Home Is Burning (23 page)

“No, I have some yogurt,” she said. “You sure you don't want any Cheetos?”

As our time in rehab progressed, Tiffany started to make more of an effort to be around. She'd come up and try to learn the respirator, or do some of my dad's physical therapy stretches, or just drink some Starbucks with Greg and me. I was trying my best to be nicer to her, figuring that I was part of the reason why she hated being around my dad. We needed her help—we needed everyone's help. But she couldn't make it up as often as she needed to. Between the four of us, there was very little learning happening.

But my dad was making progress. He was actually able to still walk with the assistance of Jenny and Geoff. We just had to wrap a gait belt around him, so we could stabilize him and catch him if he fell. He had hardly been able to breathe before going on the respirator. It sucked energy out of his body and color out of his face. The respirator gave him more life and brought a warm, pink tint to his cheeks. He looked better, and he was happy that things finally seemed to be improving.

He'd excitedly tell us about the strides he was making during the day. “I was able to walk to the end of the hallway and back,” he told me as I sipped on my eggnog latte.

“That's great, Dad. I'm very proud of you, but which Bourne movie are you on? You better at least be through
Supremacy
or I'll be pissed,” I'd joke back.

It got to the point where my dad couldn't stay any longer. Insurance money was running out fast and the staff was tired of Greg and me cruising the hallways in the power chairs, slapping high fives as we passed each other, making sure to not spill our sacred coffee drinks. We had to step it up.

By the middle of December—a month and a week after he had been admitted—the doctors and therapists all hesitantly approved my dad's release, giving us you'll-be-back-because-you're-a-bunch-of-incompetent-shitheads grins. The grins suggested that they didn't trust us, and I don't blame them. I didn't trust us.

In retrospect it seems pretty clear that taking forever to learn how to care for our dad was a defense mechanism. It wasn't that we weren't smart enough to handle it. We were all just scared to take care of Dad on a respirator at home. It's a lot of responsibility to have a fragile life in your hands, especially when you care so much about that life. It was going to consume all of our energy. It was going to take over. It was going to change our changed lives even more.

The rehab center had a practice room that was supposed to simulate what it was like to be at home. No nurses were to care for him unless it was an absolute emergency. Before he could be released, we had to spend the night in this room and show that we were capable of keeping our father alive. This was our last test.

Greg and I arrived around 9 p.m., and the nurses rolled his hospital bed into the practice room. We were slightly nervous about finally taking something seriously. The nurses got my dad situated. Changed his diaper. Suctioned him. Brushed his teeth. Gave him his medication. Put splints on his arms. Placed the emergency button next to his head so he could ring for help. The head nurse looked at us.

“So, you think you can handle this?” she asked.

“Oh, yeah. No problem,” I said. “And if we need help, we'll call you.”

“The whole point of this is that you don't call us and do it all on your own.”

“Right, but if we need you, we'll still call you, because we're not just going to sit there giggling as he dies,” I said.

“With you two, it wouldn't surprise me,” she said.

“Touché,” I said. I got serious for a moment. I didn't think she realized how much we loved our pops. “Listen, I promise we'll take it very seriously. We love our dad very much, and we're smarter than we seem. Greg went to Northwestern. I went to Berkeley. We're not complete idiots.”

“All right, well, we'll see. Any additional questions?” she asked.

“Yeah, is Dr. Rosenbluth actually Gene Wilder in hiding?” I asked. She shook her head and headed off down the hospital hallway.

The medication put my dad right to sleep, and Greg and I were left lying in bed with our eyes wide open, staring at the stained ceiling and listening to the rhythmic respirator pushing air in and out of our dad's body. It was like one of our old sleepovers, except now I was twenty-five. Greg was twenty-three. And we were sleeping with our dying father in a hospital. The weight of the situation started to crush us. Could we actually do all this respirator stuff and not be crippled by depression? Was it all worth it? Maybe we should just unhook my dad from the respirator and shoot my mom with a shotgun? Prison couldn't be much worse than this. We had used humor to get through this so far. Could we continue?

I finally broke the silence, wanting to say something that I thought best summed up the whole situation. “Hey, Greg?” I said.

“Yeah?” he responded.

“I want to tell you something,” I said, taking a deep breath.

“Anything. We're brothers, after all,” he responded.

I lifted up my leg and farted a top-ten-loudest-farts-of-my-life fart.

Ppffumphhhhhhhhh.

We laughed so hard we woke our dad up. We passed the test that night. We were ready to take him back home.

 

WELCOME HOME

After almost forty days, my dad was released from the University of Utah's rehab facility and into our slippery, unprofessional hands.

The house was about ready for him. The construction was finally coming to a close. I was happy to have it done for the obvious reasons, but it would also be nice to no longer have all the construction workers wandering in and out of the house while I tried to relax and watch HBO, like a good little rich kid. Having manly men around has always made me feel like a complete pussy.

The last thing on the contractor's to-do list was the elevator, which was, arguably, the most important, since my dad's room was on the top level of our home. They were meant to finish it the day before my dad got home.

I waited for the technicians and crew to arrive, but they didn't. I called the elevator company, which was cleverly called the Elevator Company. After talking to a few middle-management guys, I finally got our project head on the phone.

“Where are you guys? You were supposed to get this thing up and running today,” I said.

“Yeah, sorry, Mr. Marshall. We had some scheduling issues, so we can't make it out there until January,” the elevator guy said. That meant at least a couple more weeks.

“January?” I screamed back, about ready to toss the phone through a window and cry myself to death.

“Yeah. January. Scheduling issues,” he nonchalantly said back.

“That's not acceptable. My dad's coming home from the hospital tomorrow. He has Lou Gehrig's disease. That's a pretty serious disease. He can't walk long distances. He's on a respirator. He's been in the hospital more than a month. Our bills are piling up. We need this done today. This is an emergency. You're not putting an elevator in some vacation rental. We need this fucking thing in there for medical reasons. Life and death. That sort of shit,” I frantically ranted.

“Yeah. Well, sorry. It's a scheduling issue. And I don't appreciate you swearing at me,” he snapped back.

“Well, I don't fucking appreciate you making our horrible lives even more horrible, and blaming everything on a fucking calendar,” I yelled back, then clicked off the cell phone as emphatically as you can click off a cell phone. Bam. One of the remaining manly construction workers was eavesdropping. He gave me a nod of approval after my little outburst. Maybe I was transforming into a man.

So, we were going to have to do this without the elevator. Oh well. At least it was almost Christmas. Maybe I'd have a chance to watch
Elf
.

*   *   *

We had set Tiffany's old room up as my dad's home hospital room. It was a big bedroom on the top level of our house, right in the center, and one of the few rooms that our piss-easy cats hadn't yet destroyed. The medical supply people had actually done their jobs on time. So my dad's new adjustable/retractable bed was all set up. We even had a little rack where we'd hang his respirator—his new set of lungs. All of the respirator supplies arrived in boxes: lots of tubes, humidifiers, extra trachs, sterilization supplies, gauze, bandages, etc. We organized them on Tiffany's old trophy shelf next to ribbons she had won back when she had been an elite swimmer. Her childhood was now covered with the medical supplies that would keep our dad alive.

With the help of Stana, we got the room looking good. Well, not good. But we got it looking like a home hospital room. We put an additional bed in there so whoever was on Daddy Duty could get some sleep. I stole my dad's credit card out of his wallet—which was pretty easy since he was in the hospital and couldn't move—and bought a flat-screen TV with a built-in DVD player for the room so he could watch movies or sports while he lay there dying. Might as well die in comfort, watching HDTV.

A family friend had drawn a beautiful sketch of my dad running in the St. George Marathon. He had a smile on his face. He was happy. No respirator. No Lou Gehrig's. The old Bob. It always depressed me a little because it reminded me what we had lost, how healthy my dad used to be. But Greg had gotten it framed, and we hung it behind his hospital bed along with all the participant medals he had received from running all his marathons. It was like a tribute to his former life as his new one started.

*   *   *

The house was looking pretty good, and we were feeling ready for him. Or so we thought. Then our neighbor Ralph showed up. He had been increasingly critical of the job we were doing managing my dad and the whole situation.

“I feel like you guys are too stupid to figure out how to take care of your dad, especially now that he's on a respirator,” Ralph said.

“Hah, yeah, probably,” I said, ignoring him. Though he had been a big help with certain things like the doorbell, he was a bully when it came to getting our act together.

“Fine, just ignore me,” Ralph said.

“I know it looks like a mess from across the street, but we've really got it under control, Ralph,” I said.

“Doesn't look that way. You idiots don't know what you're doing,” Ralph said.

Ralph was right. We didn't know what we were doing. He seemed to represent the logical voice of reason from the outside—a voice that we needed but didn't take seriously. We were sure that everything we were doing was right, mainly because we didn't know if it was wrong. We were learning an unlearnable job on the fly.

Right as we got his hospital room all set up, Ralph asked why we hadn't just made our front dining room the hospital room. That way we wouldn't have to get him up and down in the elevator in case it broke or was never installed. It was a great idea. We could just build a ramp up the front steps and that would be that. But we were too stubborn to listen to Ralph. We insisted that Tiffany's room would work just fine.

“Well, what about a generator? Do you idiots have a generator? We're having the most severe winter in over twenty-five years. The power might go out, and since your dad's on a respirator, that would be bad,” he explained to me as if I was a child. Salt Lake's winters are always up and down. Some years, we'll get a light winter in the valley where the snow never really sticks. Other times, it won't stop snowing. So far, as Ralph mentioned, this winter was a severe one. Snow was piled two feet deep around our house. Our driveway was caked in ice. Icicles dangled from the rain gutters like knives about ready to drop through our skulls. This type of winter requires a little extra preparedness.

“Oh, relax. I'm sure we won't need a generator. My dad's portable battery lasts, like, four hours. We're golden.”

Soon, Ralph handed me a list of things he thought we needed to grab at Home Depot: flashlights, lots of batteries, lots of extension cords (long and short), a generator, a surge protector, a couple of fans, a dry erase board, and a new doorbell to put at the end of my dad's bed so he could alert us when he needed something. I set the list aside and said that I would eventually grab all the supplies.

“All right, well, it's your dad. Do what you want. Idiots,” said Ralph.

I didn't go to Home Depot. We had other things to worry about. Like Christmas! I closed the front door on Ralph and headed to my dad's new TV to finally watch
Elf
. I kicked up my feet and sipped on my eggnog with an extra shot of whiskey, because why the fuck not?

*   *   *

We had initially decided that we wouldn't do a big Christmas celebration that year. We wouldn't get a tree or any presents. We'd just be thankful for all the gifts we've been blessed with. “I'm so thankful for Lou Gehrig's disease and cancer, because it's taken my father and mother from me, made me quit my job, and is keeping me away from the girl I love. Cheers,” I imagined saying at Christmas dinner, the fire crackling behind me.

However, my mom eventually decided the whole not-celebrating-Christmas thing was bullshit, and that it was a sign that the Lou Gehrig's disease was winning. She had finally finished her chemo and was feeling better. Now she only had to go to the hospital every three weeks for IVIG blood infusions. The infusions helped her immune system and gave her some more energy so she could do things besides eat yogurt and sleep. The best part was that her chemo brain was starting to fade. She was definitely more with it and active. She started Christmas shopping a ton with Jessica. I think she liked the distraction, and it gave her a reason to get out of the house for a little while.

She also decided to mobilize her friends to help her out. She advertised it to everyone as “Bob's Last Christmas,” and asked if people could find it in their hearts to help make it extra special. Everyone decided they could. A group of friends put up a huge tree and decorated it with colorful lights and sparkling ornaments. Neighbors put up lights on our outside trees and fence, and brought over Christmas cookies and gingerbread houses in addition to the lasagnas. Stana made a special batch of Christmas potato salad with extra potatoes. The house looked good. It was all Christmas-ed out. My dad was ready to come home.