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Chapter 5

I picked my mum up from the café, where she was reading poetry out loud to Edie May, staying only long enough to give everyone a quick update on the House on the Hill, and eat some cake. I’m busy, but there’s always time for cake. I was peppered with so many questions I could barely spoon my Black Forest Gateau in. I kept it mysterious, just for fun – I rarely know more than the ladies at the café do, so I enjoy my brief moment of power.

After that brief and calorific restorative, we came home for our tea. My mum, Lynnie, is lying on the sofa, with her latest notepad creation spread in front of her. She goes to a day centre twice a week, and they helped her make her new cover.

Not everyone takes to this kind of thing but it was practically invented for her. She was always one of those women who could whip up a fancy dress outfit for school from an old curtain, a roll of tin foil and some paperclips.

The first page is, as always, taken up with the practical information that helps her get through the challenges of her day. The rest will, bit by bit, become filled with memories, thoughts, and notes. I try to respect her privacy, but I do occasionally crack and sneak a peek – usually if she’s been particularly agitated or too quiet, both of which are signs that something is wrong and she either doesn’t feel comfortable talking to me about the problem, or simply can’t quite find the words to explain herself.

The cover of this one is decorated with the glued-on petals of pressed flowers she’s been squashing between the pages of her weird hardback books about stone circles for days now. It’s a bright collage of cow parsley, bluebell, foxglove, wood sorrel and the beautiful pale yellow trumpets of wild daffodil. It’s like spring time has come alive on the page, and I almost expect butterflies to fly out from the folds.

She’s shielding the pages as she writes, and glancing up at me every now and then, looking slightly suspicious. One of the many joys of Alzheimer’s is that it can be so unpredictable. Some days, she’s pretty much like her old self – bouncing around with loads of energy, burning incense in the garden, telling me off for using toxic chemicals on my hair. She doesn’t mind the nose ring I sometimes wear, or the Celtic tattoos I have on my arms, but the thought of the hair dye really bugs her.

I relish those days. I love getting told off by my mum, which are words I never thought I’d hear myself say when I was a teenager. But getting told off by her means she knows exactly who I am, and who she is, and what our roles are.

Other times, it’s not so simple. It’s not always like in the movies, where she has no clue who I am – well, it is sometimes. Like when she hits me with a frying pan and tells the police I’m a burglar. But that’s relatively rare, and I can usually spot the build-up in the days before one of those episodes. A lot of the time, it’s somewhere in between – she knows she feels safe with me, and that I’m important, but isn’t 100 percent sure why.

Those days are hard on her – and on me. I can almost see her poor brain struggling to make the connection, fighting against its degeneration to put all the clues together. She seems embarrassed by it – as though she knows she’s missing something big, and it makes her feel helpless and useless and … well, just ‘less’ in general.

That’s one of the reasons the notebooks are useful. When I see her doubts, see the way she’s trying to hide her uncertainty, I can open that front page, and point to it, and watch as she reads it through. There’s always a moment when it clicks into place, when her face breaks out into a joyful smile that makes me want to weep – the moment she remembers. When she knows she is here with me, her daughter, who loves her, and who she loves in return.

Tonight, I can tell she’s not completely sure of herself. I still have an egg-shaped reminder of the frying pan incident, and am not keen to repeat it, so I quietly sit down on the chair opposite her, and casually say: ‘That’s a really beautiful notebook. Did you make that at the day centre?’

‘I did – with my friend Carole,’ she replies politely, moving fluidly into an upright position on the couch, holding the book on her knees. She’s very slim, my mum, with long, lean limbs that are still sinewy from years of yoga and exercise. Even though her hair is striped different shades of grey, it’s still thick and curly, and frames what is even now a very pretty face. She’s sixty-five, but has the kind of looks it’s hard to date – she could be anywhere between forty-five and seventy-five, depending on the light and her mood.

‘Carole’s really nice,’ I say in return. It helps if we build up gradually as we talk. ‘When I dropped you off at the centre yesterday, she was waiting outside for you, wasn’t she? I think maybe she’s had her hair done.’

‘She has! You’re right. She’s gone blonder. Do you know Carole too?’

‘I do, yes. We’re all friends. I’m glad she helped you do that new book. Did she help you fill in the first page as well? Why don’t you have a look at it?’

I can tell she’s thinking I’m a bit doo-lally – this is a common and ironic occurrence – but she indulges me, and reads over the front page.

I see her take in the words, and look at the pictures, and cast surreptitious glances across at me. I see the moment she joins the dots, and the moment when she hides the fact that she was ever confused in the first place. Like I say, she gets embarrassed, as though her problems are a sign of weakness rather than because the nerve cells in her brain are refusing to cooperate any more.

I let her believe she’s fooled me, that everything is fine – because why wouldn’t I? She doesn’t have many places to seek refuge any more. This illness is laying her bare, bit by bit, and if she finds it consoling to sometimes pretend it’s not happening, then I’m not going to be the voice of doom.

Sometimes I have to be firm – like when she decides she’s going to book a place on a yoga retreat in Nepal, or take a road trip to visit the parents she sometimes forgets are dead – but not tonight. Not right now.

‘Guess what I did today, while you were at the café?’ I say brightly, hoping to distract her from her burgeoning self-loathing.

‘I have no idea,’ she replies, crossing her legs easily into lotus, and giving me one of her glorious smiles. ‘What did you do today?’

‘I went to the House on the Hill to do some work. Do you remember it – Briarwood? Mr and Mrs Featherbottom? All the children who used to live there?’

‘Of course I remember it!’ she replies, sounding astounded that I would even question such a thing. ‘I was there over the summer last year, wasn’t I? Holding those workshops? So many precious young people, all needing so much love …’

In fact, it’s been well over a decade since she worked there – but it’s not uncommon for her timeline to get a bit mixed up. It’s like she’s living in an especially complicated episode of Quantum Leap. I know she remembers Briarwood, and remembers it fondly, because it’s one of the places on her Wanderlust List. Every now and then, she goes walkabout, often after being agitated in the late afternoon. Usually she’ll take an unplanned and unaccompanied trip back in time.

She’ll walk to the café on the clifftops, or to the Community Centre in the village, and sometimes even persuade people that they need to take part in a yoga class. I once found her in the café, putting Laura in a downward dog over breakfast. She’s tried to make it to Briarwood a few times, but as it’s quite a way off and up that big hill, she usually either gets spotted and someone calls me, or gives up and comes home, covered in mud or scratches from hedgerows. So far, no harm has come from any of this – but it is always terrifying, the realisation that she’s gone.

It leaves me wracked with guilt as well, even though logically I know that I can’t watch her twenty-four hours a day – I need sleep, and rest, or I won’t be able to function at all.

‘I think,’ I reply, gently, ‘that it might have been a bit longer ago than that, Mum. But it doesn’t matter – anyway, someone has bought the house. One of the boys who used to live there.’

‘Really?’ she asks, frowning in confusion. ‘Have Mr and Mrs Featherbottom left, then? They worked so hard, those two … but it’s a lot to ask isn’t it, looking after so many damaged children? I do what I can to help them, but there are some you can never quite reach.’

‘I’m sure you helped a lot of them, Mum. This one certainly remembers you as being really nice to him. He’s called Tom, and he’s an inventor.’

‘Oooh! How exciting! What did he invent?’

She claps her hands together as she says this, delighted at the very thought.

‘Umm … I’m not quite sure what it’s called,’ I reply, honestly. ‘Something to do with industry, and making things. Ball bearings, I think.’

‘Shall we call it a flange bracket?’ she says, her eyes twinkling mischievously. For a moment, she’s back to being my brilliant, whacky, never-at-all-boring mother – the mother who made up stories for us at bedtime instead of reading them, and who always had an alternative word to hand. Cornflakes were crack-of-dawn-flakes; pyjamas were llamas; cuddles were muddles. There were so many of them – it was as though she had her own form of rhyming slang, or a type of Edward Lear-style nonsense language.

‘Yes!’ I say enthusiastically. ‘I think that’s the perfect word for whatever it is. He invented a flange bracket, and made a lot of money from it, and now he’s bought Briarwood.’

She’s silent for a moment, stroking the pressed flower petals on the front of her notebook. She looks up at me, and asks: ‘Are you going there tomorrow? Or to the café?’

‘Possibly both. You can go and see Carole again, if you like.’

I never force her to go to the day centre – her life choices are narrowing rapidly now, so I try to give her as many as I can. There’s funding for two days a week there, but she doesn’t always use them. We work around it. There’s a local agency that provides carers, and a lady called Katie who moved to the village a while ago sometimes comes and sits with her.

Katie used to be a nurse, and is now a single mum to her almost-three-year-old, Saul – she doesn’t want to go back to work yet, but helping me and Mum out keeps her busy. The added bonus is that Mum adores Saul and he thinks she’s some magical witch, so it works well. Other times, she comes with me, depending on what I’m up to.

She’s turning it over in her mind, and I hope she chooses Carole. It’s late to ask Katie for help, and having seen the state of Briarwood, I’m not sure it would do her any good at all. It was weird enough for me, even though I’m aware of the passage of time. If she arrives there thinking it’s the summer of 2006 or something, she’ll be completely freaked out by it its ruined condition.

‘Yes,’ she says finally. ‘Carole. But maybe one day, you can take me to the House on the Hill again? I’d like to meet the famous inventor of the flange bracket.’

‘You will, I promise,’ I say, yawning halfway through the words. ‘He’s really nice.’

Mum stands up and stretches, long and tall. She yawns too, and I realise we are both exhausted.

‘Time to turn in?’ I ask, raising my eyebrows. She nods, and comes over to give me a cuddle – or a muddle, depending on your word choice. I sink into her arms, and let my head loll on her shoulder, and close my eyes.

Just for a minute, I let myself forget – forget the real world, and all its problems. Forget that I am the carer and she is the one in need of care. I forget everything, and just allow myself to feel like a little girl, safe and content in her mum’s arms at the end of a busy day.

‘Love you, Pillow,’ she says, dropping a kiss on my head and leaving the room. Pillow. That wasn’t one of her nicknames for me – it’s just one of the words that seem to have got messed up on the way from her brain to her mouth. She’s probably thinking about bed, so that makes sense.

‘Love you, Mum,’ I reply as she pads off to her room at the end of the corridor. ‘Sleep well.’

I stay in the chair for a few minutes – it is super squishy and comfy – and let my mind wander. I make a little check-list of all the things I have yet to do, before forcing myself to my feet to actually do them. If I sit for even a minute longer, I’ll actually fall asleep. I’ll wake up at 4 a.m. with some bonkers infomercial for ab-crunching exercise machines on the TV, my hair glued to my cheeks and my eyes stuck together with gunk.

Sighing, I push myself upright, and start my usual Bedtime Patrol. I switch off the TV, and have a very perfunctory tidy-up, mainly picking anything from the floor up and putting it away. Removing trip hazards has become a way of life, as much for me when I’m walking round half-asleep as anything.

I check the windows are locked with the little keys, which I keep in my room with me. Same with the front door, and the back door. It feels weird – as though I’m keeping my mum a prisoner – but I just can’t rest if I think she’s going to sneak out. I mean, she does anyway sometimes – she’ll remember where I keep them and find a way to get them in the night. Mostly she doesn’t, but I feel better if they’re close to hand. I should probably invent a flange bracket that keeps them safer.

I go into the kitchen, my favourite place in the house, to get ready for the morning. It’s a big room, with an old stone-flagged floor that’s been worn shiny by generations’ worth of feet traipsing across it. The ceiling is a bit on the low side, and beamed, but I know it’s high enough to avoid me banging my head unless I’m on a pogo-stick or wearing stilettos – neither of which I am often doing.

The sink is a massive, ancient Belfast affair, and the surfaces are all made of thick old slabs of pine. It’s a kitchen that’s been well-used and well-loved, for a long time.

Outside, through the window with its blue gingham curtains, I can’t see much now – it might have been a beautiful day, but it’s still only spring, and it’s already dark out there in the wilds.

In the daylight, though, it’s a beautiful view. Our cottage is on the edge of Frank’s farm, and all you can see beyond our garden is fields, stretching for miles in myriad shades of green. Our own garden used to be spectacular – Mum was a dab hand – but now we try and keep it simple.

She still has her vegetable patch, but is hit and miss with how much interest she has in it. Frank often comes round to tend to it himself, pretending he does it purely for the fresh fruit and veg we pay him with. I know that’s not true – Frank has a whole farm to himself. I know it’s just a kindness and I accept it, gratefully. I like to be as independent as I can, but weeding when you don’t need to is taking independence too far.

There’s a bench and a table and a couple of old chairs out there, positioned so you can watch the sunset over the hills, and even a scarecrow that has been there longer than we have. He’s called Wurzel, and when we were kids we used to dress him up for the different seasons – a Santa hat at Christmas, monster mask at Halloween, that kind of thing. I remind myself to find something gorgeous and spring-like for him to wear very soon. Maybe a daffodil-shaped hat, or a jaunty Easter bonnet.

I get everything ready for the next day. I place two bowls, two spoons, and a big tub of Laura’s home-made granola on the table, along with two mugs. Too many questions can confuse Mum first thing in the morning, not to mention myself, so I try to plan ahead and keep it simple for both of us.

I make sure the ‘Monday’ section of her pill box is empty, and check that everything is stocked and ready to go for Tuesday – she doesn’t always like to take her medication, but as they’ve yet to find a way to alleviate Alzheimer’s through a nice ginger tea and a nettle poultice (her traditional approach to healing), it’s a small battle we have to face regularly. Some days she’s absolutely fine about it – others, for some reason, she’s not. She’ll hide them, or even hold them in her mouth and pretend she’s swallowed. Those are fun times.

I wipe down the counters, and change the sheet on the page-a-day calendar. It’s huge, and plainly printed black-on-white, and the alleged idea is to provide a simple reminder of what date it is without having to try too hard. Of course, that depends on me remembering to tear the old pages off.

I check the dryer, and fold out a load of laundry into the basket. Mum will get up and usually comes through into the kitchen in her llamas, at which point I’ll sneak into her room and lay out some clothes, in the order she needs to put them on – knick-knacks and bra, then socks, and whatever else she’s wearing.

She doesn’t always take notice, and emerges wearing something completely different instead – and who can blame her? It’s every woman’s right to choose a fuchsia feather boa and hounds-tooth tweed jacket combo if she wants to. As long as it’s weather-appropriate and covers her modesty, I don’t really care. Nobody would ever accuse me of making conservative choices on the wardrobe front, that’s for sure.

Once I’ve sorted the clothes, I make sure Bella’s water bowl is full, and tucked under the table where it’s out of the way. She watches me from the corner of the room, tail twitching, knowing the bedtime ritual by now. I switch off most of the lights, leaving small plug-in night-lights on just in case Mum gets up while I’m asleep.

Bella follows me to the back door, where I stand and wait while she does her night-time business, before locking up again and going to attend to my own. By the time I’ve brushed my teeth and changed into a pair of mis-matched llamas, I’m ready to fall asleep standing up. I am pathetically grateful for the fact that our cottage is all on one level, and I don’t have to face stairs. I wouldn’t make it without a Sherpa.

I fall onto the bed, pausing for a second to enjoy the silence, the peace, and the feel of all my things around me, before scuttling under the duvet. My pillowcase smells of lavender, which means Mum has been housekeeping – and sure enough, I find a dried sprig tucked inside it. I smile, and put it back. Every now and then she does that, or leaves fresh wildflowers in my room, or writes me a rude limerick and pins it to my headboard. She is still, even in this constantly changing version of herself, really rather brilliant.

I glance at the clock on the nightstand, and let out a self-mocking snort. Willow Longville. Party animal. Completely exhausted and already tucked up in bed – at 8.38 p.m.

Bella waits until I’m settled, then leaps nimbly up onto the bed. She circles several times, then curls up in a ball right next to my head, as though she’s a human claiming the other pillow.

I let my hand rest on the warm fur of her back, and feel the comforting rise and fall of her breath. I wonder if she’ll dream about Rick Grimes. And I wonder if I’ll dream about Tom Mulligan, the famous inventor of the even-more famous flange bracket.

I may fall asleep pathetically early, but I do at least fall asleep with a smile on my lips.