Navigating the Crossroads of Palliative Care & Dementia: A Poet's Perspective
NAVIGATING THE CROSSROADS: A PERSPECTIVE IN POETRY
I’m going to read 3 poems for you today. But first, a little context.
We were lucky. Margaret, my Mum, was diagnosed with Alzheimer’s when it was in the early stage so we were able to plan. Having said that, and especially after listening to this morning's speakers, there are things I wish I'd known sooner. Mum lived for nine years with the disease, and died during the pandemic, in January 2022, at the age of 82. Covid travel restrictions meant I hadn’t seen her for six months. And I couldn’t be with her in her final days because I was quarantined, inside this hotel.
I was very close to my Mum. I cared a lot. We lived in different cities (me in Adelaide and her in Perth) but we were in regular contact. Before moving into aged care, Mum lived alone, and if she was worried or upset about something she would phone me; or my brother or sister-in-law, who live in Perth. We were her three key supports.
I learnt to allow half an hour for phone calls. I learnt to talk about one thing at a time so I didn’t confuse or overwhelm her. I learnt to name her emotions for her: ‘You sound worried, Ma. You sound angry, frustrated. You sound sad.' And in this way I could calm her. She would often say: ‘I feel better after talking to you, Caroline.’ And that made me feel good.
But as the disease progressed, things got harder. No matter how well informed I was, how much research and planning I did, all the organising and problem solving, the phone calls, emails, the interstate travel; even my years of experience as a support worker in the disability sector – none of it prepared me for the emotional fallout of witnessing the illness in my mother.
None of it prepared me for how I was going to feel.
The big losses were hard and harrowing – like the first time she didn’t recognise me as her daughter; or having to move into an aged care facility; or how she began speaking mostly in Welsh, a language I loved to hear her speak but could barely understand.
The small losses carried a different kind of weight. To the outsider they might have appeared insignificant, like the cups of tea she drank in the aged care facility – white with one sugar – when I knew she drank her tea weak black; or noticing that 2 of the 4 buttons on her favourite black & white cardigan were missing, and no-one had time to tend to that; or realising that she no longer laughed when humour & laughter were such a big part of who Margaret was.
Aged Care Facility, Penultimate Visit [published in The Banyon Review]
Her plans snag
I interrupt her morning tea
Not sure what to do with
blue-iced pound cake
she wraps it in a thin paper napkin
and offers it to me.
Soon she will wander
with undisclosed purpose,
shed lives like feathers
in the facility’s eternal corridor,
burble the language
of winter rivers.
I’m almost undone
by her new noise and I gossip
too brightly about birds
and weather, hold her
hand too tightly
as if it were a rare seed.
When she leaves the room
I overthink the simplicity
of her closed door.
I work hard to not think
of clouds uncoiling
like rope, of cake
crumbs spilling
on bedsheets
like a host
of poisoned
sparrows.
Mum’s final years of palliative care are, for me, forever tied up with Covid-19, border controls, and absence, particularly an absence of touch. In the last two years of her life I saw her mostly on screen – usually once a week for our allocated 15-minute video calls. Covid and W.A.’s hard border meant I could only travel to Perth a couple of times to be with her. One of those times was in July 2021. I hadn’t been with her for 12 months and as you can imagine, the changes were significant. They took my breath away. This is the second half of a long poem that responds to that experience. (This poem won the Mslexia Poetry Award & Woollhara Digital Poetry Award. You can read the full poem HERE) :
A Poem To My Mother That She Will Never Read
When finally the border re-opens I arrive at dusk.
I hate the locked unit, the nurse’s sterile station. Your life
summarised on a shelf in a lever arch file.
I hate the grey vinyl furniture. Quiet ripe air.
I hate weeping into hospital white sheets.
I watch you sleep with your eyes open.
Shadows congeal in the quiet corners of your room.
Your arms reach for invisible things.
You’re like The Walking Dead except you’re not walking.
I google Finding The Person Inside Dementia I get a theory
of Personal Identity in the tradition of John Locke.
It goes:
A person with advanced dementia is not a person.
I can’t find the sweet or funny in that.
On a bend in the Swan River near the airport on Noongar country
an untidy circle of teenagers drink cider against a backdrop of raven sky.
And black swans sleep on the obsidian river with their heads tucked under a wing.
I play angsty jazz radio into a roar of jets.
I am wet with crazy in my good daughter devotion. I wish
stars into kisses that say yes. Wish kisses
into other kisses that hold their breath like
poets hold truth. Or Not.
Ma – Maybe you’re a single syllable dropped down a well?
A heart shot out of a gun?
A blue shoe worn on the other foot?
Between you and me?
I want us
to be us
without all the rest.
I also want warm socks.
It’s three degrees in this river and my words are making me shiver.
I wish they’d stop aching like sad old teeth.
They never tell you about the aching teeth.
How exhausting it becomes to speak.
The sometimes loveliness of sitting in silence with you.
How grief is aeroplane white with too many empty seats.
My final poem is called ‘Something Strange Is Going On Inside The Sun.’ The central image is one I read about in a science journal: there is, apparently, a hole inside the sun. Scientists don’t know what’s inside the hole, and it’s getting bigger. As I thought about the growing number of people living with dementia I began to imagine people’s lost memories filling that ever-expanding hole inside the sun. I wrote this poem when it dawned on me that Mum’s dementia was no longer mild to moderate. That Margaret had arrived at the late-stage. That we had arrived.
Something Strange Is Going On Inside The Sun (published in SIARAD)
There’s a hole in her centre the size of fifteen hundred Earths
and no-one seems to know what fills that hole
and Margaret, who is that woman in your face?
Something strange is going on inside your face
And the broccoli grows strange in my garden
leaves wider than the sleeves of a Renaissance gown
but the green heads look demented, deformed
devoured by predators with tiny teeth
and Margaret, I too have become strange
I think of death and people dying, all the time
I think of lives lost to dementia, all the time
I hear your memories crack and splinter, shards of people
place and time shot through with foggy darkness
and Margaret, I think your memories are filling the hole in the sun
Here is Bryngwran, the Welsh village you were raised in
Here’s your mother, my grandmother, sewing by the light
of a candle. Your father tends the garden
Your brother calls you in from the stream
where you swim with your twin sister
Here are your people who grow things
Here your people who make things
who sing children out of rain
who sing bones in to earth to lay them down again
in the land of your mothers, the land of your fathers
And that old sun swells with the strangeness
of memories’ broken bones
but I am singing them back
in this poem. And you can call it selfish
but I am singing them back
because I need to remember
who we are in this strangeness
we’ve become
And so I sing …
And I will keep on singing
in sunshine and in rain
and on foggy winter mornings
until you come running like a child
through the fog
to her mother’s open arms,
Ecstatic to be found at last.
*
Thanks for reading. If you'd like to stay in touch, subscribe to my sporadic Newsletter HERE; or visit my Online Shop HERE. You can also Donate a virtual coffee HERE.
much love, Caroline x
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