Dementia Advocates Anne and Edie share their story for Pride Month

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Anne and Edie smiling and watching somebody speak

The following story has been provided by Anne Tudor.

Edie and I first met through a mutual gay friend, someone I grew up with, in 1974, we and our friends partied well and Edie and I got to know each other over a period 10 years. As luck would have it, friendship unexpectedly turned to intimacy in1984. This August we celebrate 36 years together and, though the foundations were strong, the depth and breadth of our love I never imagined possible. The alchemy was the result of our shared values and interests as well as our differences. We continually, and not easily, learned different ways of thinking, perceiving and understanding ourselves, each other and the world around us. Our minds and worlds expanded and the rewards rich and reinforcing.

Younger onset dementia came at a time when we were at the pinnacle of our lives, had careers we loved, the forever home, a beautiful garden, gorgeous pets, strong family and friendship networks and much expected joy ahead. It took a while to adjust but as we were both naturally inclined to looking positively ahead, valuing what we had and what we wanted our future lives to be, this most unwelcome of diseases was not going to permitted define us or determine our path ahead. Our love of travel, social interaction and action would not be assuaged and the time taken over many years, to build and nurture our by now treasured relationship, simply brought us closer and deepened our love for each other. Edie said that dementia had helped us to grow “Bigger Hearts” and referred to us “Team Formidable”. Some people and things became less important in our lives, others more important. Some in our circle disappeared. We became advocates for others impacted by dementia and worked at living positively and with meaning.

We have found this dreadful disease neutralises judgements others may have had about race, creed or sexuality. It is the common experience that binds and connects us, the hideousness of dementia, our humanness and humanity, devotion to our loved one, mutual respect and care for fellow travellers. If you work as a paid carer or volunteer you need to be able to see the person in front of you without judgment. If the quality of your care is effected by a person’s sexuality, find another outlet for your time and effort. On two occasions, we have had elderly men come to us at different presentations in different locations and said that they had changed their minds about same sex couples. People sometimes have distorted views from childhood that have remained unchallenged. By getting to know another person who is different to you and seeing life through their eyes, it becomes easier to suspend judgement. The problem about judgement does not reside in the LGBTI person, they have spent a lifetime fitting in and accommodating the world around them, often with decades of discrimination, aggression and ridicule.

It is a great comfort to me to feel free and safe in Edie’s residential care home, to hold hands and hug and kiss Edie as other couples do. What others take for granted, people from the LGBTI community don’t; we are well practised scanners of a room, detecting negative reactions, reading eyes and minds. Families of residents I have spoken to have been surprised that I would have concerns about normal physical expression of love they take for granted. Edie naturally has none of these concerns or inhibitions, she lives and loves and acts spontaneously. I am so grateful for that and that Edie’s carers are comfortable enough in their own skin to happily give her hugs as well. Support for LGBTI residents in care is offered by the Out and About Program at Switchboard, [email protected] Volunteers are recruited from the LBGTI community, trained in Edie’s case, in dementia, police checked and matched to a resident to provide support, company and stimulation. It’s a wonderful program for our LGBTI brothers and sisters.

We were deeply challenged during the period of Edie’s transition into residential care, then five months later Melvin, Edie’s Dementia Assist Dog, lovingly known as Mr Velvet Ears, and I were involved in a high-speed motor vehicle accident. I had never had such injuries, been as vulnerable or as dependent before. The anxiety of not knowing whether Melvin would recover and return home to us was a great fear. The support that came our way was extraordinary – friends from our LGBTI community, Edie’s residential care staff, our dementia community, family and friends. It was an amazing experience of generosity and kindness of others at a time of great need.

Edie and I were two independent, confident and competent people before dementia entered our lives in 2010. We had no need to ask for help in our day to day lives until then; we didn’t need to trust in others so much, or rely on them to help resolve a problem or deal with any issue. We were used to being able to work through things together and find a way. But dementia imposes a changed reality, turns your life upside down and you find that you have a choice to reach out for help and support or to continue as you did before. We soon learned the necessity of looking beyond ourselves, experiencing the value and advantages in living interdependently, of meeting some remarkable people and our lives have been the better for it.

Dementia Australia also thanks Anne and Edie for their amazing work with the Bigger Hearts Dementia Alliance in Ballarat. Anne and Edie have been the driving force behind the alliance, which is working to make Ballarat more dementia-friendly including the establishment of the dementia-friendly trail in the Woowookarung Regional Park. Watch the video here:

During June, Dementia Australia is sharing stories of LGBTI Dementia Australia Dementia Advocates as part of Pride Month. We thank all amazing, diverse and committed Dementia Advocates for their ongoing support.