Alzheimer’s Stole My Mother

The grief and laughter in caring for a mother with a cruel diagnosis.

November 2019

My 70-year-old mother is standing before me, naked, as I delicately try to trim her pubic hair in the bathroom. Sporadic incontinence means toileting debris is now getting caught “downstairs” leading to all manner of unwelcome infections. She no longer allows her support workers to facilitate her personal care, so it has become my full-time responsibility. 

I’ve put on some Neil Diamond to calm us both during this intimate ritual and Mum is Sweet Caroline-ing with gusto, not a care in the world. My heart is pounding and my hand is rattling with each snip—anxious I’ll cut her—as I try to stifle my tears at the sheer magnitude of her rapid decline. 

Suddenly Mum grips my arm. Startled, I drop the scissors and quickly wipe away the tears that have escaped me.

“Thank you my darling. For everything you do. I couldn’t do this without you.”

My mother weeps quietly.

I squeeze her hand in return, speechless at the weight of it all, speechless that she had a moment of clarity. Speechless that this is it. The hard bit. I knew it was coming and here it is. We are smack bang in the thick of it.

The fuckery of fucking Alzheimer’s.

How did we get here? It’s been four years since her official diagnosis and three years since she moved in with me and my husband. Her decline within the last year has been severe. 

My sorrow is a galaxy. The weight of it all suffocates me. I can’t catch my breath. Just as panic and grief threaten to swallow me, Mum pipes in with an overzealous operatic chorus of “You Don’t Bring Me Flowers” and I simultaneously whelp in fright and almost shit my pants. 

I burst out laughing.

Mum joins in with my laughter, though she has no idea what’s so funny.

Together we laugh. We laugh until we cry. 

Manically, I grab the scissors and cut a fistful of my own hair.

Mum stares in horror, until she bursts out laughing again.

Time stands still. I try to capture this moment and tuck it away in my heart, for fear of forgetting. 

I’m not sure how long we hysterically roar for, but by the end of the night I have a thumping headache and a hacked-off chunk of hair. This makes wearing my usual ponytail quite the challenge in the weeks to come and just as difficult to explain.

November 2017

It’s been two months since Mum moved in with my husband and me. This sunny Saturday morning, I walk downstairs and am greeted with an unusually cheerful “good morning!”

Within seconds I notice an eclectic selection of items sitting on the kitchen bench. It’s 8:30 a.m. and Mum has poured herself a generous pint of pinot grigio. Next to that is a coffee mug of boiling hot water, with a plump dollop of Vegemite floating in it, five unwrapped cheese singles, and a half-eaten packet of frosted donut-shaped dog-worming biscuits. At her feet are three very neatly packed belongings perfectly lined up in a row.

“Bottom’s up, Mum! It’s 5 o’clock somewhere, right?!” I say jokingly.

A puzzled look befalls Mum’s face.

“Where are you off to?” I ask, pointing at her bags.

“Well, I guess it’s time I go home. You’ve been so generous to let me stay this long. I don’t want to overstay my welcome.”

“Mum, this is your home now.”

She bursts into tears.

“Oh darling. That’s too much. Are you serious?”

“Of course, I am. You live here. With us.”

The quiet sobbing continues. Neither of us are aware in this moment that this will be a conversation repeated at least twenty more times in the future.

“Thank you darling. Thank you for putting a roof under my bed.”

A moment of silence hangs in the air between us. I burst out laughing. Mum bursts out laughing. 

There’s mania in these laughs, but we continue, regardless. We laugh until we cry. We cry-laugh and laugh-cry until it’s entirely indistinguishable whether we are happy or sad. Joy and madness, sitting side-by-side, with each snort. Before long, joy and madness will become comfortably familiar bedfellows.

“Now let’s hope you don’t get explosive diarrhea from those worming biscuits!”

Together we laugh even harder. Full-body, convulsing, multiple-chin laughs. It’s the hardest we’ve laughed since she moved in. I hold onto her and this moment desperately. Urgently. I try to snapshot it with my mind’s eye as accurately as possible, keenly aware that the mind is not always a reliable memory storage facility. I will revisit this moment countless times in the future, when Mum can no longer speak. 

When she looks at me coldly. 

Vacantly. 

When she is violent and aggressive.

It won’t be long until I miss this version of Mum at this precise moment.

The warm, silly, kind, grateful, and affectionate Mum. My real Mum. 

Not the imposter Mum I’m met with most days now. 

Dementia, I don’t know what you’ve done with my real Mum, but I beg of you, please return her.

Just leave her at the door. No questions asked.

December 2017

A flushed and sweaty Mum surfaces from a nap at dinner time on this 42-degree Melbourne summer’s day—that’s over 107 degrees Fahrenheit—dressed head to toe in winter wear, including Ugg boots.

“Hey Mum, you can’t wear Ugg boots in this heat! Or that long-sleeved top! You’ll get heat stroke.”

“OK lovely, I’ll pop my fleecy pajamas on then.”

“No, pop on the summer PJs I laid out for you on your bed.”

 “And my Ugg boots?”

“No. This is now an Ugg-free household. Just for summer. Pop on your slip-on sandals instead.”

“You want me to wear sandals with my ugly legs and feet?” Mum laughs incredulously.

Mum has always had a quietly confident level of vanity, smothered with a generous dollop of body dysmorphia. She has always been strikingly beautiful and still is, but I can’t help but be surprised at her continued self-loathing in her current physical and mental state of decline.

“Would you rather show off your feet and legs or die from heat exhaustion? We can’t have you dying from overheating. Can you imagine that on your tombstone?”

“She died doing what she loved…wearing Uggs,” my husband pipes in.

Mum laughs heartily, but with a wild twinkle in her eye which tells me this Ugg boot battle has only just begun.

July 2014

I’m waiting for Mum at the train station. Her train from Brisbane came in 15 minutes ago, but she is nowhere to be seen. I search up and down the platform on this blustery winter’s day in Melbourne.

It is icy and desolate now, all the passengers have reunited with their loved ones and left the platform, making their way home at 10 p.m. on a Tuesday. I have a full day of teaching tomorrow. I’m in the middle of a production—the production Mum was supposed to see, the purpose of her visit.

Panicked, I call her mobile. Three rings later she answers. 

“Mum, where are you?”

“I’m about to hop into bed, lovely. What’s up?”

“What’s up? I’m waiting for you at the fucking freezing train station!”

The oddness of Mum’s vocal expression is impossible to decipher. Silence follows.

“Mum!”

“Darling I don’t know what to tell you…”

The air that hangs between us is thick and stifling.

“So, you’re not coming?”

I try to hold back my tears but a garbled sob escapes me. I’ve run out of fingers to count the amount of times I’ve been let down by my mother. 

“I’m not coming.’”

“You’re not coming to see my show?”

“I’m not coming.”

The vagueness of Mum’s replies are kryptonite. She sounds far away. Detached. As if standing down the other end of a long, cold, shadowy corridor. Far beyond my reach.

“You were supposed to stay for a month. I’ve organized everything.”

I am dumbfounded. Mute. Hot tears burn down my icy cheeks. 

“I’m not coming…” Mum mumbles distantly, as if holding the phone away from her now muffled voice. 

Seconds pass. I disconnect the call. 

I crumple into the nearest bench and cry. 

The biting wind nips at my gloveless fingers.

I wail into the darkness, grateful to be alone on this empty platform.

July 2018

Somehow, I have convinced Mum to go swimming. In public. In a bathing suit. At our local swimming pool. At the ripe old age of 69. Her slim frame is frail and hunched, crooked with scoliosis. Her weathered skin folded in well-worn wrinkles. I cannot remember the last time I saw her in a bathing suit, let alone actually enter the water. Holding hands, we splash and squeal in the heated wading pool like children. This is the memory. The one. It’s my favorite moment since I started caring for Mum.  

In the future I will recall this memory and cry with joy. This hideous disease has taken so much, but not this. It can’t take these moments. These moments and the people we love, live on. 

They live on in the memory and the telling of the story.

A powerful act of rebellion against the cruelest disease I know.

April 2015

Mum is visiting from Queensland. This time, thankfully, she made it all the way by train for Easter, staying with my partner and me in our townhouse in Melbourne’s West. She arrived last night. It’s Saturday morning and she’s just risen for breakfast.

I’m sitting outside in our courtyard, enjoying a rare moment of Victorian sunshine. Mum stands at the entryway of our double-glazed sliding door, hovering. 

“Good morning, Mum! Did you sleep well?”

Mum continues hovering, without a reply. There is a pained grimace across her face. 

“Did you sleep OK, Mum?”

She nods slowly and strangely. She is far away, yet only two feet from me. I see tears trailing her cheeks. She doesn’t speak. Her stare bores a hole right through me. 

Inside I am panicking. All manner of possibilities run through my mind. 

Stroke? Bad news on the phone?

I ask her questions of this nature, but she simply stares into the distance, aphasic.

Without a word, Mum turns around and walks back into our spare bedroom.

Minutes later, when I knock softly on her door, she is tightly tucked up in bed, blanket under her chin, eyes closed. 

I’m not certain she’s sleeping, but she’s checked herself out of any and all social interactions. 

I wonder if she’s coming down with something—not unusual as she acclimates to the Southern Hemisphere—or if it’s something more.

Something tells me it’s more.

Much, much more. 

Within a few days, I’ll be completely sure. 

March 2019

Mum has returned, unexpectedly, from a social outing with her support worker. The thick smell of fresh feces blasts my nostrils as she enters the house. She’s shit herself. I have no time to process what’s happening in front of me, because the longer I take, the longer I breathe in the stench. My body reacts involuntarily, violently.

I have no choice but to strip her, bag-up her shit-saturated clothes, and pop her in the steaming hot shower. I steal a second of time to rub tiger balm under my nostrils, to stop myself from gagging and to ease her humiliation.

I hose down her frail, twisted, and gaunt body in the shower as a waterfall of shit circles the drain. Squishing thicker bits of excrement down the plug hole with my gloved hands, it’s impossible not to dry-heave, tiger balm and all.

Mum grips my hand tightly, trying to balance herself on the slippery shower surface. She is humming to herself, staring off into the distance. I try to make out the familiar tune. It is “The Tracks of My Tears” from one of Mum’s favorite soundtracks—The Big Chill.

The lyrics return to me:

So, take a good look at my face

You’ll see my smile looks out of place

If you look closer, it’s easy to trace

The tracks of my tears 

I sing along with Mum’s discordant, haunting humming.

Mum smiles warmly, as a steady stream of tears tracks down my face. 

I don’t think I can do this for much longer.

I don’t want to be Mum’s caregiver anymore. 

I don’t want to mother my own mother anymore.

I just want to be her daughter. 

June 2021

I’m 42 years old. I’m in the middle of changing my two-month-old daughter’s nappy; a Code Brown, category five shit storm. Speckles of shit dot my face. I don’t recoil at the stench. I don’t recoil at all. 

Caring for her is the most natural thing in the world. 

I think back to caring for Mum, who now resides in the Alzheimer’s wing of the aged care home. I got pregnant with my daughter months after transitioning Mum into care, after years of trying to conceive. 

The minute I was released from the burden of Mum’s care, my body did what it needed to do. 

Unassisted. Naturally. 

I am not the same woman I was, caring for Mum. 

The sorrow I feel at knowing this, thwacks me in the heart.

I wonder if Mother-me would have been a better carer for Mum. 

I know the answer. This truth hurts my heart.

I miss my Mum, too much, too much. 

Her Present absence.

Her Absent presence. 

Mothering without my mother is the strangest grief I’ve ever known.

But, I count my lucky stars that my daughter is my new home. 

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