Interior of a rest home dining room; vinyl tablecloths, hard chairs, two residents seated.
(Photo: Sohl via Getty Images)

A true story of caregiving in Aotearoa

Derek Schulz is a poet, disability advocate and support worker. Here, he writes about his work in the lower North Island about 15-20 years ago. 

This essay is excerpted from the excellent new anthology Strong Words #2: The Best of the Landfall Essay Competition. 

Kiwi-Made

We were taking home $9.20 an hour so we weren’t in it for the money. We cooked, we drove, we dressed, showered, toileted, entertained, learned how they spoke without speaking, disputed with their doctors, eased them through their furies and their seizures, cleaned them up afterwards, administered the drugs, sat with them in the ambulance. We fitted the catheter, tucked them into bed, fretted through the night then came back in the morning. We became the everything that no one could bear to be.

That kept them all together.

Sex was a problem the manual sorted for you. Encourage them into their room. Close the door. If they’re doing it by the window, keep a blanket handy. Throw it right over. It wasn’t any help at all, but my female workmates were experienced, deadpan, ribald and indispensable. They never missed a trick and would giggle all the way back to the lounge. “Harry’s back in the bathroom, do you want to join him?” they would enquire, then hive off to conference in the garden. I tried things: the long walk, chocolate cake on the garden swing, the knucklebones that he always loved to roll in his cupped hands and shuffle round the table. After which he’d head straight back in. Finally, I got the message and left him alone. Then went back to clean up the mess.

Harry was deaf, blind, mute and 61 years old. He remained one of life’s mysteries. Rubella had gone through his mum like a bushfire. He walked like he’d been on the sauce for a week, but when you took his arm you found he was balanced and true. It set up a curious rhythm between you: a foxtrotting pas-de-deux. Blind and ID’d though he was, within 24 hours he would figure the layout of a house he’d never been in before. He went around each room, arms splayed up against the walls, tapping the spatial arrangement into his memory. He’d had a boyfriend before he came to us so we assumed he was gay, but he would try and force it on the women just the same. They’d talk it through among themselves and never made a fuss. When he wouldn’t eat his veggies we mixed them in with his chips. That isn’t in the manual. He’d sit there picking out the beans until you knew just what he was thinking. He was a choke risk and everything went into his mouth. You had to watch him like a kāhu, and the older he got the worse it became. Much later, when I heard the news, I went around to support his supporters. They had found him sprawled on the floor. It was no one’s fault yet they blamed themselves anyway. You can’t help it. “I should have done this.” “If only I had … ” “How can I live with it?” They churned it over and over.

All for $9.20 in the hand.

Women are a lot more complicated. Brenda caught me once with her fist, right between the eyes; the second time, when I saw it coming, I jerked my head back straight into a cupboard door. She was blind too but could break her bedroom windows, strip off and lie yowling on the lounge floor while filleting her arms. She’d keep it up for six hours straight and you’d get resentful. You couldn’t leave her, and there were five others in the house.

Gena was 40. She had no language and would stand in the bathroom, back turned against the world, screaming at the wall. You knew it was only a matter of time and hoped it wasn’t on your shift, but when I got back one morning she’d smeared faeces right round her room. Gem cleaned the floor and walls, I did the sheets, the blankets, the pillows, the clothes. It wasn’t easy because you had to scrub it off first in the bath. But it sorted out the staff. You could see it in their eyes. Some never came back the next day. Then the accountant would ring. “You used too many rubber gloves last month!” Did he get the raw end of Leah’s tongue! “I’m sending that twerp the used ones!” she said as she came steaming back to the kitchen.

It helped having men in the house. Gena started to become a woman again: offhand, touchy, curious, sunny, good-humoured, irate. Her notes carried the warning that she could micturate on your feet if she didn’t like you. One day in the bathroom she gave me a bold, decisive stare, then turned, shuffled away and pissed all over the floor instead. It came out like the Huka Falls. She’d bagged a few of the others so it felt better than winning the lottery. We had to put her back in overalls during the night. But there was one worker I never could trust. She’d pitch Gena into the shower, bundle her into bed before seven then clear off home early. I’d go straight in to check. One night I found Gena choking, the cord of her overalls tightened round her neck – but only so much. It was deliberate. I was pitched into a fury, but managers are knock-kneed and duplicitous. They would sit on trouble like that then turn it round, so I handed it back to the women. They knew how to get rid of suspect workers.

The psychologists had rated these guys as children and Gena came in around the age of five. It was intellectual marsh gas; the dilettante musings of a smug Behaviourism. Once you could see past the disablement, she would swing back to her age. But how difficult this was to gauge, for she was a born mimic and would effortlessly acquire the tics and follies of her housemates so she wouldn’t stand out. She would give her doctor a curious stare – Who does he expect me to be today? But then the world would get too much again and she would disappear into herself for days at a time. Her behaviour was typical of severe brain injury and her notes spelt out the tragedy: she had fallen from a swing as a three-year-old. No one believed that.

Aroha was working around the clock. She slept over in a rest home then came in for a morning shift. She’d sit in the lounge watching Prince Tui Teka hamming it up on Māori TV. It was all in te reo and she’d be beside herself, chortling on the sofa with the boys, but if I asked her to translate she wouldn’t. “It’s too rude for the Pākehā,” she would rule, magisterially. Then try to look ashamed of herself. 

She and her husband never missed a Sunday service and would take along the guys who were up to it. One night one of her pōrangi’d souls at the rest home contracted norovirus. He’d dragged it through the house and it had taken her all night to clean up. “I’ve showered,” she said when she came in, “but can’t get rid of the stink.” I sent her back to the bathroom, then home, and covered for the rest of the day. You’d get sacked if they found you out, but fuck them. She never forgot. From there on I’d get the big kai breakfast anytime we shared a shift. Nothing was too good. She’d wait till we’d got the guys away then fry up the chips, bring in the fish, show me how to marinate it the Māori way, grill it and drop as many poached eggs on top as she thought I needed. Blue cod. The kina was for afters. It cost as much as caviar but was mana for the soul. You scooped it out of the jar with a spoon. “One for me,” she would say, then “one more for me,” before stopping to offer me some. She’d give me a meaningful look, meaning: she didn’t want to share.

When I said I liked it she wouldn’t believe me.

Cover of the book Strong Words, covered in text, a dark maroon colour

The second of the Strong Words collections, drawing from the Landfall essay competition (Image: Supplied)

For 70 cents less you could work in someone’s home, but you paid for the petrol and the wear and tear on your car yourself; seven days on a rotating shift, 400 kilometres a week. They put you to work like the self-employed while the taxpayer pocketed your expenses. Then there were the rest homes you had enabled them to shut down. I was learning what government had become: a preening ground for wide-boy traders; a treasury stacked with hard-boiled nuts. They demanded everything for nothing but it was never going to be enough.

Out here in the suburbs it was even more of a wilderness because they sent you to their incorrigibles first. I soon felt right at home. Deb was in her 60s and looking after her husband Jeb. He’d had a stroke, a bad one. No language, no movement in his arms or legs, but he was all there just the same. They always are. But in Deb I found another. She had filled herself with an allure she couldn’t bear to part with. There was no gentleness to her touch. No softness in her mind. She knew exactly how to get him back: through the sheer force of her will. He couldn’t move but would fall out of bed at night, or she’d slap him a little, right in front of me. I tried to show her a better way but she wasn’t having any. The bruising was the last straw and could have been pinned on the worker, so I let her have it, both barrels. Jeb couldn’t speak but he began squirming and squawking for Deb. I was blindsided. Was he enjoying it? Fortunately, I had an 18-year-old student with me. Management wouldn’t believe me, but when the company got her wide-eyed report they dropped the Care from their books.

I was beginning to learn the trick of it. Leave well enough alone. It’s their minds you’re being paid to work with. Even where they’re assessed as not having one.

*

Now that I’d got a name for backing into trouble, they sent me along to their next incorrigible, Sayl, a brawly millionaire. He’d deliberately leave cash on the dresser to try you out, and ran his bathroom like he’d run his company. “Straighten the towel.””‘Clean that fucken mirror.” “You leave on my say so.” “You call that clean …?”

The tempo rose and rose until you had to have it out. I dug out something from inside I didn’t know was there and looked him back, straight in the eye.

“You can stop that bullshit right now!”

He was stunned and pleased, but when I got back in the morning I found him still in his bed. He hadn’t slept and had grown purple through saving up what he had to say. “Now you listen to this,” he said. “I’ll say what I fucken like in my own fucken home. You got that?” “Absolutely, Sayl,” I assured him, then set out his grunds for the day.

We’d both won, so we started to get to know each other.

I was an E Tū man, steadfast and staunch, yet I liked him immediately then tried to work out why. He was phlegmatic and soured and had a brand-new wardrobe – Icebreaker jacket, Barkers trou, silk shirts, show-day shoes, Vivian ties and a bottle of eau de cologne, thrown back into his drawer. Slowly the story came out. His previous support had been 31 years old, leggy and ambitious. She’d dressed herself to prove it and would help him out in the shower then take him to London’s to flash him up again. She thought she was getting $40 million. He thought he could get it for free. There’d been a sorting out. He missed her brash conceit and was furious with himself for falling. But it went a lot deeper.

The stroke had taken out his left side and he would kick himself along on his right with the walker, dragging the leg. Day by day, week by week, he’d punch out the miles from lounge to hallway to bedroom to hallway to lounge, clawing the movement back. But I could see something he couldn’t – a rising organic disorder, the struggle to recall, an accruing distress. There’d be a week of irascible tantrum then he would have the turn that would restore him to himself, mostly during the night I suspected. The change was barely perceptible, but there was always that little bit missing. It was affecting somewhat more of his brain than the machinery that controlled mobility. A little less stress with the walker might have helped, though you had to admire him. But as the months rolled by, you sensed a grudging acceptance. The hard graft and my gritted teeth were paying off.

It took one of my queer dreams to find him out. They switch on like a light then off again just as curtly. In this one I found myself watching him tooling round in one of my other Care’s bathrooms. He seemed quite at home until his legs suddenly scissored from under him. It woke me with a start. I have these dreams all the time, but how are they cooked up? Is that the right question?

Does it even make sense to ask? Where to start? How to start? At first you overthink them, but then just go with their flow – while keeping the news to yourself.

This one seemed even loopier than usual until I got to work. Sayl was staying in bed for the day. He’d come a cropper in the bathroom and blamed himself. He wasn’t saying, but I could see he’d had the turn and it had dropped him to the floor.

“I’m staying in bed,”  he said. “I’ll bring you some breakfast,” I argued back. But he wasn’t having any. “I’m a fool,” he confessed, “come back tomorrow.” I left my home number beside the bed and explained how pissed I’d be if he didn’t use it. We all did it sooner or later with Cares like Sayl. You’d get sacked if they found you out, but fuck them. He signed my sheet and sent me off with a grin. My next stop was Brett. It was her bathroom the dream had shanghaied Sayl into, but she wasn’t there. She’d had the turn too and been rushed back into hospital. So I had a day to myself on full pay. Twenty-five in the hand, minus petrol.

All on the taxpayer’s largesse.

At Christmas Sayl sent me down to his wine cellar to fetch myself two bottles of his wine. I drank only beer and knew nothing about the vino, but managed to lift two of his rarest years despite myself. He nodded approvingly then chipped in half his ham. Only toward the end did I discover why we got on so well, despite the bluster. It came seeping out. He was Spanish-born, from Barcelona; salty, open-minded, and intensely moral. Family was everything and everything became family. His housekeeper had seen him through the death of his wife. I would watch them playing together. It was sparky and amusing – a brother with his youngest sister. She only got the minimum wage too, but it was under the table. He would send her to Queensland with her grandchildren every year.

“Okay then,” I finally prodded, “why have you never gone back to Spain?” “Franco!” he barked at me, as if it was my fault and had only happened yesterday. His father was a socialist and very active so they were hunted down. The children and their cousins had been scattered throughout the world: Canada, Melbourne, New York, Wainui. So was he the one closest to his dad? An autodidact, meticulous and serious with razor-sharp intelligence and an unforgiving tongue. One morning I watched him examining his slippers. He raised his jowly face in distaste. “Look at the money wasted on this,” he argued. “They make an upper to last six months; the sole 10 years. Whoever designed this, I’d have fired the fucker!”

He never stopped trying to groom me. I never stopped pretending he could.

*

Sel was another. You walked into the house through the library where Thatcher and Reagan bookended a local history of the rebel All Black tour to South Africa. This was going to be hard, but you were only there for the stroke. It had taken out his language, stiffened his right arm and teased away at some vital functions. Arrhythmia of the heart mostly. He could walk okay, but would suddenly turn far too white and you’d have to prop him back in a chair. But it wouldn’t stop him for long. I’d do the lifting in his garden where his tomatoes were a month ahead of ours, though we had the edge on his sweet peas. After a while you stopped noticing the deficits.

He’d put on his hat and gesture toward the car and I’d drive him into town. You’d get sacked if they found you out, but fuck them.

Christmas Eve I took him down to Pak’nSave but his bankcard wouldn’t work. I marched him into the bank, determined to sort them out. “Hello, Mr Quick,” the teller said, floating her breeziest smile right past me before buzzing in the manager. She waited till they were in his office then turned her screen toward me. There were five accounts, only one under $40,000. Then the empty one: he was using the bank’s money and they had started to mind. A couple of weeks later he left a folder out and nodded for me to leaf through. It headlined a statement from his broker. The yearly income alone totalled $50,000 plus. It was all being shovelled into the Quick Library Trust. The money was going to the poorest schools in the district, including the one that had started him off. He had me sussed within an hour. I’m still bewildered.

*

Leni had cancer. It was right through her but you wouldn’t have known. Sometimes it’s like that, returning you to the fullest bloom of health just before the end. She was a farmer’s wife who’d had to turn into the farmer when her husband didn’t return from the war. She already had her children and never remarried; then she’d retired into town and her garden. You would cook tea, shuffle her down for a pee and a wash then get her ready for bed. She’d prop herself up on the La-Z-boy in the lounge with a duvet. The government would only pay for an hour, but it took as long as it took – two hours some nights. My workmates were the same, only more so. Kora was from Sāmoa and would pay a babysitter $15 to mind her kids then get to Leni for $9 minus the petrol. She’d leave her children. She wouldn’t leave Leni.

Then there was an industry crisis. A bloke in another company in another town was accused of untoward behaviour by an elderly woman with about 60% of her neurology still working. She should have been in 24-hour care, but the government was busy saving its taxpayers the $140 a day. It was he who was judged the victim, but the media had its field day and outraged a lot of viewers, and didn’t want to know how it had wrecked his family. So male staff were segregated from the women. But Leni got straight on the phone. She gave them such a scolding. She’d go straight to the newspaper, she told them, unless she got her way. My supervisor Pati sent me back the next day. She was Te Arawa, from Rotorua, and the best supervisor we ever had. She set aside a back room for the workers’ Christmas party, then rang to call it off. We were paying for it ourselves but the managers had found out and threatened her with the sack.

Leni was a good Catholic, and on Sunday a female priest would drop by to minister to her. I didn’t think there were any, but there you go. I was brought up at the opposite end of the doctrinal spectrum then walked away from it all. So the rituals were an intrigue to me – solemn and distant and binding and yet somehow warm-hearted. Perhaps because they were women. It seemed to rekindle her, to return a surer sense of balance. Others could see it too. Her granddaughter would ring. “Nanny, can you say a prayer for me? God doesn’t listen to mine but he always answers yours.” The woman was in real estate and facing a holdout. She needed one more house before turning them all into flats. Leni lost me on that one; still, being a good Catholic, she kept a bottle of whisky under the kitchen bench and fostered a passion for the turf. We’d watch the Melbourne Cup together – she always ran five bucks each way. She had the inside gen on a local horse and cajoled half the neighbourhood into backing it. When it ran home fourth, she was distraught and wanted to refund all their cash.

Then one morning I arrived to find her incoherent and near comatose. I knew exactly what it was – diabetes – so spooned in the antidote: blackberry jelly. She soon revived, but the diabetes was starting to run out of control. There was more going on than that but I tried not to see it, and fetched a pot of honey to place beside her chair. Finally, she agreed to leave the garden she loved. I visited her only once in her new digs at the rest home. She was sitting beside her bed, dressed like next spring, sunny and engaging and absurdly grateful. Somehow, we’d got her through.

*

Kora rang to try and get me to the funeral. “We’ll all be there!” But I prevaricated and prevaricated. When you find yourself avoiding the funerals, it’s time to get out of the job.

Which left me all those dreams to unpick.

Strong Words #2: The best of the Landfall Essay Competition, selected by Emma Neale (Otago University Press, $35) should be available next week; you can preorder from Unity Books Auckland and Wellington




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