Caring for their mother, who had dementia, forever changed the lives of Edmonton sisters Elise and Sarah Chamberland.
“I wasn’t really focused on my own life because I was thinking about all the work I had to do for her, and also thinking, ‘I don’t have a lot of time left with her,’ ” Elise Chamberland said.
“It impacts every aspect of your life.”
One in four Canadians aged 15 to 19 helps someone with challenges resulting from illness, disability or aging, according to University of Alberta researchers. Most are in school, and 60 per cent of young caregivers also work.
While 47 per cent of young caregivers spend less than two hours per week providing care, four per cent provide care 11 to 20 hours per week and six per cent spend more than 21 hours a week helping someone else. The average is six hours per week.
Prof. Janet Fast and her team in the Department of Human Ecology analyzed data from a 2012 Statistics Canada survey of caregivers. Their study was published Tuesday on the U of A’s
Research and Aging Policies and Practice website.
Carrie Chamberland’s family describes her as a fun and loving person who enjoyed being with others. She died June 12, 2019. (Elise Chamberland)
Many of them start early,” Fast said. “Many of them care for a very long time, and they move in and out of caregiving episodes across their entire life course.”
The Chamberland sisters — Elise, now 31, and Sarah, now 28 — cared for their mother Carrie for about 10 years until she died in June at age 58.
“She was always in the back of my mind. Every decision I made, everything I did,” Sarah said.
With the help of their father, Claude, Elise and Sarah looked after every detail of Carrie’s life.
“Near the end, we were standing outside the shower, reminding her of what she had to do,” Elise said.
The research by Fast and her team shows that young caregivers’ education, health, relationships and paid jobs are all affected by their added responsibilities.
Caregiving came at a cost for the Chamberland sisters.
“My career took a completely different trajectory because of it all,” said Elise, who quit her studies in architecture to move back to Edmonton when her mother’s symptoms worsened.
Sarah delayed purchasing a home for years and worried about the emotional and financial impacts of her decision.
“There was a lot of guilt involved,” she said. “It was kind of risky because I always feared that one day I would maybe have to stop working because I needed to be a full-time caregiver.”
Elise and Sarah’s caregiving journey became more complicated three years ago when their father was diagnosed with cancer.
I always feared that one day I would maybe have to stop working because I needed to be a full-time caregiver. – Sarah Chamberland
The sisters cared for both parents for a six-month period.
“It’s hard to believe we even survived it, to be honest, because it was awful,” said Sarah, who took a leave from her nursing career during that time.
Elise was finishing up her studies in social work and quit her part-time job to dedicate more time to her parents.
Claude Chamberland recovered from his cancer and is in remission.
Travelling with Carrie was a challenge when her Alzheimer’s disease symptoms worsened, but Elise and Sarah say they treasure those memories. (Elise Chamberland)
Those types of sacrifices are common for caregivers, and those who start their caregiving careers early face cumulative effects, Fast said.
Young caregivers who were surveyed by Statistics Canada reported having difficulty concentrating in school and less time for studying, putting their future job prospects at risk.
“They may not have an opportunity to get into post-secondary education, which will impact their employability,” Fast said.
“That can have repercussions for their entire life course.”
‘Stressed and anxious’
Caregiving also affects young people’s personal development, research shows, because their time and energy are focused elsewhere.
“Social life was difficult because you have to be able to be home at certain times and you’re tired,” Elise said.
“It’s hard to build a relationship because you don’t have a lot of time. Your priorities are a little bit different.”
One in three young caregivers reported feeling overwhelmed, a reality that is also well-documented in the general caregiving population.
“Most people are in the workforce, attempting to manage this role,” said Johnna Lowther, provincial program lead with Caregivers Alberta, an organization that supports and educates caregivers.
“They report feeling stressed and anxious, they report feeling isolated.”
There are close to one million caregivers in Alberta. They spend an average of nine hours a week looking after others, according to another analysis by the U of A research team.
Support can make difference
Caregivers play a crucial role in society, Lowther said.
Other research from Fast and her team shows caregivers save the Alberta health-care system an estimated $ 5.8 billion each year.
“They’re not accessing emergency care, they’re not going to the doctor as much,” she said. “They’re putting off going into [a] long-term care setting or supported living.”
Caregivers need more access to respite care and financial support to help loved ones while staying in the workforce, said Lowther.
“It would be great to see some government financial assistance that supports the labour hours of that caregiving role.”
Looking back, Sarah and Elise Chamberland believe financial help could have helped them take better care of their mother.
“To have that financial backing would have meant that I could have focused solely on her,” Elise said.
“It would have taken the stress out of it,” added Sarah.
Despite the challenges, the sisters wouldn’t hesitate to do it all over again.
“Not a lot of people get to experience the closeness that we got with our mom,” Sarah said, adding it was a blessing to be able to spend the time with her.
“It feels nice to be able to care for someone who cared for you when you were little,” added Elise. “It came full circle.”
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