Caregivers come from all walks of life but they share one common goal- taking care of someone they love who cannot fully take care of themselves. This may mean helping them eat, shower, take their medicine, or even go to the bathroom.
Caregivers are untrained, unpaid, and too often unsupported.
“Caregivers are often invisible in the health-care system, with their contributions going unrecognized as well as unrewarded.”
28% of all Canadians aged 15 or older are a caregiver.
Most love their job simply because they love the loved one they’re taking care of. But nonetheless, a Canadian survey by Pollara Strategic Insights of 800 caregivers aged 16 and older showed-
- 61% adopted the role because they had no choice, or didn’t think they had a choice
- ~50% feel it negatively impacted their personal life
- 36% have gone through periods of depression
- 33% have felt resentful of their role at times
- 33% struggle with finances due to their role
- 8% lost their job because of their role
It’s clear something needs to change.
Stephane’s Story
Stephane Alexis is 25 years old. His younger brother, Torrence, who is 22, has cerebral palsy. Torrence is completely dependent on Stephane and his parents for care. He is nonverbal and needs assistance eating, getting dressed, and even rolling onto his side.
Stephane loves his brother, but being one of his primary caregivers has taken a toll on him. It inhibits his ability to socialize for one, but perhaps more significantly, it has made him feel constrained to his childhood home. Stephane doesn’t feel like he can move out, placing all of the burden onto his parents.
While his family does receive 15 hours of help a week from social services, it doesn’t make much of a dent in their daily routine. Unfortunately, there isn’t much funding out there for at-home care and while there are publicly funded residences, Stephane doesn’t believe that would be the best choice for his brother.
The family is left to figure things out on their own.
Don’s Story
Don Manhood was a caregiver of his wife, whom he had been married to for over 50 years. She was diagnosed with Alzheimer’s disease. He took care of her 24-7, brushing her teeth, dressing her, and bathing her. He had no free time to keep up with his friends let alone his hobbies. It came to the point where his only real communication was with others going through the same thing. Support groups are what helped him make it through.
“I would never have survived if I hadn’t belonged to support groups. That really saved my life in a sense.”
He cared for her for 6 years before she moved into a facility.
So what can we do to improve the situation?
Simply put, we can care more for the caregiver. This starts by paying more attention to them and their needs.
Sometimes it’s not even about creating new services, it’s just about ensuring caregivers have access to the services that are already out there.
We can’t keep ignoring those taking on this task. Yes, they do it because they’re filled with love for who they’re caring for. But it’s hard. And we need to start addressing that and providing more support.
You can read more about this take on caregivers here.