Home Is Burning (29 page)

“What'd you think? Wasn't she great?” she asked as though Greg, my dad, and I hadn't just taken an epic near-death space voyage.

“We're never coming to another one of these,” Greg said.

“It's just too dangerous with Dad. He almost died,” I added.

“Where the fuck is Chelsea? We need to get this dying man on wheels back to his home hospital bed,” Greg said.

Just then, Chelsea arrived—all made up, still in her dance tights. Her toothy smile beamed back at us without showing an ounce of disappointment. My dad's cuff was inflated, so he couldn't talk. Instead, he clicked his mouth twice to grab Chelsea's attention. She ran to him and grabbed his right hand. He clicked twice again and gestured with his eyes down to the flowers sitting on his lap. She picked them up and smelled them. He smiled at her, forgetting about how he had almost just died, forgetting that he was about to die, forgetting that everything had been taken from him but his family and his little Dance Princess.

He mouthed, “Good job,” to Chelsea.

She smiled and mustered a quiet “Thanks.”

Seeing how proud my dad was, and how happy Chelsea was, I knew we had to keep her dance dream alive. My mom was right. She couldn't lose dance and her dad in the same year. Life was hard enough for our Baby Moe Ham. She needed all the encouragement she could get.

“You're going to be in the New York City Ballet one day,” I said, flashing a supportive smile.

“You were by far the best one up there,” Greg added, playing along.

“Yeah, I know,” said Chelsea, smiling, her dream living on.

We stood there for a minute and soaked in the moment. I finally interrupted. “Okay, great. We did it. Now let's get the fuck out of here.”

 

HIDDEN BROWNIES

Abby finally visited. She hadn't seen my dad since summer—before he had gone on the respirator—so she was absolutely shocked to see how bad he had gotten.

“Oh my God,” she said. “He looks like a different person.”

“Yeah, well, he has fucking Lou Gehrig's disease. What did you fucking expect, moron?” I wanted to say.

“I know. It's crazy. I love you, babe,” I really said.

I wanted to get the fuck out of the house, so we spent a couple of nights up at my family's condo in Park City: we watched movies, lounged around in robes drinking wine, sat in the hot tub, and fucked. It felt like old times again. It was like we were back in Palm Desert, back when everything was perfect—just a couple of young in-love assholes feeling like we were going to live forever.

“Your condo is so nice,” Abby said while finishing off her glass of wine in the hot tub, our robes hanging off to the side for when we wanted to go back inside to drink wine by the fire.

“I know. I wish I could live here instead of at my house. Maybe I'll run away from my family and move here,” I said.

“You totally should.”

“Unfortunately, they'd find me,” I said.

And they did find me. Without me at the house, there weren't many capable hands to watch my dad. My mom couldn't be trusted around the respirator. She had replaced her chemo brain with pain pills, and occasionally seemed even more out of it than she had when she was being treated for terminal cancer. Greg was so burned out he couldn't handle it anymore. He had to get on with his life. He had gone out and gotten a full-time reporter job working the entertainment beat at the
Park Record
, Park City's local newspaper. He could pitch in at night but was no longer around during the day. My mom was leaning on me extra hard. She called.

“Dan, we need you back down here. I don't know how to work this fucking respirator and I have an appointment with Dr. Buys up at Huntsman,” my mom said. I could hear the respirator going apeshit in the background.

“BEEP. BEEP. BEEP. Your dad's going to die because your pill-popping cancer mom doesn't know what she's doing,” screamed the respirator.

“But I'm with Abby. We just opened a fresh bottle of wine,” I said.

“Get your ass down here. Your dad is dying. You and Abby can get drunk and fuck each other some other time.” She hung up.

So Abby and I put the robes away and drove back down Parley's Canyon to go watch my dad. Abby was quiet. I could tell she missed how things used to be, that she wanted to keep hanging out in the robes and drinking our brains away. She wanted me to get out of this situation. I did, too. But I couldn't. I had to be here. This was my life.

We got back to the house. I ran upstairs and began attending to my dad. I got his respirator under control. Abby sat in a bedside chair watching me care for him. I suctioned my dad, rotated him in bed, and changed his sweaty sheets. When I grabbed his dick and placed it in the urinal so he could take a pee, I almost felt like I was showing off to Abby how good I had gotten at taking care of my dad. She had to be impressed, right? I felt that if she saw everything I had to do, maybe she'd have more sympathy for me and think I was a hero (of sorts). Or maybe she'd see how good I was at taking care of someone else, and view me as a long-term-provider type whom she wanted to spend the rest of her life with.

She didn't.

Instead, she was horrified and incredibly uncomfortable. She wasn't used to seeing my dad like this. She was used to drinking eggnog with him at Christmas, or running with him across the Golden Gate Bridge. She wasn't accustomed to seeing him fill a plastic container full of piss while a machine breathed for him. I was so desensitized to the whole thing that I had forgotten how uncomfortable it made other people.

My dad needed to take a shit, so I had Abby help me transfer him onto the commode. The transfers were getting harder and harder because my dad's legs were getting weaker and weaker—it was always easier with two people. My dad was wearing only his diaper, which started to slip off his bony bottom as we lifted him.

After the experience, I found Abby in the basement crying.

“I can't do this, Dan. I have school and my life. I just can't,” she said.

“I know,” I said.

“You need some help. You can't do all this alone,” she said.

“I know,” I said.

“I hate seeing you like this. You're depressed, and you're not taking care of yourself.” I'm pretty sure she was referring to the weight I'd gained.

“I know,” I said. “But what the fuck am I supposed to do? Just let my fucking dad die? I can't do that, Abby. I can't. He's my dad.”

“I know, but … this is so hard.” She hugged me and cried.

I drove her to the airport the next day. We agreed that if I wanted to see her, I would come out to Berkeley. I was fine with that. It was best if she wasn't here, I suppose. She had a life, a career to worry about. Lou Gehrig's disease shouldn't fuck up everyone's world completely. I gave her a curbside kiss.

“I love you, Dan. You need help at home. Go find help,” she said.

“I will,” I said. I gave her one more kiss. She went back to Berkeley and I went back to my dad.

*   *   *

I took Abby's words to heart. We really did need some help around the house. My mom had refused to hire an aide initially because she thought we could do it all. As this situation pushed on, it was becoming more and more apparent that we couldn't. We were all tired and on edge, and it was starting to affect the care my dad was receiving. He was unshaved; he looked glossy and unwashed—like a homeless person. He wasn't getting outside enough. He was trapped up in Tiffany's old room, a prisoner to his body and to this house. I was pissed at Tiffany and Greg for having lives of their own. I was sick of Chelsea and Jessica's shit, too. They were young, but they still should've been doing something instead of nothing. Fuck that and fuck them.

“Chelsea, you need to help out more, you little asshole,” I told her one night.

“I can't. I have school and dance,” she giggled while doing a ballerina spin.

“I'm going to take a dirty shit in your pillow,” I warned her.

“I'm going to take a dirty shit in your pillow,” she repeated. We laughed.

“How about you, Jessica? Can't you do a fucking thing around here? I mean, you're hardly going to school,” I said. She just walked by me and slammed the door to her room.

I was physically breaking down. I just couldn't give any more. I felt like an athlete who runs out of gas at the end of the game. I needed to rest, and I wanted my life back. Depression was taking hold of me. I was forgetting that there was a world outside of my dad's home hospital room. Sure, I'd go out drinking with some pals, but I'd have all my problems waiting for me when I got back home. Lou Gehrig's disease wasn't going to go away. We were stuck with it. I was also starting to resent my dad for the first time in my life. I was all about trying to keep him alive for as long as possible, but this was getting ridiculous. Why did he have to get this stupid disease? Why did he have to go on the fucking respirator? Just so he could torture us?

I finally, finally convinced my mom that I was experiencing “caregiver fatigue,” that I was too burned out to be the primary caregiver anymore, that I needed more breaks and more help.

“We need to hire someone to help. I need my life back,” I yelled.

“Okay, fine. But I really think we can just do it,” she said, half falling asleep as the respirator started its beeping.

“We're hiring help, Mom. That's the end of it.”

One of the social workers at the University of Utah had given us the number for a home nursing service. I called them up to see if they could send someone over for Tuesdays and Thursdays, allowing me to escape the house and try to have a little bit of a life. They said they'd send someone over right away. Oh, fuck, yeah!

I called Abby. “We're getting some help, finally,” I said.

“Oh, that's so great. Yay!” she said.

“I love you.”

“I love you, too.” Maybe it was all going to work out and we'd be able to be together, drinking wine and sitting in hot tubs forever.

*   *   *

The first person they sent over was this big, strong Tongan woman named Meredith. The Mormons do a lot of missionary work over in third-world countries like Tonga. They then bring a bunch of people back to Utah to start Tongan-specific wards. Consequently, there's an abnormally large Tongan population in Utah. Meredith had come over to the States recently to be with the rest of her family. She needed a job, but she didn't speak much English, so she started working with the handicapped.

Meredith wasn't actually a nurse, just an aide. Aides differ from nurses in that they can't provide any medical assistance. They help with basic things like sitting with the patient, feeding and showering them, helping the patient go to the bathroom, or going for walks with them. We still had to manage the respirator and suctioning stuff. I was equally concerned about finding someone who got our family's sick sense of humor as I was about finding someone who could provide the best care for my dad.

Meredith's main asset was her size. She could pick up my dad as if he were a rag doll and get him into a wheelchair or back into his bed. With Meredith, we didn't need two people to transfer my dad. She could do it herself.

“Wow, you're gigantic,” I said when I first met Meredith, just as she was transferring my dad from his bed to his wheelchair.

“So are you,” she said back with a smile, while looking at my growing potbelly. I guess her English wasn't that bad, and she could crack a joke. Off to a good start.

I tested her sense of humor a little more. Since my dad's name was Bob, some random friend had sent over a bunch of Bob-themed T-shirts. One said,
BOB'S SON
; another said,
BOB'S BABE;
another said,
I'M WITH BOB
, with a picture of a finger pointing to the left; another said,
BOB ALMIGHTY
. The one for my dad said,
DON'T WANNA. DON'T HAVTA. I'M BOB
. I wore the
SON
one, my mom wore the
BABE
one, my dad wore the
I'M BOB
one, Jessica wore the
BOB ALMIGHTY
one, and we made Meredith wear the
I'M WITH BOB
one.

“You have to wear this every single time you're over here, okay, Meredith? This is your uniform,” I jokingly told her. But she didn't get that joke and thought she actually did have to wear it. So every Tuesday and Thursday, she'd show up in the shirt. I didn't have the heart to tell her she didn't actually have to wear it all the time, so she just did.

She was very helpful, and even offered up a few solutions to ongoing problems. For example, we were always having trouble getting my dad's shirts on and off. We'd have to sit him on the edge of the bed, unhook his tubing for a brief second, and try to carefully slide a T-shirt on over his bloody trach hole. It wasn't efficient, and the lack of oxygen would leave my dad about dead by the time we got the shirt on his skinny back.

Meredith came up with the solution to cut the backs of the shirts open, so we could easily slide them on and off. She knew how to sew, so she even sewed these little string ties on the back to hold the shirt up. It worked like magic. We didn't even have to sit my dad up, and didn't have to remove his tubing.

“Meredith, you're a fucking genius,” I told her.

“What is a genius?” she asked in heavily accented English.

Everything was going along swimmingly with Meredith when we got a call from the home nursing service. They informed us that Meredith had quit, that she thought the situation was too hard and sad. She wanted to find something that wasn't as physically and mentally exhausting. We didn't see her again. She left us. And, to add insult to injury, she took the
I'M WITH BOB
shirt.

The next nurse to arrive was a young, vibrant girl named Marianella. She was from Argentina, but had lived in Miami for several years. She was a Miami Heat fan, which, being a giant Utah Jazz fan, instantly pissed me off. She had much more training than that big, quitting sack of shit Meredith, so she was quite a bit more professional. She didn't like to joke around, and the chances of us getting her into a goofy T-shirt were very small. She was all business, and even called my dad “Mr. Bob” and my mom “Ms. Debi.”