Looking after loved ones late in life can be strenuous, report finds
“Code Grey” is one in a series of stories in The Lake Report about health care in Niagara Region. In hospital parlance, “Code Grey” means loss of essential service.
With a large population of seniors, Niagara-on-the-Lake is naturally home to many community caregivers.
Steven Hall is just one of many residents who has taken care of an older family member, serving as the primary caregiver for his father, Bruce Hall, before his death in May.
His dad had dementia and started showing symptoms after undergoing anesthesia — rapidly accelerating his need for care.
“He went from no needs at all to 100 per cent,” Steven Hall told The Lake Report.
He recalled a time when he and his wife Glenda went away for a weekend and left Bruce with a barbecue chicken in a plastic container.
After a phone call from his father, Hall returned home to find the plastic container partly melted in the oven.
“That’s when we knew that we couldn’t leave him alone unless we went for groceries or wherever — and eventually that evaporated, too,” he said.
With his brother still working and his wife slowed after surgery a few years ago, most of the burden of being a personal support worker for his dad fell to Hall.
His story is not unlike that of many caregivers across the province.
The 2023 Spotlight Report by the Ontario Caregiver Association found that two in five caregivers are looking after their parents or in-laws.
And caregivers are most commonly supporting someone over the age of 65 with a condition related to aging, such as physical and mobility issues, dementia or Alzheimer’s and cardiovascular issues.
Amy Coupal, the organization’s CEO, said this year’s report — which compiled statistics from 2019 to 2023 — looked at how things evolved over the prior five years for caregivers across the province.
“What we saw was pretty striking in terms of burnout,” Coupal said in an interview.
The report found that an alarming 67 per cent of caregivers said they had reached their breaking point over the previous year but had to keep going.
The majority of caregivers were balancing work and caring as 73 per cent said they worried about being unable to handle all their caregiving responsibilities going forward.
“We’ve got caregivers feeling pressure from multiple angles,” Coupal said.
Hall was retired while caring for his dad, but still encountered feelings of burnout.
Living on a farm about three kilometres west of Penner’s Home Hardware, Hall said there was not much to do in terms of self-care nor the time to plan a project or hobby.
“When you’re up at 6:30 and your day isn’t done until around 7:30 or 8, you can’t get a lot done,” he said.
When it comes to mitigating burnout, Hall said understanding when to take a break is key.
He recalled the advice he received years ago when he was a young father taking prenatal training.
“They tell you to take a break when you can, take a nap when the baby naps. You won’t be able to go, go, go. Eventually, you’ll break down and you’ll stop.”
Hall said that he took this lesson with him when he was caring for his dad, though it was extremely hard at times.
“I begrudgingly accepted the fact that it was OK to do one important thing and not do another semi-important job and leave it for later,” he said.
Coupal echoed this sentiment when asked what caregivers can do to improve their mental health.
“I think what caregivers of any age want is to be able to balance their caregiving commitments with all of their other priorities, so that has to be their own health as well,” she said.
Based on personal experience, as a caregiver for her brother, her mother and her father at different stages of her life, an important lesson was realizing that being a caregiver was part of her personal identity, she said.
“It’s an additional role that I play in my life. I have a job, I have kids, I have all of these pieces, but part of my identity is about being a caregiver,” she said.
Keeping this in mind, she was able to reach out for external help and make sure that she had the support she needed.
In a similar vein, Hall began utilizing the NOTL Palliative Care agency toward the end of his father’s life and hopes to attend occasional bi-monthly meetings to share experiences with other caregivers.
Executive director Bonnie Bagnulo said when caregivers come to palliative care they’re often physically and emotionally exhausted — and need support.
“This is a job they did not sign up for,” she said.
“There is no formal training and the only reward known is knowing that at the end of the day, every moment spent caring for their loved one will bring them a thousand sacred moments,” she told The Lake Report.
Bagnulo added that the most important thing palliative care can offer caregivers is a place to be heard.
- For additional support, Coupal urged caregivers to check out the Ontario Caregiver Association’s 24/7 helpline and other resources available through OntarioCaregiver.ca.
