Source : Perth Now news
Some of Western Australia’s greatest people are all around us. We see them every day, but I’m guessing they often feel invisible.
They don’t win Brownlow Medals. They mostly don’t make the news and they certainly don’t seek applause. They’re quietly spending their time caring for someone they love.
If you’re one of those carers, thank you. It’s taken me many years to fully appreciate how you make such a difference to our community and to understand just how valuable you are.
It’s even led me to fully understand marriage vows, which have gone from just being words to being the start of what you’ve truly committed too.
“For better or worse. In sickness and in health.”
They’re beautiful promises on a wedding day, spoken with hope, laughter and hopefully a few happy tears. But not many of us realise what we are really signing up for.
For some couples they become the blueprint for everything that follows. My mate Mark Duffield has lived those vows but this isn’t really a column about Duff.
He’s simply the reason I’ve been thinking about the extraordinary people who quietly care for loved ones who are living with a debilitating illness or disability.
These people just like my mate Duff are modern-day saints in my eyes. You’ll remember Duff, he was one of this State’s pre-eminent football writers for many years.
What many haven’t seen is the courage that has existed away from the spotlight.
Looking after the love of his life. Trying to make each day as normal as possible when life had become anything but normal.
Blokes being blokes, we never really spoke about it in the depth it deserved but I’m smart enough to know what goes on behind the scenes.
Mostly we talk footy. Eagles and Dockers. The latest AFL controversy. All the good stuff that really in comparison is very unimportant in the scheme of things.
Every now and then I’d catch a glimpse of what his world had become. Hospital appointments. Medication. Keeping his wife Sharon safe. Trying to preserve as much independence and dignity as possible.
And it made me realise something. If you’ve never cared for someone living with a progressive decline in cognitive function, you can never fully understand it.
You can sympathise. You can imagine. You can care deeply.
But until you’ve lived it, you can’t truly know the emotional exhaustion, the grief that begins long before the inevitable end, the guilt, the frustration and, strangely enough, the moments of laughter that somehow keep everyone going.
That lack of understanding is one of the reasons some illnesses still carry a stigma.
I think the best way to remove stigma is to tell stories. Real stories.
Honest stories. Because dementia doesn’t take away someone’s humanity.
They’re still there. Sometimes they’re just harder to find. One sentence that was shared with me has always stayed with me. “She may one day not remember me, but I remember her.”
Bang — doesn’t that pack an emotional punch.
I don’t know if I’ve ever heard a more beautiful definition of love. Sometimes love is simply showing up.
Again, and again, and again.
My personal experience has been that sometimes dementia allows room for humour, in fact it actually helps you on your journey and is often a good way to deal with despair.
I remember asking one lovely lady living with dementia how she’d been. She looked at me and said, “I’ve got no idea”.
I laughed. She laughed. It was the response of a true Aussie.
For that moment, we were simply two people sharing a private joke. Another family recounted how their mum looked around at all the framed family photos on the wall before asking, “Who are all these ugly kids?”
Personally I was bracing for a zinger from an old fella I knew. I was just waiting for the day he didn’t recognise me and started telling me about this TV bloke called Barra.
“Hasn’t he put on some weight since he played for the Eagles” would have been the comment. My answer of course would have been, “yeah really let himself go hasn’t he”. Followed by “and don’t I know it”.
I’ll never know if that was the dementia talking or whether old Joe just played a joke on me.
But never fear, dark humour isn’t disrespectful, often it’s just a good coping mechanism.
For many families, it’s a survival mechanism. One of the biggest lessons dementia specialists now teach is beautifully simple. Don’t argue with the disease. Join their world.
If they believe they’re 39 years old, let them be 39. And I’ve got to admit, what an honour it is to let nostalgia rule. It’s one of my favourite pastimes. For example, just last week I asked my daughter to visit my old school when she was in Bangkok. I was a student there in 1970 and am now really enjoying the photos she took for me.
So if someone you know believes you’re an old school friend, spend a little while just being that long forgotten friend.
Correcting someone just creates confusion and maybe even distress. It’s unnecessary, meeting them where they are often creates calm, is what I’ve learnt.
Perhaps there’s a lesson there for all of us. Kindness doesn’t always mean being right. Sometimes kindness simply means understanding the world through someone else’s eyes.
To every carer reading this, I hope you know how much your community values what you do.
We see you. We admire your patience, your resilience. We admire the million tiny acts of love.
And if, every now and then, you lose your patience, feel exhausted or desperately need respite, please don’t think you’ve failed.
You haven’t, you’re just human. No one can carry that responsibility every hour of every day.
Please ask for help, and there should never be guilt in accepting it.
Dementia is now Australia’s leading cause of death.
Around 446,500 Australians are living with it today and that number is expected to reach one million over the next four decades. Behind every one of those statistics is a family.
And behind most of those families is a quiet hero or two or three.
So this week, after saying goodbye to Mark’s beloved Shaz. After saying goodbye to what was so clearly true love, we’re reminded that the greatest examples of love are rarely the loudest.
They’re usually the quietest. And to every Australian doing exactly that for someone they love, thank you. Your courage may not make the news.
But it makes our country a better place.
