Lorraine Gentle's husband Arthur finally died of cancer in March this year, just short of their 60th wedding anniversary - and just after what his widow described as "the most terrible experience" of the Canberra health system, both public and private.
His final two weeks were only saved from what Mrs Gentle felt were terrible dealings with the health bureaucracy by the intervention of an organisation called Community Options.
But Community Options is set to close because of cuts to its funding from the ACT government.
The couple's nightmare started shortly after they went on holiday to Queensland on September 19 last year.
Arthur, according to his now widow, started feeling ill. They went to a GP but antibiotics didn't cure him, so his condition was escalated through the Queensland system until he was finally diagnosed with mesothelioma, a rare cancer often caused by asbestos exposure. It attacks the lungs and other organs.
The couple spent nine weeks in Queensland before opting to return home. He knew his death was imminent and he wanted to die at home in Canberra. Their car was trucked back to Canberra and on November 19 last year he was flown back.
And that, according to Mrs Gentle, was where the ACT system couldn't seem to cope with her husband.
She said he was put in a renal ward at Canberra Hospital even though he had cancer. He was woken in the early hours of one morning so another bed and patient could be moved into his room. He shared a ward with two women with dementia.
"And all this time, the pain was horrific," Mrs Gentle said.
All in all, he spent the last four months of his life twice in Canberra Hospital and once, over Christmas, in the National Capital Hospital, each interspersed with being looked after at home, with his wife administering morphine.
Some community care nurses went to change the syringe system for morphine but Mrs Gentle then tended him through the day and night, including the injections which, she said, were never enough: "At no stage did we have his pain under control."
She was in despair. The couple's holiday turned very quickly into the certain prospect of one of their deaths after nearly 60 years of marriage.
And she found that dealing with her dying husband at home was impossibly hard.
"I was getting pretty desperate. I may have been a nurse but I'm also 82 years of age."
A few weeks before he died, a nurse mentioned Community Options which describes itself as "working across the ACT for more than 30 years, Community Options connects any Canberran who needs help to the best support options available to them.
"If you don't know who to turn to, we'll point you in the right direction."
Mrs Gentle said Community Options sent Olive Doig, its long-standing palliative care case manager - and the situation was transformed: "She spent time with Arthur around his bed. She organised a hospital bed and care to happen the next day."
Mr Gentle was then admitted to the Clare Holland House hospice where he died on March 7, just short of their 60th wedding anniversary.
Part of the difficulty, Mrs Gentle felt, was that the onset of her husband's death was so swift that the system couldn't keep pace.
"The issue for the government is that they want people who are terminally ill to stay at home and be nursed at home but there's no facilities to help them do that, especially at short notice," she said.
But Community Options is winding down: "Community Options to close as Canberra's flexible support goes unfunded," an announcement said.
"Community Options will continue supporting existing clients while arranging safe transitions through to 31 December, 2026. Client services and client-service positions are expected to end by that date, with voluntary solvent winding up expected to progress in March, 2027."
It has helped people like Arthur Gentle wrestling with the system at the end of their lives, but also women and babies in difficulty, perhaps because of domestic violence.
The programs have been funded by the ACT government but the money has been cut dramatically in recent years, Brian Corley, its chief executive, said.
Three years ago, he said, they had 50 staff and $20 million for its programs from federal and ACT sources. Now, it's a quarter the number of staff and $1 million for programs.
"There are huge gaps in the system that we used to fill and have filled over the years for people who are most vulnerable, and we can't see any pathway or any strategy from the ACT government to address those," he said.
The ACT government said: "The Health and Community Services Directorate (HCSD) continues working closely with Community Options and relevant stakeholders to consider future service delivery options and ensure appropriate transition arrangements are put in place for the programs it funds - the Women and Newborn Community Support Program and the Palliative Care Project.
"Community Options has indicated that it intends to undertake an orderly and respectful transition from services and work collaboratively with the government through this process."
The ACT Minister for Health Marisa Paterson said: "The ACT government recognises that uncertainty about the future of any service provider can be concerning for clients, families, carers and staff. Our focus is on the people who rely on these services and enabling them to receive the support they need.
"We will continue working closely with Community Options and other stakeholders to examine options for how services are provided when the organisation closes and ensure appropriate arrangements are in place," Dr Paterson added.
Lorraine Gentle said she was "devastated" by the upcoming closure.
"For me and for Arthur, they were the only ones who could help us. How will it be for other people in our circumstances?" she said.
