Somebody I Used to Know Page 15

  By the evening – the biggest boxes unpacked, the television tuned in, takeaway ordered as a special treat – it was feeling more like home already. Two days later it would look like you’d been there years. Then you remembered one more thing before putting your feet up: the door that needed to come off Gemma’s room. Screwdriver retrieved, you climbed the stairs.

  It happened again the other day. My diseased mind was playing tricks on me. I looked up in the half-light at Gemma’s house and there was my mum bustling about in the hallway just how I remembered her; she was wearing the same long, multicoloured dress she always did, her two hip replacements never righting that limp. I sat perfectly still, remembering not to panic, while my eyes fought with my logical mind, raking through questions about dates and attempting maths to prove whether what was in front of me was as real as it looked. What year are we in? Is she still alive? How old is Gemma? Does that give me any clues? Mum turned to me and smiled then and in that moment I didn’t feel afraid, just calm, confident even, as if I knew this wasn’t real, more like I was being granted a gift, another chance to see her as she was. That my disease, and everything so terrible that it steals from me, had also allowed me a much-loved glimpse of the past.

  Another time it had been Dad I’d seen, in the same half-light, but this time in my new house. He was never without a suit or jacket, except when he was relaxing at home, but this time he wore a cardigan, and I knew then he must feel at home in my new place. But he wore something else: the sadness that never left him after Mum’s death. Just like Mum, he smiled and I smiled back, even though logic was trying so desperately hard to kick in and remind me that the man in front of me – so real to me – was nothing more than a trick of my mind.

  Did I think in that moment that Mum and Dad were still alive? Probably. Did it really matter? Probably not. I don’t need to be told over and over that Mum and Dad are dead; what difference does my fantasy make to anyone else? People without memory problems often forget that those of us with dementia think about things in the past, and so the helpful response is probably to ‘go along’ with our experience, rather than trying to pull us back into the present day. It’s not unethical to do that; it’s just valuing the person’s experience, because for them, it’s as real as this book you are holding in your hands right now.

  I’m glad that no one was there to tell me it wasn’t real – what’s the harm in Dad flashing me that same familiar smile, leaving me warm inside at the memory of it? Let me have my fantasy; it’s more than most have. Doesn’t anyone who has grieved for a lost loved one tell themselves they’d exchange all of their worldly possessions for just five minutes back in their company? And just like the fog that descends on my day, the only thing we know for sure is what that doctor said, that it will pass. Logic doesn’t always have to win the day. Perhaps there is no harm, on some occasions, letting the disease win once in a while.

  The pub was closed and you were the only one there, three or four years old, toddling between the tables, everything seeming so large and looming; tables and chairs to crawl over or under, shiny bottles of all different colours neatly stacked behind the bar, windows too tall to see out of even on tippy-toes. Mum and Dad were upstairs keeping the books or taking barrels down to the cellar before the customers arrived. You peered on to the tables, two tiny hands clutching the sides, your toes reaching for the ends of your shoes, the ashtrays overflowing with cigarette ends, too early for the cleaner to come.

  You picked up a brush and started pulling it across the wooden floor littered with ash and beer mats, over sticky patches where beer has splashed and seeped into the grain. You brushed and brushed, bristles kicking up the dust, and then you heard it – the sound of metal. A coin shot across the floor. You followed it along the floorboards and finally it came to a half. You bent down, hands on grubby knees, and picked it up – a halfpenny. You put it in your pocket, a promise to yourself to buy sweets, and then you collected your brush and resumed your big-girl task. While Mum and Dad busied themselves getting ready to open up for the day, the pub was your playroom.

  I check the internet every day, just in case today is the day, and so many days have gone by like that. Then one day there it is, waiting for me; a semi-detached house in the same village as Gemma. Three bedrooms; not too big, not too small; the perfect price. Better than anything is the beautiful paddock that the large sitting-room window looks out on to, a picture framed with trees that will bring birds and other wildlife almost to my front door. It is everything I have been looking for. I send the details to Gemma and she calls to make an appointment to view, and then a few days later here I am, standing in the house that is to be my new forever home.

  It’s empty, and I glance around at the blank walls, trying to picture what from my house might hang there, or which chair I could put where. It isn’t as easy as it once was to picture a new life; my brain has to work harder, and the images don’t flash in my mind as I pass from room to room as they once would have done. It’s different now, and I can’t think what goes in which room without it all laid out for me. But there is still that view.

  ‘It’s perfect,’ I tell Gemma as I look out across the long flat lawn at the back, and I don’t recognise the way she looks back at me.

  ‘What about the steps up to the front door – will you manage?’ she asks.

  She knows the old me would have found the snags, would have looked more closely at the reasons not to buy the house, would have very much been guided by the head, not the heart. But I ignore her, going back to stand in the huge living room, bigger still without curtains to hug the window frames, and I fall in love with the paddock all over again.

  ‘This is the one,’ I tell her.

  Weeks later, and my house is on the market, an offer made, solicitors talking of a moving date. I know the old me would have been excited by the pace of things, but now it feels dizzying, as if each update that arrives in my inbox holds in equal amounts surprise and excitement. As moving day comes closer, I start packing boxes. I do things the way I always used to, instinct kicking in, trying to work on autopilot. Cupboard underneath kettle, I write on a white piece of paper that I tape to the front of the first box that comes out of the kitchen. Cupboard next to the cooker, I write on the second.

  The following morning, though, I come downstairs and pad into the kitchen in my dressing gown and slippers. I read what’s written down on the front of the boxes while I sip at my hot tea. Cupboard next to the cooker? I puzzle. I open the cupboard door, it’s empty of course, but I’ve no idea what once lived inside it. Whatever it is, it’s in that box, all taped up and waiting to be decanted at the other end. But I try something else that day. Instead of the location, I pull open the box and decide to list every item I have put in there. Only I keep forgetting. The black marker pen hovers over the blank sheet of paper as I close my eyes, wrinkle my nose, try harder and harder to get my brain to recall what I just saw in the box. I open it up again. Of course – kitchen utensils. I close it back up, seal it with more tape. Then wonder what I’d just told myself to remember. I undo it again, the whole process taking much longer. The next time I go to put things into a box, I stop. First I write: mixing bowls, small jug, ramekin dishes, and then I put them inside, a smile to myself as I tape up the box that I’ve found a way around the problem once again. If only I could take this disease out of my head and put it inside a box, Sellotape it up and lose it between this place and the next.

  As the days pass by, sealed cardboard boxes grow around me and mystery thickens overnight. I come down in the morning and wander my house, lost for a while, the boxes and their contents giving nothing away.

  Gemma and I make two more visits to the new house, not to measure up for curtains or gaps for furniture, but just to give me a moment to stand once again at that lovely big living-room window, to look across at the paddock and picture my new life.

  It will be just like any other move, I tell myself silently as I stand there. But it’s already differen
t.

  They were one of those typical couples, the ones where the wife takes the lead; she takes his coat from his arms, she folds it over, sits him down, checks on him – once, twice – then goes off to fetch a cup of tea. I see it a lot, wherever I go. I know they’re only trying to help, so why does it always look to me as if these husbands – or wives – are so much more advanced in their disease than me, someone who has no one to fetch and carry for me, to finish my sentences, to decide that I can’t even manage the small chores that are still very much physically and mentally possible. But there’s something else I notice about these couples too. I sit with this man while his wife fetches a cup of tea, and I see the guilt written large across his face, in every pore or fine line that reveals more about the years gone by than his memory can recall. She comes back and sits down with us again.

  ‘We were planning on going to see our son in America,’ she says. ‘But of course, we can’t do that now.’ I don’t know this woman, but the sting in her tone is unmissable. ‘Nor see those dear little grandchildren of ours,’ she adds.

  Her husband sits beside her. He’s staring into his lap now. Those lines made deeper with the weight of the guilt.

  ‘You could go on your own?’ he tries softly.

  ‘And who’d look after you?’ she snaps.

  He sighs, knowing she’s right, that he and this disease that has claimed the inside of his head are the reason for his wife’s unhappiness.

  I clear my throat, try a lighter tone. ‘Do you see them on FaceTime?’ I ask.

  The husband’s face lights up. ‘Yes, we see them often on the screen, clever stuff the technology they have these d—’

  ‘Yes, but it’s not the same as seeing them in person.’ Her comment instantly extinguishes the twinkle in his eyes.

  ‘Yes, but it’s better than not seeing them at all. Just think, twenty years ago we wouldn’t have been able to dial their number and then see their faces appear.’

  ‘Twenty years ago we would have been able to travel there,’ she shrugs as he shrinks into his chair, the knife twisted further into position.

  He glances at me and we share a look. There is no need for words – we understand everything that we are not saying. Neither of us has chosen to have dementia; it has happened to us, and we don’t even know why. It is a question that plagues those of us living with it every single day. It steals from us memories, and little dignities that will only grow larger as the disease makes its march on our brain. But it inflicts something else on us: a guilt for the people who walk beside us: husbands, wives, children.

  I hate my disease, not for what it’s stealing from me now, but what it plans to take from my girls, the havoc that it will wreak on them. It rides roughshod over lives, leaving tattered and shattered skeletal remains where a whole person once stood. Most days, like this man, I focus on what I still can do. I’m grateful for small things like FaceTime, which allows me to still see my daughters and saves me the confusion of a telephone call. But there are other days when dementia worms its way into my thoughts and takes hold with flashes of reality that I desperately try most of the time to avoid. It’s not possible then to stay positive, when the losses all come rushing to the forefront of every thought crossing my mind that day, and that in itself makes me lose confidence in myself, my mind, my future, my now. That’s the moment when I’m suddenly and overwhelmingly reminded that the future is only a vague concept, the only certainty is my decline – one my daughters will watch painfully.

  But it’s not just what they will witness that lies heavy inside my head. It’s all the vignettes they will have painted of their own future lives that will need to be erased: a doting nanna playing with their children on Blackpool beach, a ready and willing babysitter, a strong and capable mum to see them through all the ups and downs of life. I wanted to be here for so much longer for them, physically and emotionally. Instead it is the other way round; it’s Gemma I call when the trains are delayed and I can’t work out how to get home, it’s Sarah who needs to sit down with me and show me how to navigate a website. Everybody accepts that their parents will grow slower, but they don’t imagine that as they do, they will forget the face or the name of the child that had loved them their entire life. That is the cruelty of this disease, that is where the guilt is buried deep.

  The new scenes I sketch in my mind are too painful to finish. The guilt then is a motivator: it’s enough to make me articulate my future wishes a little more clearly, be adamant that I don’t want either of them to be my carer, that I’d rather they leave it to a professional. When they were children I popped them in the bath in turn, soaping their shoulders with warm bubbles frothing with love, and I couldn’t bear for them to be asked to do the same for me when I’m no longer capable myself. To lessen the guilt, it feels more important than ever to write down my wishes in the power of attorney document, to sit around a table with my daughter and have those awkward conversations too early.

  I remember sitting with another husband and wife at a dementia group. When the wife went to get a cup of tea, leaving us alone to chat, the man told me how struggled he at home remembering where everything is.

  ‘I forget the simplest of things – where the knives and forks are, where I’ve put things. It’s so frustrating. It makes me feel stupid,’ he said.

  ‘Have you spoken to your wife about this?’ I asked.

  He shook his head. ‘Oh no, I don’t want to worry her. She’s worried enough without me adding to it.’

  I spotted it again then, the guilt carved deep into his face.

  ‘But how will she know how to help you if you don’t talk about it?’ I said. ‘And how can you help her to understand if you don’t talk to each other? If you don’t, she’ll just make up her own stories without knowing what’s really going on.’

  His face relaxed a little then. ‘Oh, I never thought of it like that,’ he said, as she appeared back at the table with three cups of tea. ‘Maybe I should.’

  If people don’t talk about how they feel and the problems they’re having while they’re still able to articulate them, how can they ensure what happens later, once they’re past the point of communication?

  When I sat down with Gemma and Sarah to discuss my wishes, laying on the homemade afternoon tea to sweeten the mood, I was surprised to hear how different their thoughts were about what I might want. But I was able to tell them. Imagine the sadness and emotional distress this would have caused if we hadn’t talked. Imagine the upset and disagreement if we hadn’t talked. Imagine the distance it may have put between them if we hadn’t talked. Imagine the sadness I would have caused in my death that I couldn’t put right, if we hadn’t talked.

  Guilt is hard to live with, but it exists to help us put things right while we still have the chance.

  11

  You never liked to make life easy for yourself, did you? Once you got that career bug, the only way for you was up. You always liked a new challenge: perhaps that’s what attracted you to a job all the way up in York. Instantly you remember that junior-school trip you’d made from Ferrybridge to York, happy memories that had lasted a lifetime. Suddenly you were back there, picturing yourself as a child walking along the walls of the city and beside the river, a snaking line of giggling classmates, sunny days and ice creams. It was enough to make you apply for the job. A year later, Sarah moved with you from Milton Keynes to York, you rented an apartment by the river and you could walk to work at the hospital in five minutes. It didn’t feel like living and working; you loved the city so much it felt more like being constantly on holiday. The hospital was rolling out a new electronic rostering system and you were overseeing it, and when the contract expired after a year, you couldn’t bear to leave the north, so you found a new job in Leeds. You moved there, but you left your heart inside the walls of York city, so there was no choice but to move back and commute on the big blue coastline bus each day. You found a house, which you called your ‘forever home’, then you fell in love with it
and vowed you’d never leave. But that’s where dementia found you …

  Is knowing when to concede empowering in itself? Trapped in limbo, between boxes and homes, waiting for the removals men to arrive, I’m not so sure. The excitement that I know I’d have once felt for this new adventure is lost. I’d usually be planning paint colours or gripped by garden design, but I’ve noticed this time my brain can’t hold multiple plans inside my brain; any solid idea turns to mush with the arrival of another, and everything becomes scrambled and unclear. I focus back on the room, the boxes, my watch that tells me the removal men will be here any moment. Gemma is coming to help me today; Sarah has just started a new job, but she promises me that she will come and visit on her first day off. I’m grateful to my girls for the efforts they make to help, but when I close my eyes and see flashes of images, moves I’ve made before, I know it was never meant to be like this. I was always the one in control, I had always taken charge, and yet now I need someone to tell me what comes next.

  Once all my belongings have been loaded into the removals lorry, I turn my key in the lock for the last time, but I can’t avoid the emptiness that clicks inside the catch. Will it be different at the other end? Much like the disease itself, it seems impossible to create a clear picture of what life will look like in my new house, and uncertainty about the future clatters around in the Important Box on my lap as Gemma drives me away from York. The removals men are waiting on the path when we arrive, along with the old owners, who are there to hand me the keys. They’ve mowed the lawn to save me a job. Once everyone has left, we open up Important Box first and pull out my familiar red kettle, two mugs and some tea bags. A taste of home. I stand again in the big window in the living room, and there on the sill is a card addressed to me. It’s from the old owners, welcoming me to my new home. I look around at all the boxes stacked high, little knowledge of what is in any of them, and I realise I have no idea how to turn this house into a home.