Somebody I Used to Know

by Wendy Mitchell

  I manage to travel and get around because I have to. If I didn’t, I would just sit at home and stare out at the garden, my brain melting like an ice cream. I have to deliberately make life difficult for myself, going up and down the East Coast Mainline between home and London, across to Bradford, up to Edinburgh and Durham. Navigating my way through Tube stations and London streets. Thank goodness I was always so organised before this disease; many people I know who were never the most organised people, by their own admission, have struggled to learn this unfamiliar skill. I beat dementia by still being organised.

  Each week I print off instructions and emails so I remember what I’m doing or talking about every day. I put them all in a pink folder on my kitchen worktop, with train times and detailed instructions about any changes I need to make and printouts of maps and photographs of the building I need to find. Not only does it keep me from getting lost, but it gives me that sense of familiarity when I get there, because I know what I’m looking for. On trains I set an alarm on my iPad to remind me when I have a suitcase with me, otherwise I’d walk off and leave it. A stay in a hotel for conferences could be quite terrifying, but I overcome that by being organised: leaving the curtains slightly open so I don’t wake up in the night thinking I’m in my room at home; putting a Post-it note beside my bed before I go to sleep with a reminder where I am when I wake; sticking another to the door to remind me to take the key card. I try to work out how to turn on new showers, but often give up, because even if I do, I have no idea how to change the temperature.

  Life is exhausting in a way it never was before. Even remembering to write things on the calendar is challenging, and twice recently I’ve had to let people down because I double-booked myself. It’s happening more often.

  I sit in front of the television. Who would know if I wasn’t coping? Yes, I have Gemma and Sarah nearby, but they won’t know if I get up in the night and head for the front door, or if I leave my living room and forget which way is upstairs. How many more people are living out there alone with dementia without anyone to notice that life has become more frightening, more difficult, more tiring? We don’t have the support of someone to cut up our food when we can no longer coordinate the use of a knife and fork. I only know when to eat because an alarm sounds on my iPad. And yet for every clever way I find to combat dementia, it sometimes feels that I am punished for it.

  During the eighteen months since I retired, I have been receiving a Personal Independence Payment from the government. It’s not means-tested, but based on the practical effects of a condition on a person’s life. Recently I was invited for a reassessment and found my way to the office by plotting my route as normal and using a walking app to direct me. The fundamental flaw in assessing people with dementia is that the assessment expects us to recall things, like exactly what we struggle with on a daily basis. But I couldn’t remember, of course I couldn’t. A few weeks later I received a letter saying that I was no longer entitled to the payment because I can talk normally, walk normally, prepare a meal and have an adequate memory. All of these things are not true. I must have told them how I do speaking for the Alzheimer’s Society, but did I explain that I have to write every one of my speeches out and then read it, because otherwise I will just forget what I’m talking about halfway through? It feels like I’ve had a financial lifeline taken away from me for simply trying to stay out of full-time state care. I feel as though I’m penalised for trying so desperately to cope.

  Another thing dementia is stripping from me is my emotions. So I can’t even feel angry, just sad.

  You were never one to rant and rave. Your anger was usually expressed silently. You didn’t need to shout at the girls if they were arguing; simply crossing the living room and turning off the TV was enough to tell them you were cross. Even as a child you didn’t have tantrums, so it probably comes as no surprise that anger – an emotion not that deeply bedded inside you – was the one taken so early. There was just one thing that made your blood boil – that inexplicable anger that started deep down in the pit of your stomach and rose up until your head felt ready to explode – and it was the pain you saw in your girls’ faces as they waited for their dad to come and pick them up. Once he left he only had to get it right once a month, but he couldn’t even do that. You’d see them, up at the window waiting for the familiar sound of his car, their chins nestled into the back of the sofa, their eyes lighting up and dulling a little more every time the sound of a car engine wasn’t his.

  ‘He’ll be late,’ you’d tell them, in your best neutral voice. ‘He always is.’

  Swallowing down the anger that threatened to burst from within.

  ‘It’s probably busy on the motorway,’ Sarah would say, jumping to his defence, turning back to watch the cars while Gemma willed the time to go quicker by picking up a book to read, both ears still on the road.

  You’d promise yourself that when he turned up you wouldn’t say anything; you knew that all would be forgiven instantly by the girls as they rushed up to him with hugs and kisses and clambered into his car, relieved more than anything else that he was here to get them.

  ‘You’re late … again,’ you’d say, the anger making your voice waver. Not that it made any difference.

  That’s what made you mad then. Now it would just make me sad.

  I’m walking along London’s busy Euston Road. Traffic whizzes by, the sound muffled by the bright-pink earplugs I’m wearing. I look down at my route on the map I’ve printed, a finger ticking off each landmark – the British Library, Euston Station, Madame Tussauds – it was worth the 5.30 a.m. start, as everything is going to plan. I walk past Regent’s Park and the traffic noise fades into the background. I look up at the huge white mansions standing tall behind handsome gates, each garden showing the first signs of spring: a daffodil raising its head to the sunny morning, a purple crocus sitting happily in the shade.

  I’m here today to speak at the Royal College of Obstetricians and Gynaecologists and the sense of spring matches my mood, as I’ve been asked to speak twice today, opening the afternoon session too, and so inside my rucksack are the two speeches I’ve written, packed with thoughts that I’ve crafted especially for the occasion.

  I arrive at the gates and spot someone waving to me. They seem vaguely familiar and when we meet they tell me it isn’t for the first time, but their name badge – unsurprisingly – means nothing to me. I smile, as I always do, trusting what they say to be true. Inside I’m led up a grand staircase lined with the portraits of eminent physicians and into the conference room, where anticipation begins to fill the room.

  ‘I know I need to get you a cup of tea, Wendy,’ the assistant says. ‘We don’t want to be criticised on your blog for not having one ready.’

  We laugh and I sit happily with my cup of tea, watching the room. To my left an artist is unpacking an array of pencils all colours of the rainbow to sketch us as we speak, and more and more people filter in, everyone chatting and reading through the programme of the day’s events. There will be about 200 people here today, but I never get nervous about public speaking, because people’s expectations of someone with dementia tend to be so low that they can’t help but be impressed when I start speaking. So when it comes to my turn, I start as I always do.

  ‘Please forgive me for reading this, but if I don’t, I will forget what I’m here to talk about, get distracted and start talking about something totally irrelevant, like the way I look in the caricature I’ve just spotted.’

  A ripple of laughter goes round the room and I start.

  As my speech continues, I watch the faces in the room. Many are taken aback at how eloquent those of us with dementia can be if we’re just given the space to be listened to; puzzled faces relax themselves, learning more and more about what it’s like to live with Alzheimer’s. When I return to my seat, it is with applause ringing in my ears.

  We break for lunch and I meet the person who will be introducing me for the start of the afternoon
session. I explain where I’ll be sitting, but she seems distracted, so I wander back to my seat, my notes for the afternoon in hand, waiting for my call. When it’s time, a silence falls over the room, and I shuffle my speech, ready to take to the stage once more. But it’s not my name that is called, but Piers, the man who is speaking after me. He shoots me a look from the next table, as confused as me. I glance back at the programme: did I get it wrong? But it’s definitely my name first. Perhaps they’ve swapped us over.

  And so I sit there, half-listening to Piers’ talk, but the questions roll around in my brain, and the confusion starts to nibble away. After a while I hear the audience applauding, I sit up in my chair, straighten my thoughts and my notes out in my lap. I’m ready to hear my name, but instead it’s the next speaker being called. I get up then and shuffle from the room. I feel empty inside. Not angry but numb. I feel hurt, used. On the way out I see one of the organisers.

  ‘They forgot me,’ I say.

  ‘Oh, did they? Never mind, you spoke this morning.’

  I stand in front of him, thoughts not coming quickly enough, something else rushing to the fore: an uncontrollable sadness. I leave down the grand staircase, the beauty of it dulled by the disappointment of the day. I walk back along Euston Road, tears blurring the path, the traffic making me jump from the kerb, the urgency with which I left meaning I’d forgotten to put in my earplugs. I don’t stop until I get to the station. I just want to be home. I get on to a train. I sit. I’m sad.

  Being involved makes dementia bearable. But being forgotten …

  The train pulls out of the station.

  Words are often lost now. Images are my way of remembering. If I have a conversation, or meet someone new, I probably won’t remember the detail of what we discussed, just the feeling I had when I left them. When we meet again, I’ll have that same feeling. It’s almost like intuition has taken over from the working, practical brain I once had. Those basic instincts have returned. Do I feel happy and safe here? I sense people’s moods too; it’s almost like I sense an aura of emotion around them, my brain plugging into the bits it can remember, rather than the overwhelming detail that it won’t.

  I have to work harder now at being a good friend or a mother. I don’t want to give up thinking about others – it just takes a little more organisation. Where before I would have juggled what was going on in their lives alongside my own, remembering in the back of my mind if a friend was going through a hard time, or if Gemma or Sarah had a problem at work, now I have to write it down on a Post-it, or set an alarm on my iPad to ask how they’re feeling days later. I scan the last email or WhatsApp conversations for things we discussed the day before, so I can ask Gemma how her night out with friends went, or if Sarah managed to fix her car, or if Billy’s paw is better.

  Today I got a text from my friend, Julie.

  Still waiting for news on my new grandchild, she wrote.

  Wonderful! I typed back quickly. I was so excited. I’m so happy for you.

  Yes, the baby was due last week, but hoping it will arrive in the next few days.

  I stared at my phone. The baby was due now. I knew Julie well enough to know she would have mentioned it before – several times – and yet it had felt like hearing it for the first time for me.

  It’s not just bad news we forget – it’s good news too. Too often people think about those of us with dementia forgetting that a loved one has died, of grieving over and over. But the flip side is we can celebrate good news again and again too. Of course, Julie enjoyed another chat about the baby. Perhaps it’s not so bad sometimes to live in our moment, whatever that moment brings.

  People say to me, ‘You haven’t changed.’ It’s probably more to do with what they were expecting, what they had prepared themselves for. When friends come to visit, in those first few moments after I open the door I see the way they look at me. They think I don’t know, but their faces show that uncertainty, quickly working out how to gauge the situation and how different I might be from last time. Likewise, I see their shoulders relax, the lightness in their voice return, when they realise they haven’t anything to worry about, it’s still me inside.

  Some friends said recently: ‘You haven’t changed at all since last year – you look the same.’

  Perhaps that’s what they think I want to hear. Afterwards I thought that I should have asked: ‘Just a few more grey hairs and wrinkles, eh? What should I look like? What did you expect to see?’

  What is my response meant to be to this comment? There is so much I could say. I could talk about what I do every single day to stave off the symptoms of my dementia, to outwit a disease I know ultimately will win, buying myself some time. That I tire myself out in a world that is not made for me nowadays, that is confusing unless I’m well prepared each time I step outside my front door. Are they expecting the rapid deterioration that you see in some? I am convinced this is often due to ‘writing people off’ post-diagnosis.

  I have to work so hard for people not to notice these differences, because if they do, I don’t want the pity that they hand out alongside those realisations.

  Friends don’t see what I see: that I can’t walk like I used to because dementia has changed my gait, that I’m more prone to falls, that I need a stick. That even on a walk around the village I have to stop to let people coming towards me pass, otherwise I get confused about which direction to walk in. A walk in the Lake District that would have taken two to three hours a few years ago, now takes five. I find it frustrating that I can’t zip up and down fells and over rocks like I used to. It’s not age that has slowed me down, but dementia that has slowed my brain. I’m slower, I’m wobblier, and I have the bruises all over my arms to prove it, but I roll down my sleeves and I get on with it.

  They don’t see that the condition of my teeth is deteriorating because I forget to brush them twice a day, that the dentist has come up with tips and tricks to help me, suggesting a laminated brushing chart by the sink to tick off morning and night, an alarm in my iPad to remind me to brush, playing my favourite song so I don’t get distracted and wander off before I’ve brushed them for long enough. They’re good ideas, but I feel like a child.

  I haven’t mentioned to my friends that my brain is no longer able to make a simple decision like it once did, that the other day it took me over a week to work out how to book a train ticket on my iPad, taking in three changes and organising seat reservations. That if I don’t book a train ticket in a while, I completely forget the process and wonder how people buy a ticket when they want to travel. I want to give up then, when my brain rings inside with frustration. It would be easier, too. But not if I want to win one day after the next, not if I want to stay one step ahead of this disease. But it claims minor victories every day.

  I can’t use the telephone any more: the person on the other end – especially if they don’t know me – wonders why silences fill the spaces between us, and I find myself giving a random response, just to give them something. I agree to things, knowing that saying yes will bring the conversation to an end. Callers speak too quickly, ask too many questions, and so now, if the phone rings, I just stare at it, too weary for the confusion that will follow if I lift the receiver. I allow the answerphone to speak for me, asking the caller to email me.

  The other day Sarah and I went to the garden centre and decided to have a bite to eat while we were there. The choice of sandwiches was dazzling, all sorts of fillings, and yet I looked down at my tray as I went to pay and realised I had the same as always: tuna. Why is it always tuna? Every single time. Because anything else is too stressful, I know I like tuna and so I choose that, and I tell myself that I am in control, that I am choosing tuna to avoid the stress of having to make another decision. But who am I trying to kid? That’s not me in control – it’s dementia. It’s just seduced me into working with it, not against it.

  People have looked at my blog and questioned how I can possibly have dementia. They wonder how someone with a dise
ased brain can possibly write so fluently. I’m thankful that part of my brain isn’t broken, that while words lose themselves on their way out of my mouth, the written ones make it on to the page before it’s too late.

  It’s sad when the things you continue to do make people question whether you have dementia. They’re not inside my brain to hear or see the hallucinations. Would it make them feel better to see me on a foggy day, the type where I curl up under my duvet and hide away from the world? Would that make the disease fit better into the pigeonhole they’ve allocated it? I’m pleased that I have broken the mould by challenging myself while I still have the chance, but how much more difficult does that make my life because those around me don’t see this invisible disease?

  ‘You haven’t changed,’ they say. But I used to run and cook and bake and work and drive. I survive now by adapting, by focusing on what I can do. But I don’t recognise me, the person who was so fiercely independent and yet now has to accept help. I do what I can. I potter in my daughters’ gardens because it makes me feel useful; I watch seeds flourish and thrive and it makes me feel happy. I enjoy eating the food that they make for me because I can no longer cook for myself. I limit my time with my friends to two hours because anything else will leave me foggy and unable to concentrate, but this way, at least, I can still see them.

  But there are other times when the difference between the old me and the new me hits me so hard it leaves me without breath.

  I’m using WhatsApp with a friend, and our conversation has bounced back and forth for most of the afternoon. We’ve been chatting and joking, not a second’s hesitation, my dementia brain hidden by technology. Ten years ago instant chats wouldn’t have been possible.