Older Australians are desperate to live out their lives at home – is it ageism that stops us helping them?

Four families with four heartbreaking stories throw a spotlight on a broken aged care system which leaves sick, elderly Australians waiting years for help. Some die before it comes.

David and Gillian Atkinson with their dog Spot in their Morphett Vale. Picture: Matt Turner

‘You can see why I don’t want to leave this place,” says Brian Packer as he slips his hand inside the metal letter box he made himself, hoping for good news. Behind him is his home, just a few minutes’ walk to the beach at Chiton, while in front the land dips into a valley of farms and bush with hills behind.

“Paradise,” he says of this stretch between Victor Harbor and Port Elliott, where he and his late wife Millicent came and built their carpet cleaning business back in the early 1980s.

Admittedly, Brian would take a lot longer than a few minutes to reach the beach these days. The 85-year-old’s right hip joint has crumbled away, his thighbone moving independently, click-clicking in a way he finds terrifying. So he shuffles slowly along, weight on the other leg, leaning on a wheeled walker for support. It’s tedious and frustrating, and while the trip to check the mail is good exercise, it’s tricky over the sloping block.

What Brian is waiting for is a letter from Canberra announcing a date he’ll start receiving the funding for a Home Care package that will provide the help he hopes will enable him to live – and perhaps die one day – in his own home.

Brian Packer, able to move only with his walker, at his Chiton home. Picture by Matt Turner.

That, overwhelmingly, is where Australians want to stay as the days of their lives grow shorter. But many cannot afford to do so alone, and so the government provides annual packages of money, on four different levels, for those assessed as needing help.

For Canberra, it’s cheaper to help people stay at home than it is to subsidise their care in an aged care home. But there are big problems with the home care packages.

Firstly, there are 100,000 people on the waiting list, which is less than there was a year ago, but still an enormous number. That means delays of anywhere from six months for the lowest Level One package, worth around $9000 a year, to 31 months for Level Four, worth about $52,000 to pay for care, help, and some home improvements to make life easier.

Of course, given the delays, by the time a person receives the package they’ve been promised, they may well have deteriorated to the point they really need a higher level.

And given that most people only really need intense care in the final years of their lives – on average, the mid-80s – many die waiting, or become so frail or demented they are forced to move into aged care. About 28,000 are reported to have died on those waiting lists in the two years to 2020.

As well, even the highest Level Four package cannot give assistance that comes anywhere near to what would be available in an aged care facility. It can provide anywhere from 10 to 15 hours a week of care or help for a person, depending on the provider. On Level One you might get two or three hours.

All of this, says the Royal Commission into Aged Care Safety and Quality, is cruel and discriminatory. Its lawyers are arguing for a brand new and independent system that gives older Australians rights to top quality and timely care, at home where possible, without waiting lists. What the commissioners think will be revealed in their report due on February 26.

Brian Packer waited more than 18 months for his Level Two home care package. Picture by Matt Turner.

Brian’s wife died in 2019 after a long deterioration. He was her carer and he’s feeling worn out. When we first speak, before Christmas, his Level One package has expired. “They said it was short-term,” he says. “Virtually they were doing me a favour.” A favour? The man cannot walk, and if he fell he’d never get up without help from those he’d summon with the emergency pendant around his neck.

Sixteen months before, he’d been assessed and promised Level Two, worth about $15,000. “They told me it would take 12 to 15 months,” he says hopefully. “So it should be soon.”

Without that letter, he’ll struggle to stay here. He can cook, drive, and is just mobile enough to go to the shops for groceries. But he cannot clean or tend the garden, and his memory is struggling.

The SA aged care provider that has helped him at home, My Care Solution (which has been cleaning once every three weeks for no charge) say he needs at least a Level Three package.

Given that he owns his home, why not dip into the equity to provide himself some care while he waits? Very few older Australians do – most seem to want to keep their nest eggs intact for the next generation. Brian says he didn’t consider that.

Well, what about an aged care home, where there’s no housework or upkeep?

“It would drive me bats,” he says. But for an outgoing bloke who says he’d be lucky to see a couple of people every fortnight, there’d be company in an aged care home?

“I realise that,” he says. “But they’d be the same people every day. And they’ve all got their problems. That’s what the place is there for, to look after them. But if I can carry on and meet someone different every day, that’s how I’d like it.”

Brian Packer at the letterbox at Chiton, waiting for a letter that could help him stay at home and pay for carers to help him. Picture: Roy Eccleston

Before his mobility issues, Brian led a life of activity, building his own sailing boat, learning to fly, travelling the world, driving his caravan (now stuck up the back of the yard) around Australia, making toys for kids with those still-deft hands. “My mind is very active. I love reading, model-making and wood carving,” he says.

He’s had to stop going to the volunteer workshop to make those toys because it’s been judged as too dangerous. For the same reason he can’t get up to his shed where he’s got marvellous tools – although if he got the package a carer might be able to take him up there.

Another option to improve his mobility is an operation to fix his hip. But would his heart stand it? That’s what the doctors are worried about. He might not wake up.

So he wants to stay in his home with the view, the one he built in the early 1980s when there was just three in the street and nobody could understand why he moved here. “As long as I can,” he confirms. “I love cooking. I can relax here. I don’t have anyone to tell me what to do.”

His determination to stay at home has likely been spurred by news reports on evidence gathered by the Royal Commission. An interim report in 2019 was scathing about the overall quality of care for older people, calling it uneven, unkind, uncaring and “a shocking tale of neglect”.

The problems identified have been many: food can be poor; staff are too few, overworked, underpaid and sometimes underqualified; management doesn’t listen to complaints; and there’s no way to compare the quality of the different types of services, whether residential care or care at home.

A key issue is money. Canberra spends about $21 billion on aged care programs, most of that – around $14bn – on aged care homes with about 238,000 residents. Just under $7bn goes to assistance to keep people at home, with around 170,000 on packages. Yet it’s not enough.

Rather than provide each older person with enough to meet their assessed needs, Canberra sets a budget at what it thinks it can afford, and that is rationed. There’s not enough to go round.

And whose fault is that? While the federal government is chief funder, it is elected by the nation’s voters. And that, according to the commissioners, makes all of us part of the problem, whether because we are just ignorant, unwilling to consider the future that awaits all of us, or part of an ageist mindset that thinks older people have less value.

The most high-profile problems are in the aged care homes, which have evolved into places mostly occupied by the very frail, the chronically ill, and those with dementia (now about 50 per cent, on some estimates). High levels of abuse and neglect, overuse of drugs as “chemical restraints”, and an estimated 50 sexual assaults nationally a week have been highlighted.

The average age when people go into this care is around 86. Because they are older and sicker – as more people who can, stay at home – the average time before death is becoming shorter: approaching a year, or two years for those with dementia, according to the industry.

Catherine Bauer is still shocked by what she saw the day she toured an eastern suburbs aged care home thinking it might be ideal for her mother, Mary, who was recovering from a minor stroke.

Catherine had arrived at her parents’ home one day to take her mum for a haircut when she found her lying on the floor. “I said, ‘what are you doing down there’ … and I could tell she’d temporarily lost her vision and I knew immediately something had happened.”

Bauer and her siblings had worried that a disaster of some kind might strike. Their mother was suffering mild dementia and her mobility around the house, with stairs, wasn’t great. The kids tried to convince their parents that a single storey home would be better but their father didn’t like the idea.

“Among ourselves we said, we have to prepare that there will be a phone call and some awful disaster, and we’ll have to make a whole lot of decisions in crisis mode,” Catherine says.

About two years ago, they were proved correct. And when Mary, then 87, went to hospital for treatment and then rehabilitation, it was decided that she really should not return home.

So the question became: where would Mary live?

Catherine Bauer's mother Mary Bauer as a TAA airline hostess. Picture: Supplied by family.

Catherine Bauer with her mother Mary Bauer. Picture: Supplied by family.

Answering that question took 55-year-old Catherine and her siblings into a world of stress and confusion as they simultaneously scrambled to negotiate bureaucracy, paperwork and finance issues as they searched for a place that was not just suitable but welcoming and good.

The family home was in Wattle Park so Catherine looked for something near there, so her dad could visit easily. “There was one spot in the eastern suburbs … I was probably being a suburb snob and thought it would be really top notch,” she recalls.

She was wrong. “It was a very cold and sterile environment.” Everything was plastic and vinyl, furnishings were basic and outdated, and there were chenille bedspreads like something from the 1970s.

“And we were walking down a corridor, looking into rooms as you go, glancing in,” Catherine says. “And I said to my brother, ‘there’s an old man on the floor’.

“He was on the other side of the bed. We could see his legs and we knew it was a man because he was calling, saying ‘help me, help me’.

“And the lady who was taking us on the tour seemed oblivious to the fact. And so … I said, ‘excuse me, someone’s on the floor of the room we just walked past’. And then she stopped and attended to it. And I thought, ‘that’s not a good sign’.

By the time the tour was over she was feeling depressed. Outside, she turned to her brother and said: “I wouldn’t board my cat in there”. Catherine remembers his reply: “I wouldn’t put my dog in there either.”

With other homes showing long waiting lists, she began to fear that the family would need to keep Mary at home and pay for a nurse, because her father would not be able to manage.

The family found themselves running around in circles, she says. Her sister managed the paperwork side, and it was enormously stressful. What was needed, they realised, was the equivalent of a mortgage broker who could look at your circumstances and make recommendations.

“Unless you’re an expert in the field, it really is very difficult and you are already stressed and worried about your elderly relative and trying to find your way through on your own is an added stress at a time when you’re already struggling.”

Fortunately, Catherine says they located a room and welcoming environment at Estia Health in Kensington Gardens.

Mary Bauer, now in an aged care home, after a stroke at home. Picture: Supplied by family.

It was not the end of their ordeal. There was still much paperwork to organise, a refundable bond of around $500,000 to be found, and ongoing payments for extras for Mary such as hair dressing and the like. But, two years on, while her dementia has worsened, Mary still knows who her children are, and seems happy.

What would have been much better is if there had been an easier system to guide the family through the process, and a way of comparing the different facilities, Catherine says. In the end, she relied on word of mouth. “I have a friend who is an aged care nurse and she gave me a bit of off-the-record advice – stay away from this, this place is good. I did think afterwards if there’s something like the old Canstar reviews, or Choice.”

As it happens, both a personal care guide to help people navigate the system and advise them, for free, is being recommended by the Royal Commission’s counsel, as is a star rating system – a league table for aged care – that would allow people to compare the performance of the different providers in both home care and residential care.

Like Brian Packer at Chiton, Graeme and Joan Strudwick anxiously waited for the care packages that they needed to stay at home, and for which they had been approved. But they never arrived.

The 85 year olds first dated at 16 and, almost 70 years later, still can’t bear a day apart. In their teens of course they could not know what the future held: the children they’d have, the earthmoving business they would start, their decision to move to Victor Harbor – nor the sapping emphysema Graeme would develop, or the dementia that would creep up on Joan.

When I met their daughter Kay Fladrich, 63, before Christmas at her home in Encounter Bay, she was resolute in her determination to help her parents, then at home, but exhausted by the care and the process.

In January last year the Strudwicks had been visited by an aged care assessment team and a month later approved for Level Two packages – an annual payment of $32,000 for help, care and home improvements between them. Nothing then happened until September, when they were paid Level One, about $18,000 between them.

Kay says that got them about five hours of help a week at home with My Care Solution – enough to help shower Graeme, who was prone to falls, and assist Joan with tasks such as changing the bed sheets. Kay paid extra to make sure the showering could be done every day.

It was clear that it was not enough, and in November the couple were both approved for the top level of care to help them stay at home, a Level Four package worth about $52,000 each. That could provide between 20 and 30 hours a week depending on who delivered it and what sort of care it was. But it never arrived. Even the Level Two never turned up.

Until five or six years ago, the couple were doing well. They were social, able to get about. But then they got the flu, didn’t really tell anyone, and never properly recovered. Kay says they wouldn’t eat very much, so they became even more frail. And with Joan’s advancing dementia, she lost the ability to cook. Kay made extra meals for them to put in the freezer, but even all of those weren’t eaten.

Kay Fladrich of Encounter Bay, whose parents Joan and Graeme Strudwick were approved for high care packages they never received. Picture: Roy Eccleston

Meanwhile, Graeme’s emphysema was worse. A walk to the car would tire him out, and he’d lean on Joan for physical support – which horrified their family since she was not strong herself. At that point, before Christmas, Graeme was not keen to move from home into aged care. “Dad just doesn’t want anything to change,” Kay told me. “Mum very much wants them to choose where they’re going, so that if they need to go into care they are able to make a choice of where they go.”

And then, just before I was to meet the couple, Graeme had a fall, broke three ribs and was taken to hospital. A couple more like this and he wouldn’t be going home, the doctors warned. After that, everything happened quickly: when a room came up at a Southern Cross Care home at McCracken that the couple liked, Graeme took it. Soon after, another room became available down the corridor, so Joan took that, keen to be with her husband.

“It was really what they needed,” Kay says. One room will be their bedroom and the other a living area. They’re quite happy now they’ve got over the shock of it, because Dad had never really thought about it, whereas Mum has been talking about it for a few years.”

The idea of staying in their own home had become impractical, even with the promised higher package. “We realised that things were always going to happen when no one was there,” Kay says.

The lesson she takes is that the government, and society generally, needs to recognise the aged deserve better. “I think we forget that one day we will all be old,” she says. “We’ve become a society only looking at the now and totally concerned with our own survival. The frail old are seen as an inconvenience. At the supermarket checkout everyone wants to rush past and it’s the frail person who ends up apologising. I find that really sad.”

It will catch up with us all one day, she says. “We’re going to have to deal with what are we going to do with all these people at the other end. They need quality of life. It’s no good keeping them alive and stopping them having strokes and heart attacks … if there’s no point being alive.”

David and Gillian Atkinson. Picture: Matt Turner.

There are a few things that keep David Atkinson awake at night, but mainly it’s the juggling to keep his wife Gillian as well as can be, and both of them in their own home. They definitely do not want to be in residential care.

David turns 90 this year, while Gillian will be 80. His world revolves around his wife, her welfare never far from mind.

The biggest worry is his driving licence. How will he drive if the doctor is right that the tremors he apparently has are early signs of Parkinson’s disease? “I lay awake at night worrying about (what happens) if they take the licence away, which they’re quite entitled to do. The problem is, what does my wife do?”

He’s been feeling despondent about that. He thinks younger people don’t appreciate the difficulties of older age. He’s been yelled at on the road for doing the speed limit, shouted at for a minor parking bingle at the supermarket.

But the licence worries him most. Without it, the former London bus driver would be unable to drive Gillian to her appointments for the dementia that she was diagnosed with about 18 months ago, never mind for regular outings to let her out of the house. Public transport is no help for them because they’re slow walkers and they can only last two hours before needing a loo. It would need to be taxis to the doctor. And more taxis to do the shopping. All that adds up. Which raises the other worry: money.

He and Gillian had both been approved for Level Two packages but only she received one. That paid for help from care provider ACH whose staff help the couple, doing gardening, cleaning and taking Gillian out for two hours a week, perhaps for lunch, which gives David respite time.

Just before publication, after a 14 month wait, he also received his package. But they have struggled financially, and now Gillian needs a Level Three, he feels. Still the extra money will help him do what is needed for his wife’s wellbeing.

The couple has already stepped up to help themselves, borrowing $10,000 against their house to make safety improvements, especially in the bathroom, to avoid trips. That sounds like a sensible move, unlocking funds from their main asset to keep things as safe as possible, but relatively few elderly people do it.

David’s worried for Gillian’s future. “She’s deteriorated,” he says of the dementia. Cooking, housework, playing the saxophone, have all gone. And her memory is worse, so she can’t go out alone. “I got lost, didn’t I?” Gillian says, as he’s explaining.

Her disease isn’t obvious. She can recall in detail the work she used to do at the Waite Institute as a secretary for one senior scientist at a time when electron microscopes were the latest technology. But later, she tells that same story again.

The doctor has recommended a drink that could help with early dementia, so David makes sure she has that every day. It costs more than $6 for each bottle, so it adds up.

The other thing the doctor wants is exercise to help Gillian’s balance and brain. “The doctor keeps on about it, she’s got to exercise,” David says. “But there’s a limit to what we can afford.” Now with his Level Two coming through he hopes to take over things such as cleaning and gardening, freeing up Gillian’s budget for the exercise.

There would be other uses for the money, but they are not his priorities. He struggles to get out of his chair, so maybe a frame around that would be handy, like he already has in the loo. Or what about those big armchairs that lift you up so you can step out of them? A couple of those would be handy, he allows.

David and Gillian Atkinson. Picture: Matt Turner

But dominating all his thinking is the need to stay at home in this little Morphett Vale townhouse they fell in love with.

The Royal Commission has highlighted many problems with residential care and he doesn’t want Gillian to experience any of them. He’d probably manage but his wife would not cope well, he says.

“Gillian’s mother was in a nursing home, a very good one. But I couldn’t see her living like that. Honestly, things happen. There’s dirty linen gets put back into the wardrobe, and it’s not anybody’s fault, it just happens.

“And I’d worry about her menu because she got to be gluten-free everything, and it might not happen. I just worry. I wouldn’t want her to stay there. I’ll manage but I wouldn’t mind some more help.”

Fair enough too. At nearly 90, his knees creak. “But it’s a minor detail. My main concern is Gillian. When I go, that’s the biggest worry. I can’t see her going into a nursing home.”

“Step by step,” Gillian intervenes gently to calm her husband. “Or it’s too overwhelming.”

Back at Chiton, Brian Packer finally has the letter he’s been waiting for. It came in January, announcing his Level Two payments.

“It’s $15,000 a year,” he says, listing all the extra things he can now afford to have done such as lawn mowing and gardening, cleaning and help with shopping.

“It runs out pretty quick if you use it too much, though,” he cautions.

His carers think he already needs the next level to keep him at home. And Brian hasn’t given up on the idea he can become more mobile in the future, booking in for a hip operation in March – if his anaesthetist thinks his heart can take it.

There’s no way he is ready to leave his house with the view just yet.