This kind of arrangement ensures that the person with ALS enjoys the comfort of home, has privacy and is taken care of by a constant companion who knows his moods and understands his needs. It may lead to a deepening of the emotional bond between the two. And it can save money. However, as the disease progresses and the person with ALS loses more and more abilities, the demands upon the caregiver's time and energy become greater.
Many primary caregivers receive little or no help from family members.
The stress, both physically and psychologically, can become enormous. The caregiver may come to feel that he or she can't continue to handle this ongoing responsibility without some kind of support and assistance. There's no reason why you, as the caregiver, should have to shoulder this responsibility entirely on your own. Nor should it be necessary to resort to the extreme option of consigning the person with ALS to a residential nursing facility, or nursing home, where full-time care can be provided. Consult friends and relatives, hospital personnel, and the Health Care Service Coordinator at your local MDA office.