Everything goes to plan, except as we’re nearing Birmingham, I hear music coming from somewhere and begin to jig away to the tune, as it sounds familiar, and then I realise it’s coming from me – the alarm I set to remind me to get off with my suitcase.
I’ve arrived. I feel that little bubble of pride, but then I remember: Birmingham New Street, my least favourite station, with all those exits, all those people. I wander around for a while, trying to keep my fears firmly in their box. Many trains have been cancelled and journeys disrupted, so impatient people mill around, fraught workers hassled from all directions, and in the midst of this, I need to work out how to get out of the station. I pull my suitcase over to the wall, feel the coolness of the brick sink into my back as I wait for the chaos to die down. As more trains pull out of the station, I wait for my thoughts to pull in. After a while, I spot a smiley face, I ask: ‘Which way out is best?’ They show me.
I’m in the street now. It’s busier than the station and the surroundings are unfamiliar. I pull the picture file from my rucksack and flick through the printouts, but I can’t find anything recognisable. The panic could start nibbling harder then, taking bigger chunks, feeding on pieces of logical thinking. I pull out my iPad and take pictures, experiencing a settling feeling inside, a distraction from the fear, a few moments of clear, calm thinking reminding me what to do.
I spot a friendly-looking café, a neat red canopy and gingham tablecloths. I head towards it and go inside, ordering a cup of tea. I stare into the beige drink, swirling the milk around with my spoon, the warm scent curling towards me, and then I open the walking app on my iPhone, so I can find my way to my hotel. It’s only meant to be five minutes’ walk from the station, I remind myself. I look up and ask another customer in the café if they’ve heard of it. They return my question with a blank stare, an apologetic shake of the head. The app takes a while to load, and even by the time I’ve finished my tea, it’s not working. I ask the staff at the counter. They don’t know but hazard a guess, trying to help. I decide to head outside when my app slowly churns into action. It says to turn left, to head towards St Martin’s Church, and then it freezes. I see a community policeman, who glances at my Dementia Friends badge as I talk. He knows the hotel, but the app is taking me the wrong way, he says.
‘It’s not far,’ he assures me. ‘A ten-minute walk along this road, no turns one way or the other.’
I continue on my way, searching all the while for the building that I’d printed out weeks before, and then suddenly, I spot a sign above the rooftops, the name of the hotel in large letters. My shoulders relax as I head towards it, the smiling faces warm and welcoming as I enter the reception.
I find my room and pull my milk and teabags from my case – there are never enough in hotel rooms. Having a cup of tea, I’m already thinking of the morning, wondering how I’ll find my way back from the hotel to the station. It’s no good; I’ll have to wander back right now so I’ll be sure I’ll know the way. A few moments later I’m back in reception, taking my phone from my rucksack to make notes as I walk back the way I came. Suddenly a siren startles me as a police car whizzes past, so I pull my pink earplugs from my bag and pop them in. The world dulls around me and I feel calmer now, more able to concentrate. I snap pictures as I go, feeling more settled, as if I know this street now, the shops and offices, colourful doors and windows.
I look up at the sky and the light is beginning to fade. I always like to be back in my hotel room before it gets dark, before my eyes lose their sense of perspective, and everything closes in, black and unfamiliar again. In a shop I buy a sandwich and a drink, and then I head back to the safety of my room, looking down at the rush-hour traffic as I sip another cup of tea at the window.
I can’t work out how to switch the lights on, so I make do with a bedside lamp. Managing to get the telly on, I leave one curtain open in case I wake in the night and write myself the name of where I am and what I’m doing here on a Post-it note. Just in case.
I wake/sleep all night, my brain scrappy and unsure in the morning. As I pull my iPad from my bag and check to see if Sarah has made a move in Scrabble, slowly the world clears. Now to figure out how to use the shower in this room. When I turn up for the conference in a couple of hours, appearing fresh and familiar with the place, nobody will know just what it’s taken to get me there. I pride myself on that.
Why do I put myself through it? What’s the alternative? Not to go anywhere and sit at home deteriorating quickly? I don’t think so. That wouldn’t be me. Dementia or not.
What makes it all worthwhile – the hassle, the preparation, the travelling, the confusion and fatigue – are the people with dementia who come up to me after a speech or write after reading my blog and say: ‘I’m no longer afraid.’ Or the daughters who tell me: ‘Now I know how I can help my mum better.’ One lady wrote to me recently: When I drive through heavy fog or snow, it’s always easier and less frightening when I am following the tail lights of another car in front of me. Thank you, Wendy, for keeping your tail lights on.
I do it for me, too. Being listened to by professionals helps me feel that I’m making a difference, but not being listened to can feel upsetting, especially when I see that things can’t be changed or put into practice because of red tape. I say that speaking at events and meetings is my sudoku, but who doesn’t get fed up of playing the same game? Sometimes I feel so overwhelmingly tired that I just want to forget about dementia. When those times come, I do try to give myself a week off, but not too long, because otherwise I’ll forget to do all the things that are so hard, and then they’ll become harder. That is the thought that clings on through the storm. Fear is our biggest motivator.
I’ve been writing my blog for two years now. Two years of sharing thoughts, of backing up things to memory. Before dementia, I’d never even read a blog, let alone written one, and yet it’s never too late to learn something new, not even for someone with a brain disease. A few months ago, at one of the Minds and Voices sessions, I was taking photos of everyone on my iPad when Rita, another lady with dementia, nudged me.
‘Have you really just taken a photo using that?’ she said.
‘Yes,’ I replied, showing her the picture of her smiling face.
‘Well I never!’ she said. ‘I’m sure my grandchildren have one of these; I’ll ask them to show me our photos.’
I told her a little more. ‘There’s this thing called FaceTime and you can talk and see people at the same time’.
‘No!’ she said. ‘How can that be?’
We turned back to the session, but I could see her glancing over her shoulder curiously at the red tablet I held in my hands.
A month later, she was back, full of smiles and making a beeline for me.
‘My granddaughter showed me how to look at all our photos, and we did that FaceTime thing and she appeared right in front of me, talking.’
Rita was so proud of herself for learning how to use something new. I know myself how cut off I feel sometimes, not being able to pick up the phone and hear a friendly voice at the other end, but being able to see and speak to my girls makes me feel less excluded.
Twitter was another thing that opened up a whole new world. Colleagues in my old offices used to joke that although I worked in an IT environment, I was clueless about technology, so it’s ironic that now I couldn’t get through the day without it. At first I saw Twitter as a challenge for my brain, trying to work out how to say what I wanted within 140 characters. I spent forever practising but never having the courage to click on that little blue tweet button; sending my words out into the world seemed a terrifying prospect. Then one evening I was sitting at home with the quietness of the room, the darkness tapping on the window outside and emptiness as my companions. I felt lonely, and then remembered Twitter. I opened up the app and there conversations between people all over the world flitted backwards and forwards in front of me.
I scrolled through endless conversations as an observer,
until I came across a hashtag that made me curious: #whywedoresearch. I clicked on it and found a whole range of medical professionals, including nurses and researchers, all talking about setting up a new initiative and wanting to find patients who would be willing to promote research on Twitter. Their conversation continued as I tentatively typed out my first tweet: Could I be your first patient ambassador? I typed, adding a smiley face for good measure. A second later a reply came: they’d be delighted!
Slowly I joined in more, and was quickly welcomed and accepted. In that one evening I found new friends, people I’ve met since in real life. I even went to the Houses of Parliament with one to promote research.
Now, whenever I’m feeling the pinch of loneliness, I open Twitter and talk to my virtual friends all around the world. Twitter brings the outside world back in.
15
I open my front door and try to greet the lady standing on the other side of it with a joke.
‘If you’ve come for my brain now, you’re going to have to wait,’ I say. ‘Because I’m not quite finished with it!’
She laughs as she comes in, and I greet her as I always do, offering a cup of tea, taking her coat and hanging it by the stairs. But there’s something lurking beneath my smile, a need to make light of things, to avoid – even for a moment – the gravity of the real reason she’s here, because we’re talking about what will happen to my brain after I die, as I have decided to leave it to medical research.
There is a strange limbo between life and death when you’re living with a progressive illness, that balance of knowing that things need to be dealt with, an acknowledgement of the future, and yet this great urge to live in the moment, to think about the now and forget this is even happening. But the nature of dementia means I can’t forget: this disease follows me everywhere, bleeds into every moment. As much as I try to adapt to the person that it has made me, there is not a day that goes past when I don’t wish it would desert me as fast as it arrived. I want to have conversations that don’t even include its name, to be anonymous in the world again.
We sit down in my conservatory, going over the same memory tests we do each time, the woman making notes in a file that will be pored over after my death. I try to shake that thought away, to remind myself why I have agreed to donate my brain to research, to remember how wonderful it would be if, after I’m gone, my brain gives up the smallest secret about this disease, or confirms some scientific thinking. It’s a funny feeling, but a comforting one.
She leaves after an hour and I’m alone again in my thoughts. I feel sad and I’m not sure why. We spent the last hour discussing the end, something that I can’t face talking about with the two people I love the most, Gemma and Sarah. It makes sense as a mother, of course it does, but these are important conversations to have, and there are others to add to the list, but sometimes I wonder: haven’t we already been brave enough?
I know I didn’t perform as well in those memory tests as I had before – I looked over her shoulder as she wrote down the results – and felt my heart sink a little further into my slippers. I’m sure that I wasn’t as articulate as when she first visited two years ago either, because the spoken word is leaving me. The words are often too hard to find, take too long to come out, and I give up on sentences halfway through, because the point I’ve been trying to make has deserted me before I’ve finished forming it. I pick up my phone and look through my WhatsApp conversations, the text that whips back and forth between friends, accompanied by witty emojis that make me and them laugh. But that’s the written word. I can’t have those same spoken conversations now, and with that thought something flits through my mind: Can I go on?
I brush it away quickly; I don’t want to think that. I want to turn back to the now, and not have to go down that road, but the now is changing every day. I’m a different me today from the one I was six months ago. A different one then from the one I was a year ago. I’m losing my sense of self, and that is more frightening than anything, because that’s all I have – that’s all any of us have. The one we call ‘me’. Can I rely on this new me, the one with such fuzzy memories of what came before? What about the one who comes six months or a year from now? Will she be able to articulate that she can manage? That she wants to go on?
I reread a blog post recently mentioning a woman at the WOW conference who said she had already booked her place at Dignitas, the euthanasia clinic in Switzerland. I admired her decisiveness and her bravery then, but I know I can’t do that – because of my girls. I’m not ready, either, of course I’m not. But will the me that I will be a year from now know if I’m ready? Can I rely on her to articulate my wishes? I saw a video of me speaking recently, and I didn’t recognise the woman who stared back from the screen. I don’t know that voice or the way she speaks, so the me I knew for fifty-eight years has already departed. I keep her alive where I can – in a funny blog post, or a WhatsApp message, an email or a quip written into one of my speeches. Is that the real me trapped inside – or is it the one who speaks on the outside? Is one of them a fraud?
I spend my life now reminding people with dementia – or those who care for them – that they can live well. But some, like that lady at the WOW conference, choose to die well too. I would have more choice if I had cancer – at least then I could simply refuse treatment – but with this disease any suffering will go on as long as my brain dictates. I am powerless. Powerless to live the way I want to, and so I scrape back control whenever I can, but many days it feels that I am fighting a losing battle – and I am. But I’m powerless to die, too. I would go to Switzerland if I didn’t have to die knowing that my daughters would have to make that return journey on their own. If assisted suicide was legal in this country, and I knew my girls would not be in trouble afterwards if I needed their help, then I would be first in line. The only thing that remains is the question of when, and that is the state of limbo I live in. Do I want to continue long enough to see myself move closer and closer towards the edge of the cliff? When do I say that I’m close enough? When I know for sure – when I’m close enough to look over and see a blank below – will it be too late to say it then?
There are, of course, changes that can be made in between. I know there is an expiration date on how long I can live independently at home. There may be other options I haven’t found yet or delved into. How much time can I borrow from dementia by setting alarms in my iPad to eat and take my tablets? These help me continue the basics of caring for myself. The me now doesn’t want to go into a care home. But what about the me that I’ll become? How will she feel about a care home? I don’t yet know her, I’ve forgotten who came before, and I can’t fully trust this me, either. That’s why I prefer the now.
Do you remember that race to hospital? You can’t have forgotten, not that of all things. You sat there in the front of the car, holding on tight to your swollen belly, the little life inside nicknamed ‘twig’ for the last nine months, though you had a better name packed away in your overnight bag. You willed the traffic out of the way: it was the only thing you could do, because they weren’t your hands clutching the steering wheel, they were his.
A few hours later you were sitting on the edge of your bed, your chin in your hands, staring mesmerised at the tiny being wrapped in pink beside you, swaddled so tight only her tiny, perfect face was visible. You wanted to unwrap her like a Christmas present, to hold her miniature hands in yours, and yet a second later it was enough just to watch her sleep again, glancing every now and then at the little pink-edged card on the end of the cot – more than anything to make it more real to yourself. Sarah Mitchell had come into the world four days after your dad’s birthday.
The second time was three years later, and you were still a month off term, but the doctors weren’t happy and sent you to a different hospital for another scan. You drove yourself there, never expecting a problem, but two hours later you held another baby in your arms, amazed at all that extra love you found for this one too. This time the
little pink card on the end of the cot read: Emma Mitchell. But something about that name didn’t feel right. The next day, you heard tiny footsteps coming up the stairs to the ward.
‘Mummy! Mummy!’ A little voice eager to see what was inside your tummy.
‘Look who’s come to meet you,’ you said, introducing these new sisters.
From a tiny gasp a smile grew.
‘When are you coming home, Mummy?’
‘Very soon.’
And then you took the card from the end of the cot, showed their dad how you’d written a ‘G’ in front of it in biro. ‘Don’t you think Gemma suits her better?’ you said.
You promised each of your babies you’d always be there for them.
***
I know there was once another me for my daughters to call any time of day or night when they were stuck or needed a lift home. I know I always went to their rescue. But now there’s this new me. Stuck at Leeds railway station, my train delayed and panic filling my belly, I message Gemma on WhatsApp: The train’s delayed. With a rolling-eye emoji. It’s easy to sound calm in writing. But inside my heart is starting to pound. I keep checking the information board. It simply reads: delayed. I text Gemma again, asking if she can pick me up an hour later than we’d planned. More eye-rolling. And then the board goes blank. I brace myself for news, but it flashes up a moment later: delayed.
Somebody I Used to Know Page 21