“Caregivers need a helping hand”

Why did you agree to live this adventure?

Because I found this project both legitimate and necessary. Many caregivers find themselves left to their own devices, sometimes overnight. They receive no training and must learn to manage everything on their own. But as they are able-bodied, they feel that they have no right to complain. Result: a third of them leave before their help. This is a real public health problem. Caregivers need a helping hand.

How did you view assistance until then?

My father was a caregiver for twenty-five years. He obviously hadn’t planned it at all in his life plans. A construction worker, he thought he would spend his retirement traveling. But just as he was making this dream come true, his partner was affected by Alzheimer’s disease. So he devoted himself entirely to her. At the time, I saw his commitment as a sacrifice. Today, I understood that it was more of an act of love and tenderness.

How did you feel in this role yourself?

My mission was to support Thierry, 45 years old, suffering from Charcot’s disease. For him, every movement was an effort. It could take twenty minutes to reach 5 meters. Being by his side to help him with all the daily tasks was hard, physically and psychologically. No matter how prepared we are, it is impossible to remain indifferent to a man who finds himself trapped little by little in his body. But I only took on this role for two days. This is paltry compared to what Lauriane, his wife, takes on every day in addition to her work. I had no right to be below her.

Was there a particularly memorable moment?

Usually, when you meet someone for the first time, you take the time, you size yourself up, you lay the foundations. There, in 48 hours, we have no choice, we immediately dive into the deep end. It is an accelerator of life and emotions. Barely five minutes after my arrival, Thierry asked me to accompany him to the toilet. That he immediately trusted me to share such an intimate act was quite confusing but it immediately broke the ice. Very quickly, then, we started talking about everything, without taboos. Today, we are still in contact. We call each other, we send each other messages. Thierry is very lucid about the situation. He knows that with Charcot’s disease the outcome is inevitably fatal. However, he is not in despair. It even remains very bright.

What will you remember from this experience?

I leave with the feeling of being more complete, more fulfilled. During these two days, I put myself in the position of the caregiver but without Thierry’s instructions, I would not have been able to do anything. It was he who, each time, enlightened me. Proof that we are never nothing without each other.