Our aging population will grow to depend on the informal care of family, friends or neighbours. The job is rewarding and demanding and it can be overwhelming. Caregivers who cope (and there are lots of them) are helping the UVic Centre on Aging help caregivers who don't handle the role so well.
SETTLED INTO A GREEN LEATHER RECLINER, 82-year-old Richard Bunbury looks almost as cozy as the butterscotch cocker spaniel sprawled on his raised legs. Several other long-term care residents at the Oak Bay Kiwanis care facility sit on overstuffed chairs or shuffle around the bright sitting area and adjoining sunroom.
As his wife Elaine sits in the loveseat next to him, Richard clutches a yellow ball with blue stars close to his chest. His fingers pulse at it like a heartbeat. Seeing a new visitor, the dog wags its tail and tries to stand. As I squat to make friends, Richard launches the soft ball at me. Elaine, a petite 76-year-old woman with neatly curled sandy blonde hair, immediately apologizes as I catch the ball, laugh and give it back to Richard.
“I throw the ball to him every day,” she explains. “It helps keep him alert.”
Richard murmurs and throws the ball into the middle of the room. A thin woman perched next to Elaine watches it roll into a corner.
“He’s lost words,” says Elaine. “But he still has quite a sense of humour, as you can see. Once I got really frustrated with him for not being able to talk and said, ‘Say something!’ He looked right at me and said, ‘Something.’ ”
Her silver bangles jingle as she clasps Richard’s hand. He looks at her, slightly puzzled.
It’s been just over a year since Elaine moved Richard, who has Alzheimer’s, into long-term care. For 11 years before that, she looked after him at home. As his condition progressed the level of care he needed increased. “It became very difficult,” she says. “He refused to undress, swallow his medication, and get out of the tub. Once when he refused to get out of the tub, I turned on the cold water—that got him out.”
Three mornings a week, home care workers helped Elaine bathe Richard, and the couple’s daughter came over every night to help put her father to bed. When he was still capable, Richard attended a day program so he could socialize and Elaine could catch a break.
“I wouldn’t have coped as long as I did without that assistance, especially the day program,” she says. “Some people find talking helps, but listening to other people’s stories pulled me down. It was enough to cope with what I had. I had to keep thinking positively. I’ve always believed you have to overcome.”
Barbara Warman, 55, rests her numb leg on a cushioned ottoman. Two dogs and four of her seven cats curl up near her. The apartment is warm and smells of bread from the bakery on the ground floor.
A seasoned informal caregiver, Barbara provides care to her husband, who has rheumatoid arthritis, and to her 90-year-old blind mother, who lives down the hall. Barbara also has multiple sclerosis. But it doesn’t seem to impede or complicate her caregiving. “Caregiving gives MS something to take second place to.”
Over the past 15 years, Barbara’s also cared for her dying father, four aging aunts and uncles with varying degrees of dementia, and she’s provided respite care for a cousin’s wife.
Like most caregivers, Barbara tailors her caregiving duties for each recipient’s need and level of independence, which can change over time and from day-to-day. Sometimes caregiving means laundry, grocery shopping, helping with finances, driving, coordinating home support or providing meals. Other times, it involves more intimate challenges, such as bathing or toileting.
Barbara spoke about her experiences at a forum on intergenerational relationships. Jaws dropped as she cheerfully shared stories—like the one about bra shopping with her mother and elderly aunt where the aunt with dementia went one way, her blind mother went the other and Barbara, who was using a walker for her MS, tried to round them up without anyone getting injured or lost.
When asked how she copes, Barb’s brown eyes grow wide and her eyebrows rise in a startled expression. “I don’t know,” she finally says, “you just do it.”
A team of UVic researchers is also searching for answers to that question. It’s the focus of a soon-to-be completed study by the university’s Centre on Aging. The study, “Caregiving: Why Some Cope Well,” funded by the Social Sciences and Humanities Research Council, digs into informal caregiving—unpaid care—by talking to the family, friends, and in some cases, neighbours who provide physical and emotional support to others.
The three-year project involves 91 informal caregivers who help seniors living at home in Greater Victoria, Duncan and Nanaimo. Caregivers were interviewed at the beginning of the study with a follow-up session one year later.
“It was hard to get them in,” says sociologist and principal investigator Neena Chappell, “but once they were here it was like turning on a tap. People don’t usually ask about the caregiver. Even when there are people around, the focus tends to be on the care recipient.”
Chappell, who holds the Canada Research Chair in Social Gerontology, says the study focuses on the positive aspects of caregiving. Existing research tends to concentrate on the stresses and burdens, which creates a bias and draws a picture of burnout. But in her 1995 report, “Informal Caregivers to Adults in British Columbia,” Chappell found that most informal caregivers—91 per cent—feel they manage well.
“All caregivers talk about the stresses and strains,” says Chappell, “But most say, ‘I’m coping very well, thank you very much.’ They may get overwhelmed, but they still want to keep caregiving. So, what can we learn about caregivers coping well under demand to help those who don’t cope as well?”
In the current study, researchers examined coping skills in four categories: burden, stress, self-esteem and life satisfaction. Coping was measured in terms of problem-focussed and emotional-focussed coping. Problem-focussed coping, says Chappell, includes taking assertive action or seeking information to solve problems. Emotion-focussed coping usually involves detachment, denial or unhealthy behaviours—actions aimed at escape over solution.
“Results are still preliminary,” says Chappell. “But the strongest factors suggest psychological characteristics influence how well caregivers cope and who is most at risk. I didn’t expect the psychological factors to be as strong.”
Resilience and neuroticism were the two distinguishing factors—caregivers low in resilience or high in neuroticism had the most trouble coping.
Chappell says resilient people depend on themselves, take things in stride and see themselves as being able to handle difficult times. Neurotic people, she says, tend to be anxious, self-conscious, hostile, worrying and self-pitying.