By Fran Cusworth - a parent's journey through dementia, and the challenge and privilege of caring for the people we love on that journey

Published Best Australian Essays 2013

 

Standing in the foyer of the aged-care centre, I hold a scrap of paper with six numbers on it. It’s the code to get through the door, and I stare at the keypad, momentarily confused. Why do I need a code to get out? It’s barely an hour since I dropped my four-year-old at childcare, where I needed a code to get in. But in this place, this home of the demented elderly, apparently there’s not a huge problem with people trying to break in. Nobody really wants to end up here.

I have just delivered my 77-year-old mother for a session of respite care. This is her first encounter with the institutions of old age; her first time to be cared for by a stranger since maybe her childhood. Was she ever cared for by strangers, in her Bondi Sydney youth, as the eldest of three pale, slender, dark-haired sisters? I don’t know. Either way, this is a historic day, in its small way, the beginning of an era. My father, who has today only yielded my mother reluctantly to his pushy youngest daughter, sees it maybe more accurately, and with some sadness, as the end of one.

My mother was born in 1933, when 30 per cent of Australians were out of work, doctors said cigarettes were healthy and an Australian home could be bought for under $6000. In her intermittent working life she has been a copywriter, a swimming teacher, and then a community volunteer for a wide range of causes. She was the wife of an engineer and a mother of three; a passionate reader, a frustrated writer. When her youngest child (myself) was six, and her eldest was seventeen, her middle child – then a boy of fifteen – developed schizophrenia, and the demands and small ongoing heartbreaks of that illness would dominate my mother’s life until her son’s death eighteen years later. It would dominate her psyche for many more.

She has been a carer of people, but now she needs others caring for her. In my trip this morning between the childcare centre and the aged-care centre, I feel a little ashamed at how much of my caring seems to involve putting people in institutions and promising to come back later. Ashamed, and yet relieved. I am the beneficiary of social change, the shift from the idea that unpaid women cared for needy family members, to one where care is what sociologist Michael Fine calls a public ‘social problem for which various solutions are sought.’ We’re not all the way there yet, and I feel the unseemly speed of the transformation so far, in my own discomfort.

What infants and old people in these institutions share is a thwarted desire to go home. My mother, when I left her, was pleading with me. ‘I’ll go with you,’ she said gently, over and over, each time as if the idea had newly occurred to her. She held her blue handbag in one hand, and my arm in her other. Her hands, long-fingered, knobbly-knuckled, and pale, are the mirror image of my own hands, although hers bear more fine lines. When I left my pre-schooler in his own door-coded institution a short drive away, he was moving a whale through a low sink of water. He said goodbye calmly, but a little girl, a new recruit, pressed her wet nose to the window and screamed as her suited, tearful mother ran to the car park. I cast some sympathetic vibes right now towards that woman, and I try very hard not to think about my own mother, who is probably the one making the door, in fact the whole flimsy wall, shake. Kind nurses will be trying to tempt her away, back to the ‘diversionary activities’ they offer.

When I did my own Judas-like sneaking out of the ward, Mum was seated on a couch, with a carer tossing a balloon to her. Other oldies made slow-motion attempts to catch the balloon, moving like astronauts on the moon. Carers applauded them. My mother, a once clever woman with a wicked sense of humour, simply stared at the balloon, in possibly justified disbelief, and when it gently touched her head, she recoiled as if assaulted with a cricket bat.

But it took time to break my little son into childcare, and I optimistically, ridiculously in hindsight, assume that my mother will be similarly trained up for respite care. You can see that at this stage, I am assuming we have her forever, or at least another twenty years. As it turns out, I am wrong, and she will be gone within a year. I don’t yet understand dementia can kill people – how could a mental illness result in physical death?

Of course there has been a journey to get to this point, leaving her shaking the wall in a respite centre, while I consider the business of getting out to the car park. Mum’s decline began, the official diagnosis says, eight years ago, although I suspect it was earlier. Possibly as early as fifteen years back, my literature-loving mother gave up reading. Then it became hard to interest her in new things, even the birth of my first baby. We were in the habit of leaving a bowl of dried food for our cat on the bathroom floor. One day, not long after the baby was born, I found Mum crouched over the bowl, eating cat biscuits with her fingers. Stunned, I asked what on earth she was doing. She said she thought they were sultanas, put there for her. It was testament to my absorption in the world of a new baby that I didn’t then realise something was wrong.

Talk to anyone over fifty about dementia, and you can see their eyes momentarily glaze over as they turn inwards and touch their own fears. My mother was no different. ‘Kill me if I ever get dementia,’ she would say, like so many of us glibly do. Our fear is of a private, internal loss of control, a humiliation in the eyes of others. Our fears are not unfounded: dementia is expected to be the single biggest health problem facing Australia in the twenty-first century. Research by Access Economics predicts that in the absence of a cure, and with the demographic bulge of baby boomers heading towards old age, almost a million Australians will be living with dementia by 2050, a tripling of current numbers. It forecasts a shortfall of 279,000 aged-care places by 2050, with dementia a key driver of this increased demand. And that doesn’t even take into account probable increases in longevity, with recent news reports predicting a pill within a decade that could extend life spans to 150 years. One day Mum was babysitting my toddler and I returned home to find no sign of my son. After a frantic search we found him in a neighbour’s backyard. What struck me at this point was my mother’s lack of emotion – she could not really understand what the problem was with letting an eighteen-month-old wander off alone. Didn’t he know best where he should go? At this point, I realised I couldn’t safely leave a child in her care. My father feared I would hurt her feelings, so I let her babysit, but asked Dad to be always watching.

Within years, Mum was diagnosed with mild cognitive disorder, and then frontal temporal lobe dementia. She would live at home with Dad until my first baby had turned ten – a near-decade that for my father began with a watchful eye over the top of his newspaper to check the grandchildren were really OK in Nana’s care, and ended with him dressing and feeding his wife, as well as locking every door to keep her safe. My second baby arrived and the grandsons grew up, while Mum’s range of abilities shrank. There were poignant moments of passage between the generations, like when the four-year-old could first use a telephone, while Nana could no longer work out the buttons. She had to give up driving, and then her volunteer work, and then public transport, after the police started bringing her home, disoriented. By the time we reached the stage of trying respite care, Mum’s world had grown so small that I hoped the aged-care centre, with its spacious but secure rooms, might provide some new interest for her.

But respite care proves a failure. Mum hates it and repeatedly refuses to leave the car on arrival. At the childcare centre, babies and toddlers who baulk at the front door can be carried in; you have no such power with a fit, strong, elderly woman. I look for other ways to give Dad a break. With my youngest son in his kindy year, I make a weekly date to take Mum shopping. On Tuesday mornings my son and I pick her up, take her to Doncaster Shoppingtown, visit all her favourite shops, stop for a cup of tea and a biscuit, and then head home again.

She loves Shoppingtown, but I dread these mornings. I am the mother of a young child, trying to steer an elderly mother who has herself become a young child. My heart is tight and I sense catastrophe on all sides. First there is the guiding of Mum, slow and distracted, through the busy car park, my boy held tight in my other hand. Once inside, I can relax a little; massive shopping centres have their own institutional qualities and, as we all know, leaving them is no easy thing.

My saving grace, besides my sweet-natured son, is the kindness of strangers. Staff in the shops she regularly visits are consistently, incredibly patient. They recognise her and say hello when she enters. They murmur about their own mothers and grandmothers as I apologise, they slowly explain things over and over to Mum, they give her free samples. When I take Mum out, I step nervously into the river of life, but I find it flowing fast with compassion and understanding.

Still, each trip grows harder. She doesn’t want to pay for things anymore, and I find myself physically wrestling with her in shops to stop her leaving with stolen goods. She can absently unbuckle her seatbelt and open her car door as we move through traffic, and she can freeze in the midst of crossing busy roads, staring at her feet as if puzzling out the mechanics of walking. She can merge into a crowd and disappear in a moment; she can accost strangers, convinced she knows them; or she can squeeze the fruit on display until it bursts.

The federal government offers Extended Aged Care at Home packages to carers, to help keep the frail elderly in the home longer, and Mum and Dad are finally awarded one. We breathe a sigh of relief; this will make all the difference. Two or three mornings of in-home help a week, case management, allied health professionals, incontinence care, advice on dementia – it feels like a lottery win.

And yet, it proves too little, too late. A rolling roster of women come to mind Mum in the home. Some refuse to take her out walking, and she spends the time inside, trying to get out. My snowy-haired father looks exhausted. Mum’s incontinence entails three loads of washing a day; the house is always draped with drying sheets. One day she drops a burning match in the rubbish bin and the fire burns a hole in the kitchen floor. The police or kind strangers repeatedly bring her home after she escapes from the house, one time at 3 a.m. on a heatwave night, a ghostly, dreamy figure in her long white nightie, found floating down the main street towards the river. She cannot seem to feel extremes of temperature and must be stopped from drinking freshly boiled water. She confuses inert objects with food; one old friend bursts into tears after she gives Mum flowers, only to see Mum chew thoughtfully on the blooms. She can’t settle to anything; whether at her home, or her daughters’, she is eternally tugging at the locked doors. Wherever she is, she wants to be somewhere else. She eats voraciously, a dementia symptom caused by shrinkage of the food regulation centre in the brain, and while naturally of a petite build, she puts on weight.

She is a 24-hour, seven-day-a-week job for a team of people, and not one for an 83-year-old man, we plead with our father. It is time to consider a nursing home. But oh, the terrors that nursing homes raise. The first time I mention the idea, I feel like I have suggested we open a bin and throw Mum away. Dad says no, quietly but firmly. Does he think I’m selfish? If she is in a home, I can worry less about her. But I am worried about them both. Either Mum will escape the care of her family and come to grief in traffic or at the hands of strangers, or Dad will collapse with nervous exhaustion.

Dad pushes on, determined. But then Mum’s sleep patterns, increasingly erratic, fall apart completely. She starts waking him at night, fully dressed with her handbag, wanting to go out. He gives her sleeping tablets, but they don’t work. One night, she wakes him up every hour, begging him to unlock the door. And then she does that for five nights in a row. Finally, my utterly exhausted father rings us early one morning and says it is time. She has to go into a nursing home. And she has to go now, because he has nothing left.

The home we choose, miraculously with a bed available that day, has an enclosed wing for dementia sufferers, with shared rooms of four beds. A Uniting Church-run home, well ordered if plainly furnished, it bears everywhere the familiar logo of Mum and Dad’s church. The dementia ward has two enclosed gardens, and a circular hall provides space for restless old people to roam. There are recreational activities, and visiting podiatrists, dentists, physiotherapists and hairdressers – all services that required exhausting day trips with Mum until now. We are overwhelmingly grateful for this well-designed institution, and its friendly, startlingly multicultural staff.

That same morning, we pack a small bag for Mum. My entire body is taut; my throat is tight. My parents have not lived apart for almost sixty years. We put her in my car and tell her we’re going shopping. And indeed, after months and months of heading so obviously to this point, it still seems like we could be heading out to buy bread. But she will never again return to her suburban home. We stay with her in the nursing home all afternoon, and then one by one, we slip away and leave her. Walking out to my car, I have never felt more wretched.

That night, wrung out with the day’s journeys, I lie with my youngest son, now six, to hear his bedtime story. Suddenly tearful, I hold him close and ask, ‘Will you look after Mummy when she’s an old lady?’

‘Of course!’ he says comfortingly, small arms hugging me back. ‘I’ll put you in the nursing home just like you did for Nana.’

I laugh, through my tears, at my son’s unexpected pragmatism. I’ll give you to someone else to be cared for, just as you have done for your own mother. And what utopian ideal did I expect? A room in my children’s homes, a place in their young families, their hands to soothe pains and wash me and feed me? Couldn’t I just sit quietly in a corner and shell peas, if they even do such a thing in the future? As I hold my son’s young body, I know I also hold the man who will one day face a decision like ours. Oh, to raise good men, and kind women. Our futures depend on it.

With each of us visiting a few times a week, Mum rarely has a day without seeing family. We find her doing laps of the circular corridor, trying every door, her blue handbag gripped tightly. She is always looking for the way out. I guide her to a table and make cups of tea, my two boys slipping off through the security door to explore this interesting place. I tell Mum what we’ve been doing, and ask her questions which she cannot answer. When conversation dries up I read to her, or if we are alone, I sing to her. Sometimes I play on the piano, pieces from my childhood music lessons to which she nods in recognition. She understands music in a way she no longer understands words.

Here, we are confronted by the peculiarities of Mum’s condition. While up to 70 per cent of dementia sufferers have Alzheimer’s, Mum’s frontal temporal lobe dementia, or FTD, is a rarer form. FTD is linked to shrinking of the frontal and temporal anterior lobes of the brain, which govern social behaviour, planning and speech. It can strike much earlier than Alzheimer’s. Symptoms can include inappropriate social behaviour, blunted emotions, repetitive or compulsive actions and difficulty in forming or understanding speech, while memory can remain intact. Mum has some short-term memory, and is the only one on her ward who recognises her family.

Often when visiting, I bump into my father or my sister, and sometimes my husband or my brother-in-law come too, and we end up all drinking tea together. Mum has a few phrases that she murmurs in rotation. ‘You’re marvellous.’ ‘The things you do.’ ‘I’ll go with you.’ ‘The boys.’ There was a time when her repetitiveness drove me crazy, but not now. She interjects with one phrase every now and then, and we nod, and keep talking. We talk about my sister’s children and mine, about people we know, about things happening out in the world, about our concerns for Mum. We talk silken skeins of memory and thought and idea and heartache and laughter that entwine us all, even the little boys as they dart back to steal biscuits before their next foray. Fragile old people brush past us like aged faeries, magical in their abandonment of reality, their gentle fingers on our faces, examining us as if we are friendly aliens, before they forget us and shuffle on, doing the endless circuit in the indifferent clothes which seem to move from one body to the next. We let them pass, and we keep talking; we keep making tea. At this unlikely place, watching the rhythms of institutional life, we draw breath after the terrors and crises of the past months, and we unknowingly prepare for what is to come, filling up on the peace and joy of each other’s presence before the far side of the storm hits. There is a table by a window in a dementia ward which is the site of some of the dearest memories of family I will ever know.

This time of working together to help my mother has not just drawn my family close. My husband and I have had a front-row seat at this incredible show: Elderly Man Cares for Crazy Elderly Woman. Forget film or literature; unfolding before us is truly one of the great love stories. It has sunk deep into my bones, more than any relationship counselling could. My father’s endless patience and love, his stubborn determination to put his girl before everything else. The safety and security my mother draws from my father. Their sheer liking of each other, despite the struggles. Their dignity, amidst the indignity. My own marriage has bathed in this sun, drawing strength from it and letting some scars heal, in ways I can’t quite explain.

Visiting the home, we develop an affectionate regard for the other residents. There’s crab lady, who walks sideways everywhere, an air of eternal expectation on her face, never heard to speak. There is tiny, gentle Christina, who timidly cuddles up to me, holding my hand. There is a short, nuggety red-faced lady who hit me once, but who is thankfully almost always with her visiting husband. There is the lady who hoots constantly. And there is Gwen. Some days Gwen is irritable, some days affectionate, some days insightful. Once I walk in, boys at my side, to find her on her feet before a row of chairbound residents. She is ranting at them about being in her house, and how they should go home now and leave her alone. I venture a greeting and she lowers her well-modulated voice and asks me: ‘Have you come to look at the house, with a view to purchase?’ My wide-eyed boys, delighted, switch their gaze from her to me.

‘Why yes,’ I say, entering into the spirit of play. ‘I have come to look at the house.’

She draws herself up to her full height and too late I realise my mistake, pushing the boys behind me as she begins to shout. ‘Well, it’s very damn rude of you to come in here without even knocking and presume to …’

We flee, find Mum and take her to a quieter part of the nursing home, the boys now incredulous. I am laughing, but I feel sorry for the residents who must live with each other’s intensities.

Another day, and for only one day, Mum rediscovers her ability to hug back. Mostly I hug her and she stands still, receiving affection but not returning it physically. On this day she lifts her arms and holds me, and we stand hugging in the television room. Gwen, having a better day, shuffles up with her sweet smile. ‘Look at that! You must have been a good mother,’ she observes. I hope Mum understood that. For years, she craved reassurance that she was a good mother. My brother developed schizophrenia at a time when ‘the schizophrenogenic mother’ was the psychiatric phrase of the day. It was her fault, explained the psychiatrist, outlining a theory now discredited.

‘But I loved him so much,’ she protested back then, bewildered.

‘It was the wrong sort of love,’ he said.

Ludwig Wittgenstein said: ‘If in life, we are surrounded by death, so too in the health of our intellect we are surrounded by madness.’ My family has known this for a long time. We don’t take sanity for granted. This place, this dementia ward, is not so very different from the Willsmere psychiatric institution, where my brother stayed long before they turned it into an upmarket housing estate. Difficult places, but sometimes when you love someone, you have to follow them into difficult places. I have always been aware of my sanity, always fearful of its ragged borders, standing back from them like you might avoid a cliff edge.

There’s a smell when you enter the dementia ward, a soft, sickly barrier you need to push through. It’s the smell of humans and disinfectant and boiled vegetables and some floral masking scent. Within a few steps, the smell disappears. In here, the four-bed wards are cosy and simple. The old people walk around, and sink down on the closest bed, not caring whose family photographs hang beside it. When I arrive, if I can’t find Mum walking around with her handbag, trying every door handle, then I visit every room to find which bed she’s fallen asleep in. Some days she is wearing her own clothes, sometimes those of a stranger. It doesn’t seem to matter. ‘I love you,’ I say, sitting by the bed where I’ve finally spotted her. A fat Italian boy, someone else’s grandson, stares out of a photograph next to the bed, holding a student-of-the-week award.

‘That’s the trouble,’ she breathes, staring past me.

Back home after the dementia ward, I turn on my favourite dance music and crank up the sound. My startled children watch me while I dance, crazy wild feet stamping, hips a-jiving, my sultry come-hither miming wasted on a row of kitchen appliances and two small boys. Shake this death, this ageing, off me. Tell me it won’t be me. I am one sexy, dancing dervish of a woman, oh yeah, and finally they join me, stamping and hooting and earnestly mimicking my hick, bottom-slapping, JLo-esque grooves until we all collapse on the floor in a breathless heap, no one spotting my tears. If in life, we are surrounded by death …

Mum’s voracious eating of recent months had caused Dad concern, and he had made half-hearted attempts to get her to ease up. In the nursing home, her appetite has free rein and the staff frequently marvel at how much she eats. This continues for the first four weeks of her stay until, suddenly, she stops eating. We are puzzled by this, and exchange nervous jokes: at least she has plenty of reserves with the extra kilograms she has put on recently. But we don’t laugh for long.

The looks of quiet recognition on the faces of staff, the glances they exchange, make me uneasy. They have seen this before. But again, I don’t want to know. I find it a little unnerving that within a few weeks of Mum moving in, the carers – Thai, Chinese, Indian, African – know more about what she likes than I do. ‘If we add sugar or honey, she’ll eat more,’ one nurse says conspiratorially, heaping sugar in Mum’s milk as if she has discovered penicillin. ‘We put extra honey on her Weet-Bix today and she ate half of it.’

I make what I hope is a respectfully doubtful face. ‘I don’t know,’ I murmur. I was always the kid with the embarrassing grated carrot sandwiches, the one who had her lolly bag whisked from her after parties. ‘It’s pretty bad for her.’

‘Not eating at all won’t do her much good either,’ says the nurse, with commendable restraint. Probably thinking, God save these poor residents from their idiot families.

‘She’s never really liked sugar,’ I tell the nurse helplessly, but I feel like an old person telling a bored youngster what life was like in the olden days.

Gwen shuffles in and then out, meeting a new male resident in the doorway. ‘Are you going?’ she begins. They stare at each other for a long moment.

‘Two-thirty, I believe,’ the man says. The carers have nicknamed him ‘the doctor,’ because he was an obstetrician. He looks younger than my father, and is still bright-eyed and handsome.

‘We must be careful,’ says Gwen.

The man hesitates, like a child newly invited to a game of pretence, who’s unsure what comes next. He wears a loose leather belt at a jaunty angle around his neck, as if he may have forgotten exactly where it went.

‘The words,’ says Gwen, and they nod and shuffle off together, around the circuit.

In here, all the energy that people put into appearing normal, all their lives, is abandoned. No more façades. Or maybe there are; I wondered sometimes in the early days whether Mum was pulling a great gag on us all, pretending to be mad. But watching her sad eyes here, I don’t think that now. I play the opening bars of Bach’s Minuet no. 5, which I have played in our home since I was nine years old, and more recently, when I visited Mum and Dad at home. She recognises the opening bar, the D and then the fall to G, and the run up the scale like water flowing uphill, an optimistic trill punctuated by two sharp Gs. She sobs and sobs and the nurse comes running with outstretched hands to stop me.

Weeks pass, and Mum barely eats. Her wrists are thin, her eyes big. In recent weeks I have neglected friendships, abandoned school duties, left my PhD thesis untouched, spent less time with my children. I tell my husband that I don’t know how much energy to put into Mum. Is this a passing thing, this not-eating, or is it everything? If I knew she had a certain amount of time left, I would visit every day. If I thought she had years of life ahead, I would pace myself, try to keep up with other things. As it is I’m a bad mother, a bad daughter, a bad scholarship recipient.

‘I think your mum is dying,’ he says gently. ‘Maybe not straight away. Maybe a month. Two.’

And the word takes my breath away. Dying. I remember the beloved cat we owned for sixteen years, who died last year. Sick and weak, she kept crawling away into dark places. I knew very well she was trying to die in private, but I would not let her. When she crawled under the house, I ordered the nine-year-old after her on his belly to bring her out.

We take Mum to my house for dinner. We put her in the car at the nursing home and I drive away feeling as if I’ve stolen an artwork from a gallery. I have cooked all her favourite food, all from her own recipes, written in her elegant handwriting. Rice pilaf, banana nut curry, prawns, green vegetables. She eats two spoons of peas, drinks some juice. She holds my eyes with her own and whispers things I cannot hear. She gazes at the boys with fierce and silent lucidity. She accepts some tiny prawns and Dad is elated by each mouthful. She is tired and we raise her to her feet, like lifting a fallen tree, and we manoeuvre her back to the car and return her to the home.

The first time Mum is taken to hospital, it is a family decision. She has stopped leaving her bed, and has grown weak from not eating. We are gathered at her bedside. ‘She must be dehydrated,’ said Dad. ‘She’s flat. She’s not herself. She’s not drinking enough.’

‘It might be her way of letting you know,’ whispers the Uniting Church chaplain who has dropped by. She eyes us with deep meaning. We are bewildered.

‘Know what?’ I say. Could my mother be capable of speaking in code?

‘That she’s made a decision,’ the chaplain says gently.

Ah.

Privately, we doubt Mum is capable of a decision involving such reason and will. What if there is some physical pain she can’t express? An ambulance takes her to hospital.

Over a five-day stay, and after rehydration from a saline drip, Mum eats a little more. Dad spoon-feeds her, cheering on every mouthful. X-rays and dental checks reveal no problems. She has a TV in her room, which she seems to enjoy. My boys have another institution to explore; they take turns trying on the blood pressure armband and pumping it up until they’re squeaking with pain, before dashing off to the café with fifty cents each. I fear that after some days in bed, and so frail anyway, Mum might not regain the ability to walk again, but she gets out of bed, with help, and walks slowly. We take her over to the park, to sit in the sun amongst the trees, facing the silvery skyline of the city she has always loved. She recognises us all. While her face is largely expressionless, her eyes relax when they rest on her family, especially her grandchildren. We hope we are over the worst of this, and we nervously take her ‘home’ to the nursing home.

Soon, her eating declines again to just a few mouthfuls of food a day, and a glass of fortified milk. A dentist comes and says she needs teeth extracted. Dad calls a meeting of the three of us. My sister and I can’t stand the thought of putting this wraith under anaesthetic and making her endure the pain of teeth extraction. But could it save her, Dad wonders? And could it, we are all forced to consider? We decide against it. She is far too fragile, and for the first time, together and out loud, we acknowledge that she is dying. While we have faced up to it privately, to differing extents, on this night we face up to it together. I feel deep down that it has been our love and our will, particularly Dad’s, that have held her alive this long. And on this night, with his eyes blinking fast, he begins to let her go.

I cancel everything. I stop returning calls, or making plans. I take shelter, not wanting my aching heart exposed to the world. I eat guiltily, conscious of how much I consume while my mother starves herself. Food looks different to me. Meat becomes inedible. If I skip a meal, my children fly all over me with their fears: You’re not eating enough! Please eat more! They have overheard our worries about Nana not eating and they too are more conscious of food. Maybe they think this is what mothers do; they stop eating. They must be chivvied to do so. From my point of view, I find it’s not nice, being nagged and worried at to eat. It’s irritating. Maybe Mum would eat if everyone just left her alone.

We, my husband and my sons, have a long-booked four-day trip to a Queensland island due now. My father and sister urge us to go. At the last minute, we decide to do it. My favourite memory of those numb, sun-soaked days is snorkelling in the ocean with my ten-year-old, floating as we scan a reef of bare rock below. Suddenly a vast, elephant-sized rock rises towards us, sprouts four feet and a head, and swims majestically off into the deep green. A turtle. A deep dark creature, disturbed in its deep dark home.

Back home, Mum is thinner, and quieter. Melbourne winter is at its pointy end. Mean rain lashes; winter, it seems, will last forever. I sit beside Mum’s bed and sing to her, and she lifts a frail hand and rests it on my arm, maybe to stop me. We sit in silence and she stares hard into space, as if listening for something I can’t hear. My sister arrives, meets my eyes briefly and takes up the other side of the bed without a word. We don’t need words around here anymore.

Visits are now mostly silent, broken by my mother’s tantalising half-murmurs of, ‘He said that …’ or ‘I wish that …’ Oh, how we strain now to hear, finishing sentences for her with the anxious refrains of our own mind. Does she wish she were dead? That I’d leave her alone? That I’d take her home? Who knows the journeys she takes on these long silent stares out the window, or the conversations she thinks she is having when she meets my eyes? In The Eye of The Storm, Patrick White’s novel about an elderly woman dying amidst a team or nurses and two money- and love-hungry adult children, Elizabeth Hunter’s thoughts and memories swirl, like water around a plughole, around an incident on an island, presented as the defining incident of her life. I would guess my mother’s own eye of the storm would be something to do with my brother’s illness, another crisis of caring and the greatest blow her own psyche sustained. And which particular incident would she revisit? God, I hope none, but there are options. The first psychosis, a team of medical strangers pushing a needle through jeans into his thigh in the front yard. A hospital intensive-care ward, where my handsome brother opened dark-lashed eyes after his suicide attempt, and closed them in despair when he confronted his family, proof of another failure. The last night he walked out, saying goodbye to Mum at her sewing machine, never to be seen again.

Or maybe, as Mum stares out the window with winter’s bare branches reflected in her dark eyes, maybe she searches, like Elizabeth Hunter, for some revelation greater than the past ever offered: ‘Now surely, at the end of your life, you can expect to be shown the inconceivable something you have always, it seems, been looking for.’

I visit her in the home on a Thursday in August. She is withdrawn, as if everything’s been said. She stares unseeingly out the window. She has barely eaten more than a few mouthfuls a day for eight weeks. I take her to a cooking demonstration in the common room; a dozen snowy-haired women watch, with immense satisfaction, the pleasing processes of a younger woman stirring flour and sugar and adding milk and breaking in eggs. The divine rituals of baking. Mum sits, her gaze turned within. When the chocolate chip biscuits are cooked, their smell irresistible to any hunger-striker, she eats a quarter of one.

That night I am riding my bike to meet a friend when I get the call from the nursing home. ‘Blood tests show your mother is dangerously dehydrated; she needs to go straight to hospital immediately.’

My adrenaline levels spike. I juggle a wayward bicycle, which is crashing between my legs while I fumble with the mobile phone in the dark, fruit bats circling overhead. ‘And if she doesn’t?’

A sigh, from a nurse too tired to sugar-coat her words. ‘Then she’ll die.’

Once again there is the ambulance, there is my father and sister, there is an emergency department, there is a rehydration drip. Young nurses sticking things in her, testing her, poking her, pushing her. Her shrunken body is still and unmoving on a hospital trolley. She opens her eyes and stares at us with loaded silence. She could be speaking. Let me go.

I can’t write of the family discussion we have the next day. When it becomes clear that intravenous hydration and nasogastric-feeding could maybe drag her back into the world, for more unhappy weeks. When it becomes clear that it is time for a strong decision, a difficult decision, from the people who love her best. When it becomes clear that the young geriatric doctor, an unlikely expert on ageing and death, will not oppose such a decision, in fact will silently support it. But by the end of Friday, she is free of any tubes. She is conscious and communicating with us in her way: with her eyes, her touch and her few words. She is still steadfastly resisting food and drink, and we are no longer resisting her will. She is in a comfortable bed in a private room in a hospital. For the first time in a long time, she is, in a way, in control.

There is time to say goodbye, to know that it’s coming and to give so many last kisses, last whispers, last I’m sorrys and I love yous. Time for grandchildren to be told, with certainty, this is it. Nana is dying, not in the sense that we all are, but any day now. Time for my father to hold her hand for hours on end, knowing that, in fact, these are the hours of the end. There is a little morphine and she is comfortable, and incredibly, she still knows each face of her close family. She cannot speak more than a few faint words, so you may wonder how I know that, but I do.

I watch her beautiful hands. She folds them over her stomach, over the white sheet, her fingers threaded. She holds a pen; she toys with a piece of paper. She rests her fingertips upon us, as if to keep us just a minute longer, when we aren’t leaving anyway. Her hands have the elegance of a movie star’s. They have such life and delicacy, they cannot be the hands of a dying woman.

‘Kill me if I ever get dementia.’ I picture her laughing as she said it, with her lovely dark eyes and her curly dark hair, but she would have meant it, in the loose way so many people mean it when they say it. One reason people give is their desire not to be a nuisance to their family. But standing here at the end of eight or more years of my mother’s dementia, I would not want to have missed those years, and I know my father would not give up a minute of them. I have learnt about myself from those years; about life and love and death. I have had a chance to help care for my mother, and that’s helped me forgive myself for earlier times when I was selfish and rebellious, cool and jealous of all the energy she gave to my sick brother. Throughout the dementia years, she has still been Nana to my boys – some of my youngest son’s fondest memories of life before school are of those crazy Shoppingtown Tuesdays. She remained an object of love to many, and her presence brought us joy, even if she was not the intelligent and funny person she had once been. And I believe, strangely enough, that the dementia years might have been Mum’s happiest, up until the growing agitation of the last six months. She appeared content, the small circle of family around her bringing her delight and peace, the sharp grief of my brother’s loss dulled. The little things – a trip to Shoppingtown, some fish for lunch – were a joy, while in her earlier life she could be mercurial, and dissatisfied by aspects of the hand life had dealt her.

So how do we know what gifts may come from our crazy old age? How do we know whether we might not reach some new place of inner peace, even as we’re terrorising shopkeepers and brandishing our teeth? If we plan to kill ourselves to outsmart dementia, why not just score a victory over all the possible things that could go wrong in our lives and do it when we’re young, not live at all? Maybe, just maybe, dementia is not always a state of shame and misery. Perhaps it is merely another stage of life’s journey, one where we jettison the heavy baggage of life, and sail as empty-handed as a baby into the sweet blue waters of a wisdom beyond words or memory.

By Sunday, we decide someone needs to stay with her at night. I volunteer for the first night, and a camp-bed mattress is borrowed from the maternity ward on the same floor, usually used by fathers sleeping near their newborns. Everyone says goodbye to Mum; they will be back in the morning. Once alone with her in her private room, I channel-surf until I find a silly, girly Katherine Heigl movie, 27 Dresses. It seems an unlikely thing to watch, but I am a little afraid in that twilight room of the dying, and it feels comfortingly normal to pretend I am just a daughter watching a chick flick with her mother. Mum is conscious and peaceful. The hospital slips into its night routine. The corridor lights are dimmed. Later, I turn off the TV and we sit in silence, our identical hands together. I turn some classical music on low, something gentle and plaintive. But at this, she tosses and turns and whimpers, her face pained, and I realise the language of music remains only too clear to her. It is holding her here on earth with its beauty, its pure human longing, and she does not want to be held here any more. I turn off the music, curl up on my mattress and try to sleep.

At 3.30 a.m., the nurses come and turn her, and wash her, and renew her low dose of sedative. Her body is milky-white, her thighs like a young woman’s, her belly soft, her hands reaching out, even then, for the sheet to cover her modesty.

Atdawn, I wake from my mattress on the floor when a nurse murmurs at Mum’s bedside. I can hear Mum’s hoarse breathing; there are no questions there, despite the rattle. She is alive. But, ‘Her hands are cold,’ the nurse says, meeting my eyes. Her beautiful hands. Life is leaving her peripheries, moving inwards like a tide.

It is happening.

I fight my way out of sleep and stand up. The nurse’s soft voice drops low. ‘I think you should ring your father,’ she says. ‘Tell him to come now.’ I sit beside my mother as she takes her last breaths, her face turned in my direction, her eyes open but unfocused. I hold her and stroke her hair and follow her as far as I can, along some sandy shore at the edge of time. And then that heavy breathing stops, and although I wait, the new silence remains. She has gone. She has made it to that far-off place she has been striving for, all these weeks. And I am in that room alone, with the hum of the air conditioning, and the faraway sound of early morning city traffic.

I have already called my father, and I know he’s driving in. I can’t tell him this thing on a mobile phone, so I wait out in the bright, bustling hospital hallway, by the lift doors through which he will come. I wait, staring at those silver doors, willing them to part. Nurses come and go around me, while I stand in a pillar of life, angels darting everywhere, my mother’s body still warm and alone in a room down the hall, reverence clinging to every shadow, every light, every sign, every metre of the hallowed, well-trodden carpet that leads along the funnel of hallway to her closed door. I pace and breathe and stare at the world of a hospital, still going on around me. Nurses murmur and consult clipboards. Breakfast trays are wheeled past. The lift doors stay closed. My entire body trembles from head to toe, as I wait.

And then, from the closed doors of a maternity room behind me, I hear the paper-tearing cry of a newborn baby. Brand new life. I gulp a great breath of air, and with the chime of a bell, the lift doors before me slide open.