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The Iceberg Perspective - Julie's carer story

For some of us in the Mobilise Community, writing has become a way to look after our own wellbeing. From creative writing to journalling it can be a precious moment of focusing on something we enjoy. Julie, caring for her husband Ray with Alzheimers, has taken things a step further and is writing a book, "The A Word". She kindly agreed to share an excerpt with us.

The Iceberg Perspective

Saturday morning arrives cloudy and damp. Following recent inclement conditions, I am pleased to note my mood is a little brighter. Preparing breakfast with my husband, Ray, we lark around, dancing around each other and loudly singing along to a favourite song on the radio for a vital minute or two.

In the difficult days since Ray's diagnosis with dementia, it has become difficult, yet exquisitely essential, to seize these moments of spontaneity. True, there have been days when it has taken immense effort to splash on a smile and snatch back a little happiness and days when everything was just too much; still we keep trying.

Osteoarthritis was already making its painful presence felt, when I took early retirement in 2017. After a long career in health and social care, I looked forward to having more time for my writing.

A year or so into retirement, I was adapting to the change and making headway with a book I was trying to finish but, niggling concerns about Ray’s cognition had formed into something I was reluctant to articulate but could no longer ignore.

And so, the year-long journey from suspicion to confirmation began. In November 2019, Ray and I sat in a room to hear the words we had so dreaded, Dementia. Alzheimer’s.

"Ray, like the proverbial iceberg, still has much more of him lying beneath what is visible on the surface."

I have found acquaintance with Alzheimer’s from this side of the fence very different, intolerable, inescapable and far too intimate. I found myself a reluctant enrolee on an unscheduled, crash-course in coping with a dementia diagnosis.

Since then, painful filtration of thought, balancing what I have to consider against what I can comfortably cope with, has led me to try and neutralise the thought load. When Ray’s ability to hold a conversation became an early casualty of dementia, I took painful stock. It was difficult to see him struggle.

He knew what he wanted to say but often failed to get the right words out before they slipped away. Given he loves to chat and tell (awful) jokes this was, and still is, heart-breaking.

Yet, as he once said, he is still him on the inside, with the same thoughts and feelings. Thinking about this one day I realised, Ray, like the proverbial iceberg, still has much more of him lying beneath what is visible on the surface.

There are, I am intensely reminded, so many non-verbal ways to interact and enjoy someone’s company, affection, kindness, expression, touch, shared activities, dancing and singing. I can’t help smiling whenever I hear Ray belting out, word perfect, his favourite rock songs. When words snag, music, humour, affection, laughter and sometimes tears flow easily.

Picture Credit: Alexander Hafemann (Unsplash)

It’s not always possible to be cheerful, in the face of adversity. Covid-19 has made this a particularly difficult time to be assigned the dual role of scared-spouse and full-time carer. With sources of practical, tangible, support on hold indefinitely the landscape seems unbearably bleak at times. Within this barren ‘care’ bubble, I have had to claw my way back up from what felt like a pit of despair.

There are still good days and not-so-good days and days ahead I still try not to think about but I hold on a bit better now. If I had to drill down to one thing I have found most helpful in all of this it is, without hesitation, a sense of humour.

This was and still is, something that both Ray and I share. I can think of so many moments we’ve gone from bemoaning something or other to convulsing into laughter at the absurdities of life.

On a day when I was already feeling particularly raw, when any incautious remark or seemingly small setback takes on razor-blade levels of abrasion, things were not progressing well. Several attempts at ‘cheering-up’ the day had not gone as planned and my face was intermittently fixed in a teeth-grinding cheery smile, or beset with cascading tears, I couldn’t wipe away fast enough.

Following a walk around the park, Ray and I sat on a park bench and considered the flotsam and jetsam of the day’s events. Noticing I hadn’t got my new fitness-band on my wrist, I remarked to Ray what a shame it was as the extended walk may well have resulted in me actually hitting the 5,000 step goal I was trying to achieve.

It seemed the day just wasn’t going to right itself. That evening Ray and I got separated in Wimbledon, leaving me stranded near a busy junction, at the tail end of rush hour.

Not best known for my geographic knowledge, I was trying to direct a man with limited comprehension around an unfamiliar, hectic part of London. With attempts at bridging the gap between us with technology having to be aborted, I realised there was no other option than for me to trudge my weary way to Ray.

Unsuitably attired in slippers and incongruous clothing, my walking stick was, I now remembered, still lying, entirely useless, in the car. In my favour, I had, some weeks ago, downloaded an App called Find My Phone onto both our phones, which helpfully provided the precise location of the user, via GPS.

Thank goodness I did, otherwise, I think I would have had to involve the police, explaining Ray had dementia and was sitting parked in our car, lost and alone, somewhere in the maze of streets around Wimbledon tube station. Having tapped his location into Google Maps, for direction, I set off, limping my slippered way around the indifferent streets of Wimbledon.

Becoming more upset and annoyed with every step, I tried very hard to remember this wasn’t Ray's fault but this train of thought left me no avenue for the growing distress and annoyance I felt.

Trudging painfully along, it suddenly occurred to me I had stumbled onto a dimly lit, housing estate, in an area that forced me to rapidly consider my safety. With volatile emotions ready to erupt and still, wielding a grocery bag with heavy lemonade bottles in it, I furiously concluded it would be one sorry mugger that attempted to mug me that night.

With a hefty swing of my bag, I’d unleash on them the full incendiary force of my feelings. Smiling at this image, I made my way to the road my sat nav told me Ray was parked on. Safely back in the car, I was assailed with a range of emotions, relief, sorrow, frustration, anger, all burst out in an incoherent chorus of recrimination and sobs. Ray reached over to hug me,

"I’m sorry,"

He said,

"It’s not your fault."

I manage between deep breaths

"It’s not you,"
"It’s this f***ing disease,"
"I hate it!"

As the mist settles, I squeeze out a smile.

"I found you though, didn’t I?"

I finally said.

"Go on, admit it, you’re impressed."
"I am actually"

he smiles back.

With the erstwhile navigator now back in the situation we can head home for a late dinner.

As Ray turns the key in the ignition a thought suddenly springs to mind,

"I bet I’ll have well exceeded that bloody step-count by now."

I say and we both laugh out loud.


Steven Dewar
Steven Dewar

Superbly written, heartfelt , emotional, funny and brimming with love and kindness, a testament to both of your spirits, thank you for sharing your story and wishing you both well for this new year xx

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