Growing Up With Dementia
This article was originally written and published on Mamamia.
On a 7.30am flight from Melbourne to Sydney on Sunday, I was snuggled up against the window, catching up on the latest (and last, which is devastating) season of Orange is the New Black and I suddenly found myself feeling a sense of dread.
A knot had formed in my stomach.
What was that? Why was I feeling sick?
To cut a long story short (and possibly spoil one of the storylines for you), our favourite feisty kitchen hand and Russian inmate, Red, had been demonstrating some peculiar behaviour this season.
Red, the prison matriarch, was suddenly losing her train of thought. Forgetting simple tasks she had previously been able to do with her eyes closed. Experiencing out of character mood swings and finding herself lost, forgetting where she was or where she was supposed to be.
This felt familiar. I knew where this story line was heading. I’d seen it before.
Except it wasn’t a fictional character on a binge-worthy Netflix series.
It was my own mum. And I was 14 years old.
My mother Kay was a force to be reckoned with.
She was brilliant, driven, funny, warm, thoughtful and passionate. She lit up a room and was one of the hardest workers I’ve ever known. She was the original girl boss. Starting out as a secretary in an advertising agency and working her way up the ranks to a senior member at Gough Waterhouse, a high profile creative agency in the 80s.
She would work long days and nights, (sometimes not having enough time to plait my hair for school in the mornings) only to throw the most extravagant dinner parties on the weekends.
She had the doting husband, three kids and the heritage-listed house with a sweeping front lawn and wrap-around veranda. Some might say that she had it all.
So when she began to lose her mind, everybody, myself included, put it down to stress.
To being overworked. Tired.
It began with the little things, the kind of everyday slip-ups we’ve all experienced. Mum would lose her car in the car park, forgetting which level she’d parked on.
She would grab milk at the grocery store, not remembering we already had two full cartons in the fridge. She’d struggle to figure out how much change she was owed from a cafe or recall the names of some of my friends.
But that’s normal… right?
The change in her personality and demeanor was probably more noticeable to me early on, even at 14.
Mum suddenly seemed really angry, all of the time. She was snappy. Defensive. She was quick to start an argument or lose her temper. She didn’t seem to like me very much.
Don’t get me wrong, I knew my mum loved me. She didn’t have a choice. But she didn’t seem to like me as a person. I was always making her angry.
My parents had what was always a pretty relaxed, happy marriage, but Mum was starting to accuse Dad of all sorts of outlandish things.
Realising something wasn’t right and doing everything in his power to help get to the bottom of it (which included numerous trips to a range of doctors and specialists), Dad suddenly seemed to be Public Enemy No.1.
In her eyes, he was “picking on her” and “trying to turn the kids against her”. There were even threats from my mother to take myself and my two younger brothers and move back to her native New Zealand to stay with her parents.
Being the eldest, I was privy to more than my brothers, and saw more than any teenager should have to witness. As Mum’s health declined, the roles of the family had shifted.
I was no longer a child, but an equal. Dad’s right-hand woman, his comrade in the trenches. I had become, by default, his closest adult confidante to which he could float ideas off and debrief test results with.
Internally, I was furious.
I didn’t want to have to be the adult. I didn’t want to come home from school, only to be greeted with a heavy conversation about which terminal illness Mum had been tested for that day.
In fact, I didn’t want to have to talk about any of it.
I wanted to stick my head in the sand and pretend like none of it was happening.
Except that it was and by this point, the decline was as rapid as it was devastating.
After ruling out various diseases and possible causes for her symptoms such as a brain tumour, sleep apnoea and menopause, scans came back confirming our worst nightmare.
In 2002, Mum, at only 51 years old, was diagnosed with early onset dementia.
A disease for which there is no cure. No treatments or therapies to keep it at bay, or reverse the effects. Dementia had no sexy celebrity ambassadors or national day of recognition. In fact, they still hadn’t even figured out what exactly causes the disease, or how it develops and spreads.
We had been given a death sentence and sent on our way, left to figure out the rest on our own.
I didn’t realise it at the time but that was also the day we lost our darling dad.
By this point, Dad had been forced to quit his job to become Mum’s full-time carer at home, a role he had no experience in - not that there’s anything that could ever prepare you for that.
He suddenly had to get across the family accounts. The bills. People’s birthdays. He had to learn how to make school lunches and braid my hair. He had to do all the washing and drive us to sport. He had to bring up three teenagers whilst simultaneously caring for his fast-declining wife.
As we all went through puberty, Mum was digressing. She needed us to bathe and dress her. Feed her. Keep her out of the cupboards and away from the Draino so that she didn’t accidentally hurt herself.
Dad had basically become a single father of four.
He was so busy caring for Mum, so lost in his grief and heartache and depression that we lost the dad we knew that day too.
As a family, we spent the next few years just doing what we had to do to keep afloat.
By this point, Mum had stopped talking. No longer recognising her three young children. She had become aggressive, her physical strength predominately untouched by the disease eating away at her brain, so she could be quite dangerous and terrifying, without meaning to be.
She was double incontinent. Our once beautiful, five bedroom waterfront home now ruined by the faint smell of urine or worse, the sickeningly sweet scent of the vanilla air fresheners Dad would use to mask our hell.
To this day, whenever I enter a bathroom that uses the same air fresheners, I have to use every ounce of my self-control not to vomit.
It was a long, hard, soul-destroying slog to the day that we finally got the call telling us there had been an opening for Mum at a nearby care home, specialising in dementia sufferers.
It had taken way too long. It had caused severe, irrevocable damage to myself and to my two younger brothers. To my Dad. None of us would ever be the same again.
One Monday last month, after spending the day at her care home in Waroonga lying side by side in the warmth of the sun, I told my Mum how proud she would be.
How proud she would be of Dad, stepping up to the plate and raising three teenagers into intelligent, funny, thoughtful humans. How his loyalty and love had been unwavering.
I told her that she was the best mum in the world and thanked her for choosing me to be her daughter. How lucky I was to have had such a powerhouse of a woman to look up to.
Then I finally let go of her hand, kissed her and whispered that she could let go if she wanted to. That it was okay. We’d be okay.
At 4pm on Monday July 1, 2019, our beloved Mum, Dad’s beautiful girl, Kay, finally lost her 23 year long battle with early onset dementia.
Dementia is currently the leading cause of death for women in Australia.
Let that statistic sink in for a second.
So many people have no idea how common this disease - and it is a disease, not simply a 'part of getting old' - truly is.
It doesn’t just affect the elderly. People as young as 30 can be diagnosed. It doesn’t discriminate. It doesn’t care how old you are.
And whilst it’s the leading cause of death for women, it’s also the second cause of death for Australians overall and we’re not talking about it enough.
We’re not making enough noise. Raising enough funds. Giving enough shits.
Typically, as a young person in Australia, if you have been touched by dementia, it’s a faint memory of an elderly grandparent. But it's far too common, and one day, it might be your parent or your aunt. Your cousin, your sibling, your friend.
This insidious disease might just creep its way under your front doors and into your homes and by that point, it will be too late.
We need funding now. We need to figure out what’s causing dementia and more importantly, how to stop it.
Because I cannot sit back and watch even one more family go through the torture that my family has been through. I just can’t.
To learn more about dementia, head to dementia.org.au or to donate to my brother’s “Shave For A Cure” fundraising event in honour of our late mum, Kay, please head to https://makingadifference.gofundraise.com.au/page/ashavetoremember.