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Coronavirus: the ordeal of family caregivers, at the bedside of their loved ones

2020-04-30T22:17:31.447Z


11 million French people take care of their sick relatives. Without real status, family carers are going through a difficult period, in the midst of a coronavirus epidemic.


"It's confinement within confinement." Since the start of the pandemic, Vanessa Boglio has taken “no risk”. Because for her daughter, the slightest contact with the virus "would be extremely complicated". Vanessa is the mother of two children, Antoine, 10, and Mathilde, 4, who suffers from a mitochondrial disease diagnosed at the age of two and a half. Mitochondropathies are diseases of the metabolism, rare and untreated.

Read also: Family caregivers: get help too

"Last June, in the space of 15 days, my daughter lost the ability to walk, language and apprehension , says the 42-year-old mother. It was violent and it called the whole home into question. ” So Vanessa had to make a difficult decision to take care of her daughter who needs her day and night. A kindergarten teacher, she stopped working in September, becoming a full-time "family caregiver".

In France, there are approximately 11 million family caregivers, the vast majority of whom provide voluntary help to a sick family member with a disability or dependency. Confinement did not make things easier for Vanessa and her family, living near Aubagne in the Bouches-du-Rhône. If the caregivers are already used to a certain confinement, occupying most of their days taking care of their loved ones, the isolation has gone up a notch.

Vanessa and her family DR / Vanessa Boglio

"We disinfect to the jar of compote"

Vanessa feels a little more cut off from society since March, she who made it a point of honor to organize activities to brighten up her daughter's daily life. “On Monday it was balneotherapy, on Wednesday a physiotherapist came to give him massages in the morning and in the afternoon we did music therapy together. It allowed us to get out of the house a bit, and to create moments of bond between us. For the moment, everything is canceled until further notice, there is no moment of respite. ”

Without forgetting the lessons at home that she gives daily to her son since the colleges are closed. Her husband, a police officer, takes care of the cooking and shopping, which he picks up at the drive only. There too, a whole ploy . “If my daughter is in contact with the virus, her little organism will not be able to fight. So we are very careful. He goes to get the groceries directly from the drive, then they go through the garage and we disinfect everything, right down to the compote jar!

For some caregivers, sourcing from supermarkets has become a headache. Brigitte Patin has been a family caregiver for 42 years. She first looked after her father, then her husband, a polyhandicapped man, suffering from a serious neuro-progressive disease. She cannot be away for long and leave him alone. The queues in front of the supermarkets have become restrictive. “The first time I went shopping, I stood in line like everyone else. Caregivers have the right to have priority cards but caregivers do not. ”

Brigitte has looked after her husband for twenty years. DR / Brigitte Patin

Except that Brigitte did not stop there. Spokesperson for the National Federation of family carers and carers (Fnaaf), she made the defense of the rights of carers her fight. “I went to seek the benevolence of the store managers to explain my situation to them. I am not just a companion. I consider myself a caregiver and therefore we should have the same prerogatives. I had to produce supporting documents with my husband's disability card and I was able to obtain a card. ”

"There is no recognition of caregiver status, it is a legal vacuum"

Brigitte Patin, spokesperson for caregivers for Fnaaf.

Brigitte Patin remains convinced that the difficulties encountered during the pandemic are only a reflection of the lack of recognition of their action. A law adopted in December 2015 establishes a right of respite for those who care for seniors. A second in 2019 suggests that active carers can benefit from a paid three-month leave, from October 2020. "But this symbolic financial compensation obscures the fact that there is no recognition of caregiver status is a legal vacuum, ”insists Brigitte Patin. According to her, an official statute must be created in order to allow the opening to social rights, to pension rights but also access to training.

Financially, carers can claim assistance if the people they care for are beneficiaries of the personalized autonomy allowance (APA), or the disability compensation benefit (PCH). Compensation, however, remains low, particularly for those who have had to end their professional activity. This was the case with Vanessa Boglio in September. To compensate for her losses, and the purchase of expensive equipment for her daughter who can no longer walk, she sent a file to the departmental house for the disabled (MDPH ). "I'm still waiting to go to committee ," she sighs. I have little income, my husband is a police officer, he does not have a staggering salary. The situation is difficult, it is difficult to make ends meet. ”

Especially when the investment is daily. At the age of 70, Françoise takes care of her son almost 24 hours a day. Now 42, he was born sick, suffering from an orphan disease. “When he was little, it was 24 hours a day, seven days a week. We even wonder how we manage to survive. After that, it calms down a bit and then, when you get to sleep 3 hours a night, it's paradise! ” At night, he regularly has epileptic fits or is subject to hallucinations, so Françoise sometimes gets up "like a bomb". In the morning, it is then necessary to "wake him up", "stimulate him", "help him eat", "manage potential crises". "It is a permanent support ," sums up the caregiver.

"Conductors"

"We are conductors," adds Brigitte Patin. I make the link between the medical profession and my husband. I manage his medical file, I will seek his treatments, I take him to the doctor or the specialist ... And then I practice certain gestures normally taken care of by a nurse, such as dressing changes for wounds, blood pressure, manage drug dosages and even insulin injection for his diabetes. And all that, on a voluntary basis . " Brigitte has no doubt about it, some caregivers have become "carers" and have acquired "expertise" which, according to her, saves social security money. “We also have merit, like the ones we call heroes today, and they are! We protect lives for years. We need recognition, that we have a form of identification and prerogatives similar to those of caregivers. ”

Moreover, faced with the health crisis that France is going through, Brigitte believes that caregivers are a little forgotten. “We must have priority for obtaining equipment. Once the hospital staff has been provided, we should be able to receive FFP2 masks, cloth masks and gloves. ” Equipment which will be required, in particular during the coming deconfinement period, from May 11. A deconfinement that worries more than one. For me, confinement is not really different from what I have experienced for 42 years, notes Françoise. We are already hyper-confined to society. What will be especially difficult will be the deconfinement when those who go out bring the virus home ”.

Vanessa does not hide her concern either. "Since my son has the opportunity to stay at home, for now we will continue like this. If there is the slightest risk that the virus is still circulating, it must be avoided that it brings it back to its sister. My husband is also confined because it was dangerous for Mathilde. He had to take sick leave because he was not entitled to anything else. I fear his recovery. " And then you have to live with fear, even "terror", according to Françoise, to catch the virus and contaminate your fragile relatives. The 70-year-old caregiver is also worried about getting sick. "When you have a sick child, you have one goal: to be as well as possible and above all, to live as long as possible so as not to leave them alone" .

Source: lefigaro

All news articles on 2020-04-30

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