"It's all down hill from here," or is it? Living with loss and grief associated with motor neurone disease

Abstract

People living with motor neurone disease (MND) experience progressive loss of muscle mass and function, leading to death, usually from respiratory failure. An ethnographic case study involving eighteen families of people with MND revealed that family carers experienced multiple losses. Focusing on the care of their loved ones left carers little time to acknowledge and manage their losses. Carers found difficulty in expressing feelings in the family and social context, increasing their emotional labour. The unpredictability of the course of the disease and the constancy of bodily degeneration created an ambiguous loss, restricting carers' ability to manage care and cope with the situation. Findings from this study and the strategies discussed have implications for supporting people living with life-limiting illnesses.