Tony Walsh (left) with a picture of his partner Paul Wenn, who died last year. Photo: Joe ArmaoWhen Paul Wenn told his life partner Tony Walsh his doctor had suggested Paul should go to a memory clinic, they both had a good laugh.
But then Paul forgot to go. And when Tony realised he had slowly assumed all responsibility for running their household, they knew the changes in Paul were serious.
On the evening of the day Paul was diagnosed with Lewy Body dementia they went out for dinner and resolved to live fully, while it was still possible: they did15 cruises, international travel, no slowing down.
But eventually it was time to search out a LGBTI-friendly residential aged care facility for Paul, and live apart for the first time in 25 years.
Have you heard this one? When people get dementia, they “revert” to being straight.
It’s a homophobic myth, but it still gets trotted out by some aged care providers, say the first researchers to study the experiences of Australian lesbian, gay and transgender people with dementia.
The first facilities Tony and Paul looked at kept making excuses; Paul’s medications were too complicated, they were just about to undergo renovations, they only took “passive” dementia patients.
“Our ‘gaydar’ was going crazy, we just knew these places weren’t going to be very welcoming,” says Tony.
Older LGBTI people worry they will have to “re-enter the closet” if they go into aged care. Many still carry emotional scars from an era when revealing their sexual orientation or gender identity could mean arrest, imprisonment, psychiatric incarceration and attempted “cure” treatments.
But some people entering aged care also find their circumstances offer a newfound freedom, including one man who only felt safe to come out when he entered aged care, he told researchers.
Others encountered homophobia and ignorance from their carers, says Dr Catherine Barrett, the sexual health and ageing program co-ordinator at La Trobe, and co-author of a journal article on the topic in the Australian Journal of Dementia Care.
An older lesbian with dementia told researchers: “Sexuality is not a rinse colour you put through your hair. It’s fundamental … to who you are and how to you relate to other people.”
One patient transitioned from male to female 40 years earlier, but was forced by her children to enter a residential aged care facility as a man or run the risk of never seeing her grandchildren again. It was actually her carers who realised what had happened and were unsure what to do.
“Your sexual orientation or gender identity is more likely to be influenced by homophobic or transphobic ideas from family or the care setting, than dementia”, Dr Barrett says.
“But you do become reliant, and this could change your opportunity to have your relationship or gender identity recognised.”
Older LGBTI people should prepare their powers of attorney well in advance, and clearly document their gender preferences, she says.
Paul found a welcoming home at Uniting AgeWell Carnsworth Community in Kew, where the staff unquestioningly accepted Tony as his partner.
Some of the older residents were uncertain of their relationship, congratulating Tony on his dedication to visit his “brother”, a comment he brushed off with a laugh.
“All we wanted was to be treated as a normal couple – people like anyone else,” says Tony.
Paul died in 2014, 11 years after he was first diagnosed with dementia.
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