A deeply personal journey

About Ros Thomas

Ros Thomas is a journalist and author who has long championed for the elderly and isolated. She holds a special interest in Aged Care, Alzheimer’s disease and dementia and advocates for carers across a range of community and legislative roles.

This is a deeply personal story which may be confronting and painful – but unfortunately, parts of this story will feel very familiar to those who are living with this disease.

The story was one of three finalists for Best Feature in the 2023 Oz Media Awards and has evoked an outpouring of reaction from readers who have been sincerely moved.

Ros has been awarded a 2023 Churchill Fellowship for her research into chronic loneliness.

“The carers, partners and families of Alzheimer’s patients are one of the most at-risk groups for chronic loneliness,” says Ros. “The US Surgeon General has recently declared it ‘the next global pandemic’ – with isolation and poor social networks on a par with smoking and obesity for causing cardiovascular disease.”

 

Lost and Found

It wasn’t until I started looking after my mum that I realised that there are only four kinds of people.

There are those who are carers.

There are those who’ve been carers.

There are those who will become carers.

And there are those of us who will one day need a carer.

I never expected to become a carer.

In her old age, my mother always planned to throw herself under a bus. She was adamant a snappy exit was far preferable to the long goodbye.

“If I start losing my marbles,” she told me on the night of her 60th birthday, “then I’ll take myself out.” I was 30 then. And horrified.

The number 28 bus was Mum’s contingency plan in case her golden years were to be robbed by senility. Her family had dibs on dementia. Her only brother, her mother, her granny, one uncle, two aunts. Rarely did anyone die of anything else.

There were few problems we couldn’t solve, my mum and I. Her dementia was one of them. Naturally it found her, just as I feared it would.

“It’s Alzheimer’s,” her doctor said, patting her knee.

“How patronising,” I thought, until he patted my knee and I burst into tears.

Mum and I drove home together in silence, the air between us thick with thoughts we didn’t want to say.

Dementia was the dirtiest of all words. She refused to become an accommodating host.

“I have a neurological condition,” she told her friends. “But it’ll pass.”

“Don’t worry darling,” she’d say to me with unnerving repetition. “You know my end game. I’ll be taking the short cut thanks, not the scenic route.”

We’d snort, the two of us. She still remembered our little bus joke.

 

A swift decline

Her disease wasted no time. The decline was swift and unforgiving. In 50 years of daughterhood, I’d rarely seen my mother anxious. She began to fret constantly about trifles: the whereabouts of the garage remote, her car keys, why the fridge was open, who’d hidden her shoes. She side-swiped a parked car, then collected a moving one at a give way sign. One afternoon, she abandoned my toddler daughter in the playground and walked home without her.

“She was having a tantrum and she needed to be taught a lesson.”

I shouted at her for the first time since I was a teenager.

The next day, she shouted at me when I told her the kids couldn’t go in the car with her anymore. My life began to unravel almost as fast as hers.

That first year, I watched her slide into helplessness with disbelief. I wanted to pretend it wasn’t happening. I wanted to be set free from the burden of being an only child. My feisty mother, a single mother of the 1970s, a woman who at 75— was teaching her grandsons to play footy— was dependent for the first time in her life. She was struggling to dress herself, wash her hair, make a cup of tea.

In her second year of Alzheimer’s, I knew I had crossed into a parallel universe. I was now a full-time carer. The woman who was my mother had become my fourth and most demanding child. I couldn’t cope. I quit my newspaper column, left my 25-year career behind and went into mourning for my creative self.

I was suddenly invisible. My new role was carried out mostly indoors, unseen and unnoticed. I felt isolated. At times I felt lonely, exasperated, unappreciated and exhausted. And I faced the strangest and most painful of dilemmas because she and I had traded places.

I collect her one day and we take off for lunch in Kings Park. She is wearing a man’s jumper several sizes too big. A pair of gardening shorts balloon around her small frame. She has them belted at the waist like a paper bag but the outfit screams of madness. I debate whether to make a joke of it. In the end, I say nothing. But after our meal, as she pushes back her chair to stand, I note the critical gaze of other patrons as they absorb her fashion farce. I feel an overwhelming urge to protect her.

 

Month by Month

Month by month, I watch from the sidelines as small pieces of her drift away. Some she lets go without a struggle. Her mobile phone lies dead on her bedside table. She has forgotten how to dial out or accept a call. She is anxious about what the future holds, about being a burden on me, about not being able to remember her family history, about forgetting her friends. About what day it is.

For almost two years I turned my life inside out to give her the independence she demanded because for her, staying at home meant everything — her identity, her refuge, her security — but there came a time when I couldn’t guarantee her safety, and she couldn’t maintain control.

I moved her into a beautiful aged care home.

Four days later she tried to take her own life.

What followed was a fortnight in hospital, a near tracheostomy, a near stint in a locked ward at Graylands and a daughter who very nearly ran off the rails herself.

Three months later and her memory of that darkest period in our lives had been wiped clean. She was back to her gorgeous self, and now the brightest spark in her new nursing home.

On the outside, she remained a perfect likeness of my mother. The shock of snow-white hair – two cowlicks competing with a centre-part. The winning smile, the playful demeanour, the erect carriage, her body petite now but still muscular from a lifetime of exercise.

That winter, I joined her up to the local tennis table club where she became a hit with the old fellas in her tiny shorts, faking her forgetfulness by playing like Forrest Gump. We go once a week. She hugs everyone hello.

In the summer, she insisted on being taken to the beach. She’d be in the water — fully clothed — before I could stop her. She’d pull off a perfect underwater handstand and then be crestfallen when I refused to let her drive us home.

She developed an infuriating habit of poking my rear with her thumb in busy cafes.

“Tighten those cheeks,” she’d say loudly, standing behind me in the queue for coffee. “No man likes a flabby bottom, do they?” directing her question at a businessman seated with his newspaper.

He looked up at me and frowned.

I thought I might explode with rage.

One particular day she asks me over and over: “Are you happy?” until exasperated, I snap: “Yes, Ma. I’m happy. Do you need the toilet?”

I may not ever forgive myself for that one.

 

A Resilient Body

It’s summer. Another year gone by. Mum and I are sitting on the grass at Cottesloe beach. We’re having as many adventures as we can. She laughs and points at a portly man in the shallows as he springs with a shudder of white belly into a clumsy dive. I map her physique against the panorama of bodies on display. As far back as I can remember, my mum was trim and fit. Her legs were beautiful: shapely calves, a muscular groove along the side of her thigh, quads taut and smooth. On Saturdays at tennis, blokes with Bjorn Borg headbands and tight white shorts would follow her with their eyes. I wanted the attention she created.

After 85 years, my mother’s body is still a remarkably resilient and efficient machine. She’s had no broken bones, no stents or sutures, no surgical repairs. There have been malfunctions of course: thyroid, pancreas, stomach. But nothing life-threatening. And yet it’s the 2 per cent of her body mass residing in her skull that is failing her. The neuron forest of her brain is now scarred and stunted. Soon she will be imprisoned by her own incapacity to think. The vast freedoms of an independent life will be lost for good. Dementia will wither her personality and turn her into someone else. But maybe not yet.

It’s a Sunday afternoon and she is now 86. She has been in care for six years. But management is fed up with her escaping out onto the street. They tell me there’s no option but to move her into the locked ward.

“Safety comes first,” they explain. “Your mum hangs about in the foyer waiting for the automatic doors to open and then bolts out when no-one’s looking. She’s making the receptionists nervous.”

I fight them for weeks, refusing to become her jailer, defending her right to roam free inside the facility. But management are adamant she’s a danger to herself. I see the writing on the wall. Part of me hopes that she’ll make one final dash for freedom —like Steve McQueen in The Great Escape — out the doors and smack! — into a bus. I wonder if I too, am losing my mind. She no longer knows the name for a bus. Her master plan for a snap exit lingers in my imagination but has been erased from her own memory. She will not have the quick and painless finale she wanted.

She is moved into the locked ward.

I hate it. She hates it.

 

Frightened

She bangs on the door demanding to be let out. Smashes the glass on the fire alarm with a spoon. Clings to me. She’s frightened of the other inmates, their wailings and wanderings. The locked ward is another world. It will be her final address.

Six months pass.

She can still walk, but remembers nothing from hour to hour. Her hair is a mess and I know she’d be horrified if she knew. She searches my face while I make happy noises and butter her bread. I place a peeled banana in her hand and she looks at it blankly.

“It’s a banana, Mum,” I tell her. The word banana does not resonate. “You can eat it,” I say making hand gestures to illustrate what it’s for. Even the reflex action of lifting food to her mouth has been erased.

“Isn’t it a gorgeous day,” I say whenever the weather is fine. If the sky darkens I’ll say: “Won’t it be lovely if it rains.” Our conversations are circular and intensely boring. I am ashamed to say that.

“Did you go for a swim this morning?” I always ask, knowing every day starts with an imaginary dip in the ocean.

“Yes,” she says, and her face lights up.

“Was it cold?” I ask.

“No,” she replies.

“Was it rough?”

“Lovely,” she says. This is her memory of pleasure. I repeatedly remind her how much she loved swimming.

“Have a swim today Ma?” I ask again, just for something to say.

“Yep. Freezing.”

She surprises us both by adding: “Do the things you love.”

I kiss her papery cheek goodbye, then sob helplessly in the car park.

 

Daughter or Carer?

For so long I have fought this idea of being her carer. I am not her carer. I am her daughter. Over the last eight years, I have been filled with admiration for her, filled with frustration, filled with love, guilt, anger, grief, and in the last few months, acceptance.

It has taken me years to understand that my role as a carer is to soothe the worries, remove the obstacles; knit together the loose threads, the pulls and runs of an unravelling life.

If you are a carer, there will be endless practical decisions about medical care, living arrangements and financial matters. But the most important decision will be an existential one: what kind of carer do you want to be?

I knew I could be my mum’s supervisor, some kind of superior presence in her life.

Or I could be her companion.

I decided it was her doctor’s job to be superior. My role was to remain her equal.

I try to remain invisible as her carer, but ever-present as a daughter.

For me, the test of being a carer, the real test —is how to maintain the integrity of her life. It’s the test of my ability to safeguard her from becoming so diminished, so weakened or repressed that who she is becomes disconnected from who she was.

As a carer, I now know that my job is not to worry about what’s coming. It’s about making sure that service providers, hospitals, banks and shopkeepers know that I’m the person who’s making sure she remains an individual.

It’s about being a good proxy, about being a great twosome. It’s about loyalty. My loyalty to her may not necessarily produce happiness, it may at times be painful, but devotion to someone other than ourselves makes my life more meaningful.

As a carer, my ultimate goal is not a good death, but a good life, every day, to the very end.

 

View more of Ros Thomas’ work on her website.

If this story raises issues for you please call Lifeline 13 11 14 or visit their website lifeline.org.au.