Somebody I Used to Know Read online

  I feel anxiety rise in my chest, swelling with the heat of the steam from the iron. I remember then many Sundays, lost under a pile of ironing while I worked out ‘whodunnit’ on the box before anyone else, weekends when Sarah or Gemma might say, ‘How did you know?’ when I got there before them. 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 with the remote control and stand staring at the black screen, a fuzzy outline of my own reflection staring back. This normally relaxing activity has suddenly lost its appeal. It’s like this all the time now. I’m unable to follow plots of programmes and films, forgetting all the little clues that are laid down along the way. I’ll be watching something when suddenly I can hear all these questions in my head: Who are they? Where did they come from? Have they been in it before? One question quickly followed by another, yet no one to ask. I realise then that the sighs of impatience are coming from me.

  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 and lighten the narrative, the ones where I know the characters as if they’re old friends, the places as if I’ve walked those streets myself. Not that I can remember what happens – it’s always a surprise at the end – but I feel a certain familiarity throughout, a sense of the ending, even if I don’t remember the details. It isn’t stressful to watch those films, and every time is a little like the first. Perhaps that’s a benefit of dementia. I’ve noticed that there are some upsides, like the series on television that I long not to end; for me it’s The Great British Bake Off. Who doesn’t enjoy that sense of escapism it offers, where little matters apart from the correct measurements for a perfect batter or springy sponge, where the worst sin is a soggy bottom? For me now, it never ends. Instead, 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 settle down in front of the TV with a cup of Yorkshire tea and get to know the contestants all over again.

  There was a time when a pile of novels always graced my bedside table, when the last thing I heard at night before I drifted off was the soft thud of 300 pages landing on my carpet. But the same book has been beside my bed for the last few months, the page folded at exactly the same place, the characters stuck in a storyline that hasn’t moved on. I’ve found myself reading and re-reading the same few pages, the plot never quite sticking in my head until I’ve given up altogether. It was hard giving up reading. I used to love getting lost in a good book. And yet, I knew there must be an alternative, that I didn’t have to let it go altogether. Does it have to be so black and white, or could there be a middle ground? And then it came to me: I would switch from novels to short stories. I’ve never read many before, but they are more manageable, the characters who live for just a few pages sticking more firmly in my head, the anxiety of trying to remember their back story gone from my chest. Reading is a pleasure again, now that I’ve thought of a way to adapt.

  When I find an alternative action or way of thinking, of working around this disease that has taken over my brain, it feels less like the world is closing in around me and more instead that new opportunities are opening up, that there are ways of living with dementia, that far from a full stop, the beginning of the end, it can be just a comma. I can swap novels for short stories, delighting in the words on the page instead of the plot itself. I’ve found myself rediscovering the delights of poems, of books that I used to read the girls when they were tiny. There are the losses, but there are also the gains, and for another fleeting moment I realise that a progressive illness can focus the mind in a very special way. That thought has been coming to me a lot lately.

  Another click on the research tab on the Join Dementia Research website, this time a clinical trial I’ve signed up for. I’d applied not thinking of adverse effects – after all, what could be worse than Alzheimer’s itself? So now there are two very friendly women sitting in my living room and Sarah is making tea for us all in the kitchen. They asked for her to be here – I wasn’t too sure why at the time – but when she sits down, the steam from the cups weaving in and out of our conversation, I understand why. They are here to explain more about the trial. It is nicknamed MADE: Minocycline in Alzheimer’s Disease.

  ‘This trial aims to determine whether minocycline is superior to a placebo in affecting the disease course over a two-year period in patients with very early Alzheimer’s disease,’ one of the ladies explains to Sarah. She nods, but I notice the look that passes between us. ‘Researchers will measure whether the drug is effective in reducing the rate of decline in cognitive and functional outcomes.’

  Sarah shifts in her seat and looks at me as the woman continues to explain to her how minocycline is traditionally used as a treatment for acne, but studies have shown that its anti-inflammatory effects could be effective in Alzheimer’s because it has the ability to cross the blood-brain barrier.

  ‘Now, let’s have a look at the paperwork,’ the second lady says, shuffling some papers in her lap. I notice that all the forms she has to complete are on behalf of the ‘carer’, and now I realise why Sarah is here. I sit up a little taller in my chair, wanting to be noticed, understanding that they have perhaps been unsure whether I am capable of making the decision to be part of the trial myself. Another example of how health professionals overlook the person sitting in front of them, dismissing them as a ‘sufferer’, writing them off with their diagnosis. But I am determined to be heard. And so I ask questions, lots of them, this brain that still works so well on good days set on proving to them why I’ve chosen to take part in this trial, to understand more about this disease, to empower myself. The more I talk, the more control I take back. I tell them Sarah is here as my daughter, not my carer, as I live alone. They look suitably embarrassed and they apologise. Then they look at me when they answer. I instantly like these ladies much more. They explain that on the two-year trial there are three options: the 400 mg dose, the 200 mg dose or the placebo.

  ‘I don’t want the placebo,’ I joke, knowing I don’t have a choice in the matter. This isn’t why I want to take part: I hope the trial shows the drugs work. I sign the forms, we come to an agreement that they’ll never refer to Sarah as my carer again, and then they leave.

  It is three weeks later and the drugs arrive along with Lisa, the research administrator. She unpacks the first three months of the trial tablets on my kitchen table. For some reason they are in giant packets and my hands look tiny as I pick them up and turn them over to read each side of the packet. Over the next few weeks I take them each day, obsessed at first with working out if my head feels any clearer, if my memory is sharper. It will be two years before I find out if I’ve been taking a placebo, but along with the tablet something else has been planted inside my belly, a little seed that will start to grow, a curiosity about research and learning more and more about this disease. That in itself starts to sprout a new feeling, a sense of purpose, of hope, of once again being valued, of taking back some of what dementia has stripped away from me.

  The bus is speeding along. Streets and cars and people whizzing by at the windows. And I can’t hear anything except the thudding of my heart in my chest. I try again.

  ‘Could you just stop here?’ I say.

  ‘No. The next stop is two miles away.’

  There it is again. The anxiety rising from deep inside.

  I’ve been using buses more and more since I got my bus pass, a benefit of Alzheimer’s, but sometimes I get easily confused by the numbers on the front. I think one is the number I want, then find myself travelling through streets going the opposite way from my destination. I get off, shake my head, wonder how I’d got so mixed up. Other buses don’t always stop at the same stop. So, like today, I’d pressed the bell when I’d realised that I’d got on the wrong bus.

  ‘But I need to get off,’ I say to the driver. There’s little
I can do to disguise the panic in my voice, and already my mind is trying to catch up, trying to think fast enough. Where is the bus heading? How far is two miles? Where will I need to get off? How will I get back? I’m standing in the aisle on the bus, my pleas for the driver to stop falling on deaf ears. I feel every bump in the road. I’m jostled around as my feet try to stay firm. And then I see a young man trying to catch my eye, a friendly smile. He stands up and walks towards me.

  ‘Are you OK?’ he asks.

  ‘I’m not sure,’ I say. ‘I missed my stop. I don’t know how to get back. I’ve got Alzheimer’s. I sometimes get the numbers on the bus mixed up.’

  ‘Don’t worry,’ he says. ‘I’ll show you where to get the bus back again.’

  He’s reassuring, calm. I trust him. I sit down and the tightness inside eases a little. But my mind is still spinning and I’m still trying to work it out myself: where I am, how to get back. When at last the bus pulls into a stop, the driver calls from his cabin: ‘You should take more notice next time!’

  I feel silly, confused – and sad too. I know that York is aiming to be a dementia-friendly city. Most bus drivers are wonderful; perhaps he was off work the day they handed out the dementia training. The young man shows me to the stop where I can get a bus back home. I thank him.

  ‘Hopefully next time I’ll get the right bus,’ I say.

  ‘Hopefully next time you’ll get the right driver,’ he replies, waving me off.

  ***

  I’m nervous walking into the lecture theatre – the room seems huge, the ceiling high. There are no windows, and just low lighting. There are dozens of voices bouncing off the walls, a sea of new faces. A fuzzy memory that the old me would have strolled in confidently. I feel Sarah at my side; her nursing studies lecturer is also here to support both of us today. This is my first dementia conference, part of York’s Women of the World (WOW) Festival, and also the first time meeting face to face with other women with dementia. I scan the room. There must be eighty people in here and only six of them have dementia. I try to work out which ones they are, studying their faces, their clothes, before realising how ridiculous that idea is. Do I look like I have dementia? Do any of us? It’s not a disease we have stamped on our foreheads; it is an invisible disability.

  One of the organisers steps forward and introduces herself. I instantly feel more relaxed as she leads us to our seats at the front. I ask Sarah if I can sit on the end of the row so I don’t feel trapped. There’s something else, though, aside from the unfamiliarity, that’s causing the tight ball deep inside my stomach – it’s the thought of sharing, of speaking out. I look at all the faces of strangers around me, the sheer size of the room, and wonder if I’m ready to open up to them about life with dementia, how much I’ll be expected to share. I’ve never been a talker, only a listener. The handful of best friends I’ve had over my lifetime could always sit and chat to me for hours about their problems, knowing I’d listen, that I’d never repeat a word, but they rarely heard mine in return. The thought of sharing with all these people is daunting.

  The lights go down and a range of experts take to the front of the stage. Most of what is discussed first goes over my head, so instead I focus on my surroundings and relax into my chair. It’s enough that I’m here – I don’t need to worry about keeping up. But then the next speaker is announced and my mind snaps back into focus. It’s Agnes Houston, who was diagnosed with young-onset dementia in 2006. I sit up straight as she speaks so eloquently about her experience. She was diagnosed ten years ago and is still so composed, so articulate that my heart swells with hope inside. By the time she leaves the stage, I’m clapping louder and more furiously than anyone else in the room; she has inspired me. Now I pay closer attention. The next person up is talking about getting rid of self-service tills in the supermarkets. I’m desperate to call out, to say I like them, that they give me time to go at my own pace, so I don’t feel rushed. But what is the etiquette here? I hesitate and then the moment is gone, the private me letting me down, too nervous to make my voice heard. I sigh, deflated, knowing Agnes would never allow herself to go unheard.

  An hour or so later, the six of us with dementia are invited into a room for a round-table discussion. It’s a much nicer room with windows and a view out over the university gardens and their perfectly green lawns. We introduce ourselves. There are women from all walks of life: doctors, academics, women just like me. All of their stories are so different, but my diagnosis is the newest. Some of them were diagnosed ten or even fifteen years ago, but here they are, sitting around the same table with me, chatting eloquently about their lives and what they find difficult. We laugh too, especially when we describe the same challenges, not needing to explain how it really feels, just knowing from a short description. We agree that if a thought pops into our heads we’re allowed to share it straight away rather than risk it vanishing – we all know what that feels like – and again there are peals of laughter. The more we speak, the more hope grows inside me, the thought that in ten or fifteen years there’s every chance I could still be like them. I am determined to share more, to see the nods that come back to me, to know that someone else feels the same.

  At one point we start talking about the government’s role in supporting provision, and another woman speaks up, talking about how Margaret Thatcher could do more to help. A couple of us glance at one another – David Cameron is prime minister, and has been for five years – but nobody corrects her. What difference does it make? We know what she means. Instead we continue the conversation, feeling at ease, more like we’re with family than other women we’ve only just met. There are the stories of loss and abandonment, of those who haven’t understood us, but mostly we laugh. Dementia isn’t winning in that room – we are. When we file out for lunch, I feel more empowered than I have done in months.

  You were never academic; sport was always your thing. At school you were captain of all the sports teams – tennis, hockey, netball – it felt like the only thing you were good at, so you were determined to be the best. You liked the challenge. Some things never change.

  You weren’t clever enough for university – or so you were told – instead you were advised to go to PE college. At first you loved it simply because you loved sports so much, but being away from home, you needed to swap family for friends, and something didn’t click. You didn’t enjoy the parties, you found it hard to mix, and it marked you out as different. Only a little, but that’s sometimes all it takes. There are always girls who will say horrible things about you, who will isolate you if you give them half the chance and, having never experienced this before, you couldn’t cope. You dropped out of college and people became your enemy for a long time. If you stayed alone, you wouldn’t get hurt; that’s what logic told you at the time. But then you were only young, still in your teens. Is it any wonder that you stopped opening up? That you became a private person, one who would never share, never talk about her feelings. Someone so different from me?

  A different room, a different discussion. It’s the afternoon of the WOW conference and this time there are only two of us with dementia around the table; the rest are healthcare professionals: university lecturers, researchers, care specialists. But I feel less confident now. Sarah sits beside me. She’s been part of the nursing ‘bank’, working shifts in different care homes, and making notes about the best and worst things about them. We’ve joked that she’s checking them all out for a time when I will need them, but sitting here around this table, that discussion feels very real. She shares with the group some of the things she’s observed. I’m proud to hear her speak out. I can see how much she cares and I know that’s partly because of me. But inside my stomach is a tight knot, increasing whenever anybody mentions poor care, lack of choices, even abuse in care homes. Is this really my future? I feel frightened, feeble and impotent. I sit listening, overwhelmed by dark feelings. How different it feels now from the discussion this morning with the other women who have dementia: h
ow strong and empowered we felt, despite the disease. Here, though, we are silent, an idea perpetuated around the table of us shuffling along towards the end of our lives, hopeless and helpless, on some kind of conveyor belt just ticking off the stops that society dictates we should have before we topple off the end altogether. And then the other lady with dementia speaks out.

  ‘Well, I’ve already booked my place at Dignitas,’ she says. ‘When I can’t take care of myself any more, I’m not going to put myself into the hands of a care home that can’t look after me properly, so when the time comes I’ll go to the euthanasia clinic in Switzerland and end my own life.’

  The rest of the room falls silent. I find myself nodding in agreement, but then glance at Sarah from the corner of my eye; her head is down. Guilt stings inside at the thought she caught me nodding, but I can’t deny that this has been the most empowering statement I’ve heard all day. With any progressive illness it’s the lack of control that’s the hardest thing to live with. For me, if I can find a way of living with dementia, shouldn’t I be allowed to find a way of dying with it too? It’s not a conversation I thought I’d be having in my head today. This morning the conversation between us six women focused on what we could do, but this afternoon it feels like decisions are taken out of our hands – unless we claim them back like the woman who insists she’s going to Dignitas. I admire her for already making that decision, particularly as I shuffle out of the room feeling so despondent, frustrated, detached and in despair about my own future.

  But in the days that have followed, the conversation about euthanasia has repeatedly returned to me. I’d never had to consider it seriously before and yet I’d immediately agreed with what that lady had said. I’d watched both of my parents die from cancer, and it was only natural, as I’d seen them suffer, that I’d wished I could end their pain. But with regards to me, that was something I’d never considered. I admired that woman’s conviction, her determination to end her life in Switzerland, her way. But I could never do that. I could never ask my girls to travel with me because just the thought of them travelling back alone is enough to break my heart. And so it’s the illegality of euthanasia that I find so frustrating, the fact that another decision has been taken out of my hands – this time by the laws of the land. It’s when I think like this, when I don’t feel like I have control, or rights, that I start feeling panicky inside. When all the what ifs or what about whens come rushing up from my gut and squeeze the words right out of my mouth; when the tears prick the back of my eyes; when I feel scared. What will happen to me when I go over the edge into that person I don’t know? Will I be blissfully unaware? Will I not even recognise the pain written across the two faces that mean the most to me – Sarah and Gemma? Euthanasia would save us all from that.