This Body is Bullshit

Since we got my dad’s diagnosis—FTD—I can’t shut my brain off. The questions are endless, and the answers are few and far between. Doctors take forever to respond, and when we’re actually in the room with them, my dad hijacks the appointment. He tells stories, cracks jokes, makes light of everything. That’s just who he is. But it means we leave without the clarity we desperately need.

What side of his brain is more damaged—behavioral, physical, verbal? Because it feels like all of it. What specific type of FTD does he have? What stage is he in? How long has this actually been going on—years, probably—and how fast is it going to get worse? Because it seems like it’s accelerating now. What does life expectancy even look like anymore?

The scariest part is that he doesn’t know he has it. He doesn’t realize what’s going on. Watching him spin the truth into jokes or denial doesn’t make it easier. When he got lost and we tried to gently point it out, he said, “I’m not lost. I just don’t know where I am.” Lost is a trigger word for him. It makes him flip out. Do you know how heartbreaking and terrifying it is to watch someone be unable to comprehend what’s happening to them? He still clings to the fact that he was once a pilot—as if that alone means he could never get lost.

The doctor told him to try puzzles or brain exercises. He asked instead if he could do home projects and trim work. The answer was no. The doctor said to ease up on power tools, and Dad thought he was nuts. But the truth is, he hasn’t been able to finish projects in a long time—his measurements and angles are always off. He blames the tools, the wood, anything but himself. The doctor said one or two drinks occasionally; Dad wants his drinks daily.

If it were up to me, I’d take the alcohol out of the house and the car keys away. But Kathy’s the one living this every day, and I want to support her. She’s terrified that if he really understood how bad things are, he’d talk about not wanting to live anymore. And she might be right. Would he act on it? I don’t know. That’s the nightmare of this disease—it doesn’t just wreck the person with it, it leaves the crushing weight on everyone who loves them. We’re the ones making the impossible choices, while he doesn’t even understand what’s happening.

I want to sit down with him, tell him plainly what’s happening, tell him we’re only trying to keep him safe. But everyone says he wouldn’t understand. And I don’t get that. How can he not comprehend what we’re saying, what’s happening around him? It’s impossible to wrap your head around. He’s so difficult and exhausting—but at the same time, still sweet, still sensitive, still emotional.

And it’s bleeding into everything else. I’m not sleeping. I wake up with this ache in my chest—part heartbreak, part anxiety. I drag myself through work, trying to show up for everyone else’s problems when my own feel so heavy. It’s draining. On the worst days, like this week, I feel out of sorts, like I could crack open at any moment.

I’ve even thought about FMLA for me. I’ve used it before—for surgeries, for Dad’s appointments. But now, when I see employees take it for anxiety, depression, or just needing a break—I get it. I really do. Maybe I need that too. Because I can’t just keep piling more and more on myself without some kind of release valve.

And tonight, after all this, I’m heading to a wake. My girlfriend lost her dad after years of caring for him after multiple strokes. I don’t know how she did it. I barely feel like I can manage my life, let alone that.

I hate this disease. I hate what it’s stealing from him. And I hate the way it’s bleeding into every corner of my life.

But this is where we are. And I’m trying to hold it all—grief, anger, exhaustion, love—in the same tired body.