Sick and elderly Victorians wanting to die at home with dignity say a lack of support services in some regional towns is leaving them scared, and thousands of dollars out of pocket.
Christine Stewart and her husband Bob Bennett, who live in Beechworth in north-east Victoria, have opted for end-of-life care at home.
Mr Bennett has been diagnosed with severe pulmonary hypertension, a condition that affects arteries in the lungs and heart.
After being told he only had five years to live in 2016, he's now on borrowed time.
"My time with Bob is limited," Ms Stewart said.
"He's accepted that. I've accepted that but we should be having quality time together."
Instead, Ms Stewart says she has encountered many problems with the government's At Home Care Program, which subsidises organisations to provide services, such as cleaning and gardening, to eligible older people.
"We started experiencing problems, particularly with cancellation," she said.
The couple mainly uses the service to get jobs done around the house that they are now unable to do, and so that Ms Stewart can attend her own appointments while someone is caring for her husband.
But Ms Stewart said some services had been cancelled on the day they were supposed to take place, leaving her not only out of pocket thousands of dollars but with a difficult choice — leave household chores until the next scheduled appointment a fortnight later or risk an injury by doing the work herself.
"It's just so full-on. Your whole life is on hold, and you can't plan anything because you don't know what's going to happen," she said.
Ms Stewart said she had had to spend precious time pursuing the service providers who failed to deliver in a bid to have her money refunded, but so far she had been largely unsuccessful.
More staff needed to avoid burnout
Consumer advocate for the Older Persons Advocacy Network Maria Berry said she had heard many similar stories.
A lack of local contractors and a shortage of staff around the region are contributing to the issue.
"The complaints are they're always running late [or cancelling], but it's because they're travelling big distances and the times they're actually booked to do services, there's not enough travel time in between," Ms Berry said.
On one occasion a woman was sent to clean Ms Stewart's house from Seymour, a four-hour round trip.
Ms Berry said the lack of support for staff was forcing them out of the industry.
"They're burning out; they just can't do it."
Community living in fear
The Beechworth community has also raised concerns after the local surgery made the decision to cease its after-hours on-call service and Saturday morning clinic at the beginning of this year.
It cited "continued difficulty in recruiting doctors" as the main reason behind the decision.
Ms Stewart has utilised the service on numerous occasions for her husband and said that for many older people in the community, emergencies were not restricted to business hours.
"Once we had to wait over half an hour for an ambulance to come from Myrtleford. Bob was so close to death, his lips had gone blue, he was pale," she said.
Ms Berry echoed the concerns.
"They're not at the stage of their life where they can up and go and move somewhere else. They've got all their community and friends and people they know there but they're frightened," she said.
"They're frightened if something happens on a weekend."
More local options needed
Ms Berry has been pushing for more local services that understand the region and the community's needs.
"Local support, local training, local contracting — the whole lot has to be local," Ms Berry said.
"We want to keep older people at home for as long as we can but ... we have to support the staff to be able to do that too.
"Every regional town has to ensure there's some sort of support there."
Ms Stewart said she felt the old and vulnerable were being left behind.
"I'd have to seriously think about my own long-term health and moving to Albury because at least there's choice there."
Government vow to grow workforce
Federal Minister for Senior Australians and Aged Care Services Richard Colbeck acknowledged the pressure on home-care providers, particularly during the pandemic.
"While additional flexibility and resources have been provided through the Department of Health, providers must also work with their care recipients, their carers and families, to develop an emergency care plan, which identifies the response in the event services are unable to continue," he said.
Senator Colbeck said the number of people in the Hume Aged Care Planning Region waiting on a home-care package at their approved level had dropped by 24 per cent between December 2020 and December 2021.
"This downwards trend is expected to continue as the additional 80,000 HCPs (homecare packages) continue to be allocated," he said.
He said the government would continue to invest in the industry to grow, train and retain the aged care workforce, including in regional areas.
"The Home Care Workforce Support Program is seeking to address inequity faced in some regions by growing the number of personal care workers in rural and remote communities and offers rural and remote specific targets," he said.
"An incentive scheme for permanent placements in regional and remote areas will also increase staff retention. This will help to ensure that rural and remote aged care consumers experience continuity of clinical care and strong clinical leadership."
