Sixteen-year-old Samiha Rahman is a normal teenager in most ways. She does well in school, likes talking on the phone, enjoys spending time with her friends. But at the age of 12, Rahman’s life took an unexpected turn: her mother was diagnosed with ALS, the debilitating and eventually fatal condition also known as Lou Gehrig’s disease — and Rahman became one of the estimated 1.25 million Canadians under 25 who are forced to care for an ill or disabled family member.
I met Rahman in November at Hospice Toronto, one of the few Canadian groups that support young carers. When the diagnosis was confirmed in 2011, doctors told Rahman that her mother had a fatal illness and had only four or five years to live. “I just didn’t believe it at first, but then it became real,” she says. “First the limp, then the walker, then the wheelchair, and now she can’t move the wheelchair herself anymore.”
Young carers such as Rahman perform many tasks: they help with personal grooming and household chores, pay bills, attend relatives’ medical appointments, and work to support their families. Canada has the most young carers in the world relative to its population, according to Vivian Stamatopoulos, a sociology instructor at UOIT. “Our numbers far surpass the numbers in the U.K. and Australia,” she adds — but Canada is far behind other developed countries when it comes to supporting this group.
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Stamatopoulos’s research shows that in the U.K., one in 14 young carers has received services — including counselling and skill-building workshops — from a dedicated program. In Canada, that number is one in 1,000. Ontario has only two programs: the Young Carers Program in Toronto, and the Powerhouse Project in Niagara. Together, they have supported more than 1,200 participants through educational workshops, leadership camps, and social activities.
The potential costs of caring for a loved one are numerous: accidental injuries, sleep problems, depression, social isolation, and missed school and work opportunities, to name just a few.
Julia Levey, 16, looks after her nine-year-old brother, who has autism and a severe speech delay. “When he was younger, he would have terrible temper tantrums,” she says. “I would go to school with all those marks on me, and people would ask questions. But now, it’s better — he's starting to talk a bit.” At home, Levey spends most of her time looking after her brother — playing with him, supervising him, changing his diaper. “I am a bit like a second mom,” Levey says, “because my mom works all the time. My dad helps a lot, but he has a night job. There have been times where I wasn’t at school because I was too busy looking after my brother.”
For Rahman, caring for her mother often means missing out on sleepovers, seeing her friends, or going to the movies. “When everyone is going out, I will probably have to come back earlier,” she says. “And you see pictures online of your friends having fun, and you feel so bad.”
Rahman says school staff often lack awareness of the challenges young caregivers face — and that’s a big problem: “It’s really hard to tell my teachers that I am a young carer.” She remembers a time in Grade 9 when her teacher asked whether her mother was planning to cook a big Thanksgiving meal. “You don’t want to be like, ‘My mom has ALS’ in front of the whole class,” she says. “I had to lie and say that my mom was going to cook for us. It would be so much easier if my teachers just knew I was a young carer.”
Census data from Statistics Canada show that 10 per cent of caregivers aged 15 to 29 spend more than 20 hours a week looking after a relative. But their hardships cannot be measured in hours alone, says Grant Charles, associate professor of social work at the University of British Columbia: “Two hours with a person having a psychotic breakdown is very different from two hours getting groceries for a disabled grandparent.”
Still, Rahman and Levey agree that looking after their relatives has its rewards. “Most young carers are people who care for someone they’ve loved their whole life,” Rahman says. Levey adds, “Even with all the negatives, you are sort of proud of being a young carer. If I wasn’t doing this, I wouldn’t be as mature and understanding.”
Success stories from other countries show that the first step in supporting young carers involves raising awareness, including in schools and among health professionals. “In the U.S., the movement came from pediatricians,” Stamatopoulos explains. “If you don’t support young carers when they are younger, they’ll become users of the health-care system.”
Levey has high hopes for the future. “There needs to be more light on the subject,” she says. “I just want people to know that it should be bigger than it is now. There should be a young carers program in every single school. And teachers should be involved.”
Nicholas Chadi is a pediatrician and a fellow in global journalism at the University of Toronto’s Munk School of Global Affairs.