Residents like Yvonne Cuschieri and Paul Walshe have been lobbying, fundraising and working towards opening the centre for more than four years, with big wins so far including a $750,000 commitment from the NSW government towards building costs, a matched promise from the federal government and a site from the Queanbeyan-Palerang Council.

A 30-year lease is due to be signed for a site on Ross Road next month, designs are being drawn up, and progress made.

While it seems like the puzzle is almost complete, Mr Walshe said Respite Care for Queanbeyan, the charity responsible, needs certainty government will find at least some of the centre's running costs before they move ahead.

The dream is for a six-bed facility that will allow for care for people aged between 18 and 59 with a terminal illness, and Mr Walshe estimates it will cost $1 million a year to run.

Mrs Cuschieri founded the ACT Eden-Monaro Cancer Support Group, but it was the death of her son Steven in a nursing home aged 53 that led her to realise the need for respite care for young people with terminal illnesses.

When caring for Steven became difficult for Mrs Cuschieri and her husband in 2013, a nursing home was the only option, and it wasn't the appropriate care or environment.

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While respite care is available for people with disabilities and funded through the National Disability Insurance Scheme, there is a gap for people with terminal or chronic illnesses to support them and their families.

"It seems to be like a tennis match, the federal government says it is a state issue, the federal government says it is a state issue," Mr Walshe said.

"This is what it has been like for the last 18 months going back and forth."

Respite Care for Queanbeyan don't expect that government would fully fund the ongoing costs, but need certainty to allow for conversations with philanthropic bodies.

"We've always said this is a government, business and community project - they're the partners in it.," Mr Walshe said.

"Until I know what my starting point is, which is what the governments can provide, there's no point in talking to [the charity foundations] further."

Mr Walshe is calling for a way to cut through bureaucracy and give Respite for Queanbeyan certainty about where they really stand.

"I can take bad news, if governments turn around and say there's no funding available at least I know.

" At the moment I seem to be going around in circles and no one can commit to me to sit around a table and have a conversation about it and see if we can work out something."