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When her mother began to lose her keen interest in the world around her, Sally Magnusson fought to keep her tied to reality. But as dementia took hold, nothing could stop her slipping away

“Things I Love About You”, I write, thinking about you in the sturdy old family house three miles along the road where I have just tucked you into bed. It is dark outside. On the wall in front of my desk it is summertime. There is a photo of you in your most vibrantly pink jacket, arm flung around my father’s shoulder with the eye-dancing smile you have not lost. It was taken on your 50th wedding anniversary. The rest of us are clustered around you both in the sunshine – four children, nine grandchildren, your twin sister, Anna – all grinning madly.

Memories go, as you know better than anyone, and there are some I badly want to hold fast. I want to remember everything about you. I tap late into the night, eager to round up your slippery self. I have to catch you now, as if by the time I see you again tomorrow it may all have changed. If I can only trap you in words, corral you within a list, then perhaps I can hold you beside me here for ever, the mother who clapped her hands to see the snow at night, who has lost so much of her self but not yet, not yet, the thrill of being alive. So I write my list. And somehow it happens that I find myself talking to you.

Your enthusiasm for sliding down banisters. “That’s how I’d like to go down these stairs,” you murmured the other day, eyeing the one outside your bedroom with intent. “You’re 83, Mum,” I said. “You broke your hip four weeks ago.” You looked at it longingly all the same. I like to imagine that same gleam in your eye just before you vaulted a dustbin on Buchanan Street on the way to your first interview with the Sunday Post. “For goodness sake, Mamie,” your mother had sighed when you landed, “try and act like a lady.”

The way you peer into the mirror, push your fingers through your hair and sculpt it forward into a wave. Strong hair, white with a few fugitive threads of black; hair that has always scorned a curler. Your eyes. Brown, and still shining more often than I dared hope when I first realised the journey we were on. Your wit. It keeps surprising us. Even in your foggiest moments, it flashes through just often enough to remind us how sharp you were, how you used to make audiences cry with laughter. The way you stroke my hair when I’m kneeling to take off your socks. You do it almost apologetically, as if to say, “You shouldn’t be doing this.” But you’ve no idea how to do it yourself. Not the faintest idea how to start. The tenderness more than makes up for your having lately introduced me to my sister with the words, “Now, do you two know each other?”

Things I observe with dread: empty eyes. Grim mouth. Vacant expression. Stony face. Aggressive sniping at the twin sister whose mind has remained lively while yours has not. This is the worst thing, the very worst thing, of all.

Dementia is one of the biggest healthcare challenges on the planet. There are thought to be 35.6 million people with it across the world with an extra 7.7 million cases predicted every year. There are some 800,000 in the UK. More than half of those with dementia are in developing countries, a number expected to rise to 71% by 2050. This is a disease that respects neither geography, ethnicity, class nor gender. You, my darling mother, are unique in all sorts of ways, but not in succumbing to this disease. Not by a long way.

Everyone notices the onset of dementia in a loved one differently: the discovery of house keys in the oven, the repeated disappearance of spectacles, an easy word lost. I don’t recall any house key incidents. What I was starting to notice as you reached your 70s was a mislaying not of spectacles but of curiosity. There was a subtle withdrawing of interest. This was baffling. All my life you had been dashing off something on the typewriter: freelance articles, ruminative columns, ideas for speeches, whole chapters of books you were content to see published under my father’s name, a couple of your own, letters to your far-flung brood. When one of your children died at the age of 11, it was words that saved you; some days, you barely put your pen down on the book you were working at, compulsively writing on and on to deaden the pain. Words were the air you breathed.

Words, from the age of 17, were what you did. James Cowper was your inspiration, one of those unassuming English teachers who quietly furnished the minds of working-class youngsters. At first, nobody knew whose exercise book he had picked up from the top of the pile, but you quickly realised it was yours. Mr Cowper kept reading until he got to a point where you had reached, as you put it, “a sort of crescendo in my description”. The audience was chuckling. Then he stopped. With a flick of the wrist he tossed the jotter in the air. “That, ladies and gentlemen, is writing,” he told the class.

This was the moment you realised what you wanted to do in life. You wanted to write for a living and you wanted to make people laugh. It was this decision that began to steer you in the direction of a young man from a very different world. My father, Magnus Magnusson, who went on to host the BBC quiz game Mastermind for 25 years, was younger than you, and much posher, but one day he, too, would realise – also in a kind of epiphany – that more than anything in the world he wanted to be a journalist. Meeting you in the cramped newspaper office would be what decided him.

“We had really fallen for each other,” you said. “Instantly. Just instantly. We were going about Edinburgh in a kind of dwam.” He accompanied you to the station to catch your train home. “I remember just as the train was moving out he leapt up and kissed me through the open window. It was wonderful. He was clean and nice, with lovely dry lips. That was my lasting impression of him.” You grinned as you recalled that moment. “I thought to myself, there and then, that this is the kind of person I would like to be with for ever.”

Why did I never talk to my father about what was happening to you? Around the time the change in you was becoming palpable, in your early 70s, he accepted an invitation to present a public service video about Alzheimer’s disease. “Interesting?” I asked. “Very,” he said. Neither of us brought up your name. I think we each hoped the other might not have noticed. Or perhaps we were too busy trying not to notice ourselves, believing that the longer we went without acknowledging it, the longer life would remain more or less normal. A conspiracy of willed ignorance.

He must have noticed you changing. No more hammering out a column on the typewriter. No more babysitting, not after the time you toppled backwards into a flowerpot in my garden and had to be rescued by one of the children you were supposed to be looking after. No more of so much that we all used to take for granted. Well, everyone slows down, don’t they, even a seventysomething as blithe of heart as you? So my siblings and I assured each other at first.

There was one incident that I now place beside the peculiar absence of curiosity as marking the beginning of the journey we have been on ever since. It was the summer of 1999. We were staying in a guesthouse on Mull. I was in bed in the room I was sharing with my daughter Anna Lisa, reading, when there was a knock at the door.

You were standing there wearing nothing but a short pyjama jacket and, thank goodness, a pair of knickers. You were laughing. You explained that you had got out of bed in your room up the stairs to go to the toilet along the corridor. Your bedroom door had slammed shut behind you, with the key inside. I snorted with laughter, too, and hustled you inside. Anna Lisa woke up and grinned sleepily at another of Grandma’s famous scrapes, destined no doubt for the family annals. Yet something felt odd about this latest escapade. Why were you not wearing your pyjama trousers in a strange house where you might meet the owners or another guest on your way?

You joined us in our room for the rest of the night and I thought little of it at the time beyond a twinge of… Well, what? The feeling tumbles away from me when I try to pin it down. There was just something about the blank look you gave me when I interrogated you about the absence of half your pyjamas that is now horribly familiar.

While never referring directly to what were clearly the symptoms of early dementia, my father did find a word for how you seemed. “Distraite,” he called it. In this he chose, as usual, well. It is from the Latin distrahere, to pull apart. In the episodes of distraction we were observing, it uncannily captures the loss of crucial connections in your brain. It felt to us at the time like a slippage of moorings. I imagined you as a small boat bobbing away inexorably towards the grey mist.

Two years, near enough. We had a golden two years between the ulcer that nearly killed my father in May 2004 and the cancer that actually did. Two years when your mind still more or less held together. A gentle enough time, in which my father voluntarily slowed down for the first time in his life and, to our astonishment, discovered how to relax. The pair of you would settle at a table in the central precinct and sip tea and coffee as the world wandered by. You were in your element at his side. He sat, chin cupped in his right hand, pipe and ashtray at the ready by his left, contemplating the passing scene.

This is how he is sitting the day I walk around the corner and am shaken by a gust of both happiness and loss as I catch sight of your group in the distance. From here I can see the tweedy deerstalker my father has taken to wearing in the chill breezes. You are next to him as usual, chic in the creamy woollen Icelandic coat he bought for you many moons ago on a trip to the homeland. You are leaning towards him, laughing. Even from this distance, I can see your head flung back, mouth wide with an uninhibited merriment that makes me want to laugh with you. I linger on my corner, drinking in the sight of my parents together, happy and, from a distance, whole. And yet I know. Of course I know. At the very moment the happiness bubbles into my throat, I know it is about to end.

It is 2009 when test results tell us you have “mixed dementia”. So now we know. You are heartbreakingly anxious to sort things out. As we sit in your living room one night after a day together, you remark thoughtfully, “Sally, I was thinking.” You are often thinking. You never stop thinking.

“You always seem to have been around. How did I first get to know you?”

“When I emerged from your womb more years ago than I care to think about.”

“Oh yes.” You gaze at me steadily from the armchair. “Of course.”

“That makes me your daughter, Mum, doesn’t it?”

Now you laugh. “Oh, I’m so daft. Of course you’re my daughter. I should have remembered that. It’s just that there have been so many wars in between.”

“Well, I’m not quite that old. I was born after the war you’re thinking of, the second world war. Quite a few years after, as a matter of fact.”

“Were you not in the war, then?”

“No, I wasn’t, but you were. Don’t you remember?”

“No. No, I don’t remember any of that at all.”

You are lying back in the bath, looking skeletal. The triangle of bone at your neck is so empty of skin that water has pooled in the cavern. I am soaping you with bubbles and trying to calm you down. You emphatically did not want to get into this bath and I know you won’t want to get out either. You are upset and frightened by the transition from towel to water, this awful feeling of vulnerability. I start to hum It’s A Lovely Day Tomorrow, and in a slightly quavery voice, you join in. “Just forget your sorrows and learn to say,” we warble together, “tomorrow is a lovely day.” You relax. The tension drains from your face. You shut your eyes. You let the water lap around your chin. You begin to smile. It really is a little bit like magic.

Back home, I am so permanently tight with exhaustion and low on patience that I suspect the kids sometimes find it harder than they let on. No time to stop, never a chance to clear my mind. I am losing my grasp of a swaying stack of priorities: the children, the husband, the broadcasting, the mother whose needs dominate my week, the sisters who are left with more to do if I don’t play my part, the brother, grieving for his wife, whom I too rarely see, the friends who never hear from me. “Do you realise what you girls have done with your mother?” my husband says to comfort me. “You’ve kept her part of the family and anchored to her children and grandchildren. You’ve kept her tethered to reality, even if the rope is lengthening.” A fine metaphor, I tell him. “I’m serious,” he says. “Any other way, and we would have lost her a long time ago.”

But this is not only a story about loss: yours of yourself and ours of you. As we lose you, we are also finding you. My sisters and I are more intimately engaged with you now than at any time since our infancy, when the traffic was the other way. We wash you and dress you, we tempt you to eat and to laugh, we scan your face for moods and listen to your conversation with eager concentration. We know you, better perhaps than we ever did, even as you know us less.

There have been times, usually amid the dark confusions of the night, when you have failed to recognise one or other of us, staring blankly with eyes wide. But there is a deeper kind of unknowing. I have been waiting for the moment you will fail not just to place me, but to know who I am. And now it seems the time has come.

On Christmas Eve I bounce into your house in a short, scarlet dress. Too much festive bonhomie? Too much makeup? I have no idea what triggers your response, but it floors me. I catch your look of panic right away. You glance across at my sister Margaret, sitting on the other side of the fire. She has been with you all day. “Who is this?” you ask her sharply. “It’s Sal,” Margaret says, sounding over-hearty, nervous for me, “your daughter Sally.”

I make to perch on the arm of your chair and lean over to kiss you. “Get off my chair.” You have turned on me your most basilisk stare. It is bad enough that your eyes hold neither recognition nor warmth, but I am shaken to see they are also dark with hostility.

“Mum, it’s me.”

“I don’t know you!” you shout. It really is a shout.

I stare at you, trying to gather my wits. I tell myself that I have been out of your company for two or three days, that you will probably know me tomorrow. But it is no good. There is another voice that won’t be silenced. My mother doesn’t love me, it says. Tears and mascara flow. When I bend to kiss you goodbye, you hiss, “Get your hands off me.” Driving home, I force myself to look steadily at the situation.

In order to bear this, I have to believe that you are not yourself, that there is a fundamental disjunction between the mother who believed she would love me while breath remained in her body and the mother who looked at me this evening with such intensity of loathing. So what am I saying – that you are you, except when it suits me to believe that you are not? You are you, unless I need at any given time to convince myself that the disease has turned you into a monster?

I have a sudden impulse to rush around the house waking up those five grown-up children of mine, all gathered under one roof for Christmas. I want them to know that what is in my own heart for them at this moment is me, the essence of me. Does this make any kind of sense, Mum? I am asking them to believe that if this disease should one day hunt me down, if it should ever cause me to stare into their eyes with the icy dislike I saw in yours, it comes from a diseased brain and not from the place I will call my soul, which is theirs for ever.

And thinking about what I feel for them, I understand you. This is the moment, in a cold house in the early hours of Christmas morning, that I realise it is the same for you. Whether or not I ever see another sign of it, you love me. Of course you do. Brain experts may shake their heads, but I don’t care. This is heart-sense. I have you safe in my possession. You are you.

It is April 2012. It is raining. The daffodils are cowering and even the tough little primroses clinging to the bank of the burn are drooping today. The smudged remains of Sunday’s Easter egg-rolling are being washed from the road. I walk fast. There is a pulse of anxiety behind every step. I cannot be away for long because you are dying. No more decisions. No more suffering that we can discern. We have all gathered to be around you, to sing you to ever longer sleeps and keep one hand in ours. You can no longer manage even the tiniest drip of water. You are still opening your eyes from time to time, still trying to speak, but your lips are moving soundlessly, because now, at last, there are no more words. There is a small, fierce triumph in all this. Dementia has not destroyed you. It has not won. It gives us a strange thrill that in the democracy of dying, you have become just like everyone else again. Whatever brings people to this place in their lives’ journeys – the sudden sickness or unexpected injury, the lingering decline – they come to it just as you have and lie just as you do now, immobile, sweetly breathing the allotted number of breaths that are left.

We spend the last evening but one sprawled all over your room in gales of laughter, reading out a stash of old letters. You lie there as we reminisce, small and still, impervious to everything. Your breathing is butterfly light; your face carved in bone, with deep, deep eye-sockets, all the softness gone from your cheeks; your hands limp in ours, their curl and clench gone. I become fixated on the collar of your pyjama jacket, which is standing up against your neck and fluttering softly with each breath. Your life in a flap of fabric. I move it aside to kiss you in the hollow of your neck, the small place where everything is still soft, even your hair there, and fill my nostrils with the smell of you. Your hair smells lovely, too. On your forehead the veins stand out blue like the tributaries of a river. Anna is holding your hand, here with you at the end as she was at the very beginning. You take a breath, a tiny, shivery gulp of a thing. Then the flap of flowery pyjama against your neck is still.

I slip to the window and open it wide. I’m not sure why, except that this is what people used to do in the days before anyone told them not to be silly, that souls don’t fly away. Your soul, that wonderful essence of you that dementia could not destroy, has always liked to fly.

• This is an edited extract from Where Memories Go: Why Dementia Changes Everything, by Sally Magnusson, published on 30 January by Two Roads at £16.99. To order a copy for £13.59, including UK mainland p&p, go to © 2014 Guardian News and Media Limited or its affiliated companies. All rights reserved. | Use of this content is subject to our Terms & Conditions | More Feeds

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