Invisible caregivers: 12 per cent of youth provide primary care for a family member, UBC study finds


By Yvonne Zacharias, Vancouver Sun December 5, 2012

Photograph by: Steve Bosch , Steve Bosch

Life started to change for Kai Bighorn in Grade 10 when a nurse took him aside in school and told him his father had suffered a heart attack and he needed to get to the hospital right away.

The half-hour drive to the nearest hospital in the Cowichan Valley seemed to take hours. As the miles inched past, so many scary scenarios flooded his mind. Would his father make it? What would his life be like if he did?

His father, Jacob, had coped with Type II diabetes since he was diagnosed when Kai was one. But lately, there had been a few warning signs. For one, his father had started to retain fluid in his legs. At the hospital, there was more disturbing news: Jacob had suffered several silent heart attacks.

It was the year 2000, and Kai was about to enter the ranks of a largely invisible group in Canada known as young caregivers.

University of British Columbia social work professor Grant Charles, who led a study of this largely silent group, went into one Vancouver high school and found that 12 per cent of students were providing primary care for a family member.

At a time when their peers are partying, listening to music and, more importantly, learning to connect socially, young caregivers are largely living in isolation, not wanting the outside world to know what is going on inside their home and fearing what will happen if the authorities get wind of their challenges and decide to remove them from their homes.

Apart from the high number, Charles was surprised by other findings in the study, written with fellow UBC social work professors Tim Stainton and Sheila Marshall, and published this year through the Vanier Institute of the Family.

When it came to this population, for example, there was no measurable difference between boys and girls, between immigrants and non-immigrants; socio-economic status seemed irrelevant.

It’s difficult to say whether the numbers are growing, Charles said, but he noted that as families grow smaller, more responsibilities tend to be placed on fewer members.

Charles believes it’s time for Canada to pay closer attention to this group of young adults, who are often shaped for life by being thrust into caregiving roles so early on. At the very least, he feels they deserve recognition for their economic contribution.

While there is no figure for Canada, estimates in Australia — which has a population two-thirds the size of Canada’s — suggest the labour of young caregivers saves the health and social care systems more than $18 billion annually.

The UBC study calls for a multi-layered approach to young caregivers that does not isolate young people from their families but supports them in their roles, while recognizing their needs.


Bighorn, now 28, applauds this. He knows firsthand the toll being a young caregiver can take. As his father’s health deteriorated, he found himself taking refuge in his room. He started smoking cigarettes and lived on a diet of junk food, between frequent trips with his mother to the hospital.

“We would care so much about his health and about his well-being, but we didn’t care about our own health,” he said, adding he’s since given up both vices.

His father’s health crisis built like an unpredictable crescendo with jagged peaks. One of those peaks was reached in 2005 when Jacob’s kidneys started shutting down.

“Dialysis became a new word in our vocabulary,” said Kai, who took a weeklong course with his mother on administering dialysis, including what to do in emergencies.

From that point on, they were responsible for making sure the dialysis was administered properly while coping with Jacob’s sometimes cranky moods. They had to sort through 60 to 70 boxes of medical supplies that were shipped to the house every six to eight weeks. They had to move to a new home, better-suited to Jacob’s challenges.

There were a number of medical setbacks. Jacob twisted his ankle. It never properly healed, restricting his mobility.

By the time Kai was 24, he had taken over responsibility for evening dialysis treatments, blood pressure monitoring and insulin injections. The numbers were just too difficult for his father to see.

“We could never really leave him alone at that point.”

On one trip to the hospital, Jacob scraped his body. The infection turned into gangrene that never would heal.

By this point, Kai had quit one of two jobs and been fired from the other. Looking after his father and holding down a job was just too much.

The father-son story of Jacob and Kai started its final chapter when the family got word, toward the end of the summer of 2008, that Jacob had a choice to make. He could have his infected leg cut off or he could go off dialysis, which meant he would die within weeks. After prayers, meditations and talks with family, he chose the latter.

In his final days, Jacob was moved into a hospice in Victoria. He faded quickly.

At 10:45 a.m. on Oct. 4, a group of 11 eagles started circling in the sky over the hospice. At 10:50 a.m., the father whom Kai had so lovingly cared for was gone.

Health care workers saw the eagles as an omen. So did Kai. He believes they were there to give comfort to him and his family, to tell them that Jacob had gone to a better place.

Today, as he sits in the living room of the apartment he shares with his sister in Vancouver, Kai reflects on how his father’s illness shaped him.

Close extended family circles have always been a part of his First Nations heritage. Looking around him at the kids’ toys and hearing their laughter spill out from another room, he’s grateful for the deeper appreciation of family that his experience with his father gave him.

He’s grateful for the hours he got to spend in the company of his dad while administering dialysis. It drew them closer. They talked about everything from marriage to fatherhood, all those things his father wouldn’t be around to experience with his son.

On the down side, Kai “pushed a lot down just to cope with it.” He also missed out on a typical teenage life. “I do feel I am socially awkward.”

He was helped, however, by the formation of a support group in the Cowichan Valley in 2010 that brought together a group of current and former youth caregivers. “I think a big stress was taken off my shoulders when I found out there was more than one person in my own community that had gone through the same thing.”

In his research with adults who had been young caregivers, Charles found a common theme: almost all of them talked about a lost childhood. And almost all had gone through the experience in isolation.

He said there is very little recognition of this group in Canada compared with Britain, which has been developing a support system for about 20 years.

The school system in Canada is just one example of where this group’s needs tend to go unrecognized. Often they arrive in class struggling to get by on little sleep and dogged by worry about a needy parent or sibling at home.

“Because many of them are not acting out, with all the struggles that schools have today, these kids aren’t the priority,” Charles said. Keeping weird hours or falling asleep in class is often dismissed as typical teenage behaviour.

Kai isn’t bitter about what he went through, nor does he regret it. It cost him but it gave him riches, too.

There are so many ways that governments and society could help this largely silent group, such as respite care, academic support and advocacy.

But, said Bighorn, “if we could be granted only one thing, I would say it would have to be recognition.”

As a foot note to this article, we are proud of our “Caregiving Heroes” program that recognizes young caregivers.  Read our stories about our young Caregiver Heroes – they are amazing!

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