In this page you can read about peoples’ experiences as they found ways to adapt to their new responsibilities and accept their role as a caregiver. You will read about how caregivers talk about changes over time with their care recipient, and how spouses adapted to their new roles. Most people we interviewed had experienced a particular point when they realized that, in addition to being a parent, partner, child, or friend, they had also become a caregiver for their loved one. This did not mean that everybody was necessarily feeling comfortable with the title “caregiver”, or with their role. You can read more about this in the topic page becoming a caregiver.
Acceptance of the caregiver role
The people we interviewed accepted their roles differently. Some caregivers spoke about having to accept the role in order to deal with their responsibilities. Others felt the responsibilities were thrust upon them. Michael said, "I think you just have to accept who you are and move forward because if you stand on the sidelines and just are angry that you are in this and you can't get past that, you're really headed for trouble."
I went through periods where I was depressed and angry with our life, and thinking, “Well, how come we have to have this? We’re young, yet we should be able to pick up and go on trips just like nothing; we shouldn’t have to be dealing with all this.” Well, that’s silly; that’s negative thinking. If it’s not us, it’s somebody else. I mean, what’s so special about us that we shouldn’t have this?
He’s in a transition unit now. He’s not in acute care, which is somewhat better. I do find—because I found visiting him in hospital in acute rooms I was really grumpy—I just do not do any of this stuff well. I mean honestly, I’m being really honest when I say I do this caregiving kicking and screaming. I mean, I was dragged into this by circumstance. I mean, never ever. I mean, I can remember in high school in my day, pretty much your choices were to be a nurse, a teacher, or a secretary. Those were your 3 options. And I can remember going on the future nurses’ tour because this was one of the choices. Man, I stepped in that hospital and I went “I am never doing this in my life.” I had such a strong reaction to that. And I grew up in a home that was very stoic. You didn’t get sick; and if you got sick, you better be damn—I mean, my brother broke his knee and nobody believed him for about 2 weeks. We thought he was shirking his chores because we lived on a farm. And so, that’s the kind of upbringing I had. So, you don’t get sick, you don’t. You don’t do any of this, you don’t do this stuff. So this is totally—I would not wish it on anybody. Now my friend, I have a friend who is a recovering alcoholic, and she always says to me, “Well, there has to be some lesson in this,” she says.
Several caregivers experienced feelings of progressive loss because of the changes experienced in their care recipients' health or behaviour over time. Christiane said, "You lose a bit, then a bit more, then a little bit more and more." This is how Alyce describes loss: "I lost my husband, and the way I best describe it is 'he went overseas and he never came home,' and that's the hard part."
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.
So again, we did the best we could. Would I have done it differently in retrospect? I probably would have been more my own advocate as well, which I didn’t know how to be. Which is why what I do, now that I’m a widow, I try to make people aware. There’s a whole issue I think that people are afraid to talk about when it’s a female who’s the caregiver: the loss of feminism. You are pushing that wheelchair, often through the snow if you live where we live. I remember once we were invited to a party and all the wives were dropped off as I dropped off my husband and went to park the car with all the men, and then came back and again the invisibility and everybody chatting how wonderful it was to see him. And then all the husbands and I went to get the cars and shovelling off the snow and warming up the car. And then, as these women are waiting for their husbands to drive up and go into the warm car, I drove up frozen to get my husband in the car and it just hit me. There’s a whole piece of feminism—and that is a very integral part of being a woman and in a marriage—that is gone. It’s really gone, and that’s another loss that you mourn.
In several situations, the roles or relationships between caregivers and care-recipients changed as the illness progressed. Many caregivers started to take over certain tasks that the care recipients used to do before, such as looking after personal finances or daily tasks like taking out garbage and household cleaning. For some, this was a difficult process; for others, it was a moment to reflect on their responsibilities and roles.
The most positive? I guess, I guess just being able to help him. He was always the type of person that took care of any, everything. Now the shoe’s on the other foot, and I can help him. And like he said about the driving, “I feel so bad that you have to do all the driving,” and I said, “Well, you know what? For the last 60 years you’ve been doing all the driving. Now you just have to sit and let me drive. Just enjoy the ride.” That kind of thing, just help. Cooking, I didn’t like cooking at all, and he loves it. But he has to put up with my cooking. And I’m starting to enjoy it you know, starting to, yeah. It’s just that I can help him I think.
Spouses adapting to roles
Spouses who were caring for an ill spouse experienced other important changes. For example, they spoke about how society seemed to have different expectations for when you cared for a spouse compared to when you cared for a parent or a child. You can read more on this topic in society and caregiving.
The issues I had more trouble with where when I was caregiving my spouse, because the losses were so different. When you’re caregiving your mom or your dad, or your aunt and your uncle, there is the recognized thing that they are going to predecease you. That’s just the way, except in unfortunate cases, that’s the way that that the world works. So, I think your nature takes over.
Parkinsonians have great difficulty sleeping. So very often they’re up and down all night long. And this was happening at a time when we were both sharing our bed and sharing a room of course. And then violent dreams started happening.
Most spousal caregivers described a change or reduction in their feelings of love and affection for their partner. They also spoke of the loss of being sexually intimate with their partner as the illness progressed.
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.
Not every caregiver lost their feelings of love and affection; however, Matsonia, for example, met her partner when he was already diagnosed with Parkinson's disease and continues to have deep affectionate feelings for her husband.
In my trade, I have noticed women that would get Multiple Sclerosis and their husbands wouldn’t be able to handle that. They would start playing around on them and having affairs. And of course they’d feel horribly guilty. But you see, there’s been a change.
I think it’s out there if you really need to look for it. That’s where I see a big difference in other couples, because I see them pulling away from each other rather than still being a loving husband and wife. You become the…I get a lot of girls saying to me “I’m more like his mother. He even calls me mother,” although I would never have allowed that.
Illness and taking on a caregiving role can challenge relationships. Two caregivers described how they had a relationship with someone else in the period that they were caring for their wives.
I will go further and say that I was in that situation. I met another Well Spouse and it happened by accident, but we formed a relationship and we, both of us, had gone many years without having intimacy with our partners
So I told myself, “I have to leave from here. I can no longer live in these conditions.” I wasn’t able to anymore. And then I was… And then, well that person with whom I was involved with, it was a person that was…In any case, it isn’t recommended, let’s say, it’s not saying much but anyway, I will use the words that are the smoothest and so… This person, she had... had an apartment at one point, and it was a four and a half, and there was a room available, and me, I was searching for a place. Because I took some steps to find a room somewhere, to go live, and live some experiences outside, to take stock, to take a step back. And every time, all of the places I visited, I visited four, five. And then I felt like not good with this, and the person in question, well she said, “I could take a roommate,” and all. So, well, I felt like comfortable with this person. So, I moved in with this person. It’s certain that the roommate was… it’s relative. There are different forms of relations that we had together during that month and a half, roughly.
There was a period of time when it separated or distances us and then now, I have the impression that it brings us closer. In any case, that’s how I see it. Okay. Now I feel closer. When I left the house, I thought it was impossible. I left, and… I leave and I’m never coming back, and my mind was made up. And when I came back, I came back thinking it’s her that I married, and it’s with her that I want to continue my life with as well. There are parts of my life that are more—how can I say this—less intense from a sexual point of view. It’s very very limited there in terms of relations. And me, I am not an emotional person. My wife is however. So, it’s certain that there was a period of time when I was even reticent of all contact. Now, I am going to be a lot more receptive, a lot closer, more present. And then, but that’s… There were highs and lows. There was a significant enough variation at that level. But I will… and even my perception of my wife, she is—how can I say this—I consider her like my wife.