WARNING: GRAPHIC IMAGES
In her final days, Dawn Weston kept rubbing her left leg and crying.
Her daughter was not sure why, and Dawn, who had lost the power of speech, could not tell her.
"I was thinking Mum had given up," Kaye Weston says. "She was 83. Her personality had changed, she used to smile but she wasn't smiling any more."
There was a bandage on Dawn's heel to treat a pressure sore and she had been losing weight. She arrived at the Chamberlain Gardens nursing home on the NSW Central Coast in 2014 weighing 72 kilograms. Two-and-a-half years later she was 48.9.
But instead of bringing in a dietician, the staff at the home simply shifted her "normal" weight range down. "It happened not once but twice," Weston says.
As a result, no alarm bells rang, no red flags were raised. Some weeks Dawn, who suffered dementia, was losing up to two kilos.
Weston complained a number of times to Chamberlain Gardens, which is run by the Christian-based Christadelphian Homes, "but they get you to feeling like you're a pain in the arse", she told Fairfax Media. She tried to move her mother to another home, but someone else was quicker and Dawn missed out on the place.
Then, on February 28 last year, the home's care manager rang. Weston's mother had been taken to hospital, she said, for a debridement of her heel, "a simple scraping away of dead skin".
At the hospital, Weston finally saw her mother's foot without the bandage. There was a cavern 2cm deep where the heel was supposed to be. She could see the bone. A piece of gauze from the bandage was stuck deep in the wound.
The bandages were not there to treat the wound, Weston now believes, but to hide it. Another pressure sore at the bottom of Dawn's back was similarly serious. Both were gangrenous.
Two weeks later, her mother was dead.
Her death certificate records the primary cause as "left heel and sacral pressure sores".
The home denied any "deliberate or vindictive" action by staff members, but Weston has a different view: "I believe someone deliberately covered up the seriousness of her injury."
By rubbing her leg, Weston says, her mother was trying to show "she was in horrific pain".
Making a bed to lie in
Nursing homes, known officially as residential aged-care facilities, are where people go when they need full-time care, when they can no longer live at home or in their retirement village. They can be large for-profit homes; private one-off or family-run businesses; charitable, church and not-for-profit homes. More than 195,000 Australians live in one.
About half of the residents have dementia. Their average age is 85. Many cannot move, speak or toilet themselves. They are among the most vulnerable people in our society. They are our parents and grandparents in the final years of their lives.
All too often, those final months or years are miserable ones.
"Over the years, aged-care residents in nursing homes have been raped, robbed, bathed in kerosene, attacked by rodents, suffered injuries or death from other residents, burned to death, strangled, cooked, melted, sedated to death, over-medicated, endured horrific infected pressure sores or choked to death," wrote Lynda Saltarelli from community group Aged Care Crisis in a recent submission to government.
We see media coverage of this then we turn away. Perhaps it's a series of isolated incidents, we hope.
Many - some say most - homes provide excellent service and caring staff. Federal minister Ken Wyatt says we have a world-class system.
But a growing number of voices are saying the horror stories are not isolated, that they indicate a system in crisis.
"Everyone thinks they're not going to get old, so no one's really bothered with what's going on in the aged-care system," says Monash University professor Joe Ibrahim.
"But we're making a bed that eventually most of us will have to lie in. So ... if you don't want to enjoy your life when you're 80, then we should continue to do nothing."
Kaye Weston made a complaint about her mother's treatment to the independent Aged Care Complaints Commissioner, part of the government's regulatory armoury. Its investigation expressed serious concerns about the treatment of her pressure sores and found the home had taken "minimal actions" to address Dawn's weight loss.
But nobody was sacked, fined or charged. Weston wanted an apology. A Christadelphians executive wrote back offering his "sincere regrets concerning the issues you have raised".
"It's only an 'apology' about the 'issues' I raised. Not for what happened to my mother," Weston says bluntly.
A few months after her mother died, in October last year, Chamberlain Gardens was reaccredited by the government's Aged Care Quality Agency, meeting "44 of the 44 expected outcomes".
Nursing homes have been encouraged to make profits, largely from government funding, since John Howard passed the Aged Care Act in 1997. The act also introduced regulations intended to scrutinise and hold providers to account.
The top-tier private aged-care companies and some of the big not-for-profits make up to $25,000 per bed per year in profits – a figure that grows every year.
Between them, the nine biggest private nursing home companies cleared more than $240 million after tax, and the big not-for-profits made comparable (tax-free) surpluses. Christadelphian Homes, which housed Dawn Weston, reported a $14.5 million surplus. The sector as a whole cleared $1.1 billion in 2016.
Talk to enough people involved in the system and you repeatedly hear this comment: "It's all about the money."
Operators have "become a powerful lobby that fiercely resists any reduction in government subsidies or any increase in oversight. Two of these companies are owned by private equity firms and three, Regis, Estia and Japara – are listed on the Australian Stock Exchange. Another, Bupa, is listed in London.
‘You can earn more at Aldi’
"At their best, aged care homes offer a communal style of living – happy, sociable and relaxing, with the right amount of support," says a recent advertising feature for Allity's for-profit homes.
"There is always something happening – a resident playing a tune on the grand piano, friends meeting for morning tea in the cafe ... There's something for everyone."
Glossy advertising material depicts smiling older Australians socialising and enjoying life. Some homes have giant chandeliers and marble foyers and charge more than $2 million up front just to secure a place.
But the vast majority of people coming into homes require high levels of care. Beyond the facade, what matters is the staff. At the heart of virtually every complaint about nursing homes is insufficient carers, lack of training, lack of expertise, poor English skills.
"Two people in my nursing home were using their buzzers for three hours before someone came and took them to the toilet," says one resident of a for-profit home in an upmarket suburb in Melbourne, speaking anonymously. "I went to the manager and and said, 'There's a chronic lack of staff.' They say, 'No, no, there's enough'."
Australian nursing homes have no minimum legal ratio of staff to residents, no minimum training requirement and no statutory requirement to have a nurse on duty at all times. The only legal requirement is the unenforceable rule that staff numbers are "adequate".
The vast majority of care staff in nursing homes are "personal care attendants", also known as "personal care workers" or "assistants in nursing". Most have a Certificate III qualification, though Health Department figures show about 6 per cent have not even finished school.
The average level of qualifications in nursing homes has crashed in the past 15 years in what the Queensland Health Department describes as a "de-professionalisation" of the industry.
Virtually all the students for the Certificate III qualification in aged care are doing courses that are shorter than the minimum 33 weeks full time recommended by the vocational education regulator, the Australian Skills Quality Authority.
Aged-care trainer and former nurse Bev Myers sees some new recruits who have done a three-week online course before being made to organise their own placement in a home.
"I constantly have students from other Registered Training Organisations whose trainers don't come to do their supervision, and they want to tag along with me," says trainer Bev Myers. "I have to put the blinkers on when I'm in some of these facilities."
Over the past decade, care attendants have grown from half the workforce in homes to almost three-quarters, with the number of qualified nurses falling sharply.
The key to the growth in the number of personal care workers is that they are cheap.
"I say to my students that you can earn more at Aldi. It's $18 to $19 per hour when they first start," Myers says.
"Centrelink and job networks are saying to the long-term unemployed, plus new students: 'It's easy' … [and] Centrelink has told them, 'We'll cut you off [from your payments] if you don't do a course'," Myers says.
Nurses in aged care are cheaper than those in hospitals too. They are held in lower esteem within the industry and earn about 10 per cent less than nurses in acute care.
A former aged-care nurse, Lynette Dickens, is scathing.
"I call it the elephants' graveyard because so many are older nurses who wouldn't cut it in a hospital situation any more," she says.
"They are not up with the changes and developments. They go there to hide."
The most reliable source of carers is new migrants - about 40 per cent of recent recruits are from overseas, people looking for either permanent residency or a first step on the job ladder.
Brenda Kemboi is young and recently arrived from Kenya. She has impeccable English, a Certificate III and "a passion to do the job".
"There are so many foreigners, especially from India, Kenya, Nigeria," says Kemboi.
"You can earn a living through aged care ... and you can have time to go to school ... the times are very suitable because it's 24-hour care."
But this can lead to cultural misunderstandings between carers and residents, many with dementia and born in the 1930s, whose most intimate needs – washing and toileting – are being catered for by people from other cultures, races and religions.
The problems cut both ways.
"Some residents are so racist, they don't like dealing with either Africans or, mostly, Indians," says Kemboi.
One man particularly "didn't like me at first sight … black c---, yeah, that's what he says".
Language can also be a problem. A recent Department of Health study found that 29 per cent of facilities felt their staff had problems communicating with residents and other staff.
Care notes are crucial to passing on information about residents, but aged care nurse and former home manager Mark Aitken said of carers with poor English skills: "I'd read some of residents' notes for the day and I'd say, 'I don't know what you're talking about'."
"I can remember going with some students and I asked a young male student to go and get me a face washer. And when he hadn't come back after 10 minutes, I went and found him," says Myers of one of her trainees.
"Well, he didn't know what a face washer was. And he felt embarrassed to ask. So we're in the shower with somebody waiting for this face washer to come back."
Recruitment is the number one concern of the industry itself. Caring is a tough job and the need for new staff is growing fast. Unlike nurses, there's no way to remove the professional accreditation of a personal care worker - because no accreditation program exists.
The Aged Care Guild, a lobby group representing Australia's nine largest for-profit nursing home companies, wants a registration system so that it can "regulate people out of the sector" and "improve accountability of staff and professionalisation".
However, the guild says it's "important" that any such system would "have no wage or cost implications".
Bourbon and bingo
"Lifestyle" activities in many homes are advertised as fulfilling quality-of-life needs but most residents "very rarely get out of the home", according to one former manager.
"Inside the home, activities are usually very simple – things like card games, memory games, bingo. So there's not a lot of mental stimulus … It's very bottom of the range and, from my point of view, it's just done to get ongoing accreditation from the government," the former manager says.
"People don't really go into aged care to drink bourbon and have conversations," says Professor Rhonda Nay, who has spent her career in the sector and is now an emeritus professor with a specialty in interdisciplinary aged care.
In reality, homes are increasingly required to deal with the multiple ailments of ageing then, ultimately, palliative care and death. More than 80 per cent of residents require high care; one-third of them will die each year.
"These people need clinical care but funding hasn't kept up," says Nay. "It is still possible to work with extremely vulnerable older people while having no relevant qualification. This should be an outrage."
While for-profit, not-for-profit and government providers are all part of the system, the proportion of beds run for profit is growing.
"Generally speaking, the for-profits do have a lower staff ratio and often it's challenging to ever find out what the ratio is," says one industry player.
Prospective residents or their families very rarely get an answer when they ask a commercial aged-care facility what their staff-to-patient ratio is.
How low can you go?
In the United States, the Centre for Medicare and Medicaid Services recommends a minimum total of 4.1 hours of care per resident per day, provided by a combination of both personal carers and trained nurses.
Industry reports in Australia show that residents here receive just 2.8 hours, according to analysis by Aged Care Crisis' Dr Michael Wynne, a retired surgeon - a figure that, according to American research, means they may "needlessly suffer harm".
"Homes use the lowest number of staff they can without using restraints, or family complaining," says Myers. "The personal care attendant is looking after 10 to 15 residents with someone [a floater] to help with two-person assists [moving people]. That seems to be everywhere."
"The majority of people are fed and cared for, and don't have bad things happen to them," says a former nursing home manager, speaking anonymously. "But is that enough for a human being? Most people ... would expect more."
One consequence of low staff numbers and few nurses, particularly at night, is that care staff who cannot diagnose illnesses tend to call an ambulance and have a resident sent to hospital for relatively minor health reasons. For dementia patients in particular, hospitals are upsetting and disorienting environments.
Ken Wyatt told Fairfax Media families bear some responsibility for finding out the ratio of staff to patients.
"It's a question you should ask … you should ask a series of questions about the facility in which you're putting a family member."
But the facility is not compelled to tell you. And if a nursing home, whether for-profit or not-for-profit, is seeking to increase its margins, cutting staff – who make up about 80 per cent of all costs – is the first place it looks.
Pat Sparrow, the chief executive of the not-for-profit homes lobby group ACSA, says the "current regulatory regime, especially on staffing, is right, because ... they have the right number of staff and mix of staff to meet the residents' needs".
Cameron O'Reilly, the chief executive of the Aged Care Guild, represents the nine biggest for-profit providers and says that with "a few hundred thousand people being cared for ... sometimes there will be incidents of quality failures that are regrettable".
"I don't believe that, relative to the past, there's been any deterioration in quality, but there is more opportunity now with residents and consumers to expose where there have been failings."
He says the level of government funding "determines the capacity of the provider to pay for care", and homes "operate within that care funding envelope and do their best in that envelope".
One nursing home manager has a different take: "The level of staff is dictated by what you can get away with."
A tragic mistake
Warren Maris' father, Ted, survived Changi and the Burma Railway and had what Maris describes as "a near-front-row seat" for the Hiroshima bomb. But one day in 2012 in his private, for-profit nursing home in Brisbane, a personal care attendant gave Ted Maris medication for high blood pressure instead of his actual condition: low blood pressure.
"As a result, we watched Dad die slowly over a couple of weeks, predominantly, we were informed, of a series of strokes caused by the wrong drugs," Maris said.
"Before that, my dad was still in a pretty good place health wise: he was quite active, not strong but far from frail. He had early stage Alzheimer's but could still crack a joke, be in the moment, hold a conversation."
In the old days, medication in nursing homes was packaged by a pharmacist and administered by a nurse. Now, technicians in factories pack the tablets and personal carers are responsible for making sure the resident takes them.
"The PCA only has to count the number of pills, to see if it matches the number of orders on the chart, and then look at the picture of the patient on the pack," says aged-care pharmacist Kay Dunkley. "That is quite a high risk, in my opinion."
"In practice, medication counts are rarely done and tablets from the Webster-paks are administered without check," says an industry whistleblower.
Before her current job, at a small and well-run home on Melbourne's fringes, Brenda Kemboi worked as an agency nurse, filling gaps in the roster, and also in a place where she helped look after 60 residents.
"You can't know a care plan for 60 people," she says.
As for agency work: "You come there and you don't know the people you're dealing with. I have to take their medication chart, go and look for this resident or go and look for staff and ask, 'Who is this? Who is this?' and those staff are busy, so they don't really have the time ... So I've done mistakes in giving medication. I would give the wrong tablet to the wrong resident ... just because I'm in so much hurry."
For dementia patients - a growing proportion of residents of nursing homes - good treatment is complex and time consuming, and involves distraction and intensive attention. But homes, strapped for staff, often try a simpler approach – powerful anti-psychotic medication.
It's also known as "chemical restraint".
Graeme Samuel, the chairman of Alzheimer's Australia, told Fairfax Media it was a "terrible indictment" that 70,000 people are subjected to chemical restraint while only 10,000 to 15,000 get medical benefit from it.
Warren Maris says he was "bloody shattered" by his father's death, "somewhere between numb and furious".
"There is no recourse or comeback on the home in this situation. The feeling of the system is that at his age, 91, he'd had a good innings."
When Ken Wyatt, who has Aboriginal heritage, took the aged-care portfolio, he saw it as an opportunity to view "ageing Australians as being no different to indigenous elders, who are held in high regard because of their knowledge and wisdom".
Australia, he believes, is a "world leader in aged-care provision" - a sentiment echoed by providers.
But he is worried about aspects of it. Earlier this year he announced a wide-ranging inquiry - due to report soon - after a series of scandals at Oakden, a government-run psychiatric nursing home in South Australia.
Oakden had been the subject of a decade of complaints, the scene of mistreatment and mis-medication as well as a sexual assault by a carer, and a murder by a resident. All went under the radar until a family member of a resident blew the whistle to media in January.
For most of that period, Oakden, a state government-owned facility, passed its federal accreditation audits.
According to Wyatt, "families ... need to be vigilant", though he also acknowledged that policy in the sector was often "driven by the industry".
"What I wanted [nursing homes] to do was think about the person in the bed when they made the decisions. And until we do that ... then we're not going to change."
According to Joe Ibrahim, the system is not set up to invite us to pay attention.
"Nursing homes are hidden away, they're not part of our lives. And none of these lives would count in terms of economic years of life lost."
Viewed like that, "death seems nice, neat and tidy and everyone's free to move on".
But that ignores the profound feelings that families have for the untimely deaths of their mothers, fathers or grandparents.
"We expect old people to die, but this is my mother. I can't let this go," says Kaye Weston, more than a year after Dawn died.
"They don't realise how this destroys families and individuals. I'm in a state of stress now. It's inescapable. I'm so angry.
"I'd rather euthanase myself than enter aged care."