While many caregivers find their role rewarding, half say that they feel mental strain as a result of their caregiving. For Mental Health Week, we collaborated with Ontario caregivers to release the Caring for the Mental Health of Caregivers Wishlist, a six-point guide for healthcare partners to better support caregivers.

At the Ontario Caregiver Organization, we know that patients thrive when their caregivers are informed, trained and able to provide the best care they can. We sat down with caregiver and advocate Carole Ann Alloway, who originated the idea for a wishlist, to dig deeper into the wishlist and what it means. In this interview, she talks about her journey as a caregiver, and what healthcare professionals and everyday people can do to support caregivers’ mental health.

What was the start of your journey from caregiver to advocate?

I’m a caregiver for my husband. In 2010 he was given an ankle replacement, but within two weeks it was infected, so they had to do another operation to take it out. Over a period of 5 years he had nine operations, with the last operation to fuse his ankle because of an unresolved, recurring infection.

When did you realize that your caregiving was putting strain on your own mental health?

Yah I knew that there was something wrong about year three, because I was really quick to get angry, which is just not like me. And I was going in the bathroom and crying a lot, also not like me. So I knew that that was a problem, but you’re just so busy with caregiving duties that I didn’t pay attention to it.

Once you identified that you were in distress, how did you manage through?

You just kind of pull yourself together, there isn’t anyone else to do it. So you have your cry in the bathroom. I couldn’t share it with Bill because he was the patient, he was in pain and I didn’t want to add to his burden. So I kept it to myself.

It wasn’t until year five, after the last operation, that I saw a psychiatrist. And he told me that my brain was exhausted. And as soon as he said that I realized that that was right, that I wasn’t going crazy. So I wish that I had gotten that support sooner.

Where did the idea for the Caring for the Mental Health of Caregivers Wishlist come from?

After I was diagnosed with depression I was so angry. Because I think of myself as a strong person and my kids would tell you I’m a strong person. But it felt like a failure and that was really hard to take. I’m not much for feeling sorry for myself, and I thought: “what could have happened differently that would have prevented me from getting into this position?” Because if there’s me, there must be more people out there dealing with the same challenges.

So I started writing down all the things that could have happened differently if my role had been recognized, if I’d been heard. And I shared that with the Change Foundation to create a general caregiver wishlist, and now I’m working with the Ontario Caregiver Organization to create one that specifically focuses on the mental health of caregivers.

Why is the mental health of caregivers important?

If you don’t ask the caregiver if they’re ready, willing and able to take on this role, and they just take it on, how good a job is the caregiver doing? We all want the best health outcome for the patient. So if we prepare the caregiver for the role with education, training, support, then the patient should recover that much quicker and better, and not return to the emergency department as often or at all.

What is the biggest challenge for caregivers in managing their mental health?

Giving yourself permission to take the time you need. We talk about respite care, but I never took it, I didn’t even know it was available. So healthcare professionals, when they’re talking to the caregiver about taking care of themselves, they should be saying that you need to take one weekend a month for yourself. Because you can’t look after the patient if your batteries are drained.

We need to give permission to the caregiver to look after themselves, especially their mental health. It’s not selfish, it’s not a nice-to-have. It’s something you absolutely need to do if you’re going to be your best for the patient. So somebody has to give them permission. It’s like a prescription, a social prescription, for the caregiver.

What about everyday people like family, friends and neighbours? How can they support caregivers and their mental health?

I think we need to raise awareness, which we’re doing, about who caregivers are. Five years ago “caregiver” was not a word that was said, but now it’s becoming much more noticed and used. If one in four people is a caregiver, everyone knows at least one.

One of the things I heard a lot was “let me know if you need anything.” But caregivers are so overwhelmed. You’re just going going going all the time. So to sit back and think about what this person could do for me is just mentally too hard a leap.

So people who want to help should phone the caregiver and say “I’m going grocery shopping, tell me what you need and I’ll drop it off.” “I’m making a meal for you, are there any allergies or dietary restrictions that I need to think about? I’m going to drop that off later.” “I heard that your dog needs to go to the vet, I’m happy to take it.”

Those kinds of proactive things that, if you think about your own life, I think you can come up with a lot of suggestions. And you know the caregiver, so you know what they need.

What would you like to see healthcare partners doing to support the mental health of caregivers?

I’d like to see healthcare professionals get more education on caregivers and their role. I would love for every healthcare professional to see a caregiver’s story so that they can understand from the caregiver’s point of view what they’re dealing with. So that they can be a little more compassionate and understanding instead of rushing to finish their job.

In a quiet and calm way, ask caregivers how they’re coping with what’s happening. But I think healthcare professionals are afraid to ask that question because they don’t know where to get resources for what to do if the caregiver breaks down and starts crying and says “I can’t handle this I don’t know what I’m doing.” But there are resources available, and it can be as easy as telling a caregiver about the Ontario Caregiver Organization so they can find the help they need.

So we need to get those pieces in place, that’s why I think educating healthcare professionals is so important.

There’s a lot of discussion about the caregiver role, about the future, among healthcare providers and partners right now. How can caregivers get involved in those discussions?

I would encourage them to get help, first of all. Have someone to talk to, a professional. And if they really want to get involved, I would encourage them to send their story to the Ontario Caregiver Organization, because those folks are all working hard with patients and caregivers to improve the system.

Thanks so much for joining us, Carole Ann. And for championing the Caring for the Mental Health of Caregivers Wishlist.

My pleasure, thanks for having me.