Home Is Burning (24 page)

*   *   *

An ambulance picked my dad up at the hospital to bring him home. I went along for the ride. I looked for the “bro” dude, but he wasn't there. I imagined him railing lines of coke and hitting on chicks at the mall, it being Christmastime and all.

The ambulance arrived at our house. I told them all about the elevator. “Those fuckers at the Elevator Company—stupid name, by the way—didn't do their stupid job, so we'll have to go in through the front door. What dicks, right?”

“Not a problem,” one of the paramedics said, brushing it off. “We've got a transfer board anyway. Plus, we wouldn't all fit in the elevator.”

Fuck. I wish I hadn't made that piece of shit at the Elevator Company feel bad for not getting the job done if we weren't going to even use the elevator. Poor guy was just trying to get through life like the rest of us.

The paramedics got my dad onto the transfer board and started carrying him in. There were a million things that could have gone wrong. I pictured one of the medics tripping over a cat and flinging my dad's limp body onto the Christmas tree. A branch would yank the trach out of his throat, sending blood and spit all over the family portraits in the living room. The respirator would fly through the air and nail my mom on the top of her bald head. She'd fall to the floor like a sack of cancerous potatoes. Something at some point would spark a fire—maybe the Christmas lights. Everything would go up in flames. We'd try to get my limp dad and unconscious mom out of there, but it would be too late. We'd get out and save ourselves, but everything would be lost. All our pictures. All our memories. All our Christmas presents. All our parents. We'd look at the smoking house from the outside and say something like, “Looks like this won't be a very merry Christmas for us.” Ralph would pop over and watch the house burn with us. “I told you idiots so,” he'd say. Then we'd do something depressing, like eat Christmas dinner at Denny's and talk about how our parents were dead now.

However, nobody tripped on anything. I watched my dad's face as he was carried in. He looked around at the tree and all the decorations in awe—like a little boy experiencing Christmas for the first time. It was crazy to me that only a year ago we were all circled around the tree in our silly pajamas planning for the Lou Gehrig's disease. And now my crippled dad was being carried past it, hooked to a fucking breathing machine. The paramedics continued hauling my dad through our house and up to his new room. They carried him past his favorite spot at the kitchen table, where he would always read the paper and drink his coffee. Past a wall of photos of him and his loving family during happier times: on vacation in Hawaii, skiing at Deer Valley, sitting poolside in Palm Desert. Past the master bedroom, where he and his wife had slept side by side over the years. He smiled. He was glad to be home, glad to be anywhere besides that hospital.

We got him settled into his new room. He looked around.

“Let's hope the cats don't start pissing all over this room, too,” I said as I put a pillow beneath his head, already getting to work as his new home health nurse.

His cuff was deflated so he could speak. “I like the TV,” he said.

“Yeah, I bought that. Well, you bought it. I stole your credit card,” I said.

I noticed he was checking out all the medical supplies and gear that made it look like he was still in the hospital room.

“Sorry it looks like a hospital room. I know you just came from one,” I said.

“No. It's fine. It's good to be back home,” he said and smiled.

“It's good to have you back. Place wasn't the same without you.”

And it was nice having him back home. He was the glue that kept this family together, the pulse that kept our collective hearts beating. No matter what differences the rest of us had, we were bonded by our unconditional love for our dad. His room instantly became the hub of all social activity in the house, the new hangout spot. Friends and neighbors stopped by all the time to visit again. His closest pals came over with some beers and drank with him, though my dad, of course, had to stick to the Promote. The dogs ran in and out of the room, wagging their tails so hard that it looked like they were going to fly off, happy that the house was full of life again. Fuck, even the cats would come and nap in his hospital bed with him, syncing their purrs with the respirator.

Stana said it best: “Daddy is now makin' home happy again.”

Jessica and Chelsea hadn't spent much time up at the hospital because they had school, but once my dad was home, they finally got to hang with him. Chelsea would bring her homework up to the room and do her math at the base of his bed. She'd even ask my dad the occasional question by holding the book up to his face. He'd try to answer, but she couldn't understand him very well with his new trach voice. Jessica didn't do homework. She was barely hanging on at school. Instead, she would plop down on the bed next to my dad's and watch HDTV with him.

But having him back wasn't all fun and games. Caring for him was a real drag. A respiratory nurse, a physical therapist, and a speech therapist would stop by once a month, but other than that, everything was our responsibility. He constantly had to be rotated in bed. He needed to be fed three times a day and suctioned about twenty. He was always pissing. And he shit twice a day—once in the morning and once just before bed. The worst part was that one of us had to sleep next to him every night in case something went wrong with the respirator. My mom was still recovering, so it was on Greg and me. No more sitting in the hot tub and sleeping in until noon. No more chatting about fucking Daniel Day-Lewis. Daddy Duty was very much back on.

We duct-taped his doorbell to the base of his bed so his strongest foot could ring it. We'd usually get him to sleep around eleven and doze off ourselves around midnight. It was pretty surreal to me that I was sleeping next to my dying father instead of Abby. He would wake an average of five times a night and ring his bell. When he'd ring it, it was usually for a pee or to be rotated in bed. But sometimes the respirator would go off.

“BEEP. BEEP. BEEP. Wake the fuck up so your dad doesn't die,” it would say.

“Fuck you, respirator,” we'd say back. I instantly hated the respirator, even though it was keeping Dad alive and giving us more time with our pal. It was always going off. It was like that annoying friend who never knows when to shut their fucking mouth. The beeping usually meant that my dad needed to be suctioned. We'd fire up the suction machine and plunge the little plastic tube into his throat to suck up all the mucus. It was a horrible way to wake up. I've never had to care for a crying baby, but I'm sure this experience wasn't much different.

Regardless, it was still nice to have our dad back home.

*   *   *

During the first week, I was feeling pretty great about the job we were doing: My respirator skills were improving, minimizing the number of times it would beep uncontrollably. We were rotating my dad in bed so he didn't get bedsores and die. We were doing all of his physical therapy exercises. To top it off, we even placed the commode next to his bed and learned how to transfer him onto it so he didn't have to shit his diaper. My dad seemed comfortable and happy.

But then we had a massive snowstorm, and, of course, the power went out. It was pitch black in the house.

“BEEP. BEEP. BEEP. Fucking do something or your dad will die,” the respirator shouted. It was freaking out because it needed to be connected to a power source.

“Please, just relax, respirator. We're doing our best. We care so much about our dad and don't want him to die either,” we said.

“Sometimes I'm not so sure about that. You seem to be fucking up constantly. BEEP. BEEP. BEEP,” it said back.

Using the light from my cell phone, I was able to connect a backup battery to the respirator. The respirator relaxed.

“I'm cool for the time being, but don't keep fucking up,” it said.

I called the power company, and they said it could be up to eight hours before the power would come back on. Shit! The backup battery only lasted four. We'd be fucked in four hours. Completely fucked. We'd either have to use a manual Ambu breathing bag to pump breaths of air into him until the power came back on, or he'd die. I searched the house for a flashlight, but all I found was Ralph's list of things I should've already picked up at Home Depot, which included a flashlight. I was about to call the fire department to send over some paramedics. My dad would probably be taken back into the hospital. He'd be removed from his home once again. But, just then, there was a firm knock on the door. I answered it. It was Ralph.

“Didn't I tell you to get a generator?” he said as we walked up to my dad's room.

“I know, I know, I know. We fucked up,” I said back. “We all suck at this.”

Ralph shook his head at me, then at my dad. “Your kids are idiots, Bob,” Ralph said. My dad smiled and nodded in agreement.

Ralph was able to round up a neighbor's gas-powered generator. We set it in the front of our house, and Ralph fired it up. He brought over one of his long extension cords, because we didn't have any, and ran it up through our house and into my dad's hospital room on the top level.

“We could have used a shorter cord if you had made the dining room his room,” Ralph reminded me.

“I know. We're fuck-ups,” I admitted again.

The power company finally got the power back on. We unhooked the generator and plugged his respirator back into the wall. My dad looked relieved.

“I'm sorry, Dad. We'll do better. That was just a little initial slip-up. You're going to live forever, don't worry,” I said. He didn't seem too sure about that.

The next day, my dad got Ralph to drive me to Home Depot to grab a generator and all the other items on the list. As we drove there, I promised myself that I would do better. I would stop being such a child and try to become the man of the house. I would listen to Ralph. It was time to stop fucking around. It was time to grow up and take life more seriously. No more watching
Elf
and drinking eggnog. My dad's life was in my soft, underworked hands. I had to add some calluses to them, toughen them up.

I bought the best generator money could buy … with daddy's credit card.

 

BOB'S MONSTER BUS OF EXCITING MAGIC

My dad's quality of life would never be what it was. But we all pledged to try to make the time he had left as fulfilling and comfortable as we could. We promised him that, though he was now attached to a respirator, we'd still get him out of the house and take him places. It'd be fun. We'd do a field trip every day. Maybe we'd go to the zoo. Maybe we'd go to a Utah Jazz game. Maybe I'd take him down to a strip club so he could get some tits rubbed in his face. The world was ours!

To keep this promise, we realized that our incredibly expensive luxury vehicles were no longer going to cut it. Lexuses might have heated seats and DVD players and handy compartments and lots of leg room, but they don't have convenient places to host a 450-pound wheelchair with a respirator clinging to the back of it and a near-dead man sitting uncomfortably in it, wishing his life hadn't taken this wicked turn down Fucked-Up Lane. So, we started looking for a wheelchair-accessible van.

My mom and I undertook this project. We didn't know the first thing about buying a wheelchair-accessible van.

“How do we get a van for Dad?” she asked.

“I'm not sure. Maybe we should ask someone who would know,” I suggested.

“Who would know?” she said.

“I don't know,” I said.

“I know you don't know, but who would know?” she said.

“I'm not sure,” I said.

“Me neither,” she said.

I started to call around to places with depressing names like Mobility Utah, or Para Quad Mobility, or Freedom Motors, or Freewheel Mobility. I hate when they try to put a happy spin on something that sucks. It only amplifies the shittiness. It's like a doctor who dons a clown nose to tell you that you lost both of your arms in the car crash. That's right, fuck you, Patch Adams.

All vans—new and used—appeared to cost around thirty-five thousand dollars, but I couldn't find any that had heated seats and DVD players. Plus, my dad sat at about fifty-five inches tall in his chair, making it difficult to find one with a large enough opening for him to be wheeled through; we didn't want him to have to endure both Lou Gehrig's disease and a bonk to the noggin at the same time.

I decided to call Dave Ricketts of the Muscular Dystrophy Association (MDA) of Utah. Dave was a great resource, and knew everyone who had had or currently had ALS in the entire state. He's a prize of a human being. I always wanted to tell him that he put the
trophy
in
dystrophy
, but didn't think he'd appreciate that dark joke. He was the one who had found the temporary wheelchair for my dad.

I had contacted Dave when my dad went in for his tracheotomy operation, knowing it would take some time for a van to be tracked down, even by the master, Dave. He said he would make some calls.

We waited for several weeks without word. I eventually received a phone call from a woman named Michelle who had lost her husband to ALS two years earlier. She was in her late twenties. Her husband had gotten ALS when he was twenty-eight years old—an exceptionally young age for a disease that usually targets men in their forties or fifties. He only lasted about a year. She had been pregnant with their second child at the time. He elected to not go on a respirator, unlike my dad, but they did do the whole wheelchair thing, so they had gotten a van. The van sat in front of her house, a constant reminder of what had happened to her husband—her first love and the father of her children. Now, she was about to get remarried, move on with her life, and forget about all that ALS had destroyed, so she was looking to donate the van.