Background: People can live for many months without knowing why their body is failing prematurely before being diagnosed with motor neurone disease (MND). This terminal neurodegenerative disease can be experienced as ‘devastating’ for the person and their family.
Aim: This study aimed to explore the meaning of supporting a loved one with MND to die.
Methods: This study uses reflection and autobiographical stories to connect with broader cultural, political and social meanings and understandings of dying.
Findings: Four themes were identified relating to the end-of-life trajectory of MND. Loss of person (lived body experienced in silence); loss of explored relationships (lived relations are challenged); loss of home and loss of time (lived space and lived time take on new meaning); loss of future (dying—facing it alone).
Conclusion: Dying with MND is a complex phenomenon. When people can no longer move and communicate, relationships between those involved in end-of-life care are challenging. A person with MND needs support from those acting as power of attorney to make their end of life their own, and they need help to find meaning in their suffering. This autoethnographic reflection provides vicarious experiences for nurses and other healthcare professionals working with people with MND and similar conditions.
Keywords: l Autoethnography l Family carers l Motor neuron disease
Reference:
Harris, D.A., Jack, K. and Wibberley, C. (2019) Making her end of life her own: further reflections on supporting a loved one with motor neurone disease. International Journal of Palliative Care Nursing, Vol 25, No.6, 284-292 https://doi.org/10.12968/ijpn.2019.25.6.284
