A Wagga woman says she spent the past three years feeling frustrated and alone as she struggled with her seriously ill husband's care provider.
Lexene and Ken George left the provider earlier this year after growing tired of "constantly being told no" in their fight for even a reasonable level of care.
They say it was a nightmare to navigate the complexities of home care packages with an unhelpful provider.
"There were just so many obstacles. We were told, 'You can't do that. You can't do that'," Mrs George said.
"It just got to the point where I knew that I was just always [going to be told] no. I thought, 'This is crazy'. There was no extra help."
Their journey with Australia's vexed aged care system began in early 2017 when Ken George, who has Parkinson's, was deemed eligible for a level three home care package.
"We got a phone call to say we'd been approved for the package. To be honest, I had no idea. I didn't understand," Mrs George said.
Mr George said he then received a cold call "from out of nowhere" from a Wagga care provider.
"This bloke rings me up and says you've been approved for a level three package and we'd like to come and see you. And that's where it all started from," he said.
The George family would undergo a three-year battle to have Mr George's basic needs met, which only became worse as his condition deteriorated and his package was moved to level four.
Mrs George said the most simple of requests were denied, such as using some money to purchase QV cream which Mr George's doctor had recommended he use.
"When I asked [the co-owner of the care provider] she said, 'No, he can use soap'," Mrs George said.
Mrs George asked numerous times to have a few pairs of shoes included in the package each year, because one of Mr George's feet had become crushed and he was having up to 20 falls a day.
"We had community nurses coming around. They were coming almost every day because he kept falling over because his shoes were falling apart because we couldn't afford it," Mrs George said.
Footwear is not necessarily included in a home care package, but the Georges say their provider was unwilling to listen to Mr George's specific needs.
Home care packages are designed to be consumer-driven, but Mrs George said her husband's provider was unwilling to be flexible even around Mr George's showering schedule.
"Because of COVID, [the care provider owner] said they wouldn't have the staff," Mrs George said.
"But before I even asked, I'd asked the staff, 'Are you working long hours?'. And they said they'd only had two clients in the whole day and they'd never been so slow at any time."
There were other, more serious incidents before the Georges left the provider in April this year, including several occasions where Mr George's port - which pumps medication into his body - became dislodged.
"When there was an emergency when his tube comes out ... I'd ring up and ask for extra help. And the answer was no," Mrs George said.
"I needed extra help ... I could not deal with him as a single person. I'm not young.
"If [our son] Will wasn't available, I was on my own with a person that was almost a hospital case," Mrs George said.
Mrs George recalls one harrowing morning where her husband of more than 40 years didn't recognise her.
"He made a mess from his bed, two toilets, the whole hallway. I was beside myself," Mrs George said.
"I went down there [to the care provider's office] to ask for help. They said they'd have someone out within two hours. And nobody came."
Home care packages are designed to help older people with complex needs to live in their own homes for longer with the help of federal government subsidies, which range from $9000 to more than $50,000 per year.
But waiting to be approved for a home care package has been likened to a lottery, particularly for those who require the highest level of care.
Figures from the Australian Institute of Health and Welfare, released this month, show that at the end of March, 103,599 Australians were waiting for a home care package they had been approved for.
IN OTHER NEWS:
Once a person secures a package, however, they then enter a lottery of another kind - finding an appropriate provider to manage their care.
Mrs George said the Wagga provider who called her husband made it seem like they had no other option.
Associate professor in ageing at Sydney University Lee-Fay Low said Mr George's experience was not uncommon, but it was difficult for the aged care watchdog to regulate providers.
"As far as I know, the Quality and Safety Commission doesn't pick up on poor provider behaviour," Dr Low said. "Unless this person complains, no one really knows that this happens."
Dr Low said while some providers could be breaking the law, a lot of the negotiation around care and package flexibility was subjective.
"People usually don't want to complain about the [people] who come and help them," she said.
"They do get frustrated and confused or find it difficult to negotiate with the provider about certain things."
Dr Low said many more for-profit home care providers had entered the market in the last three to five years.
"It has always been concerning, but we've never really had any metrics around quality," she said.
"We know that the home care providers bring the clients into the office for the accreditors to interview them, and obviously they're not going to bring in the ones who are unhappy with them."
Ken and Lexene George's son Will has now taken over managing his father's home care package independently.
"This is quite a daunting thing for people that are most vulnerable, to have to go through this rigamarole," he said.
"I think the biggest thing is making sure that people are aware that their provider is providing what they say they are."