Dementia 'maze' explored in Kingscliff woman's book
LIVING with dementia can be like spending each day in a maze and each morning, having to re-discover yourself.
Kingscliff resident Vicki Noonan knows this experience all too well, and her journey to come to grips with early-onset dementia has culminated in a book, titled Mazing Me.
It's been about three years in the making, and some of her writing has been lost along the way, on "bad days” when her disease has reared its ugly head.
But while it can be tormenting on those living with it - and indeed their loved ones - Mrs Noonan said dementia needn't be all doom and gloom, but a chance to embrace the present and achieve long-held goals.
Mrs Noonan's plans of publishing a book have now come to fruition, and she hopes this helps those with dementia, while assisting others to better understand the circumstances sufferers face. She had not initially planned to write a book, but found writing was a useful way to remember the things she learnt about herself, and her disease, each day.
"The things I was learning, I was forgetting, so a lot of people were treating me differently,” she said.
"While I was writing (the book), each day I'd wake up in a different place to the day before.
Mrs Noonan was just 58 years old when she was diagnosed four and a half years ago.
Her husband, Graeme, felt something was amiss when she was experiencing memory loss while undergoing treatment for depression.
Since then, getting used to what dementia would look like for her was a steep learning curve, and it's still unpredictable, from one day to the next. With unique traits arising in each person living with the disease, this often seemed like a guessing-game.
"It felt like a maze to me,” Mrs Noonan said.
"I didn't know which way to turn each day. I didn't know what to do.”
But she said it was still possible to grow, and to enjoy life, even while living with dementia.
That's something she hopes her book, which was published by Xlibris and will soon be available in local book stores, will help both those living with the disease and their loved ones to better understand.
"I just wanted to make it a fairly positive book,” she said.
"It was (a chance) to let my children know that I had grown as a person and that even though I had dementia, I was still learning new things.
"There's over 400,000 people with dementia in Australia, and people with younger-onset dementia are being diagnosed every day, so I thought maybe they're the people that might get something out of it.”
She said something often misunderstood was the life expectancy of those with early-onset dementia, and urged others to make the most of life, while they could still enjoy hobbies.
"A lot of people hear the words early-onset dementia and think that means you have got lots of years left,” she said.
"But people with early-onset dementia don't live as long as people who are diagnosed later on.
I want people to know that if you've got dementia, you can live well with the disease. You don't have to suffer.”
Her book, which contains stories, images and a range of poems, is something Mrs Noonan hoped everyone facing a journey with dementia could connect with.
"Everyone's going to be in their own little maze and I'm hoping they can navigate themselves around another corner and realise that they can still have fun and they can still enjoy life,” she said.
"But it's really important they get in and do the things they really want to do now.”
For the Noonans, this has meant spending time with loved ones and enjoying the company of their 10-week-old grandson.
Mr Noonan said one of the greatest challenges since the diagnosis had been its impact on their two sons, but he was proud and positive about his wife's determination.
The Australian Bureau of Statistics recently found dementia is the leading cause of death in Australian women and the second leading cause of death for all Australians.
Alzheimer's Australia Chief Executive Officer Maree McCabe said more research into the disease was vital.
"This (statistic) combined with the increasing prevalence of dementia is surely a cause of concern for all Australians,” Ms McCabe said.
"While we are living longer lives, more and more of our mothers, sisters, daughters and partners face a future of living with dementia and eventually dying of dementia.
"Dementia is undoubtedly one of the biggest public health challenges facing Australia, with more than 413,000 Australians living with dementia and an estimated 1.2 million people involved in the care of someone with dementia.”
She said the number of Australians with dementia was expected to grow to 1.1 million by 2056, unless there's a major medical breakthrough.
"The emotional cost to the person living with dementia and their loved ones is profound,” she said.
"The annual cost of dementia in Australia is $14.67 billion and is expected to be $36.85 billion by 2056.”
The National Dementia Helpline can be reached for free at 1800 100 500, or visit fightdementia.org.au.