When Yvonne Cuschieri's son Steven developed a brain tumour in 2013, invasive surgery left him paralysed down his entire right hand side.
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Steven was cared for by his parents at the family home in Queanbeyan, but when steroids caused his weight to blow out to 120kg, Yvonne and husband Joe struggled to get him in and out of bed, and into the shower.
Yvvonne and Joe were offered a six-week break, but it meant they would have to drop Steven, who was 53, off at Queanbeyan Nursing Home, where he would share a room with two men - one aged 92, the other aged 88.
Steven went to the nursing home, but Yvonne didn't drive him there.
"I just couldn't bring myself to drop my son at a nursing home," she recalls, through tears.
"I'm 76 myself now and I would hate to go. He was only 53. It was just so wrong."
In a sad turn of events, Steven suffered a fall while in respite care at the nursing home. He died from a bleed on the brain within hours of tumbling from his bed.
It has been Yvonne's dream since Steven's death to build a respite home in Queanbeyan for the chronically and terminally ill. A place where parents, family members and carers can receive a much-needed break while their loved one is cared for in "a home away from home".
She's devastated by the thought of young people who are mentally well but physically disabled being cared for temporarily in facilities built for the elderly.
"My heart breaks just thinking about it," she says.
"We need to do better for them."
As the founder of the ACT Eden-Monaro Cancer Support Group, Yvonne worked tirelessly to raise funds for cancer sufferers and their families for more than 30 years. But this dream is specific to Steven.
That dream came one step closer to reality this week with the launch of brand new charity Respite Care for QBN. At the head of the new organisation is Paul Walshe, ex ActewAGL staffer, former ACT Eden-Monaro Cancer Support Group board member and long-time friend of the Cuschieris.
Respite Care for QBN will immediately start to fundraise the $1.5 million required to build a six-bedroom respite care facility in Queanbeyan. The dream is to open it up to people aged 18 to 59 suffering from a terminal or chronic illness.
Fundraising will include everything from Bunnings barbecues and raffles to requesting donations online. Setting up a donor program and calling on local business support is also part of the strategy but, according to Paul, Queanbeyan Palerang Regional Council and the state and federal governments will also need to play a key role.
He's ready to head into 2019 "in lobby mode".
"Our dream is to realise Yvonne's dream," Paul said.
A parcel of land in Queanbeyan has been flagged as a potential site for the new six-bedroom facility and Paul will continue to meet with key stakeholders including CarersACT, Palliative Care ACT and Southern NSW Local Health District.
"We're confident we can raise the money for the build of the facility but what concerns us is the ongoing cost of running it," Paul said.
"We estimate it'll cost about $1m every year for two full-time nurses to staff the facility, 24 hours a day."
Paul said that if built, it would be the first purpose-built respite facility that he is aware of for the chronically and terminally ill in Australia.
He said Yvonne's dream includes developing a model that could pave the way for the construction and management of future respite care facilities across the nation.
"There are in excess of 4500 unpaid carers in the Queanbeyan Palerang region," he said.
"Many people are forced to become carers very quickly or even in an instant if something devastating like a car accident happens.
"And in many cases, when they need a break, they're at their wit's end and end up calling an ambulance.
"If we can convince the government we're taking some of the burden off the hospital system, we're hoping some funding will follow."
For further information and to show your support head to www.respiteqbn.org.au
