Alzheimer's Disease Appeal
You can donate here or call 1800 063 693 to contribute to finding better answers to mental health issues.
"It's predicted that without any significant medical breakthrough there'll be one million sufferers (in Australia) by 2050."
Vivienne Ulman shares her story of her family's experience with Alzheimer's disease and joins the appeal for donations towards finding a cure.
My mother Lucy's Alzheimer's disease turned my world upside down. It shook me around as though I were a load of her washing, dumped me in the tumble dryer, and then spat me out.
I even wished she had cancer. It wasn't that my previously close relationship with her had deteriorated. The opposite really. I cared for her more deeply than ever.
But if my mother had had cancer people would have called by with advice about diets and medication. They would have been positive, brought grapes or chocolates.
With Alzheimer's there's no kidney you can donate, no body part that can be amputated, no chemo to try. No drug cure. Nothing. Just patience and anguish. And then more the next day. And then again. And again. For years. With only death at the end.
To watch someone you love disappear a fraction at a time, to see them struggle every minute of every day and know that there's not one thing you can do to help them is almost unbearable. And it isn't easy for visitors to spend time with someone who squints at them and burbles words that make no sense. Many people stopped visiting. Moreover they told us we should too.
Mum's diagnosis of Alzheimer's didn't mark the beginning of our story with the disease. It just gave it a title. By that time she'd been struggling for at least ten years. Ten years of her world gradually narrowing, of losing the ability to speak and function in the world.
We were not alone. Far from it. About 300,000 of my mother's fellow Australians are living with dementia right now. Every six minutes a new sufferer is diagnosed. But we felt alone.
As my mother moved deeper into the territory of Alzheimer's, even well-meaning friends and family members stayed away, as though her condition were contagious, or that it was her own fault. They said they preferred to remember her the way she used to be. They couldn't bear to witness what they saw as my mother's shame: this modern-day leper, a woman losing her wits, her normality, her place in society.
Then there was my mother's earliest and most painful symptom - the loss of language. Her words, which had always kept us together as a family, even more than the dinners she prepared for us, vanished into thin air.
How could she tell us news of each other, how could she support, cajole, discuss or welcome? How could she even tell us how she felt?
Mum and I had spoken on the phone every day since I left home. When she could no longer dial my number my father did it for her. We were forced to end our conversations when it became too hard for her to say even the simplest thing. Previously, this ritual had been such a pleasure to us both that she had been reluctant to hang up. It broke my heart when she gave up trying. She was becoming more and more isolated from the world.
Worse still, she became obsessed with me at one point, convinced that I was evil and that I was trying to kill her. At times she hit my father and tried to bite him.
I felt as though my mother was being sucked under by quicksand, inch by inch, without any hope of rescue. Or that my real mother had been replaced by an imposter.
We are a nation of people who believe in a fair go and in standing up for what's right. ‘Not in my backyard,' we say to inappropriate development. But here's a disease that's trawling the country, picking us off at its pleasure and we accept low levels of funding as though they're inevitable. And we accept dementia as a normal part of ageing, when it's not.
What is inevitable is the growth of the disease if nothing's done to stem it. It's predicted that without any significant medical breakthrough there'll be one million sufferers by 2050. And if you multiply that out by the friends and relatives of those people whose lives will be diminished by the experience, well who wants to live in that kind of Australia? I desperately don't want my grandchildren to go through what we went through.
A medical breakthrough that could delay the onset of Alzheimer's or reduce the prevalence of the disease would prevent untold anguish in every suburb and in every region of Australia. But that takes research and that costs money.
I was many things during the years my mother suffered - wife, mother, grandmother, sister, friend, writer, farmer - but most of all I was a person whose mother had Alzheimer's. It was always the first thing I told anyone I met. It was the answer to every question. For all those years, whether I was with her or not, that's who I was.
Alzheimer's often tears families apart. We were lucky in that respect - it drew us closer together.
Most committed of all was my 90-year-old father, who devoted all his waking hours and all his powers to the care of his sweetheart. He managed to make her life as happy as possible under the circumstances, and to enable her to live with dignity and a role in the world until her end. She never forgot he was her beloved husband and that she was his adored wife. To her dying moment she was able to hold onto that knowledge. To love and be loved. That's why I called my memoir Alzheimer's: a Love Story.
But unfortunately love is not enough. It didn't save my mother and it won't save the countless others among us who are destined to develop this devastating disease. Only science can do that. And money. The money needed to pay for the research.
That's why I ask you to donate to the Mental Health Research Institute. They need your donation to support their work in trying to better understand Alzheimer's disease and to develop drugs that could slow or hopefully even stop the disease.
I hoped my book would make people see how excruciating this disease is for the sufferers and their carers, but awareness too is not enough. It won't develop ways to diagnose this condition early enough to improve the prospects for treatment.
Thanks to your support other families' journeys with Alzheimer's may not inevitably lead to despair and decline. My mother didn't live to see this but with your help other people's precious mothers might.
To donate now you can call 1800 063 693 or follow this link to the donation page.