Home Is Burning (22 page)

He would also no longer be as mobile as he once was. He would be hooked to a machine via two external respirator tubes: a blue inhalation tube and a white exhalation tube. So we needed to learn how to move him around without messing up the tubes. This proved to be harder than it sounds, because one wrong tug on one of the tubes and it would pull on his trach tube, possibly ripping it out of his throat. “That would be pretty painful,” explained the doctor. “No shit,” I wanted to say.

Since my dad was mainly restricted to a bed, we'd also have to learn some physical therapy exercises and how to rotate him so he didn't get bedsores. When he wasn't in bed, he'd be in a power wheelchair. He had been fitted for a chair before the respirator, but it was still being built at the magical wheelchair factory. Some generous guy from the Muscular Dystrophy Association (MDA) found us one we could use temporarily. We'd need to know what all the controls and buttons on it did. Additionally, we'd have to learn how to transfer my dad from his bed to the wheelchair, and vice versa, without killing him.

He'd now be in diapers. He wasn't happy about that. They made him feel too helpless and too much like a baby. I guess lying around shitting yourself is sort of the definition of helplessness. So, though he had to wear the diapers (which one nurse made us call “briefs” to try to protect some of his dignity), my dad insisted that we learn how to transfer him from the bed to a bedside commode, so he could take a shit there instead.

Our hope was that we could figure this whole thing out, adjust to my dad's decline, and get him into a Stephen Hawking situation where he lived a long, long time. We figured that having our dad in this state was better than not having him at all.

The good news was that he could talk. We were worried that the surgery would destroy his vocal cords, but it didn't. He had a small balloon in his throat called a cuff, which blocked the respirator air from leaking out of his mouth. It was used to assure that my dad got as much oxygen as possible. To talk, he had to have his cuff deflated so air could pass over his vocal cords. His voice was raspy and had a constant hum, but we learned how to understand him. Small victories.

Our mom was still getting pounded with chemo three times a week. But that just didn't seem like a big deal anymore. Had she not been bald, we probably wouldn't have even noticed her cancer. Dad was the star of the show. He was the closest to death. He got all the attention. This continued to upset our mom, because she was used to playing the lead in
The Marshall Family Tragedy
, given that she had been battling cancer for fifteen years. She started to get a little jealous of all the attention my dad was getting, especially now that he was in the hospital. I knew it pissed her off, so I really played up the attention I gave my dad.

“How are you doing today, Dad?” I asked as I walked into the hospital room, completely ignoring my mom, who was eating yogurt next to the hospital bed.

“You know, I'm sick, too,” my mom said.

“Yeah, but you can move your arms, scratch your own nose, wipe your own ass, walk, breathe, talk. You're practically the healthiest person on earth by comparison,” I said.

“Yeah, but I have cancer, and my bones hurt, and I'm tired, and I wouldn't mind having someone else wipe my ass,” she said.

“Yeah, yeah, yeah. So anyway, how's Dad?” I asked again.

*   *   *

We were all pretty nervous about this next stage of the Lou Gehrig's battle. With the caregiving pressure increasing, we needed to step up to the plate with the game tied and smack the baseball out of the park. Most of it was still on Greg and me. Tiffany was still wrapped up in school and work, and would visit BCB in Maine about every other weekend, it seemed. She was so stressed and overwhelmed that she looked as though she was going to have a nervous breakdown. My mom was still too out of it to actually do any caregiving. If she were in charge of my dad, he would most certainly die. The hope was that we could get her through the last push of chemotherapy (she was almost done) and healthy enough to help us out a little more. Then, maybe things would get better. We could reclaim some of our personal lives. We could get real jobs. I could actually leave the house. And maybe I could eventually move back to California to be with Abby. I'd be happy again, and on my way toward living forever!

Greg and I both had the free time to be up at the hospital. Greg had taken a job at Franklin Covey selling day planners, but was only working a couple of days a week. He wanted to get a job just to get out of the house. Plus, all his friends from college were working, so he was starting to feel like a loser. Nothing gets you down like not having a job. He had the “our parents are dying” excuse but didn't feel even that was an adequate enough reason for not working.

I was heading in the opposite direction. I had just let my boss in Los Angeles know that things were too hard at home for me to return. It was a difficult conversation to have. I had been really hopeful going into this situation that I could eventually come back. I was coming to see how unrealistic that notion was. I felt that my old life was starting to disappear completely. All that work building a career was just consumed by this disease. I was now living an alternative life I never saw coming. I just hoped that after it was all over, I could get back on track.

Initially, Greg and I took the training seriously. We'd drop my mom off at chemo at Huntsman, then go to the rehab facility. Luckily, the two were adjacent. We learned how to change our dad's diapers. He had changed our diapers back in the day, so I guess what goes around comes around. We learned about his wheelchair. We learned what all the tubes on his respirator meant.

But we slowly started to shift into goof-around mode. We were supposed to drop my mom off at chemo, show up at the rehab facility by 9 a.m., and stay until 4 p.m.—a seven-hour day. Instead we would roll out of bed around ten and question whether we should even go in that day, treating the whole ordeal as a vacation. We had been taking care of our dad intensely over the past couple of months with no assistance. Having him at the rehab facility was a nice break. He was hooked to machines with a nursing staff at his beck and call. He wasn't going to die. He was fine. He practically didn't even have Lou Gehrig's disease anymore.

Home without my dad there was much more relaxing. There was no Daddy Duty. There were no doorbells. There was no waking up in the middle of the night to help my dad shit. We could just hang out and be degenerates in our awesome house. “I might just sit in the hot tub and watch
Curb Your Enthusiasm
,” I said upon waking up from a twelve-hour sleep one morning, still in my robe, munching on a plate of lasagna for breakfast, because why the fuck not?

“Yeah, I'm probably going to play tennis and look for vests at Thrift Town,” Greg said.

“Where's Mom?” I asked.

“She's at chemo.”

“Who drove her?” I asked.

“I was supposed to, but I was reading about
There Will Be Blood
online, so she drove herself. I'm so excited for that movie. Daniel Day-Lewis is so hot. I would definitely fuck him,” he said.

“Shit, I might even fuck him,” I joked.

“He'd be a big upgrade from Abby,” Greg replied with a smile.

“Man, we should've probably driven Mom to chemo,” I said. “Ah, fuck it. You want to grab a burrito?”

The rehab facility was a sad place full of patients trying to adjust to their new, horrible lives. Most had been in car accidents. Some had had strokes. My dad was the only person up there with Lou Gehrig's disease. The hallways were full of wheelchairs and there were constant beeps from all the medical devices making sure all the patients stayed alive. It was a place where you tried to feel optimistic and have a positive outlook, but it was hard to not feel sorry for everyone there.

I also felt guilty. Why was I able to walk around, eat, fuck, live, while all these poor souls were imprisoned in their own bodies? It just didn't seem fair. I felt the weight of a great imbalance in the universe. Why couldn't we all just be okay? My dad's roommate had it the worst. He was a kid from Elko, Nevada, probably nineteen years old. He had been in a car accident. He had severe brain damage and was paralyzed from the chest down. My dad looked like LeBron James next to him—the model of good health and physical prowess. The only thing he did all day was click the button for more morphine. The nurses had to come tell him to stop pressing the button, that he'd already had his daily allotment of the painkiller. And it was only 11 a.m. Once, his friends drove in from Elko to visit. They brought him a Slurpee. He refused to drink any of it. He was too depressed to even drink a Slurpee. Too depressed for a Slurpee? Now that's depressed.

My dad was under the supervision of Dr. Rosenbluth, who looked a lot like Gene Wilder; a physical therapist, Jenny; an occupational therapist, Catherine; a speech therapist, Kristin; a respiratory therapist—usually a fat guy named Geoff who looked like Philip Seymour Hoffman; and a team of nurses. Dr. Rosenbluth would come in soon after we arrived, speak medical jargon for about ten minutes, then ask if we had any questions. We never did, but I always wanted to ask him if he was Gene Wilder in hiding.

The goal was to get my dad home as soon as possible. He was supposed to be in rehab a week, as that is the amount of time it usually takes caregivers to learn the necessary tasks. However, the relaxed mentality Greg and I had at home started to carry over to the training. We dicked around a lot. I think subconsciously, we didn't necessarily want him to come home. It would mean that the vacation was over and that we'd have to go back to being the exclusive caregivers. We weren't quite ready for that.

The medical staff noticed what idiots we were, so they didn't trust us to care for our dad full-time. They refused to discharge him until we had displayed that he was being released into capable hands. So they kept pushing back the date. We got this comment a lot: “Well,
he's
ready, but we should probably get
you guys
a little more trained.”

We spent most of our time joking around. We'd drive my dad's new power chair up and down the hallway using the head controls. We'd grab my dad's limp hands, roll his fingers into a fist, and pump his wrist above his penis to make it look as though he was jacking off. We'd throw small pieces of paper at our mom as we talked to the nurses about how crazy she was when she had chemo brain. We'd joke about dressing our parents up in skeleton costumes as a sick prank. We'd encourage my dad to stop taking the rehab so seriously and instead catch up on the Bourne trilogy.

My dad even got in on the dicking around. We'd unhook his respirator for a couple of seconds. He would fake die, and then we'd fake save his life. When a nurse would ask him how he was doing, he'd often smile and say, “Good, just got back from a long run.” We'd even race him up and down the hallway in wheelchairs. We'd always win because he'd accidentally slam his into a wall, having not mastered his driving skills yet. In other words, we were in complete fuck-around mode. At this rate, my dad wasn't coming home anytime soon.

There was a Starbucks on-site, so Greg and I took turns fetching each other drinks. It was closing in on Christmastime, so they had eggnog and cinnamon lattes. We were consequently spending more time walking to and from the Starbucks and raving about the drinks than we were learning how to take care of our father.

The staff started to become increasingly frustrated with us, as they were trying really hard to teach us everything. You could tell Jenny the physical therapist was getting sick of our antics. She would say things like “Okay, guys, this is important, so pay attention,” or “Wow, how many eggnog lattes have you had today?” or “Stop throwing things at your mom and listen for a minute.”

One day, she sort of snapped. She was stretching my dad's right leg by flinging it over her right shoulder. “Okay, this stretches his semimembranosus muscles, as well as his gastrocnemius,” she said.

I took the last sip of my nonfat eggnog latte, noticed it was finished, and said, “Shit, Greg. My latte is out. It's your turn to grab.”

“I'll be back in ten. Nonfat eggnog latte, right?”

“You nailed it,” I said.

Jenny shook her head and released my dad's leg. “I'm not doing this anymore until you guys start taking this seriously,” she said.

Greg and I looked at each other. We should have apologized and rededicated ourselves to the rehab, committing to getting my dad out of there as quickly as we could. But instead, I smiled at Greg and said, “Oh, actually, Greg, could you make mine a fat latte? I love fatties.” Jenny stormed out of the room. It wasn't one of my finer moments. Dickhead Dan strikes again. We looked at my dad and just shrugged.

*   *   *

Despite undergoing chemotherapy, my mom still tried to participate in the training sessions, but she looked as though she should be lying in the hospital bed next to my dad instead of learning how to care for him. When she wasn't falling asleep standing up, she was wandering back and forth between my dad's room and the cafeteria. She wasn't part of the Starbucks crew, only because they didn't have strawberry yogurt and the cafeteria did. Plus, she already had the shits from chemo, so the coffee would have given her whatever is the next step past diarrhea. She still had flashes of chemo brain. She was constantly pushing for us to get Cheetos for some reason.

“Do you want any Cheetos?” she asked.

“No, I don't really like Cheetos. They make my fingers orange for the rest of the day. Plus, they don't have them at Starbucks,” I said.

“Yeah, but don't you want something to snack on, like Cheetos, or something?” she asked again, sort of implying that she wanted some Cheetos.

“No. Do
you
want Cheetos?” I asked back, confused as to why she was so hung up on us getting Cheetos.