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Beyond 50 Magazine
Stand by me
Looking after our elderly parents or partner is something many of us don’t think twice about, but when the burden becomes too great, who will care for the carer?
When free-spirited Sandra Hillard flew to Europe from Melbourne in 1969, she didn’t know that more than two decades of adventure – living in London, Paris, Canada and Israel – lay ahead of her. When she returned to Australia in 1993 to care for her parents, she also didn’t know what lay ahead. |
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“I was naïve,” says the 63-year-old travel enthusiast, who for much of the next 12 years could barely take leave to walk around the block. Yet at the time, she felt there was only one decision she could make.
“I wouldn’t have been able to have had the life I’ve had and travel as much if it hadn’t been for mum and dad and their emotional support. I never felt obliged to come back to Australia,” she says, of finding out her dad, Len, had cancer. “There was never any pressure put on me but I felt I had to do it. I made the conscious decision to step into the carer’s role.”
According to the 2003 Australian Bureau of Statistics Survey of Disability, Ageing and Carers, more than 40 per cent of people over 60 need some assistance managing health conditions or everyday tasks. There are already more than two and a half million carers in Australia, and our ageing population will see many more Australians step into the role in the coming decades.
Sandra moved to Sydney when she first returned to Australia and flew to Melbourne one weekend a month, helping out with practicalities, such as banking, bills, hospital appointments and odd jobs. After a couple of years, her father was frail and in and out of hospital.
It soon became clear she would have to move to Melbourne to help her mother cope. She moved down with a friend from England and they built a house for the four of them on her parent’s suburban block.
Soon after, her mother Edith was diagnosed with Alzheimer’s. “It was awful because mum had always been a fighter,” Sandra insists. “She was female croquet champion of Australia for a while. When we went to the doctor he turned to me as though she wasn’t there and said, ‘Your mother has dementia’.”
Sandra became a full-time carer for her parents, the three of them living off her small carer’s allowance and their old-age pensions.
“Dad was used to being self-sufficient and was really keen to help out but he just wasn’t able,” she says, telling how she hired a guy to cut the lawn and pretended it was just to help out his business to soften the blow to her father. He had mown the lawn routinely on Friday nights for 40-odd years.
“[The caring] wasn’t so bad at first and I naïvely thought, ‘It will stay like this, it won’t get any worse.’ But believe me, it does,” says Sandra of the decade that followed.
“You start to feel like you are just a shadow of the ailment. You completely forget about yourself.”
On top of looking after her father’s medical needs, which included numerous hospital stays for operations as his cancer spread, Sandra soon had to take control of her mother’s daily routine, helping her with everything from showering to eating.
“I’d have to argue with mum about whether she’d cleaned her teeth. She’d look for her shoes, even if they were already on her feet.”
Managing to maintain her sense of humour has obviously helped. Sandra laughs that her mum used to finish her dessert quickly and then look at everyone else’s, complaining she wasn’t given any, or drink half her coffee in a café and then tell the waiter she’d only been given half a cup.
But of course, there were much darker times. “Mum got to the point where she couldn’t even find the toilet, and in the middle of the night there’d be mess everywhere and I’d have to wash her.
“Quite often, I’d cry under the shower so no-one would see me, just with feelings of utter exhaustion or helplessness or sleep deprivation.”
Sandra says that her light at the end of the tunnel was Carers Victoria. “I was quite a few years into my caring role when a nurse at Peter Mac [hospital] said to me, ‘What sort of help are you getting?’ And I said, ‘What do you mean?’ She said, ‘Call this number!’”
Commonly, carers don’t seek help, underestimating the enormity of their task and believing they should be able to cope, yet the Australian Unity Wellness Index states that primary carers have the lowest collective wellbeing of any group in Australia. However, the extremity of this situation may soon ease as the media focuses its attention on the plight of carers and the public increases pressure on the Government to provide greater financial support.
“It is a positive sign that carers have had increased media coverage in the last 12 months,” says Maria Bohan, CEO of Carers Victoria. “It shows that carers are now recognised as a discreet group in our community, with specific issues and needs. The media is also a valuable means of reaching hidden carers – people who may not identify as a carer and are therefore unaware of the services and supports available to them.”
If you know where to look, there are an encouraging number of services available to carers (see details, left). A report by Palliative Care Australia states that, despite the hardships, 60 per cent of carers acknowledge positive aspects to caring, such as feeling closer to the care recipient.
Sandra says she now feels a sense of pride and achievement following her decade of care. Carers Victoria offered Sandra emotional support through a case manager and seminars on an array of practical topics. She began taking her mother to a respite centre one day a week and when her father died in 2006, encouraged by the centre and friends, she moved her mum to the centre.
Edith is now in a high-care facility and Sandra is renting a house five minutes away and visits her most days. “As long as she’s happy – I can’t change who she is and I can’t let it distress me, otherwise I wouldn’t be able to go and see her,” says Sandra.
“The financial rewards [of caring] are zilch but it’s the little things that are rewarding. I went to see mum one time and she turned around to me and said, ‘Do you know something? I’ve got a lovely daughter.’ Mum wouldn’t have to say another thing to me – that’s enough reward from here to eternity really.”
What does the future hold for such a professional carer? In an unfair role reversal, Sandra was diagnosed with breast cancer last year but after two successful operations, the prognosis is looking good. She is doing voluntary work for Carers Victoria – “helping others find pride in what they do” – and was recently asked to be on the board.
And of course, she has a trip planned. Ten days after her last appointment with her doctor, in May this year, she headed off on a trip to Mexico, Cuba, the Caribbean, the US and Fiji. “It won’t be my last,” she says excitedly.
Advice for carers
- Try to continue with activities that you enjoy.
- Know you’re not alone – share your experiences with friends, family and support groups.
- Keep healthy – make sure you find time to exercise, have healthy, regular meals, get enough sleep and look after your back if lifting often.
- Take breaks with the help of family, friends and respite services.
- Make time for yourself.
- Practise relaxation.
[Courtesy www.carersaustralia.com.au]
What help is available?
The many services for carers include carer support groups, community health centres, food services, home help, home maintenance and modification, home nursing, palliative care, respite and transport services.
To find out about any of these services, call Carers Australia on 1800 242 636.
You can also get information about services that may help your situation by contacting:
- Commonwealth Carelink Centres 1800 052 222
- Carer Respite Centres 1800 059 059
- Translating and Interpreting Service 13 14 50
- Lifeline 13 11 14
- Veterans’ Affairs Network (VAN) 1300 55 1918
- Aged Care Information Line 1800 500 853
- Dementia Helpline 1800 639 331