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'It's All Down Hill from Here,' or Is It?: Living with Loss and Grief Associated with Motor Neurone Disease

Grief Matters: The Australian Journal of Grief and Bereavement
Volume 9 Issue 1 (Autumn 2006)

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.

To cite this article: Ray, Robin. 'It's All Down Hill from Here,' or Is It?: Living with Loss and Grief Associated with Motor Neurone Disease [online]. Grief Matters: The Australian Journal of Grief and Bereavement, Vol. 9, No. 1, Autumn 2006: 8-11. Availability: <http://search.informit.com.au/documentSummary;dn=166566797881205;res=IELFSC> ISSN: 1440-6888. [cited 27 Jul 16].

Personal Author: Ray, Robin; Source: Grief Matters: The Australian Journal of Grief and Bereavement, Vol. 9, No. 1, Autumn 2006: 8-11 Document Type: Journal Article ISSN: 1440-6888 Subject: Caregivers; Grief--Psychological aspects; Caregivers--Psychology; Loss (Psychology); Amyotrophic lateral sclerosis; Amyotrophic lateral sclerosis--Patients--Home care; Peer Reviewed: Yes Affiliation: (1) Lecturer, School of Nursing and Midwifery, La Trobe University, Victoria 3086, Australia, email: r.ray@latrobe.edu.au, tel: (03) 9479 5926, fax: (03) 9479 5988

Database: Families & Society Collection