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Gérard's daily life with Anne-Marie, suffering from neurodegenerative disease

A national day is devoted to relatives of dependents on October 6. Anne-Marie's spouse testifies to their difficult daily lives.

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Gérard's daily life with Anne-Marie, suffering from neurodegenerative disease
Anne-Marie B. Grabs hand of her husband, Gérard, and emits a little noise with his throat. "Oh, it's rare, you hardly hear it now," comments her husband with a smile. It is affected by a frontal-temporal degeneration (FTD), a neurodegenerative pathology related to Alzheimer's disease. His first symptoms appeared eleven years ago with language disorders. Now retiree of 72 years can no longer speak and her husband, who prefers to keep her anonymity, takes care of her every day.

On occasion of National Caregiver Day, every 6 October, many events are organized to discover measures designed to help those 8 to 11 million of French who care on a regular basis and in duration of dependent relatives.

Since March 2016, those who care for elderly may, in particular, benefit from a "right to respite", an annual aid of EUR 500 intended to fund punctually a reception device. Enough to allow caregivers to blow. "Some don't even have time to go out and lock mselves in isolation," explains Florence Leduc, president of French caregivers ' Association. But right to respite is still little used. In question, lack of information and criteria for attribution. But not only that.

As a spouse and caregiver, Gerard evokes or difficulties: "To be accompanied, one must first accept fact that one cannot get out of it alone." He asked for home help only three years after onset of his wife's illness, which receives daily nursing care and goes three times a week to a day reception centre. "I realized that I could no longer do everything: working, cooking, shopping ...", lists this engineer who still maintains a professional activity. It's hard to accept someone coming to disturb ir intimacy. »

Constant attention

Seated on a bench, on sunny terrace of his house in Saint-Paul-de-Vence, near Nice, his wife looks at his interlocutors with an air sometimes absent, sometimes connivent. Without knowing exactly what perception she still has of ors and of herself.

"It's hard not to be able to communicate as before," explains Gerard, gently stroking hand of one he married in 1969. It's like being we loved was gone. But not quite eir. »

He is no longer only a husband, he is also a nurse: "We remain a couple arm on, arm under." We walk around, we go to café, but Anne-Marie became like my baby. I organized a whole day to deal with it. A ringtone reminds him for example moments he has to take him to toilet.

Consequence: A cocoon of transformed torque. It is difficult for a spouse to accept idea of putting diapers on his wife – "At first it was for me such a lapse that I could not." In addition to a precise organization, everything must be subject to constant attention. A few years ago, on eve of a Christmas Eve at parents of ir daughter-in-law, Anne-Marie plunged into a hot bath without alerting her husband. She must have been hospitalized because of burns.

Gérard rises to fetch meal prepared by his home help. It's a plate of salad, which he wears leaves to his wife's mouth. "At first she just needed help cutting her meat," he says. With evolution of disease, or gestures have become more complicated for her.

And n, for a few minutes, she seems somewhere else. A smile illuminates his face, hidden behind his sunglasses. His red varnish is matched to color of his shirt. "It begins to become flaky," Gerard remarked. I'll have to make him do it again: I can't do it alone. »

A relationship of torque difficult to maintain

The toilet, on or hand, he already takes care of weekends. At first it was difficult. Now it's become ir moment of intimacy. "Of tenderness, even," adds Gerard. He spends "about an hour, a period of time that nurses cannot afford". "I know that one day I could not keep it, for example if my health is deteriorating," he admits. A deadline he wants to postpone as long as possible.

Some solutions exist to maintain helping couples-helped toger: in Paris, for example, UTB Foundation will soon be providing suitable apartments for couples with one of members suffering from Alzheimer's disease. They will be surrounded by volunteers, and will have easy access to care.

But Gérard, a former Parisian who thought he would spend part of his retirement in capital, is not yet ready to pass this course, even if he enjoys concept. "It means moving, losing all se landmarks that have been established over years for Anne-Marie's illness." A balance that he does not want to upset at moment.

"Respite Stays"

Financially, he's doing it. But it's not easy for all caregivers. According to April Foundation barometer with BVA Institute published in September 2016, a third of m deplore lack of financial assistance. The same survey indicates that 35% of caregivers feel y do not have enough time for mselves. Gerard managed to find a way to blow. Occasionally, he takes part in "respite stays".

With or couples in same situation, y find mselves around relaxing activities. Mini-vacations that end in a time of exchange between caregivers. "It allows us to express things that we can only say to someone in same case as us." To break silence. Moreover, he apologizes for being talkative: "I am not used to being able to tell all this in detail."


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