I am concentrating. I am puffing and growing red-faced with the effort of pulling my ninety-year-old mother out of my little car. Mum has grown heavier with age, and her muscles are now weak. She is trying to heave herself up out of the seat and into a standing position. Both my feet are planted firmly either side of the car door, her hands on my wrists, mine on hers. She rises, then collapses back. We start again. Foolishly, I have parked on a slight slope and her door has to open slightly up a hill. It is hard enough getting my mother out of the car on flat ground. We are weakening our effort by laughing. Finally, I winch her out.
We are standing in the middle of a great forest, called the Whipstick, in Central Victoria. It is a huge stretch of ironbark forest on flat terrain, thick scrubby bush interspersed with great tracts of ominous, dark-trunked gums, threaded with paths of ochre-coloured clay. There is no easy beauty here, except in the springtime, when suddenly the undergrowth blooms with wildflowers. I am travelling up each week from Melbourne to see my mother, after a hectic year of work. I bring her here and every time the predominant bloom changes, now yellow, or cream, or pink flowers on bushes or ground covers, spreading puffballs of colour against the dark bark of the trees. I collect Mum from the nursing home, slip in a CD playing an opera and turn it up very loud, because she is now profoundly deaf. Sometimes we pause at the lights with some lout next to us with a heavy metal beat pulsing out of his car. I turn up the volume and outdo him, and zoom off, Puccini soaring, sunlight flashing through the trees. My mother taps happily on her knees in time to the music, occasionally raising her arm in an airy, conductor’s wave.
This week we have spotted a new flower, a little in the distance. The rain has made the clay bright orange and spongy, the dams and small creeks are swollen, and there are large, milky brown puddles to navigate. Mum’s walking trolley sinks into the ground, leaving wheel marks. I am watching her every step as closely as one watches a toddler taking their first steps. I am anxious. The risk is that, having got her out of the car, I won’t get her back into it. Or she falls and I can’t get her up again, out here in the bush, miles from anywhere. Finally we get there, to the Holy Grail of wildflowers. It is a delicate, pale purple orchid. We are exultant.
Back in the car I hand her a chocolate brownie. I have discovered my mother loves sweet things after a lifetime of apparent indifference to fine food. I am afraid I throw health piety to the winds and bring her chocolates, KitKats, Tim Tams … She polishes them off with relish – crumbs flying every which way. It has taken me a while to work out what kind of outing gives her pleasure. She is as puncturing of other people’s good intentions as ever. Delicious lunches come and go without comment. With my daughter, I took her to the local art gallery to see a magnificent exhibition of Greek statues and artefacts from the British Museum. She looked hard at one of the two-thousand-year-old marble statues, with people cooing enchantment left and right. Unimpressed, she frowned and said, ‘It is very … small.’
When we return to the nursing home I wonder if she will remember these trips. But I dismiss it. Slowly I have learned that whether my mother remembers something is irrelevant. We all assume something like an inner camera recording experience and laying down memories is what makes an experience worthwhile. That is not really true. Long before the capacity for language or explicit memory develops, a very young child feels pleasure at a mother’s embrace and the warmth and bright pricking light of a sunbeam, long before they can put a name to the sensation or can remember what happens. The feeling of what happens – benign, pleasurable, vibrant, or angry, cold, hard – can be enough. For an older adult losing their memory, the ‘feeling of what happens’ is again enough, even as they may not remember actual events. Our relation to experience can even be corrupted by the idea we must remember what happens or it is not worthwhile. And yet the consequences of good experiences are there. Without exactly being conscious of it at the time, I realise later my visits have been not only busy with practical aspects of care, but purposive in another way. I want my mother to inhabit that part of herself where she experiences being fully alive to the world. The best way, I have discovered through trial and error, is to give her music and take her out into nature. Out here in the vast, unending landscape of the Whipstick forest, there are no complaints.
If I were on an imaginary psychoanalyst’s couch, doing a word association, the word which would fly out of my mouth at the prompt of the word purple would be fidelity.
The next word would be grief. I first really knew when she held up a standard kitchen grater that she had been using for eighty years and said, ‘What is this?’ I paused from packing away the shopping, lifting my head out of the vegetable drawer of the fridge. I was staring at it, staring at her. The world wheeled sideways and for the briefest of moments the shock made time slow. The room went dark and then came back into focus. She was still waiting for my answer. Then I mustered a frozen smile and deliberately changed my voice so it did not register the inward shock, the ‘Oh no,’ and instead spoke in the rueful tone of humorous indulgence we might use for a loved one’s everyday foibles. ‘Mum,’ I said, as if amused, ‘that is a grater.’ I made light of it. But later sitting in the car I covered my face with my hands and wept, giving full recognition to the meaning of not just that moment, but all the other moments of her growing thinner and thinner before I took over meal production, of sand to repel ants spread all over the kitchen benches, of multiple phone calls and visits to sort out leaking roofs and simple maintenance, of minor car accidents and getting lost trying to find the street of her book club that she had been going to for many years. My highly intelligent mother was losing her memory.
Old age is a whole other countryside. Like small children at the beginning of the life cycle, people around an old person need to mobilise for their care and, as I have done many times in my life, I swing my full attention to my mother. In old age, however, it is more a case of un-development – of growing backwards, as one capacity after another becomes compromised, attenuated or disappears. I found myself open-mouthed, astonished, taken by surprise yet again as, one by one, an ability – to pay bills, or drive safely, or clean or clothe herself – disappeared. Long before the grater incident, I tried to stop my mother from doing much driving, especially long trips. We lived hours away from her, so I either travelled up to the country town where she lived or she came down by train to see me. The train trips have ceased. The reason is that, one day, outside the huge Southern Cross station in Melbourne, rather than wait for me to park and accompany her, she suddenly leapt out of the car, and scampered across the peak hour traffic in Flinders Street against a red light, taxis and cars skidding to a halt, honking and drivers screaming at her. At first I either drove her back or put her on the train at a small country station halfway, and someone collected her at the other end. Then even that became dicey, and from then on she could only be driven. It was like suddenly realising that a small child had acquired a new skill, and was about to squirm off the change table or climb out of a cot. One is often trailing afterwards, only what you are following is an unravelling, a movement towards unbeing, not becoming.
Like the period of life where very young children are present, work can still be done but you never know when a crisis, a fall, a stroke, or just being unable to cope with some small task, will blast it off course. I cut back on work, stop doing journalism, delay a book, and disappoint my publisher. After much discussion, my mother bravely makes an anguished decision to sell her house so she can move closer to me, to a retirement village in Melbourne. For months I travel up and down preparing her house for sale, so many times I think my tyre marks are carved indelibly into the tarmac. We are full of hope though, as if we have defiantly swung our faces to a new future, that she will have a better life. Not long after she moves, any romance about this new life vanishes. The place offers far less help than they promise in the glossy brochures, and my mother needs far more help than any of us realised.
Keeping someone completely independent when their capacity for independent living is fast evaporating is a huge operation. Bit by bit, I set up an elaborate care network. Far-flung siblings help, we roster phone calls, visits … Sometimes, cleaning up her flat, I am what the Irish feminist Kathleen Lynch calls a ‘care foot soldier’, but other times I am a ‘care commander’, and feel like a field officer deploying troops as I either give or get help for every aspect of her life. The government help is skeletal. An assessment of ‘low care’ means only four hours of assistance per week. It is a meaningless category, assigned when someone can merely walk to a bathroom or to a dining room. All the cosy sounding mantras of ‘ageing at home’, a geriatrician quips scathingly to me, really means ‘ageing at your own expense’. I am more preoccupied than any time since I had young children, only now I am continually anxious, scarcely able to work, and keep compulsively making long lists of what I need to take responsibility for. They keep expanding. Banking. Stamps. Underwear. Socks. I first have to find and then pay the bills discovered in disconnected piles of paper. I make up rosters to pin on the fridge so she remembers activities each day, but worry over the indignity. Mum has got lost shopping, even in a group of residents, so I online shop and have it delivered, or bring it with me. Some fellow residents are inexpressibly kind, but others are cold and censorious, perhaps fearing a glimpse into their possible future. Another resident has put in a complaint, that Mum is dishevelled. She tells one sister pointedly that, as the village is for ‘independent living’, Mum should be elsewhere. We are all livid but redouble our anxious efforts to keep Mum clean. She simply doesn’t notice, so as tactfully as possible I have to look through her wardrobe, find dirty items to throw in the tub. My sisters do the same. Then outfits are laid out each day between me and the council carers so she can wear fresh clothing down to morning coffee. Cleaning, medical appointments, dentists, specialists, aged care assessments … It takes hours on the phone each week just to organise it all, or to deal with local council bureaucracy to arrange meals-on-wheels, carers and cleaners. With frightening speed, even all that is not enough.
After a mild stroke and a fall which lands Mum in hospital, she is told by a kind, gruff but straight-shooting geriatrician that he doesn’t think she can live independently. He asks whether she trusts me. My mother straight away answers an emphatic yes. Her trust makes it one of the worst days of my life. I feel that I have failed her. She expresses the wish to go back to her country town, where she still has strong social networks. After many weeks of searching, a whole family effort, we find her an excellent nursing home, the very best we can find.
I have been researching her medications in case they are contributing to her confusion. One has sent up a red flag. I enlist her new GP, an unusually enterprising and attentive man who does not settle for her condition being simply old age. At my request he examines afresh my mother’s medications that all the GPs, geriatricians and neurologists we have consulted have okayed. He changes one that he thinks is contributing to the problems. The change seems miraculous; she is suddenly able to finish sentences and remember enough to make new friends and to start reading again. In a structured environment, Mum surprises everyone and thrives, improving in every way. She continually expresses relief at no longer having to be responsible for the things in daily life she can’t manage, as the carers whisk away dirty clothing and return it freshly laundered. ‘Like Magic!’ she says as cups of tea and meals appear in front of her. Everyone here is in the same boat; there is loving kindness, solidarity and no judgement. She remains embedded in the family, and between all of us on almost every day someone is in contact, while old friends rally and she remains in a social network going back fifty years. Sometimes her fiercely independent spirit surfaces. When my husband and I take her out to lunch one day, she is concerned about being driven by someone she doesn’t know to a funeral of an acquaintance. Mum is worried about asking for help with her walker at the other end. My husband says that maybe she look at it another way; that people might feel pride in helping her, and that there should be a pride, not loss of dignity, in asking, that she has a right to be looked after. The right to dependence seems, in our independence-obsessed world, a radical but absolutely just idea. Perhaps ‘independent living’ is idealised more than it should be.
On that imaginary analyst’s couch, the other words which would fly out in connection with purple, would be suffragettes, because one of their symbols was the colour purple in garments they wore. But also care, because for me a feminism worth having has always included justice and equality for the vulnerable who need care and for their caregivers, but also because inequality in caregiving remains at the root of women’s disadvantage. In reality, during all the years 2009 to 2015, I was struggling to do justice to my mother. If old age is a countryside, the care foot soldier’s population is once again largely female. Daughters, not sons, are expected to do the care work, although there are a few exceptions. There are female carers and domestic helpers, and predominantly female care workers in aged-care facilities. I know families of several sons and one daughter, where it is the daughter who is expected to do the caring for the elderly, no matter what her profession or whether she lives interstate.
The next word which would emerge, straight after care, is ambivalence. In her award-winning account of early motherhood, Maternal Encounters: The Ethics of Interruption, Lisa Baraitser writes of how confused new mothers can be, while everyone thinks she should know what to do, and judges her closely and harshly if she does the wrong thing. Caring for an old person is very like mothering. The new ‘mother’ of their old parent may feel every bit as confused about the ‘right’ way to care. And caregivers can be ambivalent when they discover what the right ‘thing’ is, because it may carry with it a dilemma: the moral imperative to swing their attentiveness, time and energy toward their parents in a way that makes cherished and financially necessary work impossible. There is so much heated discussion about ‘work and family’ which exclusively concentrates on the so-called ‘baby versus briefcase’ conflict. There is much less conversation about the ambivalence and confusion loving adult children might feel on hitting their stride in a career, and being torn away by the entirely legitimate needs of a frail parent. Instead the story is told in whispers among friends or siblings, ‘What I must do, what I can do, what I cannot do. Have I done enough?’ And there is guilt over that ambivalence even as they act well, or guilt over the relief they feel when they arrange alternative, non-familial care, however satisfactory.
We make it up as they go along, constantly aware of cautionary tales of repellent examples of negligence and even cruelty by adult children to old parents. I hear one person say out loud she would like to take her elderly mother and dump her in another state. Several nursing home proprietors told me they had many residents who were never visited by any family member in all the years they had lived there. I hear a son talk of driving hours every Saturday for years, to sit in a locked dementia ward with a cruel father who had made it plain he never thought much of him. And everyone struggles with the fact that however good the alternative care, there are some aspects of a relationship which can never be commodified, where only love matters. No outside carer can ever have the shared history nor the emotional salience of an adult child. An adult child, even if they are decidedly unlovely to their elderly parent, is irreplaceable. A paid carer, even a lovely one, is replaceable.
So much has been written about maternal ambivalence. But if the colour purple reminds me of fidelity, then it must also include fidelity to the truth, and if the truth of mothering contains ambivalence towards what is asked of us, then even more so does caring for an old parent. There is much greater pleasure and joy in small children, and their becoming, and the love they give, than watching an old person disappear, their unbecoming. In dementia, as the capacity to recognise the Other disappears, so too can their capacity for sensitivity, empathy, and even love. Old age, like early motherhood, too can be shrouded in pious sentimentality. People addressing an old person raise their voices a pitch or two, sounding oh so nice, just as when they are speaking to small children. And they can register shock if the carer is resentful. Gender norms again go into overdrive. Like the Good Mother, the Good Daughter is not meant to get angry.
But adult children do get angry. Partly grief and anger are indissolubly linked, and with dementia the process of mourning a parent begins long before the moment after dying. But it is not only that. It is also an anger at how they are treated by their old parent which would be so unjust if their mother or father was in full possession of their faculties. At first, they look alright. Yet a moral lethargy can settle over them like a dense fog preventing sight. Melbourne writer Fran Cusworth recalls her mother’s indifference to losing her small grandson at a shopping mall. She looked like the same responsible adult she had always been, but now wasn’t. The elderly parent may have a huge effort directed at their wellbeing and yet not notice, querulously finding fault like a needy and resentful child. People are awfully pious, and look shocked if an adult child expresses not grief but rage at the treatment they endure as their ‘loved one’, as the well-meaning government brochures likes to call them, attacks them verbally or physically. Sometimes people become sweeter in nature, more expressive, perhaps like the child they once were. But they can also become nastier or more rage-filled, or express prohibited desire. Part of the unravelling is the disintegration of the frontal lobes, responsible for social inhibition. A website explains politely what to do when the ‘loved one’ masturbates in front of you. Or when the ‘loved one’ (your father) wants to have sex with you. I know some good Catholic daughters who organised a roster to sleep each night in his house to care for their father; how lovely, you are thinking, how nice, except it wasn’t nice at all. The father no longer recognised them and made sexual advances to them every night. The next morning they would be up and preparing his breakfast as if nothing had happened. Other times he smeared his name in his faeces on the wall, or screamed hate at them.
All this is easier perhaps if the parent has been loving, also easier if the child is unselfish … but what about giving care unstintingly, mobilising a whole family when the parent in question has been incapable of that kind of care themselves? Or treated their own old parents with indifference? The pleasing moral symmetry of reciprocity, the loving parent’s care being repaid by a grateful child, can go seriously awry. A loving parent is neglected and ignored by an ungrateful, selfish child. Or a neglectful parent somehow manipulates children’s guilt and has them flapping around him in ways he does not deserve. Frailty can make long-standing self-centredness finally justified. With small children they usually give love back in spades; a person with Alzheimer’s often doesn’t. Here the adult child has an enormous amount of emotional work to do, to disconnect the care they give from the treatment they get now, or the treatment they received as a child.
The next, rather unexpected, word my free association with the colour purple would produce, is time. Our relation to time changes, Baraitser points out, in the maternal encounter. The mother is ‘a subject of interruption’, and as a consequence time becomes no longer linear. Time slows, becoming, she says, using a lovely word, ‘viscous’, thick, like treacle, slow moving. The arrow of time we follow frenetically, anxiously at work, ‘becomes a dotted line, a series of segments with breaks in between’.1 As a mother she is interrupted ‘mid-sentence, mid-mouthful, mid-thought and in the middle of the night,’ and there is constant stopping and starting of tasks. With the frail aged person who becomes dependent on an ethic of care on the part of family members, being ‘a subject of interruption’ is not so very different. A fall, a medical crisis and then another, cannot be planned for. The more hands-on the care is, as when the carer lives with someone with Alzheimer’s, the more intense the experience and more similar the ‘interruptedness’ and parallels with ‘maternal encounters’, including the emergence of a new kind of self in relation to a vulnerable Other.
And just as Baraitser says, because there is so much ‘stuff’ to transport with infants – the bottles and nappies and wipes and prams and changes of clothes – one’s relation to space changes too. The same is the case with the frail elderly. Whenever we set off, there is lots of ‘stuff’. My mother’s new frailty means there are hazards everywhere; once she almost falls at a small step in a cinema. The vigilance that I once needed with small children returns. I do a continual reconnaissance ahead of an outing as to where the bathrooms are and how disability friendly they are. To get to an art gallery is an expedition with pads, fluids, snacks, walking trolleys, and we need ramps and absolutely no stairs. We experience firsthand how few places cater for a disability, as even with a walker Mum can only walk half a block. We walk slowly, and stop every fifty paces or so. Sometimes she needs to sit on her trolley. Everything is done slowly.
I first really thought about cultural ideas of time forty years ago when I was sitting on my backpack on an Indian Railway station. It was long before coal-fired power stations could be seen from satellites as India underwent industrialisation. A vast network of rail providing cheap travel since the British Raj was nevertheless run in a highly inefficient way. Trains never seemed to arrive or leave on time. Once I was sitting at the station for several days. We would wait until late afternoon, go back to our hotel and then wait again the next day. Western travellers would go over to the window and an angry conversation would start while the Indian ticket vendors shrugged or suddenly could not speak English. One man in particular was in a rage of frustration the whole time, a purple vein bulging and pulsing in his forehead. He walked up and down gesticulating and speaking out loud to himself, raging at the ticket man, pacing, his neck continually craned down the line anxiously waiting for the train. At one point I chatted to him, thinking he might be missing out on a meeting with a beloved in far-off Mumbai. He wasn’t. He was just going to another holiday destination on a yearlong overland trip to Europe. He actually had all the time in the world.
It was an encounter with a different time zone, determined by culture. We forget in the West the astonishing change in our consciousness demanded by industrial time, deadlines, set working hours, lives no longer set by seasons, of light and darkness, of harvest and fallow. Western travellers responded to the vagaries of the railway in different ways. I would slip into a writer’s reverie and scribble in my notebook, lost to the world around me. In truth? I was quite happy, and I admit that sometimes I was rather peeved when an ancient locomotive finally sputtered into view because it meant breaking up ideas that were flowing, sudden action, packing away my pencil and notebook, rushing to get a top bunk, and a window that opened.
Returning home I never felt quite the same about time. I began reading about how the working class and children were integrated into the discipline of industrial time, the factory sirens, the school bells, the endless measurement and disciplining of their relation to time. Submission did not come without struggle. My metaphor of the Indian Railway often sustained me during childrearing, where plans are routinely capsized and nothing seems to arrive, career-wise, on time. You get there, I told myself, just like on Indian Railway, in the end, even if not on time. And there is a lot of pleasure along the way.
But I was younger, and time seemed an infinite expanse stretching out ahead of me. Now I have lived far more years than I have left so my relation with time is less dreamy. Moreover, a writer’s life is full of deadlines, which last year were especially pressing as I had a new book out. It now takes me a little while, and no little moral effort, to relax and get inside the Slow Zone of Care. When I come to see my mother, a game of cards at first seems interminable. I find it hard not to check emails on my iPhone. Sure enough when I finally succumb and sneak a look, there are all kinds of work obligations, interviews or request to give talks I should immediately attend to. I pause shuffling the deck of cards and send messages back to my publicist with a satisfying sound of a whoosh like a rushing wind, as if to emphasise the speed of the device I am holding. But this device also traps me: I am expected to respond at once, in a mere millisecond, to never be away from work, an expectation of instantaneity. As I spend more time here, slowness gets easier and easier, and more enjoyable, just as it did on Indian Railway. The book tour is finally over and the imperatives of work slide into a fuzzier focus, they are no longer in sharp, hard outline.
Our relation to time is deeply hierarchical, and shaped by culture. Time is a status marker; anyone giving time to others is usually lower in social status. There is a subtle or not so subtle downgrading of anyone in the Slow Lane. Time is also deeply gendered in a way that is quite simple, with a profound, long-lasting impact on women. Women’s time is still meant to be available to others, for care, with what’s left over devoted to paid work. Men’s time is meant to be made available for paid work, with what’s left over available for family. The assumption is they are a care commander who has a female care foot soldier doing all the care work. ‘Good’ women are marked by their willingness to give time. Women have traditionally acted as time sentries and time wardens, preventing intrusions into men’s time as wives, secretaries and assistants, and as conservers of the family time bank, able to be drawn on as needed. ‘Don’t Disturb Daddy’ is the name Susie Orbach and Luise Eichenbaum gave the phenomenon of tiptoeing around men’s time.2 Women’s time in contrast, seems porous, a door that is always open. Care of the aged still carries an assumption that a woman, this time a daughter, is not at work, has all the time in the world to attend to her old parents.
Even the oft-used word, ‘spent’, to describe time passing, is not innocent of its impact on how we see care. It shows not only the irrevocability of time which has gone, but of new, exploitative attitudes to time; that it ought to be about productivity, and efficiency, all the opposite values of any ethic of care of the frail aged, especially someone who is losing any sense of the straightness of Time’s Arrow. ‘Spend’ also carries inflections of the domineering relation of the business world, of ‘time is money’, of males at the top of the hierarchy whose attitudes to care go unchallenged. ‘I am too busy and too important to “waste” time on care.’
And yet … my last word on my analyst’s couch connected to purple would be courage. ‘Old age is not for sissies,’ says one of Mum’s friends, quoting Bette Davis. I am often silenced by my mother’s courage. I don’t want to sentimentalise this period in her life, but her matter-of-fact braveness is one reason why none of this is simply burdensome. As Baraitser says, an ‘encumbered experience is in an odd way generative’. How did an unencumbered life, so remote from most people’s experience, with such vasty unequal consequences, ever become an ideal? All this time spent with my mother is deeply valuable to both of us. Certain ghosts in the mother knot have been laid to rest. Sometimes I have struggled to get here, but our time together can be quite lovely. My mother is more expressive of affection than at any other time in her life. I find new sources of respect for her, or perhaps rediscover them. I am moved by my mother’s gritty stoicism, her adaptability, her uncomplaining resilience. Especially I admire, how in spite of everything, she goes, full of joy, into the Whipstick.