Dementia Revisited

Home from book club and I am tired, but my mind is alert and I know if I go to bed now, I am going to be wakeful, eyes shut against the darkness while my thoughts rebel against sleep.

The book we discussed was Elizabeth is Missing. A remarkable first novel from a a young women who seems to have garnered uncanny insights into the minds of those living with dementia.

Obviously it triggered lots of personal responses. I am not the only member of the book club who has (had) a close and dear relative with dementia. Without Michèle to keep us on the straight and narrow and keep the discussion to the literary merit of the book, the conversation was wide ranging, anecdotal and personal.

Initially, I didn’t think I could read this book. The first few pages brought back clearly and painfully the dealings with outside bodies when we were trying to manage Mother’s dementia. So I bought an audio version and largely listened to it. That seemed to give the words space, and allow my thoughts to range freely.

It reminded me of things I had forgotten; how Mother, the world’s biggest declutterer and tidyupper – you only had to leave a cup of coffee on a coaster for a moment for it to be whisked away, so that when you went to take another sip the cup was already washed up and restored to its place in the cupboard – turned hoarder and lax washerupper; how she wrapped odd items in tissues, napkins; how she disappeared her glasses and other objects – we once realised she was walking about with a knife up her sleeve; how none of these things made her stupid. She was often confused, lost and frightened; trying to make sense of a world which had suddenly and inexplicably become alien, but she could still have moments of startling clarity, moments when I would look into her eyes and see the woman who was my competent, industrious, capable mother.

The book describes Maud’s trajectory from occasional forgetfulness to advanced dementia sensitively and compassionately. The frustrations of her family, particularly her daughter Helen, are well delineated. I identified with Helen. Her story mirrored parts of my own. That gradual understanding of her mother’s bewilderment, the realisation that while Maud’s behaviour may be irritating and worrying, it is not deliberately so; the way she becomes her mother’s champion, becomes more tender and protective.

If this book raises awareness and causes debates about how we view and treat those living with dementia; what we can do to balance safety and independence; how those living with dementia can still make choices, have autonomy and live their lives to the end without their basic freedoms being denied, it will have achieved much.

If you look at my sidebar you’ll see the word dementia in quite large type. That’s because I have written about it a fair amount. Here’s one post of many. More and more of us are likely to develop dementia as we age. If you are someone like me, without children, the likelihood is you will end up in a care home with someone else making all executive decisions about your life on your behalf, from what you wear, what you eat, how your hair is cut, to what access you have to the outside world. Your passions and interests are likely to have a very low priority. You will need, at the very time when you struggle to do it most, to fit in, to conform to an idea of what you should or should not like and do.

It sounds like hell on earth to me. Let the debate begin, and let our standards of care be dictated by what is best, not what it costs in pounds sterling.

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