A year ago, Graham Paxton got government approval to receive aged care support in his home, but was told that due to the huge waiting list it could take up to two years for him to actually receive it.
Around the time he found out he qualified for the highest level of home care package available to Australians over 65, Graham was told he had just one to two years to live due to a serious health condition. By the time the package finally comes through, enabling his wife, Kim, to look after him properly, he may no longer be here.
“I’m a year in [waiting for the support] and he’s a year in,” says Kim, 66. “So he might get it when he’s not around to get it.”
Graham, 68, is among an estimated 87,000 older Australians who have been assessed as needing support at home to keep living independently – help with bathing, feeding, taking medications, cooking, cleaning and transport – but who are still waiting for a home care package.
Advocacy groups and federal politicians have warned this waitlist could balloon to 100,000 by November, meaning that older people are living unsafely at home, being forced prematurely into residential care, ending up in hospital or dying while waiting for support.
The government has pledged to increase the number of home care packages available from November, when its new Aged Care Act is rolled out. Sam Rae, the minister for aged care and seniors, told Guardian Australia: “In the first 12 months of the new Support at Home Program alone, we will release more than 80,000 new home care places nationwide – because we know demand for aged care services is only growing.”
But crossbench senators including the Greens’ Penny Allman-Payne and independent David Pocock say the government is failing older people by not releasing more packages before the act comes into effect. They, alongside the Coalition, are expected to move this week to force the government to bring forward the release via amendments.
“[I’ve] been calling for 20,000 of the home care packages to be released given the waitlists and the number of people who are waiting and potentially dying waiting for a package,” Pocock said. “It’s a ration system. So if you are one of the 87,000 [approved people waiting] from now to November, the only way you will get a package is if someone who currently has a package dies and frees up a package, which I just think is an appalling way to deal with older Australians who are trying to age at home with dignity.”
He said state and territory governments were having to pick up the cost.
“Our hospitals [are] full of people who otherwise could be getting support at home, or people are going into aged care earlier than they should have to.”
This is exactly the situation facing Graham, who has been in hospital for nearly three months, after a flare-up of his condition, hepatic encephalopathy, which affects his memory.
“He’s not very good on his feet so what happens is he’ll have a fall in the house and then the only way to get him up off the floor is to call an ambulance and then they’ll take him into hospital. So right now he’s in hospital … I just don’t know what to do. As we speak, he’s got himself out of bed, he’s sitting at reception, he’s waiting for me to pick him up and take him home.”
Kim wants to have him home with her, but says the hospital is not keen to discharge him given she is his sole carer, and she works full-time, as well as caring for her 92-year-old mother, who lives next door.
The at-home support would make a huge difference.
“It would be a relief that I wouldn’t be worrying about him … If he had a fall and I wasn’t home and he didn’t have his phone on him, that would be the biggest thing.
“All I think I really need at the moment is maybe the bathing … some of his personal needs. Maybe an hour or two just to get him out of the home when I’m working.
“I can cook all the food but I’m not sure if he could actually boil a jug to make a cup of tea … I came home one day and one of the elements was on in the oven. He didn’t realise he left it on. I think I’m at the lower end of the scale. I personally don’t think he needs 24-7 care, but he can’t sit at home for eight hours a day when I’m not there.”
Dozens of older people and their carers have shared their stories of difficulty before a Senate inquiry that begins on Friday into the Aged Care Act.
Among the stories shared with the Guardian include those of unpaid carers at the point of total burnout, being forced to quit or dramatically reduce work hours in order to provide care, and of older people living in unsafe conditions at risk of falls and injuries.
“My mum had a stroke last year,” one wrote in a submission to Pocock’s office. “[She has had] seven falls since last July and rapid memory loss and confusion. My heart breaks each time I leave her to go to work as she looks like a lost child but I need to work. I am super tired, stressed and worried. Mum is declining and I am terrified I will lose her before help comes.”
Allman-Payne, Greens senator for Queensland, says: “We’ve got this situation where we’ve got older Australians who’ve worked their whole life, they’ve paid their taxes, they’re contributing to their communities and now they’re being left languishing [waiting] to get a home care package … But what we know happens is if you can’t get access to a home care package in a timely way, then you start getting pushed towards residential aged care because you can’t cope.”
Kim and Graham met in 1982 while working at the same pub. They have been together for 43 years, and this is not how she pictured them spending their retirement years. But for now, she doesn’t see another path, she doesn’t want to put him in residential care, and so her only option is to just keep going until help arrives.
“We didn’t choose to be here, trust me. Trust me, none of us have put up our hand and said, you know what, at 66, I want to be going through this. And I know there are people out there probably worse than my husband.
“You just do it. I don’t know. You get tired, but they’re your family, your loved ones. It breaks my heart … It’s a bit like being a mum, isn’t it, with a newborn baby. You start living with less sleep and you work harder and you just do what you do for the love of your kids.
“I really feel like people just don’t realise the numbers out there.
“It’s got to be addressed, because it’s just going to blow up bigger and bigger and bigger. So we can’t just not talk about it, not address it. It’s not good enough. [The government] have got to be held much more accountable.”
