Posts Tagged → Caregiving

They always had chicken tenders and they weren’t great but they were hot and ready when a lot of other things weren’t

When someone you love is slowly dying, one thing no one really tells you about is just how much goddamned sitting around you have to do. Something like 75% of the whole shebang is time spent just sitting in a chair in a little room with the people you care about waiting for something bad to happen.

The other 25% of it is, based on my experience, forgetting to eat and then running down to the hostpital cafeteria before it closes to see if there are any chicken tenders left.

Anywho, there were a bunch of times in that room when I’d look up as if suddenly coming awake and see that, of the six or seven people squeezed in to be at Dad’s bedside, all of us were looking at our phones. Everyone except Dad, of course, who was busy with other matters.

It was surreal and … kind of horrifying. A definite, “My God, what have we become?” sort of moment.

I’m not pointing fingers at anyone or blaming anybody or any of that jazz. It’s just that I’m a teacher and I spend a lot of my day fighting to keep people off their phones so they can get some work done. These days, I have a sort-of conditioned response to seeing a room full of lowered heads and a bunch of tiny, glowing rectangles. I see how f*ing insidious our cellular masters are. I get angry about it.

In that room with Dad, I’d purposefully put my phone away and just sit. Not the whole time, but every now and again, when the urge hit me. It wasn’t meditation, but something akin to it, when I’d pick a sound or something and try to focus on it and just … exist in that room. Sometimes I counted seconds, sometimes I counted breaths, sometimes I counted the number of times the IV Dad was hooked up to made its little pumping noise. (It had to pump 4,000 times to go through one bag of IV fluid.)

Was it worth doing? Trying to “be in the moment” rather than scrolling? F*ck, I don’t know. It was hard not to be nihilistic or fatalistic when Dad was dying right there, to say to myself, “What is the point of anything?” and then mindlessly swipe through TikTok or Reddit. Take comfort where you can find it, right?

There have definitely been times when I’ve thought that the sort of distractions phones can give was a comfort. A blessing, even.

But we all know better.

Blogging about diseases is boring and sad but I need to remember these things so here we are

I haven’t been reading much. Well, I’m still reading a little, but I’m so preoccupied that in my off time I just veg out and either watch YouTube or TikTok. Still, I’ve gotten through Dungeon Crawler Carl and am currently working through the second book in the series, Carl’s Doomsday Scenario. I’m doing the print version and the audiobook (which is interestingly done).

The series is fine. I like the relative mindlessness of it. Blowing up goblins and punching monsters so hard they explode. There are some unique aspects to the plot structure that are worth examining on a serious level — I feel like the arc of the story is built to be understood from a macroscopic lens; characters will make more sense the more books you get into the story. It’s as if the author planned on writing hundreds of thousands of words and just thought, “We’ll get to it eventually.”

As a writer, I’m used to doing this stuff quickly — I’m borderline minimalist. “Get to it!” that’s my motto. Or, as Vonnegut puts it, “Start as close to the end as possible.” Don’t waste words; your readers’ time is valuable and you should use it well. Reading Carl reminds me how flexible these rules are, because there’s a lot of stuff I don’t get or simply wouldn’t do.

It’s unfathomable to me that we don’t have more information about Carl’s ex-girlfriend yet, even though you know she’s going to make an appearance (or be brought back up somehow.)

I’m also not a fan of giving readers actual numbers for strength and intelligence. This book will give each character a level and stats, all of which are explicitly told to readers. Is this why they’re calling it “LitRPG?” (Horrible, horrible name IMO. And maybe, overall, just a bad idea.)

Increases in ability should be shown through action not spreadsheets. The spreadsheets were only ever created for RPGs like D&D where you couldn’t easily show strength or intelligence through action. In a narrative, though, all we have is time to show how characters act. That’s the whole point of a story.

I will never read a sentence like, “My strength was at 30 so I was confident I could win the fight,” and think, “That’s some good writing!”

I know, I know, not everything needs to be literary. Besides my gripes at the LitRPG genre in general, Dungeon Crawler Carl has been fun so far.

Anywho.

My dad has a feeding tube installed in his stomach and is out of the hospital, but his condition doesn’t seem to be…improving, or at least not improving rapidly. While he’s glad to be home, he really doesn’t have a lot of energy. I don’t know if that’s from the cancer or if it’s from weeks of not being able to swallow due to the tumor in his esophagus (which is growing rapidly), but it isn’t a good sign.

Sarah, my brother, and I went down to visit yesterday. Dad was able to get up and move around, but not much. He can’t swallow anything at all and chews on ice like they have you do in the hospital. His headaches are getting bad. He has a big red bottle of hydrocodone you can inject in his feeding tube.

Radiation treatments start this Thursday and will continue for most of April. Chemo will start after that, depending on how the radiation goes.

A “home run” at this point isn’t a cure; a home run is shrinking the tumor in dad’s throat enough that he can swallow food. Not only will that make his quality of life much better, but being able to get more nutrition will be an added bonus. Dad loves eating and I hate thought of him missing out on food he enjoys in favor of the flavorless goop that goes right into his belly.

Time marches forward.

School continues. The ACTs are tomorrow and I get to proctor.

Sarcastic yay.

Thanks I hope so too

My dad is sick and I am a mess.

He was diagnosed with esophageal cancer a few weeks ago after a hurried trip to the ER when he started having difficulty swallowing. Scans revealed a tumor in his esophagus that prevented food from going down; more scans revealed that the cancer had spread. The prognosis is bad. Stage 4, likely inoperable.

I hate hate hate talking about it. Thinking about it is hard enough — I try to dumb myself down with substances in my off time specifically so I don’t have to dwell on it. Is this healthy? Not one bit. But I’m doing what I can to get through the day. Or, at least, that’s what I tell myself.

I’m at a point where I’ve started letting people at work know about what’s going on. Students are asking me about it; I missed school yesterday so I could go sit with dad while he waits to get a feeding tube put in, and today, first thing, I was met by a bunch of, “Where were you yesterday, teach?” (Students don’t really call me “teach,” but I’m hesitant to put my real name on here. I’d hate for my solitary reader to know who I am.)

This is what I assume you look like.

I don’t lie to students about stuff like this. It might be easier if I did, but this sort of thing is a part of life and there’s no use hiding from it. Plus, it isn’t as if people won’t notice something bad is happening. I probably look awful. Still, I won’t go advertising it because, again, I hate hate hate discussing it. When I have to talk about it, I try to sound as positive as I can to keep classes from turning into some kind of morose pity party.

So I smile and say, “Oh, my dad’s in the hospital and I wanted to drive down to be with him.” The conversation continues for a bit and, invariably, students say to me something like, “I hope your dad gets better soon!”

As much as I want to be truthful, I can’t exactly tell them that this isn’t the sort of cancer that gets cured. I pretend to be positive and, while it’s not technically the truth, I just tell students, “Thanks. I hope so, too!” in the most upbeat tone I can muster. It’s better than saying, “I don’t feel hope anymore,” which (unfortunately) is where my head is currently at.

Putting on this act is exhausting and It. Never. Stops. It’s so tiring that there are days when I don’t know if I can actually handle it. My body, like a house consumed by flames, will crumble in on itself in a pile of ash and smoke. “That was a nice old building,” couples will say as the amble by.

How do people do this? I have come remarkably close to losing it this week, and it’s only exacerbated by knowing that worse things are yet to come. Every time my phone rings or I get a text notification I immediately think, “This is it.” A memory will randomly make me feel like crying. I have to excuse myself from class every now and then just to get a moment alone to breathe.