Jenny Downham describes finding a little joy amid a heart-breaking situation, and how it helped her realise the value of the small things.
"What brings your wife joy?" the hospice nurse asked my father.
"Nothing," he said. "Her situation is terrible." He got a hanky from his pocket and dabbed his eyes. "We've been together 70 years. It wasn't supposed to end like this."
It was heart-breaking. Mum had been ill for a decade with Alzheimer's and Dad had cared for her at home. But a recent stroke had robbed her of all speech, most movement and her swallow reflex. My dad's own frail health meant moving Mum to a medical setting for end of life care. Dad felt guilty and powerless.
"She likes cold milk," I ventured. It sounded ridiculous. Such a small thing. And anyway, she could only manage a few sips. Was that joy?
The nurse encouraged us to make a list and do our best to implement it. So we brought in favourite objects from home and decorated Mum's room with paintings and family photos. We turned her bed towards the window. She mostly slept and we mostly watched her.
"It isn't enough," Dad said.
He bought a tree, decked it with tinsel and baubles and tucked it in the corner. It was October, but she adored Christmas and her eyes lit up.
Mum was sometimes frightened. Dad was devastated most of the time. The rest of us were distracted and deeply sad. But looking for ways to bring Mum joy engaged us with the fact that she was alive right now and that 'right now' mattered.
"What else?" Dad said, smiling for the first time in days.
My brother made a loop tape of fifties songs. My sister gathered freesias for their scent. I told stories. A friend played guitar. Dad placed souvenirs in Mum's lap and reminded her of holidays they'd shared.
We started looking for happiness, talking about what it meant, recognising it when it came. Mum liked having her hand held and being included in conversations. Just because she appeared to be sleeping didn't mean she wasn't listening. She preferred strawberry milk. She always smiled at Dad's voice, so he sang for her, hesitantly at first, but eventually with gusto.
On occasion, she'd silently lip synch.
There were several emergencies. Mum was sometimes frightened. Dad was devastated most of the time. The rest of us were distracted anddeeply sad. But looking for ways to bring Mum joy engaged us with the fact that she was alive right now and that 'right now' mattered.
When I got home late and exhausted to my children, we’d pile into one bed, spill popcorn on the sheets, forget about homework and cuddle so much our edges got lost.
Everything felt visceral. I began watching the world more closely, enjoying moments more fully.
Over the short weeks that remained and, despite Mum’s body closing down, we found a lot of joy. We gave her a midnight carol concert, played balloon hockey across her bed (she laughed like a drain), nudged secret chocolate into her mouth and brought her a handful of the first December snow.
She rewarded us with smiles. And those smiles taught us the value of small things, of right-now-in-front-of-your-eyes things, of the simple happiness of being in the same room as people you love.
I hope never to forget.
Jenny's book, Unbecoming, is published by David Fickling books and is available from Amazon.
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