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Illustrations By Julia Breckenreid

How to avoid caregiver burnout

Feeling overwhelmed? Here are five ways to care for yourself while you’re caring for others

When Carole Ann Alloway’s husband, Bill, went into hospital for ankle surgery, doctors told him he’d need about three months to recover. That three months stretched into five years, nine operations and multiple infections—and Carole Ann suddenly found herself thrust into the role of long-term caregiver.

It wasn’t just that she took over all the household duties in their Toronto home, like the laundry and cleaning jobs that they both used to share. Her days were also filled with tasks she’d never anticipated in their life together, from cleaning her husband’s wounds to changing his IV bag. “It was a 24/7 job,” she says. “Even in the middle of the night, I’d be up giving him his pain pills. It was hard mentally, too, because I was juggling medications and doing research trying to figure out what could be causing all the infections.”

Partway through the third year, she felt so overwhelmed that she wasn’t sure how much longer she could cope. “I knew there was something wrong, because I’d go into the bathroom to cry,” she says. “I spent most days either angry or crying.”

A report from Health Quality Ontario says that one-third of caregivers looking after people needing long-term care at home suffer from distress, anger or depression. Fortunately, there are steps you can take to help see you through. Here are five ways to take care of yourself when you’re taking care of someone else.

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1. Know the warning signs

People often wait until they’re burnt out to ask for help, but reaching out earlier is much more effective, says Christa Haanstra, executive lead of strategic communications at The Change Foundation, an independent health policy think tank. She says it’s important to watch for signs you might be struggling.

“If you develop physical symptoms like chest pain, weight gain or headaches, that’s certainly a concern,” adds Dr. Joshua Tepper, CEO of Health Quality Ontario. “And then there are emotional symptoms: Is your energy low, are you sleeping, do you have symptoms of depression or anxiety?” Unhealthy coping mechanisms—you regularly decide you need an extra glass of wine to recover from the day, for instance—are also a strong hint that it’s time to ask for help.

2. Start talking

“The first thing I encourage people who are overwhelmed to do is to talk about it,” says Pauline Tardif, CEO of the Alzheimer Society of Canada. One of the best ways to find people who will get what you’re going through is to join a peer support group—you can find them through organizations that help people with specific diseases, like the Canadian Cancer Society, Diabetes Canada or the Alzheimer Society, or on websites like Caregiver Exchange.

If just the thought of finding time to attend meetings stresses you out, there are options designed to work with caregivers’ needs. For example, some Alzheimer organizations offer programs where caregivers meet in one room while patients meet in another. Many support groups are also online, which is a great way to connect on your own schedule.

3. Fight for your role on the health-care team

A lot of caregivers worry that they’re not capable of taking on some of the medical tasks required of them. “It comes down to feeling equipped and informed and being part of the decision-making, versus just being told what’s going to happen,” says Haanstra. That’s why it’s so important to advocate for yourself as a key part of the medical team. Accompany your friend or family member to medical appointments, and if they’re being discharged from the hospital, push for a conversation about exactly what needs to be done at home and what kind of support you’ll need.

4. Take care of your health

Caregiving stresses both body and mind, and caregivers tend to ignore their own needs, Tepper says. “Unfortunately, I’ve had many patients come in who have been looking after a loved one and they’ve ignored an issue of their own that’s fairly severe,” he says. “I’ve seen people ignore chest pain, or a mass, or headaches, or low mood.” Don’t neglect your own health—and pay a visit to your primary care provider at the first sign something seems off.

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5. Book time off

“I think the hardest thing for caregivers is realizing that it’s okay—and necessary—to ask for extra help,” says Tardif. For many people, that means actually booking time for a break, whether it’s every day, every week, or a longer vacation. “Through exercise, reading, meditation or mindfulness, people should make a conscious effort to develop the resilience to deal with the physical and emotional task of caregiving,” he says. You may need to carve out that time by signing the person you’re caring for up for a regular day program or overnight respite, and consider advocating for more government-funded home-care hours.

Carole Ann also recommends accepting offers to help from friends and family members. “If I had to do this again, I would have asked people, ‘Would you mind coming over and sitting with Bill, because I need to go to a movie,’ or I would have asked one of my kids to come stay with me on the weekend, so I could just sleep for 48 hours,” she says.

Even after Bill’s health finally started to improve, Carole Ann had trouble shaking the dark feelings she’d had for so long. Eventually, she saw a psychiatrist. “Now, I feel able to tackle things,” she says. “I feel like myself again.”