Stories of dementia reveal what remains and what is lost

Somebody I Used to Know. Wendy Mitchell (with Anna Wharton). Bloomsbury. 

Dementia is often the subject of awkward observations and jokes about our own behaviour, probably through fear and ignorance.

In Somebody I Used to Know, Wendy Mitchell (with journalist Anna Wharton) tackles that fear and ignorance as she takes us through her experience of early-onset Alzheimer's, diagnosed in 2014 when she was 58.

At the time, she had a hectic job with England's National Health Service, managing rosters for hundreds of nurses. She was renowned for her excellent memory and grasp of detail.

She first noticed a fuzziness, a lack of sharpness in her thinking; "an inkling that I am functioning around average".

Mitchell also had falls while out running when it seemed her legs were having difficulty understanding what they should be doing. Tasks that she used to complete with ease became puzzlingly difficult, such as turning right while driving.

Referred to a neurologist and a clinical psychologist after a mystifying stroke, her dementia was eventually diagnosed.

Understandably, there are many sadnesses in this story, as Mitchell has to leave behind things at which she used to excel. A keen baker, she found following a recipe difficult, confused about the meaning of such measures as teaspoons and tablespoons.

Later, when preparing meals, she would barricade herself in the kitchen to stop herself wandering off mid-cook.

It is compelling reading, cleverly incorporating flashbacks to her earlier self so we get a well-rounded view of her life and her tenacity as a single mother of two (now adult) daughters as the book progresses.

This is a story of one gutsy woman, living alone, who has tried to find ways to adapt and cope with each challenge thrown at her by the disease. She writes a blog Which Me Am I Today?. Also, she is actively involved in raising awareness about the disease and encouraging people to recognise that those with the condition still have much to contribute.

Song for Rosaleen. Pip Desmond. Massey University Press. 

Closer to home, another compelling read is Wellington writer Pip Desmond's memoir of her mother, Rosaleen, born in 1929, who spent her early life in Roxburgh.

Rosaleen had vascular dementia, first noticed when she was in her early 70s, a widow living alone in Wellington.

Song for Rosaleen is an honest account of how Desmond and her five siblings coped with the changes in their mother and worked out how best to care for her. Unsurprisingly, it was not easy and they did not always agree about everything.

Through this experience, Desmond developed a much deeper understanding of her mother, coming to realise that the fierceness unleashed during her illness was "her essence, not an aberration".

"Mum wasn't two people, one before and another after she got dementia. The disease robbed her of almost everything but it freed her intuition."

One regret Desmond has is that the family did not complain about the poor care her mother received in a retirement village.

Later, another family did complain about the treatment of their mother and a Ministry of Health audit revealed significant problems.

 - Elspeth McLean is an ODT columnist


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