As the morning wears on, the room fills up with other faces, all of them older than mine, a blankness and emptiness so apparent in their eyes, a faraway look already settling into their faces, filling the lines once made by laughter. Most of them are in couples, one wrinkly hand on top of another; some are with their children. I feel like I have been waiting a long time. I pick up the same magazine I had read a few weeks before, flicking through it again, cover to cover, reading the words, yet nothing going in.
I stare at the door, filling in the gaps of what might be happening beyond it. The neurologist will be assuring Sarah that I didn’t want her to stay with me and be my carer, that actually it will be easier for me to live alone, that there will be less confusion, less chance of things being moved around.
Finally, there is a sound, a turn of the handle, thanks and goodbyes, the lightness of my girls’ voices. I look up and scan their faces – no eyes red from tears – so the smile I greet them with is genuine, relieved. They smile their lovely smiles back at me, as if to say ‘time to go home’. We leave the hospital, the mood much lighter as they chat about this and that, nothing of what had occurred behind closed doors. Maybe, like me, they need time for it to sink in too.
My strength returns in the cheeriness of their voices; it takes me immediately back to the roles I prefer, the ones we’ve honed so well over the years, when I am the mum who protects and shields them from all things bad. As we walk home, there are still things I can do to make life easier for them, to protect them in some small way. There will be a way of getting back some control. There’s always a way.
Orange and lemon drizzle cakes were always the favourites. You knew the recipe off by heart: butter, flour, milk, sugar, eggs and lemon zest; you never needed to look it up. I remember the smell of your kitchen, the sweetness of a new sponge pulled fresh from the oven, the holes you’d stab into it, and the sticky lemon and orange syrup you’d drizzle into each one. The girls would stand waiting patiently, their eyes ready to eat, their noses touching the top of the kitchen worktop. ‘It needs time to cool,’ you’d tell them, and they’d go and play, running back downstairs when they heard the sound of the door, your friend arriving signalling the cutting of the first slice. You’d carefully carve pieces off it to put in their packed lunches; they always told you their friends were envious of their homemade cakes, which made you smile.
Every weekend or school holiday was an excuse for an afternoon of baking. You’d make miniature cupcakes – tiny buns for tiny hands – some iced with funny faces in different colours, Smarties for eyes and a red icing smile drawn with a steady grip. Some you’d top with marshmallows and edible pink glitter, or strawberry shoelaces snaked into an S for Sarah or a G for Gemma, and others topped with a mini cola bottle standing to attention, secured by a blob of icing. On other occasions, if time allowed, you’d lay out all the toppings and tiny squirty tubes of icing and the girls would create their own masterpieces, their faces full of concentration and pride at the final result.
You’d set them up outside in the garden on a sunny afternoon, Gemma on her plastic red chair that matched the miniature table, Sarah on a little wooden chair you’d painted yellow, and serve them afternoon tea on colourful paper plates you’d saved from parties. Less washing-up. They’d giggle as they tucked in and blobs of icing stuck to their noses.
A simple treat that made two little girls so happy, and all that love folded into the mixture.
The cookery book lies open on the worktop, well-thumbed pages speckled with stray ingredients. I quickly flick the page backwards and forwards and look into the bowl at the floury mixture that stares back. I lick a finger and dip it in – is that bicarbonate of soda? Or just flour? It’s impossible to tell. I try to retrace my steps in the recipe, flick back and forth on the pages, back and forth, before fishing another teaspoon from the drawer and dropping another few grams into the mixture and watching the tiny light white cloud curl up in return.
In the last few months I’ve been baking cakes for a homeless charity in York. I’d seen an advert in the newspaper looking for volunteers for their breakfast service and I’d emailed to ask if a cake might be appreciated. I have always loved baking, but since my diagnosis there has been a shift in my mind; there’s had to be. I’ve opened the wardrobe and seen the toes of my trainers lost under long hems at the back, and my car keys stayed in the red dish when I walked to the post office to send my driving licence back. So many compromises to make that I’ve wanted to – I’ve needed to – focus on what I still can do. Baking is something I can still do.
The first week I’d turned up, laden with Tupperware, the faces that gather at the shelter every Saturday morning eyed me and my two large Victoria sponges with suspicion.
‘Why would you bake cakes for us?’ one said.
‘Everyone deserves a nice treat, don’t they?’ I replied. ‘Anyway, I haven’t got anyone else to bake for; you can be my critics.’
I never wanted them to think I felt sorry for them, I knew only too well how that felt. I like it at the shelter; no one knows me there, so they don’t notice if a word abandons me mid-conversation, or if I forget someone’s name from one week to the next. They don’t know the old Wendy; they aren’t watching me as closely as those who have worked with me for years, who are perplexed by the difference. I can relax there. I don’t have to be on guard, disguising any slip-ups; these people are just grateful for my sweet offerings. I am known as the cake lady, a new identity I’ve carved from sugar and flour but one that suits me so much better than anything the doctors had written in my notes.
I turn back to my recipe and add in caster sugar.
The second week I’d arrived at the shelter, my arms full of chocolate cakes, I’d been presented with a dozen eggs by one of the homeless people, who’d spent his night sleeping in a barn.
‘Now you’ve got no excuse not to come back next week.’ He winked.
It feels nice to be useful, and I like the fact that they look forward to their cake on Saturday. I can’t serve up a slice without thinking of my own girls and how, if they ever fell on hard times, I hope someone would do something nice for them. I realised, too, that the shelter’s visitors didn’t just need something for Saturday morning, they needed something to take away with them as well, so I started making rock cakes that would slip easily inside their pockets.
I flick back one page and forward again, I wrinkle my nose, then tip caster sugar into the bowl.
Some of them take being my critics very seriously indeed, giving me a detailed critique of my cake from one week to the next. Once a couple of new people turned up at the shelter and moaned that they didn’t like what I’d baked that week, but the others had soon leapt to my defence. By then we’d built up a friendship.
I stop and scratch my head. Have I added caster sugar yet? I can’t remember doing it. I look down into the bowl and see the granules so, relieved, I start mixing, but the spoon doesn’t glide through the mixture like it usually does, it feels thicker, heavier. I tell myself I’ll soon loosen it up, and work the spoon harder, which in turn makes my elbow ache. I pour the mixture into a loaf tin, but it clings to the side of the bowl instead of sliding off it. Odd, I think. I make a cup of tea while the cake is in the oven, but there’s worry whittling away inside me. I keep casting a glance at the oven, getting up more than usual to peer through the glass door to see if it’s rising.
At the shelter I often sit and have a cup of tea with the people who file in for something to eat on a Saturday morning. It is hard sometimes, listening to their stories, how their own families have deserted them and so in turn they have made family in each other. Being with them is grounding, however tough my week has been, however deep the pile of Post-it notes has grown on my carpet overnight, the meetings when I’ve felt suspicious eyes on me or heard the long sighs down the telephone receiver because I’m not grasping the problem quickly enough. And there’s the fear I now wake and breathe and live with – the emptiness of what�
��s to come. None of that exists at the shelter on Saturday mornings; there I’m reminded to be grateful for the things I still do have: a roof over my head, money to pay the bills, a shower and clean clothes to wear, two daughters who care so much.
Life can be cruel at times; it can steal so much in one hand that sometimes we just have to cling on to what it leaves behind, however small an offering. Sitting amongst these people whose world has deserted them often makes me think of all the plans you make when life is good. These people sitting around enjoying my cakes, taking care not to drop too many crumbs, must also have made plans like that during better moments in their lives. They too once had a home, a family, a job, yet here they are, relying on others for food and shelter, if only for a few hours. Given the hand that life had dealt them, they’d found tiny ways to make their lives better: the sleight of hand that pockets anything that can be saved for later, the compact way they stored their possessions, making it easier to carry their worldly goods from one doorway to another. They’d sought out help, giving support to one another. Often the older ones looked out for the younger ones, who might not have parents to fall back on. We all find ways of coping when we’re ready to start searching for them.
I glance at the clock and it’s time to get the loaf out of the oven, but in the kitchen there’s a strange smell, something different. I pull it carefully from the shelf and pat it with my oven gloves; it hasn’t risen and it looks hard and stodgy. I turn it out on a cooling tray, but it doesn’t look right and I can’t work out why. I wait twenty minutes, and then slice off the end, but the knife sticks through it, the sponge doesn’t spring back happily as it usually does; inside it’s dense and compacted, a heaviness where air usually is. I try a corner but wrinkle up my face. It’s inedible. Too sweet, too much sugar. It goes straight into the bin. I look at the other Tupperware neatly stacked on my worktop and realise with a sinking feeling that there’s not enough, that someone will have to go without this week.
I stare at the cake in the bin. It isn’t the first time this has happened. The rock cakes had too much salt last week. Another Victoria sponge had gone in the bin the week before. I know why. It’s because I can’t follow the recipe. I used to store it all in my head and now I follow it from the book, but I turn the page and poof, it’s gone. Last week I mixed up teaspoons and tablespoons. The week before it had been double flour. Sadness wells inside and with it a frustration and anger that has been building for weeks. I look at the cake, broken and useless inside the bin. I have heard nothing from any doctor since my diagnosis three months ago, nothing but one appointment at the memory clinic, and that is still weeks away. How can I help my daughters understand my diagnosis if I can’t understand it myself? That’s what I feel angry about. That’s why I feel broken and abandoned, discarded by an NHS that I have worked in for twenty years. Surely I, more than anyone, know how the system works. I am the system; I manage the system. And yet the system has abandoned me.
I close the bin. I don’t want to look at that cake any more. I know I won’t go back to the shelter. I don’t want to explain why I keep getting it wrong; better to slip off radar, however much the guilt and sadness sting. I feel empty inside. Yes, the emptiness for the insights I’ll no longer be privy to at the shelter, the way I’ve found the people who visit there so inspiring, but more than anything, a real, visceral grief at saying another goodbye, this time to baking, something I’ve done my whole life. From baking the first fairy cakes as a child to teaching my girls how to do the same, it’s always been there, a constant. There wasn’t a gloomy day that a bit of baking couldn’t cheer. I stare at the long line of cookery books in the kitchen, those with pages that are wrinkled and bent, others clean and bright, and yet I know now I’ll never get round to using them. Another goodbye, this time to something so sweet. But I think of those people at the shelter, how the things they’ve lost would make mine pale by comparison. And yet they found a way to make life that bit easier by seeking out help.
I go to my filing cabinet and pull out all the medical letters I can find, all the correspondence that has dropped into my hand or through my letterbox since my diagnosis. I find the names and telephone numbers of those who should have contacted me and of those organisations that might be able to unravel this mystery inside my brain. I rattle off emails asking for, even demanding help. Not just for me, but so I can help my daughters. I need to understand what Alzheimer’s is and what it means for me.
It’s Saturday morning and three blank documents sit staring at me from the yellow-and-white-checked tablecloth. I see some pencil marks I’ve made on my copy, and feel my fingers twist the tea towel in my hands. This is going to be hard. I turn my attention instead back to the kitchen worktop, the tiny buns I’ve recently pulled from the oven, and take deep, sweet breaths of the scent that fills that room. It’s almost all ready: miniature lemon drizzle cakes, teeny Victoria sponges, each one a favourite of the girls. There are tiny sandwiches too, and very carefully I cut the crusts off each one, and lay them beside the mini quiches. I then search the back of my cupboards for some edible glitter, sprinkling some on each perfect little cake before arranging them on the cake stand. The documents watch me from the table, and I swallow down the pain that I’m trying to disguise with shimmering dust. I spy the glass cabinet, and inside my white and gold-rimmed tea service adorned with pretty pink roses and daisies. I lay the table, three cups on three saucers, matching plates and milk jug. I even fill a bowl with sugar cubes, placing the silver tongs on top, despite the fact that none of us even take sugar in our tea.
I stand back and look at the table, very proud of my efforts and the way the tea has turned out. But I also know that we may not be in the mood to eat any of it, that all of this may have been for nothing, although it’s the only way I have of sweetening this bitter moment. Today Gemma and Sarah are on their way round to help me write my lasting power of attorney document – in effect, what my wishes are when I’m no longer able to articulate them. I think of some of the questions that I’ve already written in pencil, and fight that feeling inside that so desperately wants to protect my girls from having to do this.
A moment later, I hear the sound of car doors outside, the click of the garden gate signalling their arrival.
‘Mmmm, something smells good,’ Sarah says as they come through the door. Amidst the hugs and kisses, I see them glance at the paperwork waiting on the table.
‘Let’s get the boring bit out of the way, then we can get on with the serious business of afternoon tea,’ I say, trying to lighten their nervousness. Or is that mine?
I suggest we start with the section on finance. It’s fairly straightforward and I’m glad of the pencil comments I’ve already made and the silence it fills explaining them. We move on to the health section next. Their heads are bowed now. I spot the glances to one another for reassurance every so often. I clear my throat.
‘Question six – restrictions about health and welfare,’ I say. Noticing the subtle but sharp intake of breath from both, I put the paperwork down. ‘I don’t want to be resuscitated.’
There is a moment’s silence. ‘I can understand that,’ Gemma says.
Sarah is silent. I can see the aspiring nurse is struggling, that she knows this goes against everything she is training for, that life must be fought for. But not mine. Not this life.
‘What are you thinking, Sarah?’
There’s a pause. ‘But what if you might pull through?’ she says. ‘What if you just required antibiotics to recover?’
I sense the desperation in her voice and for a second I’m blindsided. I shouldn’t be here, shouldn’t be explaining to my girls why I wouldn’t want to stay in the world with them.
‘But if Mum had already lost capacity and we were making those decisions for her, she wouldn’t want to survive and continue to deteriorate with dementia in control,’ Gemma says gently. ‘She wouldn’t want to get better and live in the dementia world.’
I smile, feeling the br
eath I’ve been holding on to leave me.
‘Good job we’re talking now, otherwise you’d be falling out and arguing over decisions when I couldn’t help put things right,’ I say with a smile, trying in some way to brighten the mood.
Sarah nods, an internal reminder that we’re here to talk about my wishes. It’s done. That emotional decision filed away, done and dusted until a time when it’s needed. A time I hope will be a long way in the future, but who knows?
I turn back to the document, my finger scans down the page, and a knot pulls tight inside my stomach, indicating where I need to stop.
‘I’m sure we’ve spoken of this before, but this is what I’ve written in pencil: “If I no longer have the mental capacity to choose my place of residence or become unsafe at home, my attorneys have my approval to choose a suitable residential home …”’ I pause. Both of them are looking at their laps. ‘I never want you to be my carers. You’re my daughters and always will be.’
‘Yes, we know, Mum,’ Sarah says softly. ‘If you’re sure …’
I pick up a pen and go over the words in ink, but even as I do, something doesn’t feel right, because I know this isn’t what I want, to end up in a home, but it’ll have to do for now. It’s better than the thought of my girls giving up their lives to care for me.
Even the room seems to sigh with relief once it’s over, everything signed and dated, boxes ticked, the final legalities read out. The three of us sit there for a while, a time that feels like minutes, but is perhaps only seconds, the red clock on the wall keeping pace with our thoughts.
I break the silence. ‘Let’s open the door – it’s become very warm in here. And who’s going to help me lay out tea?’
Somebody I Used to Know Page 5
