FTD can distort one’s personality and behavior in unpredictable and upsetting ways, and it can be hard to remember who they were. But often, the “true” self of the person diagnosed – their interests, mannerisms, quirks, and passions – remain intact, albeit deeply buried. Journalist and writer Alison McCook wrote the following essay for Help & Hope about finding ways to connect with her late father through early memories and his favorite things.

My father lived with frontotemporal dementia for at least ten years, and as his primary caregiver, I got through it by meeting him where he was. Which for me meant meeting him as who he was.

I couldn’t picture the dad he was “before” — when he could talk, walk, and joke around with me. I could only think about the dad who was in front of me — even if all he cared about was his favorite movie (an ‘80s Western we watched a thousand times), Diet Coke, and chocolate-covered donuts.

I know why I did this: imagining the dad he used to be would remind me of everything he had lost, which was too painful to think about. I didn’t have time to be sad in that way. I was busy keeping up with his bills, arranging caregivers for him, and making sure he was comfortable — watching old Westerns with donuts and Diet Coke.

This was a good strategy. I kept things going, I kept him safe and comfortable, and I didn’t have a breakdown in front of him when his personality changed so much that he would scream at me over the slightest thing. But while his behavioral changes were often upsetting, they were never extreme; he didn’t hit anyone with his car or give away his savings to a scam artist. We were lucky.

The one problem with the strategy was that, when he died, I could only remember him when he was sick. And that wasn’t him at all — it was his FTD. The man who had died was nothing like the man who had lived.

At his funeral, I could barely think of anything to say about him. This was a surprise to me, as he’d had so many close calls from various hospitalizations and infections over the years that it felt like he’d already died several times. Shouldn’t I have been prepared for his funeral by that point?

So, I stumbled through a short speech; I tried to remind people that he used to be really funny, but I couldn’t remember any of his jokes. He told lots of stories, I said, even though I couldn’t remember any of them, nor the trips we’d taken, or the things that made him unique. I was his only family, and I could barely think of anything to say.

Later, I understood why — that survival strategy that got me through taking care of someone with FTD had wiped out my memories of who he was before the diagnosis. What’s more, learning that it could have started in his 40s — when I was still in middle school — made me think that I never really knew him at all. What if the dad I’d known as a child wasn’t the “real” man either? What if the only dad I could remember was the dad with FTD?

Father vs. FTD

For a long time, I beat myself up over how little I said at my father’s funeral. I know some people in the throes of grief manage to string together an eloquent speech with amazing anecdotes that, for a few minutes, bring the person back to life for the people gathered to celebrate them. But that wasn’t me. I wasn’t able to do that.

I keep trying to remind myself that it’s okay if I can’t make a beautiful speech after my dad died. And I tell myself that I couldn’t jump back in time to conjure up the dad I knew “before,” because I had put everything I had into being with and helping the dad I knew now. That’s what I needed to do to take care of him, to show up every day and not lose it.

My dad’s been gone for two and a half years now, and some of the early memories are coming back. Next to my computer, near my line of sight, I’ve placed a photograph taken of the two of us when I was probably eight or nine years old, when we were bored and felt like wearing silly clothes. I still can’t remember that dad really well, but I know he existed. I know there was a time when it was his job to take care of me, not the other way around. When he knew more facts than I did, tutored me in eighth grade geometry so I could move up to the advanced class, and taught me how to drive. When we could make up silly games because we were bored.

I force myself, too, to talk to my daughter about my dad. She is nine years old, so she only knew him as someone who was sick, whose brain didn’t work well (which is how I explained it to her). If the ‘80s Australian band Men at Work comes on the radio, I turn it up. “This was one of his favorites,” I tell her. In the days after he died, she and I watched some of his favorite movies, too. (The Wedding Singer was a hit.)

At least once a day, I look at that picture of him and me together when I was a kid. All of this is my version of a daily affirmation, a deliberate intention to shift my memory of my dad to what he was before. He didn’t used to scream at me over every little thing, or try to hurt the people who were there to help him, or scare his granddaughter. He was silly, and smart, and sometimes even sweet. Don’t remember? Just look at that picture, listen to that song, watch that movie. He’s in there, still, just waiting for me to find him again.