Inspired by the late Hazel Hawke’s battle with Alzheimer’s, The Weekly’s Susan Horsburgh reveals the agony of her own father’s slow decline.
When I was a kid, Dad was some kind of demigod to me. He’d come home from work, drop his briefcase and give me long cuddles in the kitchen — and instantly it felt like everything was right with the world.
If Mum was the heart of our family, then Dad was the anchor: strong, calm and constant. I remember looking at him as a little girl and loving him so much I thought I’d burst.
An unwavering example of humility and integrity, Dad was a pharmacist who was never happier than when he was in his dispensary, a low-maintenance man whose favourite meal was baked beans and bacon.
Heaven for him was an hour lost in a hardware store. His favourite book was The Power of Positive Thinking and if my four older brothers or I ever came to him with a concern, he could always calm us with some words of wisdom.
His motto was “Life wasn’t meant to be easy” and, in the past, I’ve pooh-poohed that philosophy as somehow Presbyterian and joyless. Now, though, I see it differently — as more a stoic acceptance of the hand you’re dealt.
Dad has never expected a free ride and, when things haven’t gone his way, he has never complained — even six years ago, when he was diagnosed with Alzheimer’s disease. He knew what was ahead of him, and yet the grace and courage he showed were heroic.
He was 68 then, but the warning signs had been accumulating for a couple of years. In his speech at my 2005 wedding, for example, he told the same story twice in the space of three minutes. In some ways, the eventual diagnosis felt almost like a formality, but that’s when the grieving began.
Not all my brothers have found it as difficult as I have — maybe they’ve absorbed more of Dad’s positive thinking — but, to me, Alzheimer’s seems like death by a thousand cuts; nothing diminishes a person quite like it.
The disease has not only robbed Dad of his memories, it has warped the way he thinks and the way he acts. It’s so stealthy, it’s muddled my memories, too, making me wonder when my dad ended and the disease began.
I once read a quote: “Memory is a way of holding onto the things you love, the things you are, the things you never want to lose.”
As your memories evaporate, I imagine it’s like feeling the foundations of your life erode from under you.
At first, Dad was sceptical that he even had Alzheimer’s, then he thought he’d beat it, and then — as the reality sank in — he just didn’t mention it anymore.
A workaholic who’d been forced to retire, Dad didn’t know what to do with himself all day. He’d bought his first computer in the 1970s and now he couldn’t even navigate the internet.
Once a keen home handyman, he couldn’t assemble an IKEA desk. Eventually, he stopped reading books because he couldn’t follow a storyline.
Dad adored my first child, but by the time my third came along, he’d forgotten who she was.
When I was in labour, I called Dad between contractions to sing him Happy Birthday, knowing that he and my almost-born baby would share that special day, but he didn’t seem to grasp what giving birth meant.
A few weeks later, we visited my parents in Brisbane. “Who’s that little boy?” he’d ask, as I put my newborn daughter to bed — and then he’d appear 20 minutes later holding my freshly awoken and wailing baby, having found the tiny sleeping stranger in the spare room.
Beyond the memory loss, it’s the personality and behavioural changes that have broken my heart — and tested my patience. In the media, the typical Alzheimer’s story tends to feature a saintly spouse who happily cares for their often cantankerous, incontinent partner for years without complaint.
I don’t think that that portrayal is fair on the carers struggling just to get through each day. As Dad’s Alzheimer’s took hold, it didn’t matter how many times I told myself it was a degenerative brain disease, the repetitive, illogical behaviour could be exhausting.
Try driving with someone who recites the words of every street sign and billboard you pass, or finding someone dressed for work and eating cereal at 11pm, convinced it’s morning and refusing to go to bed.
Try answering the question, “What are we doing?” every 10 minutes — for hours on end.
Alzheimer’s isn’t just forgetting your shopping list; it’s being handed a phone and not knowing what it’s for.
Dad once held up a crossword puzzle half-finished in his own handwriting and asked, “Who did this?” When he could still walk, he’d studiously step on all the footpath cracks like a superstitious child.
I’m not proud of it, but in the early years, I desperately missed my smart, sweet dad and sometimes resented the detached, insensitive stranger who’d taken his place. And I was only visiting from interstate every couple of months.
Of course, it was much worse for Mum. Nine months after Dad’s diagnosis, she was told she had bowel cancer and almost died from post-operative complications.
For the next year, Mum endured chemo while caring for Dad, her husband unaware of — and apparently unmoved by — her illness. Her devoted husband had all but disappeared.
Later, he started wandering. He walked out of the house late one afternoon and was lost all night during a violent Brisbane thunderstorm, my family scouring the streets, my mother beside herself — until he was found at daybreak sheltering near a timberyard and the police brought him home.
What was that like for my father as the lightning struck, not knowing where he was or how he got there? It was too awful to imagine.
By the time Dad went into care last year, Mum was physically and emotionally spent. Unlike many with Alzheimer’s, Dad was never aggressive, but he was a big man whose body was failing him, and Mum bore the bruises of trying to wrangle him into the bath.
Although Mum was stricken with guilt, the move freed her from the drudgery of his care and let them enjoy their time together.
These days, Dad can’t name his wife of 52 years, but he knows she is someone special; he lights up when she walks into the room.
Every day, Mum sweeps in like a whirling domestic dervish, feeding him lunch, shaving his whiskers or replenishing his fridge with Violet Crumbles — and Dad’s eyes never leave her.
I remember one visit last year when he held Mum’s hand to his chest, his eyes filling with tears. I’d never seen such tenderness between them.
“It’s like it was when we first met,” Mum said. After those five fraught years caring for him at home, Mum had a new appreciation of her husband.
Alzheimer’s has brought such deep, complicated sadness to my family, yet to only describe the damage this disease has wrought does not do my dad justice.
Alan Horsburgh is more than the sum of his symptoms — and occasionally my warm, gentle father fights his way to the surface. He doesn’t say much anymore and, if he does, it often doesn’t make sense, but he still loves physical affection.
Just a few weeks ago, as we went for a walk around the nursing home, I put my arms around him as he sat in his wheelchair and pressed my cheek against his.
Out of nowhere, he whispered, “You’re my favourite little girl” — and, for that fleeting moment, I felt I was. My dad had come home again and everything was right with the world.
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