Somebody I Used to Know Page 16

  ‘Shall we get started?’ Gemma says, sipping at the last of her tea.

  We wander from room to room, reading on the front of each box what it contains, my memory of every treasure I’ve ever collected failing me until we rip open each box.

  ‘It’s like Christmas,’ I tell Gemma as I lift out a lamp I’ve had since my twenties.

  The fear and panic leaves me then, replaced instead by the excitement that I had been searching for as I start piecing together my new forever home, relieved that it was packed up in one of these boxes all the time.

  ***

  ‘Didn’t you have those clothes on when I came the day before yesterday?’

  I’ve opened the door of my new home to Sarah. She steps in as I look down at my outfit; blue walking trousers and bright green shirt. It’s then that the confusion of the day before comes back to me. I only seem to have two sets of clothes. I’d washed this outfit yesterday so I had something to put on today. I’d looked around rooms, poked around in a few unpacked boxes, inside the washing machine, but I couldn’t work out where any of my clothes were. Had I left them behind in York, I’d wondered. Or at Gemma’s house?

  ‘I don’t think I can have unpacked everything,’ I tell Sarah. ‘I can’t find any of my clothes.’

  ‘They’re in your wardrobe, Mum,’ she says gently, leading me upstairs to the bedroom and opening doors on one wall. As soon as she does, the colours come alive beyond them; rails of blouses, piles of trousers neatly folded, jumpers, T-shirts. Why hadn’t I seen these fitted wardrobe doors? I’d been in and out of this room dozens of times. I take the handle from Sarah’s hand and open and shut the door a few times. I still can’t work out why I hadn’t realised they were there. I leave the door open as a reminder and go back downstairs.

  Over the next few days I walk past the spare bedroom, each time noticing the open door. I wander in and run my hands along my clothes. I take different things from the wardrobe each day, no longer having to wash each outfit as I wear it.

  A few days later, I’m in the kitchen making a cup of tea. It’s a tiny kitchen, smaller than my old place in York, and there is a door through to it from the hall, another from the living room. But today they are both closed. I turn to get the milk from the fridge and suddenly I feel completely disorientated. I look from one door to the other, utterly confused. Where do they lead? Anxiety starts to rattle inside my chest and for a moment I’m afraid to open each one, not knowing what’s beyond it or where it will lead. My breath is short, my heart pounding. I’m lost inside my house. I reach for one of the door handles and tentatively peer round. It’s the living room, still, silent. I wander into it, and then back into the kitchen, closing the door behind me. And when I turn around, it’s happened again. I open both doors then, walking out into the hall, back into the living room, back through into the kitchen, one continuous loop taken time and time again until my heart settles back down inside. Back in the kitchen, I notice something shiny on the windowsill – a screwdriver. I take it in my hand and start unscrewing each door from its hinges. I stand them up in the hallway and from there I can see right into the kitchen. Back in the kitchen I can see both the hall and the living room, the anxiety replaced by calm.

  A day later, I’m in the kitchen again, admiring the gaps where doors had once stood between the rooms, congratulating myself on the idea to remove them, when suddenly my eyes are drawn to silver handles. I pull on one, it opens a cupboard and inside: ‘My cans!’ I say to myself. Peach slices, rice pudding, baked beans; they’re all hiding inside. But it was the same thing that had happened upstairs; just like the fitted wardrobe doors blending into the wall, my eyes hadn’t seen these kitchen cupboards either.

  I pick up my laptop, scour the internet for an answer on dementia and kitchen design, and read something about see-through cupboards, but it would cost a fortune to replace them all, plus the chaos behind them would look so untidy. I close each cupboard in turn, testing myself on what I can remember inside. It is like one of those game shows, where prizes are covered over and you only win what you can name, and yet, I can’t remember a thing as soon as each door is closed again. The handle is the only clue that anything is inside, and I’m surprised all over again to find cups and bowls and glasses and plates neatly stacked inside.

  And then I have an idea. I open each cupboard in turn, taking a photograph of the contents, then I go upstairs and print every single photograph off on my printer. I return downstairs with a dozen pieces of paper, a roll of Sellotape, and on each cupboard I stick a photograph of what’s inside. I then go upstairs, doing the same for each space behind each wardrobe door. I stand back to admire my work, a view to what’s behind this wall of doors – how will I forget I have clothes now?

  I’m smiling as I return downstairs and flick the kettle on, dementia outsmarted once more.

  But a few days later I notice there is something else. Whenever Sarah or Gemma come over to the house, they nip and use the toilet downstairs.

  ‘I keep forgetting it’s there,’ I say. To me it’s just a closed door, not leading to anywhere. I walk straight past it every time, and it’s not like I can keep it open like the wardrobe doors to remind me.

  Later that day I’m in Barnitts, my favourite hardware store. It’s an Aladdin’s cave that sells anything and everything, even two nails if you only need two. I’m strolling round when I notice a rack of adhesive letters. My eyes fall on the Ts, and I have an idea.

  ‘I’ll take these two,’ I say, fishing enough coins from my purse to pay for the two Ts.

  When I get back home I put one on each toilet door; that way I won’t forget.

  As the weeks wear on in my new house, I start getting more organised, deciding what goes where, what needs to change. Some people who come to the house comment on the fact there aren’t any mirrors anywhere, but more and more these days I find them confusing and disorientating. To me, a reflection doesn’t signal where the room stops and starts – just like how getting into a lift is now a tentative thing. I’m never sure where the edge is, placing my feet carefully on the floor, unsure whether I might fall off a ledge. But there’s another reason I don’t have mirrors: I don’t want to see the change that’s occurring in me. A few weeks ago I watched myself during an interview and it made me sad to see the person I had become. I didn’t speak the way I used to speak, I didn’t look how I remembered, and I know that as I age it will only get worse. Also, many people living alone with dementia can find it frightening to suddenly spot another face in their house, so I’d rather just get used to not having mirrors around before I get to that stage.

  Is it possible that dementia has changed the way my eyes work or, rather, my brain’s interpretation of what they see? Even TV screens are confusing to me now. When they’re turned off, they are just black, like a hole in the wall, and there have been many times when I’ve strolled into the living room from the kitchen and just seen a black blank where my TV once was. For a split second I’ve had to ask myself whether it has been stolen, and just that momentary loss of reality makes my head spin. I’ve heard of some care homes covering screens with a picture or a cloth when they’re switched off; perhaps I should start doing the same.

  The new house is disorientating in other ways too, as I can forget that whole rooms exist. I finished setting up the conservatory a couple of weeks ago: a sideboard on one wall, two comfortable chairs looking out over the garden. I’d told myself it would be the perfect place to sit and stare at the world outside with a hot cup of tea in my hand. Yet the other day I realised I hadn’t sat in it once; despite putting furniture in it, I was still using it as a walk-through into the garden. I’d been looking out at the birds, but upstairs from one of the bedrooms, gazing over the treetops, rather than on to my new garden, where the birds hopped around, picking and pecking at worms that raised their heads out of the lawn. It wasn’t the room that was the problem; it was the routine I’d got into. The routine made me feel safe, the new room didn’t, and so
I did what I was used to, what felt right, and meanwhile a whole room was going to waste downstairs. I tried sitting in there, but I squirmed uncomfortably in my seat; something didn’t feel right. I sighed, giving up, returning back upstairs and settling down, but it bothered me – it was such a lovely room.

  I thought of all the people – families longing to do the right thing – who had created a space in their home for somebody with dementia. I thought of groups I’d attended where people with dementia raised that exact point: how disappointed their relative had been about the thought they’d put into making that special place, but how they just felt uncomfortable there and had wandered back to the old, familiar place. Sitting comfortably, yet guiltily, I thought of my own lovely conservatory and felt that same sting of guilt inside, for nobody in particular. I decided I had to find a new activity for the room, something to shift me out of my old routine, and so I decided to make it the room where I sat to listen to radio programmes and podcasts. And here I am with my cup of tea, looking out on the garden as the robins and jenny wrens weave in and out of the clematis and honeysuckle that grow up the fence, shaking pollen down for the bees.

  There were many people who showed you the basics of DIY, but nothing taught you as much as the need to be frugal. There simply wasn’t enough money to be wasted on workmen. Why employ someone to do a job when you could just learn how to do it yourself? You started off being taught by your mum; she’d always trusted you to paint the low bits underneath the windows, showing you how to watch out for the drips that ran down the wall, making sure even those tiny hands didn’t put a spot wrong. You’d gazed, amazed as she’d hung wallpaper, impressed at how swiftly she went from the pasting table to the wall, easing every bubble out from behind the paper until it was perfectly flat.

  The next teacher you had was Terry next door. Once the girls’ dad had left, Terry was the one who would give you tips for hanging shelves in the living room. He’d offered to do it for you himself, of course, but that wasn’t what you wanted; the whole point was you needed to be independent; there was that hardened part of you left that never wanted to rely on anyone again. He only had to show you once: left hand holds the dustpan to collect the grime, right hand pushes the drill into the wall.

  ‘Are you sure you don’t want me to help?’ Terry asked again.

  ‘Let me try myself first, and then I’ll come and get you when I drill through the wires.’ A joke – you hoped.

  You waited until the girls were in bed and then sat on the floor with a cup of tea and read the instructions for the shelves again. It’s now or never, you told yourself. You marked the walls, just as Terry had shown you, plugged the drill in, and then you began. The wall seemed to shake a little, but you held the drill steady. Twenty minutes later there was a knock at the back door.

  ‘Everything OK?’

  ‘Ta-da!’ you said, showing him the shelves sitting proudly. ‘I didn’t even drill through the wires and fuse all the lights!’

  After that there was nothing you didn’t want to try. Julie’s brother Robin taught you everything you needed to know about the car; how to fill the window washer, pump up the tyres, check the oil. Though you could be forgiven for forgetting some things.

  ‘Where did you say they’ve hidden the dipstick?’ you asked again, while everyone giggled back at you as they perched on the garden wall. They laughed at you, but you wouldn’t have known back then how full of admiration they were too.

  I drain the last of my tea and pick up my rucksack to leave Gemma’s. I’ve been hiding up in her loft room recently, away from the dust and noise in my own house. It hasn’t been easy accepting that this is the first house I’ve moved into where I won’t be the one stripping the walls and putting them back together again, that my white shirt and black jogging bottoms, splattered with the paint of homes gone by, are as redundant as me now. I’ve gone from being someone who did everything to someone who has to rely on strangers, on workmen to do the jobs that I once would have done. Most people would like the chance to put their feet up, but not me.

  I’d quizzed the painter before he started: ‘You will use dustsheets, won’t you?’

  He promised he would, but something inside just wasn’t sure. So by the time he’d arrived that morning, I’d gone around covering everywhere in plastic sheeting – furniture, beds – just in case.

  ‘It’ll take two weeks to do a house of this size,’ he said.

  I had to bite my lip, knowing that I’d done a whole house like this on my own in under a week. Back then.

  I’ve chosen grey for the walls and a darker shade for the carpets. Back in September, I visited the University of West Scotland and was shown around lots of different rooms that had been laid out in a dementia-friendly way to help train nursing staff to understand colour through the eyes of someone with Alzheimer’s. What seemed most important was the colour contrast between objects in a world where dementia can make so many things blur into one, not just memories, but wardrobe doors that become hidden in walls, for example. In these rooms they had red plug sockets to make them stand out from the wall, and I snapped lots of pictures on my iPad, knowing there would come a time when I would need to remember all these useful things that I’d seen. There were examples, too, of what not to do; laying a busy table with matching table cloths, napkins and plates seemed to me an easy way to confuse mealtimes.

  A few days later a man comes round to the house to help me choose a carpet. He sits down and pulls various samples from his case. I know once I would have found it easy to systematically eliminate each one, but this time the choice is overwhelming.

  ‘It’s hard enough choosing carpet ordinarily,’ I tell him. ‘And even harder when you have dementia.’

  He puts half of the samples back into his bag.

  ‘Do you think that a soft pile would be a problem?’ he asks. ‘If you have something that leaves footprints, would you ever think they were someone else’s footprints, would it confuse you?’

  ‘I’d never even thought of that,’ I say. But I’m pleased he’s asked.

  He spends extra time going over things with me, making sure we’ve thought of everything, and in the end, he helps me choose a medium-pile dark grey carpet, something that won’t leave footprints behind.

  The carpet fitters are not so understanding. I have paid them extra to move all the furniture around and put it back exactly in its previous place.

  ‘I have dementia,’ I explain. ‘That’s why you need to put them back where they came from, otherwise they will just not exist for me, and I’ll find it confusing if they’re in a different place.’

  They nod, chewing gum, looking distracted.

  ‘Perhaps you could take photographs on your mobile phones?’ I suggest. ‘Just to make sure you remember where everything goes.’

  There’s a pause and they look from one to another. Was that an eye-roll?

  ‘Don’t worry, love, we’ll remember to put things back.’

  I hang around in the kitchen, watching as they work, but when they move into the conservatory, I know I have to leave; my chest feels tight, my hands clammy. I have a bad feeling about this. As I prepare to leave, I notice the television has been moved out from the wall, the wires hanging helplessly from the back. I quickly snap a photograph of them on my phone, just in case they’re not plugged back in when I’m home.

  Several hours later I return.

  ‘All done,’ they say cheerfully, as I close the door behind them.

  I wander around my house, pleased with the colour, happy that the last of the workmen have left. I spot the TV in the corner, the wires flopping loosely from the rear, nothing plugged back in. I grab my phone and sit on the floor, using it as a guide to plug them back in the way they were.

  It’s a few days later when I wander into the conservatory and find a vase. I pick it up, let the coolness of the shiny glaze roll around in my hands. Where had I seen it before? And then I think of the carpet fitters. What else was out of place? But of
course it’s impossible now to remember where it once all stood.

  I open the microwave and sigh: another bowl of porridge. Who knows how many days it’s been in there. I lift it from the plate. Some of the sticky, milky oats have rolled over the top of the bowl, and I have to tear it from its hardened place, a clue perhaps as to how long it has waited for me. I persuade the contents from the bowl, spooning them into the bin, then throw it into the washing-up. Was that yesterday? Today? Two days ago? Had I eaten breakfast that morning? I stare at the Fitbit attached to my wrist as if it might offer up an answer. It stares blankly back.

  I know there was a time when I liked cooking, when making a bowl of porridge wasn’t something I needed to plan or set alarms for – alarms I then instantly forgot. Then, there weren’t bowls discarded in the microwave, the hardened contents clinging to the porcelain. I know it was different once. There was my favourite curry, my signature dish, all cooked from scratch with pinches of this and that, herbs and spices ground together, the smells that filled my kitchen. There was the last summer I had friends over, when I had to barricade myself in the kitchen with chairs to stop myself wandering off and thinking of something else. It had been stressful making it then, coordinating all the different pots and pans, multitasking an impossible feat. Panic replaces any joy that I once got from cooking.

  I cut down at first – no more than two pans on at the same time. I could still make myself a meal then. But when the lids were on, how did I know what was underneath? Too often it would end up blackened at the bottom of the pan, the screech of the smoke alarms ringing long after I’d stopped trying to scour it clean. I made friends with the local fire brigade and they came to fit more smoke alarms in my house, but that just made the ringing in my ears louder when I burned something.