Following Edie’s diagnosis of younger onset dementia, Anne Tudor went about making her community more dementia-friendly and raising awareness of the stigmas surrounding the disease. This is their story.
This is part of the My Australia series, exploring identity and difference through the stories of extraordinary Australians.
One of Edie Mayhew’s best qualities was always her memory.
Her partner of 35 years, Anne Tudor, says Edie was so clever, she never imagined she’d get dementia.
“I remember we were pulled up by the police on one occasion. We’d been out somewhere and the policeman wanted Edie’s driver’s license,” Anne, 70, tells SBS News laughing.
“And she said, ‘Well I don’t have it with me, but its number is …’ and she actually prattled off the number of her driver’s license.
“I mean, who knows their driver’s license number?”
“The policeman looked at her, shook his head, and said ‘off you go’.”
The couple met 45 years ago when Edie was a teacher for the deaf. Now 69, she was diagnosed with younger onset dementia ten years ago.
Anne quit her job as a clinical psychologist and psychoanalytic psychotherapist in 2014 to become Edie’s full-time carer.
The couple lived together in their home in the Victorian town of Ballarat until the decision was made for Edie to move into residential care in September 2018.
She still remembered her driver’s license number until two years ago, Anne says.
Edie had previously worked as a teacher; her specialty was maths.
At the time she was diagnosed, she was working as a driving instructor, but her diagnosis forced her to stop.
Anne says her partner initially struggled to come to terms with what it meant to have dementia.
“I remember one night after she was diagnosed we were in the bedroom and she was getting undressed and she said ‘I may as well be dead’.”
“I’m quite sure that a lot of people with dementia early on think that.”
There are currently 450,000 Australians living with dementia and it is the second leading cause of death in the country.
Eventually, the couple decided to make the most of the quality time they had left.
They travelled overseas five times, got married in January 2018, and launched a project called ‘Bigger Hearts Dementia Friendly, Ballarat’ to make their local town more dementia-supportive and inclusive.
The project is ongoing and introduces ways to improve services and the quality of life of local residents living with dementia.
Anne’s tireless work in the community saw her named the Ballarat Mayor’s Senior Citizen of the Year in 2017.
“People with dementia are still very alive and very present for very many years,” she says.
“It’s not until the end - that might be, who knows, five years, 10 years, 15, it could be 20 years that that person might have - but in the interim why would you think only about the worst of it and not take advantage of living in the moment?”
After her diagnosis, Edie made several national and international presentations advocating about living well with dementia and raising awareness of the help that is available Australia-wide.
Her condition has now progressed to the point where she can no longer make that type of contribution, but Anne continues to advocate on her behalf.
Last year, Anne gave evidence at the Royal Commission into Aged Care Quality and Safety during a hearing about the treatment of LGBTIQ+ Australians in the system.
She explained how important it was to her that aged care providers openly accepted LGBTIQ+ relationships like hers, something she didn’t always experience when Edie was receiving homecare.
The experience when she moved into residential care was much better.
“Prior to Edie moving into her current residential facility, the CEO took us on a tour and said to me ‘you two have been together for such a long time, I want you to treat this as your home too’.
“He later told me that if I ever needed to come into care that they would find a double room for us,” Anne told the Royal Commission.
She says it’s that warmth and acceptance that makes her feel comfortable that Edie is safe and well cared for.
She is currently advocating for mandatory training for all aged care staff on providing care that is sensitive to LGBTIQ+ people as well as mandatory dementia training.
“I know she would want me to continue to do what I’m still doing and I know that she would want me to continue to tell her story.”
In its most recent initiative, Bigger Hearts successfully campaigned for a small grant distributed by Dementia Australia to kickstart a dementia sensory trail in Ballarat’s Woowookarung Regional Park.
The trail will be wheelchair accessible “with all different experiences from touching trees to smelling the beautiful coffee bush that we have growing here and all things that trigger memories, hopefully good memories from the past,” Anne says.
“We know that if you go bush you come away feeling better, and so we see this as a major opportunity for families impacted by dementia to be involved in something and then enjoy something lasting and beautiful.”
Parks Victoria’s Alex Schipperen said Anne’s experience as a carer has been invaluable during the planning of the trail.
“Her ability to bring stakeholders together, to bring the community together, the health sector, has been absolutely fantastic and that’s why we get a product that really serves the group that we built it for,” he said.
Anne hopes the trail will be ready for use by mid-2020.
“The people who are involved in this are so committed to it that it’s probably going to be the greatest legacy that I will be leaving behind for generations to come,” she says.
Dementia Australia’s executive director of advocacy and research Dr Kaele Stokes said both Anne and Edie have been amazing advocates.
“Anne and Edie have been invaluable contributors to the work that Dementia Australia does in raising awareness of dementia and also promoting inclusiveness and the abilities of people living with dementia and their families and carers to remain connected to their communities.”
Anne says she continues to be inspired by her partner.
As well as working hard to make Ballarat more dementia-friendly, she says she’ll continue to work to reduce the stigma around dementia.
“As her dementia advances I don’t want Edie to be hidden away,” she says. “I don’t want her to be just another statistic.”
“She’s a real person, she has dementia, but she’s somebody who has much to give others.”
Anne says she wishes people would continue to treat others living with dementia as regular people.
“I think if we focus on what the person has rather than what they’ve lost, that helps a lot.”
“I know that right until the very end I have no doubt that Edie will still know me.
“She won’t know the context, she won’t know what she used to know, but she knows that I’m special.”
If you suspect someone close to you may be showing signs of dementia, Dementia Australia encourages you to call the National Dementia Helpline for advice on how you can help: 1800 100 500
Readers seeking support with mental health can contact Beyond Blue on 1300 22 4636. More information is available at Beyond Blue.org.au
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