Could gazing at old family holiday snaps help rescue my memory?
Diagnosed with Alzheimer’s at just 58, NHS boss Wendy was determined to fight back. And, as an inspirational new book reveals, she prayed the emotional power of a mother’s love could be the key ...
THREE years ago, Wendy Mitchell was diagnosed with early-onset Alzheimer’s disease. Though devastated, the NHS manager and divorced mother-of-two, who lives in Yorkshire, was determined to remain independent and upbeat. In part two of her moving memoir, she tells of her sadness at having to leave the job she loved.
There aren’t many of us who are content enough to live in the here and now. A mind cannot help fast-forwarding, willing a happy event to hurry towards us, or agonising over that very same future in a darker light. We go about our daily lives thinking we have all the time in the world to worry away at the minor distractions in our day: a bus running late; it starting to rain while we’re out walking; a grumpy colleague.
I’ve just been diagnosed, at age 58, with early onset Alzheimer’s disease — but I’m still perfectly capable of doing my job as an NHS manager, in charge of rostering shifts for hundreds of nurses. No one at work knows a thing. I’ve become expert at hiding lapses when I’m confused or forget people’s names.
Until one day in the office. Before that day, losing the old me — the me before Alzheimer’s — had felt like a long goodbye. This was more like ripping a plaster off. It was fast; whipped away in a second.
Suddenly everything I knew was gone. I looked up from my desk and I had no idea where I was. I found myself in a place I’d never been to before, surrounded by strangers. Where am I?
My heart thumps as my eyes flicker round the room. A desk … noticeboards pinned to the walls … box files scribbled with handwriting I don’t recognise …
I dread the strangers — whoever they are — looking up and being greeted by the blankness on my face. So I walk out of the room, through one set of double doors until I reach a safe place, and then I lock myself in.
I wait for what feels like hours, but there’s no concept of time in moments like that.
And then there it is, the cloud lifting. I am in the toilets at work. Of course I am.
October 2014
IT’S now two months since the diagnosis and I’ve heard nothing from any doctor. I’ve been given notification of one appointment at the memory clinic — but that’s still weeks away.
how can I help Sarah and Gemma, my two grown-up daughters, understand my disease if I can’t understand it myself?
I feel discarded by an NHS that I’ve worked in for 20 years. Surely I, more than anyone, know how the system works. I am the system. I manage the system. And yet the system has abandoned me.
But I know there will be a way of getting back some control. There’s always a way. PHOTOGRAPHS are scattered across my ivory lace duvet. I pick one from the pile. Sarah and Gemma, aged around six and three, chubby legs in towelling shorts on a sandy beach.
I smile as memories of our first holiday together come back to me: I-Spy games on the journey and counting different coloured cars; favourite sweets; brand-new boxes of wax crayons and bumper colouring books.
Am I really going to forget all this? It doesn’t seem possible.
I write on the back: Sarah and Gemma. Norfolk holiday. Caister. 1987. I feel an urgency, staring hard at the photograph, determined to outwit my fading brain.
I look around my spare room and feel a sudden desire to pin these photographs all over the blank walls, to create a memory room that I can wander into whenever the fog descends.
Suddenly, I’m profoundly grateful for each time that my finger pressed the shutter button. Back then, I had no idea I’d develop a disease that’s a thief in the night, stealing precious pictures from my life while I sleep. WITHOUT my realising it at the time, I’ve been for my last run, had the last drive in my car. Alzheimer’s gave me no warning: I simply discovered one day that those skills were gone for ever. Now I need to focus on what I can do — like baking, which is something I’ve always enjoyed.
So for the past few months I’ve been making cakes for a homeless charity in York.
I like it at the shelter. No one knows me there, so they don’t notice if a word abandons me mid-conversation, or if I forget someone’s name. They don’t know the old Wendy. They aren’t watching me as closely as people who’ve known me for years.
here, I’m known as the cake lady — a new identity I’ve carved from sugar and flour, and one that suits me so much better than anything the doctors have written in my notes. It feels nice to be useful.
At the shelter, I often have a cup of tea with the people who file in for something to eat on a Saturday morning. I’m reminded to be grateful for the things I still do have: a roof over my head, money to pay the bills, clean clothes, two daughters who love me.
Today, I’m in my kitchen, whipping up some cakes. I stop and scratch my head. have I added the caster sugar yet? I can’t remember doing it.
When I take the cake out of the oven, I try a corner but wrinkle up my face. It’s inedible. Too sweet. Too much sugar. It goes straight into the bin.
This isn’t the first time. Last week, the rock cakes had too much salt. Another Victoria sponge went into the bin the week before.
I can no longer follow recipes. Sadness wells inside me. I know I won’t go back to the shelter again. I don’t want to explain why I keep getting it wrong.
Better to just slip off the radar. Another goodbye; this time to something so sweet. THIS is going to be hard. Today my daughters are going to help me write my lasting power of attorney document — in effect, what my wishes are when I’m no longer able to articulate them. I fight that feeling inside that so desperately wants to protect my girls from having to do this.
When I tell them ‘I don’t want to be resuscitated’, there’s a moment’s silence.
‘But what if you just required antibiotics to recover?’ asks Sarah, who’s training to be a nurse.
I sense the desperation in her voice, and for a second I’m blindsided. I shouldn’t be here, shouldn’t be explaining to my girls why I wouldn’t want to stay in the world with them.
‘But if Mum had already lost capacity and we were making those decisions for her, she wouldn’t want to get better and live in the dementia world,’ says Gemma gently.
‘Good job we’re talking now,’ I say with a smile. ‘Otherwise you’d be falling out and arguing over decisions when I couldn’t help put things right.’
Sarah nods. My decision is filed away, done and dusted until a time when it’s needed. A time that I hope will be a long way in the future — but who knows? The girls’ father left when they were just seven and four, so life wasn’t easy back then. There was always so much to do, so much to think about, lists to write, mouths to feed. I was Mum, Dad, taxi, chef, counsellor, gardener and housekeeper, all rolled into one.
Not that I minded. I worked hard to hide any problems from the girls, painting a smile on my face, determined not to let it slip.
I couldn’t get a proper job, as any work had to fit in with school. So I slotted in as many cleaning jobs as I could.
But I knew there could be more for me than scrubbing sinks and toilets — and finally I talked my way into a job as part-time receptionist in a physiotherapy department. I was 39 and someone had thrown me a lifeline.
That job was the start of my career in the NHS, where for the first time in my life I had real independence. And I was determined to hang on to it. I’Ve been relying on the post-It notes I write to myself, reminding me to take my pills, or to 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 sit down with a cup of tea and pick up my ipad, where’s there’s an icon that says ‘reminder’. I type in: ‘7pm, take tablets.’ It’s worth a try.
That evening, when I arrive home exhausted from work, I hear the buzzer on my ipad. ‘Take tablets,’ says the message — so I do. And that gets me thinking.
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 17, 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.
As the day approaches, an alarm goes off to remind me to buy Sarah a card. I smile to myself, because I’ve already bought it.
A couple of days later, another reminder: this time to post it. Didn’t really need that. I never forget a birthday — it’s one of my things.
I settle back with a cup of tea, a warm feeling inside with each sip, a happiness that my instincts were right, that I haven’t forgotten Sarah’s birthday, that love can and will outwit dementia every time.
On October 17, 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. I glance at the clock: 6.30pm — so not quite time for my tablets.
Puzzled, I open up the iPad. And when I see the reminder [that it’s Sarah’s birthday today], my insides turn icy-cold. It can’t be. There must be a mistake. I must have done something wrong.
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.’ I can sense from the warmth in her voice that she understands, that she’s smiling, but that icy coldness in my stomach clings on tighter, even when she tells me she got my card, even after I hang up.
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. SITTING at my desk at St James’s Hospital in Leeds, I scan all the folders on my desktop and feel panic inside. Over the past five years, I’ve gathered all the information to ensure the roster system runs without fault — but much of it is now stored inside my mind, not in these virtual envelopes. With my memory becoming increasingly unreliable, how will I even know when this information is lost? Could it be next week? Next month? Tomorrow? I try to run my staff through the finer workings of the roster. ‘You know that sister can’t do nights,’ I tell them. ‘She has young children. You should make a note of that somewhere.’ But I can see what they’re thinking: ‘Why do we need to, when we have you?’ I’ve joined the Dementia Friends initiative run by the Alzheimer’s Society, and vowed to say yes to anything I’m asked to do to help the cause of dementia research.
Today, at a training session in York, I find all eyes on me. It’s obvious that I’m the only person in the room who actually has dementia.
each of us has to give a short speech, and by the time it’s my turn I’m shaking. I take a deep breath and start talking, growing in confidence as I do, thinking that the skills I learned at work are still in there somewhere.
‘So many people, when they hear the word “dementia”, think of the end,’ I say. ‘Well, I’m here before you to show how dementia has a beginning before the end — and so much life to live in between.
‘Don’t give up on us, as no matter what stage we’re at, we still have so much to give. We just might give in different ways.’
The room applauds. Now for the hardest part: how am I going to tell my NHS colleagues?
February 2015
SIX months since the diagnosis. I decide to tell my three managers by email first. That way they’ll have time to digest my news before they speak to me.
I write openly but practically, explaining clearly what I’m still capable of, what I find difficult and what might help me, knowing they want solutions not problems. And then I press send.
Two days later, I knock on my immediate manager’s door for the first meeting. My heart is beating so hard I wonder if it can be seen through my shirt.
‘How long have you got?’ he asks. I pause for a second, trying to put myself in his shoes, to take the sting out of the words. I know what he’s
saying: how long before I’m useless at work.
‘Maybe you should refer me to occupational health?’ I suggest calmly. ‘I’m not ready to retire.
‘I’ve been diagnosed with dementia, but that doesn’t mean that I’ve suddenly lost my ability to work. I just need to adapt a little so I can carry on working.
‘Occupational health will know how to facilitate that.’
He agrees, but as I leave his office he seems unconvinced. The pity in his eyes is unavoidable.
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. Any remaining faith I had in the health system evaporates. I know I still have a valuable contribution to make, but it seems as though I’m shouting and screaming into the wind. IT’S Sunday, and I’m ironing at home in front of the TV. There’s an old Agatha Christie murder mystery about to start. I pick up the first blouse in my pile, one eye on the iron, one on the telly, just the way it’s always been.
A new character enters the scene, or at least I think it’s a new character. Was he in the last scene? By the time I’ve worked it out, he’s gone.
I put the iron down, squinting at the TV. This doesn’t feel right. I feel anxiety rise in my chest. I think back to the many Sundays, lost under a pile of ironing, when I worked out ‘whodunnit’ before anyone else; when Sarah or Gemma would ask: ‘So how did you know?’
But this ... this is different. I can’t keep up. There are too many characters, the plot is moving too fast, it’s too confusing. I switch the television off.
It’s strange, but I’ve noticed that I can watch films that I’ve seen dozens of times before, the ones requiring little concentration, the ones with songs that break up the narrative, the ones where I know the characters as if they’re old friends. Not that I can remember what happens — it’s always a surprise at the end.
But I’ve discovered upsides to dementia, too.
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.
There are other benefits. I swap novels for short stories, delighting in the words on the page instead of the plot.
There are losses but there are also gains. A progressive illness can focus the mind in a very special way. I’Ve just bought a bright pink bike. It’s a perfect colour because I know I’ll never lose it, or forget which one is mine. Today is my first proper ride on it.
As I cover more ground, my confidence grows. everything’s going well until I prepare to turn right, and then something happens; a disconnect.
The next thing I know, I’m on the tarmac, gravel biting into my flesh. Something about my brain won’t turn right any more. No problem, I think, and work out a route to the shops where I only have to take left-hand turns. I’ve outwitted Alzheimer’s again. 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.
But I know that the key is to have calm thoughts.
One morning, I came downstairs and looked out at my back garden. My shed had gone. There was a blank where it once was, just a concrete base.
But then something cut through, more logically: a shed can’t disappear.
I could have panicked. I could have called the police. But instead I looked harder, wondering whether my mind was playing tricks on me.
I told myself I’d go back in 30 minutes. If the shed still wasn’t there, I’d know the illusion was real. And later, the shed was there — of course it was.
I tell myself: don’t panic, just wait. logic has to win the day. IT’S February 2015 and the Hollywood film Still Alice, starring Julianne Moore as a 50-year-old professor diagnosed with young-onset Alzheimer’s, is having its premiere in london.
I’m invited as part of my work with the Alzheimer’s Society.
Before the show, I get to meet Julianne Moore herself. ‘How do you live life?’ she asks me.
‘I live for the moment. I don’t plan any more. I just enjoy each day as it comes.’
later that evening, she’s interviewed on television.
‘Wendy is great,’ she says about me. ‘She used to plan a year in advance. She doesn’t now. She’s grateful for the present.
‘And, in a sense, that’s how we all need to live our lives, really holding on to what we have, because that’s the only thing we truly know about.’
There it is again, that sense of what Alzheimer’s can give, not just take away. I’Ve never been one for long goodbyes, which is ironic considering that I’m losing a little bit of me every day.
It’s my last day at work. My team know I wouldn’t want a fuss, so one of them hands over the cards and presents early in the morning, before anyone else arrives.
I stay in the office for only two hours. Anything more would be too painful. Then I leave with a clipped goodbye, just as I do every evening — only this time I’m not going to return.
each step takes me further away from the 20-year career that I’ve loved.
I don’t even try to remember this day. I don’t want to. I’m just not ready to say goodbye.