One mum’s utterly gripping account of life with dementia as Barbara Windsor reveals her Alzheimer’s battle
As Barbara Windsor reveals her own dementia diagnosis, we share an NHS manager's extraordinary first-hand account of early-onset Alzheimer's
PEOPLE often ask me what it’s like to have dementia on a bad day, but it’s hard to remember; it’s as if I’m not there.
On those days I can feel the disease in my head.
A fog descends, confusion reigns, even my own handwriting is a mystery, the words written by a stranger who slipped away while I slept.
It all started in 2012: I was 56, healthy, a non-smoker, and I worked as an NHS manager at St James’s Hospital in Leeds.
But there was an impending sense of something I couldn’t put my finger on.
It had lingered for a few months. Everything was getting slower.
On bad days, my mind couldn’t instantly recall names and faces and places like it used to.
It just wasn’t me.
September 2012
I’m the one my colleagues nickname "the guru" because my recall is so sharp, because I can problem-solve in a second, remembering who works night shifts, who needs which day off.
I’d brought up my two daughters - Gemma and Sarah alone since their dad left when they were four and seven. It was hard, but there was always a way; that was my motto.
But the snowdrift that seems to have settled in my mind remains, along with a lack of energy and the same feeling I can’t put my finger on.
One day I’m out running, and I fall flat onto the pavement. There are another three falls in quick succession.
Later, I am sitting in a hospital waiting room.
The sensation of a head half-filled with cotton wool has continued for months and this weekend had been much worse.
When I got to work on Monday, my colleague noticed how my words were slurred, and now I’m here.
In the end, doctors blame a hole in the heart for causing a stroke.
March 2013
I’m back at work after the stroke.
The things I do forget – names or numbers, places, people – well, that’s understandable. It’s because I’ve been off for months, or at least that’s what everyone says, and I start to believe it myself. Almost.
But two months later, I’m sitting in front of a consultant neurologist, trying to pinpoint the vagueness I’ve been feeling.
What sense would it make to her if I told her about that thick pile of yellow Post-it notes scattered on the carpet by my bed had got thicker and thicker, as I woke numerous times desperate to remember all I’ll need to get through a day in the office.
"My mind just doesn’t feel … sharp," is all I can offer, and the consultant nods and writes down some notes.
A month on, I’m seeing a clinical psychologist called Jo.
"Is there anything I should do to help myself in the times when my mind feels particularly … foggy?" I ask.
"There may be times when you become disorientated, the fog will descend and your surroundings will be unfamiliar,” she says. "But the most important thing to remember is not to panic, give the fog time to pass, let the world become clear again. And it will."
That’s all. She’ll see me again in 12 months.
I’m sitting opposite Sarah while she holds a letter in her hand from Jo.
"It is possible that this is a profile of the early stages of a dementing process," it reads.
A few weeks later, another letter, this time from the neurologist. "To be certain [of this representing an early dementia] we would need to demonstrate deteriorating cognition in six to 12 months’ time. If no change I would diagnose mild cognitive impairment," he writes.
Sarah and Gemma are with me as I read this. The three of us sit quietly.
I look at my two little girls, that’s nothing to do with my memory, just the lens a mother always views her children through, the urge to protect them never dims.
September 2013
Six months later, I’m in a meeting at work.
I glance around the table at the familiar faces, and yet I can’t recall their names. Tiny seeds of worry whittle away inside as I shuffle my paperwork, confused about where to start.
I look up. "We expect to start rolling out the system in two months’ time …" I pause, every eye upon me, but the word I need next is lost - there’s a blank in my mind where it should be.
Silence hangs in the room, and for a fraction of a second I’m sure they’re wondering if I’m fit for this job. I feel stupid then. Stupid, frustrated, confused, humiliated.
An hour later, the meeting finishes, people file from the room, and then it comes to me. The word I was trying to remember was "and."
I wake and sit on the edge of my bed, looking down at my feet. Where once there was pale green carpet, I’m now crunching yellow Post-it notes between my toes.
The pile has grown thicker after another restless night of waking, turning, remembering something else I’ll need for the next day. I need to move, but I can’t think what I do first. Dress? Eat? Shower?
I’ve become a master of disguise, but there are days when I can’t camouflage the confusion. I dread the knock on my office door, the blank I know will be written across my face.
A sister on the ward who phones me and I don’t know who she is. I buy time, ask her to come to my office. When she does, I realise we’re friends.
"I thought I’d done something to offend you!" she’d said. And I laugh it off, blaming a busy day.
June 2014
I’m sitting in front of Jo again.
She starts going through the same memory tests as before. But when she asks me to name objects beginning with a certain letter, nothing comes. She asks me to draw a clock, I don’t know where to start.
It’s obvious to both of us that there’s been a decline, fear is gathering in the pit of my stomach.
Over the next two weeks, I do more memory tests. They don’t go well. "What do you think it could be?" I ask finally.
She looks into my eyes, and her voice is calm and steady. "Possibly dementia, but I can’t be completely sure, not until we get the results of all the tests."
"Of course," I reply. But a numbness embraces me, and a sadness too, a feeling that this is the end because that’s all I know about dementia - the blank stares, the helplessness, the confusion.
In bed later, I lie awake, unable to push dark thoughts from my mind. Is it really dementia? Might the doctors be wrong?
July 31, 2014
I’m sitting in the cramped office of the neurologist as she shuffles through her paperwork.
As she starts to speak, I notice the pity in her eyes.
It’s early-onset Alzheimer’s.
Nothing prepares you for the feeling of emptiness.
It’s not so much a fear of death that hits me, but a sense of time running out.
That’s what dementia steals, the future you imagined all laid out in front of you, with no idea when something more final might come.
"Good luck," says the neurologist as I leave her office. I won’t see her again, because there’s no follow-up after diagnosis.
September 2014
I’ve been relying on the Post-It notes I write to myself, reminding me to take my pills, book a dental appointment. But they’re starting to fail me now.
What good is a note to yourself if you forget to look for it?
I pull the calendar down from the wall and start to fill my iPad with doctor’s appointments, friends’ visits, a daily reminder to take my tablets and to put the rubbish bins out.
I hesitate over October 17th, Sarah’s birthday, just a few weeks away.
Surely I’d never forget a date as important as that - but just in case, I set a reminder for the evening of her birthday. Anyway, I always ring her in the morning.
October 17, 2014
I go to work, then come home and start making myself something to eat. I’m humming along to the radio when I hear a ping.
Puzzled, I open up the iPad. And when I see the reminder, my insides turn icy-cold. It can’t be. There must be a mistake.
I check the date on the calendar, abandon my meal and reach for the phone. I’m shaking as I dial Sarah’s number.
"I’m so sorry," I say. "I-I don’t know how it happened."
"It’s OK," she says. "You just forgot."
Nothing can ease the sadness, the mortification: I’ve forgotten my own daughter’s birthday for the first time in 34 years.
My logical mind knows that it’s the disease, not me, but on a day like today it’s hard to tell us apart.
February 2015
Six months after the diagnosis. I tell my managers, my heart beating so hard I wonder if it can be seen through my shirt.
A month later, I’m having a meeting with the occupational health consultant. "I’m still managing my team efficiently—" I begin.
But she’s already filling in a section headed: "Incapable of meeting the demands of her NHS employment."
My fate has been decided.
It’s Sunday, and I’m ironing at home in front of the TV.
I’ve discovered upsides to dementia. I can watch The Great British Bake Off again and again.
When I get to the series finale, the winner is always a surprise to me, and then I go right back to the first episode and get to know the contestants all over again.
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A progressive illness can focus the mind in a very special way, and I’ve resolved to find out all there is to know about this dreadful disease.
I vow that I’m going to remain independent for as long as I possibly can.
There’s always a way.
Somebody I Used to Know by Wendy Mitchell and Anna Wharton, published by Bloomsbury on the 1st Feb 2018, is available to buy