Alberta’s unpaid caregivers didn’t plan to become the main caregivers for their family members or friends. It just happened. Just as you don’t plan for a child with disabilities, a parent with dementia or a spouse with cancer, family caregivers didn’t really have a choice. And, most of them don’t recognize themselves as caregivers or seek support or resources to ease their burden.
Nancy didn’t plan to fall in love with a man who would have lifelong issues with multiple sclerosis. But, their 30-year marriage – which gave rise to four children – has dominated her life.
“I haven’t ever thought of myself as a caregiver,” she says. “I’ve just been taking care of my husband while I’ve run our home and raised our kids.”
Also working part-time as a nurse, Nancy says her life is about planning and just getting through the day, every day. There’s little room for holidays and leisure time, space for herself or the pursuit of other interests. “We haven’t really ever gone very far from home as a family, or even as a couple now that the kids are older,” says Nancy. “And, that got even harder when my husband was diagnosed with cancer a few years back.”
1 in 4 Albertans are family caregivers
Right now, a million people in our province are caring for a family member or friend – without compensation – while juggling work, facing out-of-pocket expenses and financial pressures, and trying to overcome the mental, emotional and physical toll that comes with caregiving.
If you ask Nancy, she says she’s fine – happy even. But the lines on her face tell a different story: one of exhaustion and a lifetime of putting the care of everyone else ahead of herself.
“The vast majority of our caregiver clients are experiencing significant burnout by the time they reach out to us,” says Johnna Lowther, director of programs and services at Caregivers Alberta. “They take care of their family member or friend while their own well-being slowly erodes.”
Caring for caregivers
While the vast majority of Alberta’s family caregivers go-it alone, there are resources available. There is condition-specific support through organizations like the Alzheimer’s or autism societies.
And there’s also Caregivers Alberta, a non-profit that offers free programs to caregivers. These include one-on-one coaching, topic-specific education sessions, help finding resources, a workshop series called COMPASS for the Caregiver, and peer support groups.
“The first time I went to the Caregivers Alberta Writers’ Circle, I couldn’t believe that there were other people out there like me, sharing journal entries that could be my exact words,” Nancy says. “It changed my life. Now, I have some home care in place, I’ve started meeting a friend for coffee, and I’m even going away for a weekend with my daughter.”
Nancy says being part of the wider caregiver community has allowed her to give herself permission to come first – at least every now and then.