Carer's small voice to be heard in big dementia world
WHAT started as a battle to give Deanna Mastellone's mother the best possible care in her last years of living with dementia has become a passion she is taking to the world stage.
Deanna will speak at the international Alzheimer's Disease and Dementia Conference in Rome this month where she will deliver her speech, Changing the world for all carers; the silent sufferers of the global dementia pandemic.
She will be using frequent flyers points and the visitor bedroom at her cousin's home in Rome to make it possible for her to deliver to a world audience her message that dementia carers need given the best possible resources to help them deliver the necessary care.
"I want every location around the world to have a carers cheat sheet and ensure all locations create similar support services for dementia carers,” Deanna declared.
It's her personal journey over the last six years that has informed Deanna's ideas.
In 2014 Deanna was forced to resign from her job when she first took on caring for her mother. "Companies need to be aware that just because a person may have a big family doesn't mean they have huge support,” she said. "It usually falls on one. They need to be far more flexible with people.”
The costs of living escalated but Deanna was unable to secure any financial help. She couldn't afford to pay for help and didn't have family to turn to.
Deanna said Centrelink lost her home care application paperwork, four times. On numerous occasions Deanna wrote to State and Federal ministers to have her case heard.
"I am still paying off $8000 of respite care so I could have a rest,” she added. "That should be tax deductible.”
Deanna spoke at a Aged Care Royal Commission round table. "I only had two minutes to make a speech and I flogged myself to get it right,” she said. "I managed to get home care packages and carers into the Terms of Reference because it was only going to be Aged Care facilities.”
Even though her mother died last year Deanna still has fire in her belly to change the world. "What they are doing to us is criminal when we are saving Australia $60 billion per annum for all our sacrifices and paying for everything,” she said.
Throughout Deanna "overwhelming” journey she has encountered many problems, but has fought to find solutions to many of them.
"When they are first diagnosed, where do start? You haven't got a clue,” she said. There were some many things she discovered had to be done and authorities to contacted.
"I have written a carer's cheat sheet which has taken me six years to put together from when mum was first diagnosed,” Deanna said.
"It's a full-time job just trying to get through the bureaucratic minefield. In the last two years I have been preparing an Ideal Carer's World of what the world should actually look like because carers health and financial security is being destroyed.
"I have come up with a whole heap of strategies that governments can implement. With the Cheat Sheet, what I want is that every location in the world provides a similar document for the services they have in their location.”
Deanna has been active across various social media platforms. "I see so many people suffering and it breaks my heart so I share my knowledge and expertise,” she said.
"I want to create far greater world awareness. I want people to understand is dementia is like climate change because it's not going to, it is already affecting everyone on the planet.”