They support an elderly mother, a sick husband or a child with a disability. Caregivers, a silent army of 8 to 11 million people, are far from experiencing the relief of deconfinement. The few minutes of Karine's bus to work, it was "her moment". The one far from the daily life of his Parisian apartment, punctuated by the care of his 84-year-old mother, suffering from vascular dementia. On March 17, Karine lost her decompression chamber. Found since? No, because this journey no longer has the same flavor. For many caregivers, the two months of confinement once again revealed the lack of recognition of their status, and created new difficulties that still persist today.
“Deconfinement means taking risks. Not for me, but for my mother. If she gets the virus, I'm afraid she has no right to resuscitation. The more I go out, the more I risk transmitting it, ”Karine worries. An additional responsibility that weighs on his shoulders, already well loaded. For the past twelve years, this childless bachelor has been tirelessly caring for her mother. "She can no longer speak, she no longer understands words. She no longer recognizes me, ”she describes.
A daily heavy situation that confinement has made almost impossible to live with. "I can't isolate myself in the apartment. Working with a demented person at home is very hard, ”says Karine. “I spent fifty-five days with my mother, I never thought I would live such a moment. I realize that I speak to him more and more badly, that I have more patience, "she continues. A report also noted by the group of parents of disabled children, Handi-Actif France.
"We have been completely let go"
In a survey carried out with 500 parents concerned, pointing out the absence of therapeutic aids during confinement (87%), it also appears that nearly one in three parents, due to fatigue, recognizes having had least a word or a gesture towards their handicapped child whom he regrets. “We were completely let go, says Anne Gautier, founder of Handi-Actif France and mother of a 13-year-old polyhandicapped child. We often had to replace several therapists to maintain the care of our children. This situation prevented parents from caring for others in the event of siblings. And it was not a call from the structure accompanying the children, made at best once a week to take the temperature, which was of great help. "
Faced with this finding, the government set up Monday, ahead of its schedule, a toll-free number to support people with disabilities and their exhausted families, 0 800 360 360. Marlène Schiappa, Secretary of State in charge of Gender equality and discrimination, pleaded for a new leave for “sick parents” intended for carers. But as the associations point out, the urgency is not there. “There are caregivers who refused to seek treatment because they were at the front, they made the situation last. We will surely be told that we have wasted time, but we want the Act for caregivers plan, launched in October 2019, to be implemented in October 2020, ”insists Claudie Kulak.
More than anything, the president of the Je t'aide association wants to relaunch the debate on caregiver status. "After each war, we saw social progress, it must be the case for this crisis," she asserts. “We see that the carers are co-carers. Some have notions, others care without having been trained. If the latter had not been there, we would have had a greater catastrophe, ”she underlines. "We participated greatly in the national effort," says Anne Gautier. Many professionals working in the structures have been requisitioned to strengthen the teams in hospitals or boarding schools for adults or children with disabilities. This solidarity effort was only made possible because parents kept their disabled child. "
"No masks, gloves or bonus"
But associating caregivers with caregiver status - which would have allowed them to benefit from protections at the start of the crisis - is not envisaged by the executive, which nevertheless recognizes that some caregivers perform medical procedures. "It is not in the pipes, we know the problems but with these millions of carers, it is not so simple", explains the State Secretariat for the disabled. Inaudible double talk for Céline Martinez, caregiver of her 11-year-old son, suffering from Prader Willi syndrome, a rare genetic disease. "We are the keystone of the health system: we save the government $ 7 billion, we freed up places in hospitals during the Covid, but we had no masks or gloves and especially no bonus" , complains Céline.
During confinement, the reception and respite structures closed, leaving this clinical psychologist on a daily basis with a sometimes violent child. “Containment has always been our experience. In the care services from birth, in the physiotherapy emergency services ... in these moments, the world around no longer exists because the only thing that matters is that the child survives. So, when the confinement was announced, I said to myself , I know, ”she says. But, for the first time in ten years, the family had recently managed to find a little balance, which crashed on March 17. “Since September I had a job, I did what I love, a little by telework and face-to-face. Overnight I lost everything because it's impossible to telecommute with my son. I tried but after a month I couldn't take it anymore. "
"I have to save my skin"
"Only parents' associations have come to my aid with tutorials to support and motivate us," says Sophie, the solo mother of a 10-year-old multi-handicapped child. My son is visually impaired, fed by a machine, cannot move, I stand him up every day… He needs a person 24 hours a day for millimeter monitoring, ”she explains. The closure of the Medico-educational Institute (IME) in Hauts-de-France, where his son was taken care of before the epidemic, did indeed transform him into a caregiver: physiotherapy, occupational therapy, visual stimulation…
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Result: “I was quickly exhausted and has suffered from tendonitis and sciatica ever since. However, as of mid-April, the Regional Health Agency had given instructions for mobile teams to intervene and allow us to take a break. In vain, ”she laments. And today ? “The recovery is homeopathic. I only got two hours of care for my son, three times a week thanks to a word from his neuropediatrician. And for that, I had to sign a release! By the time I bring him to the establishment, I don't rest much. I beg every day with the IME so that it takes it more, “says this 45-year-old mother, beneficiary of the RSA, who has not worked since the birth of her son.
"I do not plan until September," says the mother of Lena, a 31-year-old adult "classified" autistic very deficient. “Lena is everyday life, complete nursing. Until then, she was welcomed in a day hospital, returned every evening, with home help in the morning and a relay in a respite home, a weekend every six weeks. The first month, the whole family, strictly confined, lived at their own pace. The second, I was in great demand for home help. I left my health there and I'm in bad shape, ”says this 50-year-old who lives in Brittany. She continues: “Today, we are only offered day care, Thursday and Friday from 9:30 am to 3:30 pm. They make fun of us! I must now do violence to myself, kneeling, to implore that I be removed for a month or two. I did not expect to reach such an end. I have to save my skin. "
