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Wendy and her mother Glory live together in the working-class Sydney suburb of Smithfield. Wendy, a 59-year-old mother of three, is a pale, petite redhead, made tinier by a recent gastrointestinal illness. Her pants are almost as loose as those her 82-year-old, 45-kilogram mother wears; I feel ridiculously large sitting alongside them. I feel too large, even, for this room, filled with delicate porcelain ornaments, piles of photo albums and other keepsakes. The house is cluttered with history, which suits Glory, who sustained frontal lobe damage 15 years ago. The distant past is more real to her than today. Glory sips the tea Wendy has given her, while Wendy hovers in the space between us and talks about her late father. ‘Dad didn’t trust us, so he had a padlock on his bedroom door … See he bought a lawnmower and kept it in there. We only had a tiny, wiry lawn. But he never mowed the grass. It’d be up to your knees. We used to say, “Oh, if we could only get in to that lawnmower.” When he did open his door, I’d try and race in and grab his sheets. Remember, Mum? I mean, the sheets were just … you know, he wet himself and all the things drinkers do.’

Glory nods. ‘He was a wonderful man when sober.’

Wendy’s dad, a violent alcoholic, was the first person for whom she had a burden of care, although she would never describe it that way. ‘I was very close to Dad. Whatever he’d done the night before, I’d get up, have a boiled egg ready, pack his bag with food and give him a hug. I’d come home from school, peel the potatoes and soak the beans. Mum was at work and Dad at the pub.’

Then there was her grandfather who ‘had a set against women. He didn’t like Mum, didn’t like me. Wouldn’t let us in the house. He lived till he was 93. When he got sick in his eighties, me and Mum’d go down there to look after him. We’d take stews and soups. The old bugger would eat it, but reluctantly.’

‘He had a beautiful old fig tree,’ remembers Glory.

‘Yeah, but we weren’t allowed to pick the figs.’

‘I used to pick them when he’d go out,’ Glory giggles. ‘Lovely, they were.’

‘We didn’t ever think of not looking after him,’ says Wendy. ‘He never had enough love, I always thought.’

Care, the nursing historian Marie-Françoise Collière wrote, ‘is at the very root of women’s history, as it is around care that the main part of women’s destiny is woven’. This is true for Wendy, who has cared her entire life and swears she will do so until the day she dies. ‘When Mum’s gone,’ she tells me, ‘I’ll find someone else who needs me. I wouldn’t know what else to do with myself.’ She tells me repeatedly that speaking to her is probably a waste of my time: ‘My life’s nothing to talk about.’ It’s a sentiment I’ll hear again and again from family carers.

Collière argues that, as medicine became professionalised, ‘anything related to care became taken for granted, considered unworthy, requiring “lower skills” and scanty knowledge, limited to routine procedures and “know-how”. Non-professional, unpaid carework became ‘invisible work done by invisible women.’ There are male carers, of course, but they are in the minority. More than 70 per cent of primary carers in Australia are women, and American research shows that daughters are three times more likely to become primary carers than sons; this blows out to four times more likely when the parent is severely impaired. The gendered nature of care is, as the Sydney Morning Herald’s Ross Gittins has argued, ‘a feminist issue with similarities to the need for child care – although it gets far less attention than the problems faced by younger women.’

The disparity in male/female care reflects the traditional division of labour in families. In our culture, as well as in many others, women and girls are still expected to take on all or most of the domestic responsibility. The gender pay gap is also a factor: women still earn only 83 per cent of the male wage, so leaving work or reducing work hours in order to take on family responsibilities is considered less of an economic sacrifice. As historian Emily Abel points out, care work is undervalued not only because it has traditionally been seen as ‘women’s work’, but also because the people who need care – the sick, the disabled, the elderly – are also undervalued.

Wendy is an only child, so for her there was never a question about who would take on the role of caring for her mum. Her husband, Tony, was raised by a single mother who cared for her disabled siblings, so he is sympathetic to Wendy’s role. All the same, Wendy tries to minimise the impact of Glory on Tony. She waits until he leaves for work each day before getting her mother up and into the shower. ‘Well, it’s a strain on the marriage but our marriage is strong,’ she says when I ask her about Tony. ‘It’s not what he’d choose … I mean, even Mum wouldn’t choose to be living here if she didn’t have to. Would you, Mum?’

‘Oh, no,’ says Glory. ‘But we get on all right.’

Two weeks earlier, I had talked to Wendy alone and she told me the extent of her mother’s psychiatric illness.

‘She had a complete breakdown and was diagnosed as bipolar. She couldn’t shower herself, couldn’t even make a cup of tea. She was delusional. She was in the aged-care psychiatric ward, and I used to go there every day to learn about depression, about coping with it and also to get Mum to know me again – with all the medication she was on, she didn’t know me. I used to stay at the psychiatric ward until ten o’clock at night, put her to bed. She tried living alone when she got out but she couldn’t cope. I’d go visit and she’d be curled up in the foetal position.’

Today, with Glory in the room, Wendy only describes her physical disabilities. ‘Emphysema is the main thing. Plus she’s lost most of her eyesight.’

‘But I’m all right,’ Glory says, ‘because I can still see my smokes. Is there a chair out the front, Wen? I might just…?’

‘You haven’t had a smoke yet today, have you?’

‘No, this is my first.’

‘Not that I ever say anything about her having a smoke,’ Wendy tells me, as her mother makes slow progress across the room. ‘It takes her breath away and sometimes she faints, and she’s got an irregular heartbeat. People say, “You let your mother smoke?” Well, I wouldn’t not let my mother do anything. She’s a free spirit and I want to keep her that way.’

Glory, now almost at the front door, pauses, takes a deep breath and bursts into song: ‘What’s the use of worrying?’ Wendy joins in for a chorus. After another rattling breath, Glory heads out to the front veranda, to enjoy her first smoke of the day.

‘Mum had a short stay in Fairfield Hospital two weeks ago and a social worker came to see me, to see if I needed home care. I said I didn’t need it. I can do it all. We cope fine. We haven’t got a big problem to cope with. But she said, “Yeah, you have. It’s a whole other person to do everything for.” But if you let yourself feel burdened by it, it’s the wrong reason you’re doing it.’

Wendy is genuine and sincere, but she is not representative of Australian carers, many of whom are at breaking point. They are desperate for the kind of assistance Wendy knocked back from Fairfield Hospital. They are physically exhausted from getting up every two hours throughout the night, lifting, carrying, bathing and dressing wounds. They are emotionally exhausted from the stress of considering the wellbeing of another person 24 hours a day, seven days a week, every day of the year, without relief. And their cause is, to some degree, undermined by the stories of women like Wendy: she so perfectly conforms to the stereotype that has kept carers off the political agenda – that carers are naturally altruistic, don’t need to be paid, compensated or assisted because they are doing what comes innately.

Caring is seen as a moral chore or obligation more than it is seen as work. It is a perception reflected in other ‘caring professions’: nurses are notoriously underpaid and their demands for higher wages are frequently hampered by the risk posed to patients by striking. This in turn adds to the general perception that nurses do their job for ‘love’ rather than money.

Of course, this motivation is generally true of family carers. They do what they do out of love or familial duty. They’re often reluctant to complain about their financial status precisely because they fear people will think they expect to be paid for taking care of a loved one. When they do decide to lobby for better services, they have little recourse when dealing with recalcitrant funding bodies. And, like nurses, it’s not as though they can simply walk off the job. The potential for fatal consequences is simply too great.

Given the expectation of altruism and the reluctance of carers to agitate, it is no surprise that the funding of services for family carers is a low priority for most governments. Yet carers are some of the most economically disadvantaged people; 32 per cent of family carers, and 44 per cent of primary carers, live in low-income households as compared to 17 per cent of non-carers. Seventy-five per cent of the 2.6 million family carers in Australia are of working age (18 to 64), but one-third have had to reduce paid working hours, or give up paid work altogether.

Although half of all carers receive a Centrelink carer pension, and a further 400,000 get a small fortnightly Centrelink allowance, around a quarter report difficulty in meeting daily living expenses. Beyond the day-to-day financial struggle is the prospect of an old age without savings or superannuation. Research by, among others, AMP and the National Centre for Social and Economic Modelling, and US economist Ann Crittenden, shows that women who give up work to be full-time carers, even for a few years, are substantially worse off economically over their lifetimes. This is true whether the woman is caring for a child or an adult, although most research and discussion of the matter is focused on ‘working mothers’.

Twenty minutes away from Wendy, in Sydney’s leafy, solidly middle-class north west, lives Regina. She has agreed to meet with me but voiced concerns that she is not a ‘real’ carer. Despite being the full-time caregiver for her 91-year-old mother, Regina has never applied for respite care or made contact with any of the carers’ support or advocacy groups. She worries that receiving the fortnightly carer’s allowance disqualifies her from being included in my definition of ‘unpaid family carers’.

Regina is a slim, fit blonde who looks a decade younger than 64. Her voice is soft and youthful, with just the smallest hint of her Lithuanian childhood coming through in her long vowels. She worries that I came out here on a Friday when the traffic is bad. She apologises when a beaded chain hanging from the hallway light fitting hits me in the head.

‘But it’s supposed to bring good luck,’ she says. We sit in the living room, which is spacious and clean: polished floorboards, pale couches and the curtains wide open to let in the warm, early spring day. Regina’s mother, who has multiple myeloma (plasma cell cancer), osteoporosis, macular degeneration and almost total hearing loss, is upstairs having her afternoon nap.

‘Mum lived independently until three years ago,’ Regina tells me. ‘She was starting to go downhill – she’d had a fall and it was hard to leave her alone. Then I got retrenched… If I didn’t have Mum, I would probably have looked for something full-time, even part-time. I would’ve loved to have gone back to work, but as it happened the timing was good.’

Like Wendy, Regina minimises what she does. ‘My day is just nothing, quite boring really. I help Mum after she’s had a shower. I cook and wash… My sister-in-law is a real carer. Her mum’s got Parkinson’s – and she was looking after her dad, too. He was being fed through a tube into his stomach and she had to clean the tube. With her mum she does everything – her bowels and her bladder. To me, that is a real carer.’

She is quiet for a moment, looking back towards the stairs. ‘I guess the only thing is that I am tied down. I can go out for a few hours but it’s always in the back of my mind that I have to rush back. There’s no way I could leave her alone any longer. She gets very nervous once it gets dark and doesn’t like being alone.’

What would happen if Regina couldn’t care for her mother? ‘I don’t know. It never entered my mind that I’d have to put her into a nursing home. If anything happened to me, then yeah, I guess … Mum says to me, “Once I can’t go to the toilet [this is the thing that to her is the worst], once I can’t go to the toilet myself…” It makes me feel bad – she’s always saying “thank you” and “what will I do without you?” If I get a cold, she gets really worried. I think she thinks if something happens to me, what will happen to her?’

It’s a question that also haunts Dawn, who, at 63, is the primary carer for her 32-year-old daughter Jacqueline, who has cerebral palsy. Jacqueline works in a sheltered workshop four days a week, and attends an impressive number of social functions held by various charitable and local council groups. She is also cared for by a respite worker for a couple of weeks every few months.

‘Not that I have to do a great deal with her,’ Dawn tells me, ‘but it’s nice to not have to think about if she’s all right. It’s like having a little child. You can’t just drop everything and take off. It took me a long time to even apply for respite. A lot of us think like that – it’s just my responsibility. She’s my kid.’

Emily Abel, writing about women’s care work in the nineteenth century, comments on the assumption that ‘female workers at all levels of the occupational hierarchy [would] quit their jobs when family members fell ill’. She quotes one young nineteenth-century woman as saying ‘the maiden woman in a country family belongs to everybody in case of illness’. Abel points out that, while the obligation to perform care work has often reduced women’s independence in terms of physical and economic freedom, it could also be – to use a very modern term – empowering because of the skills acquired, the inner strength drawn on and the resourcefulness developed.

Dawn is a perfect illustration of this phenomenon. She shrugs and gazes out the window when I ask whether she ever had any career ambitions. Her body language and expression make it clear that the question is irrelevant. She has done what she had to do, changing in the process from ‘a timid little thing’ to a woman with so much knowledge and experience in navigating the system that others turn to her for help.

‘It’s hard to find things out. They’re not freely signposted,’ she says as she gathers leaflets and pamphlets from the refrigerator door, newsletters from the coffee table. ‘You only find out through word of mouth, because someone else has gone through it and tells everyone … I used to feel guilty for making a fuss, but not anymore. Like, they cancelled the bus [which took Jacqueline and others to work] and we went to the papers and I rang our local MP Wayne Merton. Which I would never, ever do before. Once, I would have just stood back and been quiet.’

Respite care, and the fact she has a husband who is ‘wonderful’ with Jacqueline, puts Dawn in a relatively good position for a primary carer. She does, however, have anxiety about the future. ‘I would like Jacqueline to be able to go to a good group home, and just be settled there, because we’re not getting any younger. There are not a lot of group homes around and even fewer suitable ones. Cumberland was going to build one. It sounded ideal: they’d each have their own room with a kettle and fridge and then a dining hall for their main meals, so they can have their friends around. But nothing happened with that. It would be wonderful to have that taken off your mind. You’re thinking of it all the time, subconsciously.’

Wendy, Regina and Dawn are of the generation most affected by what American historian and journalist Ruth Rosen calls the ‘care crisis’. Rosen compares the obligation for women to perform invisible, unassisted care work to the ‘feminine mystique’, saying it is the new ‘problem that has no name. It is the elephant in the room – at home, at work and in national politics – gigantic but ignored. People suffer their private crises alone, without realising that the care crisis is a problem of national significance.’

Yet increasingly, the care crisis is moving on to the national agenda, expanding from a ‘woman’s issue’ into a societal one. Eighteenth-century philosopher Adam Smith’s invisible hand theory posits that an economy functions best when individuals are allowed to act out of self-interest, because the supply and demand of labour and resources ‘invisibly’ work to regulate the market. Playing on Smith’s theory, economist Nancy Folbre, in her book The Invisible Heart, argues that although caring has a financial value – so the labour it involves forms part of the commercial economy – it is also economically unquantifiable.

The problem, as Folbre sees it, is that Smith’s ‘self-regulating market’ excluded roughly 50 per cent of the working-age population. With all those women available to care for children, the ill, the elderly and the disabled, governments had little need to factor this non-productive (in economic terms) work into budgets and planning.

Happily, the time when women were mostly excluded from the paid workforce is over. This means, however, that society must find a new way to address the needs of those requiring care. Women’s increased workforce participation is not the only cause of the care gap, of course. Smaller family sizes (meaning fewer family members able to help out), the increased geographic mobility of the workforce, the deinstitutionalisation of the disabled and mentally ill, an ageing population and increased life expectancy all contribute to the escalating problem. This is, as Ross Gittins has pointed out, an economic problem, not just a social welfare one. Several of the factors which contribute to a lack of carers – an ageing population, and the low birth rate, particularly – will also contribute to a lack of workers.

A nation with a small labour force can’t afford to have large numbers of people opting out to care for relatives. But people with relatives needing full-time care often have no choice but to become full-time carers. Obviously care can be – and frequently is – bought and sold in the marketplace in the form of day-care centres, nannies for children, nursing homes and residential care facilities for the elderly and disabled. But even the most basic care – bathing and feeding a person, for example – is expensive, and those most in need of such care are frequently those least able to pay. And most of us naturally want much more than basic care for ourselves and our loved ones. We want high quality, nurturing, humane care. We want the kind of care that it was once said only mothers, grandmothers or daughters could provide.

Thirty-six-year-old Amanda lives with her older sister, Tracey, in the family home in Sydney’s north-western suburbs. Amanda took over the mortgage after her mother died in 2005. She also took over as Tracey’s primary carer, although she has helped care for Tracey, who is mentally and physically disabled by neurofibromatosis, her whole life. Tracey works at a sheltered workshop four days a week, but she depends on Amanda for almost everything.

‘I have to make sure she’s clean,’ Amanda explains. ‘She’s not very good hygienically. I have to take her to the dentist every three months because she gets gingivitis – she can’t clean her teeth properly. I try and do it for her but I can’t all the time. Because of her neurofibromatosis, she has a lot of excess skin and she gets a lot of fungus growth. She’s on Warfarin and she scratches herself; she has constant skin infections. She can’t really think for herself. “What will I wear, do I do this, do I do that?”’

Tracey tried living independently for a while after her mother’s death. ‘But I was still going over there all the time,’ says Amanda. ‘Her unit was getting broken into all the time. It was very unsafe. You’d get a phone call every day and have to go over there. The way she was living wasn’t right. She was getting sicker. I had to bring her home.

At least we’re at the same address. I’m not getting phone calls at ten o’clock at night because there was a blackout and the clock radio has the wrong time, can I come and fix it?’

Amanda smiles often, but it is a tired, spiritless smile. Every few minutes, tears leak from her eyes and she swabs at them with a tissue and continues talking. At first sight she is a strong, healthy woman, but up close and over time I see she is brittle, constantly at risk of shattering.

Like many family carers, Amanda was reluctant to apply for government assistance. ‘Mum never received any. She was a widow at 35 with three kids under seven, one of them sick in hospital all the time. But she just thought, “Tracey’s my daughter”. And I felt like that, too. She’s my sister, why should I get financial support? In the end, I applied three times and they kept knocking me back. Our MP, Julie Owens, in Parramatta, helped me. She lodged my form and I finally started getting carer’s allowance.’

But the carer’s allowance, at around $100 a fortnight, ‘doesn’t even begin to cover expenses’. Amanda has been living off her savings since late 2006, when she had a breakdown and had to quit her job as a transport supervisor.

‘I’ve got a job interview on Wednesday. It’s full-time shift work, security work. It’ll be full-on. But I’ve had a year off and it’s time to go back. I have a mortgage on this house and it’s coming out of my savings. This is the family home. I don’t want to sell it and Trace doesn’t want to move. She’d get sick if I uprooted her.’

The night before, I had read that the hours spent on home care for the elderly and the disabled in Australia are equivalent to one million full-time jobs. I also remember an Access Economics report which estimated that family carers would collectively earn $30 billion a year if paid the going rate in the service market. I look around the modest, neatly kept suburban house. I look across at Amanda, dark circles beneath her eyes which are constantly threatening to spill over with tears. I feel nauseated. Amanda doesn’t want more money for herself. What she would really like is some respite care for Tracey.

‘I’d never put her in a home. Never. But respite would be lovely. Just to know she is still cared for. I’ve had her on the list for a year now and they keep saying there are no positions. I never get return phone calls. I never know who to speak to and I get so frustrated not getting anywhere. So I just give up, until the next breakdown, and then I start again – and get frustrated all over again. I just don’t know who to contact and they say you need to kick up a stink to get heard. Obviously, there are people out there who need it more and so I just put up with it. But respite would be nice, for weekends or something. It would be good for her to have a break, as well as me.’

I have known Amanda and her family for years, but only slightly. We are friendly but not really friends. Yet, when I sit across the table from Amanda and start recording, she begins to talk as though we are sisters who haven’t spoken for years. She is heartbreakingly candid. Amanda talks and talks without prompting, moving me to ask whether she ever attended a support group for carers.

‘I think all those people are worse off; they don’t need to hear my stories,’ she says. ‘I just cope. All the other carers I know are parents or aunties, and they’re elderly. I don’t know any sisters or brothers, or even kids. I don’t want to go to these meetings; they’re all old and I feel I don’t have anything in common. I feel I’m lucky because Tracey is not that bad.’

Tears have been steadily running down Amanda’s face for the last 20 minutes, but her crying is silent. She dabs at her face with a tissue but waves away my offer to have a break. ‘I’m sorry, this isn’t very helpful,’ she says. ‘I shouldn’t be feeling sorry for myself.’

I tell Amanda about the Deakin University study showing that carers suffer ‘extraordinary’ rates of depression, with 56 per cent classified as ‘moderately depressed’ compared with six per cent of the general population. Forty per cent are considered to have ‘severe’ to ‘extremely severe’ depression. The wellbeing of carers was found to be lower than for any other group, including the unemployed and the very poor.

‘It’s not the caring, though,’ she says. ‘It’s not having anything else. I’m 36 and I haven’t had a serious boyfriend for 10 years. I wish I could have some kind of social life, but there’s just no time, and someone’s got to accept Tracey as well – and that scares a lot of people. Besides, I’m just physically and mentally exhausted constantly and to even go out would be a strain. My sister-in-law calls us Patty and Selma from The Simpsons. It’s true, except we don’t smoke and hopefully we don’t look that bad. We don’t have a pet like them, but Trace’s got a colostomy bag and ileal conduit and that’s our pet. Sometimes I think, how would my life be different if I did have a more normal sister?

Would I be married, would I have kids, what would I be doing?’ I ask Amanda about her brother who, living in Queensland with his wife and two kids, seems to have the very life she craves. ‘I’ve always been the one that’s more… I’ve always helped Mum, being the boy he would just… I don’t know. Anyway, I would hate it if she wasn’t with me. She drives me crazy but I would miss her. I guess she’s made me the person I am today.’

Amanda is only four years older than me, but I feel like a child in her presence. I am reminded of the description anthropologist Susan Rasmussen gives of the evolving social roles of the Tuareg women of northern Niger. Tuareg women do not ‘age’ in a linear fashion, but rather according to their life experience. Rasmussen observes that, although she is, in her native United States, middle-aged, amongst the Tuareg she is a young girl because she hasn’t passed the rites of passage of marriage and childbearing. Age is equated with emotional and practical maturity rather than chronology. This is how I feel around Amanda – though of similar age, her life experience has made an adult of her in a way that mine hasn’t.

In 2008, six months after Bill Shorten was appointed Parliamentary Secretary for Disabilities, he spoke of being ‘shocked to learn of and witness firsthand the entrenched second-class status afforded to Australians with a mental illness or disability’. Later, he would speak of the ‘more than two million Australians’ who are ‘hidden in plain sight … citizens in name, but exiles in their own country’. Throughout his time in the role, Shorten was seen as genuinely passionate about his portfolio and a true champion of Australians whose lives are affected by disability. Disability and carers groups have long been lobbying the Federal Government to institute a National Disability Insurance Scheme (NDIS), a Medicare-style system that would provide lifetime care and support for anyone with a disability. Such a scheme would eliminate a great deal of the physical, emotional and financial hardships experienced by people with disabilities and their families. There was great hope that with Shorten’s support, not only would the NDIS finally be instituted, but the prime minister would appoint a minister (rather than merely a parliamentary secretary) to oversee it.

After the 2010 election, Shorten’s contribution to the area of disability services was rewarded with a promotion to Assistant Treasurer. There would not be a minister for disabilities. Shorten spoke of his regret at having to relinquish his disabilities role, but it was nothing compared to that of disability and carers’ advocates who had put their faith in him. Politicians come and go, but carers keep on doing what they must.

‘There isn’t a choice to care,’ Amanda told me. It wasn’t a complaint. Amanda was talking about her sister. She cares ‘about her, not just for her’. That’s the point. As a contributor to an online carers’ discussion board writes: ‘Caring for our family members with disability or significant illness is never a burden – if we get the support we need. But most Australian carers waste so much precious time fighting for the right kind of help. It’s not the disability or illness, but the constant fight that steals our joy away from us.’