Tuesday 25 October 2016

'Little by little, piece by piece, the very essence of my dad dispersed': Katie Byrne on her late father's battle with dementia

Published 28/08/2016 | 02:30

Features writer Katie Byrne
Features writer Katie Byrne

I started talking about my dad in the past tense long before he left us.

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It wasn't a conscious decision. It just happened that one day I used the word 'was' when describing him to someone and, somehow, it felt strangely appropriate.

My dad started showing the first signs of dementia when I was 16. Maybe I was younger. Or maybe I was older. I can't remember.

Dementia, I've since realised, is a memory disorder that affects the entire family. The recipient forgets because their brain cells are dying; their loved ones forget because the finer details are just too horrific to recall.

Dementia patients no longer experience time as linear - as least that's my interpretation of it. Past, present and future overlap in a hallucinatory fugue, while the mechanisms that allow us to differentiate between night and day, then and now, slowly dissolve.

Sometimes they believe that their deceased parents are still alive. Sometimes they go wandering in the middle of the night, but unlike the sleepwalker, they never wake up.

The family of the person with dementia also experiences time differently. Initially, they can't deal with the present out of fear for the future. So they deny and defend and deflect.

There was only pensive silence in the room when my dad started having difficulty recalling the word for "the… the… the thing with the buttons!"

We all knew what this meant, but to say it out loud was to make it real.

He was eventually diagnosed with 'frontal lobe' dementia - a form of dementia that causes, among other things, distinct personality changes.

The most startling change was his sense of humour which, in better times, was deliciously off-beat and smart as a whip. The illness made his jokes puerile and two-dimensional.

Little by little, piece by piece, the very essence of my dad dispersed. It was like watching the filaments of a dandelion being taken by the breeze.

The filaments were still out there, somewhere, dancing in the ether, but sitting on the couch was a vacant-eyed, catatonic shell.

And still we tried to pull him back from the abyss, vying for a laugh or a smile or even just a semblance of connection. "Who's your favourite jockey, Dad? Dad? Dad!"

The family of a person with dementia doesn't live. They wait.

It's a prolonged demise that happens so incrementally you can hardly believe it's happening at all; a drift so gradual that you can easily forget you're losing your loved one for good.

Our dog was run over in the early days of my Dad's illness. When the vet told me he was dead, I fell to the ground and wept.

We mourned that dog for months, with a veneration that bordered on hysterical. He was buried in a pet cemetery with a tombstone - yes, a tombstone - bearing an overblown inscription that still makes me blush. It was only in later years that I realised we weren't mourning the dog - who, frankly, was a bit of an asshole. We were mourning my Dad.

There are no definitive endings with dementia, just one door closing after another. Your loved one is here in body but not in spirit; here but not there at all.

People often asked, "Does he still know you?" as though this was the official point of departure. Yet long before this closing chapter comes the point when you no longer know them.

The decision to move a person with dementia into a care home is another goodbye. And another one, and another one... Walking out the door with an empty styrofoam cup in my hand and my dad's dejected gaze on my back never got any easier.

"I'll be getting out of here tomorrow," he used to assure me. My dad still knew who I was, but he thought I was still in school. How sweet that he wanted to comfort his little girl.

Native American Indians believed that people with dementia have one foot in this world and one in the other. This makes sense to me - even if the condition itself makes no sense at all.

And yet, even when his time came to leave this world for the other - this time with a coffin and a death certificate - it didn't really feel like the end. There were so many goodbyes to this profoundly cruel condition that I couldn't quite believe this was the last one.

When you grieve the loss of someone you lost a long time ago, you begin to wonder if you ever really grieved at all.

The Alzheimer National Helpline is open six days a week; Monday to Friday, 9am to 5pm and Saturday, 10am to 4pm. Call 1800 341 341 or email helpline@alzheimer.ie

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