The Reality of Home Life after Diagnosis of ALS Patients Living Alone

In this paper I describe the living circumstances of an ALS patient living alone. Research method: participant observation of the living situation of a man in his sixties and a summary of his lifestyle living alone at home following his diagnosis from records made between March 22nd and June 10th, 2008. Result: following his diagnosis, the subject was told by a hospital doctor that going on a mechanical ventilator would be difficult because he did not have any family living with him, and he signed an advance directive to “not use” (a mechanical ventilator). After he left the hospital, he applied to enter a nursing care facility but there were no openings, and his symptoms progressed while he was living at home. The nursing care insurance service he was using did not provide satisfactory consideration of the economic burdens of his illness, and difficulties in everyday life were caused by various costs incurred by a move that accompanied receiving welfare, complicated procedures for multiple systems related to medical treatment and unemployment and management of income and expenditures, and the lack of support for excursions to go along with his reduction in physical functioning. With specialists involved in his care following his diagnosis being unfamiliar with disability welfare services, after being consulted by his day service doctor I introduced him to a researcher involved in support for ALS patients living alone at home and he became aware of the possibility of support. Out of consideration for professional domains an informal support intervention took time, however, and support for rebuilding his life at home began with the provision of information and support needed by the subject arriving late.