What it’s like to lose your mind
As an NHS boss, she was the woman who knew the answer to everything. Then Wendy began to feel something was wrong. Diagnosed with dementia at 58, her haunting diary reveals . . .
WENDY MITCHELL was a fit and healthy 56-year-old NHS manager when she began showing the first symptoms of dementia. A divorcee with two grown-up daughters, she was eventually diagnosed with early-onset Alzheimer’s. Today she is 61 and still managing to live independently at her home in Yorkshire. In a powerful and deeply affecting memoir, she gives the first-ever account of what it’s like to suffer this devastating disease by someone who is actually going through it.
September 2012
I am running along a path by the river with an impending sense of something I can’t put my finger on. It’s lingered for a few weeks now. more honestly, a few months.
How can I possibly describe it? Perhaps that’s why I haven’t been to the doctor’s; why I haven’t mentioned it to anyone else, not even my two grown-up daughters. my head just feels fuzzy. Life is a little less sharp.
It was this fuzziness that had pulled me from the sofa this afternoon. I wasn’t sure where I’d get the energy to run, but I knew I’d find it. I’d push through that initial wall, just as I had dozens of times before, and when I got home I’d feel invigorated. That’s what a run had always done.
I’d tackled the Three Peaks Challenge last year and I can still conjure up the feeling I had when I reached the top of Pen-y-ghent, the first peak; it felt like I’d conquered the world.
aside from my rubber soles hitting the path, the only other sound is a swish of oars breaking the stillness of the river.
But then, in a second, everything changes. Without warning, I’m falling.
There’s no time to put my hands out as the concrete comes crashing towards me. my face hits the ground. I feel a crack, something hot and sticky bursts from within. I reach up to my face and my hand returns to me covered in blood.
after being patched up in a&E, I go back to the path, searching for the wonky paving slab that’s left me with two black eyes, yet — thankfully — no broken bones.
The place where I fell is easily recognisable from the spatter of red where my face hit the pavement. I search all round, but there’s no dip, no loose slab, nothing to trip over.
So what was it, then? I go home, battered and bruised, and let lethargy cover me like a blanket.
a few days later, my tiredness drags me to my GP. ‘I just … I just feel slower than usual,’ I say, and he studies me for a second or two.
‘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.’
He sits back in his chair and folds his arms. ‘You work hard, Wendy. maybe take some time off.’
I’m actually in the middle of annual leave from my job as an NHS manager at St James’s Hospital in Leeds, and the idea of taking any more time off is preposterous to someone like me.
at work, I manage rosters for hundreds of nurses, keeping all that information stored in my head. my colleagues nickname me ‘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. They can’t possibly manage without me.
I’ve always been super-organised. as a single mum, I had to be.
I am the one who drives all over the country, who walks for miles on holiday, never frightened of getting lost. I’d brought up my daughters, Gemma and Sarah, alone, ever since their dad left when they were four and seven. It was hard, but there was always a way. That was my motto.
I was the one who never forgot anything. But this … this tiredness, just isn’t me. ‘age,’ shrugs my GP. months go by and the snowdrift that seems to have settled in my mind remains, along with the lack of energy and the same feeling I can’t put my finger on.
and then it happens again. I’m out running and I fall flat on the pavement — this time bruising nothing more than my ego.
There are another three falls in quick succession. my brain and my legs just aren’t talking to each other. Everything’s getting slower.
On bad days, my mind can’t instantly recall names and faces and places like it used to. This really just isn’t me. I am sitting in a hospital waiting room, with an overnight bag at my side purely as a precaution. The sensation of a head half-filled with cotton wool has continued for months, and this weekend it had been much worse.
When I got to work on monday, a colleague noticed how my words were slurred, and now I’m here.
my daughter Sarah, who’s training to be a nurse, comes with me to the hospital. They tell me that they are keeping me in for monitoring.
There’s an electronic roster on a screen that I can just make out from my bed. The nurses have no idea that I can read from it just how understaffed they are. I hate hospitals, and I know I make a terrible patient. But I don’t panic. I have a low resting heart rate. I’m fit and healthy. aren’t I?
The next few days are taken up with tests and scans. The word ‘stroke’ is mentioned, but nothing is confirmed.
I want to leave. I want to go home and put on my work clothes and return to my office, not be stuck here at the mercy of consultants too busy to give me more than five minutes of their time.
I close my eyes and long for visiting time, when normal conversations can resume, when I can hear what’s going on in the outside world, where routine means independence and a life fully lived.
It turns out there’s a hole in my heart. They think that may have been the cause of the stroke but they’re not sure. They make me an appointment with a neurologist and finally discharge me. RECOvERING at home, the next two months drag. Each day I wonder how much more daytime Tv I can take before I risk exposing myself to another stroke. I miss the team camaraderie that used to fill my day. I miss the buzz and the working to deadlines.
I used to wonder what it would be like to be retired, to do all those things I never had time for — and yet now I lack both the energy and the inclination.
But I notice something else, too. as the date of returning to work comes closer, I start to doubt myself in a way I never have before. What if I don’t know what I’m doing any more? What if I can’t remember the system?
March 2013
THREE months after the stroke I’m back at work. The days go by as they always did, and even though maybe I creak rather than leap into action, my confidence grows.
The things I do forget — names or numbers, places, people — well, that’s understandable. It’s because I’ve been off for months
at least that’s what everyone says, and I start to believe it. almost.
Two months later, I’m sitting in front of a consultant neurologist, trying to pinpoint the vagueness I’ve been feeling for months.
What sense would it make to her if I told her that the pile of yellow Post-it notes scattered on the carpet by my bed had got thicker and thicker, as I woke numerous times in the night 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. She hands me three words that I’ll need to remember and repeat to her at the end of our session. Sounds simple enough.
I do some memory tests. At the end of the session, Jo closes her notebook and folds her arms across her chest.
‘Now, can you tell me those three words that I asked you to remember?’ she asks. But I can’t. ‘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. Jo says she’ll see me again in 12 months. I AM sitting opposite my daughter Sarah while she reads a letter from Jo after our last meeting. I can tell just from watching her how far through the letter she is.
She’s currently reading the bit where Jo has detailed how independent I am, how well I manage at home, how organised I am.
But then she turns the page and 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. Sarah looks up and I catch her eye. ‘Dementia?’ she says. But that isn’t what it says. I know exactly what it says: ‘It is possible that this is a profile of
I’ve burned the words into my memory.
Sarah puts the letter down. ‘But it can’t be that,’ she says. ‘You’re so fit and healthy. ‘It doesn’t seem fair.’ ‘exactly,’ I say. ‘I’m sure it’s nothing like that, but I suppose they have to cover every eventuality.’
A few weeks later there is another letter — this time from the neurologist. Both of my girls are here to read it.
‘To be certain [of this representing an early dementia] we would need to demonstrate deteriorating cognition in six to 12 months’ time,’ writes the neurologist. ‘If no change, I would diagnose mild cognitive impairment.
‘However, if there is a definite deterioration then the diagnosis would be dementia.’
The three of us sit quietly, and I look across the living room at my two daughters, now grown women — though often still little girls in my eyes. That’s nothing to do with my memory or whatever it is that’s afflicting my brain; that’s the lens a mother always views her children through. No matter how old they get, or how tall they grow over us, the urge to protect them never dims. SIx months later, I’m in a meeting at work. Faces look at me expectantly as I prepare to explain the benefits of a new rostering system, despite the fact I haven’t fully comprehended them myself.
I glance around the table at the familiar faces, and yet I can’t recall their names. Seeds of worry whittle away inside as I shuffle my papers, 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 ends, people file from the room and then it comes to me. The word I was trying to remember was ‘and’.
April 2014
I lIe back in a dimly lit room, alone in my thoughts as the dye they use for a special scan makes its way around my brain.
The nurse tells me that I can sleep as I lie here, but I’m determined to stay awake and alert — as if somehow my brain can trick the system. Deep inside I know the dye will find the roadblock in my brain.
A few days later, I’m driving in my silver Suzuki and coming up to a junction. The car behind beeps and flashes me. I glance down at the dashboard and understand why: the speedometer is wavering somewhere around 10 mph.
How did that happen? Still the junction is approaching too quickly. I can’t think in time. Another beep. I cringe.
I turn left instead of right, away from my destination. The car behind me has gone, but my skin is tingling, panicked. My breath is short. I’m lost inside. I couldn’t process it quick enough.
My brain and my body weren’t talking, I think. I pull over and lean over the steering wheel. I close my eyes, take deep breaths. Why couldn’t I turn right?
The traffic zooms by, everyone else rushing here and there on automatic. Nothing has changed for them. But the metaphorical roadblock I’d been imagining just days before is real now.
‘You’ve been driving all your life, Wendy,’ I tell myself. But now I don’t feel safe.
I check my mirror, look over my shoulder, everything exaggerated, more like a learner than someone who’s been driving for 33 years. Slowly, I pull out onto the road, holding tight onto every nerve until I see my street approaching.
Somehow I get back home. I put my keys down in their usual place, in a dish on the hall table. And there they sit — useless, nonfunctional, idle. THe piece of paper Sarah has put on the table in front of us looks like it has a giant spider drawn on it. A giant spider with ‘Mum’ in the middle.
It’s a brainstorming diagram, with words in fat bubbles at the end of each spindly leg: living/ housing, anxiety, interests.
‘I think these are some of the things that we may need to think about if the diagnosis does turn out to be dementia …’ she says.
As her finger darts across the diagram, something tightens deep inside me. I tell Sarah I’m not ready for this yet. A flicker of hurt crosses her face, something only I would notice.
‘We don’t even know if there will be a dementia diagnosis,’ I say. ‘Some of the things you’ve written are way in the future …’ ‘But ...’ ‘ It’s too soon.’ I don’t mean to snap. I WAke and sit on the edge of my bed, looking down at my feet. Where once there was pale green