This Body is Bullshit

I Just Don’t Know Where I Am

We have the diagnosis now. FTD — frontotemporal dementia. And somehow having the name makes it worse, not better, because now I’m drowning in questions nobody is answering fast enough.

What specific type does he have? What side of the brain is most affected — is this primarily behavioral or is there physical progression coming too? What stage is he in? Because I think this has been going on for years and we’ve just been explaining it away — his hearing, his lack of interest, the things we told ourselves were just him getting older. How long has it actually been? And how fast is it going to move from here, because it feels like it’s accelerating. What does life expectancy look like now?

The appointments are impossible. My dad takes over the room — stories, jokes, nothing serious, never serious — and by the time the doctor gets a word in there’s no time left for the real questions. We’re waiting to get back in with the social worker. Until then we’re just trying to survive it day by day and I don’t know what I’m doing.

He doesn’t know he has it. That’s the part I can’t get past.

He got lost recently — drove somewhere and couldn’t find his way back — and when we tried to gently bring it up, he said: I’m not lost. I just don’t know where I am.

I’ve been thinking about that sentence ever since. Because on one level it’s heartbreaking. And on another level it’s exactly the disease — he genuinely doesn’t see the gap between those two things. Lost is a trigger word for him anyway. Say it and he flips. He was a pilot once, and he still clings to that like proof that he could never be someone who gets lost. The version of himself he carries around in his head is decades old and he has no idea.

The doctor suggested puzzles or brain exercises. My dad asked if he could do home projects and trim work instead. The doctor said to ease up on power tools. My dad thought he was out of his mind. But the truth is he hasn’t been able to finish a project in a long time — measurements off, angles wrong, nothing quite right — and he blames the tools, the wood, the instructions, anyone and anything but himself. The doctor said one or two drinks occasionally. My dad wants his drinks daily and sees no reason why not.

If it were up to me I’d take the alcohol out of the house and the car keys off the counter. But Kathy is the one living this every single day and I want to support her, not override her. She’s terrified that if he really understood how bad things are he’d say he doesn’t want to live anymore. She might be right. He’d probably say something like that. Would he act on it? I don’t know. That’s the nightmare inside the nightmare — we can’t even have that conversation clearly because he can’t hold onto it. The weight of all the decisions lands entirely on us while he doesn’t even know there are decisions being made.

I want to sit down with him and just tell him plainly. This is what’s happening. We’re trying to keep you safe. We love you. But everyone says he won’t be able to hold onto it, that it won’t stick, that I’ll say it and an hour later it’ll be gone. And I can’t fully accept that. I keep thinking if I just find the right words, the right moment, the right way in. I know that’s probably not how this works. I know.

He’s still sweet though. Still sensitive and emotional in these moments that catch me off guard. Still makes me laugh sometimes. Both things are true and somehow that makes it harder.

I’m not sleeping. I wake up with that ache in my chest — part heartbreak, part anxiety — and I carry it into work where I spend all day managing everyone else’s problems. I’m an HR person. Feelings and crises are my job. And I’m doing it while barely holding my own together.

Tonight I’m going to a wake. My girlfriend just lost her dad after years of caring for him through multiple strokes. I don’t know how she did it. I can barely manage what I’m managing now and we’re still near the beginning of this.

I hate this disease. I hate what it’s taking from him and what it’s taking from us. I hate that there’s no treatment, no slowdown, nothing to fight with. I hate that he’ll never fully understand what’s happening to him and I hate that in some ways that might be a mercy.

I’m holding grief and anger and exhaustion and love all at the same time in the same tired body.

I don’t know how long I can keep doing that.

But I don’t really have a choice.