What is it like to be a caregiver?

On this page, you will find a collection of quotes from our interviews with caregivers. We felt that these quotes capture people’s thoughts, concerns, and perspectives on caregiving.

“It’s hard to describe how [being a caregiver] is. Because it’s like when you’re running a marathon, it’s hard to talk about it. I’m still in the middle of a marathon and I’m hoping to get to the end wherever the end is, but I haven’t had time to really process it.” (David)

What is it like to be a caregiver?

I think also the word caregiver is sometimes difficult for people to hear so I’m not sure that that’s always the best word to use. I mean professionally, I know that’s what a large group of people—whether it’s a little bit or a lot of caregiving, they fall into this range. But for me, I think most of it is just being a daughter.

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Seeing the care recipient suffer

“Being subject to things that you never want to see and no one should ever have to see as a daughter. I have seen things that I never ought to see, and to watch someone fade over time is beyond difficult.” (Rachel)

“It is seeing the journey of someone you love, to see that person not only declining physically but in his being as well.” (Marc)

“First, it is difficult to be with someone that you love, to let that person live her life without living it for her and to let go.” (Joseph)

“It’s scary because you’re watching somebody that you love and have admired, and who’s been huge in your life. And you’re watching him diminish, and [he] knows that he’s diminishing that’s the toughest.” (Elaine)

Living with uncertainty day-to-day

What is it like to be a caregiver?

To watch someone fade away over 20 years is really exhausting and can be…obviously it’s more difficult on the caregiver because you realize that that caregiving is long-term, and you have to deal with that for an extremely long amount of time. So, it’s really hard and sometimes you wonder where the end is, which can be difficult.

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“And I don’t know how many times I’ve walked in there when I don’t know I can put one foot in front of the other, because it’s a yoyo. Every year, I’m told she’s not going to make it. So every year, you get yourself emotionally ready and then she’s out of it.” (Fernanda)

What is it like to be a caregiver?

So, you’re more apprehensive, you’re always looking, always watching. What’s that person going to do that’s coming down here towards us? Are they going to be in the way? Is she going to trip when she was using her cane or whatever. So you’re always, as a caregiver when you’re out looking, me in particular, always looking at what’s going on around you.

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Not something most people choose

“It’s certainly not what I signed on for, that’s for sure.” (Rowdyneko)

“The challenge is that you don’t apply for the job of a caregiver. You do it because it’s sort of thrust upon you, and you do it because you have to, but you’re not trained for it. I mean, there are some things that I do well and there are some things that I don’t do so well.” (David)

"I didn't ask for it; I kind of fell into it and I did as much as I could." (Richard)

Caregivers are...

“Caregivers are tough, and you better believe it. We’re very tough people, we’re fierce, we’re warriors. We fight just as hard as the victim does, if not harder.” (Matsonia)

“I’ve learned that the caregiver is often invisible.” (Shoshana)

“You need to be a problem-solver, need to have a lot of flexibility, need to do things that you never thought you could do. A lot of challenges, but like I say: it’s not something that you apply for. You sort of fall into it and it’s like on the job training but nobody has the manual.” (David)

“It is not easy! I am not telling you that it is easy! I am telling you that it takes patience! A lot of patience! Yeah, sometimes I do, sometimes I don’t, and it is normal.” (Jacques)

“You’re a partner without a partner, or you’re a married widow or widower.” (Richard)

“I’ve been a caregiver, I’ve been a lawyer, I’ve been a banker, I’ve been any number of those hats.” (Drew)

Caregiving is…..

“Being a caregiver, it is 24 hours/day. You cannot sleep, good night sleep I mean. It is like when you have a child with the flu.” (Christiane)

“But I know that in the end, my brothers will all go back and I will be here alone with her, taking care of her again.” (Ginny)

What is it like to be a caregiver?

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Transcript

This is the rest of your life, as well as your spouse’s life, and that makes the decisions you make very different. It’s not, “Okay, I’m going to deal with this for a year and then it’s going to be over.” It’s never over; it only gets worse. As soon as you think you’ve got it stable, the disease goes downhill. There are some things you never get used to. I think people who don’t experience it don’t understand.

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“It’s so hard because you get so, so tired—physically tired, emotionally tired, drained. It’s just, it’s brutal.” (Sheni)

“They (people) have no idea what kind of mess it is to be a caregiver; it’s a mess really to be a caregiver. It’s a real big mess.” (Smiths)

Doing the best you can

"I mean, even if you're perfectly healthy, you have a job, you have a family, you have your own life as well, and you do the best you can… and things won't always be done as fully or as on time as you wish they would have been." (Rhyannan)

What is it like to be a caregiver?

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Transcript

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’s the underlying thing.

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“It doesn’t necessarily have to do with being a caregiver or not, but we are in a context that sometimes we will do things that we might regret later.” (Joseph)

“That you’re never quite the caregiver you want to be. So, I think the hard part is 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.” (Claire)

Loss

“It just takes away everything you expected from life. I think having all your hopes and dreams destroyed, that’s what it is.” (Rowdyneko)

“Losing him. It’s not just about losing your life; you’re losing who they are or what you’ve built your life on. That strength—and he always was such a strong man—and he’s losing, that’s tough.” (Elaine)

“It started becoming really traumatic because the image I had of my dad was this strong, courageous, able-bodied man. He was always out in his garage constructing something, or he was out doing stuff with his friends.” (Kai)

A labour of love

“It’s the greatest gift you can give to another human being. To give yourself, to give your life for another person.” (Matsonia)

“Because being a caregiver, it is also to suffer. It is suffering through love. Being a parent is also suffering a lot, at times.” (Marc)

What is it like to be a caregiver?

I have to be very patient and repeat sometimes four or five times. “Now, do you get this?” “Yes,” but two hours later he’ll ask me the same question again. So, that takes a lot of patience. So it’s not easy. It’s not easy, but it’s a labour of love.

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“Essentially it is a lesson of love. Because if you do not love, you cannot do this. Absolutely not, it is hopeless.” (Jacques)

Enrichment

What is it like to be a caregiver?

I simply believe in the value of caregiving. I think that the experience of caregiving broadens people’s minds and their life’s experience. I mean, I can talk to people and I know they have never been there. They haven’t done that, because they live life at a slightly untouched level, whereas caregivers of adults have a different level of awareness, of what happens in life and death.

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“I think it’s a good feeling, actually, to provide assistance to someone who needs it. And I’ve been the recipient of people helping me from time to time, and so I like to help others too. And it can be a friend just as easily as it could be my mother. So, I think caregiving is an important part of our life and it varies from, like some people caregive to their children for years, and then to their elders.” (Susan)

“There are still lots of things, there’s still lots of life, still lots of joy. It’s just how you look at it, how you go about it and use your window wisely.” (Matsonia)

Review date
2019-09

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