Dementia doesn’t control our lives – we do. It defines a lot about how we live, but not us as people.
ANNE TUDOR witnessed a decline in her partner Edie Mayhew’s cognitive abilities 11 years ago.
“Edie always had an exceptional memory, so when she started forgetting arrangements, I noticed,” Anne said.
“Edie ran a driving instructor business. She’d go into the office here at home and I thought she was working on business things but she was playing Hearts on the computer.
“She started to withdraw – there was this estrangement and she wasn’t talking about the changes in her.”
Anne nagged Edie about going to the doctor, but it wasn’t until six years later that a diagnosis confirmed Edie, who was then 59, had Alzheimer’s disease.
“Once she was diagnosed, we could start adjusting,” Anne said. “There were difficulties but from two years post-diagnosis, Edie has always been very dignified and positive.
“Both our lives changed – it wasn’t the retirement either of us had planned. Your whole life becomes about dealing with dementia.”
The Ballarat-based partners of 32 years wanted to put back into the community and became involved with Alzheimer’s Australia, telling others about their story, which included attending major conferences here and overseas.
Their tireless work was recently recognised with a Minister for Health Outstanding Achievement by a Volunteer Award in the area of supporting diversity.
Alzheimer’s Australia chief executive Maree McCabe said the organisation was proud of the couple’s contribution to raising awareness of younger onset dementia. “Sharing such a personal story takes incredible courage and they do whatever they can to support other people impacted by dementia and the LGBTIQ community,” Ms McCabe said.
Anne said their lives were now full and busy, just as they were in earlier years. Edie was a teacher of hearing impaired people before starting her driving instruction business for people with disabilities.
Anne was a clinical psychologist and psychoanalytic psychotherapist. Now, she can’t leave Edie on her own but with care services including day respite they continue to embrace their commitment to each other, and their advocacy work.
“My initial response to the changes in Edie were frustration, loss and grief,” Anne said. “But it’s a case of adjust or perish.
“It’s heartbreaking taking Edie into respite – her absence is so powerful.
“If things go wrong, we talk it through.
“At conferences we meet incredibly inspirational people who squeeze the most out of life, and we receive enormously positive feedback from our presentations.
“We’ve met so many others in similar circumstances, our friendship circles have changed. “I think Edie summed it up beautifully once when we were reflecting on how we’ve changed – she said our hearts are bigger.”
For more information on Alzheimer’s, phone the National Dementia Helpline, 1800-100-500, fightdementia.org.au
