[Caring for a patient with amyotrophic lateral sclerosis: the patient's and the caregiver's experience]

ALS usually affects highly active, working, sportive individuals. The disease has a devastating impact on the patient's personal life and family ties. Indeed, the disease requires constant attention from the carer for its rapidly progressive nature leads the patient to a complete state of isolation without affecting his/her intellect. For the patient days, are numbered, for the carer, time is limited. The carer must cope with a number of medical, administrative and financial difficulties. These include belated diagnosis with its disastrous consequences on medication, lack of response from the decision-making services, home-improvements or car-fitting. All this requires amazing tenacity from the carer. All the more so as the progress of handicap is relentless and the patient is bound to use different forms of support, walking-stick, zimmer, wheel-chair, hoist, speech synthesis, gastrostomy, tracheotomy or palliative care, which turn out to be more or less effective. But mechanical devices are not enough. Assistance by a nurse, a physiotherapist, a speech therapist and/or a nursing auxiliary is necessary. There are not enough of these assistants and the result cannot be guaranteed, but their role is essential in home care. The carer's investment can be terribly consuming. The burden of 24h care wears out the carer whose days and nights are being regulated by the disease. Not to mention lonely patients with no means of support who find themselves confronted with inevitable daunting problems Institutions providing either temporary or permanent care for ALS patients are scarce. As the condition worsens steadily, the patient suffers sheer desperation and guilt feelings and resents being a burden for family yet would rather stay with them. ARS volunteers who collaborate with medical teams can provide much help. The carer's burden should be greatly lightened too by the newly-installed tutorial system: patients' files will be followed up by one single person after the center's social worker has drawn them up. Medical and home volunteers cooperate to give the patient the feeling that far from being abandoned or ostracized by society, he/she is constantly being given care.