Edie Mayhew and Anne Tudor celebrate 33 years together with family and friends in a Recommitment Ceremony in September 2017, before marrying at their first chance when it became legal in January 2018. (Photo: Courtesy Anne Tudor).
Edie Mayhew and Anne Tudor celebrate 33 years together with family and friends in a Recommitment Ceremony in September 2017, before marrying at their first chance when it became legal in January 2018. (Photo: Courtesy Anne Tudor).

Aged care’s challenge to break diversity barriers

DO PEOPLE who identify as LGBTIQ* need or want their own distinct aged care?

It seemed a reasonable question when the press release arrived late last year announcing Arcare had opened Queensland's first aged care home for LGBTIQ clients at Parkwood on the Gold Coast.

But research and talking to people affected makes the answer clear - they deserve that choice.

The first clue should have been that the press release hailed the opening as occurring less than 30 years after Queensland decriminalised homosexuality.

Because how does someone who has spent the greater part of their life being vilified, forced to hide part of who they are, facing possible jail or electric shock "cure/conversion treatments" for their sexuality, find a community they trust in which to grow old?

How can they be themselves without fear, form friendships and have confidence that they or their loved one are receiving quality health care as they age?

The Federal Government has recognised in its LGBTIQ Inclusion and Awareness in Aged Care report that to understand people's current experiences, including reticence to disclose sexuality or to enter aged care, and higher levels of anxiety, depression and suicidal ideation, we have to understand their past.

 

Edie at her best to enjoy the world premiere of Mr Velvet Ears in Ballarat with Anne.
Edie at her best to enjoy the world premiere of Mr Velvet Ears in Ballarat with Anne.

 

LOVE, LIFE AND DEMENTIA: A PERSONAL ACCOUNT

It can be as simple, Anne Tudor explained, as feeling comfortable to hug, kiss or hold hands with a loved one - things heterosexual couples take for granted.

It doesn't seem much to ask, especially given the heartbreaking position in which Anne has found herself and partner Edie Mayhew.

The couple have traced Edie's dementia journey in film, and have followed her into residential care showing the pain of separation in the recently released film Mr Velvet Ears.

The title is a reference to Edie's much-loved care dog, through whose eyes the transition is depicted.

"I miss her brain, her mind, her conversation; I miss her strength," Anne said of Edie, who was diagnosed in 2010 at age 59 with dementia.

She describes the film as "very raw and honest", filmed on the day of the move, the day before and again three months after Edie went into residential care.

"We have always been motivated to educate people around dementia, and to encourage people to open their hearts and not be frightened of it, although it is a terrible disease," Anne said.

"The person you love is still there, but in a changed way.

"We had eight years living together after Edie's diagnosis, and our lives haven't finished yet, so it's about presenting a positive message because there aren't enough of those out there."

She hopes the film opens discussions about aspects of dementia care for the LGBTIQ community and the community in general.

"Ours is a beautiful story and we are really lucky to have had such a wonderful relationship," Anne said.

This is the couple's fourth film, with Anne and Edie previously celebrating their 33rd anniversary, including their recommitment ceremony on September 2017 in a film called The Circle of Love for the Victorian Seniors Festival.

"When we got together 33 years ago we kept it pretty quiet," Anne said of the ceremony.

"It was a very different world back then - you didn't tell people you were lesbian.

"We were in love - but we've never formally celebrated our love with family and friends because we didn't feel it was OK to do so.

"Now that time is running out for us we want to celebrate with the people we love."

When two months later Australia voted yes to marriage equality, the pair decided to marry on the first day possible - January 9, 2018.

"It was the last piece in the fabric of our life - getting married was something we had talked about for years and it was acceptance of a changed reality and a moment in history," Anne said.

"And to me it was a statement - it didn't legitimise our relationship, we didn't need that, but it gives us a legal status so I can't be overlooked in Edie's care.

"Those that have had access to marriage for ever don't appreciate its meaning for people who have had a lifetime together and shared their love but not been able to declare it publicly or have the legal rights associated with it."

 

The crowd ready for the film to begin, with a shot of Mr Velvet Ears himself, Melvin, with Edie and Anne.
The crowd ready for the film to begin, with a shot of Mr Velvet Ears himself, Melvin, with Edie and Anne.

 

THE SEARCH FOR INCLUSIVE CARE

Things have changed a lot for Anne and Edie since then and, in September 2018, Anne said it became clear she couldn't cope alone with Edie's care anymore.

She had a lot of questions in her search to find the best residential care, including LGBTIQ training for staff.

Ultimately they decided on Mercy Place, where the CEO told Anne at the inspection: "I'd like you to treat this as your home too.''

"We felt totally embraced and accepted for who we are," Anne said, despite the home not being specifically for LGBTIQ residents.

Aged care and nursing home staff everywhere should now all have LGBTIQ training, and can work towards achieving a Silver Rainbow tick.

But Anne said more education and attitudinal change was needed to ensure that workers from the CEO to the nursing, kitchen, garden, cleaning and admin staff put into practice those policies of acceptance.

Ensuring those attitudes are also passed on to other residents is another matter, with a government report finding LGBTIQ residents have been bullied and physically abused by fellow residents.

 

CHANGING ATTITUDES

Dr Catherine Barrett, who has worked on the films with Anne and Edie, was a finalist for the 2018 Human Rights Medal for her work advocating for older Australians, including the LGBTIQ community and people with dementia.

She said while ultimately we need all services to be LGBTIQ friendly, it will take a lot to overcome old fears and cultural stereotypes, or partial acceptance that "it's OK to be gay, but not that gay".

For that reason, she said, having the option of a specific LGBTIQ service such as that at Parkwood, as well as inclusivity and acceptance within mainstream aged care, were both equally important.

The Mr Velvet Ears trailer, full film and resources, and the couple's other films, are available at www.museumoflove .com.au/pulse.html. For other LGBTIQ Seniors films go to https://alicesgarage.net.

Find more on LGBTIQ health at https://lgbtihealth.org.au/, on dementia at www.dementia.org.au, on Arcare Parkwood at https://arcare.com.au/parkwood/ or, if this has raised issues for you, phone Lifeline on 13 11 14.

 

HELP AT HAND

As part of the implementation of the LGBTI Strategy, the Federal Government, in partnership with various LGBTI advocacy and support agencies, has compiled a collection of LGBTI-specific ageing and aged care resources for the LGBTI community, their loved ones, carers and aged care service providers.

For helpful tips about looking for aged care that caters to the LGBTIQ community, go to https://agedcare.health .gov.au/support-services/my-aged-care/lgbti-ageing-and-aged-care-resources.

* LGBTIQ stands for Lesbian, Gay, Bisexual, Transgender, Intersex, Queer or Questioning.


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