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The right-to-die debate as viewed from a rest home

A select committee review into assisted dying is coming up, and all signs point to a foregone conclusion. Former caregiver Talia Marshall recalls her time working in a rest home, where the debate has a very different meaning.

I remember trying to a watch a VHS copy of Anne of Green Gables with my grandparents in my grandad’s second to last room. His catheter bag went drip drip drip and Nana attended to it with the fanaticism particular to retired nurses.

Anne was a TV series we had first watched together in between The Lotto. It was 1987 then. I thought grey and pink looked good together. I also thought my grandparents were the two most wonderful people in the world, my own kindred spirits. I could not tell that Marilla was going to soften towards Ann with an e because of their constant benevolence. I did not know that Lucy Maud Montgomery ended up killing herself.

Glendhu Bay, Wanaka. 13 April, 2013. Photo: Talia Marshall.

Glendhu Bay, Wanaka. 13 April, 2013. Photo: Talia Marshall.

In 2009 I was working as a laundress in the rest home that housed the room my grandad was slowly dying in. This was my first ever proper job. I was 30. I took great self-punishing heart in the term laundress. I listened to the Nutters Club while I waited for the tea towels to dry and wondered if Mike King would be as fun now he was off the waste. After I got home I read a novel a night so I could leave my body and keep up with Kim Hill.

While we watched Anne win the Avery I had the strong sensation that my life had gone terribly wrong. I viewed my grandad’s greater tragedy as being proof of my doom. Good memories were being replaced with terminal adult experiences. Comparatively, Matthew’s death seemed brief and sweet. We’re all going to die, I thought, but I am always thinking that.

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Before I started working there and was just a visiting civilian I didn’t notice much about the people being paid to look after my grandfather. I turned up during happy hour once and cried through it. I do remember a resident who was trapped inside her angora jersey, and one of the girls helping her. Everyone that worked there was called a girl, whatever their age, except the one or two men who chose caregiving and were often viewed with quizzical suspicion by the girls.

The girls were made up of multiple Tinas and Pams. One would be small, one would be big and called as much to her face. And then there were the Indians. This is what they were called by the Tinas and Pams. The Indians (and Filipinos) are the people who we’ve imported to appease our anxieties about the baby boomers’ impending health crisis. We use and abuse those workers terribly; I find it interesting that so many of them want to live and raise their children here given the racist way we exploit their cultural capital.

Many of these migrants were qualified nurses back home, with operating room experience. This did not mean that they automatically knew how to make a bed or transfer an awake person from a chair to a commode. This used to be the bread and butter of nursing – stacking a linen cupboard, practicing hospital corners on sheets and intuitive comfort work with pillows. Imposing order on the chaos of illness. Increasingly, registered nurses spend their time behind medication trolleys dispensing the pharmacological restraints and whims of doctors who don’t necessarily know their patients in the holistic sense at all.

I find it curious that one of Andrew Little’s first moves as Labour leader was to scrap Maryan Street’s euthanasia bill. The suggestion was that Labour ought to be seen less as a social issues party than as a credible political force focused on jobs. But employment is a social issue, and it seems to me that the aged care industry is a microcosm of how our social and economic policies are failing us on multiple levels.

Because this is palliative work, it also intersects with issues of informed consent in relation to death and living. If Street’s bill had been introduced years ago, at least the debate around euthanasia and how we care for the dying would have had some oxygen. People in their 50s are right to be frightened about what is going to happen to them when they get old. Many will be watching their own parents become subject to the protracted torture that is institutional life for the elderly, of rotting into a Lazyboy with Hayley Westenra on loop.

Crying Through Happy Hour2

I remember another woman across the corridor from Grandad who I ended up caregiving for after I left the laundry. She had been institutionalised for most of her life and had no family in the city. She had almost no words left, was blind and had a wasting body that was as easy to change as a rag doll.

This was lucky because she had daily bouts of explosive diarrhoea that often required an entire bed change. A nurse mentioned at handover that she was lactose intolerant, which given the amount of thickened milky drinks she was given by the Tinas and Pams would have explained the gastric distress. Imagine if you had no words, could not reach your own cup, and someone was feeding you Milo with flour in it.

Despite what the nurse said, we still fed her Milo. She’d been moved out of her okay room to another, colder one because a resident with a concerned family member had requested sun. So the woman had been shifted to the dark side of the corridor. If we were short staffed, the woman would not be hoisted into her giant pram and be taken out to the communal battlefield of the lounge. She’d stay in bed all day without even the light on her skin. If she was lucky, after one of the Pams or Tinas had changed her sodden shitty “product” they would remember to put the radio on. We were almost always short staffed.

The woman once had an unexplained black eye. Because most of the staff babied and genuinely cared for her there was a bit of gossip about who would be sick enough to hurt her. The woman contributed to this rumour by reportedly muttering, “she hit me”. An unfortunate consequence of the necessary Privacy Act is the lack of knowledge we have about what goes on behind closed doors.

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I’ve had enough of this work now. The pay is terrible, bullying is endemic, and when you tell people what you do they get a glazed look and inevitably say it takes a special kind of person to do that job. No it doesn’t, it takes all of us.

It’s the one of the worst paid jobs available to mostly women and vulnerable migrants. At the moment we pay people to do this important mahi at the same rate as those handling blocks of butter on a conveyor belt. That is important work too, but caregiving should never be automated like the self-serve kiosks in supermarkets. I broke a finger once and couldn’t work for seven weeks.

There are some people that I have had the privilege to look after who I will always love and remember, and there are others that I wished would just hurry up and die, who I treated with indifferent hands in my haste to be done with them. In between that spectrum were the reserves of patience and kindness I didn’t know I had, that informed my professional practice as a Tina and a Pam.

But those reserves were already running low after five years and now I’d rather think and write about this work than deal with actual shit.

This is nothing to do with the people I looked after; it’s a response to the unjust structures that exist for both workers and residents in aged care facilities. I remember another man who was dying and spent weeks calling out “no, no, no” as his bed sores and cancer slowly drove him out of his head but not his body.

Ironically it was the protracted nature of his demise that disqualified him from being transferred to a hospice and the genuine five-star palliative care they manage to provide for short periods of time.

I was going through the box of sympathy cards for my grandad after he died and there were two that remain with me. One was a generic card from the Labour Party thanking him for his life-long support and another was from a woman who remembered him as a 12 year old carrying her home up Canongate in Dunedin after she fell off the Mackintosh Caley Phoenix building in MacLaggan St.

Finally a memory to replace the Larkinesque horror of adult experience, those times I saw him spit out antibiotics prescribed for UTIs or pneumonia because they were only extending his bed-ridden despair. These life prolonging measures were agreed to by my nana. She loved him too much to let him go to the heaven she so stridently believes in. I wonder if it’s not so much the right to life that religious people cling to, but the desire to keep degenerating bodies alive forever. In doing so we’re fiddling around the edges of the abyss.

Crying Through Happy Hour3

What does happen when we die? I sit on the metaphysical fence in regards to that bottomless and mysterious question, though it is my go-to conversation opener at parties when I’m not hiding in the bathroom. Crying through happy hour again! But even more perversely: the longer we live, the more frightening death has become.

Because the afterlife is not the important reality at the heart of this problem, it’s how we care for people while they are living that counts. And religious organisations have been doing this mahi for us for years. It’s not really fair to write their theologically based attentiveness off as hocus-pocus as Gareth Morgan did a few days ago on this website.

One of the things I used to specialise in was small pampering acts for residents that made me feel worthy. I was giving a man a foot bath once to soothe his aging scaly feet and he sighed and he said, “Why don’t you just take me out the back and shoot me?” He was partly joking, I guess, knowing that this level of clinical humanity is only applied compassionately to animals.

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The day my grandad died I started working in another Catholic rest home. I was entranced by the notion of being a little sister of the poor, but many of the residents there were actually quite rich and benefited from the mission statement handed down by the French nun Jeanne Jugan, who first carried a vulnerable old woman home on her back.

What they did do spectacularly well at Little Sisters was palliative care: special pillowcases embroidered with flowers, endless tea trolleys filled with scones, cakes and sandwiches to fuel whanau’s duty and love-bound vigils, nuns burning candles in rooms while they sat with people who had no family at all. The whakawhanaungatanga we assume only Māori are capable of.

But the nuns and the workers they paid badly were incapable of dealing with the slow demise that can take weeks, months and years – the process that constitutes many of the non-lives housed within rest homes.

Instead of thinking about jobs, jobs, jobs, like Andrew Little says – let’s talk about what kind of job, and how to carry each other out of this place with the grace and kindness of a 12 year old boy with a broken wing in his hand.

My lovely grandfather, who I now like to imagine living in the great white tent of the sky, laughing with the many Māoris from the Church he loved like his own. They are there with him too, singing the lullabies of icebergs.

My Matthew, in the short sleeves of summer and his favourite roman sandals, released.

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