While she didn’t win the title of Australian of the Year, dementia advocate Kate Swaffer is grateful and humbled by the experience of being named as the South Australian of the Year.
Ms Swaffer, who was a nurse in Adelaide’s first dementia unit in the 1970’s before starting her own catering company, was diagnosed with a rare form of dementia when she was 49.
Since her diagnosis with dementia, Ms Swaffer has completed three university degrees and is currently undertaking her PhD.
As Chairwoman, Chief Executive and Co-Founder of Dementia Alliance International, she has been the voice for dementia patients, sitting on numerous committees and councils, and was the first person with dementia to be a keynote speaker at a World Health Organisation (WHO) conference.
“I don’t think there is very much progress in actual change on the ground (in dementia) at the grassroots level yet, but there is change coming,” she says. “It’s the only disease I know where you’re told to go home and die.”
And in fact, when asked before the awards were announced if she wanted to win, she told the Adelaide Advertiser: “I worry about two things – that I would do the role justice and, would it take away from the real work I want to focus on?”
“It was a bit embarrassing really,” the 58-year-old says.
“There are thousands out there doing great work. It was overwhelming. I didn’t expect to win and I hadn’t realised what ‘big time’ it all was.”
On her blog www.kateswaffer.com she writes: “There have been moments when winning the state title has brought on a few of the very worst experiences of my life, but this last week, it has felt like we were totally wrapped in a cocoon of love. I remain eternally thankful and grateful for the love and support of my friends and family and my global dementia friends and community.”
She said more needed to be done to offer people with dementia rehabilitation and dementia care support to keep living their lives rather than late stage management.
“I guess when you are diagnosed with an illness that number one is terminal but number two is changing your capacity to function, your attitude to life changes dramatically. So, I guess I’m squeezing every little bit of lemon juice out of what you would call the lemon of life to make sure that every moment counts. I am living every day as if it’s my last, just in case it is. I urge you all to do the same!”
Kate Swaffer is the Author of What the Hell Happened to My Brain? – Living Beyond Dementia
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To find out more about getting the right support and care for a family member with dementia, contact Oxley Home Care on 1300 993 591.
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