The couple desperate for marriage equality before Alzheimer's takes hold
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Version 0 of 1. Five years ago, the issue of marriage equality became all the more pressing for Anne Tudor and Edie Mayhew. While the couple of more than three decades believe the legalisation of same-sex marriage in Australia is inevitable within their lifetime, there is now an urgency to their hopes for that day to occur. Related: Greg Gould tells his fans: I'm gay and I'm backing marriage equality In early 2010 Mayhew was diagnosed with the most common type of younger onset dementia, Alzheimer’s disease, and was told she faced an ongoing deterioration of her memory and learning abilities. Now that Tudor, 65, and Mayhew, 64, have learned to accept and manage that diagnosis, the pair desperately hope they can marry before Mayhew forgets who Tudor, the love of her life, is. “We’ve known each other for 40 years, but I was in another relationship when we first met,” Tudor says. “When that relationship ended, Edie was on my doorstep. She didn’t muck around, and I just loved her. Neither of us have looked sideways at anybody else since.” This month the Coalition government decided against allowing its members a free vote on same sex marriage during the current parliamentary term. While the prime minister, Tony Abbott, has said he has no problem with anyone being gay, he opposes equal marriage. And although he remains open to a plebiscite or referendum on the issue should he win the next election, the attorney general, George Brandis, and other senior ministers have rejected that idea. And last week the former Labor prime minister Julia Gillard was widely criticised by equal marriage advocates for coming out in support of it two years after being in power, when she had the ability to do something about it. “We would love to get married, so we were really disappointed,” Tudor says. “But what can you expect from the current government? There was a recent post on Facebook about a couple, two guys in their 80s, and they had been together for something like 60 years, and they want to get married before they die and, you know, it’s just disgraceful that they can’t.” Tudor’s and Mayhew’s families wish the same for them, having always supported their relationship. “There was never any coming out, because my parents really wanted me to be in a relationship with Edie,” Tudor says. “They always told me they loved her like a daughter and they wanted to see a lot more of her. “For us, we don’t know the course of Edie’s illness but, generally speaking, [a person] with younger onset dementia does end up having to go into a nursing home with old people,” she says. Related: NSW Young Nationals endorse marriage equality and back conscience vote “And while we hope that doesn’t happen to Edie for a long time, we could still really enjoy a wedding if we were able to do it soon, we could dress up and Edie would still be able to enjoy it.” Mayhew is the more quiet and observational of the pair. “When she does have something to say, it’s always important,” Tudor says. On the issue of marriage, Mayhew quietly says: “Our wedding would be something that is fairly simple, but very meaningful to us both.” The couple believe shared values, a respect for the other’s independence, and a relationship built on trust have been key to their successful life together. These factors have also helped them to manage Mayhew’s diagnosis, which came when she was just 59 years old. But Tudor had her suspicions that Alzheimer’s, the same illness which had taken her mother from her, was afflicting Mayhew long before she was officially diagnosed. Having moved from Melbourne to Ballarat to care for her mother through the final years of the disease before she died in 2005, Tudor was all too familiar with the symptoms. It was she who encouraged Mayhew to go to the doctor to get tested. We could still really enjoy a wedding if we were able to do it soon, we could dress up and Edie would enjoy it Tudor remembers two moments in particular that made her really worried. The first was when, as was her routine on a Friday night, Mayhew phoned the local pizza store to order a large capricciosa for them to share. “What arrived was a small capricciosa,” Tudor says, shaking her head at the memory of it. “I said to her, ‘Why on earth would you order a small?’ and she said, ‘I wasn’t very hungry.’ “I realised I wasn’t there. I wasn’t there in her mind. So that was really bad.” The other alarming moment was a phone call to Tudor from their bank manager, asking why their credit card hadn’t been paid off for two months and reminding her it was due again. “I was confused because Edie always paid all the bills, she was wonderful at managing finances,” Tudor says. “I went into the study and into Edie’s desk, and there was a pile high with telephone bills and rates bills and statements overdue. And I thought, ‘They’ve been there for months.’ That’s when I began stepping things up, really urging her to get tested.” The early symptoms of dementia are often so subtle that to most people, they might look like the mishaps of anyone having a bad day or feeling a bit under the weather. Related: C'mon Aussie C'mon: the new poster boys for Australian marriage equality It is why family members of sufferers, who know the intricacies of their loved one’s behaviour better than most, are often better placed even than doctors to detect the earliest signs of disease and to advocate for testing. In younger onset Alzheimer’s in particular, which affects people as young as in their 30s, dementia is often the last thing healthcare providers look for in their patients, who in the early stages of the illness may suffer frustratingly vague symptoms such as mood changes, lethargy, misplacing objects and difficulty following directions. But early diagnosis is also crucial. It allows people time to learn about their diagnosis and plan ahead while still in an overall healthy condition, and to make explicit their wishes for treatment (though there is no curative treatment) and their future. “We went through an enormous sense of grief and loss, we had plans for our retirement and for travel which we had to reassess,” Tudor says. “But if you think of anybody that you know who’s had to face great adversity, most people rise to the occasion. Edie had to stop her work as a driving instructor, which she loved, and I began to wind back my work as a psychologist so that I could spend more time with her, and I have now retired as well. “You do a lot of work in those first couple of years after diagnosis, laying the foundations for the future, and I think what’s happened as a result is that each of us has grown as people.” Mayhew describes it by saying: “Our hearts are bigger.” Tuder agrees: “We’ve always had enormous respect for each other, and now that trust and respect is just enormous. “The way Edie is handling her dementia is extraordinary, in my view, and I try to match what I do to what she does, she says. In that sense, it’s brought out the best in us.” Related: The Guardian view on Australia and gay marriage: all out of step except Tony Abbott | Editorial The years since diagnosis have been busy. Mayhew and Tudor have renovated their home to make it easier for them to manage; they’ve travelled to China, Botswana and Vietnam, knowing such trips will become increasingly less likely as the illness progresses; and have become involved with Alzheimer’s Australia and younger onset dementia support groups. Marriage remains on their “to do” list. Later this month Mayhew will deliver a speech to the Let’s Talk About Sex conference in Melbourne, which will examine how relationships and intimacy develop and change with age. She will use the conference as an opportunity to raise awareness of younger onset dementia, which affects approximately 24,500 Australians, and to reflect on the elements of her relationship with Tudor which have made it so successful. “With my Alzheimer’s I don’t remember a lot of things, but I do know that the most important thing to me is our deep love for each other,” Mayhew says. “I can honestly say I have never felt more contented in my life. I don’t feel anger, or frustration, or fear or regret at all. I don’t have bad memories. I just feel love.” • Let’s Talk About Sex: Relationships and Intimacy as We Age, 8-9 September, Pullman on the Park, Melbourne, www.ltas2015.com |