The Invisible Army
Sydney Morning Herald
Monday May 27, 1996
They make up perhaps the biggest, undoubtedly the most dedicated - and certainly the cheapest - health care body in Australia. They are the people who care for a family member suffering from sickness, disability or simply old age. ALI GRIPPER reports on this stay-at-home army and its growing problems.
VICKI Hazelgrove is yearning for simple pleasures: a weekend off, a walk through The Rocks, dancing on a Saturday night, or a holiday away. At 73, any semblance of a retirement disappeared for her more than 18 years ago when her father and husband died in the same year, leaving her to look after her mother, Lena Little, who dwindled quickly into a frail patient needing around-the-clock care.
She does it out of love and pride. But sometimes, she feels like a dog running after a car. On, on, on, to the next task, the next hour, it's a matter of keeping a steady, even pace. Her days are long and tedious and, even on one of her rare breaks, she can never really relax. The impact on her life is enormous.
Lena, who turns 101 this September, and who has survived her two husbands, her doctor, her specialist and her nine younger siblings, lies curled uneasily in a heavily blanketed bed in her daughter's house in Mona Vale. From this bedroom, where she will spend the rest of her life, there is a glimpse of the sea but she faces the floral wallpaper, locked inside a body which won't move for her any more.
Lena's blood creeps slowly around her veins and her eyes can hardly stare back. The corners of her mouth are turned down. She's lost the will to talk, but she murmurs to her daughter when she wants her porridge for breakfast or a shandy after lunch.
For the most part of the last 18 years, Haselgrove has comforted her, fed her, turned her over every two hours to stop her getting bedsores, bathed her, talked to her, stroked her hair off her forehead, and is slowly watching her grow weaker and weaker. She has subsumed herself for a parent she loves. Virtually on her own.
VICKI Hazelgrove's is not an uncommon story. In Australia, about 1.5 million people are taking care of a sick spouse, a disabled child or an aged parent, according to the Carers Association of NSW. Joan Hughes, the association's executive director, says there are more than 620,000 carers in NSW and of those, 30 per cent are looking after an aged parent.
For the thousands of people who can't bear to abandon their parents to the uncertain care of a nursing home, who have chosen the tightrope life of looking after them at home instead, the road is often steep and rocky, with little support from the Government.
Stay home to look after an aged parent and you receive either a pension or a meanstested carer's pension similar to the aged pension ($256.70 a fortnight per married couple), plus a $57.10 a fortnight domiciliary nursing care benefit. Your parent will also receive a pension. But place the parent in a nursing home and the Government will pay about $700 a week for the care provided, says Hughes.
But nursing homes can be a difficult choice, too. A recent Herald investigation revealed many NSW nursing homes are badly failing their elderly residents. Some residents of aged homes face chronic problems from physical abuse to being restrained with drugs, poor nutrition, risk of infection and fire hazards, Federal investigators found.
The invisible army of carers, who choose against the lottery of a nursing home, saves the Government more than $8 billion a year, Hughes estimates. "When you look at the insurance compensation paid out recently to the actor John Blake, who needed 24-hour care for life, it was an enormous sum, millions of dollars, I recall. The Government could never afford to pay for the care given to our elderly and bedridden."
There is no general recognition, she says, that caring is anything more than a private, family responsibility in our society.
These are the people who have caring thrust upon them. They don't put on their hats and coats and get on a train every day, but they are in the workforce every day. And the impact on their lives is enormous. Just ask Vicki Hazelgrove.
FOR the past year, Lena has been bedridden and has had a urinary catheter, making her relatively easy to look after. She spends a lot of the day sleeping. But for many years before that Hazelgrove spent her days alone with a woman in constant pain. There were a series of strokes, a bout of pneumonia, peritonitis after gallstones were removed, and a broken arm. At one stage, for several years, Lena was calling out to her every 10 minutes.
Hazelgrove became housebound, somehow muddling through, unable to even think of the day when she could satisfy any of her own interests. The many years of care and worry have flown into a soup of details she finds difficult to recall clearly. "I don't know how many times the ambulance has come to take her away, but she keeps coming back. Her little heart just keeps going."
The period of constant calling was the worst time for both of them, the years of walking the tightrope. Ten minutes would pass and Lena would cry out. Another ten minutes, and she'd need to be taken to the toilet or have the bed changed. Hazelgrove would make tea, pad to her mother's side, watch over her for a while, and then wait for the next call. The days would stretch ahead like the Sahara. They were both so tired.
"Sometimes, I'd get so mad, I'd be talking to myself. You're so tired, you don't know what you're thinking, but then I'd go in and see her and I'd be sorry I was cross. Once they discovered that she was having terrible trouble with her bladder and gave her a catheter, the pain was controlled," she says.
At night, Hazelgrove lies down in her room with the television on for company and sleeps fitfully, rousing herself every few hours to turn her mother over on to her other side.
She lives off a war pension, and also receives the Government's nursing care benefit of $57 a fortnight. For the last few years, she has also paid a Home Care respite worker $8 an hour to give her 10 hours' free every week, six hours on a Friday afternoon, and another four on Saturday. But apart from those two afternoons off, and her daily 6.30 am swim at Mona Vale beach, she is virtually housebound.
Her three siblings have offered to help, but they are not as strong as her, she says. She wants to do it, she says. But when it comes to her own care, she doesn't expect her two children to look after her the way she looks after Lena. "I'd never put that on a person. It's a full-time job. I'll go to a nursing home if I have to," she says.
Hughes says the greatest problem the Carers Association faces is making people realise they are professional carers who have the right to services and community help. "So many people looking after an aged or sick relative think of themselves as 'Mum or a Dad, or somebody's son or a daughter', without realising they have the right to be compensated."
A recent study by the NSW association of 6,000 carers showed more than 60 per cent of them felt they suffered from social and emotional isolation and more than 70 per cent of them regarded themselves as living in poverty.
"There are many people on pensions who give 24-hour-care to their relatives. For those who are brain-injured or have dementia, the burden is even heavier. The big problem is that for many, many people in Australia, relinquishing care to others can be a very hard thing to do," says Hughes.
THE DAY is cool in Mona Vale. The windows are closed. Hazelgrove sits in the living room looking at an album of photographs of her children and grandchildren, and her mother, Lena.
There she is just a few years ago, on her 96th birthday, perched up in her reclining armchair, with a red Santa Claus hat on, calling a friend in Tasmania, her face pulled into a wonderful grin.
Hazelgrove strokes some of the pictures of her mother, as if she has already gone, and this is the only way she can reach her. "All she can do is manage a smile; she's hardly got the strength to talk, but she understands everything that's going on. I don't know if that's good or bad."
She doesn't see her mother as a burden. Would she ever send Lena to a nursing home? It's a terrible thought. "My family is always at me, but I can't see why it would be better for her to go to a home. It would worry me to death.
"She's so helpless, so while I can, I'll keep taking care of her. She can't hear very well, but she can understand what's going on."
Lena smiles rarely, but always does so for Lincoln, her eight-year-old great grandson, especially when he sits on her bed and shows her his toys. "She's the only one who lasts long enough, she's always very popular with him," says Hazelgrove.
"There's nothing wrong with her mind. I think she'd be miserable in a home. She's been a wonderful mother to us and I don't want strangers looking after her. And besides, she loves all that rubbishy food and soft drink. She's loved it all her life. If she was in a nursing home, they wouldn't give her any diet lemonade or diet Coke, would they?
"Sometimes she'll say to me: 'Don't leave me' and who's to know? Maybe she's frightened she's going to die in her next sleep and she wants me there."
CONSTANT CARING
AS the population ages, more and more people will be needing elderly care: in 1993, 15.4 per cent of Australians were over 60, and by 2041, it is estimated 22 per cent of Australians will be aged 65 and over.
Joan Hughes, the executive director of the Carers Association of NSW, says: "The Government has admitted there will be a problem by 2041, but we know there is a problem right now. If you ring up Home Care, or any of the respite services, you'll realise there's a long waiting list.
"The emotional toll on carers is hard to measure. They might get an hour's respite care, but they'll probably be thinking, 'I hope everything's all right' and perhaps worrying about the respite care person. It's a constant responsibility."
Advances in medical technology and early discharging from hospitals have also meant there are thousands of people who require complex care at home with very little support, says Hughes.
The people looking after their parents today are part of a "very selfless generation, who grew up with the ethos of giving constantly", she says.
But the next generation of carers will have had more choices and freedom than their parents and will want to continue some kind of life outside the home. They will need more support than today's carers.
Elderly care is also a coming issue for many businesses as well. Already some corporations, including the ANZ bank, Wollongong City Council and IBM, make allowance for employees to have time to look after ill or elderly relatives of employees, and for flexible working hours.
HELPLINES
* Carers Line, run by the Carers Association of NSW, offers detailed help of services in your local area: 1800 817 023.
* Home Care: central office (02) 689 2666.
* Interchange: (respite services) central office: (02) 369 3245; Meals on Wheels: 281 5733.
* For community transport services and aged carers in your community, ring your local council or the Carers Line.
© 1996 Sydney Morning Herald
