The role of caregiver concerns one in five people in France. Beyond the national day dedicated to them on October 6, the authorities launched an awareness campaign throughout this month on their daily lives. Accompanying patients with serious illnesses, caregivers tell the reality of the support they provide them. Testimonials collected with the institutional support of Novartis. Today, that of Sandy who accompanies her husband suffering from multiple sclerosis.
- An awareness campaign on the role of caregivers is taking place during the month of October.
- Sandy, who supports her husband suffering from multiple sclerosis, seeks to preserve the patient’s autonomy as much as possible.
- She resorted to the support of a psychologist for her.
A diagnosis of multiple sclerosis is like a bolt from the blue. For the patient and those around him. Although the disease for which there is no treatment is not fatal, it is today in France the leading cause of severe disability, excluding trauma, among young adults. For this reason, it can be very difficult to live with for loved ones who, because it affects people “in the prime of life”, are most often parents or spouses.
“His illness was just a detail”
For Sandy, 47, the need to one day become her husband’s caregiver emerged the very day she met him. “When I met Arnaud – it was love at first sight! – he had just learned of his illness. He made the choice to be frank and tell me things so that I could leave if I I wanted it…”she remembers. But there is no question of fleeing for the young woman: “It was such a beautiful story to begin, for me, his illness was just a point of detail!”
A point of detail but one which nevertheless greatly changed his life. Taking the role of caregiver for a patient suffering from MS heralds a particular future: not only does the disease progress in stages with flare-ups that require constant adaptation, but above all it ends up generating real handicaps which will increase the responsibility of the caregiver. “Arnaud began to isolate himself, he had more and more difficulty walking, says Sandy, the wheelchair entered our life…”.
Do not let the patient become marginalized
However, this “pivotal moment”as she calls it, this first real loss of autonomy, Sandy and the daughter she had with Arnaud found the strength to make it positive. There is no question of them letting the patient be marginalized, even less of being reduced to “play nurses”. “It wasn’t easy but we rediscovered the pleasure of walking together, reliving moments of relaxation and fun as a family… in fact, it was great!”
https://www.youtube.com/watch?v=1wYo87YinoI
For the caregiver, the support of a psychologist
Great… but despite this desire to lead a life as a couple, as a family, as normal as possible, it is not every day that simple. “Everyday life is sometimes a little stifling,” recognizes Sandy who also has recourse to support, that of a psychologist. “It is important for a caregiver to be able to speak with a third person, to be able to say without restraint everything that is on my heart.” Listening that helps him preserve his own life: “It makes me happy when people ask me how I’m doing!”she jokes.
She knows that her husband’s progressive illness is a sword of Damocles over her future. “If Arnaud’s condition worsens, I will continue to support him without it being a problem”assures Sandy. But it has already imposed rules: “It’s very important to me that he continues to participate in our daily lives, that he takes his turn doing the dishes and cleaning, even if he complains while doing it, I have to give him his place as a man, of husband and father”.
