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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11 thoughts on “Dementia Revisited

    • Thanks. I have the Hilary Mantel collection of short stories from the library and a stack of unread books on the table, but having enjoyed listening to this book, I may be the market for another audio download so I can *read* while I dust!

  1. It certainly going to have a high status if the adverts that are around are anything to go by. It is something that will affect more and more of us I fear.

    • Fear may not be the best spur for openminded openended debate. Have you read Atul Gawande’s Being Mortal? Or heard of the remarkable Bill Harris?

  2. I don’t think I could read the book this summer, Isobel. Maybe this winter. My Aunt Margie’s battle with losing herself is still hard to deal with. It is just me and CH. I know that I will take care of how it end for me before I let someone I don’t know take care of me at the end… or when I know the end is near.

    • My goodness. I just want to be sure I am somewhere where despite whatever ailments I have, I still have some autonomy and privacy; where there are animals and good vegetarian food; where my nails are kept short and clean, and my clothes are not all washed at the same high temperatures and then dried in a drying machine on full heat; where the sound of other people’s music and televisions are not inflicted on me throughout the day; where there are friends and interests and mental stimulus alongside the actual physical care of me; and cotton sheets on my bed.

  3. Yes Isobel, I want all those things too. I don’t think it would be possible here in the States in even the finest long term care facilities with extended care insurance and adequate finances. Elder care is in sad condition here and unless you have somebody who truly cares for you, you will not be taken care of in a facility. If CH dies before me, there really is no one to take care of me. My hope, when my time comes, that CH is there to watch over me and that there is a compassionate hospice staff to help me let go. I really don’t spend a lot of time thinking about this, but CH and I have, of course, had to have the discussion of what if and what we need to do.

  4. I want the same as you, Isobel. What scares me is that I won’t be able to fight for what I want. That is why I am talking to those who are close to me so everyone knows what I don’t want – and most importantly what I want. I think I need to write it down and put it with my advanced directives.

    • Yes. The trouble is the care homes hold the cards. their definition, as I discovered with Mother, of personalised care, is not the same as mine. Even the things we were told would not be a problem were not adhered to.

      I think this is a campaign that needs to be waged at the highest levels and internationally. Locking people up so they can die of boredom and frustration but *safely* is not the answer.

      • You are absolutely right. We have found here in the states, that the only way to get any kind of care in a home is to have someone visit daily. I know you understand that any campaign will be fighting against profits. I think there needs to be a new generation of people who are more interested in doing what is right than making a lot of money.

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