Living with dementia: Speaker's honest story gets ovation
"SOME days the Devil whispers, 'You are not strong enough to withstand the storm' ... and some days I get up and say, 'Today, I am the storm'."
The closing words to Sarah Ashton's presentation on the lived experience of dementia earned her a standing ovation at the 10th International Arts and Health Conference last month.
Sarah, from Port Macquarie, was one of several speakers with the courage to share their mental health struggles to help others better understand their condition.
None sought or engendered pity, instead displaying their incredible inner strength to not just cope and reclaim control of their own lives but actively work to help others.
"My life got turned upside down the moment I got this diagnosis," Sarah acknowledged.
But she has discovered ways to manage what she calls "the everyday frustrations".
All her bills, for example are on auto payment.
She has diaries everywhere detailing her appointments and what she needs to do.
She has clocks and calendars everywhere "in case I want to check what day I think it is today".
She keeps busy socialising, as a member of various groups, doing advocacy work including Joining the Dots for Dementia, taking part in research, doing art and craft, listening to music and caring for her pets and her garden.
She recently won the Impromptu section of her Toastmasters International area speaking competition and will compete at the District competition next March.
Looking after your diet, walking or exercising every day, engaging in intellectual exercises such as puzzles, brain training, games and reading were also important.
Legal paperwork, she urged, must be put in order as soon as you receive a diagnosis, so you are still considered legally competent to truly know your wishes.
That included a professionally written will, advanced care directive and power of attorney, all with "meat and bite" as to where you want to live, and what is to happen to the assets if your home has to be sold if you need higher level care.
But she admitted the challenge of dealing with aspects of dementia and "pretending to be a functional adult" was exhausting.
She described dementia as a process of loss; "your brain being torn apart from your body and mind" and warned what was once seen as an older person's affliction, was now striking all ages, even a young mother.
"No one is immune," she said.
Still, she said, she has hope because "hope opens people's eyes".
For information on Alzheimer's and other forms of Dementia go to www.dementia.org.au or call the National Dementia Helpline on 1800 100 500.