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Invisible angels: Young people caring for their family members go mostly unseen

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Invisible angels

Most kids their age would be involved in after-school activities or hanging out at the mall. These adolescents, however, go home to look after a family member with a physical or mental disability. Their contributions are largely unheralded, Elizabeth Renzetti writes, and many have complex needs of their own

Andrew, left and Abbigail Wright-Gourlay, 14-year-old twins from St. Catharines, hang out after school on Oct. 16, 2017. Abbigail helps her brother cope with the challenges of Tourette syndrome and a mood disorder.

Abbigail Wright-Gourlay's life is different from the average 14-year-old's. She babysits and has a paper route, two things that are common enough for a teenager. On top of those jobs, though, she has another, much less visible one: She is a caregiver to her twin brother, Andrew.

"I do extra chores, and I do things for Andrew," says Abbigail, who has a small stud in her nose and short, stylish purple hair. She's sitting in the family living room in St. Catharines, Ont., that has a telescope for her in one corner, and a swing for Andrew in another.

"I think I do more chores," mutters Andrew, a slim and energetic boy who loves gardening. To hear the siblings gently bicker, you'd think this could be any family, anywhere. But Andrew was diagnosed at age five with Tourette syndrome and more recently with disruptive mood dysregulation disorder, both of which cause him to have vocal outbursts. The swing in the corner gives him an outlet for his energy.

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Andrew's behaviour can be erratic, and family life revolves around his condition. This means that Abbigail is a young carer – one of a legion of nearly invisible, largely unresearched, almost entirely unsupported children and young adults who provide care for a sibling, parent or grandparent in the home.

Figures are hard to come by, but the number of young people between the ages of five and 25 in Canada caring for a relative with a physical or mental disability is likely more than a million. All of those young carers have complex social and emotional needs of their own that are, at the moment, almost certainly not being met.

Abbigail's work consists of supporting her brother – reminding him to take medication, writing out his schoolwork (he has difficulty with handwriting), fending off bullies and keeping an eye on him so their parents, Stephanie and Scott, can get a break. As she said in a recent video about young carers: "I worry about him when he's with me, and I worry about him when he's not with me."

Abbigail is an award-winning student who does well in her Grade 9 classes. But any extracurricular activities she might pursue, such as the school art club she was interested in, are out of the question. When asked if she held any resentment toward her family for her responsibilities, she looked puzzled. "What does that word mean?"

The issue of home caregiving is largely off the public radar, especially when one of the caregivers is a child. "I sometimes say that I have two invisible children," Stephanie Wright says. "I have a son with mental-health issues, who people don't understand. And I have a young carer, and people don't understand her challenges. It's every day for Abbigail. It's her life."

Hana Hussein, 20, helps out her father, who lost his legs as a result of diabetes.

That's a familiar scenario for Hana Hussein, who also lives in St. Catharines and is also a young carer. During elementary and high school, Hana, now 20, was restricted to clubs that took place during lunch hour, because she was needed at home before school, and after as well. When Hana was nine, her father lost both legs to diabetes and for the past 11 years, she has helped him perform tasks that make his life easier.

When she was younger, her hands were covered in blisters from tightening her father's prostheses. More recently, her mother suffered a heart attack.

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Hana, who studies environmental technology at Niagara College and is the youngest of four children, is also the family's Arabic-English translator, accompanying her parents to medical appointments. But she, too, shrugs off the idea that being a young carer is a burden.

"I can never say anything bad about this, because it's how I was taught when I was growing up. It really helped shaped me," Hana says. "I knew things that most nine-year-olds wouldn't know, like what insulin is and how to inject it. It's made me more mature."

These conflicting emotions – feeling largely isolated and invisible while also being proud of keeping the family aloft – are common to young carers, according to Heather Chalmers, one of the few academics in the country who studies them.

"They're proud of their independence and maturity," says Chalmers, an assistant professor in the Department of Child and Youth Studies at Brock University in St. Catharines. "A lot of them said to me: 'When I go off to college I know how to do laundry, I know how to cook, I can take of myself. I'll be better off than my peers.' And they should be proud of that."

However, this independence can also contribute to the way young carers are hidden in plain sight: Afraid of being seen as different from their peers, or being removed from their home where they're caring for an adult with mental-health or addiction issues, many young people don't discuss their responsibilities. Even doctors and teachers are often left in the dark.

As a result, the size of the young carers' community in Canada isn't well known, Chalmers says. One figure from Statistics Canada puts the number of 15 to 24 year olds who provide some form of care at 1.9 million, or 28 per cent of that age group at the time the question was asked, in the mid-2000s. The number is closer to 4 to 7 per cent around the world, but without more academic research in the field, comparing global numbers is "apples to oranges," Chalmers says.

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Abbigail’s work consists of supporting her brother – reminding him to take medication, writing out his schoolwork, fending off bullies and keeping an eye on him so their parents can get a break.

One thing that is certain is that the community is poorly supported and little understood. In Britain, often held up as a model, every person under the age of 18 who provides care is assessed by health professionals in order to determine what community services and financial support they need.

"Young carers are finally starting to be on policy-makers' radar in a very small way," Chalmers says, "but they're still not yet ready to do anything about it, because it's going to cost the government and taxpayers money."

On Nov. 20, the Change Foundation, an Ontario health-care thinktank, will host a two-day summit in Toronto on the needs of young carers, with Abbigail as one of the speakers.

In Canada, only a tiny handful of organizations provide support for these kids. The largest is the Powerhouse Project in southern Ontario, which offers nights out and skills training to more than 300 young carers between the ages of five and 12.

Both Hana and Abbigail were members, and learned skills such as cooking and mindfulness, among other things, but the program hardly begins to fill the need, especially as a rise in grandparent-led and single-parent families increases the pressure on kids who provide care at home.

And while Powerhouse Project looks after the youngest carers, there is a whole other demographic – adolescents and young adults – who find themselves at a different stage in life and equally isolated.

Hana Hussein has no regrets being a young caregiver. ‘I knew things that most nine-year-olds wouldn’t know, like what insulin is and how to inject it. It’s made me more mature,’ she says.

The Memory Ball in Toronto is an annual fundraiser that brings together young Alzheimer's caregivers and the people who support them. One of its organizers is Kathryn Fudurich, whose mom, Patricia, was diagnosed with a form of early-onset Alzheimer's eight years ago, when Kathryn was just 21 and a student at the University of Western Ontario.

Kathryn's family is one of four in a new documentary, Much Too Young, directed by Chris Wynn and Russell Gienapp, about the toll that early-onset Alzheimer's takes on Canadian families with teenagers or young adults. When parents lose the ability to look after themselves, it's the kids who bear much of the burden – just when they should be worrying about nothing more taxing than campus housing and frosh week.

Patricia was 54, an English teacher and mother of three when her diagnosis upended the lives of Kathryn, her two siblings and their father. All four took turns staying with Patricia as her condition deteriorated and she became incapable of looking after herself.

Every day, Patricia's family performed the most basic tasks for her, from hygiene to feeding. Kathryn's daily life was not something her university friends could understand; it was only when the documentary makers introduced her to Kathleen Fraschetti, another young woman also looking after a mother with Alzheimer's, that she found someone who could empathize with her situation. Kathryn put her plans to travel around the world on hold, and works as a freelance video editor in order to have the flexible schedule a caregiver needs. Caregivers' own needs necessarily get put on a back burner.

"I was just sad and tired all the time," Kathryn says of the immediate post-diagnosis period. "I was sad about what was happening to my mother, and she was the only person who could have helped me."

This is the particularly painful bind of young carers: Not only do they have to take on an adult role, they may also lose the comfort and support a parent can provide, just when they need it most. And that labour, largely invisible, is only now beginning to be seen.

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