They are 13, 12, 11, even 10 years old and are… caregivers. For their brother, sister or parent. A program exclusively intended for young caregivers was launched in Centre-du-Québec last November. A first in the province.
Justine Tourigny was only 3 years old when she started helping her older brother Hubert, who has Down syndrome, with his daily tasks.
“I was helping him put on his snow pants,” says the 10-year-old girl. Today, she is the one looking after her brother, five years her senior. “Like during strike days. »
PHOTO MARTIN CHAMBERLAND, THE PRESS
Justine Tourigny acts as a caregiver for her older brother, who has Down syndrome.
Justine’s face lights up when talking about her brother, a hockey fan. She likes to support him in his activities, despite the challenges. “Sometimes he acts like a pig,” she said, letting out a little laugh. “But I feel valued. »
“We’ve often told her that she doesn’t have to, that she’s the little sister and not the mother, but it’s always been her fault,” confides her mother, Annie Slater, at her side.
PHOTO MARTIN CHAMBERLAND, THE PRESS
Justine Tourigny and her mother, Annie Slater
Justine is the youngest participant in the recent program of the Arthabaska-Érable Caregiver Association, the very first in Quebec intended specifically for young caregivers who take care of a loved one, regardless of diagnosis. Here, in the offices on Alice Street in Victoriaville, caregivers aged 17 and under can meet after school or during educational days. To do activities. To share their reality. And so as not to feel alone.
“We still associate caregiving a lot with the aging of the population,” notes Kim Hausselman-Beaudoin, youth worker at the Arthabaska-Érable Caregivers Association.
However, young people can also provide invaluable help.
With Justine, I have peace of mind. I know she will understand the needs [de son frère]she knows his daily life, then she knows what he likes and what he doesn’t like.
Annie Slater, mother of Justine Tourigny
A hidden reality
In Quebec, the reality of young caregivers remains largely unknown. “In Europe and Ontario, we have been concerned about young caregivers for more than 10 years. Here, we don’t even know what that represents in the population,” says François Melançon, communications officer at the Arthabaska-Érable Caregivers Association. However, he estimates that there are the equivalent of four young people per class who are caregivers.
Many of them are unaware that they are caregivers or choose not to talk about it with their friends.
PHOTO MARTIN CHAMBERLAND, THE PRESS
Kim Hausselman-Beaudoin, youth worker at the Arthabaska-Érable Caregivers Association
It’s taboo to say: “my brother has this diagnosis or this disability”, so some people don’t feel capable of calling themselves a caregiver. Other young people don’t invite friends over because Mom has a mental health diagnosis or is ill.
Kim Hausselman-Beaudoin, youth worker at the Arthabaska-Érable Caregivers Association
The reality of young caregivers is often very different from that of adults. “They are at school, in a period to socialize, so their reality as a caregiver can put obstacles in their way in the development of their identity,” explains M.me Hausselman-Beaudoin.
A normal day
It’s a stormy Monday in December. Between his day at school and his cadet program in the evening, Loufélix Gauthier finds time to visit the offices of the Association of Caregivers.
PHOTO MARTIN CHAMBERLAND, THE PRESS
Loufélix Gauthier, 13, takes on the role of young caregiver for his brother.
Since a young age, the 13-year-old boy has taken on the role of young caregiver for his brother Tao, 11, who has autism spectrum disorder, ADHD and motor dyspraxia. “I don’t talk openly about it to my friends, but often when they come to my house, they realize what I have to do for my brother. For me it’s normal, but for them it’s very different,” said the young boy sitting near the Christmas tree adorning the room.
PHOTO MARTIN CHAMBERLAND, THE PRESS
Justine Tourigny, Loufélix Gauthier, Anick Gosselin and Annie Slater in the offices of the Arthabaska-Érable Caregivers Association in Victoriaville
The challenge of being a caregiver? “We are not often free,” he responds straight away. Often I have to take care of my brother. So I can’t really play with my friends. » Thanks to the new program, the student of 1D secondary school discovered that “other children and adolescents experience the same reality as him,” explains his mother, Anick Gosselin.
Need for respite
The pressure of being a young carer can be great. And young people don’t always feel comfortable talking to their parents about it. “I keep it quite to myself, because I think it’s a bit of a detail,” confides Loufélix. Because he knows that he is giving his parents an important boost.
It helps them. It gives them time for themselves, to do their things.
Loufélix Gauthier
In order to offer moments of respite to Loufélix, his mother ensures that he does not always have the same shared custody as his brother. “There are days when I look after one child then I send the other to his father. So that [Loufélix] can have some quality time,” says Mme Gosselin.
PHOTO MARTIN CHAMBERLAND, THE PRESS
Loufélix Gauthier and his mother, Anick Gosselin
She insists on the need to provide an attentive ear and to make the reality of caregivers known. “Often, you think that the reality you are experiencing, you are the only one experiencing it. But it makes you realize that other families are going through the same thing. »
Other initiatives aimed at supporting young caregivers are beginning to emerge in Quebec. The organization Proche Aidance Québec offers online resources for education and health professionals working with young caregivers, while the organization L’Appui for caregivers has expanded its mission to support all caregivers , regardless of their age.
Learn more
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- 27%
- Percentage of Canadians aged 15 to 29 who provided care to a family member or friend with a long-term health condition, disability or issues related to aging.
source: Statistics Canada, in 2012