05/10/2012 08:00 EDT | Updated 07/10/2012 05:12 EDT

Children who look after ailing parents sometimes overlooked by system: experts

TORONTO - On a good day, Thomas Shin only had to change a few diapers when he got home from high school. On a bad day, he'd find himself following a trail of blood to the site of his father's latest fall.

Teenage life was always unpredictable for Shin, who began caring for his ailing parent at the age of 12 before doctors had even settled on a diagnosis.

Shin, his mother and two younger sisters coped with dramatic mood swings and escalating physical symptoms for three years before his father was found to have frontotemporal degeneration (FTD), a condition that slowly ate away at his brain function.

By the time the diagnosis was handed down in 2006, Shin and his siblings were fully versed in a routine familiar to tens of thousands of youth across the country — providing primary care to a parent who could no longer fend for themself.

"There was a real mix of emotions when we found out what was really wrong," Shin, 19, said in a telephone interview. "I just pushed it to the back of my mind and tried to take care of him as best I could."

For Shin, providing that care meant suspending most of the activities considered part of a normal high school routine. Instead of sports or extracurricular clubs, he spent his after-school hours helping his father with basic tasks such as eating, walking and showering.

The demands became more onerous as his the illness progressed, Shin said, adding much energy also had to be put into curbing the irrational impulses triggered by his deteriorating brain condition.

His sisters — aged nine and three at the time of the diagnosis — also needed additional supervision that their father could no longer provide.

June Shin said all three of her children pitched in readily while she was earning the paycheque to fund her husband's $1,800 monthly medical bills, but acknowledged a disproportionate amount of the work fell on her son's young shoulders.

"Thomas, as the boy, I could rely on him to help me move Michael easier. I counted on him probably more than the others," she said.

Those expectations — coupled with the taxing home routine — took a heavy emotional toll on Thomas, particularly as he came to feel isolated from his peers and singled out by some of the adults in his life.

"People were saying that I have so much more responsibility now and how I need to step up and be the man of the house when I wasn't even old enough to be considered a man," Shin said.

"It's stressful. It's a lot of unneeded pressure."

Such emotions are common for the country's youthful care-givers, who experts say have largely fallen through the cracks of the medical support system.

Marge Dempsey, founding member of the Young Carers Initiative, said most family services are tailored towards both the patient and the primary adult caregiver while overlooking the needs of the children.

Such an oversight is significant, the organization argues, estimating the number of young people in Canada caring for a physically or mentally ill parent tops 108,000.

Dempsey said the Young Carers Initiative tries to fill the gap by ensuring affected teens have a network of empathetic peers and appropriate social services to turn to.

"Children are the ones who have no real say in the process. They're always along for the ride. No one asked them if they wanted to be part of this," Dempsey said. "I think it's recognizing that when you have a person that's part of a family that's got a health issue, there are other people in their immediate circle who are directly impacted."

Dr. Tiffany Chow, behavioural neurologist at brain research centre Baycrest, said the limited support resources that were available in recent years tended to focus on shielding youth rather than teaching them to navigate an inherently adult situation.

"The specific needs of young caregivers will depend on the condition they are helping to support," she said, but added all caretakers could benefit from being treated like the grownups they've been forced to become at an early age.

""I don't know if culturally we're trying to protect the children from knowing too much, but I think that's exactly the wrong approach," she said. "The more we're honest with them, the better they'll be able to understand and cope."

Honesty was the best policy for the Shin family, Thomas said. Frank discussions of his father's medical condition helped everyone face the rigours of the caregiving routine and helped the unit pull together when he died last year.

Those bonds have stood him in good stead as he transitioned to supporting his family members, including mowing the lawn and coaching his sister's hockey team.

Most of all, he said, the support system he enjoyed allowed him to find a silver lining in his experience. He is currently enrolled in a college nursing program and hopes to become a paramedic in the next few years.

"I know I can't prevent brain diseases, but I know that if I am doing that kind of care, I want to be able to help people that have to go through the loss of a loved one," he said. "I can more relate to them and I can help them out more."