Diary #16 (5-24-23)

The Cancer Diaries

Out on the deck at my folks’ house in Santa Barbara, where I write.

*From 3 days ago, 5/24/2023

Well holy shit, folks. Last night was an experience. As a former blackout alcoholic (sober since 2010, age 27), I never in my whole life thought I’d ever be the one taking care of my father, of all people, as he blacked out on drugs. But that’s exactly what happened last night.

Let me explain.

Yesterday I’d thought he was only on several doses of Morphine, but it turns out Mom had given him one milligram of Ativan (given to us by Hospice for anxiety) at 1pm. It lasts 10-20 hours. Yeah. Well, we discovered Ativan has side effects. And pretty intense ones. (I wish Hospice would have warned us of this.)

At some point in the afternoon, Dad started mumbling, slurring his speech, seeming confused. It harkened back to October 2021 and the following six months when his Myasthenia Gravis was terrible and he couldn’t speak clearly, his eyesight was shot, and he stopped swallowing. Sometime around 4 or 5pm while Mom and I were in our chairs in his room observing him we noticed he was starting to talk and then twitch in his sleep. Little muscle spasms, at first, his legs or feet jumping, his hands shaking, his arms jiggling. And he spoke out in random, anarchic fragmented speech patterns; we caught little snippets of random words, sentences, etc, which, when we asked him to clarify, he spoke gibberish or remained silent on.

About an hour before dusk this worsened all around. His hands really shook; his feet were kicking at times, and his arms sometimes reached out into the air, as if grasping for something which didn’t exist. I sometimes wondered, Is Dad reaching for The Light? Is this Dad in the terminal Death Throes? Is he going tonight? Does he see the Other Side?

Then new additions after dark, which were questionable and ominous: He kept holding his clear plastic oxygen mask—which is keeping him alive, literally—fanatically, like a toddler with a pacifier, and then pulling the mask off, holding it in his outstretched hands. We tried telling him to put his mask back on, asking him to place it back on his mouth, asking him why he was doing this, but he either didn’t respond at all, didn’t respond coherently, or tried to speak but it came out passionately garbled. It was a philosophical conundrum. One of us kept getting up, walking to the bed, and placing his mask back on. Sometimes he took it off for minutes at a time right after we’d put it back on.

There were also instances where he suddenly decided he wanted to “get up” and out of bed. Which he of course can no longer do. He’s on Day 6 of no food and he’s been getting minimal water. He’s thin, weak as a piece of construction paper. The last time he stood, to poop in the commode, days ago, he could barely manage it. He hasn’t left bed in days. He’s far too weak and high risk. And yet, last night he repeatedly tried to sit up in bed, move his legs off the edge, and perch with his legs off. Then he was going to “walk to the bathroom.” Each time I had to tell him NO and explain that he was bed-bound and too weak. Each time he gestured and spoke nonsense drugged gibberish. He seemed to speak his own secret language.

It was very odd, highly satirical, incredibly ironic: My father, my whole life a man of sober character and decisive commonsense, a drinker of beer and wine but never an alcoholic (although I had my theories), whose son had been a wild blackout drunk for a decade, ended up on his death bed being in a Hunter S. Thompson Ether-like Fear and Loathing in Las Vegas type of drugged-induced Fever Dream.

Mom was worried for multiple understandable reasons, not least of which was the fact that Dad kept removing his oxygen mask. He couldn’t be trusted in this state of mind. We’d Googled Ativan and, sure enough, it mentioned the symptoms he was experiencing, which by later in the night had become more like little mini-seizures, his whole body jumping and twitching and thrumming with erratic energy. It was like being in a Baptist Revival Ceremony. We’d given him no more Ativan, obviously, but more Morphine, hoping it’d calm him down. It sort of did. But not entirely. Mom even injected a little bit of cold coffee into his peg-tube, hoping perhaps some caffeine might jolt him off the drug.

So in the end we decided to stay up all night in shifts. It was just too risky to leave Dad alone. Mom did the first shift. It was around 10pm, I went downstairs and, exhausted, passed out quickly. I awoke at 1:15am. Groggy, I threw the bed covers off me and yawned, stepping up the wooden stairs and walked down the hall. Mom filled me in—more of the same—and she went to bed. I made hot English Breakfast tea with half n half. I read more of Lionel Shriver’s essay collection, Abominations, highlighting my favorite parts.

Dad was erratic all night: Reaching his hands out to nothing; speaking half-gibberish, half-fragmented sentences. At one point he’d said, The light is half male, half female. I’d wanted to say, As in like, binary light? But I’d resisted. Sometimes he made sense mostly. Often not. He kept removing the mask. I kept putting it back on. He kept trying to sit on the edge of the bed. Tried to walk to the bathroom. I prevented all of this, of course. Madness. A fever-dream. Around 4:30am I joined a 7:30am New York City Alcoholics Anonymous Zoom meeting. It was nice. I listened, watching my dying father, who’d finally passed out. His rail-thin, mostly naked body lay exposed on the bed, the covers pulled off him; he’d become warm. (His feeling cold or hot rises and falls seemingly randomly.) I kept thinking, Remember this time, Michael. Remember this night. Remember this moment right now. It’ll all be over soon and this will all be a memory.

Unable to stay awake any longer, I woke my mom at 6:15am. It was light outside. She came in, after hurriedly getting dressed. The dogs followed in her wake. Dad was asleep.

*

When I awoke again it was 9:36am. I felt better. I got up and walked up the stairs and down the hall and entered Dad’s room. He was back to normal. He and Mom were chatting. I sat down. Turned out Dad didn’t remember a single thing about last night. Total loss. Total blackout. Delirium. We filled him in on some of what he’d missed, describing the reaching out and the shaking and muscles-spasms and the garbled speech and removing the mask, etc. Dad apologized and thanked us for being “strong as the rock of Gibraltar.” That felt good. All these years later, even now I still crave my father’s approbation. Sons are always sons and fathers always fathers. Strange how that works.

Today was nothing special. Took care of some financial stuff related to Dad’s investments. Made a few calls. Got a new oxygen concentrator provided by Hospice because the older oxygen is no longer covered. (Pain in the ass.) Most everything has been covered by Medicare but not all things. I can only imagine what this journey would be like for working-class people or lower-income families, especially those with bad or no insurance. What a wild, disorganized, often dysfunctional medical system.

The new oxygen concentrator and tanks came today. The guy helped us set it up. Dad’s going again on the new one. He’s back to normal. No more Ativan. We got a new drug with little to no side effects as a replacement for anxiety. And there’s the Morphine still, of course, for the breathing. Dad said he’s at about a 6/10 as far as discomfort and harder breathing. Not terrible…but not great either. I asked him if he had the Death Med now would he take it and he said not now but soon. (Two days ago he said a couple weeks, which admittedly was unrealistically long but it shows his mental shift in just 48 hours.)

Getting the Death Med has been slow. Our oncologist—who I have complicated mixed feelings about—has not responded to our urgent message yet, about doing the five-minute Zoom chat and prescribing the med for Dad so we’re moving forward with the Hospice doctor instead. We need this med. Dad wants the option, and things seem to be somewhat dodgy and on and off. Mom and I want him to have the ability to take his life in his own hands and make the best choice for him. The ball is rolling on that: Hopefully it happens soon. Perhaps he’ll take the med later this week, or early next week. Perhaps not that soon. We’ll see.

Writing out here at the glass-topped table I feel tired and ready for this all to be over. I’m not in any rush for Dad to go, but at the same time I know my life can’t move forward until he does. Mom’s can’t either. And Dad is just buying time now. He’s ready. It’s just a matter of opportunity. We’re getting there. It’s still, of course, going to be grievously hard, painful and sad when he dies, and most likely we’ll have final words and tears and we’ll be right there with him holding his hands, which I both want and yearn to avoid. But ultimately it’s a burden of privilege and an honor. I love this man. He is my father. I’ve been with him since the start of this thing. I’ll be there, with my mother, until the very end. First two punks, last two punks, as Matthew Lillard says in 1999’s classic SLC Punk.

My sister and brother-in-law and my niece came this morning again. It was actually nice. They were less smiley. I felt in either better or more sleep-deprived loopy spirits. We all hugged and talked for an hour. The usual superficial bullshit but it didn’t bother me as much. Dad talked. We told them about the Ativan Nightmare. I gave dad an injection of something—the new drug—and my sister said, Look at you. Yeah, I thought, I’ve been doing this for two years, Mrs. Johnny  Come Lately. That’s the thing about the siblings who defer all effort to The Other Sibling; they don’t have to do shit; they come late into the game; they act like they’re something special.

But eh; too much work to give a shit about my sister and that bullshit right now. The important thing is this. Here. Now. My father. Me and my Mom.