I could barely read the extract of Katherine Heiny’s book about her mother’s descent into Lewy body dementia (Weekend, 17 April). It is such a tragic condition; my wife has Parkinson’s and Lewy body dementia, and has been in a care home for the past three years. She is looked after with great compassion by dedicated, professional staff, but despite 24-hour attention, she only weighs 42kg and is immobile.
Some days she is chatty and recognises me, but her speech is so distorted now that I can no longer understand her. The care staff have covered the walls in her room with photos of our four children and six grandchildren, and with cards and drawings, and most of the time she just sits and looks at them.
I tell her what I have been doing and she lets me feed her – chocolate is her favourite – but it takes about half an hour for her to eat a small tub of chocolate yoghurt. There is no cure for either Parkinson’s or this type of dementia. Our family is deeply indebted to our local council for its financial support, to her carers who work long hours for not much money and to the managerial staff who have had such a difficult job for the past few years, not really helped by government “advice”.
I miss, and grieve for, my wife of 58 years, but at least now I am able to sit with her and hold her hand.
David Weaver
Cranleigh, Surrey
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