They usually do not count the hours spent with their loved one in a situation of dependency.
But since the onset of the coronavirus epidemic, caregivers can't stop thinking every second that the virus would be stealing from them if they got sick.
The anguish of not being able to be at the bedside of the "help" has a remedy, the vaccine.
But caregivers are not a priority.
A subject "under discussion", promises the government.
“Being a caregiver is not synonymous with vulnerability”.
The words are written in black and white on the government website.
And they have suffocated a lot of soldiers in this silent army, exhausted after a year of confinement.
"Vaccination, in the current phase, is reserved only for home help personnel employed by companies or associations providing services in order to break the chain of contamination with Covid-19, these professionals moving from site to site, from establishments in establishments and from home to home to provide the expected care ”, specifies the online platform.
The only exception for caregivers, being one of the criteria for vaccination: being over 70 years old or having risk factors.
Sonia is 47 years old, no comorbidities and all the energy necessary to take care of 11 year old Liam, who is severely disabled.
“Polyhandicap is not publicized, people do not know the sum of skills that the parent performs.
My son, for example, has a gastrostomy
(Editor's note: an orifice in the stomach that allows the passage of a feeding tube)
, I sometimes have to give him valium ”, testifies this resident of Arras (North).
"I explained that I was a mother and a caregiver"
This double hat of mother and caregiver, Sonia wears it proudly, but indifferently.
“I tried to alert the ARS, the health authorities.
I fought in a vacuum.
If we get sick, who will take care of our children?
If I can't, he will find himself overnight in a structure that is very expensive ”.
So she took the lead.
“I went to see my pediatrician to get a medical certificate.
I said that I was the only one looking after my child and that I wanted to be vaccinated.
He gave it to me, and in front of the center coordinator, I explained that I was a mother and a caregiver.
And I had my first dose, ”she says.
Like Laure, who "finally sees the light" since she succeeded in obtaining the precious vaccine in Paris.
Mother of nine-and-a-half-year-old twins, suffering from a rare and orphan disease, she discovered with surprise that she was not a priority, before being seized with the same anguish: "If I happen to me something. thing today, not to mention hospitalization, not to mention resuscitation, but if I'm stuck at home in the back of my bed with a fever, what happens?
She asks herself.
"It is still up to the caregivers to find the solutions on their own", breathes Sonia.
The solutions exist, answers Sophie Cluzel, Secretary of State in charge of people with disabilities.
“There is 0 800 360 360, which is the number activated after the first confinement to respond to alerts for the need for respite, relaying and access to care.
Do not hesitate when you are in a difficult situation, ”underlines the Secretary of State, who announces to the Parisian the release of 53 million additional euros for the creation of respite places.
Initially, 105 million euros were devoted to the development by 2022 of 200,000 of these relay platforms for caregivers.
"It would be the double or triple conviction to have this Covid"
In her worst nightmares, Anne imagines contracting a long Covid, and with it, heavy symptoms to wear ad vitam aeternam.
Journalist, she has to travel for her work, at the risk of infecting herself.
"I'm scared in my stomach," she blurted out.
Because if I am alone, I can no longer take care of my child.
And together, we say to each other
My husband or my wife will have two handicapped people to manage ”,
worries this 50-year-old mother, founder of the association“ Acting together against Cerebral Palsy ”.
“It would be the double or triple conviction to have this Covid.
My son is severely disabled and has epilepsy, but we do not know the effects, in particular on unstabilised epileptics, ”she says.
According to Sophie Cluzel, “with scientific hindsight, we know that in young people, including those with multiple disabilities, the risks of developing serious forms are much lower.
Conversely, adults with Down's syndrome are very fragile.
(...) We prioritized the vaccination of disabled adults very early on in nursing homes.
We are at 74% of the vaccination rate of residents and all caregivers in the medico-social sector were involved from the start in the prioritization campaign, ”she assures us.
Morning essentials newsletter
A tour of the news to start the day
Subscribe to the newsletterAll newsletters
A record far from satisfactory for Jean-Louis Garcia. "If in some areas vaccination goes quickly, this is not the case everywhere", laments the president of the Association for adults and young people with disabilities (Apajh). "The public authorities are moving like slugs, initially, they had forgotten the residents of nursing homes (FAM) and specialized homes (MAS)," he recalls. Today, according to him, they are dragging their feet for caregivers. “People with disabilities, who are in day care, who return in the evening or on weekends, have contact with families. However, to be helping a child or an adult, it is a proximity thus requires to be vaccinated ”, insists it, a little annoyed:“ Moreover, on all the subjects, the people in situation in handicap we are at the pick-up. We are not on the radar, we have to shout loudly ”. Jean-Louis Garcia will know "quickly" if he has been heard, promises the Secretary of State.
