And it feels like this might be the last normal one.
The five of us, Matt, Grace, Kathy, Dad, and me, are going out to dinner tonight. I’ve been fighting some upper respiratory bullshit for the past few days, trying to hold it together long enough to make it through the evening. I’m worried the bottom’s going to drop out at any minute.
What’s happening with him still feels surreal. Kathy and I talk a lot about the slow decline, about how there’s still so much of him there, which somehow makes it harder. Managing him, redirecting him, watching him struggle while still being mostly himself…it’s brutal. Not that I’d ever wish him further into this disease, but sometimes it feels like it might be easier once things are clearer. That’s a horrible thing to think. But it’s honest.
Years ago, when The Sister Project started their blog about their mom’s FTD diagnosis, I followed their journey closely. Michelle became almost a full-time caregiver. They had nursing help. They were able to buy her a place of her own. It was heartbreaking and remarkable and I never once thought we’d be here someday. I reached out to her recently. There are no answers. Just shared knowing.
Today, I want to celebrate him.
He’s a shell of the big, macho, tough guy I grew up idolizing. Now he’s a small old man who looks like the Lorax with the eyebrows and mustache, but without the belly or the orange. He’s sensitive. Anxious. Trying desperately to hide fear and confusion.
This is the same man who rode Harleys, worked construction, got into fights, and knocked people out. His claim to fame was making a citizen’s arrest of an attorney in Carbondale—handcuffs, duct tape, backseat of his car—driving him all the way to Chicago where the police greeted both of them. My dad spent a night or two in jail, made the Sun Times, the evening news, and still technically has a felony kidnapping record.
Which is… hilarious.
If you ever called him stubborn, he’d act like you’d called him a cunt. Worst insult imaginable. He is stubborn. And vain. And an only child who’s been spoiled his entire life. He made it to 84, outliving both of his parents by over a decade. He tried hard in life. His intentions were always good, even when things didn’t work out. And except for Kathy(he absolutely hit the jackpot with her) so much didn’t.
I don’t know what this year will bring for him. I just hope he always knows who I am.
And if someday he doesn’t, like my friend Tricia says about her mom, maybe he’ll still know that he loves us. And maybe that has to be enough.
Kathy and I keep wondering how long this has really been going on. FTD is usually diagnosed in people under 60. He’s 84. Could this have been unfolding for 25 years? Honestly… maybe. Looking back, there were signs.
I dread the day he can’t take care of himself or understand what’s happening. He’d be devastated. He’s too proud. He never wanted to be a burden. Sometimes I even think he might be lucky enough not to wake up one day because living fully aware of what’s coming would destroy him.
Losing him is already happening in pieces. And like Donna and Tammy, I’m realizing how strange it’s going to be to exist without parents. I’m incredibly lucky to have amazing stepparents but it’s still a reckoning.
I think about my mom a lot too. Our relationship was complicated. I know she loved me with everything she had, and she loved Grace even more. But it was hard. I loved her, but I was often frustrated and hurt. That wasn’t all her fault. I wasn’t easy either. And now, as a parent to an adult daughter, I see how anxious and worried she must have been. I probably shaved years off her life.
She didn’t take care of herself at the end. I miss her. And I wish I hadn’t gotten angry about things that were beyond her control. It probably didn’t help that I was always such a daddy’s girl – putting him on a pedestal.
If I could tell her one more thing, it would be this:
I love you,
I forgive you.
I’m sorry.
Tonight and for however much time we have left I’ll celebrate my dad. I’ll listen for that wheezy laugh. Watch his eyes close when he smiles.
Cheers to 84, my maniac dad.
Love you, old man.