Tuesday 3 July 2018


I was just writing about Alzheimer's cures and cares.  That coincided with The Beloved passing on a book to me called Somebody I Used to Know by Wendy Mitchell. The somebody Wendy used to know is herself before she was diagnosed with early-onset dementia in her late 50s. She was then a super-competent hospital administrator living alone in Yorkshire, her two daughters having flown the nest to pursue their own lives and careers.  The book starts by relating an accident while running, when her legs suddenly stopped obeying the unconscious signals from her brain. That's interesting because we usually associate dementia as only affecting the 'higher' cognitive functions like memory, concentration and speech. For many of us these are what give meaning, not only to our own lives, but also to those about whom we care. One of the early influences / inspirations for Wendy Mitchell was Keith Oliver, a headmaster who started living with early-onset dementia a couple of years before her.

My grandfather was a freemason, eventually Master of his Lodge. He lost one eye in middle age during the blitz in Dover, but he had a spare so was hardly handicapped by the loss. As kids we would speculate about which was the glass eye and whether he took it out at night like his false teeth. In his 70s, the retina dropped off the back of his remaining eye and he was plunged into literal and psychological darkness. His masonic pals came to visit for a while. But when it became clear that he was never again going to be the life and soul of their masonic romps, they fell away and left him to his own devices. I still feel that a bit more care and attention from his 'pals' might <whoop whoop self-interest alert> have pulled him from the slough of despond and made him more rewarding company - quite apart from showing a bit of compassion for a man fellow mason laid low by adversity.

I'm about halfway through Mitchell's book and clatter of a incidents require me to make an interim report on how "to deal with" Alzheimer's and dementia. There is a <whoop whoop self-interest alert> here too. It's really hard for the person inside the dementia; it's not a drift off into a benign indifference. It's rather a fight to maintain as much normality as possible in as bright a way as possible. Negative language is not helpful here. If you say your Mum suffers from rather than lives with dementia, then the old lady starts to suffer and feels a little crappier than she strictly needs to. If you think, let alone say in her hearing, that Mum is a burden to herself and others, then the bottom falls out of her day. And you want to go easy on the does s/he take sugar front and assume that Mum no longer has her own preferences, desires or wishes by answering for her. And don't just give up on your old friend because you hear she's gone demented or into A Home. Dementia is progressive: it takes years before you're 'gone'. Meanwhile affection, kindness or courtesy request-and-require you to go visit, to send a card. Don't call on the phone, though: that is confusing because the voice is disembodied and the chatter too fast to cope with effectively. Don't stop visiting because you don't know what to say: most conversation most of the time is inconsequential chatter essentially the same as picking lice out of each other's fur. One of the last things to 'go' is a sense of humor: there's still plenty to laugh at and that's a more appropriate response than getting angry.

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