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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

Two months later, my mother was unable to swallow and was admitted to the hospital for intravenous hydration and nutrition. Four months later, she was 'locked in' her body, unable to speak or move, and able to communicate only through blinking her eyes and moving her head slightly.

5. Waiting for her release

Her mind was unaffected, and her big blue eyes would follow the nurses and carers as they went about their daily routine of making their ‘patient’ with MND as comfortable as possible, whilst she lay in her body waiting in silence for her release.

6. What I learned

What I learned from the experiences of being a professional family caregiver was that health care professionals know very little about the person they are caring for, and far more can be done if we are to provide person-centred care for people at their end of life.

If you are a health care professional, and you are wanting to provide a holistic, person-centred approach to care, please get in touch to find out more about my interactive e-learning course.

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