For World Alzheimer’s Month, Touchstone’s Co-production Lead for the Complex Rehabilitation Project, Tristan, has written a moving piece on his relationship with his Dad, who is living with dementia.
My Dad has Dementia. He was about 53 years old when he was diagnosed, I was devastated. I felt like my world was ending, when in fact it was just changing. Drastically changing, but not ending. I was around 22, and my Dad had always been my rock. Through my teenage years, through years of not getting on with my Mum, my drinking, my mental health decline, my Dad was my rock and he didn’t even know it.
My Dad was probably just about the smartest man I knew, and for certain the best teacher I knew. He was a secondary school Science teacher, and he taught me more sitting round the dinner table than any of my teachers ever managed. My Dad challenged my teachers. When my food tech teacher predicted me a B but I wanted an A, my Dad asked why (the answer was “[he] wants an A? Well then [he] must be getting an A”).
My Dad understood kids, he understood me. But he was fiery. It didn’t take much to set my Dad off, and you could see the redness rising up his face and over his mostly-bald head. But he could also laugh at himself. My Dad’s method of telling my brother and I off was to stare over his glasses at us. We knew what it meant. We never challenged him. Except for one day when we were stood in the hallway and he was staring us down. My brother shook his head and walked off, I followed. My Dad yelled “come back here, I haven’t finished staring at you yet!”. There was a moment of silence while we all processed what he’d said, before we all burst out laughing. My Dad has Dementia. My Dad still remembers this.
“The pressure to remember puts a wall up inside his head…”
When my Dad got his diagnosis, I was a domiciliary care worker. I was working with Dementia every single day, and I realised something. Those years of my Dad understanding me? It was my turn to understand him. My Mum didn’t understand him. There would be constant “why can’t you do this”, “do you remember?” The word “remember” was thrown around a lot. And every time it was said, I saw my Dad crumble a little bit. His shoulders drooped, his head sank, his face fell a little bit more. He looked sad. Deeply, deeply sad. Because he didn’t remember, and he knew he didn’t remember, and he knew he should remember, but he just didn’t.
And so, one day when my Dad wasn’t around, I confronted my Mum. “Mum,” I said. “Every time you ask Dad whether he remembers and he doesn’t, he gets a bit more sad. You need to stop it.” She didn’t understand. I gave her the booklets I had from work about Dementia and how to work well with people. She read them. She made gradual changes from “do you remember when we went to see the turtles?” to “we went to see the turtles”. And she noticed the difference. You see, my Dad can remember. But only when he’s not under pressure to remember. The pressure to remember puts a wall up inside his head and he can’t get past it. But if you tell him that something happened, he will recount stories to you about the time you’ve just mentioned.
And suddenly my Mum was less stressed, and my Dad was less sad, and they worked out how to make it work.
Coming out as transgender
My Dad’s dementia gets a little bit worse every time he has another stroke. Before April 2020, my Dad could tie his shoelaces. In April 2020, he forgot how to tie his shoelaces. In 2021, I came out to the world as transgender. In 2022, I came out to my Dad as transgender.
Something important to know is that with my Dad’s dementia, my Dad mellowed. He’s not fiery anymore, unless something really badly upsets him. He’s mellow and calm, his sense of humour is like a teenage boy who has just discovered rude words. He often misses jokes that we make, but he’ll make his own dirty jokes and we howl with laughter because of how out of the blue they are. But he’s calm, and tolerant, and open minded nowadays. Not like he used to be.
So when I came out to my Dad as transgender, I was scared. I was scared of how he would react, and I cried. I cried a lot. I overthought it, I panicked, I planned it to death. I knew what I was going to say and how and when I was going to say it. And when I did say it… It was not how I planned. But my Dad understood. He supported me, he loves me. “You made me more open minded than I used to be”, my Dad said. We talked about my name, but he struggled. He didn’t have any ideas other than “if you’d been born as a boy, we’d have called you Michael”. My cousin is called Michael. I made it my middle name (and I’ll admit here for the first time ever, I prefer it as a middle name to the one I picked myself).
But nothing seemed to change. I tried to accept that it was his dementia, but in the same sentence that my partner would use my name and pronouns, my Dad would use my old name and pronouns. He would refer to me and my partner as “the girls”, would answer the phone with my deadname, and nothing changed. For 2 months.
The day my whole family came together to bury my Mum’s ashes, we were sat around a table in a restaurant. My brother, who has known about my transition for over a year but never acknowledged it, turned to me out of the blue and said, “what do we call you nowadays?” My sister-in-law changed my name in her phone. My four-year-old niece now knows me as Uncle Tristan. I gave my Dad a copy of my deed poll for a legal document he was filling in. He was fine with it. I don’t know where it all came from, but it did.
“Dementia hasn’t taken my Dad away from me. But it has changed him.”
And now, my Dad doesn’t say any name when he answers the phone. He knows I’ve changed it, but he can’t remember what it is. He accepts me, he has no issues with people calling me “he”, but he doesn’t know how to do it himself. He’s stopped calling me and my partner “the girls”. He knows who people are referring to when they use my correct name. He knows how much better my mental health is now, and he supports me. But he can’t use my name.
Dementia hasn’t taken my Dad away from me. But it has changed him. Not all for the worse, but he has changed. And he is still my Dad.