“We came to greet you because we know how important your action is and the insufficient awareness of caregivers”, asks Sergio Salmeron. The head of the pneumology department of theSaint Joseph hospital (14th arrondissement of Paris) went to door 11, where a strange caravan took place this Monday morning, between the ambulances and the garden.
A few madeleines, cups of coffee, colorful posters and tables in the sun attract some curious caregivers. The “All Helpers” caravan, Who started his fourth Tour de France at the beginning of June, stops until Wednesday in this hospital before joining the market place of Ermont (Val-d’Oise).
Raise awareness of caregivers and families of patients
Marie and Marine, two chest oncology nurses, climb into the caravan, arranged as a cozy living room, where visitors can have sweets and brochures, but above all advice from social workers. “It’s really useful,” Marie assures us. The relatives of our patients with lung cancer abandon themselves and put their lives on hold, that’s understandable, but it’s also necessary to pass the baton. However, they dare not ask for help. “
A few minutes later, a caregiver comes to take information. Laurence, 58, takes care of her father, who suffers from skin cancer in the ankle and risks amputation. “I work part time, luckily… But he calls me five times a day for trivial things. It’s a part-time-full-time! I’m so stressed and exhausted… ”“ Is it complicated? », Encourages Chantal, social worker. “Yes, especially administratively, it takes an infinite amount of time”.
And Laurence to enumerate her steps to obtain thepersonalized autonomy allowance (APA), the help of a nurse… “I’m sick of being a ping-pong ball that we send from one administration to another. And with Covid-19, a process that normally takes eight days reaches a month and a half. “” Do you know that you are entitled to paid caregiver leave? “No, I didn’t know anything about it,” replies Laurence. “It can go up to three months and your employer cannot refuse it to you, but will ask for supporting documents. “
Fourth tour with 21 stops
Since 2018, the association The Caregiver Company, thanks to the support of many partners, travels through France in a caravan to support people like Laurence: relatives of disabled, dependent or sick people. “It all started in 2017, with a hackathon, traces
Claudie Kulak, its president. I proposed this idea because I think that we have to go to the helpers. Many ignore each other. Suddenly, we set up an experiment by putting this caravan in the middle of the forecourt of La Défense. Full box, 700 people came in three days. “
Little by little, a real Tour de France took shape. With ten stages in 2019. “2020, it was the big anguish with the pandemic, she admits. And against all odds, we managed to do seventeen stages. I had to fight in some places. And we postponed the tour to do it between September and November. The last day was the announcement of the second confinement! We have to believe that positive projects have luck on their side … “
The objective is threefold: obviously, answer the questions of all caregivers and offer them solutions. “But we also want to occupy the public space so that we can talk about this subject,” continues Claudie. There are indeed 11 million caregivers in France, but the aids remain unknown and the interlocutors multiple. “We can all be helping and of course helped,” she insists. Finally, the third goal: the caravan invites local structures to present their solutions. “Caregivers need to know the ecosystem of the place where the person being helped lives,” she emphasizes. And I am impressed by the number of innovative experiences that I discover thanks to the caravan. “
“I saw myself as his loving daughter, not his caregiver. “
This Monday morning, Margot, psychologist for a support and respite platform for caregivers of the elderly, is in fact on duty. “Coming to the hospital is strategic, because caregivers take so much care of their loved ones that they have very little time to take care of themselves. So they find it difficult to take the approach of going to the appropriate structures. “Many tell us that there should be more coordination between the players,” says Claudie.
This is why the team got back behind the wheel in 2021 for its national tour of 21 cities. But coming back to Saint Joseph, in particular, moves Claudie. “This is where my father was followed for seven years for his Alzheimer’s disease. I know how hard it is to accompany a loved one. I saw myself as his loving daughter, not his caregiver. This is why she took an interest in this part of the health system which is only beginning to emerge. With companies that position themselves in this niche, but also the recent compensated leave and the law of great age and autonomy,
promised for the start of the school year by Olivier Véran after three years of postponement.
And there is urgency. We have seen this with the health crisis, which has increased the contribution of these caregivers. Because the Covid-19 has mobilized caregivers in hospitals, requisitioned beds, put on sick leave of many professionals working in nursing homes or in structures welcoming people with disabilities. And, by extension, demanded an enormous availability on the part of these helpers. Thus, during the crisis, more than half of them had to perform acts usually performed by health professionals and home helpers, reports La compagnie des aidants.
“In 2020, fewer families requested temporary accommodation in nursing homes,” says Margot. These establishments were strongly associated with contaminations, deaths and lack of visitation rights. “For Claudie, all the same, this pandemic will have raised awareness:” Without caregivers, our health system would not have functioned as well. Big up their. “