Dementia is the number one killer of women and almost half a million Australians live with it. By 2050 that will be one million. To coincide with Dementia Action Week, Sarah Jones – author of Dementia, Who Are You And What Have You Done With My Mother? – shares this exclusive article.
Everything is relative isn’t it? I just read the delightful story of a couple of “older” Brits who, suddenly finding themselves homeless, thought it a good idea to walk the rugged and blustery North West path of England. Nothing like a 1000km walk to take your mind off your problems.
The reason I bring this up is the fact that all through the book, they were constantly referred to as ‘old’. As I read of their aches and pains, their trials and tribulations, I imagined they must have been at least in their eighth decade of life. It turns out they were only 50. As one who is just shy of my 56th birthday, 50 sounds pretty young to me. It doesn’t seem all that long ago, I was angst-ridden about turning 30.
As this fleeting thing we call life barrels on, things start to droop, wrinkle, fade and wear out. It all sounds a bit depressing doesn’t it? But we know it’s just par for the course.
As if an ageing body isn’t enough, the hands of time play tricks on our minds as well. Mum, who had a 28-year head-start on me in the ageing department, had started to forget things. Just little things.
“Who’s that bloke that wrote that book I just read?
“What’s the name of that place we used to go for holidays?”
“Where was that restaurant we went to for my birthday?”
Everything was just on the tip of her tongue, so she would tell us. If only she could have poked it out so we could have read all the answers.
Reaching for a word that seems to have temporarily eluded us is commonplace for those of us whose hair is not as vibrant as it once was. Surely this was no call for alarm?
Soon Mum started repeating herself. Regaling us with a wonderful story about something she’d seen that day, within the half hour, she’d tell us the story again, with no less gusto.
“You’ve just told me that Mum”, I’d say.
Sometimes the story would even get a third or fourth re-telling, with Mum seeming oblivious to her repetition. Hmmm. Should we be worried? Could we just ascribe the blame to old age?
Those small things Mum was forgetting eventually became bigger things. She went to pick my nieces up from school one day and completely forgot where she’d parked the car, searching in earnest with the kids in tow, for almost half an hour. This too we excused away. Wasn’t it easy to forget where you’d parked? I’ve done it.
But things started piling up and excuses became harder to find. Dings to Mum’s car she had no recollection of, washing left on the line for days, forgetting how to wash the dishes, getting lost in her local neighbourhood of 30 years. Coupled with forgetfulness came subtle personality changes; a lack of tact; a fiery temper; obsessive drinking. We started to wonder.
But no-one mentioned the D word.
Mum remained resolute there was nothing wrong with her and we gave her the benefit of the doubt, though decided to encourage a trip to her friendly GP just the same. He would calm our fears and show us it was just old age after all. We hoped we were all just over-reacting?
Listening intently as we rattled off the growing list of concerns, the GP nodded his head knowingly and, rather than agreeing it was all a beat-up and this was completely normal behaviour for someone her age, he suggested an appointment with a geriatrician, pronto.
It was not long after that, at that appointment with the geriatrician, our little family of four got the stark and irreversible news – delivered in a very matter-of-fact fashion, I might add – that our beautiful mother; dad’s wife of 49 years, had dementia.
We were scaling up the face of a very steep learning curve and had no clue what was on the other side. Barely had we left the doctor’s surgery before I was frantically Googling all things ‘dementia’ and wondering what on earth to do next.
I decided to share my experience, embarking on a book – the kind of book I’d have dearly loved to read when faced with Mum’s diagnosis.
My hope is that this book will be a support and comfort to other people finding themselves in the same position or at the very least, an insight into what it looks like to watch a loved one decline at the hands of this cruel disease. If my book can help someone feel that they are not alone, it has all been worth the process.
‘Dementia Who Are You and What Have You Done With My Mother?’, by Sarah Jones is available through the author’s website: wordsbysarahjones.com and selected bookshops. RRP $29.99.
