THERE became times when Edie Mayhew found it hard to put sentences together but when wife Anne Tudor needed her most, Edie could find the right words to say.
In public, Edie tended to be the quieter one when sharing their story of dementia but she always had a well-timed quip.
Edie Mayhew died peacefully early on Tuesday morning, in the arms of Anne after a short health battle, unrelated to the younger onset dementia she had faced the past 10 years. Edie was 69 years old.
Together they shared their highs and lows in facing the deteriorating mental disease with Ballarat, Australia and on the international stage in a bid to make the world a more dementia-friendly place.
Together the couple was a key driver in the 2016 Bigger Hearts campaign, working with Ballarat pubs, cafes and businesses on dementia awareness. Later they helped the first steps for the state's first dementia-friendly sensory trail in Woowookarung Regional Park, set to open later this year.
They brought a human face to a disease on the rise across Ballarat that no-one really wanted to talk about.
Anne said she would miss Edie, so much, but at the same time Edie had left a lot behind her.
"Edie wasn't influenced or motivated by the external, like seeking praise, she was motivated by the internal. Edie did thing because she believed in them," Anne said.
"That's what she wanted to do. That's why there was the impact, the authenticity of her.
"...Edie was a great educator by example. Even with advanced dementia she was educating people."
Mercy Place staff formed a guard of honour in Edie's death, including off-duty carers and one on maternity leave. Anne said it was incredible to learn how much Edie had made an impact not by what she said, but for who she was - kind.
Anne and Edie learned to have a sense of humour early in their dementia journey: Anne would get locked out of the house while hanging out washing because Edie forgot where she had gone; Anne could not open the freezer because Edie had put a bread loaf in the icebox; Anne would find ice-cream in the cupboard.
Edie was a driving instructor with an exceptional memory that started to falter, leading to her diagnosis in 2010.
She kept her dry humour and compassion for always being with anyone she saw in need.
Celebrate Ageing director Catherine Barrett, who worked with Anne and Edie on dementia awareness campaigns, said they stuck their necks out to talk dementia but it had inspired many to share their experience. Dr Barrett said this movement had changed Ballarat for the better.
"Edie was an incredibly generous person and the fact she allowed us into her experience with dementia is an incredibly generous act," Dr Barrett said.
"Anne has been so steadfast in her support. She created a space where Edie felt safe and loved and incredibly well-cared for.
"So often Edie did not say a lot, but she gave the biggest, best bear hugs."
So often Edie did not say a lot, but she gave the biggest, best bear hugs.Dr Catherine Barrett. Celebrate Ageing
Dementia Australia chief Maree McCabe said everyone in the national organisation had been saddened this week.
Ms McCabe said Edie, with Anne, was an extraordinary advocate for people living with dementia, particularly younger onset dementia, and contributed great insight on advisory panels and major conferences.
"Edie did all this to make a difference for others impacted by dementia now and for generations to come," Ms McCabe said.
Edie did all this to make a difference for others impacted by dementia now and for generations to come.Dementia Australia chief Maree McCabe
One resident at Mercy Place told Anne they liked to watch Edie every time Anne had left a visit. Edie, who loved to socialise with residents, would move to sit by herself for a few moments and always looked sad - a sign she remembered.
"She never forgot my name. She had forgot our marriage and other things we had done but these are important things, really," Anne said.
"The important thing is the essence of the relationship and connecting in the moment."
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