ANNE Tudor was chatting away about all the positive aspects, feedback and personal growth from speaking at an international conference on Alzheimer's in Perth. Anne and her partner Edie Mayhew had had shared their journey of Edie’s early-onset dementia diagnosis.
Edie turned to Anne and summed up the experience perfectly: “our hearts are bigger”.
They have learned to have a sense of humour about Edie’s condition. Anne gets locked out of the house while hanging out washing because Edie cannot remember where she has gone. Anne cannot open the freezer because Edie has put a bread loaf in the icebox. Anne finds ice-cream in the cupboard.
There are times when Anne aches for the lost Edie, the one who remembered everything, always. Her rock.
“Edie had an exceptional memory. We would make a time to meet for lunch and Edie would not show up. it was not like her to forget, she never used to miss a beat,” Anne said.
Edie was diagnosed with Alzheimer’s in September 2010. She was 59 years old. There are people in their Ballarat early on-set Alzheimer’s support group in their 30s and juggling young children.
Anne said there were fantastic services and resources to help in Ballarat, but there needed to be far more adequate respite access. Awareness was difficult, she said, because of stigma associated with memory problems and the general perception it was mostly affecting old people in aged-care homes.
The couple will share their story, bumps and all, in Ballarat on Tuesday for an Alzheimer’s Awareness forum to launch national Dementia Awareness Month. Creating a dementia-friendly community will also feature a session with Ballarat Health Services’ dementia expert Mark Yates, on BHS’ had a long-established standard to alert staff to under-lying patient thinking difficulties.
Edie found it hard to admit she was having memory issues, that a frustrated sense of forgetting felt “unusual”. “Now we just get on with what we do,” Edie said.
*Forum is at G Place, English Street in Golden Point on Tuesday from 9.30am. To register, phone 9816 57 84.