Learning to Grieve

My dad is dying.

In some universal sense I always knew I would have to say that at some point in my life, but it feels different when I’m actually facing it. I mean, parents live forever in a way that normal human beings don’t, right? No? Oh. Anyway, my dad has a rare neurological disorder called PSP (progressive supranuclear palsy) that often presents like Parkinsons but it specifically deteriorates body and eye movement, and there’s no treatment or medication. Eventually people with this disease can’t breathe or swallow properly, and cannot walk or control the body’s movements properly. It’s not something I want my dad, or anyone, to go through, especially when we’re forced to face the end of his life approaching rapidly.

Grief is an odd beast. Sure there are stages of grief, but no one tells you about how you can grieve for someone who is still alive. My dad was my comic relief in life. He entertained my weird ideas more than any other human ever would (or probably should). I have cassettes of us on road trips going to visit my brother in college, and while talking on the tape, I suddenly break into a gameshow host impression.

I say, “Hi ma’am, I’m Dr. Gameshow! We’re glad you came on the show today, tell us a little about yourself,” and I pointed the recorder at my mom.

She says, “What in the world are you talking about? What show?”

I say, “Okay, thanks for being here. Sir would you like to tell us a little about yourself before we start the game?”

Without missing a beat my dad says, “Hi Dr. Gameshow. Yes, my name is Bob, I have three kids and a pet bear, and I’m really happy to be here.”

I say, using a Minnesota/North Dakota accent for some reason, “They-ah-t’s great sir. Doncha know, we’ve got some killer prizes on the show today. Your pet bear will be so gee golly thrilled to see you after ya win these gosh durn prizes!” We proceded to put on an entire gameshow, complete with me cutting to my mom periodically, who consistently refused to be weird with us. Then when the joke ran its course we just went back to driving like nothing had happened. That recording is on a micro cassette and I almost didn’t play it, fearing I would break it, seeing as it was about 27 years old. But it held up and I’m so happy I got to hear it again and hold onto that memory.

It’s hard watching this disease take my dad from that person who could run with whatever I threw at him as a kid and even as an adult to someone who can no longer get himself around the house or focus on an entire conversation. He has days when he can’t get himself to the bathroom and back, and he used to be able to dismantle a broken toilet, rewire an electrical outlet, repair drywall, and almost everything in between at a moment’s notice.

Mentally, he’s the same man he always was, and that’s the hardest part of this disease to deal with. His body is failing him, and it affects every part of his life. It affects what he’s able to eat, how he sits, his sleep schedule, how much energy he has/doesn’t have, how he talks to people/can’t talk to people, how his daughter, who at age 5 he used to help to the bathroom in the middle of the night because she was scared to leave her room, has to help him to and from the bathroom. Physical illness affects mental and emotional health, always. He’s depressed and anxious for the first time in his life. It’s understandable, but it’s difficult to watch him go through this, especially when he seems just a little different every time I see him. We still have our rapport though, even if it’s modified now. Our conversations go something like this:

Dad:  How does blue tooth work?

Me: You have to pair something with something else and they talk to each other. I’m really not good at technology questions.

Dad: Don’t sell yourself short! You’re great!

Me: Okay fine, I just don’t like teaching technology to old people.

Dad: Well who does? Now how do I turn on the internet?

Me: No.

Dad: Hmmmmmmm…

Grief for a parent is a unique grief, especially when you start grieving a parent while they’re still alive. Because the disease seems to progress slightly every time I see him, he has new challenges every week. Every week it feels like the grief stage cycle starts over anew. But he’s the one telling me that I inspire him. He says that watching me struggle with type 1 diabetes and depression over the years, seeing how I pushed through and worked hard to accomplish things in my life has helped him realize that he can handle living with this disease. He even told me that he was always intimidated by me, even as a kid, because I was always so strong. He’s the one telling me this! It’s just so discouraging to know that he’s getting worse and suffering and there’s absolutely nothing I can do about it. But seeing that he’s still able to smile and be funny, and knowing that somehow, just by being myself, I was able to help him takes the edge off a tiny bit.

It’s not about me, though, or making me feel better. It’s just a type of grief I’ve never known before. The stages of grief are real and true and all that, but they do not go in order. I have days where I snap-to in the middle of whatever I’m doing, and I’m not sure what’s real or what isn’t. Like the seconds after waking from a dream, but I could be in the middle of a conversation with someone, or driving, or walking the dog. I still don’t really understand grief other than to know that it’s constant, and that it’s a strain on my already tenuous mental health.

That’s not to say that I’d change anything, though. I’ve realized how precious the time I have left with my dad really is. Even if we can only say a few words to each other, or even if the only time I see him that day is to help him into his pants. There will be a day sooner than anyone (except him) wants when I won’t have the chance to do that anymore, so I will be honored to spend whatever time I have with him.


6 thoughts on “Learning to Grieve

  1. ❤️ I am so sorry for you both. Adulting sucks.

    Get that microcasette saved over to digital!

    That photo is amazing.

    1. I’m proud of you for not avoiding this and for being responsible and getting this time with your dad. I’m sorry you’re all going through this.

  2. I feel so out of touch with how you guys are doing down there. I knew your dad’s health was declining, but I didn’t realize how bad it had gotten. Your description of your dad in the early years is exactly how I still envision him. He has always been my favorite uncle (I hope Rob isn’t reading this). He gave me my first computer back in 1984, which really defined the course for my life more than any other single event. I’m sad that I may not get to enjoy his humor myself again. Enjoy every day you have left with him!

    1. He’s still that guy and always will be 🙂 I will let him know you remember him fondly and it will make him happy. Thank you for reading and for your comment! Love you guys!

  3. I love and hate this blog at the same time. But thank you for posting it, Allison.

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