My Dad, My Hero: The toll of dementia
THERE’S ongoing public debate about assisted dying or voluntary euthanasia. After seeing first-hand what my parents are now going through, I’m all for it, says GARY RAMAGE.
Illness
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FLYING back home to Canberra from Perth I have tears running down my cheeks. Some of my fellow passengers are staring at me. Others look as if they’re trying to pretend they haven’t noticed.
I need to put my feelings into words. But as a photographer, I don’t do words — I do pictures.
I love my dad. As all young boys do, I always looked up to him. I always will.
He was always there when I needed him — from my earliest days to my bloody-minded and rebellious teenage stage — helping me as I took my first steps and as I bought my first car.
When I put a garden pitchfork through my foot at the age of five he was the one who picked me up in his arms and carried me to the car.
I’ve always disliked the way the word hero is overused. Applied to athletes and anyone who does something a little out of the ordinary. But on this occasion, I put aside my own misgivings. My dad is my hero.
As a young boy living in country South Australia, he was constantly at me to polish my soccer boots. This had a long tradition. His dad, my grandfather, had played semi-professional football in the UK and had taught him to polish his boots before every game.
So, I would sit on the back steps of our house in Mount Gambier and work on my boots for ages. All to please dad and make him proud.
It’s a habit that’s lasted. To this day, I still polish my boots before I go to work. That pride thing is hard to shake off, I guess. As a former soldier and war photographer covering conflicts for more than 25 years, I thought I had seen the worst humanity had to dish out. But nothing could have prepared me for my visit back to Perth to see my father who now has stage four dementia.
Before I left Canberra, my sisters confided in my wife that they were concerned for me, as I hadn’t seen my dad for 12 months.
But as usual I just shrugged it off, thinking it would all be fine. But fine it was not. I can only equate it to a feeling of being king hit from behind.
I had left my visit to Perth too late. Way too later. My 72-year-old father now has no idea who my two sisters and I are. The rollercoaster of overpowering guilt and emotion I am now
experiencing is simply overwhelming.
Putting work before family will be my greatest regret. The ever-demanding news cycle I am constantly drawn to has now cost me any precious time I thought I still had left to spend with my ageing father.
I hate myself for it. And it’s something I now must live with. But at the end of the day, we all must take responsibility for our actions and decisions. Another lesson my dad taught me at an early age.
In typical military style, I have gone into overdrive in an attempt to make things easier for my family.
My mum is now looking after my dad 24/7. She now has to guide him to the toilet, dress him and constantly be alert. She is frustrated and angry at this disease that has claimed her life
partner, husband and love of her life of more than 50 years.
There is no sign of dementia in my family history. And yet here we are.
As blokes we are taught to be strong, not to show emotion. To show emotion is to show weakness. Soldiers stick to this mantra even more strictly. What a crock!
During my trips to Afghanistan over the past 12 years covering the Australian and US soldiers on operations, I witnessed some horrific sights.
At the time it made me stronger. Having young boys die at my feet in the back of a US medevac helicopter and witnessing what an IED (Improvised Explosive Device) does to human flesh is challenging to say the least, but seeing my father disappear before my eyes is a whole different ball game.
I haven’t been trained for this and I have no skills to pass onto my sisters or mum to help them deal with it.
In a word, I feel helpless. Not being in control is gut-wrenching.
Coming to terms with this disease is not easy. Part of the frustration, from my mum’s perspective, is the bureaucracy that must be dealt with surrounding entitlements.
When dad was first diagnosed eight years ago, at the age of just 64, she was advised there was a tiered process for accessing payments based on his stage of dementia.
They initially had to wait 12 weeks for an appointment with a specialist and then a further 12 months before receiving any financial assistance.
Back then, he was classified as having stage two dementia.
She was told that after he was diagnosed there would be a 12-month waiting period before receiving any financial assistance from the WA government.
That time has passed and they receive assistance payments for his initial category two diagnosis, but now he has been reclassified as a stage four — the highest rating for the disease.
They have to wait another 12 months before any further financial assistance is granted for the increase in costs associated with looking after him at home as a category four sufferer.
There are no reimbursement payments during that 12-month waiting period.
My parents are not wealthy. Both are on the state pension and now living in an over 55’s facility. At times it feels as my dad might die before the financial assistance they need arrives.
Dad always said he never wanted to be a burden on my mum in his later years and we, his children, weren’t to let it happen.
Sitting beside him on the couch was heartbreaking. Every now and again he would have a few seconds of lucidity and break down weeping uncontrollably, saying he doesn’t understand what’s happening to him or why.
I remember one of my military bosses telling me “Don’t give me problems, give me solutions”.
I have the solution to my father’s pain. It’s slap bang in front of me.
I could end his pain and suffering now, but I’d be on the wrong side of the law.
No loved one should be made to suffer like this.
We don’t think twice about ending the life of an animal in pain. We don’t let our beloved pets suffer. And yet when it comes to our parents, our hands are tied.
There is ongoing public debate about assisted dying or voluntary euthanasia. After seeing first-hand what my parents are now going through, I’m all for it.
This drawn out journey my parents, sisters and I are now on — along with thousands of other Australians — is unfair.
What will it take for our elected representatives in Canberra to take steps to deal with this scourge in our senior community. Here is an opportunity for them to prove to the Australian people they do have our welfare at heart.
If we can have a national debate about same-sex marriage, why can’t we get this taboo topic out in the open and deal with it once and for all as a nation?
Our loved ones deserve that respect. And to die with dignity. Just the other night while we were all out for dinner, my dad came back to us for a split second.
He turned to my mum and said: “I will always pick you as my partner.”
Naturally, this reduced her to tears. And it left me wondering what I can now do to ease the pain and suffering of my dad, my hero.
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