They say it started with blackouts. Falling like a felled tree in unforested places. Several times, outside the strip of shops she lives near. The locals all know her, so whenever it happens, they run to my brother’s house and hammer at his door.
‘She’s had a fall.’
And there she was, all four-feet-eleven inches, prone on the ground. In her shopping trolley we find packets of biscuits and a day-old dinner still on the plate, vegetables congealing while we wait for the ambulance.
It’s fortunate that this happened in public. If she’d been at home, it could have been in the shower, or on the stairs. Crumpled on the floor by her single bed, unfound. But it’s not actually lucky at all. She’s done all the right things: worked until retirement, voraciously ploughed through books, squinting at word-search puzzles under her bedside lamp. The stats ensnared her. Ushered her in, and she sat, docile, not comprehending what was happening. Memories became segregated from the parts of her that occasionally still note the time, or recognise a famous face in the newspapers we bring. The neural path between her eyes and brain is now choked with weeds.
The blackouts weren’t the start of it. We know that. There’s a different kind of blackness in her brain, one that started with circular conversations, asking the barest amount of sociable questions. Enough to be polite. As she sat at our kitchen table for dinner over the weeks, I saw her moving away from us. A grainy facsimile of who she used to be. My children are always patient when she asks, ‘Were you in school today?’ Sometimes it’s the sixth time in half an hour. Sometimes it is Saturday.
No one has an auntie like Terry. This is often said, without resentment, by my other aunts. They all recognise the goodness in her. When I mention her to people, I often say that she is my second mother. She’s my godmother too. My middle name is the same as hers, as is my daughter’s.
She did all the things you’re meant to do with kids who adore you – bake, cook, paint, craft, make couture doll outfits. She indulged my random fashion phases with nuanced, well-chosen clothes and accessories. My first books were gifts from her: faux-leather hardbacks and abridged versions of the classics. Later, we’d scour second-hand shops together for copies of Agatha Christie and Ngaio Marsh. I don’t say it lightly, but she is the reason I’m a reader and a writer. Her constant, gentle nudges towards the written word are an unrepayable debt.
Her tininess is distinctive. Compact, but fierce. She wears Scholl shoes (size three) and sheer scarves. On nights out she favours wrap-around dresses with high heels, bringing her over the 5ft mark. Frosted pink lipsticks, a shimmer of powder over her freckles. Her tipple is always white wine, or Vodka and 7 Up. Or it used to be. The conflict of tenses, of trying not to talk about her in the past tense. The dresses are packed away. She wears fleeces and slippers now. Her hair is longer than it’s ever been. Blue eyes curtained by the glassy sheen of age.
When she’s had her fourth, fifth, maybe sixth fall on the street, an ambulance brings her to hospital. Soon, the Irish healthcare system needs her bed for someone else and she is moved to a dementia ward in a Dickensian building. On the patient whiteboard I spot the name of a prominent poet, but don’t ever see him. People disappear here, into themselves, into the dado-railed wards and lightless corners.
Across from my aunt is a woman who shouts in urgent, iambic bursts. She sidles up to me and hisses, ‘Don’t talk to her! She wants to tell everyone your business!’ Another patient carries a doll everywhere, stroking its hair, while her husband sits at her bedside. These women, with children of their own, with lives and achievements behind them, would not recognise themselves as they are now.
I fear losing my mind more than I do dying. I’d take shark attacks and falling from a height and being stabbed before I’d take my mind being hijacked and replaced with clouds. I would take another round of cancer over untreatable dementia. The toxic silt of chemotherapy sludging through veins. Poison as poultice. I’d take that over my family watching my personality, my memory, me, drift to the bottom of some unreachable sea. Anchored in the dark, the weight of all that water. Memory punctured, slowly deflating, sinking. Where did you go?
There are busy decades in Terry’s life before all of this. Before illness stole her from us. In the 1950s there were factories for working-class Crumlin teenagers, which threw open their doors to girls like Terry who left school at 14. Cosmetic makers and confectioners; clothing companies with rows of young girls hunched over sewing machines. Terry worked for all of them. Her father joined other Irish emigrants catching the boat to Holyhead, and was gone for years. When Terry was in her early twenties her mother died – my father was just eleven. As the only girl in the family, the role of primary caregiver fell to her. No matter that she had a full-time job and a life to lead.
Generations of women have, by virtue of their gender, been made accidental matriarchs, even if they’ve never given birth. A kind of motherhood was thrust upon Terry – caring for younger siblings and elderly relatives. Because she was a woman she was presumed a de facto carer: a sheet washer and bed changer. Another of the red-tape hecklers who argue with local authorities about medical grants; a chauffeur to hospital appointments. For women like Terry, there must be an abdication of the self. A ceding of something. Life must be pruned, but what to give up? Love, art or independence? The role of nourisher, this proxy parenthood, happens more consistently to women.
It’s also more likely for women than men to lose their memory in old age. Most people use dementia and Alzheimer’s interchangeably, a doctor I ask tells me, but Alzheimer’s accounts for only 50–75 per cent of all dementia cases. There is no narrower figure than that 25 per cent range, he tells me – it’s a hard disease to diagnose.
There are theories, but no definitive reasons why women are more affected. Researchers at Stanford University believe that carrying a copy of the ApoE4 gene increases the risk for women, but not for men, because of how it interacts with oestrogen. A hormonal fait accompli. Another basic, uncomplicated factor is age and life expectancy. Women live longer than men, and are then caught in the Alzheimer’s trap.
A nurse tells me a story about another gender impact. Women, the ubiquitous carers, are more likely to nurse their relatives at home until they can’t cope. Men, especially those of today’s elderly generation, weren’t raised as carers or cooks. They don’t know how to look after their wives so sign them into nursing homes right away.
How do we know when it starts? How to differentiate dementia from climbing the stairs to retrieve something, but being unable to remember what? Do we declare an onset of Alzheimer’s after forgetting a famous face (you know, what’s his name?). It’s a dim boundary, but at some point our neurons struggle to recalibrate. The cortex and hippocampus are irrevocably changed. In memory loss, there is already death. Cells die and each one is a divesting of some part of the past. The cortex shrinks where the cells used to be. The spaces in between expand. Islands in the sea of the mind. An archipelago of the former self.
Terry never married, and there were never, in my lifetime, any partners. I think this is a situation she was content with, but I can’t be certain. She didn’t resemble the societal caricatures of women like her. The maiden aunt, or spinster, living a Lolly Willowes life. Her friends were her social lifeline, and they took pilgrimages to Knock together, organised by the local church. Holy water bottles filled with vodka, giggling on the coach home. She worked for a big drinks company and there was always booze in her house, even though she was a late convert to alcohol. I visited her regularly in my late teens and sometimes we’d sip wine by the fire, or out in the garden in summer. I’d try to spool back through her life, testing the ice of what I could ask about. There were some men, tentative dates, but ‘They always annoyed me’, she laughs. Our closeness is a comfortable one, without judgement, and as we talk, it becomes clear that she has never been physical with anyone. We don’t make it as far as whether she regrets this, but I absorb it. When I think of it, even now, I feel it like a shove: her loneliness.
Still, she has a small but close band of friends, and is always surrounded by family. No matter what the company, she is indefatigably herself. Wry, wise, funny. Strong and self-sufficient, she asks nothing of anyone. Class or the ubiquitously observed Catholicism of the day may have instructed her not to demand too much. Occasionally I heard her put on a posh voice, often used in deference to actual posh people.
There is her laughter, a once-frequent shriek of delight, but it is rare these days. Laughing at a joke means you understand. There is a moment of cognisance; I see what you did there. Back at home after her stint in the dementia ward, she’s replaced books with TV. One afternoon it’s blaring a show about fishing and I ask her about a trip to Rimini she took with her best friend. There was sunburn and men chatted them up as they sipped Limoncello. When she tells this story, I picture her Hepburn-like in shades and a headscarf, driving along a cliff road. I wish I’d known her then, her younger self; so much responsibility at home but free of it for a few days on the Italian coast.
Every week we invite her for dinner, and slowly the words start to drain out of her. Vocabulary becomes an unfamiliar tool, as if she’s handling a wrench. There was always easy conversation and discussion, but now the words become flotsam, just out of her reach, hard to snag. Lining them up is so much effort that she can sit through pasta and salads, sometimes as far as dessert, completely wordless. Her friendships, save for one or two, start to get left behind. She refuses to travel, attend family events. She stops going to Mass, and then she misses a close neighbour’s funeral. The self she knew inches away from her, and she begins to abandon her own life. I think of a line from Lolly Willowes: ‘It is best as one grows older to strip oneself of possessions, to shed oneself downward like a tree, to be almost wholly earth before one dies.’
It is innate, this fear of unravelling. We might not see the car as we step off the kerb, or feel the bullet’s initial bite into skin, but we know something has happened. We know there will be blood. It’s the stealth of Alzheimer’s that’s so cruel. In most deaths – even a drawn out, throat-rattling, morphine-addled demise – we remain ourselves. Medicated, intubated, but us. This illness transforms only the interior. The body becomes less a prison than an aquarium. Visitors, the people you love, looking in, regarding the body-snatched version of your mind. You, looking out, your whole worldview distorted as if by water and that thick, impermeable membrane. You now, and you as you once were, on separate sides of the glass.
It eventually becomes clear, though we admit it with devastation, that Terry needs full-time care. My parents scour the city for a nursing home that is close to where we all live. They find a clean, comfortable place where the staff is kind and there is a garden. On the first day, when she is transferred from the hospital, she refuses to go in, screaming in front of the building, blaming my father, much to his distress. They have done so much for her, but are getting older themselves. They cannot take her on.
In the first weeks she keeps to herself, and rarely leaves her shared room. In the other bed is a woman who is never awake. The only sound is the pump filling her pressure mattress, air spreading under her frail limbs. On the wall there is a framed photo of me at a book awards ceremony. One winter day, when the light has gone by late afternoon, she gestures to it, eyes trained on my daughter, and says: ‘Look! There’s . . .’ and even though I am there beside her, my name is a mystery. A collapsed dune, thousands of grains seeping from the hole in her memory.
The house where she grew up was built in the 1930s, and the back gardens are long rectangles. As I’ve grown, so has the garden, the lawn now shaded by the height of the trees. I see her with gloves and secateurs, always planting and sowing, deadheading rotted petals. Yellow snapdragons and silken tea roses. Purple African daisies that she insists on calling ‘union flowers’ because they close their petals at sundown. In summer the air hangs with the perfume of sweet pea in pink and mauve (a word that instantly makes me think of her). And there is lavender – bushes of it – heady for only a couple of months a year. A row of plum trees sprout, their close planting like upturned ribs, with two makeshift swings on the branches. We’d push ourselves as high as we could, gripping the greasy twine, learning to tuck our legs under on the descent to build momentum. Her happiest moments were spent here, taming the overgrown honeysuckle with string, battling a relentless buddleia.
In the summer we sit in the back garden of the nursing home, and she tells me – conspiratorially – that there’s a secret door in the wall. The first time I’m curious, but we find only a laundry room, the rumble of dryers, the smell of steam and artificial meadows. I ask about the flowers in the raised beds, but the names have long left her. Each time we pass, she insists that my father planted them (he didn’t).
I know her tricks now. The ones she uses when she is trying to hide the fact that she and her memory are at odds. She feigns deafness sometimes, ‘What?’ which buys her a couple of moments to process a question. Mostly, she shrugs, as if she doesn’t care, but I see the shadow pass over her face. The struggle. She never talks about what is happening, but I know that she knows. After a particularly difficult attempt at telling a story, she stops, and says with a haltingness that takes the air out of the room: ‘Sometimes . . . the words . . . I just can’t find them.’
We rarely ask people their stories, the small moments and big joys of their lives. Their regrets. We don’t until it’s too late. Until we are sipping whiskey from the wrong size glass at someone’s wake. She is still here and I don’t know how to ask, Did you ever fall in love? It’s too big a question now, too impertinent to pose when her brain struggles with ‘Do you want me to turn the TV down?’
My daughter makes signs for Terry’s door. One declares her the best auntie in the world. They’re a statement of ownership – a flag staked on a mountain top – but their main function, on this small, straight corridor of bleached floors, is so that she can tell which room is hers. There are lots of optional activities – art, crafts and social events – but she refuses to get involved. She used to paint, and on the sitting room wall of my childhood I remember a framed seascape. In her sixties I bought her new brushes, fat tubes of oils and small canvases, hoping she’d take up art again. My father found them in a wardrobe, unopened, while packing up some of her things to move her here.
When I see her now there is a still a flicker of recognition, but it dims a little more every time. One weekend I arrive to her laughing with another patient. Arms linked, we walk back to her bedroom and I ask about the new pal. There is nothing on her face to say she is being evasive. Instead, she has already forgotten the moment of them laughing, and cannot tell me her name. This annihilation of moments that have literally just happened is new.
This is not the worst it could be. Others tell me stories, friends caring for parents, their collective faces carry the same resignation. The woman who keeps being found at bus-stops because she’s going to visit her siblings – who all live in England; a mother who hits her adult daughter because she thinks she’s her husband’s new girlfriend; a man who has never been to war talking about life in the trenches. Terry’s manifestation is quiet withdrawal, repetition, a feeling that something is not quite right.
By spring, her body starts to draw level with her mind in terms of deterioration. There is double incontinence, her appetite diminishes. A cup of tea dangles at a dangerous angle in her freckled hand. The sentences become even more half-formed, the lexical equivalent of a ghost estate. She walks me to the door, and I see the stoop, the tilting of her frame, the slack arm. A nurse notices too, and later they call to say she’s in hospital after a mini stroke. But she is awake and here and still trying to shuffle words into the right order. Her kind face, once full of hundreds of stories, now only wants to sleep.
One of us is in a boat, the other on the land. She is so still these days, so quiet, that it must be her up there on the clifftop looking down. I am the traveller departing, tilting on the waves. The house and garden, once so full of her, are quiet, rose petals falling, plums still clotting on the branches every autumn. She lives two kilometres away from her old life, almost a straight line from the house. She is in her eightieth year in a quiet room, unseeing the news, unreading the books on her bedside locker, but still smiling whenever someone she thinks she knows walks in.
In April, there is another mini stroke, a declaration of what’s to come: more seizures, rocketing blood pressure, the total evaporation of speech. Her life pinballs between nursing home and hospital. She begins to refuse food. I offer her yoghurt and creamed rice on a spoon, and she seals her mouth into a tight line. A hospice nurse arrives to insert a morphine pump, talking quietly about phases of death, about ‘active’ dying. And there it is. We know now that she will leave us in a handful of days.
In her room the staff set up a mini altar: a white statue of the Virgin Mary, holy water and candles (electric, for safety). To secularise this, I add a book and flowers from her garden, London pride and African daisies. It’s too early for lavender, so I bring oil instead, dropping it onto her pillow, mixing it with hand cream to rub into the ridges of her veins.
Over the weekend her breathing becomes apnoeic, deeply drawn from the well of her lungs. A juddering sound, then nothing for up to twenty-five seconds. I stare at her unrising chest, watching the pulse in her neck, a weakening beacon under the skin. The nurses say she can still hear, so I read her The Clocks by Agatha Christie. Staff appear occasionally, making checks, offering tea. Her height was one source of her self-deprecation, ‘Good goods in small parcels’ she’d say, and now she looks even tinier, lost under the sheets.
Death has a particular smell. A finality, a staleness. Like an unaired house, or the space under the stairs. Her room has never felt so small. There is so much waiting. Time is static, but creeping on, measured by her worsening breath. By Sunday, after midnight, it is loud and anaerobic. This battling with her own body is hard to watch. My father and I sit by the fake candles. More morphine to ease her distress. The beacon in her neck slows, her skin starts to cool. Leaving the home on that last night, I kiss her hands. You were so kind, so important. You were so loved.
Terry dies in the early hours of May Day or Bealtaine, sometimes called Lá Buidhe Bealtaine, ‘the Bright Yellow Day’. On May Day, yellow flowers celebrated the start of summer, because they resemble fire and were placed on doors and windowsills for good luck. On Terry’s coffin we place yellow lilies alongside paintbrushes, books and a framed black-and-white photo of her and best friend in 60s mini dress and sunglasses. A time when her life still had so much possibility, her mind carefree, hungry for words. Bealtaine is halfway between spring equinox and Summer Solstice, the opposite festival to Samhain, symbolic of endings: of bright months, the harvest; while Halloween overlaps the worlds of the living and the dead. Dementia left Terry halfway between her recent self and the person we had known and loved.
Author Sylvia Townsend Warner also died on 1 May, 39 years earlier. In creating Lolly Willowes, Townsend Warner gave literature one of its most famous female characters. A woman who obliterated the idea of what a woman alone could be, a woman who revelled in her independence and found solace in nature. And a character who demands the question of all of us: what constitutes a self-determined life, a life well-lived? The way Terry lived hers – being vital, real and exactly who she was – impacted hugely on my brothers and me. We were not related to her by blood, but felt she was in our DNA. Her skin was ours, our hearts were hers.
Days as dark as when she died – numb ones full of shock – are rare. There was another some years back, when I was in hospital with a lung clot. My husband had just left after a long day and Terry was there when the really bad news came. A completely unexpected diagnosis of aggressive leukemia. We stared at each other, baffled, distraught. It was the only time I ever saw her cry. ‘What’ll I do without you?’ she said, finally. And this is what I have been asking myself since that May Monday.
It is finally summer, and every bloom in Terry’s garden is thriving in the sun. On what would have been her eightieth birthday, we spread her ashes. Greyness falling on the open petals, on rose thorns, on the daisies and clover that have encroached since she stopped tending the lawn, and on the purple spears of lavender swaying in the breeze.
Image © TavoA Photo