‘Frustrated and helpless’: Couple left waiting 14 months for home care payments

A couple from Melbourne have been waiting more than a year to receive their Level Three Home Care Package, leaving them feeling frustrated, helpless and let down by the government.

Rae and Barry (Baz) Telfer have been waiting more than 14 months for the government payment to roll in, despite claiming to have been told they are eligible for the annual subsidy of $33,000, which is paid directly to the chosen care providers of those with intermediate care needs.

Rae is currently her husband’s full-time carer and says Baz, 75, who is living with dementia, is in desperate need of the added support, which would help the couple cover the cost of things such as personal care, meal preparation, nursing support and support with changes to memory or behaviour.

“The limbo of this promised package is in our minds every day,” Rae said. “If we are eligible and we qualify – as all the correspondence from the government has said – then it’s wrong that we have to wait for so long.

“Living with dementia is already full of changes happening all the time, challenges, stress and uncertainties. We don’t need more uncertainty and when you can’t access that help you’re just left with frustration, helplessness and disappointment.”

The couple, who have been together for 52 years, still live in their family home, where they wish to remain for as long as possible, and the support services available through the Level Three package would help them to do so, while improving the overall quality of their lives.

“It is heartening to hear announcements from the government at budget time and just this week about increases in the numbers of packages and increases in funding,” she said. “But we want to see these promises turned into actions and Baz needs it now.”

Rae added: “Baz and I want to make the most of the time we have together but every day without the support impacts on his ability to live as well as he possibly can in the time he has left.”

After Baz’s diagnosis in December 2015, Rae took on the responsibility of becoming Baz’s full-time carer, helping her husband to dress, shower and get around.

The couple said they have also had “invaluable support from Dementia Australia” over the years however, without the added support from the Home Care package, Rae struggles to make time for herself.

She added: “The first thing every carer is told is to make sure you look after yourself but to do that you need support – you can’t focus on yourself first because you are so busy supporting the person you are caring for.

“As much as I love Baz, I also need to be able to plan some time for myself and my own activities. Every day I need to be here for him to plan our days together, from what and when to eat, what to wear, what’s on for the day and how we are going to get there.

“I need to be at every appointment with Baz to help him to respond to questions and take notes as he will struggle to recall the details after.”

Home Care Packages are coordinated packages of care and services which are designed to help Australians to live independently in their own homes for as long as possible.

There are four levels of home care packages catering different levels of care needs, ranging from basic care needs, which include every day tasks such as housework, to those with high-level care needs.

Maree McCabe, CEO of Dementia Australia, said that Home Care Packages give people living with dementia the choice to stay in their own homes for longer, as well as improving their quality of life and reduces the overall cost to the health and aged care system.

“More needs to be done to reduce the waiting time, particularly for people living with dementia so they can make their own decisions about their care before their symptoms impede their capacity to do so.

“With the additional packages announced in the budget and this new $100 million funding boost we hope to see a significant decline in people on the waiting list and all people impacted by dementia will start to receive the support and care they deserve.”

In Australia, there are more than 436,000 people living with dementia. It is the second leading cause of death in Australia and the leading cause of death of women.

What are your thoughts on this story? Have you, or anyone close to you, been affected by delays with Home Care Packages?