Somebody I Used To Know

Wendy Mitchell’s memoir, Somebody I Used To Know, gives us dementia from the inside out, from the first, fearful inklings that something is wrong to the nitty-gritty of daily life with a progressive disease that gradually forces her to give up those things (from her work to her running) that make her who she is.

As such it is one of the most honest, vivid accounts of living with this condition – in Wendy’s case, Alzheimer’s disease diagnosed when she was just 58 – that I’ve come across. It is also much more.  It’s a multi-layered book: reflective of Wendy’s no-nonsense character yet also offering profound insights into the resilience of the human spirit.

A single mum with two daughters (their dad left when they were seven and four), Wendy has always been independent, thrifty and organised.  She’s also been very busy, working for 20 years as a non-clinical team leader in the NHS and, ironically, renowned for her elephant-like memory.

This all changes when, out for one of her regular runs along the River Ouse, she falls, for no apparent reason.  In fact, she’s suspected that something’s been wrong for a while though she can’t quite put her finger on it.  And then she falls again.  And again.

It takes over three months, hospital stays, neurological tests and scans, two months off work before the D word is mentioned in a letter from her clinical psychologist.  “It is possible that this is a profile of the early stages of a dementing process”.

“But it can’t be that,” her (now adult) daughter Sarah says.  “You’re so fit and healthy.  It doesn’t seem fair”.

And of course, it isn’t. Wendy’s old life has veered off track, she’s on her way somewhere else – or, as she sees it and tells it, to becoming someone else.   “We wouldn’t get on now, you and I,” she tells her younger self.  “We like different things.  You love the hustle and bustle of a busy city, whereas some days I lose hours just looking out of a window at the view.  Just looking.  Just still”.

Wendy with her daughters Gemma & Sarah

It is through acknowledging the changes taking place in herself that 62-year-old Wendy realises that her dementia – hated as it is by her, as much for the havoc it will wreak on her daughters’ lives as on her own – has given her a rare perspective, focussing the mind “in a very special way”.   Yes, it is gradually stealing everything that made her who she once was.  Yet she is still Wendy.  Still determined.  Still strong.  She knows that dementia cannot take away the love she feels for her daughters (which permeates the book), or they for her.

Wendy may experience “a real, visceral grief at saying another goodbye, this time to baking”, anger and frustration at being abandoned post-diagnosis by an NHS for which she’s worked for two decades, and mortification when she forgets her daughter Sarah’s birthday for the first time in 34 years.   But she can, and does, start a daily blog to serve as her memory (which ultimately enables this memoir to be written), set reminders to ping on her Ipad, become a Dementia Friends Champion, campaign to raise awareness of the condition, promote and participate in research.  Her new life becomes as busy, in different ways, as that of the person she used to know, and be. Continue Reading →

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Singing Together

Anyone out there remember Singing Together?  It ran on BBC radio for 60 years from 1939, when it was introduced to reach schoolchildren evacuated all over the country during the war.  At 11 o’clock every Monday morning school teachers across Britain would tune in and their pupils would, well, sing together.

Back in the ‘60s, my hair in plaits, I was one of them and, hopeless warbler as I was (still am), to this day I can remember the friendly voice of presenter William Appleby and many of the words to Pretty Peña, also where I was sitting in my primary school classroom (front left beside a mesmerising painting of a cliff soaring over a turquoise sea) when I belted them out.

The great thing about the weekly programme, first aired on the home service for schools and then Radio 4, was that no matter where we children were, for 20 minutes at the start of the week, we would all be singing the same songs together.  It gave a sense of comforting continuity and community which, even now, almost half a century later, I can conjure up.

I must admit I’d forgotten all this until I recently attended the launch of an important new report by the Commission on Dementia and Music, and no less a person than the internationally renowned soprano Lesley Garrett reminded me.

It turns out that Miss Garrett CBE, as well as having the most gorgeous voice, is patron of the Lost Chord, a charity dedicated to improving the quality of life and well-being of those with dementia, using music.

Like so many of us involved in the dementia sector, Miss Garrett has a personal interest in the subject.  She told us all that when her Auntie Joan (known as AJ) developed Alzheimer’s – and even when she could no longer remember her own children’s names – “the sound of music she adored sung by someone she adored could bring her alive.  She would open her eyes, shake, and tears would pour down her face”. Continue Reading →

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Dancing With Dementia

Sabrina Gargano & Luke Birch
Photo Julia Testa

I studied ballet for fifteen years and, for me, a trained dancer’s body responding to music is one of the most powerful communicators of emotion, often transcending words.

So I was fascinated to hear about a professional dance theatre project inspired by people living with young onset dementia and their families and funded by the Arts Council of England.  The collaborative work, led by choreographer and dance movement psychotherapist Beatrice Allegranti, aims to confront the taboos of loss, hope and intimacy so often found swirling around dementia.   She explained how it evolved from conversations with families affected by dementia, both those who have it and their relatives – conducted in their own homes.

Beatrice listened and observed during the sessions, noticing moments and what she calls, “vignettes”, when those with dementia and their loved ones made certain movements or uttered words such as “I’m grabbing the time I have left”, “I’m like a baby” – or, from partners and adult children, “What is it to be human?”, “I hear your voice now”.

Beatrice and the professional dancers, all in their thirties, then co-choreographed bespoke pieces for each of the eight families which they performed for them, invited them to participate in and discussed with them, before blending parts of all eight into one work for public performance entitled, intriguingly, “I’ve Lost You Only To Discover That I Have Gone Missing”.

The result is an extraordinarily moving piece that somehow evokes dementia – what it is to have it, to live it, to see it in someone you love – in all its tangled complexity and rawness, with occasional moments of quite sublime tenderness.  No mean feat. Continue Reading →

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Extraordinary Individuals


Dr Hannah Critchlow addresses the audience at Neurosense

I often say of my writing that other people go out and actually do things while I merely observe and record in an attempt to join the dots, to make sense out of what I’m hearing and seeing, and hopefully offer a few meagre insights.

Never was this truer than the other night, when I strayed out of my normal dementia and elderly care zone into the world of neuroscience for an event in which experts discussed the links between the brain and personality, what happens when this is damaged or changed and what the future looks like for healing the brain.

Speakers at the NeuroSense event in London included three professors (one also a consultant neurosurgeon) and a young neuroscientist named as one of the UK’s top 100 scientists.  Undaunted, I took my seat as a well-matured English graduate and hoped to goodness I could keep up.

I needn’t have worried.  Dr Hannah Critchlow whetted my appetite with a couple of riveting stories.  The first involved Phineas Gage, a 19th century American railroad foreman who miraculously survived when a stray spark ignited the gunpowder he was tamping down with a 6kg iron rod, rocketing the rod into his skull, through his brain and out the other side.  In neurological circles the story has near legendary status.  Gage lived pretty well for another 12 years and the incident revealed the brain’s ability, in certain circumstances, to regain its health.

The second tale was that of 27-year-old Henry Molaison, who underwent experimental brain surgery in 1953 for his severe epilepsy.  The operation cured the young American of his epilepsy but robbed him of his ability to lay down memories; the next 55 years of his life were spent living in the present moment.   As someone who writes primarily about dementia, my interest was piqued and, once home, I researched the unfortunate Mr Molaison.

Suzanne Corkin, professor of behavioural neuroscience at the Massachusetts Institute of Technology, spent much time with Molaison over the course of his life, writing a book about him – part biography, part case study – called, fittingly, “Permanent Present Tense”. 

Observer journalist Tim Adams says of the book, “One of the fascinating, unsettling impulses in reading Henry’s life is that sense of identity being a bundle of all of the stories we tell ourselves about ourselves. Henry loved to relate the few clear memories of his childhood, over and over, though he lacked a context for them”.  Again, there are echoes of those with dementia. Continue Reading →

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