Personal stories Posted 5 Oct

Let me be me – in conversation with Daithi

Daithi, originally from Ireland and now based in Belgium, is a strong advocate for the LGBTQ+ community. Living with dementia for the past 5 years, a sense of urgency is driving their need for better education and understanding of the care given to people with dementia from the LGBTQ+ community.

When I asked Daithi which pro nouns I should use, the response was:
“Thank-you for asking that, seriously, because no one ever asked me that when I was living in Ireland! I use He/Him and now, as part of both my dementia journey and gender journey, I am beginning to use They/Them. Much like the dementia journey I am on now, my gender identity is also a journey. I feel that I am somewhere in between male and female and now would identify as non-binary.”

Daithi admits himself that he “shouts loudly” on LGBTQ issues:
“…because it matters, I don’t have the luxury of time, waiting for baby steps to happen, I need help now, and I’m not the only one. There is a generation who were criminalized for queer behaviours, men and women in prison as a result. Many of these people are in their 60’s, 70’s, 80’s now and starting to be impacted by brain issues.”

“These people can be particularly sensitive when it comes to care and the language it involves. For example, talking about family, the word family, as if it were only a heterosexual nuclear family expression, when in fact, family is anyone who comes together to love and care for each other, it is not only a function of biology. I have my rainbow family; I do not want to be cared for in a heteronormative way. I came into this world queer, and I want to leave it queer.”

They suggest this YouTube interview with Phil Harper, an associate lecturer in dementia care, who explains hetronormativity in care homes.

Daithi continues:
“With my dementia diagnosis and living with cancer, there is a sense of urgency. As I’m losing my capacity for rational thought (if I ever had it!), I want to make damn certain I’m surrounded by people, by carers, who get me at my core.
Sometimes well-intentioned people say ‘we treat everyone the same’ – No, wrong answer! You will not treat me the same as a middle-class, cis gender, heterosexual. That has not been my lived experience and I don’t want or deserve it to be my experience at the end of my life. I need person centred care and if you need to do a little cultural learning and homework to provide that, then that is what you need to do.”

“We have the LGBTQ+ Dementia Advisory Group, and there are other groups popping up across the UK, in fact I know my friend Howard has recently started one in Sheffield. These are hugely important and create that safe space for our community.

If you need any queer centric dementia resources, then the LGBTQ+ Dementia Advisory Group website is the go to place.”

“All I’m looking for, is to let me be me.

That’s it.

Let me be the orchestrator of the end of my life. I don’t want the church, the medical community, the legal community to tell me how to do it. Person centred care, make sure that the person is at the centre of that care. You don’t have to agree with or like the person and their ideas, but you must respect them”

“We, the LGBTQ+ community, need allies, and rock-hard allies, ones who get it. It is important to create visibility, allowing people to see someone from their community, that they can identify with. But it is more than that, it is putting the work in to ensure change, to ensure that people with dementia from LGBTQ+ communities feel safe and comfortable with the care and support they receive.”

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