There's no denying the effort and lengths Dave Loew went to as his mother's full-time carer to ensure she stayed at home as her health declined. But it also came at the cost of his own health.
His story highlights the need for carers to take a break too.
Dave, 73, had lived with his mother Maria Loew for 11 years in a small flat in Balmain, NSW. They were extremely close, and Maria was his biggest supporter - she helped him write his book, and also listened to the recordings of what would become his new album.
While she was in good health when they started living together, by the end she had dementia, and was physically incapacitated. Dave had to get up multiple times in the night, as she had frequent faecal incontinence, vomiting episodes, would shriek and cry, and was extremely disoriented. She passed away on April 19, aged 101.
Last year, Dave was diagnosed with prostate cancer. He underwent radiation therapy and sometimes felt sick from the treatment. This put him into the extremely difficult situation of being a sick, older person caring for another sick, older person.
Dave's mum was on a Level 3 MyAgedCare home care package - the second-highest level. This covered having someone to help clean and on the odd occasion, help Maria shower.
Three weeks before she died, Maria urgently needed more personal care assistance, for example to help wash her and help her go to the toilet. However, the funds from the package had been expended.
Maria was reassessed and Dave was told she would qualify for a Level 4 package, but it would take at least six months until this would be available.
So Dave contracted a private care worker at $50 an hour. The worker came twice a week for the next three weeks - six visits - until Maria died.
If Maria had lived another six months, it would have been financially prohibitive for Dave to keep hiring someone privately.
He made the difficult decision to let his mum stay at home as that was always her final wish - she did not want to go into a home.
Unfortunately, Dave didn't have anyone else around him for support.
"I was forcing myself physically to do it - they [the people receiving care] become like a child again," he said.
He tried to take breaks, to no avail, recalling one time that he did try leaving, just for a coffee.
"Mum would ring after 10 minutes," Dave said. "How could I have a break? "I became selfless."
As a way of trying to stay sane, Dave got creative. The acclaimed musician worked on his new album, For the Love of the Cello: A Fifty Year Career Celebration.Maria heard the music before she died.
During the COVID-19 lockdowns, Dave also wrote an autobiography, I am Cellist, with the help of his mother.
Sadly, Dave's story is not unique. Many others have found themselves in similar situations.
Next year, the Home Care Package Program and Commonwealth Home Support Program, among others, will be replaced with the one Support at Home Program. It is a response to the final report of the Royal Commission into Aged Care Quality and Safety which was critical of the home care sector and made a number of recommendations to improve the care of older people.
Feedback is still being sought, while other reform projects are being piloted.
Carer Payments and Carer Allowances are available, but they are means tested.
The most recent data from the Australian Bureau of Statistics shows that in 2018, there were 2.65 million carers, representing 10.8 per cent of all Australians. Of these, 3.5 per cent were primary carers. The most common reason primary carers gave for taking on a caring role was a sense of family responsibility (70.1 per cent of all primary carers).
Carers Australia's 2021 Carer Wellbeing Survey found carers are 2.5 times more likely to have low wellbeing than the average Australian, with 55 per cent having low wellbeing compared to only 20 per cent of the broader population.
It found the wellbeing "gap" grew larger as carers aged, and wellbeing was poorest among carers aged 45-54, among whom 66 per cent had low wellbeing.
"Carers are at greater risk of low wellbeing if they have more complex, time consuming or otherwise challenging caring obligations: 60 per cent of those caring for a person who needed high or very high levels of assistance with daily functioning had low wellbeing, compared to 38 per cent of those caring for a person with relatively low daily assistance needs," the report found.
"The wellbeing of carers tends to decrease the longer a person has been a carer, and increase once a person ceases having caring obligations."
The Carer Gateway is a federal government program providing services and support for carers. This includes respite care.
A tips and information section on its website provides tips for self-care, particularly around stress, such as anti-stress exercises, and seeking emergency respite care. There is also a page addressing the need fo carers to look after themselves, including reminders to stay physically healthy and seek out mental health professionals if they are struggling.
It also lists reasons carers don't ask for help, such as having no time to learn or search for support services, people not thinking they are a carer, pride in not wanting to appear weak or needy, and privacy.
"Taking care of someone can be stressful, and sometimes you might feel anxious, angry, frustrated, resentful or sad. It's important that you find ways to manage your stress and stay mentally healthy," the website says.
"It can be easy to keep pushing yourself until you can't push yourself anymore. You might become ill or be too stressed to continue care. Taking care of yourself every day and taking regular breaks can stop this from happening."
- For the Carer Gateway, click here or call 1800-422-737
- For information about representing the needs of carers, visit Carers Australia here or call 02-6122-9900
- For the Ageing and Aged Care Engagement Hub, click here
- For advocacy for people using aged care services, call the Older Persons Advocacy Network on 1800-700-600
Need to talk?
- Beyond Blue: 1300 22 4636
- MyAgedCare: 1800-200-422 or click here