To launch our 2017 Dig Deep 4 Dementia Tax Appeal, we’d like to share a story of a fourth-generation serviceman John, a fit and active 33 year old who was the last person you’d expect to get dementia. But he did – and so could someone you love.
A gift of just $30 to Alzheimer’s Australia (Qld) could help give families like John’s the support they need to endure this terrible ordeal.
Donate to the Alzheimer's Australia (Qld) Tax Appeal Now.
“Dementia is not something to worry about at my age.” “It’s an old-aged condition.” “People just lose their memory and slip painlessly away.”
That’s what many people believe about dementia. I’m sorry to say, none of it is true.
The reality of dementia is that it is painful, undignified and heartrending. It causes unbearable suffering – and as John’s story shows, it’s a tragedy anyone could face.
When Lucy met John he was full of life. Fun and adventurous, he loved anything active and exhilarating – camping and fishing, riding his motorbike, bungee and skydiving. He had a cheeky sense of humour, and was always finding ways to surprise and make people laugh.
But what really defined John was his devotion – to the family he adored, and to his country. A fourth-generation serviceman, John had always wanted to follow in the footsteps of his father, and took his duty as a solider very seriously.
Fit, active and just 33 years old, John was the last person you’d expect to get dementia. But he did – and so could someone you love.
Until we find a way to prevent or cure this awful disease, thousands of Australian families will face this deadly battle. Please can you send your gift of $30 to Alzheimer’s Australia (Qld) today to help give families like John’s the support they need to endure this terrible ordeal.
After two tours in Iraq, John retired from the army and settled down to married life with Lucy. Tragically, by the time their daughter Emma was born, things had begun to go very wrong.
Lucy told me it started with headaches, which became so bad, so constant, that John believed he had a brain tumour. But scans were clear, and more symptoms kept developing. Bouts of depression, anxiety and mood swings came next, intensifying into panic attacks after Emma was born. John underwent tests and was diagnosed with Post Traumatic Stress Disorder (PTSD), but as her husband continued to change before her eyes, Lucy knew something more sinister was going on.
“He struggled with focusing, his mood swings were erratic, he even had difficulty looking after Emma on his own for longer than a couple of hours. And his speech had changed. He was speaking very quietly and started to stumble over his words. Then his balance and coordination became very abnormal. He would trip a lot and he couldn’t run properly or throw and catch a ball.”
As John’s symptoms progressed, his illness took a terrible toll on Lucy, too. “John was turning into a completely different person from the man I had married. He was a shadow of his former self, and I had trouble understanding why and became depressed myself. Was it just the PTSD or depression? Could those things change a person that much? I was at the point of being unable to look after Emma let alone myself and John, due to depression.”
When dementia strikes, it’s not just the patients who suffer. For people like Lucy, it’s sheer agony watching someone they love slip away.
With your help, we can be here to support them though this heart-breaking struggle, providing vital education, care services and helping them find the strength to keep fighting. Please send a gift of $30 now so families like John’s won’t have to cope alone.
Over the next six months, Lucy threw everything into getting help for John. It was obvious something was drastically wrong, but nothing made sense. John was so young that no one suspected the real cause. Then John had an MRI, and the results were devastating.
“The MRI was the beginning of the end. It finally showed there was something abnormal with John’s brain: general brain atrophy. His brain looked normal for a 90-year-old person, but not a 33-year-old. Now that I knew about the brain degeneration, the more research I did into his symptoms, the more I realised we were looking at something terrible.”
A few months later, in September 2013, Lucy’s worst fears were confirmed. John was diagnosed with fronto-temporal dementia. Like most people in her position, Lucy reacted to the news by searching for a solution.
She quickly discovered there wasn’t one.
“At this point I realised that our marriage, our little family, our life as we had known it before, would never be the same, and we would never be able to get it back. There was no recovery, no cure.”
After John’s diagnosis, his decline was dizzyingly rapid. Lucy told me the heartbreaking milestones came thick and fast. He had to give up his job and was deemed unsafe to drive. Then, just three months after his diagnosis, Lucy was told that John could no longer safely be left alone.
There was no alternative but to admit him to an aged-care facility, the only place he could get the 24-hour, high-level care he needed.
“It was absolutely unreal and devastating. We never had time to come to terms with what was happening with John. We would get used to something that had changed or declined, and a month later something else would happen. It was continual loss, continual grief.”
John struggled to accept what was happening. He couldn’t accept that his loss of independence was permanent, or that his condition was terminal. It was a brutal reality no one should to have to confront, especially at 33.
Dementia is the second leading cause of death in Australia. In its final stages it can render people severely disabled, unable to eat, speak, walk or even use the toilet by themselves. It’s a horrific disease that gradually strips away everything precious – dignity, memory, personality and independence.
Every year, thousands of people like John face the horrors of dementia. Next time, it could be someone you love – and it can be a terrifying, lonely journey.
Please send a gift of $30 today, to give families battling dementia the emotional and practical help they so desperately need.
By mid-2015, John’s dementia entered the final stages, and it was clear the end would come soon. At just 5 years old, Emma was about to lose her beloved Daddy. Right to the end, she was his greatest joy.
“John was sleeping, curled up on his side, wheezing and gurgling. Emma said to me, ‘Mummy, will Daddy go to heaven tomorrow?’ I said, ‘Maybe darling.’ Then she said, ‘I think he will go in the night.’
And he did.
”On 28 August, less than two years after he was diagnosed, dementia claimed John’s life. At just 36, his family were forced to say goodbye to the loving, devoted man they loved so much.
“His love for me and for Emma never changed. His devotion never changed. It was just his ability to look after us. That’s what changed.
”Lucy is still struggling to come to terms with their devastating loss. She’s doing everything she can to keep his memory alive for Emma.“John’s photos are everywhere in our house. If Emma has to make a wish it’s always that Daddy would come back. She blows him a kiss and sends him a heart each night before bed, so he’s still very much in her life and in her memories.”
Dementia is a killer that no one can beat. Right now, it’s bringing untold suffering to more than 413,106 Australians. Approximately 25,983 of those have forms of younger onset dementia like the one that killed John. Some are as young as 30. And none will survive.
We believe that no family should have to suffer alone, and with your help we can be here to support them at every step, with information, counselling and support services that offer a lifeline for families like John’s.
“Alzheimer’s Australia were just amazing. They were able to provide us with counselling, family carer training sessions and advice. John decided to go to a younger onset dementia group that he really enjoyed right until he wasn’t able to go, three weeks before he died.
It just made a huge difference. I’d have been quite lost without the information and support we got from Alzheimer’s.”
Every day more people like John and Lucy have to endure the torture of dementia.
With your help you can be here to help them cope. Please send an urgent gift of $30 today to fund crucial support services and help relieve their suffering.
Donate a tax deductible gift to Alzheimer's Australia (Qld) and ensure families will not have to face dementia alone!
On their behalf, and in anticipation, I thank you for digging deep and donating your gift of kindness today.
Victoria Beedle CEO Alzheimer’s Australia (Qld)
P.S. Dementia can strike any family, at any time – including yours. We urgently need to give families like John’s the help they need to face this horrible ordeal. Please send your gift of $30 or even $50 today and give us a fighting chance. To protect the identity of John’s family, real names and pictures have not been used.