‘Death at home
My mother died at home, surrounded by family. We read her Lauris Edmond and Hone Tuwhare and she seemed soothed. Then she took off her oxygen tubing, removed her hearing aids, and demanded tea in a cup.
‘I’m not having any more tea on one of those mouth sponges,’ she said.
At the first sip of tea, she coughed and gasped and heaved. Desperate, she propelled herself off the bed, knocking the chair sideways. As she fell I managed to catch her flailing body, and as I held her she whispered, ‘I’m done. Just lie me down flat in a comfy bed like you promised.’
The promise of comfort, the promise of palliative care. But death, like birth, is hard, dirty, messy. I felt bad about the evenings of agitation my mum had suffered. She hadn’t been soothed by the morphine liquid, clonazepam drops and midazolam spray; she just got more disorientated, and I got more distressed.
Maybe death has to be this way, gruelling and unbearable, because at some point we have to let go. To know we are done.
We were lucky. We had had one meeting with a lovely palliative care physician, who had changed Mum’s life by reassuring her about her death. Palliative care nurse specialists visited weekly; they were practical and kind and engaged. A district nurse visited daily to change syringe drivers and draw up extra doses of drugs for us to give her overnight.
But that night, at 11 p.m., when I lay my mother flat on the bed, there was no one.
I had the number for an on-call district nurse but when I had rung a few nights earlier she had taken 30 minutes to get back to me. She also didn’t seem to know my mum or have easy access to her notes.
I had a cell phone number for a GP I had never spoken to, who was covering my mum’s GP, who was away. It wasn’t clear whether he had agreed to be called at nearly midnight.
I knew her lungs would start to fill with fluid when we laid her down flat. Things were happening fast. I didn’t have time to think about who to ring or where their numbers were, and I couldn’t manage their middle-of-the-night sensibilities.
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I didn’t want to be managing my own mother’s death, waking my siblings, telling them to come, deciding when to give the doses of morphine and midazolam. We had been left with five syringes of each. I did not want to be the one explaining to my family what was happening, what might happen next, what the medications were for, what the grunting was, what the quietening of her breath meant, how we would know.
I did not want to be watching on as my siblings wept and laughed and sang, drinking whiskey and tea while I was thinking, looking for signs of agitation, recording the medications, speaking softly into my mother’s ear, making sure everyone had a chance to hold her hand, supporting those who had never seen death, and holding her pulse through her last halting gasps of life, and finally, after a moment of silence, declaring her dead.
I did not want to be thinking about what we would do now, who to tell, how long to pause before laying out her body, turning off the heating, removing her catheter, making sure sharps were disposed of and planning when to ring people.
I wanted to be a daughter at the death of her mother. But I was a doctor at the death of her mother. Exhausted and harrowed though I was, I did it and I did it well.
And looking back, perhaps if an unknown professional had entered into that dimly lit family scene, it wouldn’t have been right.
And maybe my mother could let go, let herself be lain flat, because I was there.
An amazing thing happens when a doctor turns and faces you
I witnessed an amazing thing recently while observing a first consultation between a neurologist and a young man with epilepsy. She faced him, giving her full attention, gathering his story, clarifying and carefully considering. I watched her artfully engage with him while simultaneously weighing up complex clinical considerations.
A quiet female medical student was also in the room watching this transaction. The young man put on a good show, as patients do for the doctor, as if saying, ‘Even though my life is a mess, I can still muster something for this event, because it matters.’
His life was a mess in a way. He had been a highly articulate schoolboy debater, then a political student journalist, but he had developed epilepsy in his second year at university. Although it was not explicitly said, it was clear to the neurologist that he was good at taking his medication, looked after his sleep and had given up partying. Although his mind had clearly once been the mainstay of his identity, he was pragmatic about his new reality.
The medical student looked on intently as the young man described how he had been well controlled for two years, but last August his seizures had mysteriously returned. Initially there were seizures weekly but despite that he had managed to finish his law degree by Christmas. He had been on a sickness benefit since his graduation.
The neurologist praised him for keeping a seizure diary in an app on his phone. It was a minimalist visual record of the explosions in his head that leave his mind so shattered that he now often leaves sentences unfinished or is unable to retrieve the precise word to express the nuance of his opinion.
The medical student’s brow crimped slightly when he explained, somewhat objectively, as if he was a doctor reporting on himself, that due to the medication’s side effects he had gained 20 kilograms and developed a hand tremor.
The neurologist took in the said and the unsaid. You could feel her mind intent on the task of assessing, analysing and planning. It was when she said that things were maybe getting better as there had been a month between the last two seizures, and therefore maybe the best thing was to stay on the same drugs for a bit longer; it was in that moment I knew I was going to cry.
I am that 24-year-old’s mum.
I’m not sure what I said but it was something like, ‘It’s so painful waiting.’ It’s been a very slow process as each seizure brings a slight increase in dose, first of the levetiracetam and then months later, when that didn’t work, a new drug: valproate. He was now on the maximum dose of both, but there had been another seizure the day before. Before we knew it, 15 months had passed, months when he should have been launching into his life, full of energy and ideas and invincibility.
I did cry, and the neurologist turned and faced me, and I felt the medical student lean in, gently. People have asked me what the neurologist said but I truly have no idea. I’m not even sure she spoke. I recall she handed me some tissues. I do know that I had a complete sense of her kind, steady acknowledgement, her knowing exactly how long to let the tears roll, and then her instinctively knowing how and when to gently move me towards the next steps.
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I recall feeling OK that I was crying, that tears needed to be shed in the telling of this story, and even though my son now had his arm around me, supporting me, it was somehow right to show that a case of a 24-year-old epileptic comes with its own pain.
I wanted the medical student to know it is complicated, that it is sad to see my son in this situation, but that at the same time I am so proud of him, so proud of him for getting up each morning, for walking towards the big questions of life: Who am I, what really matters to me, how can I make my life, as it is now, a good life?
And I wanted to tell them about the good things, how much it helps when a stranger enters the story and says, ‘Yes, I’ll give this young man a break. He can help me with writing or research, just two hours a day.’ And I wanted to tell them about the flatmates who in their loving, accepting and laughing way have taught me something about the care of the collective, of whānau.
My oldest son and I walked out of the hospital, arms looped together, feeling lighter, knowing we had a plan, knowing someone had listened and lessened the weight of it. That’s the way it should be when you leave the doctor; you want to feel a little lighter, more hopeful.
It is incredible what can happen when a doctor turns and faces you.
Matemate-ā-one
A few years before Covid, when I was still gallivanting around the world as if the meaning of life was to be found somewhere else, I wrote about the best part of travel, returning home.
Home.
I love that moment navigating some vaguely hostile airport halfway around the globe when I get to my gate and see the koru. And I know at the plane door I will be greeted with a hearty ‘Kia ora’ by a bloke with enormous hands and a sense of fun.
And after a nasty egg omelette I will arrive early over the craggy hills of my country on the fringes of the earth, safely do a dawn walk along a green line across an airport and smell damp earth.
Home.
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I am with a group at a noho marae, meandering around whakapapa, colonisation, belonging and home. The other manuhiri with me are Pākehā, tauiwi immigrants and urban Māori impacted by migration from ancestral whenua. I am reminded that belonging involves longing. Longing for home, for land, for connection: matemate-ā-one.
It’s the same feeling I had recently, flying along Kā Tiritiri o te Moana the Southern Alps towards Central Otago, where I lived for 20 years. I was coming home.
Our attachment to place can be primal.
Hāwea Flat is a small rural settlement with a school, a hall and a church. To get there you take a side road off the tourist trail. When I return on a hot afternoon, a broad winged kāhu is drifting on the thermals above the clothesline. At dusk the belly of Kahuitamariki Grandview Mountain glows. At night, the Milky Way drapes over us. It is so quiet. Home.
We are staying in the family home I built with the father of my kids. I lived here for so long I understand the choreography of the kitchen and can remember when the native garden outside was barren paddock grass. Next door is the house on the hill where I lived with my new partner. Both home.
We all take a trip up to Kidds Bush, travelling along the edge of Lake Hāwea. We pass the Neck; before the lake was raised in the 1960s it was known as Manuhaea lagoon, a kāinga mahinga kai or traditional food-gathering site. I only just learned this, even though I have driven this road many times: as a child on family holidays, with my own children, on the night my brother was drowned. I have biked this road, taken babies for walks in backpacks, piled kids into cars for camps. But now, to be back in the bush, the mountain beech red-laced with native mistletoe, the birdsong, and from that ridge above the bushline, looking back along the length of the lake. That blue. Home.
There is a sense of the land in me, as much as me in the land.
I am now living in the North Island, a great adventure, but I have this disconnected feeling; I am in a land that is not in me.
After our walk we swim in the mighty Mata-Au Clutha River, floating along in the chilling clarity of it.
Today we walked up the Matukituki valley, where my younger son is working on the Aspiring Hut renovation. I first went to this hut as a six-year-old in Bata Bullets that blistered my feet. My mother consoled me with Chesdale cheese triangles wrapped in foil and Sunshine rice risotto for dinner. Half a century later Tititea Mount Aspiring still towers over us.
An English friend once took a Sunday drive up the Matukituki Valley’s long gravel road to the start of the Aspiring track. ‘I can’t believe you can drive fifty kilometres and end up nowhere,’ he said. I guess it depends how you define somewhere.
Home is a kind of somewhere. A somewhere that we long for.
I am back at the noho marae wondering about pepeha, colonisation, migration, belonging and home.
Ko Tititea te maunga, ko Mata-Au te awa, ko Hāwea te roto.’
