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.
- October 6 is National Carers’ Day, the culmination of an awareness campaign on their daily lives.
- Sandy, who supports her husband who suffers from MS, recognizes that “everyday life is sometimes stifling”.
- She turns to a psychologist to relieve the pressure of her daily life as a caregiver.
“It makes me happy when people ask me how I’m doing!”. Sandy, 47, has been supporting her husband Arnaud, who suffers from multiple sclerosis, for almost twenty years. A dual role of wife and caregiver that she chose to take on as soon as she met the man who shares her life and with whom she had a daughter, now 20 years old. “When I met him, he had just learned of his illness. It was love at first sight between us. He made the choice to be frank and tell me things so that I could leave if I wanted it… he took the time to explain his illness to me, the symptoms, the ins and outs”. Far from fleeing, Sandy lets her heart speak. “I was already very much in love, it was such a beautiful story that was beginning, I couldn’t leave him, for me, his illness was just a point of detail!”.
However, faced with multiple sclerosis, a chronic neurodegenerative pathology for which there is no treatment to cure it, the future necessarily looked complicated for the patient as for Sandy and their daughter born shortly after. time after their meeting.
“The wheelchair has entered our life”
“The pivotal moment was when Arnaud began to isolate himself, he had more and more difficulty walking, he suffered from neurological pain in his legs, he was less and less able to accompany us”remembers Sandy. The solution imposed itself: “The wheelchair has entered our life…”.
This visible mark of the existence of the disability, this first real loss of autonomy, Sandy nevertheless experienced as access to “real freedom”. “It wasn’t easy, but we rediscovered the pleasure of going for walks together, of reliving moments of relaxation and fun as a family… In fact, it was great! Even if when we say that in such circumstances it always surprises!”. And Sandy recounts with a smile some anecdotes like the one where, after adapting an electric wheel to his chair, Arnaud had to wait for her while she accompanied him while she was on a bike!
@pourquoidoctor For more than 20 years, Sandy has supported her companion Arnaud, who suffers from multiple sclerosis, with admirable strength and resilience. In collaboration with Novartis, discover his inspiring testimony. ???????? #CaregiversDay #MultipleSclerosis #Testimony #Support #EverydayHeroes ♬ original sound – whydoctor
The need to continue leading one’s own life
A normal life as a couple, as a family? Almost. Because, despite everything, “everyday life is sometimes a little stifling”emphasizes Sandy. His breath of fresh air? Sessions with 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.”
But she also insists on the need for her to continue to lead her own life, “to think about something other than the illness and the way it impacts daily existence, to do activities that Arnaud could not do”. While there is no question for Sandy of letting her disability marginalize Arnaud in everyday life, she rules out the risk of “become his nurse”. “I am very careful to give him his place as a man, husband and father… It is important to me that he continues to do the dishes and clean, even if he complains while doing it!”.
“I don’t want to infantilize him.”
What remains for Sandy, Arnaud and their daughter is the sword of Damocles that the progression of the disease represents. She is obviously present in everyone’s minds but Sandy has no intention of giving up. “If his condition worsens, I will continue to support him without it being a problem. But in the meantime, I don’t want to infantilize him!”.
-1730888646.jpg "Kidney donation while alive: “It was an act of love that I did for my sister”")
