A Daughter's Notebook: Notes from an Unprepared Daughter

I started writing this post at least 20 times. Sat down. Typed. Erased. Repeat. I’d leave a line on the screen for a while, only to erase it days later. I’ve had nothing to say and everything to say.

The past few weeks, I’ve acted like things were normal. I wake up, go to work, try to smile, try to laugh. I eat food. I drink coffee. I socialize with friends (kind of). I hold conversations. I’ve been pretty productive at work, actually. But in my mind, I’ve been waiting for the other shoe to drop, so to speak. When would “normal” end? Nothing is normal. Why am I pretending?

It’s raining today, a perfect reflection of how I’m feeling right now.

We transferred my dad’s care to his new doctor yesterday, one that’s closer to home. They did the same sorts of movement tests that I’ve watched at the last two neurology clinics, poking and prodding. Bend this, push here, can you feel this. I found myself tightening my core muscles, wondering how well I’d hold up to some of those tests — you lose those core muscles, you probably won’t do so well, even without the ALS diagnosis.

It was my sister’s first time watching those tests. It was my first time watching her face as she watched it. It was her first time watching our dad have to get undressed and perform for the doctors. Only this time, instead of a hospital gown, they had these little gray shorts for him to wear. Stylish, really. Comfortable. I joked that they’d probably charge us a clean $600 if we walked out the door with them simply because they were “medical” shorts.

After the poking and prodding, this doctor agreed with the ALS diagnosis. As if there had been any question, but I guess there had been. That momentary sliver of hope that he’d say something else felt kind of cruel. I wish he had never given us that. Because when he sat down and said he agreed with the diagnosis, it felt crushing all over again, albeit, not quite as bad.

And then we talked about the “what next” portion. The meds that won’t cure him but that might prolong his life a little. The fact that he’s still breathing well. The next steps of meeting the rest of his care team, because he’ll need a full-on care team for this disease.

“What’s your understanding of this disease?” the doctor asked.

My mind went blank, even though I’ve done all the reading. But my dad responded. I came back to the conversation for the part where he said, “And eventually I won’t be able to breathe and I’ll suffocate and choke and die.”

Matter o’ fact. Matter of fact. Factual. Accepting. There it is. Out in the open. I glance at my sister.

The doctor talks about breathing assistance. He talks about when that will start to be necessary (they don’t know). He talks about how eventually, you’ll extend the amount of time it’s being used, from overnight to some time during the day, to perhaps all the time. About balancing quality of life, of deciding if you want to use something that breathes for you all the time or if you want to go into hospice.

“We can make you comfortable. You go into hospice. You’re at home with your family when you pass. You don’t suffocate and choke. It shouldn’t be painful. I want you to know that we are here to make sure it’s not painful.”

Oh. This is what we’re talking about. Death. The end. Right now, here in this room. We are talking about my dad dying. And I understand the doctor’s intentions behind this conversation are to bring some comfort to my dad, that his end won’t be traumatic, that it can be comfortable. I can tell this information is comforting to him.

I can also tell you that I was unprepared.

I look at a spot on the wall. There’s a painting or portrait or edited piece of artwork from the Como Conservatory. The Reflection Pool. It’s kind of dark, the photo. Like when they use that blue filter in TV shows so it looks kind of gloomy or spooky.

We went home to have dinner at my parents’ house that night. We updated my mom and husband. Everyone was trying to be so normal. I guess because what else do you do? I’m not sure. But nothing feels right in the world now.