My way of letting off steam!

LGBTs and Dementia 1

Enter my world and largely the world of those of us who are in our 70s. Yes I know there are some of us who would say that they were never in the closet but for the most it wasn’t like that. We grew up in a world where newspapers and family chat assumed that being ‘gay’ belonged to others; to Piccadilly and Soho; to the secret bar and club; to comedians and theatre actors and actresses; but not to us.

At times there would be the odd scandal which would break out. Scout masters with their troops, choir masters with their choristers, peers or MPs with guardsmen, but that was them, not us. Not our family.

So what you knew was going on within you had to be kept firmly in its place. Perhaps those feelings might go away; perhaps it is a phase, some of us thought. Marriage might cure it. No point in talking about it to anyone, they might tell and then you would almost certainly lose your job.

The arrival of the wonderful world of gay rights and legislation protecting LGBTs was an enormous relief but the trauma of earlier years takes a lot of undoing. You might have relationships, friendships, and work situations which had all assumed a straight life and coming out to that lot takes time and, in some circumstances not a little courage. Better then to start a new life away from them all?

So we appreciated our new freedom but for many of us we were ‘out’ and ‘not out’ at the same time. Some of us might now fortunately be in LGBT relationships but we still carried with us the baggage of the repression of previous years. There might even be a fear that this new freedom might not last and our world might regress back into repression and the reports of homophobic violence were scary enough. So we learned to build defensive walls around ourselves so we could be safe and we could decide who would be allowed to know our secret.

Those are the experiences and feelings which LGBTs bring to the event of being diagnosed with dementia. Before you blandly trot out, ‘we treat everyone the same’, please understand what that news might mean to us – it could be different to your experience; but more about this next time.

Comments on: "LGBTs and Dementia 1" (3)

  1. Hi there. I’m a little younger than you (1951), living in Australia with my partner who was diagnosed with YOD (PPA/LPA) 18 months ago.

    Her experience as a lesbian living in Adelaide was similar to yours. Mine has been less “closeted”, no doubt because I lived in France in my 20s and in Sydney for most of my life.

    There’s an LGBTI YOD project happening here. When I find out more I’ll let you know.
    Find me on Facebook and Twitter : Lynda Henderson.

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    • Hello Lynda. It has taken me 3 hours to sort out this bloody blog page and at last I’ve done it. Apologies for the apparent rudeness in not replying.
      If you can, have a look at ‘Telling Tales About Dementia’. There are possibly some good chapters in it that you can identify with. Hope I can stay in touch in a better way now. Best wishes in your caring role.

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      • Thanks Roger. I’ve read your other chapters since and agree totally about the diversity of people living with dementia.

        Both Veda and I have been “out” for most of our lives. I’ve been thinking about how the dementia experience might differ for straight and LGBTI people, as the double “coming out” doesn’t apply to us.

        I agree that our concept of “family” is completely different: the language around dementia support mostly assumes a spouse, “your loved one”, children and/or grandchildren, etc. and this is alienating. I wonder too if some LGBTI people find that the family of the person living with dementia might descend on the partner in some cases, attempt to “resort” legal affairs while the person is still competent.

        I think that for us the main difference is that our “family” is extended, varied, with a whole lot of talents and skills between them that we can ask for as we need further support. Our community of friends does exist, not all disappear when the diagnosis is known (though some have) and those who stay start to really think about how and what they can personally contribute.

        I feel for LGBTI people who already live fairly isolated before their diagnosis and I don’t know how they can be reached other than through local support groups.

        Veda and I live in a small town of about 4, 000 people, close to larger towns and just 2 hours from Sydney. We have the best of both worlds, a nice country/city mix.

        I know that young LGBTI people in Australia often face hell in more remote areas and consequently try to move closer to strong LGBTI communities. We “baby boomers” and ex “city slickers” have it relatively easy by comparison.

        In our local area there are plenty of ultra conservative people whom we don’t want in our lives. We met a local couple recently, older than us it seems: she has dementia, a timid little thing, he obviously craves conversation, is very dominating of his wife and pushy towards us. He is determined to rope us into a local singing group that both of them attend. Veda was a professional rock/jazz musician and has an amazing voice but her reaction to the idea of joining this local choir was “I’d rather be dead”!!!

        Our solution to the issue of getting Veda to sing again is to catch up in Sydney with Veda’s old muso mates (lesbians all). I know our neighbour has no idea of why neither Veda nor I is interested in “activities” nor in spending time with people who are local, just because they too are living with dementia.

        We both presented recently to 40-50 local community “players”, to launch a dementia-friendly communities pilot. I think it would’ve been clear to most people there that we live together as more than companions though it wasn’t the place to focus on that. It came as a shock to most that Veda is relatively young, doesn’t have AD and is facing the huge and ever-changing disability of losing verbal language (she’s a songwriter too by the way).

        Perhaps by being doubly “out” in our community and on social media we may pick up a few isolated LGBTI people living with a dementia diagnosis who are going through the hell you described. Veda’s past celebrity may help dispel some of the stigma too (many people in Australia, now in their 50s-60s, remember the band).

        However, it took Veda 2 years to be prepared to go public with her diagnosis.

        I’d be glad of any comments. Cheers, Lynda.

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