Sarah Catherall’s mother has suffered from Alzheimer’s for 14 years; it’s been four years since she last recognised her family. Would she want to keep living this way?
Mum sleeps with her eyes wide open, snoring. Lying back in her floral patterned bed in the rest home, her grey-blue eyes stare blankly upwards. Her bed has a steel hand rail to stop her falling out. I touch her arthritic hand and she flinches. I think she is awake now, but I’m not sure. The ceiling she stares at is the same shade as the vanilla instant pudding she fed us as kids.
“Happy birthday Mum,’’ I say. Her cheek is soft to kiss.
My mother was never supposed to make it to 75. When she was diagnosed with Alzheimer’s at the age of 61, the doctors gave her a decade, at most.
Mum’s bed is surrounded by framed memories of her life. There’s a photograph of me with my daughter, Bianca, taken 14 years ago, when Mum was still Mum. A picture of Mum’s own mother, smiling, sits near a vase of pale pink silk roses. A wooden crucifix hangs above a hospital trolley, near the nurse’s call button Mum doesn’t know how to operate. Visitors scribble their messages in a floral visitor book with a faded front cover.
“Mary smiled today,’’ one wrote.
This $1000-a-week rest home has been Mum’s home for seven years. The stench of urine and disinfectant in her room makes my stomach lurch. Her hand curls over like the crook of a walking stick, its bones and veins a road map of her life.
Mum’s caregiver today is a Filipino woman, Darna (not her real name) who is 25, half my age. Darna left her family in Manila to come here for work, to care for my mother and others confined in this rest home. Mum would love Darna’s wide smile and her gentle aura, the way her black silky bob swings as she walks, her wide shoulders stretched like wings.
Darna is Mum’s guardian angel. The food trolley rattles in the corridor.
This is what the last stage of Alzheimer’s disease looks like. Mum’s sunken, concave chest rises and falls as she sleeps. Food has pooled in her mouth. Some of her teeth are yellowing and bloody in parts and a couple of molars are missing. Tiny grey hairs sprout from her chin, which Dad plucks out with tweezers when he visits. Her face is pale and unlined from years spent inside. In any other setting, we’d admire her flawless skin.
A fountain hisses and bubbles outside her bedroom window. I can hear bees buzzing in the lavender bushes. Mum doesn’t know the garden is there, but she would love it if she could see it.
After we moved into our second home when I was 12 years old, Dad brought in a trailer load of dirt, and we all helped shovel soil into the flower beds he built. Mum sowed rows of roses and camelias, and Dad dug a huge hole for an avocado seedling he planted with particular care.
I remember Mum bowed over her Garden of Eden, pulling out weeds and clipping dead rose heads with a pair of shiny red secateurs. When my youngest sister left home, Mum seemed to go through a kind of mourning, spending more time in the garden than ever before. She clipped and chopped, pulling out old flowers and replacing them with new seedlings.
Mum’s buxus hedge grew so much it needed to be constantly clipped, and the white roses in her garden bloomed all year round. Four years ago, when Mum truly forgot who we were, Dad’s giant avocado tree fell over in a massive storm. As the wind whipped around the fallen tree, roots stuck out of the ground like angry tentacles. Just a couple of roots stayed firmly in the ground, refusing to budge. Dad considered chopping the tree up but he left it, and the tree lay on its side, as though sleeping.
As Mum worsened, it was a miracle, really, that the avocado tree continued to bear fruit. It was more bountiful than ever, producing creamy, ripe avocados that tasted like nothing else.
The tree lived on. But just last winter, the avocados never reached full maturity. It was as if something had stopped them. Dad sometimes ripens the fruit in the sunshine, on the kitchen bench in the home where he now lives alone.
Mum splutters on the bed. Darna wraps a blood pressure monitor around Mum’s arm, pumping it. Outside, a sprinkler suddenly switches on, hissing over the white roses like a snake.
“Your mother’s heart is still so strong,’’ Darna says, as though this should make me happy.
I’m pleased to inform you that there has been no real change with Mary. Her eating remains the same. She has managed to eat 4 full meals for the week, otherwise it has been a few mouthfuls before she starts to spit the food out. I’ve checked fluids and on average she will have quarter to half a cup of what is offered. She has had no further episodes of choking and most of the time Mary appears comfortable. Kind regards, C.
On a Saturday afternoon when Dad’s garden is soaked with heavy rain, he and I visit Mum. I sign a waiver form at the rest home reception, my handwriting wobbling on lines with barely any space between. Dad pumps hand sanitiser from a plastic dispenser, covering his calloused fingers in the slimy liquid.
“Nice to see you, Doug,’’ the receptionist says. She passes us both a face mask.
We have half an hour to spend with Mum. At level two of Covid, we’re allowed to visit but only if we prebook and only for a limited time. For six weeks, residents were kept in their rooms.
I’ve walked along these hallways so many times in the past seven years but I still forget which way to turn from reception. They all look the same, running in a quadrant around the hospital wing. The doors to the residents rooms are a row of wooden rectangles painted dark red, like old blood. The name badge on the one a couple along from Mum’s is missing.
“Snuffed it,’’ Dad says.
Mum’s door is marked with a photograph Dad chose from his album and sellotaped there. In the black and white image, Mum is about 20, wearing a white debutante dress and holding a bouquet of flowers.
More than 50 years later, Mum lies in bed, curled up in the fetal position, as though she wants to be with her own mother in heaven. Mum has wrapped her arms around herself. She wears an unfamiliar, well-washed night gown, pulled from the rest home’s communal laundry and mistakenly put in her drawers.
Since Dad’s last visit, her frame has shrunk three kilograms, so she now weighs 37 kilograms. Her brain has shrivelled like a dried-up walnut. What is left is overrun with plaques and tangles like weeds.
“Hello!’’ says Gay, another Filipino nurse, as she knocks on the door. She logs into the iPad she carries into residents’ rooms. “Your mother laughed the other day,’’ she says.
Did she? It has been a couple of years since I’ve seen Mum show a hint of anything.
Gay tells us how often Mum has eaten. She tells us sometimes Mum chokes on her food, or holds it in her mouth, as though savouring it, even though she has forgotten how to taste. They feed her with a spoon, her mouth opening and closing like the injured baby bird my sister fed with a dropper when we were kids.
A plastic hospital cart sits beneath the crucifix. On it, there’s a toddler sipper cup half full of a liquid, Ensure, made out of a powder stored in cans towering in a resthome cupboard. Ensure is a strong multi-vitamin and calorific drink, given to the ill when they can’t eat properly. Ensure is one of the reasons Mum is still alive, and possibly why many of the other hospital residents in this wing are too.
I’ve said before that we should stop the Ensure, but Dad won’t have it, and the rest home is cautious too. Some days I’m not sure either. Without it, Mum might starve, and she can’t tell us she is starving.
I touch Mum’s arm through the bedspread, stroking it. We’ve lost Mum more and more each day – apparently my family is suffering what is known in the dementia world as “ambiguous loss’’.
Her dressing table is already jammed, but I add a couple of framed photos of Mum and her siblings taken before she got ill. A bunch of flowers has curled over, dropping brown, faded petals on the carpet. I take them out of the vase and throw them in the bin.
Often, our visits seem pointless. Mum is not Mum, but she is. We could stay for minutes or we could sit with her for hours and she wouldn’t know, like the game of eeny-meeny-miney-mo we played as kids. Each minute spent with her, hearing her snore, then occasionally groan, feels like I’m being tortured. She can’t tell us if she’s in pain.
Lately, she has been appearing in my dreams. Mum plays the piano, Mum pulls my daughter’s hair into plaits, Mum’s face beams and she laughs, throwing her head back. In my dreams, Mum is never lying in this bed, staring at the vanilla ceiling.
Gay comes in to tell us our half hour is up. We have no choice whether to stay or go.
“Bye Mum,’’ I say, leaning over and giving her a kiss. Each time, I wonder if it’s the last time I will kiss her before my mother becomes another closed door with the name tag gone.
Hi Doug, just to let you know that Mary has a red mark on her forehead, right side. Not sure how she got this but it’s not bothering her in any way. No confusion upon palpitation. Also just consumed all her meal at tea time. Just so you’re aware. Thanks. D.
Dad stores his ripe avocados in a bin in his fridge. They’re brown, fully ripened, some puckered with dents and marks where the birds have got them. He pulls a few out of the chiller and puts them in a bag for me to take home.
I think of the late Lecretia Seales and her husband Matt Vickers, who fought for the right for people like Mum to end their lives when they’re terminally ill. At the election, New Zealanders will decide whether they agree by voting on the End of Life Choice Bill.
Lecretia was just 38 when she was diagnosed with brain cancer, and four years later, was told there was nothing more doctors could do for her. She didn’t want to end her life, as that would have been suicide. But the alternative was to suffer in the last months of her life, and she went to court pleading for a physician-assisted, gentle end to her life.
There are so many stories like hers, of New Zealanders grappling with the same pain as they face their own deaths or the deaths of those they love.
I didn’t know 14 years ago that it would turn out this way for us. When Mum’s fingers still tinkered along the piano keys and she clipped roses in the garden, I couldn’t imagine it.
What would Mum want now? We never asked her before it was too late, and that’s one of my biggest regrets. I believe, though, that my staunchly Catholic mother wouldn’t want a planned death. She would think it is God’s will that she lies in a bed, her mind gone. When her God wants her to join him in heaven, it will be time. If I was in her place, I would want to end my suffering and my family’s suffering too, but I know my mother.
I slice an avocado open, pulling the seed out with a sharp knife. The smooth flesh is perfect, a concave lime green like a half moon, as though the outside is irrelevant, and it’s what’s inside that matters.
I scoop a piece of avocado out, holding it in my mouth. It zings, exploding with flavour. I hold it there, till the avocado slides down my throat. I send a thought from Dad’s house to Mum in her bed: Wait for me when it’s time. You were there for my first breath, and I want to be with you for your last.