job at the same time in my life was very hard on me but I had to push it behind me in my head because my mother was becoming more and more in need of help. So I was in mourning in a way, and also becoming more and more of a caregiver. That gave me a sense of, like I knew what I was doing. There was a focus, a sense of knowing the situation. I’m taking care of mom’s house and I’m helping mom. So, I knew I could deal with that. […] Something concrete, whereas my father’s illness and his death was something I had to learn to accept or live with. I had never lost a parent before. I had never… and the way I lost my job was… I was like stabbed in the back. It was one of those bad situations, and that was very frustrating to me. So instead of maybe really dealing with those 2 things—the loss of a job and my father&’s death—taking care of a house and my mom was something—or she was appreciating it. […] It was concrete and I could get, I could feel pride doing it. I was helping her remain in her home and I felt pride in doing it.

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For outside help or support from the CLSC, I would say you don’t really know what’s out there as far as help. You really have to have connections, or make tons of calls, or think of asking questions to the right people in order to get the services that you might need, and also services you might not even realize you need but are out there for you. I’ve learned a lot in the last few years of those services, and I can even see an improvement in their services in the last 5 years. There’s more out there, but you need to either have a professional who is knowledgeable of the services and [who] will tell you about them so you can investigate and acquire the services, or just go for it and ask and demand and request until you get as much help as you can get from them. We were able to get more help for our mother but not until the primary caregiver—which was me—was way past being able to be a caregiver.

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I met someone who became very special to me. I was dating someone and that, in my lifetime, it has not occurred very often—that I became very interested and attached or went out with someone—and I was very happy. And he lived close by and he actually cared for his mother and we got along very well and… Well again, like she said, “You’re abandoning your mother.” And everything I did that didn’t concern our mother, or caring for her, or the house was considered selfish or abandoning. And anything I did was never good enough. Like, she would say, “Is mom eating well?” And I said, “Well, I buy the groceries. I make the food. I can’t force feed her. She’s eating like she’s eating.” And she said, “Well, I think mom is losing weight.” And I said, “Well, if you don’t like what I’m making or she doesn’t, why don’t you do it?”

And she said, “I will. I’m going to come once a week and make a nice dinner for mom.” And that was in 2007. In 2011, I was still waiting for her to come and make dinner, not only once a week, but once.