A week after Vera's* husband died, palliative care rang to say a support worker was coming to do the work that would have allowed him to spend his final days at home in Sussex Inlet on the South Coast of NSW.
"[Wollongong] hospital said they had been in touch with palliative care and the district nurses, and they'd be in contact when we got home [after his operation]," she said.
"We brought him home, and nobody got in touch.
"I ended up ringing palliative care to see what was going on. They sent a nurse out who sat at the bottom of the bed and told him what was going to happen to him.
"That was all she did."
In addition to terminal pancreatic cancer, her husband had gout in his foot, leaving him unable to walk without Vera's assistance.
As she was too slight to support his weight, a nurse came to help shower him, and could see the couple needed help. A fortnight later, another nurse came to assess what adjustments needed to be made to the house to enable her husband to continue living at home. Then, radio silence.
"I'd promised my husband faithfully that I wouldn't put him in a nursing home," Vera said.
"In the end I had to. I couldn't get him out of bed."
Although it happened three and a half years ago, Vera began to cry as she described her late husband's final weeks.
"He didn't know where he was," she said.
"He kept saying 'Where am I? Whose house is this? I don't want to be here. Take me home.'
"I'd promised my husband faithfully that I wouldn't put him in a nursing home. In the end I had to. I couldn't get him out of bed."
- Vera, Sussex Inlet resident
"I sat with that for three and a half weeks until he finally died."
Although Vera's story is one of the worst, she's not alone.
Carol Brown's husband Tom has had cancer since 2004, and has also had two strokes. He is completely reliant on her. Up until recently, the couple had been getting by with four hours a week worth of assistance.
"That would get Tom a shower, and maybe a bit of housework," Carol said.
"As Tom got worse, I was really struggling. It's hard work."
She said the process for getting assistance was daunting.
"You spend all day on the phone being pushed around from company to company," she said.
"Then somebody comes out an does an assessment. They said we should be on a higher level of care.
"Then the government has to release the package, and that's where the problem lies. They only let so many packages out.
"And there are so many people in this area where the partner dies [before they get help], because they're waiting that long, or they're recommended a level 3 and they get a level 1.
"And it's a help, you're grateful for whatever you get, but it's not enough."
"There's a 12-month waiting list - a lot of people could be dead by the time their package comes through. Yes it's going to cost the government money, but they find it for everything else. We've done our time working. And it gives the younger people jobs. A lot of people can't stand up for themselves, and that's what I want to do."
- Carol Brown
Carol said she worried for others who aren't able to be as tenacious as she had to be to get extra support for her husband.
"I know I'm bossy, I'm pushy," she said.
"But what about all the old people who aren't? There are a lot of people out there in their 70s and 80s trying to get some help. This is retirement area, people move down here to retire, then they can't get any help."
She said she wanted the government to be more open-handed with home support packages for older people.
"There's a 12-month waiting list - a lot of people could be dead by the time their package comes through," she said.
"Yes it's going to cost the government money, but they find it for everything else.
"We've done our time working. And it gives the younger people jobs. A lot of people can't stand up for themselves, and that's what I want to do."
There are a number of different agencies, at different levels of government, that provide support for seniors.
Home Care Packages, like Carol and Tom's, are managed through the Australian Department of Health.
A Department of Health spokesperson said subsidised Home Care Packages were meant to keep seniors living at home, and had four levels of support, ranging in cost from $8,800 to $51,100.
The approximate wait time for a Level One package (lowest level of support) is three-to-six months from approval.
The wait time for all other packages is a year or more.
"Packages are assigned based on a person's approval date and assessed priority and as such, wait times experienced by people are similar across Australia," the spokesperson said.
"Wait times for individuals assessed as high priority are significantly quicker to ensure access to care for those that need it most."
There are about 34,000 packages available nation-wide, and about 93,000 people already receive home care packages.
1934 of those are in our health region, which also includes the Illawarra.
About 3,792,064 people in Australia are aged 65 or older.
*Name changed.
