In the mid-1980s, Marlene McClelland was looking out at the water on Sydney’s Coogee Beach when she met the love of her life.
- Survey shows carers are almost twice as likely to report low wellbeing as other Australians.
- Marlene McClelland, who is a full-time caregiver for her husband, says it can sometimes create a feeling of isolation
- Carers ACT’s Lisa Kelly says there aren’t enough respite homes nationally to meet demand
“It started with a simple ‘hello’ and then we realized his office was across the street from mine,” Ms McClelland said.
Marlene and Greg McClelland hit it off and for the next few weeks he took her on a date every chance he got.
“What really attracted me to Greg is that he is (a) very old-fashioned gentleman,” Ms. McClelland said.
“As he crossed the road, he held my elbow, and not many people do that now.”
The couple have now been married for 35 years and live in Canberra, with Mr McClelland having enjoyed a successful career in the Australian government and Mrs McClelland as an accountant.
Proud self-funded retirees, they should live the kind of life those who are still working dream of.
But in 2019, Mr McClelland was diagnosed with an incurable neurological condition called frontotemporal degeneration disease (FTD), which causes symptoms similar to dementia.
There is no cure, and no way to stop the progression of the disease, which continues to spread to more parts of the brain.
From accountant to caregiver
“At first I was in denial mode,” Ms. McClelland said.
“Knowing that there is no cure really hurt me, because we are a team, we have dreams together and I felt like I had been betrayed by this disease.”
Since the diagnosis, Ms McClelland has been a full-time carer for her husband and is now one of more than 2.5 million unpaid carers in Australia.
This group constitutes one of the poorest, loneliest and most overworked cohorts in the country, experts say.
THE latest national survey on caregiver well-being released this month collected responses from more than 5,000 caregivers.
The study found they were almost twice as likely to report low well-being as other Australians, and were much more likely to report regularly feeling lonely – at 38.6 per cent, compared to 19.3 per cent. hundred of non-carers.
For Ms. McClelland, the already mammoth task of caring for her husband became even more difficult in August 2021 when he was diagnosed with a type of cancer known as non-Hodgkin’s lymphoma.
“I couldn’t take care of Greg (and myself) and I really needed someone to step up,” she said.
Carers ACT, a government-sponsored support group, came to the couple’s aid.
They were able to find a caregiver to care for her husband while Ms. McClelland underwent chemotherapy and saw her cancer specialists.
Her cancer is now in remission, but Carers ACT still supports her, this time through one of its respite cottages – small homes staffed by support workers who care for people aging or with dementia, to give give their loved ones a short break.
As well as helping her recover from chemotherapy, Ms McClelland said the cottages gave her time to revisit what made her happy.
“I have to have my own identity outside of my role as a caregiver,” she said.
“I play golf, go to my Spanish class for mental stimulation, and go for walks.”
Supply does not meet demand
There are only two respite cabins in Canberra and Carers ACT chief executive Lisa Kelly said nationally there simply weren’t enough to meet demand.
“There is more demand for respite than there are beds, and we need better financial support for respite,” she said.
Ms Kelly said there was almost no respite support for carers of people with complex mental health problems and neurodivergent people.
She said most staff at respite cottages were not trained to handle these conditions, meaning if these caregivers needed a break, they had to rely on family or hire expensive specialist caregivers.
“We have heard stories of carers unable to go wedding dress shopping with their daughter because they were unable to find alternative care for their son with mental health issues,” said Mrs. Kelly.
“No parent should have to make this choice.”
She said Carers ACT had lobbied the ACT Government to build a specialist respite center for people with mental health problems.
But Ms Kelly said she was not holding her breath that the money needed to fund such a center could be released in the near future.
Reach out during National Caregivers Week
This week is National Carers Week, which Ms Kelly said has shone a spotlight on a group that often feels invisible.
“In fact, people don’t stop and say to a caregiver, ‘How are you?’ Not ‘How is the person you’re caring for?'” Ms. Kelly said.
“Caregivers must be seen, they must be recognized.
“We all know a caregiver. This week, every week, we should reach out to them.”
Ms McClelland acknowledged that being a full-time carer could sometimes be isolating.
“As a caregiver, we always put ourselves last, we put the person we are caring for before ourselves,” she said.
“It’s quite intense and as an unpaid carer we do it out of love.”