BEFORE I FORGET
Wendy Mitchell was diagnosed with early-onset dementia at the age of 58. In her profoundly moving and courageous memoir, she describes what it’s like to lose your identity.
What it’s like to have dementia – a courageous memoir
I’ve been entertaining silly thoughts. One that passed through quickly was a brain tumour. I study the doctor’s face to see if he’s thinking the same, but he gives away no clues. Instead, his shoulders slump away from his ears and he attempts an expression of something like empathy.
“You’re fit, you exercise, you eat well, you don’t smoke and at 56, you’re relatively young,” he says.
“But there comes a time when we all have to admit to ourselves that we’re just slowing down.
“You work hard, Wendy,” he sighs. “Maybe take some time off.”
I’m the person at work who knows the system for rostering nursing shifts inside out. I’m the one my colleagues nickname “the guru” because my recall is so sharp, because I can problem-solve in a second, reminding anyone who asks, who works night shifts, who needs which day off.
And then it happens again. I’m out running, crossing a road, convinced that I can get ahead of the car that’s about to turn left across my path.
I see it coming and suddenly decide to dodge it, but something is lost, some message between my brain and my legs fails to get through fast enough, and instead I stumble, falling flat on to the pavement again.
There are three of those falls in quick succession.
We wouldn’t get on now, you and I. 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.
You were good at your job – a non-clinical team leader in the National Health Service.
Your home life had been just as frantic as a busy single mum to two girls.
“Hole in the heart. It’s quite common; it may have been the cause of the stroke,” the doctor says. And so with that, they seem happy to have some kind of explanation. Now thoughts turn to discharging me, and I’m returned to my bed on the ward with a hole in my heart but happy to be heading home.
It is March 2013 – three months since the stroke – and I am back at work.
I’m sitting opposite [daughter]
Sarah while she holds a letter in her hand, a letter from Jo [clinical psychologist] after our last meeting. I scan her face as her eyes do the same to the page, taking it all in, the clinical-speak making more sense now she’s a few months further into her nursing training.
I see her brow furrow and I remember the moment when my own did the
same. It’s one line below a heading that says “Opinion” in thick, bold type. She looks up and I catch her eye.
“Dementia?” she says.
An appointment for a SPECT scan arrives in April 2014. It’s a 3D scan of my brain, which the neurologist says may prove more helpful than the MRI.
A few days later I’m driving my car... I need to turn right, but how? How do I turn right?
I made it home that day, and put my keys down in their usual place, in a red dish on the hall table by the stairs. They sat there, looking back at me whenever I passed. Useless, nonfunctional, incompetent, idle.
“Thank you for contacting the Alzheimer’s Society...” it starts. My heart is racing at the secret I’ve kept from the girls. I read the email quickly, as if it’s sent from an illicit lover, my eyes scanning for sweet nothings, my finger ready to click it closed if anyone appears by my side. And then I find it, an answer to my question: a dementia diagnosis would entitle me to a free bus pass.
If I could ask you anything now, it would be: When did you decide to leave me? When did you decide that I was to live a different life without all the bits that made me? It’s hard to remember those final experiences of things I so enjoyed, like desperately trying to catch a drifting dream the next morning. I wish I had known then that they were the last times I would do those things I loved and I would have enjoyed them all the more for knowing: the last run along deserted streets, the last batch of cakes, the last drive behind the steering wheel. Instead you sneaked out on me, you didn’t tell me you were going, and so I never knew you’d taken bits of me with you. You didn’t give me a chance or warning, so I couldn’t try and rescue those days. I simply discovered one day that they were gone, gone for ever.
But if I had to pinpoint the moment you left, I know which day I would choose, the day I think you left me properly for the first time.
This day was different from any that had come before it. It wasn’t just confusion. It was a complete blank. A black hole. It wasn’t so much, What did I get up for? What was I about to do? It was, Where am I? My mind was blank, my intention as confused as the speckles on the green linoleum beneath my feet. Where was I? What was this place? I felt my heart thumping with questions, pounding for answers from my brain. But nothing came. I stood and froze for a second. I tried again, my eyes flickering round this room; a desk, noticeboards pinned to the walls, box files scribbled with handwriting I didn’t recognise. My heart rapped harder against my ribs and I replied with a long, deep breath, which quietened it for a brief moment. Another breath. It shushed inside. Something was cutting through the fog that had descended on my brain. One memory. Jo told me this would happen and she told me it would pass.
Past the name on the door that I didn’t recognise, the letters that formed them as alien as their meaning. W-E-N-D-Y M-I-T-C-H-E-L-L. I walked out into the hallway, looking straight ahead, resisting any urge to search the walls for clues, ignoring the paperwork that clung to them, knowing instinctively it would only add to the confusion. I tried to block out the hum of voices I’d never heard before. I walked slowly, trying to concentrate on keeping my breath steady, on blocking out the laughter, resisting the urge to ask if they’re laughing at me.
Don’t panic, I told myself.
My brain was cloudy, a fog had descended, like the peak of a mountain on a clear day where one minute I could see for miles, and then suddenly a chill in the air indicated the clouds were forming. Yet for me, there was no warning, no change in the temperature to show that change was coming. I’d got up from my desk just like any other day, and suddenly I was at the top of that mountain, alone, the clouds obscuring my view to such an extent that I couldn’t see any landmarks I recognised, not my desk, nor my phone, my stapler, my name on the door, or even my colleagues.
And so I waited, because Jo’s words were the only clarity in my mind. Just sit and hold on for the mist to clear. And so I did. In my tiny cubicle, my eyes flickering between the floor and the speckled pattern of the wall tiles, the toilet-roll holder and the sheet of two-ply that hung limply from it.
And then there it was. The cloud was lifting. I looked up as if I’d been dreaming. I was in the toilets at work. Of course I was.
I’m 58 years old, and I’ve just been diagnosed with young-onset
“I don’t want to just sit here and wait for this disease to make its march on my mind.”
Alzheimer’s. I was due to retire at 66. That leaves an eight-year deficit. How will I fill it? I don’t want my girls to become my carers.
I look around my spare room and feel a sudden desire to pin these photographs all over the blank walls, to create a space that I can wander into whenever the fog descends. All the very best moments of my life captured on film.
I had no idea then that I would develop a disease that would steal memories from me. That’s what Alzheimer’s does: it’s a thief in the night, stealing precious pictures from our lives while we sleep.
Will it be a slow goodbye or a quick one? The uncertainty is what fills my chest with panic. The not knowing how quickly time will become irrelevant. I thought I had life under control.
I have been hoping to carry on working for as long as possible, but hiding my diagnosis is becoming harder every day. In fact, it’s becoming more exhausting than the job itself.
Have you considered ill-health retirement? I can help with all the forms you need, she [an occupational health consultant] says, looking through my file. She has a form in front of her where she needs to write her recommendations, and I sit watching, as she begins to fill in one particular section: Incapable of meeting the demands of her employment... My fate has been decided.
I want to do something now; I don’t want to just sit here and wait for this disease to make its march on my mind. I balance my laptop on my knee and type in the details for the Alzheimer’s Society, and that’s when I see the words: Be Involved.
A few days later I open an email explaining that the Alzheimer’s
Society is putting together a research database; they want to know whether I’d like to help raise awareness.
I lost yesterday. I don’t know what happened to it. People often ask me what it’s like to have dementia on a bad day, but it’s hard to remember; it’s like I’m not there.
The key is always calm thoughts, waiting, looking at anything that distracts me from the fog; photographs in my memory room, a smiley face, a hill, a lake, a daughter.
“Hi Mum, how are you?”
I go to speak, expecting the fluent me who has been zipping instant messages back and forth. Instead, something else happens. A stammer, a hesitation, that search for the right word. When I do say hello, it’s with uncertainty. I sound almost childlike.
“H-hello. Good... th-thanks.”
Who is this? Who am I?
I finish my porridge and put the bowl on my bedside table. Reaching for my iPad, I turn it on. I know the process to restart myself. I open Solitaire and tap the cards one by one, slow at first, missing my chance to move them, and then slowly it comes back to me: red ten needs black nine; two of hearts goes on top of the ace.
I’m back, I think. Almost…