Writing by Michelle Fitzgerald // illustrations by Ciel Chen
One hundred tiny plastic sushi soy sauce fish tumble from the butter compartment of an empty refrigerator.
A gallery of faded post-it-note reminders line her walls.
Dementia lives here.
May 2017
It’s been one month since my husband and I were married. We planned the wedding in record time, racing against the imposed clock that is my mother’s Alzheimer’s. It’s been two years since her diagnosis of early onset Dementia at the tender age of 68 and her decline up until this point, has been slow and steady.
We planned the celebration in less than three months so she could attend while she was still relatively cognisant. I am so grateful that she could share in the joy of the day and I look back at those photos with tenderness at who she still was in that moment – funny, fun, full of life and joy. These days those moments are fleeting and few and far between. The fog of dementia might roll in slowly, but it blankets those you love at a speed so rapid, it can make your head spin and disorient those in its wake.
An aged-care assessment has allowed her to access a ‘Home Care Package’ and she is well-supported with a roster of carers to ensure her physical and emotional well-being.
This has not been without its challenges.
A recent development has been Mum’s preoccupation with dying and obsession with signing up for life insurance packages. Her record is signing up to eight at once, all siphoning money directly from her bank account, bleeding this confused pensioner dry. I’m not sure when the humour of these past dementia-specific occurrences will reveal themselves – it’s hard to find amusement in the myriad ways people, companies and corporations prey on the elderly.
One particular day, Mum found herself in hospital because one of her carers, doing a routine home visit, suspected that she had taken an overdose of her medication – a combination of antipsychotic and antidepressant tablets. The carer couldn’t find the missing tablets, so Mum was rushed to the hospital to have her stomach pumped and was admitted until a social worker deemed her living situation safe enough for her to be discharged.
It would later be discovered that Mum had not overdosed on her medication. She was, in fact, squirrelling them away in an array of increasingly creative places, like the bottom of her face cream jars. It transpired that she was regularly being visited by some Jehovah’s Witnesses, who convinced her that her medications were unnecessary. And so, the secretive stashing began.
On the phone with the social worker, I am faced with a choice. Mum can no longer live independently. The options are limited; increased home care – though not including overnight care – going into an aged-care home, or a third option that I suddenly blurt out to the social worker, having not even discussed it with my husband: she moves in with us. As the unrehearsed words fall from my mouth I feel an evenly split mix of relief and fear.
The social worker is delighted and begins a rigorous interview immediately to determine my suitability as her primary carer. I’m eventually deemed suitable, with additional home care support put in place for Mum, and I hang up the phone. I sit in silence, flummoxed at all that has happened in 24 hours.
I grab my phone, take a deep breath, dial my husband’s number, and pray he’s had his second coffee for the day.
February 2015
‘What are all these Mum?’
I’m holding fistfuls of plastic sushi soy sauce fish as they awkwardly plop, one by one, like a bizarre catch of the day, from the butter compartment of her fridge. Mum shifts anxiously from one leg to another, as a vacant stare consumes her face. We’ve been here before. But last time it was salt and pepper sachets, hundreds of them, neatly stacked in her bedside table drawer. When I questioned her then, we both laughed at the sheer absurdity of her careful curation of seasonings.
The sushi soy sauce fish collection feels starkly different this time. No one is laughing. Least of all Mum who is now wearing a pained frown. She doesn’t say a word, just continues looking through me into the distance. I want to shake her. Slap her. Scream at her. Of course, I do none of those things, instead I simply hold her.
Mum collapses into my arms, quietly convulsing as the tears fall.
‘I don’t know what I’m doing. I don’t even know who I am anymore. What’s happening to me?’
As I don’t hold any answers, I stifle my reply. I just hold her tighter as my own tears fall.
‘We’ll figure it out Mum…’
I try to speak with assurance, but my voice cracks as a sob escapes me.
‘My darling girl don’t cry! Everything will be OK. I promise…’
Mum squeezes my hand as she has done countless times before when I’ve needed comforting. I realise she’s already forgotten about the sushi soy sauce hoarding. Her thoughts come as quickly as they go. Mum gives my hand another gentle squeeze.
If I’d have known that this was one of the last times I would ever be mothered by my own Mum, I would’ve held her hand for longer. Tighter. I would’ve gently traced the wrinkles and dents from her palm to the top, over and over; a map of memories, a topography of time. I would’ve gripped her hand fiercely.
And never let it go.
May 2018
Piss and shit. Shit and piss. It’s been twelve months since Mum moved in with us. There are things you predict will happen when you agree to care for a Dementia patient. Misplaced items. Repeated questions. “Sundowning” or late-day confusion.
Scooping out floating logs of adult shit from tepid bath water is not what I saw on the horizon.
Mum still has regular carers come to our home to take her for social outings. But she now aggressively refuses to engage with their attempts at personal care; bathing, showering and toileting. By default, these have become my responsibility.
I undress Mum in the bathroom and wince at her crooked skeletal frailty. She has severe scoliosis (curvature of the spine). Hunched over and naked, she clutches my hand like a child as I try to lower her into the steaming bath water.
‘Thank you, my darling. For all that you do. I don’t remember much. But I remember that I love you.’
As I close the door behind her, I sob. A guttural cry from the depths of my broken heart. I force myself outside into the fresh air, inhale the crisp cold sharply and let out a howl. High-pitched and fervent. It disappears into the darkness. Shadowlands of loss and love. Time and memory. Where everything begins and ends.
September 2020
After years of trying and one miscarriage, I am twelve weeks pregnant. At the start of the year, just before the Covid outbreak, we transitioned Mum into an aged-care home. She had lived with us for three years. People told me I would know when I had reached my limit. They were right. My limit was the second and third year of toileting, showering and feeding my non-compliant, sometimes even violent mum. My limit was my own rapidly closing fertility window. My limit was a marriage tested to the absolute brink. At age 42, just months after Mum went into permanent care, I am twelve weeks pregnant. Turns out that being the primary carer of a seventy-year-old woman with dementia is not conducive to falling pregnant. Who knew?
I make my way to visit her, with a Polaroid-sized ultrasound in hand and the hope that she is having a rare episode of clarity. I am unaware at this moment that I will end up sharing this news with her countless times over the coming months. Every time is the first time. Sometimes the announcement would be met with utter celebration. Other times with cold indifference.
On this particular day – my first time – it is a joyous celebration. I hold onto this moment with a white-knuckle grip, tuck it away in my heart and try to remember it on her worst days.
March 2021
I’m about to become a Motherless Mother. At moments throughout this pregnancy, I’ve been winded with the sharpest sense of loss and grief at her absence. Physically she is still here but she is fading fast. It’s too easy to romanticise what having her by my side on this journey would’ve been like. What a privilege to be able to yell, and cry at your mum to, ‘Shut up and let me parent my way!’ Something I will never get to do.
When we first told her our pregnancy news, she cried and said, ‘Oh you will be wonderful parents!’ And I believe her. My mum made many mistakes along the way, some with far-reaching consequences and trauma. But she did the best she could within her limited means, amidst her intergenerational trauma, mental health issues and emotional capabilities. Even if, at times, her best was not good enough.
I choose to show my mum the same compassion and forgiveness I hope my own daughter will show me in the future, for the mistakes I’ve not yet made.
May 2021
It’s been 6 weeks since I gave birth to my daughter. My husband, daughter and I drive to Melbourne from Geelong to visit Mum in the care home. She has been in a hard Covid Lockdown for months and all our limited communication has been via Zoom. When I see her, I am winded by shock. The lockdowns have not been kind to her. She is ghostly. Coarse silver hairs protrude from her chin. When we enter her room, she stares blankly. When she speaks, her mouth twists to form non-words –noises almost like words.
I gently place my daughter into mum’s arms, terrified she will drop her. She holds her comfortably, arguably better than I hold her myself. She gazes lovingly at the baby before her, suddenly snapping into a sharp moment of coherence.
‘I know you. I’ve always known you! I’ve loved you forever.’
An inhuman sound rises from my depths. So animalistic I scare myself. I scare everyone. It is high-pitched and fervent. Ancient and ancestral. It disappears into the fluorescent room. This room of loss and love. Time and memory. This room of beginnings and endings.
I quickly pull myself together.
‘This is Thelma, Mum. Our daughter. Your granddaughter.’
