For Lucas, it all started behind the wheel of a car. He was then 16 years old, preparing for his accompanied driving license with his grandfather. Over the course of the sessions, the high school student notices that his ancestor can no longer find his way home. That he confuses his current house with the old one. The diagnosis came shortly after: Alzheimer’s. Despite his young age, Lucas decides to support his grandfather and, in turn, his grandmother. He comes to do the shopping, wash the toilet or shave. He also stays to sleep at his grandparents’ home, because his grandfather tends to go out at night and fall. “He had worked very hard all his life,” says the young man, now 24 years old and now a photographer. (he signs the photos which illustrate this article, Editor’s note) . He didn’t deserve to end up in a nursing home. » Like Lucas, there are more than 500,000 minors in France who provide regular and significant support to a sick or disabled loved one. For Françoise Ellien, clinical psychologist, psychoanalyst and founder of the Jade network (Young Carers Together), “we can even double this figure” as these young people are difficult to identify, or even do not define themselves as such.
Support, it is true, can take many forms. Sociologist and scientific director of the Handeo group (a social and solidarity economy company serving vulnerable people), Cyril Desjeux thus distinguishes direct help – where the young person goes directly to support a loved one – from indirect help where they acts to support the main caregiver by relieving them of certain tasks. The specialist also mentions intermediate help where the adolescent serves as an emissary between parents with linguistic difficulties and institutions or administrations, for example. Finally, he distinguishes discreet help: a child will make sure to be very good at school in order to avoid those around him a cause of additional anxiety. However, he notes, “the latter is not taken into account in the 500,000 young caregivers” listed.
Seniors on the front lines
Who are these caregivers under 18? “A priori, all young people can be affected,” believes Cyril Desjeux. However, certain characteristics are emerging. These are mainly girls. In the study she conducted among several thousand high school students, Éléonore Jarrige noted that three quarters were… caregivers. “An immense gender variable”, which clearly indicates to whom the tasks related to the care (take care) in our society. Most of the time, older siblings play this role. Like Livia, 16, who works with her 14-year-old brother suffering from an autism spectrum disorder. His missions ? Monitor him when their mother is away, understand his requests – he is non-verbal autistic –, respond to his many requests, because “he never stops”.
Emy, now 25, supported her sister who had a brain tumor when she was 13. “Small tasks,” she euphemizes, like hydrating him with a pipette of water, plugging in his gastric tube, making him taste food to relearn how to swallow. “A period where I repressed a lot of emotions,” she recalls. Because the young caregiver often has to grit his teeth. Coordinator of La Pause Brindille, a dedicated network, Rebecca Billy highlights the difficulties that mark the journey of these children and adolescents who are not quite like the others. “The risk of isolation is significant,” she explains. “These young people grow up too quickly, find themselves out of step with their more carefree peers. They are afraid of the gaze of others, of not being understood and keep their experience for them. They don’t dare to make waves and will lock down their emotions.”
For Emy, everything broke three years after the death of her sister. “I think that, throughout his illness, I had a deep depression and then I lost control. I was only angry. The therapy calmed me down, even if I still have some after-effects. today. In particular a need for recognition.” According to the figures, young carers report being in poorer physical health than their peers of the same age. According to Françoise Ellien, 60% of them suffer from sleep disorders and other back pain.
Open, sensitive and observant
If it is a source of difficulty, the role cannot be understood in a solely negative light. “One advantage,” smiles Livia, “is that, in an amusement park, thanks to my brother, we always go first! » Open-mindedness, sensitivity to illness as well as to difference, autonomy, sense of observation… Emy can continue the list of skills she has acquired at will. Livia agrees: “My little sister and I are more mature than other people our age. » The high school student is also planning to become a doctor: “I think I will have certain facilities because I know what helping means. » Unsurprisingly, it seems that a certain number of these young people are moving towards care professions. Lucas highlights the way his role gave a new dimension to his relationship with his grandfather. “It changes completely. Because by giving someone a shower, you move into intimacy. I knew his body. This creates another form of bond. »
This enrichment should not make us forget another reality: just like their older adults, young caregivers constitute “a voluntary force which is a pillar of the French health system”, recalls Rebecca Billy. Can we be satisfied with the fact that young people in full development are making up for the State’s shortcomings? For Françoise Ellien, the question must be asked differently. “Young carers want to help. But they ask to be “helped to help”. Hence the importance of times and places where they can ask their questions and their anxieties and speak freely without feeling like they are betraying their family. » Hence, also, the need “to strengthen the home support system for people losing their autonomy”, with a network of professionals. For the psychologist and founder of Jade, one thing is certain: the earlier these young caregivers are identified, the more they can be supported and the more the negative impact of caregiving on them will be reduced.
Who can we turn to to support child and adolescent caregivers?
- Jade. Created in 2017, the Jade association offers respite time to young people through free workshops and works to raise awareness among institutions of their situation.
- The Twig Break. This community offers a telephone listening service, but also physical sharing times in Lyon, and otherwise by video. She even organizes a festival specially aimed at young people between 8 and 25 years old.
- French association of caregivers. This historic association (it celebrates its 20th anniversary in 2023) constitutes a reference for information, particularly on possible aid and resources.