Somebody I Used to Know Read online

  ‘Can someone open a window at the back?’ I ask, raising my voice above their gentle mutters. And then I begin. ‘You may have noticed the “Dementia Awareness” icon criss-crossing your screen over the last few days …’

  A few heads go down, there are some awkward shuffles. Some hadn’t noticed at all. That’s OK.

  ‘Well, today I thought I’d take you through a Dementia Friends session.’

  On the table in front of them are bingo cards. They have different words written on them: Alzheimer’s, progressive, living well, short-term memory. I’ve deliberately started with a fun game, me reading out sentences with key words missing, them ticking off the ones on their card they think are relevant. As we get going, the mood lightens, someone calls out ‘Bingo’ when they get a line, and I hand out a chocolate. There are smiles, laughter even; this is just how I wanted it to be. We carry on to see who can complete the whole card first.

  ‘Dementia is not a natural part of …’ I say, leaving them to fill in the rest of the sentence.

  ‘Bingo!’ they all shout in unison, and we all laugh then. I hand out the last of the chocolates and pick up the notes in front of me, noticing as I do my hands are shaking ever so slightly. I start to read.

  ‘You might like to think of the memory of someone with dementia as a bit like a bookcase as tall as I am. A cheap, mass-produced, flat-pack bookcase. This bookcase is full of books that contain factual memories. The top shelf – the ones you have to stand on your tiptoes to reach – hold very recent memories, such as what you had for breakfast this morning. By your shoulders are books from perhaps your fifties, the ones that all of us are used to reaching out and taking from the shelf any time we like – no effort, hardly any strain. And by your knees are books from your twenties. And then you get all the way down to your feet, where just beyond the tips of your toes you’ll find books from your childhood. Having dementia rocks your bookcase from side to side, and it’s always the books at the top that fall first, jumbling everything else up, so sometimes what you think of as your most recent memories will come from further down the bookcase, earlier in your life. Perhaps that’s why sometimes you can so clearly visualise looking through the bars of your cot, and yet you can’t remember what you had for breakfast.’

  I pause and look up from my notes. All eyes are trained on me; my staff are holding their breath, waiting for me to finish.

  ‘There is another part of the brain, another bookcase, separate from the first, more flimsy one. This bookcase is sturdy; it is your emotional bookcase. When dementia attempts to rock this one side to side, as if the two versions of you – before and after – are two tectonic plates that collide beneath the solid ground, this bookcase is stronger, more resilient, so the contents will be safer for longer. Even though you may forget that your friends or family visited recently – because that book comes off your factual bookcase – what stays with you are the feelings you had of love, happiness and comfort when they were near. You may forget what you did, what you spoke about or that they even popped by, but you know you feel safe and happy when you see them. So even if they don’t appear to remember, don’t ever stop visiting those with dementia …’

  I stop then, swallowing hard. I look up at the room; eight pairs of eyes stare back.

  ‘The reason why I’m telling you all this is because I’ve just been diagnosed with Alzheimer’s myself.’ I pause then, giving it time to sink in. ‘But I know you can help me.’

  I see many visibly relax in their chairs as I say that, a call to arms. They know as much as I do that I’d never want to be seen as a victim. But there is silence as I stare back at them from the front. Some people have their heads down, and from others I see that sympathetic stare, their heads cocked gently to the side. They don’t know how to react. I get that; I didn’t either.

  I smile my biggest smile. ‘I can see I’ve shocked you all into silence,’ I say. ‘Well, that’s a first.’

  I ask the first group not to mention my diagnosis, and then the second group filter into the room and I repeat the same session, concluding with the bit where I tell them about my own diagnosis. Again the reactions are mixed, most filing out of the room in silence. One of the other team leaders lingers after they’ve gone, then gives me a hug.

  ‘That was very moving, Wendy,’ he says. ‘Are you OK?’

  I nod. But it doesn’t feel like it’s about me right now.

  I go back to my desk and email all my staff, letting them know that I’m here to answer any questions they might have, and then I leave for home, knowing that they will digest the news better when I’m gone, when they can talk about it between them openly, letting it sink in. But I have confidence in them, much more than I had in management. I know they’ll come good.

  I am not disappointed. Over the next few days the inventiveness of my staff lifts my spirits. They come up with a plan for each of them to have a different-coloured Post-it note assigned to them, so if they write a note on my desk I’ll know instantly who it’s from. As further clarification, they post their names on each colour and stick them to the whiteboard above my desk. Another person recognised that it might be confusing to keep calling me at different times on the days I work at home, so between them they work out a timetable that they’ll only bother me with questions at a certain time of the day. They look to me to advise on when that time would be. And there are little things: instead of walking into my office as they usually would, I begin to notice they stop asking for immediate answers when they come in to ask something of me. Instead they just leave the question with me. ‘Whenever you’ve got a minute …’ they say, removing any pressure on my brain to come up with something quickly. We even laugh about my dementia, a joke always making it seem less of a disaster. A few days later I wander into someone’s office to ask if she’s completed a task I’ve been waiting for.

  ‘Er, I don’t think you’ve asked me to do that,’ comes the sheepish response. The others start giggling.

  ‘As if Wendy would forget to ask you that!’ someone says, letting me off the hook.

  ‘Nice try,’ I laugh. We all laugh.

  The light is there, it’s not all dark. I still know my time here is limited, but they make it easier to stay for a while longer.

  5

  I see the postman coming towards my house. The spring in his step has been swapped for a shuffle as the week has gone on. I watch as he heaves a pile of post from the red bag on his trolley and looks towards my house. I’m at the front door before he’s pressed the bell. He holds out the bundle, thick with heavy books.

  ‘For you again,’ he sighs.

  The smile of a few days ago when he’d handed me the first heavy bundle is long gone, replaced no doubt with backache. Since I found the page on the Alzheimer’s Society website offering to send out free leaflets and books about a whole range of subjects on dementia, more and more have been arriving for me each day. I’d gone through the whole checklist, ticking every box in my desire for information – any information – that might tell me more. I rip open each envelope when he’s gone, flicking through the titles: Keeping Safe At Home, Talking To Your Children About Your Illness, Planning Ahead. I put them in a pile on my coffee table; right now it’s enough to have them nearby. A comfort blanket for darker days.

  In the last few days I’ve started a blog called Which Me Am I Today? It’s somewhere I can put all this new information I’m discovering and, most importantly, it serves as my memory when I know that each night my brain is deleting files as I sleep – the day before becoming as much of a mystery as the day ahead.

  I still feel abandoned by the doctors who diagnosed me, so instead I scan the internet, my desire to learn more and more, to equip myself with something other than fear, pushing me on to click on more pages, to absorb everything I possibly can. The only thing, of course, is holding on to all that new information. I glance at the books on the coffee table.

  It’s been the same with every headline about dementia since I was
diagnosed. I’d read one after another, my heart lifting at the thought of the miracle cure that most newspapers suggested might be on the horizon. I started taking vitamin E because it was claimed it could slow the progress of the disease. I stockpiled my cupboards, popping a pill into the daily box with all the others. But when one day I started to run out, I scoured the internet for more evidence, switching from tabloid newspaper headlines to research papers, and discovered there was little to prove it had any real effect. I threw the last empty bottle into the bin and didn’t replace it.

  Most newspapers will tell their readers that a healthy lifestyle helps prevent Alzheimer’s, and I think of my old running shoes at the back of the wardrobe and remind myself not to believe everything I read. Now each headline fills me with a niggling disappointment instead of the hope it once did. I still want a cure, desperately. There’s nothing wrong in hoping, but expecting – that just feels like pre-planned disappointment. Is it not better to live for today, just keeping in mind tomorrow? But then I think of my daughters: what if they were ever diagnosed with it?

  There has to be something more that I can do. My eyes fall on another leaflet I’ve collected on my travels, What To Do When A Potential Brain Donor Dies. I shift in my chair; that’s not what I mean. 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. I send an email, telling whoever will be reading it that I want to be involved as much as possible, while I still have the opportunity, feeling, as I type, the continuing sense of urgency that has settled itself inside me.

  A few days later I open an email explaining that the Alzheimer’s Society is putting together a national Join Dementia Research database, and they want to know whether I’d like to help raise awareness in Yorkshire. I know from my own findings that dementia research lags far behind that into cancer or heart disease, and the way of discovering more is to appeal for volunteers for studies, not just those with the disease, but their families, caregivers, and even people who simply want to help. I think of Gemma and Sarah again, and the hope of finding a cure in their lifetime, so I write back, explaining I’m happy to do anything.

  The following week I’m on a train to London to receive media training. The idea is that with some training I’ll know what to expect when journalists interview me and how to answer them, either in print, or on TV or radio. The world whizzes by at the windows and I feel thankful for the miles that pass between me and home, for the opportunity to be out in the world doing something, making a contribution instead of sitting idle and allowing this disease to spread not only through my own brain, but those of others. I think of all the people who have so tragically lost limbs or have had heart attacks and the technology that has been developed through research to help them, but what is there for dementia? We need those same brilliant brains to develop tools to help us with our memory, speech and cognitive problems so we can lead better lives. So we can live with Alzheimer’s. I vow to say yes to anything I’m asked to do to help this cause.

  That’s how I find myself back on another train to London a few weeks later, a printed map of how to get to my destination in St Katharine’s Dock and walking instructions from the Tube in my rucksack. I arrive early, as always, and sit quietly on a bench beside the River Thames. People and traffic rush by, seagulls flap their wings to keep up with passing tugboats, but I find peace in the stillness of the moment, an opportunity to be quiet inside and simply watch the world around me. Most of us spend idle moments pulling a phone from our pockets to fill the time, the art of observation waning every day. How strange that Alzheimer’s has reminded me of the calmness to be found in a little time out when, simultaneously, I feel in a rush to make the most of every moment before it deserts me. Yet turning the sound down on the world, even for just a few minutes, can calm the racing mind and thoughts of the road ahead.

  Today I’m going to the Alzheimer’s Society headquarters to hear more about joining the Research Network. Normally you have to be a member of the network for six months before you can join, but I had written to the network research manager a few weeks before telling him I couldn’t wait that long to be of assistance. If I wait six months, I might not be capable, I’d told him. That feeling of urgency striking again, of wondering just what my shelf life would be, my ‘use by’ date indeterminable. I know my time at work is coming to an end, so maybe voluntary work like this will fill the space. Thankfully the Research Network people agreed to forego the six-month rule.

  The Research Network matches ‘monitors’ with researchers who are carrying out new studies or drug trials into the disease. As a monitor, results are fed back to you so you can assess that the funding is being spent and allocated correctly. More importantly, it gives you the opportunity to hear about the trials from the researchers at regular intervals. It must be a lonely job being a researcher sometimes, so having the chance to listen to them is an exciting prospect. Being a monitor sounds perfect for me, a way for my diseased brain to still feel useful, and to be one of the first to hear about new areas of research.

  At the head office, I’m shown into a room where for a second the noisy chatter distracts and unnerves me. I get a cup of tea and sit at the edge of the room so I can watch for a while, taking it all in, distinguishing voices and conversations. People soon come over to say hello, no one knowing I have dementia of course – to them I could be anyone, a researcher or carer – and I’m grateful for a moment that this disease doesn’t show on the outside. When the meeting starts, everyone sits down, and we go around the table introducing ourselves.

  ‘I’m living with dementia and I’m here today because I want to learn more about research,’ I tell the room. I notice the eyes that hold my gaze for a moment longer, the pause before the next person speaks, the curiosity; perhaps they, just like me, forget that Alzheimer’s isn’t something you can see.

  Everyone takes their turn. One man who cares for his mum introduces himself, telling the room his mum ‘really has dementia’. He catches my eye and it feels as if somehow he’s saying that my case isn’t real.

  ‘Well, dementia has to start somewhere,’ I tell him. ‘There is a beginning as well as a middle and an end, and I’m someone at the beginning.’

  He looks back at me, surprised, as if he’s never thought of that before, which seems strange to me until I remind myself that only 5 per cent of people diagnosed with dementia have young-onset Alzheimer’s, so he wouldn’t be expecting to see me sitting at the table alongside him. I remind myself of the first image that I’d held in my mind about someone with Alzheimer’s and suddenly his reaction makes perfect sense.

  Do you remember that last cigarette? When you finally realised it was now or never? It might surprise you to know that I do. How strange the choice the mind makes, the memories it holds fast. That it can still see so clearly that last blue smoke curling up from your face, and yet it can’t tell me who came to visit yesterday. You must remember peeling back the cellophane, feeling the tiny resistance as you pushed up the lid, removed the foil paper, took the perfect white stick from the packet, the others collapsing into the space it left behind.

  You’d started smoking back in college, bizarrely to try and convince someone else to stop. But your addictive personality had clung to you, hanging around year after year. You grew apart slowly, found you had less and less in common; for you it was that tiny individual, the guilt you felt smoking with a baby in the house, and then the tightening in your chest that meant it was harder and harder to get your breath back when running around after a toddler. The next baby was just a seed of a thought, yet surely you were strong enough to kick the habit before another tiny being entered your world. You’d tried before to say goodbye, stepping away slowly to ease the pain, but that last time, it was going to be different. A swifter departure than you’d tried before. You lit the last cigarette, dragged on it an
d saw the end burn bright orange; you inhaled deeply, and then released a great plume of smoke into the air. And that was it. The end. You stubbed it out and threw the last nineteen away with it.

  The smell clung to you long after they hit the bottom of the bin, and that bitter taste at the back of your throat, you’d never noticed before, not until you’d fallen out of love with its seductive effects. Within days your food tasted nicer, within weeks the tightness in your chest had gone. You bought new trainers and a new gym kit, and exercise became your new addiction, feeling positive replaced your need for nicotine. Years later, running became your new obsession as you enjoyed the feeling of completing a 10 km race, the friendly faces that lined the street to cheer you on better company than the smoke that had once filled your lungs. But, curiously, you never forgot that last cigarette just like the addiction, the memory has clung on tight inside me too. It’s hard to fathom now when there are so many ‘lasts’ you’d rather exchange for that. If only we could pick and choose the files that get deleted, if we could swap a last cigarette for something else: the last run, the last cake baked, the last drive in your beloved silver Suzuki. But you didn’t know then they would be lasts, dementia gave you no warnings. Not like the last cigarette, the one that marked the change to a healthier lifestyle, a change that should see you fit and well long into your retirement. But that was a decision you made for yourself. No one else made it for you.

  It is Sunday afternoon and I’m ironing at home in front of the TV. There’s an Agatha Christie murder mystery just about to start, an old black-and-white one, I can’t remember the title, but I know instinctively it’s one that’s a favourite. 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. Were they in the last scene? By the time I’ve worked it out, they’re gone. I put the iron down, squinting at the TV, my brow furrowed above my glasses. Who is this new character? Have I seen them before? This doesn’t feel right.