During the interviews, most caregivers explained why and how they had become a caregiver. Many caregivers also spoke about how they approached their caregiving role, for example, by encouraging the independence of the care recipient or cultivating their own compassion and patience. On this page, we describe what caregivers said about how and why they care.
Why be a caregiver?
The people we interviewed gave several different reasons for why they are caregiving. Despite different motivations, all caregivers tried to care with love and dedication. Several caregivers described a kind of intrinsic feeling, or something inside themselves, that made it natural for them to care.
It probably did. It’s a very good question. I think by nature I was a helper, and so it was very difficult for me to receive assistance when I required it for medical reasons. But when I received it, I realized how important it was and I think it probably enhanced my understanding of how important it is to give.
Other caregivers appreciated the past relationship with their partner and considered caregiving a natural phase in life. Mike, for example, said, "My wife raised our children when I was away when we were young. Now, it was my time to pitch in and start doing what she had done and continued to do for years. So, I just felt that it would be my turn. And it's not as easy as it looks. And I knew it wasn't going to be easy."
I am determined that when we got married it was for better or for worse and it was forever. So because we’ve lived together, it’ll be 64 years in November, and we have never had an argument so our relationship is very close as well as being man and wife.
Rowdyneko, who had been married for 38 years, is very honest about her motivation. She is doing it because she has to. She said, "I've hated every minute of it. I'm saying that from a personal level. I don't want that misinterpreted to think that I've hated my husband."
I mean, if I’m brutally honest and I said this to my friend the other day who I can say these things to—and I’m not sure if you want, you’re going to want to put this in your interview—I said “You know, if I’d known 5 years ago what was going happen, I might have walked away from the relationship.” Because it’s, well a) you don’t have a relationship; you have a sick person and someone looking after them. And maybe some other people manage to get around that. I haven’t really figured out how to get around that, because I so dislike the whole care-giving thing. And I think in some ways my husband hasn’t figured out how to get around that either because he knows that I’m not happy doing this. I mean I try and do it; I don’t complain. And somebody said to me the other day “Well you never complain about this,” and I’m going “Well what’s the point, there’s no point in complaining. It’s just what I have to do. I mean, no choices here.” So, not much point in complaining, not going to change anything. But I’m sure my husband would tell you there are times—like I don’t do it willingly; I do it because I have to. And I don’t, I’m not really that happy admitting that. I mean, it’s true but I’d like to be doing it because it’s so much fun, or it brings you closer or…No, I mean, I don’t think that’s true. It’s not true for me anyway.
Others also said that they could have found a facility for their care recipient, but they felt it was their responsibility to care for their loved one.
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.
Other caregivers felt a strong commitment or obligation to care for their loved ones at home. Alyce, for example, said, "He took very good care of me, provided for me very well. And from day one I told him I would not leave him; I would take care of him if anything ever happened. So I've stayed with him 25 years and it's been difficult."
Joanne promised her father that she would care for her mother when he died. She said, "It's my personality; I'm a very responsible, dependable person. […] I've made a commitment to my dad before he died. He was really worried about his wife, my mom, and I said to him, 'Don't worry. We'll look after her.' That's one thing."
Sheni said, "I'm looking after him because, you know, what other alternative is there?"
For Madhu and Kai, caring for a family member is part of their culture. Kai said "So culturally speaking, you're not told to look after a family member when they're ailing. It's more subtly put upon you. Like, there's nobody going around telling you, 'You should do this. You should do that.' You're more or less called upon to do it."
Well there’s a place inside of yourself, in the sense of your own self worth, to be able to address a need that’s out there—and such a critical need. Often this isn’t just making soup for somebody because they’ve broken their leg and they can’t cook right now, right. I think the most important one is learning compassion. Especially, I think for me, around 2 things: partially the dementia and the compassion allowing or helping you to listen through the actual words—what’s the message behind it? What’s the real need that’s happening at this point? Because you can’t argue things out, and you can’t convince people who have dementia, right? It just doesn’t work. So you kind of have to just keep, in yourself, going “Okay, what’s behind this? Where is the real need and how can I meet that need?” And […] there’s another part of that compassion for me as well. It has to do with empathy. I mean, I really love the word compassion because it means together in passion, right? And so you’re stepping into a place where you’re sharing what is passionate for somebody else. And in a caregiving situation, I mean, sometimes that would be around really joyous things—children and grandchildren and, and whatever that person’s particular passions were—but a lot of the time it is around their fear. The passion around their fear, their hopes for their lives that have been removed, have been taken away by their illness. Yeah, and for me that’s the most important thing—of being able to sort of walk into that place as much as possible with them and understand what the need is behind it […] and—maybe if it’s a sort of funny thing to say—is the best part of it. But I think, especially in this situation because our caregiving person is not somebody that I was a personal friend with, what I benefit from in doing this is my own growth and compassion.
Approach to caregiving
Several caregivers believed at first that they could do everything alone by responding to all the needs of the care recipients by themselves. Richard said, "I just thought this is my job and I have to do it. I want to look after her. I love her, and whatever comes up, I'm tough; I'll deal with it. And I became superman. […] I was trying to keep things going the way they had always been going. And that becomes increasingly hard when the other person can do increasingly less."
Some requests were made, the difference at that moment was that before I left, while my perception or my views were, well, my partner is in a particular context, and I will do everything that is in my power to prevent her from suffering, so that she can enjoy life as much as possible. So, when she made a request, I tried to respond as much as possible, and then… But there were requests that weighed me down, or that I found heavy, that I had difficulty to respond to, or I was like reacting to, but with my view of things, it was to allow, as much as possible, to experience pleasant things.
And for me that was making my husband as independent as I could, functioning as a family as best as we could, as normally as we could, although normal is a relative term. When we were, when my children married they moved east. We were in the mid-west and they had always asked us to move closer to them, and I didn’t want to burden them with the illness. I’m a protective mother and I really didn’t want to do that. So my kids sat me down and tried to explain to me how it’s more difficult for them to be so far away every time he winds up in the hospital. The push between leaving their own families and coming and so on was difficult. And after my husband, as I said, wound up in intensive care before my son’s wedding, it was the first time my kids were there, and it was the first time I didn’t have to make decisions on my own that I had someone to talk to. And I said “Okay we’re going to make the move.” And that’s when we decided to move which was an experience in and of itself.
When you’re caregiving, most of us are at that bottom of the totem pole, and it’s in cement. And it’s in cement to everybody around you, and that’s impossible to change. You start out in the beginning of the illness because this is your natural thing to do. It’s like a…You’re going to take care, you’re going to do it, the kids are not going to be affected, everything’s going to be great and I’m in charge. Twenty years later you’re down there and you’re still in charge whether you like it or not, and nobody is going to let you change it. The dynamic is set and it’s set very early on and a caregiver, certainly the caregivers I’ve spoke to, nobody has time for themselves unless they steal it. And then somebody’s there to criticize them for it.
Like Shayna, others also spoke about trying to be responsive while also promoting independence. Joanne, for instance, does not always agree with her mother's decisions: "I don't see her always making the right decisions according to what I think, and according to what a whole lot of other people think too, but they are her decisions. I can't force her to go to the day program. I can't force her to use her walker. I'm not going to turn this into a police state, you know. I try and support kindly, but firmly."
Several caregivers spoke about trying to be the perfect caregiver, but realized that they cannot always do a perfect job. Claire, for example, said, "I think that's the hard part. I would like to be the most exceptional, caring, patient, kind caregiver 100% of the time. And then life happens, and loss of sleep happens. And then I'm not as kind, or as loving, or as patient. And then I feel guilty and frustrated, and start all over again."
And I want to feel proud of how I look after him. When I’m crabby and miserable, he’s upset. And does that make our day easy? No, it makes it 10 times harder. So if I keep and, what I think is, I’m trying to be kind to him every day and I find if I’m kind in every aspect of caregiving, in every aspect of just living with him, my day goes much nicer and so does his.
So the resilient thing for me is that, I guess, cutting to something like the fight or flight mechanism as far as human nature goes, where we say the easy thing to do—34 years ago for my grandparents and my family faced with a severely brain injured daughter with, at the time, very little chance of clinical recovery—the easy thing would have been, I think, would have been to say “We can’t do th
Some caregivers described how they advocate for their care recipient to receive the best care. You can read more about this in Navigating the system. In Hospitals and facilities, you can read about what it was like for caregivers to decide whether to care for their care recipient at home or have them live in a facility.