Thank you for printing this moving piece. My mum feels so guilty that she can no longer look after my 91 year old dad at home and he is now in a hospital in a single room, almost totally bed ridden and presumably must spend long periods by himself. The hospital have put a small hi-if in his room so he can listen to the radio, which I thought was a nice touch. Mum won't let anyone visit him and she can only visit every 2 or 3 weeks as he is 20+ miles away and she can't drive. He is obviously unhappy that he is so far from his home of over 60 years and was so pleased when I took mum to see him a few days before Christmas. I sat and stroked his arm and showed him family photos on my iPad so I could make them bigger. Since being away his glasses, hearing aids and false teeth have vanished, so I'm not sure how much he could hear or see but he responded several times. It was hard to understand what he was trying to say, but I managed and kept stroking his arm. In the summer we took several family photos and put them up in his room, but someone took them down. Mum has taken a few ornaments and a small vase of silk flowers for his window cill, but his bed doesn't face the window, There is no solution, no happy ending - just a lot of sadness at the moment. I will send Jenny's story to Mum (I'm even further away than Dad is!) and maybe we can try to bring him a little happiness in his last few months using some of Jenny's ideas. Thank you.
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The value of 'right now'
Jenny Downham describes finding a little joy amid a heart-breaking situation, and how it helped her realise the value of the small things.
Jenny Downham
"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.
By Jenny Downham
Twitter: @DFB_storyhouse
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