by Lucy Dean
with individual contributions from
Emily Bradwell, Josh Flint, Sydney Pead
and Kirstie Wellauer
To stay healthy, Dot takes 12 tablets daily. They dry her mouth out so she uses pawpaw ointment. She had a blister from a removed skin cancer on her forehead drained this morning so she could comb her hair comfortably. Care staff visit a few times a day to change the heat pack for her bad back.
And Harry died ten years ago.
She misses him every day.
However, she counts herself as one of the lucky ones; she doesn’t have dementia, like Harry did.
“That’s worse than all these aches and pains,” she says.
“There’re a lot of people here who don’t even know where their room is.”
“It’s a question of reining in outrageous expectations and that’s the greatest political challenge in Australia today. Telling people they can’t have what they thought they were entitled to – good luck with that.”
The entire industry will struggle. However, it will be forced to improve.
For many, this improvement can’t come soon enough. Last year, Australia’s 2.8 million unpaid carers worked 1.9 billion hours. These people tend to be the parents, spouses, siblings or children of the person they’re caring for. If they all stopped working, it would cost $60.3 billion to replace them with paid staff. The Australian Unity Wellbeing Index reports carers have the lowest level of wellbeing in the country.
Yet many wouldn’t give up the role. Tracy Sami, manager of Sutherland Shire Carer Support Service says carers often continue to care for their loved ones after they move into a nursing home. “Often our carers will say it’s as intense a caring role now as it was when they were at home because they’re going in every morning still, still feeding them, still helping shower.”
“Carers have a huge amount of guilt when they put someone they love in residential care, so the caring role certainly doesn’t stop.”
It’s not just guilt that can keep a family member in a caring position. There’s love, too. In Tracy’s role, she encourages carers to build friendships and contacts with other carers while teaching skills and offering therapy. She has seen some remarkable things done in the name of love.
She remembers an 80-year-old carer who had to wake up every two hours in the night to turn her 100-year-old mother. The only full nights she slept a year were at the two-night carers retreats organised by Tracy. She did this for seven years.
But Sutherland Shire Carer Support Service has to deliver their programs on shaky government funding. They’re funded until June 2017. Beyond that, who knows?
She says all support services like hers face the same issue. Just months before their funding is due to end, they find out they’ve been funded for another year.
This ticking-clock problem extends to national politics, Bernard Salt says. “Politicians are not necessarily rewarded electorally for doing something that will make the country stronger in 2030 and that’s the problem.”
It’s hard to build sustainable policy when you’re trying to get re-elected. So the problem is shifted along.
By the time Baby Boomers are using aged care services, they’ll be voting with their feet, Salt warns. “They’re going to vote for the politicians that give them the most money and that money’s going to come from young people.”
“We’re actually diminishing the long term sustainability of the economy.”
And without sustainability, Australia will cannibalise itself.
Professor Richard Fleming talks reminiscent therapy;
Professor Fleming has worked with the elderly for 30 years as a psychologist. He's currently director of NSW/ACT Dementia Training Study Centre.
“Reminiscent therapy is a very natural process. We do it by helping them to look back over their lives, to identify the high points, the low points to discuss them and to come to terms with them and to put them away. “
Over time, Nicholas came to be one of the more experienced patients in the hospital. It was a bittersweet mantle; now he was the one answering the questions. But he loved answering them. Years later, as residential care manager at Thomas Holt, he still does.
“It is so satisfying bringing a heightened quality of life to people who are so dependent,” he says. “For these residents you’re really affecting their day-to-day life. You can’t put a bandaid on them and go, off you go. They need you every single day.”
In aged care, he says, there is a requirement to address the patient beyond their physical demands. Care has to include their emotional and spiritual needs. Just talking to patients with dementia about their past is a therapy. Physiotherapists are often employed by nursing homes because they address physical and social needs, giving massages and exercises but also human interaction and personal attention.
Cox says the capacity for aged care associations to include physiotherapy will decrease under proposed changes to the Aged Care Funding Instrument (ACFI). The cut of $1.2 billion over four years will see smaller aged care service providers consolidating, or selling to bigger service providers like Bupa. Services seen as non-essential will risk being cut.
“What’s going to happen is there’s going to be a lot of physiotherapists out there who are going to be working at Macca's and KFC,” Cox says.
The changes to the ACFI will make the instrument less complex and will crack down on industry rorting, Federal Health and Aged Care Minister Sussan Ley said last December. As the current model stands, providers are paid for the patient’s care needs, not the care delivered. For unscrupulous providers, that means there’s not much of an incentive to improve the health of their patients. But there is an incentive to exaggerate the needs of the patient. There’s no mandated staff to patient ratio, so facilities can staff their homes as they see fit.
The aged care industry argues that the cuts will only shift the financial burden onto patients and their families.
When Kate Swaffer was 49 she was diagnosed with dementia. She defies the stereotype of dementia while wrestling with its implications as so many Australians do. She shares her story with Emily Bradwell.
As an aged care educator and nurse for 30 years, Tracey Newcombe has seen some things. She’s wiped countless bums and enjoyed innumerable conversations with patients. She knows it isn't uncommon for someone with dementia to go missing. But she hasn't known anyone who has.
She knows that growing old can be so lonely. The longer you live, the greater the chance of outliving your friends, your partner or your family, she says. And no one wants to bury someone they love.
Tracey remembers elderly couples that committed murder-suicides in suicide pacts after being diagnosed with dementia.
The prevalence of depression increases with age. In Australia, men over 85 have the highest suicide rate out of any group.
Just a few weeks ago, a 95-year-old patient of Tracey’s returned home after a bowel surgery. He’d been a widower for a long time.
“He’d been living with chronic illness. He wasn’t going to get better because he was 95. So he was looking at the rest of his days.”
There were services in place to help him but he turned them away. Shortly after, he shot himself.
“He gave no indication he was depressed,” Tracey says. “I guess he got home and thought, ‘Nope.’”
“Not doing it.”
Professor Richard Fleming talks depression;
“Depression is very prevalent in nursing homes today. [It can] be associated with the stigma and can also be due to the level of dementia that we have in nursing homes."
"It is also due to the nature of many of the nursing homes we have in Australia; they aren’t particularly well designed or well staffed. Contact with staff is measured in minutes per day.”
Professor Richard Fleming talks nursing home stigma:
“People go into aged care at a much later stage in their ageing process; the average stay is measured in months and not years, because it is not a first choice."
"There is a natural desire to stay at home as long as possible and that is from the stigma that surrounds being paced in an aged care facility."
"The sense of abandonment because they have no option or that their families can’t or won’t look after them and guilt on the part of the families having to put their loved one in aged care. ”
There is a stigma around aged care work. It’s physically and emotionally demanding, as any nursing role can be. But Tracey says nurses in aged care are looked down upon.
“There’s a long standing prejudice that ‘real’ nurses work in acute care in a hospital, and the folks that wind up in aged care are those that really couldn’t cut the mustard.”
“It’s an ancient prejudice and it’s stupid, but it’s still there.”
Nurses who work in aged care are inclined to say, “I just work in aged care,” Tracey says.
Aged care nurses don’t get a great rap in the media either.
If you search, 'aged care nurse,' in Google news, the top entries are stories about nurses who murder or harm, like Megan Haines who stands accused of murdering two residents with lethal doses of insulin. Another nurse in Newcastle is accused of doing the same thing and a nurse in Kensington has been formally reprimanded for bathing a resident in bleach. These stories are from just the last three months.
This could be why it was so difficult to gain access to a home for this story. Originally, the aim was to spend a day in the common area of a nursing home, chatting to the residents, carers and visitors. Soaking it in. This didn’t happen.
Most of the time no reason was given; calls and emails just weren’t returned. If a reason was given, it was privacy. Of course, this is fair enough. It would be inappropriate and unethical to hang around someone’s home without their consent, and that is what nursing homes are.
When Tracey was told about this, she laughed.
"Good luck getting in there."
For a journalist to report on a nursing home they’d need to have a staff member keeping an eye on them full time, she said. For the wellbeing of the residents, of course. But even the most scrupulous home would be nervous about a reporter sniffing around.
In the years following WWII, Dot and Harry married. Margaret Pepper moved to Australia with her family, leaving England and the whistling bombs of The Blitz behind. Margaret was one of many immigrants Australia welcomed. A haven of relative peace and warmer weather, Australia beckoned to European refugees and also to those simply seeking a better life.
For Australians, the choice to welcome immigrants wasn't just charity. The political anthem of the day was “Populate or Perish!”
In more recent years we've welcomed Vietnamese and Cambodian refugees and most recently, people from Sri Lanka, Iraq and Afghanistan. This is in addition to our regular immigration scheme.