On her 68th birthday, the best present Christine Stewart could receive was confirmation of respite care for her husband.
But that did not come on Friday, and neither did the much-anticipated Royal Commission into Aged Care final report.
Ms Stewart cares for her husband, Robert Bennett, who has severe pulmonary hypertension and is on oxygen 24/7.
The couple of 23 years moved into Beechworth from a farm in Wooragee and had to move their wedding to the Wangaratta Hospital grounds in 2017, on a day "they nearly lost" Mr Bennett.
The 87-year-old, who has run operations for the CFA for some of our region's biggest fires, wishes his body kept up with his mind.
"It's frustrating when you can't do the things you used to," he said.
"It's frightening when you can't rely on the regulator to give you oxygen. You don't know when it's going to run out, with no warning."
Mr Bennett had an incident a few weeks ago where the power went out in the middle of the night.
A power-generated machine that produces oxygen stopped operating, with only the bottled oxygen being the back up.
The regulator was broken and now a new one has been secured to show oxygen levels, which should have been provided in the first place.
"Bob is on liquid morphine from Albury Wodonga Health palliative - they've been excellent - and Bob wants to stay here until he passes," Ms Stewart said.
"He is becoming more frail and needs someone to be with him so that I can go to the chemist, shopping, dentist, eye specialist - I need three hours away each week to do these things.
"I'm due for a double-knee surgery and that means putting Bob in respite, so I've been ringing around. The earliest available is September."
Providing more services in respite will allow more people to stay in their homes, the Royal Commission into Aged Care identified in its interim report.
Big dollars for not much
Currently, the couple get two hours of cleaning done once a fortnight, plus some other services through a home care provider.
They waited 15 months for their level-three package, after initially receiving assistance through the lower-level Commonwealth Home Support Programme in 2018.
"We were on that for about a year, then Bob gets a letter in March (2019) saying 'you're eligible for package two', but it just says you're in the system," Ms Stewart said.
"Then Bob had spinal surgery down in Melbourne, because he had two vertebrae fall apart, and one pierced his spine.
"When we got home, the pain continued, and we started phoning to have him reassessed. I said, 'Where is the package? You offered it in March, he's had surgery, his health has deteriorated'.
"We rang about eight times and just got nowhere. Then I got onto a woman in Canberra and we finally got a letter in April last year, saying 'You're in the system'.
"This is the start of the paperwork.
"You start ringing around providers, and the minute they hear you have a package, well - we had one provider come to our door on a Friday night, saying 'here, sign the agreement'."
Since the package started in June last year, Ms Stewart has compared the high charges and fees with friends' statements.
"Some use contractors for everything, others call you a partner - they'll teach you how to use their software but they'll still take off a large fee," she said.
"We get $700 a month taken straight off - services we actually got one month were only $315. They say, 'Oh, we've got insurances'. They've got that word 'case management'."
Ms Stewart said package and care-case management fees needed investigation, being a similar amount each month no matter the number of services provided.
"Home care assistant staff, who do cleaning, come from many kilometres away outside the shire, and tradespeople have to be accredited with the provider and pay for this accreditation," she said.
"This takes months and makes it unattractive.
"We have insisted that local people be used where possible so that we don't get charged extra for travel time and mileage at $1.50 per kilometre."
A friend in Wodonga was charged fees for an activity he missed because he was in respite.
"His daughter checked his statement and they just automatically had this $98 charge each week," Ms Stewart said.
"If you phoned yourself you can be picked up by a bus, given a meal and enjoy social activities for a subsidised cost of only $18 per person.
"His daughter is chasing a refund and keeping a close eye on things from now on."
Dying in wait of help
The couple feel grateful to have a package; during the 12 month period ending in June 2018, more than 16,000 people died waiting for one.
Ms Stewart fears this will be the situation for a terminally ill person she knows, who has months left but has been told the wait could be up to a year.
"They've got to have a better system, where people like them can get help straight away," she said.
"The last funding was for 10,000 packages. We need billions of dollars to knock the waiting list down for around 100,000 people."
Ms Stewart wants her husband to stay at home, after her father died of sepsis in a nursing home in Southern NSW 10 years ago.
"He had a scratch, and a week later he was dead - he was the healthiest in his section," she said.
"When I spoke to him, he couldn't speak - I went, how can a scratch end up in that?
"He was rushed into emergency, the nurse worked on him and said he was severely dehydrated. He was too far gone.
"The aged care facility admitted they had breached their duty of care."
Whether it be in residential facilities or in their own homes, many older Australians die prematurely because of neglect and the Royal Commission linked this to an "ageist mindset".
This is perhaps no better evidenced than by the response of the Melbourne surgeon who operated on Mr Bennett's spine.
IN OTHER NEWS:
Ms Stewart, having been told surgeries had run late and they should return in a month's time, stood her ground.
"He crossed his arms and went, 'Look at you, you're aged and frail. There's younger people that need it more than you'.
"He went away, came back and said, 'In fear of litigation, be back at 10 o'clock'.
"Surely we deserve better treatment in our senior years than this?"