IT'S THE fear of what lies ahead which is driving Deanna Mastellone to speak out about what she thinks needs changing to support voluntary carers.
Deanna is living the experience of giving up her job and spending her savings to help her elderly mother. She is consequently buried in financial and health stress as her savings whittle away and her mother's medical debts increase.
She is in her late 50s and an only child with an 86-year-old mother, Maureen, who is a self-funded retiree and suffering from dementia.
"People don't understand what it is to be a carer; they think we are having a holiday," a frustrated Deanna said.
She believes that every voluntary carer, whether they are entitled to a pension or not, should receive a carers card with the same benefits as a pensioner card.
"It's not a huge amount of money, but it would make you feel that you are getting a bit of recognition," Deanna said.
"You are saving the country a lot of money because you have given up your life to look after your parent. The card isn't a big thing, but it will make a difference."
Baby Boomer quandary
There is a very strong bond between this daughter and her mother. Even with dementia slowly destroying an otherwise bright elderly woman, Deanna works hard to find other ways to bring light to their days.
"You can never have too much laughter," Deanna said. "I used to wear them (Hawaiian shirts) every Friday into the office so now instead I dress mum up every Friday. I love to choose her clothes and costume jewellery and make sure she always looks her best."
But all this Friday fun doesn't take away from the hard facts.
"I didn't want mum to go into a nursing home. She looked after me; it's my turn to look after her," Deanna said.
"I used to make her do as much as she could, keeping her as independent as possible. Now she can't do anything for herself.
"I couldn't manage working full-time and looking after her as she would ring me 10 times a day at work."
If Deanna wanted to move her mother into a care facility she said she would have to sell just about everything she has. "On top of that, I would have to pay $1000 or $2000 a week. And then you don't get the full amount back anyway," Deanna added.
Deanna believes that getting back into the workforce is going to be very hard, but she will soon have to do that to rebuild her finances that have steadily been depleted through looking after her mum.
"I could live for another 30 years, so what about me?" Deanna asks.
But right now, Deanna's full-time job is looking after her mother, which is exhausting and ultimately socially isolating.
If only others understood
Getting her friends to understand what it's like to be a carer is something Deanna is trying to achieve through her Facebook posts.
"It sucks the life out of you. I have never known so much exhaustion," Deanna said.
But what she really wants to have happen is for the Federal Government to be proactive in making the broader community aware of what a voluntary carer does and the hardships they face.
Deanna has also noticed that with all the government forms she has had to complete as part of her mother's care, she has never seen a box to tick which says 'full time carer'. "I always have to write it in," Deanna said.
Another concern for Deanna is legal recognition of the sacrifices that carers make to take on a voluntary carer role. Where a carer has given up their work life and used their superannuation to support a parent, Deanna said they should not be out of pocket.
"I have used all my super so when I come sell the property, I should be able to get back my super which should come out of capital gains tax," Deanna said.
Will the Baby Boomers accept the status quo?
Deanna argues her peers don't want to go through what their parents are experiencing now.
"We don't want someone else wiping our bottoms, we don't want to go into a nursing home," Deanna said.
"Those that have kids don't want their children to look after them.
"Everyone in my age group is concerned. There is no point in living till your 80's and over if there is no quality of life. Many people are living to 105, but what's the point if there is zero quality of life and we are destroying other's lives to care for us."
Deanna isn't going to sit on her concerns; she is taking them to the decision makers, her local MP and ageing minister Ken Wyatt and much, much more.
"I want to create greater awareness," Deanna added. "I am fired up."
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