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Family Carer Support

Updated: Jul 1, 2022

Research into lived experiences of being a family carer

1. Background

People can live for many months without knowing why their body is failing prematurely before being diagnosed with motor neurone disease (MND); a terminal neurodegenerative disease which can be experienced as ‘devastating’ for the person and their family.

2. Aim

This study aimed to explore the meaning of supporting a loved one with MND to die.

3. 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 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).

4. Conclusion

Dying with MND is a complex phenomenon. When a person can no longer move and communicate, relationships between those involved in end-of-life care are challenging. A person with MND needs the support from those acting as power of attorney to make their end of life their own, and they themselves need support 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.