“I lived and slept with her so that I could take care of her even at night”: every sixth student is a caregiver for a sick relative

At 25 years old, Irene has the calm and firm face of a young man who has already survived many trials. Her long brown hair flows in streams over her shoulders. When someone asks him a question about his mother, who died in November 2022, his facial features freeze and his eyes focus intensely on the other person.

For six years, in addition to studying public international law at the Sorbonne, she fought another battle: being the guardian of her mother, who suffered from breast cancer. A role that, like the vast majority of educators, she was completely unaware of. In honor of National Caregivers Day on October 6th, it celebrates the daily lives and challenges of young people who, as young adults, care for others.

“In the worst moments, I spent time caring for her in the hospital, doing certain things instead of the nursing staff, such as accompanying her to the toilet or helping her with medications because they were too slow and she was in the hospital. too much pain, she recalls today. During times when things were going well, I would edit while always keeping an eye on my phone in case she needed me to join her.”

According to the Association of Young Carers (Jade), like her, one in six students is a carer. However, according to the Campus Care study conducted by the Paris-Cité psychopathology laboratory with the participation of 6,700 students between 2019 and 2020, 80% of young people surveyed do not know what a caregiver is.

That is, a person who regularly and frequently helps perform all or part of the activities or activities of daily living for a person who is losing his or her autonomy due to age, illness, or disability. Therefore, an extremely little-known role that covers many realities.

For Irene, the first steps to help materialized in 2016, after her mother suffered a serious relapse. “I started by accompanying her to cancer appointments and then making medical decisions with her. I managed between classes, but missed some,” says the girl. Everything changed at the end of the first conclusion.

“No other treatment methods helped, and the metastases in the bones caused her enormous pain. She couldn’t walk for a long time,” she recalls in a quiet voice. We dress, eat, walk… Irene does all her daily activities together with her mother. “I lived and slept with her so that I could take care of her even at night. It was all a mental load that no one could understand. We lived in great solitude. But my mother was also my best coach in school and in life,” she emphasizes, her face suddenly brightening. “In the end we became one,” she says today.

“I didn’t even know I was a nurse”

This was followed by two years of repeated hospital stays for his mother. Months during which Irene, who has meanwhile entered the master’s program, prepares for exams and writes her dissertation right in her hospital room. She doesn’t talk to teachers about anything. However, since 2019, a decree has been issued – “very little known to the universities themselves, according to Amaranta Bourgeois, president of Jade” – allowing courses and schedules for student educators to be adjusted.

“But I didn’t even know I was a nurse. I was around medical staff for years and no one ever talked to me about it. And then I didn’t want to be treated differently. Legal education is crucial, you need to be strong,” sums up Irene. A secret that is revealed the day the professor asks him to retake part of his dissertation. “I burst into tears and showed him the hospital room on video. I told him that if I had to do it again, I would give up,” she recalls.

After her mother’s death, Irene finds a video of Roman, a young woman talking about her daily life as a caregiver. She finally talks about the role she has held for many years. “I completely broke down. I realized that thousands of young people were doing the same thing as me. It’s like I’m keeping a secret that many people have shared! “,” she explains with relief in her voice. Through the Jade Association, Irene then meets Romana, a student who is caring for her mother suffering from stage four cancer, as well as Leah, Eva and other students, all young women. “I was shocked. We spoke the same language! “, she concludes.

Romanet, 24, was studying for a bachelor’s degree at ENS de Lyon when her mother’s illness struck two years ago. “I missed half of my classes, invited my mother to my small student apartment in Lyon so that she could be closer to treatment… It was so difficult that I almost stopped studying,” She admits. Those around him encourage him to continue. “It was the best decision I made,” she judges a year later. Upon graduation, she turned down a six-month internship in Australia, which she replaced with a fellowship in neuroimmunology at the Pasteur Institute in Paris. “The worst part wasn’t the six-hour train journey between Paris and Lyon, which cost me an arm and a leg. It was a mental burden to tell myself: I’m bad at both, I’m not fully present for my mother, and I’m performing poorly at my internship,” explains Romane.

For other young carers, despite the stressful pace of this double life, school provides a necessary refuge. 21-year-old Léa cares for her boyfriend Jules, with whom she lives in Aix-Marseille, who suffers from attention deficit disorder (ADHD), eating disorders (TCA) and difficulties with fine motor control, which interfere with him on a daily basis. Her role as a caregiver consists mainly of moral and emotional support, as well as managing all the logistics of daily life and the mental workload that comes with it. “It’s very valuable to me to be a student and go to college and have a different identity than the caregiver. It gives me a space just for me where I have other social connections,” she explains.

Invisible status and insufficient rights

Now pursuing her second master’s degree at ESCP, Romane has created, thanks to her school’s prize, a student chapter of the Jade Association, which brings together all these young women. “The most important thing is to let young people know that they are not alone and that they have status to get the financial help they need,” she says. From the start of the 2023 academic year, young carers of a member of their immediate family (parent or sibling) or partner (on PACS or marriage) can actually gain four extra points in the award scheme. scholarships. This allows some people to “be eligible for a scholarship if they have previously exceeded the resource limit”, the ministry notes. A valuable resource “because it’s almost impossible to find a job as a student if you’re already a student and a caregiver,” notes Irene.

This is a necessary measure “to make the system fairer and more consistent as a whole,” Higher Education Minister Sylvie Retailo reasoned during her back-to-school conference. But also largely incomplete. “This only applies to carers of people receiving Autonomy Assistance Allowance (APA) or PCH (Personal Disability Benefit), i.e. not those with serious illnesses,” grumbled Amaranta Bourgeois. Irene or Roman, for example, could not benefit from this. After attending a recent meeting with the ministry on this issue, Amaranta wants to hope that “this huge shortage” will develop this year. The ministry, however, indicates that “no measures are being taken in this direction.”

Many obstacles remain to be overcome to make this status visible, especially among young people. “We find it very difficult to tell them about their rights and understand that they are not alone,” explains Amaranta Bourgeois, a caregiver herself. “However, thanks to recent research, we know that caregivers are more likely to fall into addiction and have a 15% increased risk of becoming a victim of psychological or mental illness,” the president recalls. “It’s time to take care of them too.”