I went down to one saucepan. I was sitting in my chair one day, chatting to Sarah on FaceTime, when I wrinkled my nose.
‘What’s that awful smell?’ I said.
‘You’re not cooking, are you, Mum?’
She must have seen the flicker of recognition on my face before it even reached my brain.
‘Take me into the kitchen with you,’ she said.
I found it then, one pan left on the hob, the frazzled contents of something now unidentifiable inside. We made a new rule that she wouldn’t call again at mealtimes.
I bought a timer after that, a bright yellow one, which would alert me when I’d left some food in a pan. But it didn’t really matter what colour it was if I forgot to set it.
It is not just the joy of cooking that’s now lost, but eating too. I’ve always loved food, mushrooms and chillies in particular, and I’d have them with everything. But more often now I buy them and find them dried and curled up in the back of the fridge. Even my taste buds are forgetting my favourite foods. The way I cook, the way I eat, the way I taste is all changing.
The other day I had some mushrooms. They tasted the same, but I wasn’t rewarded with that same delight – the signal sent to my brain, the dopamine released back. It was just a taste, like any other. It had lost all meaning to me. Maybe it’s not just my brain that is fading away, but memory in other living cells too. The enjoyment has gone out of food now. I eat to survive, but where is the pleasure in that? And should I forget to eat, a flash on my wrist reminds me, so I make a sandwich, or a salad, something that can’t send the smoke alarms into a frenzy. Something bland and tasteless. And I eat it before something distracts me and I wander off and find the lettuce browning and curled on the plate the next day.
It was a funny way to introduce yourself to the new neighbours – up there on top of the shed roof. There were a thousand other jobs to do, but it was a nice sunny day in the overgrown jungle that was the back garden, and while the girls played in the long grass, you decided to tackle the shed roof before another downpour. It must have been the sound of you banging the new felt on with roof tacks that brought the neighbour outside to say hello.
‘You OK up there?’ came the voice from the immaculate garden next door. You instantly envied their perfect green lawn and glanced back at your own patch of thistles and weeds, which covered the girls’ heads.
‘I’m fine thanks, just replacing the roofing felt.’
‘I can see that. Not often you see a woman up on the roof. Do you want a hand?’
You tried to disguise the sigh that fell from your lips. You couldn’t possibly tell your new neighbour what you really thought of his comment.
‘Well, you’d better get used to it, because there’s an awful lot to do out here!’
He laughed then, until his wife appeared at his side.
‘He’d do well to take a look at our shed roof, ’ she said, nudging him hard. ‘I’m sure that needs replacing too.’
She winked at you as her husband found an excuse to head back inside. You carried on tacking the felt on to the roof as the girls came and went that sunny afternoon. The new house was in a cul-de-sac and they loved the fact they could ride round and round on their bikes as they got to know all the neighbours. They were back again a moment later, hunting for treasure in the long grass.
‘There’s a table here, Mum,’ they called, their voices buried in the brambles.
‘And I’ve found an old tennis ball,’ Gemma said, holding it up to the sun.
‘A skipping rope!’ Sarah cried, as they pulled it from the overgrowth, pretending it was a snake.
Over the next few days you got it all cut back and the garden appeared, long and narrow. Once the weeds were gone, the fence was put to shame, so you got on with painting it, one panel at a time, watched over by your new neighbour, clearly hoping his wife didn’t come up with more ideas about what he’d have to get on with next.
I’m on my way home from the shops, turning right into my new lane, my hand on the white handrail beside the path, glancing over to the paddock where birds sweep in and out of the trees that shelter them. I make another right, go up the garden path, reach the front door and dig in my pocket for the key. But suddenly something doesn’t feel right. I reach out and the door handle isn’t where it’s supposed to be. How could this have happened? How can a door handle move? I step back, uncertain, and look again. It’s on the right. It’s never on the right. It’s usually on the left. Another step back from the door, and then the garden catches my eye; shingle where soil should be. I look around then, notice next door’s pots and flowers. My pots and flowers. Why is my house over there? Why am I here? I look again at the front door and it slowly sinks in. This is not my house. This is not my door. I scurry back down the path with my shopping bag. I stand briefly at the end of the pathway and look back at them: three identical houses, three identical paths. Mine is in the middle, of course it is. But it hadn’t been obvious enough. I hurry up my path, my key fitting into the front door.
It happens again a few days later, only this time my neighbour pops his head out of the door as I head up his path.
‘Hello Wendy,’ he smiles.
‘Oh,’ I say, stopping still on the pathway. ‘I’ll be thinking I own the whole street next!’
‘Don’t worry,’ he says.
But I am embarrassed. I do worry. This isn’t me, it’s the disease, but how can my new neighbours tell us apart?
A week later I’m wandering around York and come across a little craft market. There are bits and bobs, little trinkets of York, things inspired from all the history around us, but one thing in particular catches my eye, a stall full of brightly coloured tiles, each depicting a beautiful scene of York – the Shambles, the Minster – and next to them, some painted with flowers. An idea comes to mind.
‘Do you do these with forget-me-nots?’ I ask.
‘No, sorry, not much call for them,’ the man says.
I look around, there’s no one waiting to be served, so I tell him the significance of the forget-me-not, how it’s an emblem for those with dementia, and how useful it would be if I could put one up by my front door.
‘It would help me find my house,’ I tell him.
It’s a moment or two before I see what I’m saying sink in. He takes my email address and promises to be in touch.
A few weeks later a parcel arrives for me. It’s heavy and the postman places it down gently in my hallway. I open it up, six forget-me-not tiles stare back, a beautiful light blue that matches their petals exactly, set off by deep-green leaves, and a glaze to make them shine. The very same day an email arrives.
Dear Wendy, I was very touched by your story of how you couldn’t recognise your house, he writes. Please accept these tiles from me.
I glue one to the wall on each side of my front door that very morning, and stand back to admire how they shine from the path – a beacon guiding me home. What a wonderful gift.
12
Do you remember that one particular Christmas when you were nine? How could you forget? Well isn’t that obvious?
It was never about the presents back then; it was just the make-believe about Father Christmas, the magic in the air, waking up and wondering if he’d been. You’d gone to bed on Christmas Eve, excited as always, squeezing your eyes shut in the hope that sleep would come, followed by someone else. If you listened hard enough, you were sure you could hear sleigh bells. It was like that you must have drifted off eventually.
In the morning the house was quiet and still, no one had stirred and the night still hung at the windows behind the curtains, dawn peering through the gaps at you. You crept out of bed and into the living room, checking round the side of the sofa where any presents would usually be waiting. Only that year there was nothing. The little heart beating inside your chest sank into your stomach then. He hadn’t been. Tears made their ways to your eyes for a moment before suddenly you saw the note.
Look in the kitc
hen, it read.
It must have been written by him.
You crossed the hall then and as you did, you stopped still on the floor, your heart, momentarily broken, now fixed and banging away at your ribcage as if it might jump out itself with the thrill of it all. Because right there, propped against the table, stood the shiniest blue and yellow bike you’d ever seen.
It’s just one week before Christmas and London is extra sparkly – and wet. I’ve travelled down to the capital for the Alzheimer’s Society’s Carols by Candlelight concert at St Paul’s Church in Knightsbridge with Gemma and Stuart, and we’re in a cab making its way across the city. From each window the world outside seems to twinkle back with fairy lights, and shoppers rush from street to street with bags heavy with gifts. The church is packed with people, six to seven hundred, including lots of celebrity guests, I’m told when we arrive, and I feel my fingers grip the speech that I’ve written especially for the occasion.
The service starts and we sing so many carols that I know well, the words not lost to dementia just yet. As I sing, I’m grateful for the fact that these songs have survived so many Christmases. There is safety to be found in the familiarity of this season, in the traditions that come and go, marking another year.
Finally, it’s time for my speech and I go and stand in the pulpit. Gemma looks back at me from the audience.
‘I appreciate the love and support of my daughters whatever time of year, but Christmas is very special for families and has taken on a whole new importance since being diagnosed,’ I say. ‘Christmas just highlights to me how lucky I am and the importance of having loved ones close by. I know not everyone is as lucky as me, so it’s especially important at this time of year to think of those who may not be as fortunate as ourselves. A simple “hello and Merry Christmas” may make all the difference to someone in your neighbourhood this festive season.’
Next a group called Singing for the Brain goes up to the altar. Their choir is made up of people living with dementia, some of whom have already been robbed of the power of speech, and yet music brings the ability to communicate back to them. They sing ‘Silent Night’ together and as they do, I feel goosebumps up and down my arms.
We leave later that evening and head back to Yorkshire on the train the following morning. It’s now just a few days before Christmas and the village is also lit up with colourful bulbs strung up on each house and peering back through windows. This evening, villagers are walking through the darkness towards the duck pond to sing carols together. The crowd gathers around an old-fashioned barrel organ; we huddle together from the biting cold, and I look around at my new community, thinking how the move hasn’t been so bad in the end. We sing all the old songs, every one bringing back memories of Christmases gone by, memories that I thought were lost for ever: the shiny new bike, a prawn cocktail, a paper hat slipping over my nose.
The singing comes to an end and the children gather at the bottom of the lane, the frosty air alight with their chatter. There’s a flash of light then, Santa’s silhouette appears and then the man himself. He walks down the lane, waving to all the children and handing out presents. I see the look on every single face as he passes by, and I can feel it too; the magic is all coming back to me now.
The knives and forks were heavier than the ones you had at home, that’s how you could tell it was Christmas. Your mum never liked cooking, so you always went out to a restaurant for Christmas dinner. You’d have done anything to stay home and play on your new bike, but your tummy was rumbling, so you told yourself it would still be there when you got back.
Your dad drove the cream-coloured van and you perched on your makeshift seat in the back, giggling as you bumped up and down, everyone in a good mood because it was Christmas Day. When they opened the back door, you came tumbling out, just to make everyone laugh.
At the table everyone pulled their crackers and, because you were the youngest, all the grown-ups passed the little trinkets that had fallen out of theirs down the table. You stood them all neatly in a row on the crisp white tablecloth. Your paper hat was far too big for your head and kept slipping down, all the way over your nose, so by the time your prawn cocktail arrived, you had to eat with your nose high in the air, your neck crooked back just to keep yours on like everyone else. You’d watch the waiters and waitresses as they busied themselves around your table, wondering every year why they weren’t at home having dinner with their families too. When it was time for turkey, there was so much food on your plate you didn’t know where to start, but you always had to leave room for Christmas pudding, sifting through the darkened fruit hoping your slice would be the one that had the sixpence hidden inside. You’d search quickly, sure that your spoon would come across the neat package of brown baking paper that it was wrapped up inside. But then a cheer would go up from the other end of the table as someone else held it aloft, and that year in particular your heart sank behind your napkin – until you remembered the new bike waiting for you at home.
For everyone who celebrates Christmas, it’s divided into past, present and future. But for me, the past isn’t there and the future is too scary to contemplate. All I am left with at Christmas is the present. I am sitting in the living room at Gemma and Stuart’s house while Billy curls around my legs, making a valiant effort to tear his attention away from the Christmas tree and the baubles that swing and sway tantalisingly from it. I catch my reflection in one, and for an instant don’t recognise the person who stares back. I know this wouldn’t always have been me. I feel unease that I’m sitting in a chair, hearing the clutter and clatter of pots and pans on the other side of the wall. What did Christmas mean for me before? There’s a blank where other Christmases once existed.
Instead I focus on what it means now. I know that dementia has changed it, even if I can’t pinpoint why. It’s a time for people to get together, for large groups to squeeze around a table, many on makeshift chairs begged and borrowed from the same guests who sit on them. But I find those big family meals too much now, the clatter of knives and forks on plates vying for attention with the voices that rise up over them, criss-crossing the table in various levels of volume. I know this is why I politely turn down the invitation to dinner at Stuart’s parents each year. I’d love to go, but I know it will become overwhelming and that it won’t be the me I know there, just a muted version of myself as I struggle to keep up.
I know I can’t move the house around like I once did to fit in a six-foot tree. Furniture moved to different places would be too confusing. Instead Father Christmas squeezes alongside the windowsill with my pottery cat. Everyone just has to budge up a bit now to make room for dementia. I know I can’t shop for presents like I used to, that the crowds and people would make me panic. And yet I do remember that it was the very same thing that used to draw me before, the chance to watch people’s eyes come alive at an exciting find in the shops, to picture the thrill on the face of the loved one they’d chosen to open it. Now if I want to soak up the festive season I pick my moments more carefully. I can look around the shops, but the best times are early morning, or at school pick-ups, when I won’t be jostled between tills and aisles by shoppers desperate to get home. And I know that people get sick of all the films repeated on telly over the festive season, but I love to watch them all over again. It’s never too taxing trying to keep up, as there is still something familiar.
Christmas used to be a sociable time, but the me now prefers to seek out quieter moments. Billy and I can often be found upstairs in Gemma’s loft room, just sitting quietly, taking a break from the TV or the clattering of pans or the friends and family that drop by. People can be offended if you don’t want to join in, but big occasions can feel overwhelming for someone with dementia, so it helps to have time to be able to duck out when we need to, and be a part of things when we want to. One woman with dementia told me at a group once how she loved to make Christmas dinner every year.
‘Now I’m not even allowed in the kitchen,’ she said.<
br />
Her family thought it was simply too dangerous, that they were keeping her safe. After all, who doesn’t want to put their feet up on Christmas Day? But they were persuaded that letting her stir something in a saucepan would make her feel less redundant.
‘I had a wonderful Christmas,’ she told me in January, her eyes twinkling at the memory of it, faded at the edges, but still there.
‘Well, you can’t burn the house down with a wooden spoon, can you?’ I say. ‘Although it does mean you won’t get a load of strapping firemen coming to save you!’
We both giggled like schoolgirls.
It’s worth remembering, before another year is out, that even as our memories fade, it’s not to late for new ones to be made.
How many times in our day do we take a moment to stop? We spend our lives hurrying from one place to another, between chores, or people, work and home. We feel guilty for doing nothing. Until we come to a moment in our life when something forces us to stand completely still. For me, it was that roadblock inside my head, the one that suddenly made well-worn paths become blind turns. A simple task like stepping into the shower becomes fraught with uncertainty. Two taps become literally a burning question: which one is cold? I have put red and blue stickers on them now to remind me.
There was something else the other day. I put shampoo on to my hair then rubbed it in with my hands, my fingers wriggling inside the stickiness of it, but something didn’t feel right. I’d looked down to my feet, but there was no water rushing down the drain, no suds being washed away. I’d forgotten to turn the water on or wet my hair first. There wasn’t shame – there was no one to see – just sadness. How had it come to this? Things I’ve been doing automatically now require so much thought and concentration, reminders even. We understand when babies take their first steps or learn to feed themselves just how many actions and thought processes it requires. It’s the same with dementia, but in reverse. Those messages aren’t being sent and received like they used to be. They’re slow or they’re gone altogether.
Somebody I Used to Know Page 17