Uncovering how and why caregivers care
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.
By nature, Susan is a helper. She has received care herself and she knows how important it is to give.
Transcript
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 […]
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.”
Inez and her husband have lived together for 64 years. She does not see the caregiving as a problem, but rather as a part of their life together.
Transcript
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.”
Rowdyneko would love it if caregiving were fun, or brought her closer to her husband. Unfortunately, this is not the case for her.
Transcript
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 […]
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.
Anne feels that she would not be able to live with herself, if her husband was in a facility.
Transcript
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 […]
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.”
Rhyannan feels that caregiving has helped her grow and be more compassionate.
Transcript
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 […]
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.”
Joseph wanted to do everything to reduce his wife’s suffering, although he was uncomfortable with some requests.
Written testimony
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.
Shayna started by trying to do everything, but realized later that it is hard to change.
Transcript
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 […]
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.”
Elaine wants to be proud of what she has done as a caregiver.
Transcript
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 […]
Drew thinks caregivers need to feel they can overcome most obstacles.
Transcript
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 […]
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.
Review date: 2019-09