by Julia Ritchie
While Eleanor McAllister* may be retired, her days aren’t filled with rest and relaxation. Ever since her husband Victor’s dementia diagnosis five years ago, she’s taken on a much more demanding role – the role of a caregiver.
Eleanor, 77, is just one of the many caregivers in Canada caring for a loved one with dementia, a degenerative disease that causes memory loss, confusion and behavioural changes. As Canada’s population continues to age, an increased number of dementia patients will need informal caregivers like family and friends to help them perform their daily activities.
“It’s just like taking care of a child,” Eleanor says about caring for her husband. “You have to do everything for him.”
These demands can take a large toll on caregivers who don’t have professional training in providing high levels of care. According to the Canadian Mental Health Association, eight in 10 people experience difficulties as a result of caregiving, which can often turn into caregiver burden.
Caregiver burden is the harm to a caregiver’s emotional or physical health, social life or financial status as a result of the demands of caregiving. This impact can take place through denial of the illness, social withdrawal, depression, anxiety, exhaustion, sleeplessness or other health problems.
Eleanor is no stranger to the stresses that come with caregiving. She initially struggled to accept her husband’s condition and her role as a caregiver, and has had to help her husband with an increasing number of tasks, like bathing and dressing, as his dementia progresses.
“It’s very, very important to me that he’s groomed,” Eleanor says. “If I didn’t do all of this, he wouldn’t think to do his teeth, or hair or anything like that.”
“It was hard for me in the beginning. It was extremely hard doing that,” she says of completing tasks like brushing her husband’s teeth. “I just put rubber gloves on and just closed my eyes and did it.”
“But I just do it now. I just do it,” Eleanor says.
According to a study by CY Chiao, HS Wu and CY Hsaio, spousal caregivers tend to experience higher physical levels of burden and have more health problems because they are with the person they’re caring for at all times and end up neglecting their own health issues.
Eleanor is also with her husband at all times, as he has come to depend on her not only to help him with his daily tasks, but also as a source of familiarity and comfort.
“I’ll turn around and he’s right there behind me,” Eleanor says. “He has to know where I am at all times.”
“Saturdays when he’s home is a huge challenge because it’s a day I do everything,” Eleanor says. “It’s just extremely hard to keep him occupied. I’ll put in a nice video for him that he likes, but he gets up and down and is at my back. It’s just sometimes I don’t know what to do with him.”
Because she spends all of her time caring for her husband, Eleanor has encountered some social withdrawal in not being able to visit friends or go out with her husband to do simple errands like grocery shopping.
This high demand of care has also led to Eleanor experiencing exhaustion in trying to keep her husband occupied.
“If I’m sleep deprived, then I get very anxious and very agitated,” Eleanor says. “Not angry with Victor, for sure, because it’s not his fault that I’m tired. But I’ll just think, ‘Oh honey, please just sit still for an hour. Just let me do my thing.’”
“And we do. By God’s grace, I do,” she says.
One thing that has made a significant difference in Eleanor’s life is her involvement with the McCormick Day Program.
Victor attends the program five days a week, allowing Eleanor to have some time to herself to do daily errands and have some rare time alone.
“This program to me is just like a godsend. It truly is,” she says.
Victor’s enrolment in the day program also allows Eleanor to attend the McCormick Spousal Support Group twice a month, where she has made new connections with other members through their shared experience.
“It’s good because it’s a group of people who sit around in a circle and talk about their spouses,” Eleanor says. “I’m not much of a talker in these groups. I sort of listen to what other people are saying. The odd time I’ll say something, but it’s just helpful to me to hear what other people are experiencing.”
“Coming here five days a week, it’s just a godsend,” Eleanor says. “Without this program, I don’t know where I would be. I honestly don’t. I’d have to have someone in there with me because I really couldn’t take care of him by myself.”
Julia Ritchie is a recent graduate of the Master of Media in Journalism Communication program at Western University. Please note that the names have been changed for privacy reasons.