‘I thought I’d done something to offend you!’ she’d said.
And I laughed it off, blaming a busy day.
But I’m running out of excuses.
As another day draws to a close, I switch off my computer and gather up my things. I walk the two miles from the hospital to the bus station, and find my regular seat upstairs, the same one from which I watched the world wake this morning. Only on this journey home, I am exhausted. The bus ride takes just over an hour, as the landscape changes from city to countryside, the walls that hug York itself turning into hedges that wrap around fields. My heavy eyelids close, enjoying the nothingness that sleep brings. But I wake with a start, sitting up and looking around to get my bearings, terrified I might have missed my stop. Am I heading to the Scarborough coast? By the time I see my stop just in sight, making my wobbling descent down the stairs, I’m longing for the safety of home, the solitude, the peace, the non-taxing television and its mindless programmes. I’ve survived another day. And yet tomorrow the challenges I faced today might be even harder.
3
Six months later I’m sitting in front of Jo again as she tells me the three words she wants me to remember by the end of the session. She starts going through the same memory tests as she did six months ago. When she asks me to name objects beginning with a certain letter, nothing comes. I glance around the room for inspiration, my eyes flicking back to hers, noticing how she watches me, how she knows I’m cheating.
‘Take your time,’ she says gently.
Eventually I find a pen, a pad, a pencil.
‘OK,’ she says, writing them down.
It’s obvious to both of us that there has been a decline, and yet Jo’s gentle, confident manner distracts from the fear that’s gathering in the pit of my stomach. She leans across the desk and hands me a piece of paper and a pen.
‘Can you draw a clock for me?’ she says.
Easy, I think, and yet when I lean forward, the pen hovers above the paper; the circle isn’t quite what I remember a circle looking like. I start filling in the numbers, my brow furrowed in concentration, but it doesn’t look right – the twelve is in the wrong place. I sit back and stare at the page. Why is there no room for the twelve?
‘I’m sorry,’ I say. ‘It’s so strange. It’s just a clock.’
‘It’s OK,’ she says, making another scribble inside her notes. And then she asks for those three words she’d told me at the beginning of the session, and again, they’ve slipped away without me noticing.
‘We’ve got two more weeks to go, Wendy,’ she smiles, closing my file. ‘Plenty of time to try again.’
The third and final set of test days dawns and I’m back in front of Jo as we go through similar tests and this time, it’s just the same. At the end of our session, she sits back in her chair.
‘How do you think that went?’ she says.
‘I know it didn’t go well,’ I venture. I pause for a second, enough time to muster up the question I’ve wanted to ask for so many months. ‘What do you think it could be?’ I say 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 I’m not sure how the words reach my mouth because 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. And everything I’d been determined to avoid since I first saw whispers of the word in the letters that went between Jo and my neurologist.
Back at home, I sit down in front of my computer, open YouTube, and slowly type in the letters, my finger hovering over the return key before I search for ‘dementia’, daring myself perhaps, unsure if I’m ready to see the results. The videos that appear on screen are exactly the images that my mind has been conjuring up since Jo uttered the words; men and women at the ends of their lives, old and white-haired, blankness written large across every face, confined to hospital beds. Surely she must have got it wrong? None of these people are like me. My eyes skip through those videos, searching for something else, something more relatable and at the same time hoping that anything like me doesn’t appear, and that’s when I find Keith Oliver.
When the video starts, I’m relieved to see an intelligent man similar in age to me, sitting in a chair at home, his backdrop a beautiful green garden, speaking lucidly and eloquently into camera. As he starts to tell his story – how he was the headteacher of a busy Canterbury school, how two years before the recording he started to have unexpected falls, a feeling of fatigue, of just feeling ‘unwell’ – I am transfixed. I watch more in utter silence, mesmerised how, like me, he’d started to struggle at work with simple tasks like meeting deadlines, retrieving and recalling information, using the phone, multitasking. The more I watch, the more it makes sense, and yet the recognition is no longer frightening. Instead, a feeling of relief is creeping over me. He likens having dementia to the weather; some days are sunny, but on others the clouds gather. ‘When it’s a sunny day, I can hold a conversation with very little difficulty,’ he explains. ‘On a foggy day, finding those words is a real challenge.’
I think back to all the days at work when I’ve felt isolated in conversations, finding it impossible to retrieve the right words to join in or keep up. Keith has experienced exactly the same thing. His story was so positive: he talked about how he felt that his health had maintained a good level since his diagnosis thanks to his determination to live life to the full and focus on the things he enjoyed. By the time the eight-minute clip has come to an end, life really doesn’t seem as bleak. The ideas I had about what a person with dementia looks and sounds like have been challenged. Keith looks so normal, and I must look no different; he still does the things he enjoys, and so I could, too. It’s not so much mortality that hits me full on, but that sense of time – or, rather, lack of it. 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.
I go to sleep that night determined not to let the worry whittle away at me as I sleep, and yet I lie awake, blinking in the blackness, unable to push the dark thoughts that accompany that time of night from my mind. I’m fifty-eight years old and I face a diagnosis of dementia. Is it really that? Might the doctors be wrong? What are the chances? Over and over it goes until my brain wears itself out and sleep creeps up on me.
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 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 forever.
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. Before that it had been a long goodbye; this was more like ripping a plaster off – it was fast, whipped away in a second. I looked up from my desk and you were gone, although I didn’t know that then, because in that second, I had no memory of you. I had no memory of anything. It was like I had just arrived, had looked up and found myself in a place I’d never been to before, surrounded by strangers.
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. And so I started walking, out of the office door and the desk I left behind. The room with the grey metal filing cabinet, and strange trinkets on a desk that I’d never seen before in my life. 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 avoided the glare of the wall lights, 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. Office doors were open either side of the corridor, inside the rooms, heads I didn’t recognise looked down at paperwork. I dreaded them – whoever they were – looking up and being greeted by the blankness on my face, calling out to say hello and spotting the mystery I just knew would be there, etched across it. I didn’t want anyone to speak to me, to pull me into their world, because I didn’t know that world, I didn’t know the people in it. A blank existed between me and them. And it could have terrified me if I let it. Instead I carried on walking, letting each foot take one step in front of the other, to where I didn’t know. The tap of the floor underfoot breaking the silence around me, a slight antiseptic smell permeating my nose. There were double doors at the end of the corridor. I headed through them into a stairwell. Somewhere quieter, no people. There was another door with a faded, patterned-glass panel, and something told me it would offer sanctuary. The pale pink walls that greeted me were instantly calming. The emptiness of it, the isolation, the silence. I went into a cubicle, sat down on the closed toilet seat. And waited.
It felt like I was in there for hours, but there is no concept of time in moments like that. My brain was cloudy, a fog had descended, like the peak of Scafell Pike 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. Not on that day in particular. 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.
Today’s date is 31 July 2014. It has been embedded in my mind for weeks now for two reasons; firstly, it is the day that Sarah has planned to move out of my home and into the new home she will share with her boyfriend. Secondly, it is the date I’m due to receive my diagnosis from the neurologist.
Sarah, Gemma and I haven’t discussed the impending news in the last few days; it is an unspoken thing, a diagnosis we are all sure of, the deterioration predicted in earlier letters now clear for us all to see without the need for a medical eye. What is there left to discuss?
And so I am here at the hospital alone, sitting in the cramped office of the neurologist as she shuffles through the paperwork between us. As she starts to speak, I know that it isn’t so much what she’s saying that will stick firm in my mind, but the way she is looking at me, the pity so apparent in her eyes. She doesn’t actually say much at all, and from the moment I was called into her tiny office she hasn’t needed to, because I’d seen it for myself when I’d glanced down at the paperwork in front of her, before she picked it up: Alzheimer’s. She’s pointing at it now, along with another word – dementia – her pen is flipping between the two, she is telling me that this is the letter she will be sending to my GP. All I can wonder in this moment is why she’s pointing out these two words to me. Is it to make it that bit clearer, to make sure I believe her? Is it because there’s nothing on my face to signal that I’m taking it in? Only my eyes move as I stare at the paper in front of me. I am calm. There’s nothing left to question; the answer is in front of me in black and white. Despite the video of Keith Oliver and all the positive things he said about dementia, nothing prepares you for a diagnosis of your own, for that feeling of emptiness, because I know these words, this letter, will change everything, they’ll change the life I know. They’ll steal the life I know. I’m fifty-eight years old, and I’ve just been diagnosed with young-onset Alzheimer’s.
Or perhaps she is showing me those two words because she can see the blank gaze, because as she talks I’m picturing another letter in my mind. One I held in my hand a few weeks ago from the pension company, stating that I was due to retire at sixty-six. That leaves an eight-year deficit. How will I fill it? That’s what’s going through my mind: what will happen to me in the next eight years? How will life look? I see today’s date at the top of her paperwork, and I think of Sarah about to embark on a new beginning, when this letter for me represents an ending. There is some relief there, an end to one type of uncertainty, a beginning of another.
‘Good luck,’ she says as I leave her office. I won’t see her again, because there is no follow-up after diagnosis. There’s nothing they can do.
I start the short walk home, watching others going about their daily routines, noting how life goes on around me, and yet at this moment, mine has come to a standstill. I know Sarah will be back at the house, packing the last of her boxes, pulling the last few clothes from hangers in her wardrobe. She will offer to stay with me, of course she will, but that’s not what I want or need. She’d stayed with me during her nursing training – it had made better financial sense while she was a student – but it’s not necessary now, she must become independent again, and today’s diagnosis changes nothing. I close my eyes briefly and an image flashes into my head, as if the future has been fast-forwarded in my mind; I am in a bed, my hair grey, my daughter caring for me. I shake it away, along with a dozen other questions and images. I don’t want my girls to become my carers. Why would I rid them of the title ‘child’ and label them with something else they don’t want and didn’t ask for? How could I allow their dreams to be put on hold to care for me?
I fish a pen from my bag and write on the back of the letter that the neurologist handed me: From where I am now, what’s the average time to deteriorate – what are the stages and things to look out for?
I walk on automatically, questions coming too quickly to catch. Instead I quickly shut each one away in my mind behind a door and turn the key, afraid to let them run wild and out of control. I arrive home and let myself in, the neurologist’s words still settling in my brain, not separated by enough space or time to cushion the blow to my girls, my breezy mum voice lost under the weight of worry. Sarah greets me in the hall, we exchange a glance before I say anything, and I see that instant where her shoulders drop just a millimetre.
‘It was what we expected,’ I say, my voice sounding detached and unfamiliar. The silence settles for a moment between us, and then I call Gemma and tell her the same.
We’re here again at the hospital four week
s later. The girls had arrived at my place early to give us plenty of time to walk to the hospital, alleviating the stress of having to find a parking space. We’d walked together in silence, Sarah and Gemma holding tight on to their thoughts, most of them captured in notes written between them that I’d spotted sticking out of their handbags. I lead the way into the hospital, finding my way to the same row of hard green plastic seats I’d sat in myself a few weeks before. We sit in the waiting area together, one of the girls on each side of me, and I’m not sure who is protecting whom. Each time I hear footsteps, I glance up, until at last I see the familiar face of the neurologist.
I guide the girls into the room and make the introductions; there’s the same desk where I sat just weeks before, the same bundle of paperwork, the same pitiful smile stuck fast to the consultant’s face – all she can offer me. We’d agreed that I would leave them in the room alone as this meeting is to help them understand. I wanted them to be able to ask whatever questions they needed to without worrying how I might react, and so I leave and head back to the waiting area. As I sit there, I remind myself that they have each other in that room, and I know that if one of them stumbles on a question, the other will finish the sentence. I even picture the glances that will pass between them, lost on the neurologist perhaps, but they would have been so visible to me.
Outside there is a box of toys that seem long since abandoned. An abacus sits on top, painted in primary colours that have faded and dulled as the life has worn out of it. I picture Gemma and Sarah as children, their tiny fingers swishing the beads this way and that, counting and giggling at the rattling sound they made. I glance back at the door and wonder if they are OK on the other side of it.
Somebody I Used to Know Page 4
