In 2013, my mum Lenore was diagnosed with a rare neurodegenerative illness. This sickness – a sadistic killer – was resolutely incurable. “It’s the worst-case scenario,” said the neurologist, who had a model of a human brain on his desk. “Like having Parkinson’s and Alzheimer’s at the same time, for a long time.”
Uh-huh: this explained mum’s escalating physical clumsiness, mood swings and memory lapses. Alcohol was merely the coping mechanism, not the cause. She would gradually lose the ability to chew food and string coherent sentences together, and eventually the capacity to speak, move or ultimately breathe. “I just want to stay at home,” she said. And then: “Until the end.”
Mum was 59. I was 21. We shared identical hazel green eyes. Hers were wet. Mine were dry. I wasn’t trying not to cry. But I was on a first name basis with worst-case scenarios. And there were just so many bloody logistics to consider. “You might need to think about a nursing home placement,” said the neurologist. “And sooner rather than later.”
That summer, I floundered south-west from Brisbane to my hometown of Toowoomba. I discovered a new to-do list on the fridge: book a haircut, buy a lotto ticket, and sign up for a funeral plan. Often, I found mum standing at the back door staring into the 3am blackness. “I forgot what I want,” she said, a terrifying mixture of tenses for someone traditionally so literate.
Richard Fidler once remarked he knew of only two people who enjoyed reading parliamentary hansards: Gough Whitlam and my grade nine dropout, autodidact mother.
Mum believed in a social safety net, because she knew how easy it was to slip between the cracks. That’s why she decided to become a foster carer after half-a-dozen miscarriages. She and my dad fostered hundreds of kids, including five permanents. Mum took the hard cases without reservations, such as my sister Hannah. She was born in the bathtub of a three-star motel in New Zealand to mentally ill parents on the run from Australian police.
My mother fell pregnant a few days after Hannah’s arrival. It was her first pregnancy that made it past the three-month mark. Miraculously, mum had me at the age of 38. At night, she checked my cot like it was a safe containing a million-dollar bill. Hannah was two years older than me, but the two of us became best friends. Mum colour-coordinated our second-hand outfits, as if we were identical twins.
By the time I reached high school, the whip-smart foster carer from my childhood was growing irritable and ham-fisted. Most of the changes had been slow and attributed to alcohol consumption. After the diagnosis, I realised that my stone-cold sober mother was undeniably dying. Her feet and shins were chipped with sores from where she’d kicked the bricks. Mum qualified for a disability support pension and Meals on Wheels, but not the NDIS. My siblings lived interstate or hours away. I was barely capable of looking after myself at the best of times. Now I was medically responsible for a dead woman walking and frequently falling.
The feet wounds grew infected and turned her delirious. One day, she couldn’t leave the couch in the lounge room. Mum pleaded with me not to call an ambulance, dreading a date with a nursing home director. But I was on the brink of breakdown after just a month of providing utterly substandard care. So I called triple zero. Mum wailed like a baby on the way to the hospital. This was the direct opposite of childbirth. We both knew that she wasn’t going home.
“Who’s going to look after Barnesy?” she asked, referring to her adopted mongrel dog named after Jimmy Barnes. Mum spent a month in hospital. My sister Hannah – a psychology student – came back from Melbourne for Christmas. We donated mum’s novels and furniture to Lifeline – where she’d volunteered – and took the unwanted stuff to the dump. I rehomed Barnesy. An enthusiastic real estate agent hammered a “For Sale” sign into the front lawn.
Unbeknownst to mum, the hospital provided brochures for nursing homes. I chose what was supposed to be the best of a bad bunch. There was a room available, and the hospital needed her bed. So I hastily signed my mother’s life away. Mum moved into the aged care facility a few days before her 60th birthday. Hannah baked a cake. The patient stared vacantly through cobwebbed windows into the unweeded courtyard. “This is nice,” she said unconvincingly.
That day, a light expired in my mother’s eyes. She later came to Hannah’s wedding, held grandchildren, and watched me embark on a writing career. In family pictures, mum covered twitching lips with a slender hand, pale and veiny and forever trembling. I was crying on the inside in all of those smiling photos. We made no new memories together untainted by pre-emptive pain.
***
My mother picked a particularly inhumane epoch in Australian politics to get sick. Her underfunded nursing home made little effort to assist patients who couldn’t get themselves to group activities. One-on-one time with carers was limited. She didn’t mesh with the much older but less evidently demented patients, so ate dinner alone in a wood-panelled room while rapidly deteriorating.
As many in the aged care sector know, you can pinpoint John Howard’s 1997 Aged Care Act as a turning point. It led to widespread privatisation of the sector. Nursing homes were no longer legally required to roster a registered nurse 24/7. Beforehand, a typical 60-bed nursing home received funding for 308 hours a week from registered nurses. Within a decade, it had declined to 198 hours. By 2021, it was 168 hours a week, wrote Rick Morton in the Saturday Paper.
Julia Gillard’s government hastened the privatisation of nursing homes, while trying to increase the wages of aged care nurses. In 2013, Tony Abbott abolished those proposed pay rises. He also cut government funding for patients with dementia-like symptoms, such as my mum.
In 2016, mum was transferred to the high-care section. She received a level of attention that might’ve been the bare minimum two years earlier. There were purple bruises on her protruding hips from slipping over. I was routinely notified that she’d been found lying on the linoleum since overnight. Mum was sometimes rushed back to hospital because no registered nurses were present.
Mum never complained once. Not about the shithouse dinners, or noticeable lack of staff, nor their ignorance about her condition. Even then she sided with the employees, most of them working-class migrant women who weren’t acting maliciously. My mother could see that they were overstretched, underpaid, and largely untrained to deal with such a debilitating impairment.
My sister Hannah sent escalating complaints. Nothing much changed. The neglect existed in a grey area. There were no gross hygiene breaches or acts of physical abuse. There just weren’t enough staff for the number of patients, or staff with the requisite expertise to prevent unnecessary hospitalisations.
By then, Hannah was a neuropsychologist in the public health system. She’d moved to the Gold Coast with her husband Jay, a physiotherapist. In 2018, they found a new nursing home for mum near Burleigh Heads. Her quality of life drastically improved. Partly because we could afford to pay the extra weekly cost. Partly because staff ratios and catering were better. And largely because my mother had a daughter and son-in-law uniquely qualified to wrangle with the opaque aged care and disability sectors. How many people in our situation would have just given up, or not been able to make that much of a difference?
Whatever the case, there were no miracles. My mother’s skin grew sickly, cheeks gaunter, and eyes more haunted. In July 2018, Hannah brought her to the finish line of the Gold Coast marathon, which I completed in three hours and thirty-three minutes. Mum was four knots of skin and bone in a wheelchair. But I could detect a wry smile and hint of pride.
“Nobody’s going to forget what you’ve done,” I whispered at the end of my final visit, after a 30-minute hug. “I love you, Mum.” My mother didn’t want to let go. “I love you more,” she implored me. A few days later, she died in her sleep. She soon received approval for the NDIS. It was too late.
***
It is truly difficult to fathom the institutionalised cruelty of Australia’s aged care system. Politicians continue to make euthanasia elusive for people with neurodegenerative illnesses, while underfunding the nursing homes where many of them rot away.
A few months after mum’s death, Four Corners exposed severe neglect within aged care. Scott Morrison announced a royal commission. It discovered that 39.8% of patients suffer abuse. There were stomach-churning accounts of malnourishment. A grieving daughter recalled discovering maggots breeding in her mother’s heel. A specialist estimated fifty sexual assaults a week occur in nursing homes. This was before the pandemic exacerbated staff shortages and the isolation of patients, hundreds of whom died during Covid outbreaks.
Last week, Anthony Albanese released an aged care policy promising to improve staffing, accountability and nutrition at a cost of $2.5bn over four years. Labor’s plan would mandate the 24/7 presence of a registered nurse, and mandate 215 minutes of care per day, per patient. Albanese also promised to support the wage claim of aged care workers. Australia barely pays minimum wage to the people who deal with disability and death on a daily basis. A pay rise will cost billions of dollars. But there is no other way to attract skilled personnel back to the sector.
“We are going to put the nurses back into nursing homes,” said Albanese.
Where, the Coalition asked, would Labor find $625m a year? Let alone the extra billions should the Fair Work Commission award workers a pay rise. Yet Morrison also claimed he would respect the commission’s decision, without outlining where the funding for those pay rises would come from. Labor’s policies should be critiqued. But it was grimly predictable this was the budget announcement provoking the shrillest accusations of economic illiteracy.
“If you cannot manage the nation’s finances then you can’t pay for aged care,” said Morrison in Question Time.
Howls of outrage about Labor came from the same government that effectively donated $5.5bn to the French government so they could spend potentially $171bn on American nuclear submarines. The same government that funnelled $10.3bn to fossil fuel subsidies in 2020/2021. The same government that squandered approximately $38bn on jobkeeper payments to profitable companies. The same government promising tax cuts for wealthy Australians that will plunder $184bn from the budget over a decade.
Treasurers and defence ministers are free to piss money up against the wall, particularly Liberal ones. But those who advocate spending on childcare, education, aged care and the NDIS are framed as bleeding heart socialists, despite the vast emotional and economic dividends from investing in them.
***
Eighteen months after she died, Hannah named her first child “Lennie”, short for Lenore. Hannah works for a clinic supporting children with disabilities in Alice Springs. She is like my mum on intellectual steroids. Lennie believes that her namesake is smiling from the dusty sky during sunrise and sunset. “Morning, Grandma!” Lennie grins. “Night-night, Grandma!” she sings.
No grief, just love.
Mum dedicated her life to sheltering children who couldn’t protect themselves. Multiple times she broke intergenerational cycles of child abuse and poverty. Lennie is the direct beneficiary. In sickness, my mother received no such sanctuary. She was always going to die. But she didn’t need to suffer so horrifically in the process. Governments can’t legislate against the guilt I feel about her experiences. But Australia – one of the richest countries on earth – can afford to pay aged care workers a fair wage, and invest heavily in the development of registered nurses for the aged care system.
More broadly, our aging population can’t enjoy everlasting tax cuts, while also treating the elderly and disabled with basic dignity. Something must give. The question is whether leaders – and the voters who elect them – are willing to sacrifice tax cuts for the wellbeing of complete strangers.
It is much easier to look away. Life is hard enough without confronting the suffering of others. But we must bear witness to these indignities. The people most affected by neglect are incapable of protecting themselves. And one day they could be us.
