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Experiences of being a professional family caregiver

Updated: May 23, 2022

1. Background to experiences

Nine months before her diagnosis, my mother was already experiencing the degenerative effects of MND in her speech and movement. Looking back, she also had other symptoms.

2. Linking theory to practice

As an occupational therapist, I could relate my mother’s experiences to Wilcox’s (1999) theory of ‘doing, being, becoming and belonging’. I considered that she was unable to undertake daily activities and unable to be an independent woman. She could not be, could not become, and could not belong. This reduced sense of identity, purpose, and meaning affected her mental well-being before she was diagnosed with MND.

3. Receiving a diagnosis

Receiving a diagnosis of PBP MND was devastating; we were told that her MND was progressing rapidly, and palliative care was recommended. The palliative care team were my professional colleagues and were used to caring for people with MND.

4. PBP illness trajectory