Beth Jackson knows exactly how long she cared for her elderly mother.
"Thirteen years, three months and 24 days."
She put her career as a psychologist on hold to move in with her mum who has dementia.
"When I got here, things were such a mess and mum was in such a state I just couldn't leave because we all deserve to be cared for," she said.
"I just couldn't walk away from that."
Beth Jackson looked after her mother for 13 years. (ABC News: Jonathan Mcnee)
Those years of around the clock caring have taken their toll.
"There were days when she would try to burn me with a hot spoon or throw boiling water on me," she said.
"A nightmare, I didn't know how hard it was going to be, I really wasn't prepared for how the system doesn't work."
Dr Jackson struggled to get regular help.
"You hear that you can stay in your own home and be cared for and have supports but the reality is quite different to that, there's not enough workers," she said.
When Dr Jackson's mum's health deteriorated over a year ago, moving into residential aged care became the only option.
"It was really difficult because there are so many levels of grief in that," Dr Jackson said.
"There is grief around mum's loss of capacity and the need for her to go into a home when I knew that's not what she wanted.
"I guess I'd made a life of being a carer for such a long time and basically that disappeared overnight."
After her government Carer Payment and allowance was stopped, Dr Jackson, who is in her 60s, was put on a JobSeeker allowance.
"The reality of that was that I couldn't afford to feed myself," she said.
"I had chooks out the back and I lived on eggs, basically."
Beth Jackson worked as a psychologist before becoming a carer for her mother. (ABC News: Jonathan Mcnee)
No longer able to work, Dr Jackson had to fight for a Disability Support Pension, which has made life somewhat easier.
But she has missed out on 13 years of a professional wage, superannuation, and holidays.
"You get all the empty words from people telling you what a great job you are doing, how you're a local hero," she said.
"The day you stop being a carer … those words mean absolutely nothing and you've got nothing to show for it, absolutely nothing."
Call for superannuation to be added to payment
Carers Australia chief executive Annabel Reid is calling on the federal government to pay superannuation on the Carer Payment as happens with Paid Parental Leave.
"To ensure that [carers] are able to have some choices around the way they retire themselves, because they've given up so many of their working years for somebody else," she said.
Annabel Reid says the federal government needs to ensure carers have "choices around the way they retire themselves". (ABC News: Toby Hunt)
Ms Reid said it was very common for carers to suffer financially.
"On average, a carer … will lose almost $400,000 in lifetime earnings because of their caring responsibility and will retire with about $175,000 less in super," she said.
"For carers who have a longer journey that can be $900,000 in lifetime earnings and $400,000 in superannuation losses."
Social Services Minister Amanda Rishworth said the Carer Payment was indexed twice a year to reflect the rising cost of living, and the federal government had invested more than $1 billion in the Integrated Carer Support Scheme, a scheme that supports carers.
On average, a carer will lose almost $400,000 in lifetime earnings after putting their career on hold. ( ABC News: Brendan Esposito)
The costs of moving into residential aged care
When most people move into residential aged care, they have reached a point where they can no longer live independently.
For those like Dr Jackson's mum, who is on an age pension, residential aged care providers take 85 per cent of the Age Pension to pay for care.
That equates to around $63 a day. It does not cover things like clothes, haircuts and medication.
"It's a struggle … there's very little left," Dr Jackson said.
Part pensioners and self-funded retirees pay an additional daily fee based on a means test, which is calculated based on income and assets.
Then for some there is the Refundable Accommodation Deposit (RAD), which is a lump sum cost charged by the Aged Care provider to cover the cost of the room.
Or you can choose to pay a Daily Accommodation Payment (DAP), which is the accommodation deposit plus interest, but paid as a daily rental cost instead of as a lump sum.
Changes to aged care are coming
The federal government's new Aged Care Act is due to come into effect mid next year.
While some of the details are still being decided, there will be an increase in the maximum RAD that can be charged from $550,000 to $750,000, and that amount will be indexed over time.
It will no longer be fully refundable when a resident leaves the facility or dies, with aged care providers able to retain 10 per cent of that deposit over the first five years a person is in care.
"The reason for this kind of scheme or new regulation is because nowadays those facilities are actually losing money, they really need a certain boost for them to operate," said Colin Zhang, who lectures in Business Analytics at Macquarie University.
He said for some Australians it will be more expensive to move into residential aged care.
"Things will be more complicated even though the government is trying to make fees more transparent," Dr Zhang said.
Dr Zhang said families weighing up whether to sell the family home or rent it out to pay a lump sum to the aged care provider should seek financial advice.
"There are tons of different calculators you can find online, called aged care fees calculators but even with these calculators people can get really lost," he said.
People who have been in a caring role for a long period may be without hundreds of thousands in lifetime earnings, an expert says. (ABC News: Natasha Johnson)
A spokesperson for the Department of Health and Aged Care said the government would continue to be the major funder of aged care and the changes are designed to improve the sustainability of the sector.
"The amount that an individual pays will continue to be determined based on their individual means," the spokesperson said.
"This ensures that individuals are asked to contribute an amount that is considered affordable for someone in their circumstances."
One expert says families considering options when it comes to care should seek financial advice. (Pixabay: sabinevanerp; license)
'You need to have really good friends'
Dr Jackson hasn't stopped caring for her mum, even though the 99-year-old lives in residential aged care.
"There are days when I go in and she's quite good and cheery and chatty but then other days she'll be staring into space and be difficult to engage with," she said.
"It's emotionally challenging … and really draining."
She says she often has to advocate for her mum to ensure she gets the quality of care she needs.
"We need to increase the [aged care staff's] capacity to care by training them better and paying them more so that you're attracting a higher calibre of professionalism."
Dr Jackson would like to see a return government ownership of residential aged care "so we've got one system everybody knows what it is, what the expectations are and so that it can be monitored."
She said with changes on the way families will need to prepare earlier and seek financial advice before moving a loved one into aged care.
And her take home tip to carers?
"You need to have really good friends, I wouldn't be here without mine. That's the truth of that."
The federal government's new Aged Care Act is due to come into effect mid-2025.