An obvious need for rest
AFM-Téléthon wants to devise solutions to meet the need for rest mentioned by a growing number of patients' parents or spouses. People suffering from neuromuscular disease are, indeed, living longer and longer. But, as they grow older, the disease and disability take their toll. When the patient needs a third person there constantly, the job can become exhausting for the helper, as this father confirmed, whose son, suffering from Duchenne muscular dystrophy, is aged over 40: "24 hours a day, fragmented nights, it's tiring, particularly as you get older. Even when my wife and I go away for a weekend, I wake up with a fright in the night, thinking I have heard the respirator alarm."
To allow families to rest, AFM-Téléthon designed a new concept. Its originality? It combines three services to meet needs previously not satisfied:
- Firstly, a holiday village which can take families. Although they need some respite, many helpers don't want to leave their sick family member alone in a temporary care centre.
- Then, a healthcare and social welfare service, which can take over caring for the patient and help with daily activities: going to the toilet, washing, meals, etc. The family member-helper is free from the constraints of the disease. But, the patient can also stay alone in the village.
- Finally, a service to help helpers (events, discussion groups, etc.) for those who need support to rest and relax.
Villages open to other disabilities
The first Family Respite Village, La Salamandre, opened in October 2009 at Saint Georges-sur-Loire (Maine-et-Loire département, France). A second one opened in Jura in 2014.