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Kate Swaffer was just 49 years old when doctors said that her
inability to remember some words and her mix up of colours and numbers was actually
dementia.
In Wellington as a keynote speaker at the Alzheimers New Zealand
annual conference, Adelaide-based Swaffer is now 58 and
an advocate for people with dementia. She has outlived the prognosis
that she might die in six to 10 years, while living a full, active life and
achieving far more than many without dementia.
Currently studying for a PHd, it's hard to believe that the eloquent speaker and activist was told by her doctors almost a decade ago to quit her sales job, pull out of university and get her end of life in order. Doctors told her to consider a day in an aged care home one day a month, so she could get used to the place she might eventually call home.
Her teenage sons were traumatised. In their young minds, dementia was a
disease that struck "grannies and granddads", not their
mother who hadn't yet turned 50.
Friends began ignoring her, while her wider family didn't know
how to cope. Her husband was advised to quit his job as he would eventually
become her full-time carer. At the time, she was
insulted. "I was told by my doctor to give a whole lot up. It
wasn't even logical," she recalls.
Named as one of Australia's 100 Women of Influence, Swaffer travels
the world inspiring others as a co-founder of the not-for-profit Dementia
International Alliance, urging them to make the most of their lives. Two
books are stacked on a table at the conference, both written by her, along
with a book of poetry she has penned.
She lives with her condition each day, but she refuses to be
labelled "a dementia sufferer". When she is tired, sometimes she
jumbles her words and can't speak. She still gets the colours orange and green
mixed up, and the numbers 8 and 9, the dyslexia that came on in her late 40s,
sparked by her condition. At times, she forgets her husband's name. One of
her sadder moments was being unable to recognise a piece of classical music - Mahler's
Third Symphony - that was once a joy.
"Even though I'm living well, or living beyond the perceptions of
what I should be able to do, that was the most frustrating thing. I cried
for two weeks after that. To go from being able to say I loved it, to not
even recognising it, that's deeply sad."
"But let's break the mould of the suffering," she said.
"There are too many of us who are just not suffering. Of course
some days I suffer because of dementia, but sometimes I suffer because of the
pain of my arthritis. Being told I am a "victim of dementia" is so awful.
It's just not like that. And that continues to promote the misconception that
it's possible to live a good life with dementia. If we only talk about
suffering, and the evils, then the 47.5 million people diagnosed are punished
with that view."
On Tuesday night, she will find out if she is the South Australian
winner of The Australian of the Year, for her work with dementia. She has
also been named one of Australia's 100 Women of Influence, and graduated
with a Master of Science in dementia care two years ago, on the back of a
Bachelor of Arts - the degree she was studying for when diagnosed.
"If I lost my legs in a road accident, they wouldn't tell me to go
home and die. My life would never be the same again but would they say,
"Don't live?" That's how I have approached it and I want others to do
the same."
Ironically, Swaffer was nursing 40 years ago in a dementia ward, back at
a time when people were diagnosed with dementia far later. In the early days
after her diagnosis, she wrote poems about the fear of slipping away and of
losing her mind.
She thinks that while earlier diagnosis is good for those with the
condition, who can take medication if appropriate and live healthier
lives, they are being managed as though they're much further on. "The world
is pushing for earlier and earlier diagnosis, but they haven't changed the
way they're treating us post-diagnosis."
These days, her poetry is more hopeful. "Near the end I'll be
suffering but my family will be suffering far more than me. I know we
do suffer at times, of course we do."
Early onset dementia used to be a term for anyone younger than 65, but
is now applied to those in their 50s. About 60,000 New Zealanders live
with dementia, costing the country $1 billion a year.
Mick Conway, a 61-year-old from Brisbane, was diagnosed with
dementia four years ago. Also at the conference, he wobbles and needs to
lean on a table to stand up. Dementia has affected his
balance, along with his short-term memory. "I won't remember
something we talked about 10 minutes ago," he smiles.
Professor Richard Faull, director of New Zealand's Centre for Brain
Research, and considered our leading expert on the human brain,
said people with dementia deserve to be treated with dignity, rather than
written off and stigmatised.
As Alzheimers New Zealand calls for one year of active support for those
diagnosed, he says: "They don't stop being a person once they are
diagnosed.
"This is just another challenge in life coming along, and we have
to make sure that a person with dementia enjoys every day of their life."
Source: stuff.com. Sarah Catherall
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