In the early days there were things to do that didn’t quite look like care but filled time nonetheless. These were: going to the beach; going for a walk; going to the café; tidying the house; working in the garden; running errands. We were together and we were doing things, punctuated by occasional words and attempts to untangle the opaque situation. Most of it seemed like quality time. The early days were last year and the year before.
Perceptibly, from the early days until now, more recognisable forms of care have come to occupy our days. Eating, washing, toileting, moving around. A gradual intensification of how we intervene in Mum’s life, a process indexed to the gradual atrophying of Mum’s muscles and cognitive ability. In the early days when people asked what I did on my days off (or, why don’t you work full-time?), I would say, ‘I hang out with my family.’ Now I say, ‘I care for my mum.’
In the morning, as soon as she is awake, Mum likes to get up. If Dad is home he will help her out of bed, walk with her to the toilet, help her use the toilet, walk with her to the couch in front of the window, help her to sit comfortably, and plant a book in her lap. If Dad is away for work my siblings or I will do the same. Next there is food: a beige liquid enticingly called Jevity HiCal that we are told contains all the nutrients a human needs. We pour this into a tube and gravity magically pulls it directly into Mum’s stomach. In the mortar and pestle we pound medications into a fine powder and dissolve them in water. These too go down the tube. Then showering, dressing, brushing teeth, physio exercises, and the intimate work of cleaning eyes and ears and noses. At an unrushed pace these morning rituals take about 45 minutes. Sometimes we ask Mum, ‘what do you want to do today?’ and she writes, ‘I want to go to the shop,’ referring to the tiny corner store where they know to make her chai latte half full and hold off on the biscuit. Her small boxy handwriting, which once filled the page at a furious pace, now requires time and great effort. You speak until you don’t, you walk until you don’t, you write until you don’t.
There are questions about how to get to the shop, and the answers change weekly. Transport the wheelchair in the car down our steep driveway, take the chair out of the car at the bottom of the hill, then push Mum to the shop? Drive in the car the whole way? Take the walker and hope that Mum’s legs can still make it there and back? At the shop people come up and kiss Mum on the cheek or shout a cheery hello. Mum can’t tell us their names so we smile back and hope they don’t expect us to know who they are. Mum is our linchpin and historically we moved comfortably – complacently – in her orbit, trusting her to take care of names and dates and social connections.
The morning is busy and full of care. Then there’s the rest of the day, during which Mum watches re-runs of primary school musical productions she wrote and directed, or the Netflix selections curated by me and my siblings. There’s more feeding, more assisted moving around and more toileting, but there are also expanses of stillness and quiet. During the stillness I try to stay alert to subtle forms of communication like a lifted finger, which can mean, I want to put my arm higher, up on my lap. The other night I helped her to lift her left hand from the seat to her lap, after which she inched it over towards her right hand and used her pointer finger to squash a mosquito on her right thumb. Sometimes she looks towards the window: this can mean close the curtains, or someone is coming up the driveway.
The doing and being that I am intimate with is the doing and being of productivity. How could it not be in this world where our preferred way of greeting one another is comparing worn-outness, where success is securing a full-time job. A world where how are you? and been busy? are interchangeable salutations. At my paid job as a teacher and carer of four-year-olds we are trained to think in terms of staff utilisation. As soon as we have more staff than the mandated one per ten children we are encouraged to ask ourselves, how can we optimally use this spare capacity? What documentation can I get stuck into, what resources can I order, what space can I tidy? Being and playing with the children in a relaxed above-ratio manner is a guilty pleasure, a waste of precious time. Government support for early childhood education is contingent upon it facilitating and generating productivity, freeing up parents to engage in paid work, and fashioning children’s minds so that they too can one day enter the wage relation. Subsidies for childcare are linked to a parent’s commitment to at least seek paid work, if not engage in it.
The anxious disposition of productivity beats in my ribcage as I try to practise vigilant stillness. I tell my body that being with people you love is doing something, the most important thing, in fact. I try to unlearn the way I know how to move through the day, which is ticking off check-boxes.
My brother and sister and I have gravitated home to be with Mum in the final stretch of her life. In the early days, when Mum was still able to be on her own or to spend time with her wide circle of friends, I tried to lighten the load and practise care by organising and tidying. Ringing specialists and booking appointments. Categorising and labelling towels and Christmas decorations in the hall cupboard. Sorting the kitchen cupboards, where I found my grandmother’s stale nutmeg from a few decades earlier and seven tins of condensed milk, one with a faint ‘best before 1993’ stamp. Mum’s role as family archive and archivist slowly and wordlessly devolved to the rest of us, although she held onto it tightly for as long as she could.
One of my main self-appointed tasks was tidying Mum’s room, a perpetual mess filled with sewing material and teaching resources and our school newsletters from kindergarten. I told myself I wanted her to be able to use the room now that she finally had time. I oscillated between my own rubric for what to keep and what to throw out and what I supposed Mum’s rubric to be. Sometimes Mum would stand watching me, rescuing the papers I put in a recycling pile. Turns out I wasn’t practising care or spending time with Mum; I was further wresting control away from her. Eventually I shut the door and left the room only slightly less messy than before.
In the early days, in the middle of last year, my brother arranged with his employer to work three weeks on, one week off. In his week off he travelled from country Victoria to coastal NSW to spend time with and care for Mum. He had plans to make the house more liveable and accessible in anticipation of Mum’s future needs, and to undertake some of the projects that had been on the family to-do list for years. As a carpenter his skillset was suited to the moment. In a conversation about his new arrangement, he mentioned to me that he was going to ask Dad to pay him a bit of cash for the work at home, as he planned to put in full days and would be forfeiting a week’s wages every month.
This did not sit well with me. I knew what he had to offer seemed more like a remunerable contribution, but I also knew the big, visible, permanent building projects were only made possible by other work, even if that work was going to the cafe or to the beach with Mum. He created amazing things in his monthly week at home, including a winding concrete path up a steep rise for future walkers and wheelchairs. On my own regular weekly visits home I did the washing and organised appointments and slowly cleared out various corners of the house. Invisible repetitive feminised stuff. Often I just sat with Mum. I talked with him about my discomfort and he agreed to drop the question of remuneration.
Later on, my brother moved home for the foreseeable future. No paid employment, just being at home, spending time, showing love. Replacing rotten decking (skilled) and helping Mum get dressed (unskilled, or so we’re led to believe). He asked me again about payment and in the absence of other paid work it didn’t feel wrong anymore. In that moment, as well as in many others throughout Mum’s illness, my well-worn practices of interpretation didn’t seem flexible or ample enough for the scenario at hand, and I began to lean a little more heavily on feeling.
My brother works outside, I work inside, my sister moves between the two, growing vegetables and hanging out washing and digitising the family VHS archives. Even though we’ve begun to learn to sit still, we continue to show our love by doing. This is how Mum showed her love too. We never went out for breakfast or sat and read our books together in the glorious sunshine that saturates our east-facing house. Instead she baked us biscuits and drove us to music lessons and wrote musicals for the local primary school and walked elderly friends’ dogs as well as washing all of our clothes and packing our lunches and tidying when she got a chance. When I read over old emails that Mum sent (not the ones I really want, the daily updates she sent me when I was desperately homesick as a fifteen-year-old exchange student – those emails have vanished into Microsoft’s deepest archives), she makes lists on the go as she types, always fitting in a quick blast of communication before heading off somewhere. She went to bed later and got up earlier than the rest of us, and the potential effect of this chronic sleeplessness on her illnesses continues to haunt us.
Even as she began to move within the confines of her diagnoses, she pushed against these confines by making stuff. In particular, she made embroidered appliqué cushions for friends and family. The Lady and the Unicorn exhibition had just closed at the Art Gallery of NSW; Mum had bought a book of patterns inspired by the tapestries. Mine was the first, a unicorn jumping through a wreath of embroidered flowers. The unicorn is fluffy and round like a lamb, much less austere than the medieval tapestries it references. Then lyrebirds, trees, brolgas, owls, kookaburras and dragons. The pattern sat open while she sewed but her fingers followed their own design. She loved making the cushions and especially loved the joy they brought people, but she was also doing the work of staying active, not-dementing, of rementing. Keeping busy.
I fixate on the memory of a holiday we had in Scandinavia after I finished my exchange program. It was the first time I’d been overseas and the first time we’d been on holidays like this, just the two of us plus Mum’s best friend and Mum’s best friend’s daughter. We stayed in hostels and tiny apartments and friends’ places. I was used to the work of camping, Mum cooking and washing up and filling water tanks. Although I now recognise that Mum would have put in hours of work to organise the trip, I was fifteen, and in my memory it was a time when she moved with a new lightness and spaciousness. Mum’s friendship with her best friend was different from her other friendships; they related to one another by just being, talking, walking.
It was winter so many attractions were closed, but we didn’t mind at all, the mood of lightness and spaciousness had taken hold of us, and we spent our time wandering, eating pastries, feeling the crunch of frost or snow under our feet for the first time. I have two photos on my wall from that holiday: one a white mountainscape taken from a train window, the sunlight just touching the highest peaks, and the other Oslo harbour, pale water beneath snowy hills and grey sky. Still, quiet, slow-breathing landscapes.
At the preschool where I work parents sometimes ask me questions that I find embarrassingly hard to answer. Like, who is my child playing with at the moment? Who are her friends? In the heat of thinking and doing logistics I can forget to stop and observe the children as they exist for themselves, outside of the clamour of workplace productivity. (There is also a lot to be said about the differences between care work for a wage, with its attendant pressures of profitability and efficiency, and care work undertaken within a family or community, where such pressures are at a remove. I have written about these pressures here and here, as have others.) With Mum I have done the hard yards in sitting still and watching. All the slow, still time is time learning to read and interpret her communication and her body. Her illness is fast-moving, so our learning is constantly in flux.
Despite our close and careful study of Mum’s evolving modes of expression, our interpretations are murky. In the early days, when she could still talk to us, we already understood that there were slippages between what was being said and what was being expressed. Walking to the shop one day, just after one of the diagnoses, I asked Mum how she felt. ‘Do you feel scared or confused?’I asked. ‘Scared and confused,’she affirmed. Mirroring my own interpretations back to me. ‘Try putting it in your own words,’I persisted. She began to cry.
There are some things I try not to analyse too deeply, afraid of how unstable our established lines of connection might be. A smile, for example, I take at face value. If I choose a film with singing and dancing and a heartfelt narrative, I can be reasonably sure that this will make her smile, which I read as an expression of happiness. For this reason Hairspray is on high rotation. My siblings and I perform for Mum, create silly dances, make fun of one another, tell poo jokes. This makes her laugh, which we again read as happiness.
In other instances we wade through our imperfect interpretations and historical knowledge and personal biases and collated data to nut out: what is quality of life? When we walk around the bay, me pushing Mum in her NDIS-funded chair, her neck droops down and she watches her lap as we roll past boats and pelicans. She doesn’t want to wear the high-tech neck brace recommended by the physiotherapist, it seems to hurt her neck and constrict her breathing. She doesn’t smile as we roll and walk, except if we see someone she knows, which happens frequently. Sometimes mozzies bite her arm and I don’t notice until too late. Does she like going for a walk, getting out of the house? I’m not sure. Is she measurably happier going out to the regional art gallery or trying to do a puzzle than sitting in her chair watching feel-good musical films? I would say no, my dad says yes. How much should our knowledge of past-Mum figure into how we relate to present-Mum? Dad says ‘there must be more to do than just watching TV, Mum was never like that.’ But Mum was never like this, unwell, immobile. Things that were once clear-cut and also not our responsibility have become collective questions to wrestle with.
In the novel Hot Milk by Deborah Levy, Sofia is unsure of how to prepare water for her mother, who lives with chronic and undiagnosed pain and disability.
I will get her water and it will always be the wrong sort of water. I am not sure what water means any more but I will get her water as I understand it: from a bottle in the fridge, from a bottle that is not in the fridge, from the kettle in which the water has been boiled and left to cool.
The body’s evolving needs cannot always be read or heard clearly, let alone met successfully. We hope our cycles of interpretation spiral closer to something like truth, but it’s likely we’re ricocheting off walls.
Joan Tronto says that part of care is determining whether it has been well-received, whether it has been effective. She says each act of care requires us to look again: ‘looking again will lead to recognising new needs, and the process repeats. Endlessly.’ This is the hardest part, precisely because the rubrics that help to determine effectiveness or productivity in the rest of our lives have no bite here. What we do have is what we’ve learnt from sitting still and being present: this is the necessary structure of our care, despite its imperfections.
There are so many things to observe and so many things to mourn. My brother’s hands and my sister’s hands and my own hands are veiny, like Mum’s. Because my hands are like Mum’s, and because I always associated her veiny hands with knowledge and skilfulness and strength and hard work, I have been happy with my hands. ‘What part of your body do you like the most?’ teenage girls sometimes ask each other. ‘My hands,’ I would always say. Mum’s hands were cool to the touch, perfect for stroking heads or knees. Did Mum stroke our heads? I think so. I’m not sure. A few weeks ago I noticed that the veins on her left hand had almost entirely disappeared. The blood doesn’t circulate as vigorously as it used to and the fingers lie almost still, except to point sluggishly at the curtains that need closing or mozzies that need to be squashed. Instead of its usual olive colour the hand is a reddish-purple. It is a sick and unused-looking hand, but I need to find a new beauty in it, in its softness and slow precision. Not to make her illness heroic or aestheticised, but to continue to show her that her body is loveable and desirable. Something like what Maggie Nelson does in her poem ‘A Halo Over the Hospital’:
. . . you’d never know
your skin hung on a rack
and they gave you titanium cheekbones
and a titanium jaw, I couldn’t tell either
until I brushed your teeth
trying hard to dislodge the morning’s oatmeal
while avoiding the broken ones
Some in the front are apparently little stumps
and inside your gums, an astonishing gnarl of metal
Such miniature machinery! You are truly
a cyborg now, the metal of your jaw linking up
with the metal of your cheekbones, behind the scenes
Now your skull is literally shining. And your arms
can move much more than I thought, and your grace
is utterly intact. But your mouth gets so dry,
I have to trace your delicate lips
with a finger laden with balm, cherry balm
from a tube, make sure my hands are clean
then reapply, reapply.
The poet is at once elbows-deep in the grunt work of cleaning her friend’s teeth while also awestruck by the life-giving technology that sustains her friend. She performs the necessary repetition that maintains her friend’s wellbeing and dignity, while delighting in the specificity of her friend’s body. She shows us that care for a loved one is life-giving for both the carer and the cared-for. That care is not just the physical or emotional support shared between humans but also encompasses, in Judith Butler’s words, ‘the environments, the machines, the complex systems of social interdependency [that are] constitutive dimensions of human survival and flourishing’. That care is at once constituted by philosophy and feeling and monotonous materiality. That grief and beauty and curiosity and tragedy and joy move like water in the same pool of experience.
I too clean Mum’s mouth over and over. I watch it so closely that it almost becomes my own. My siblings and my dad and I talk about it in the middle of eating lunch or playing music or watching a movie, it is our project. Wash hands, clean her lips, moisturise her mouth, apply paw paw ointment, wash hands, repeat.
I’ve made a series of decisions to facilitate my ability to care for Mum. When I got my current teaching job I asked to work four days instead of five. After half a year I asked to drop down from four days to three. When the virus came along I asked for time off to avoid carrying it from my germy workplace of sixty children to her body. Each time I questioned myself: Am I using Mum’s illness as an excuse to work less? Am I really needed at home as much as I think I am? What if she lives for years rather than months? As if I believed she was worth my efforts for only a defined period of time. I wish these questions had never even occurred to me, but a social mode of being that values productivity above all else holds tight.
Some alternate questions: Will I be able to survive economically only working three days a week? Yes, easily, I have no children and no mortgage, also, I have access to a welfare system, long live the social safety net. Do I have another mother? No. Do I love her and want to spend time with her? Yes. Is my care and love interchangeable with my dad’s care and love or my brother’s care and love or my sister’s care and love? No. Do I want my dad or my brother or my sister to burn out from bearing too heavy a load? No. Is anyone watching me to judge my effectiveness or productivity? Absolutely no one. If there was should I care? No. Am I an unquantifiable part of an apparatus of support that, in its fumbling way, is reciprocating the care and attention Mum showed us our entire lives? Yes. That should be enough.
Judith Butler, Notes Toward a Performative Theory of Assembly. Harvard University Press: 2015.
Deborah Levy, Hot Milk. Penguin Random House: 2016.
Maggie Nelson, ‘A Halo Over the Hospital” from Something Bright, then Holes. Soft Skull Press: 2007.
Joan C. Tronto, Who Cares? How to Reshape a Democratic Politics. Cornell University Press: 2015.