Home Is Burning

by Dan Marshall

“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.”

  She was so professional, in fact, that she called shitting “BMs,” short for bowel movements.

  “Don’t you mean ‘shit’?” I asked upon hearing her say “BM” for the first time.

  “We call it a ‘BM’ in the business,” explained humorless Marianella.

  “Cool, well, in this ‘business’ we call it shitting, okay?” I said back.

  Though she was professional, she wasn’t a great fit for our family. We were too crude and crass for her liking. Lou Gehrig’s disease was a serious disease that required serious attention, and in her eyes we weren’t taking it seriously enough. Plus, Mr. Bob had a massive BM in the shower that she had to clean up. She didn’t like that. She, like Meredith, quit through the agency.

  We cycled through a few more over the next couple of weeks. One was giving my dad a sponge bath in his bed, and my dad got a boner. I didn’t even know people with Lou Gehrig’s disease could get hard. I guess he still had that going for him. I wasn’t there for liftoff, but I found out about the boner when my mom said, “Dad got a boner in front of the aide today.”

  I looked over to my dad and asked, “Did you really?” He confirmed with a nod and a smile, as well as an eyebrow raise; you know, all the things males do to confirm the validity of a boner story.

  “I’m proud of you, Dad. That’s great news,” I said.

  But my mom wasn’t proud of him. She assumed that the boner wasn’t just a strange chance happening, but was rather brought on by the presence of the aide. She got a little jealous, and consequently, this particular aide wasn’t asked back.

  * * *

  Since we couldn’t find a permanent aide match, we continued to do the majority of the caregiving ourselves, which continued to wear us down even more. Someone still had to sleep next to my dad every night. I was finally able to get my mom to focus for long enough to sort of teach her the respirator, so she started spending just about every night with him, sometimes even sleeping in his hospital bed. But the night shifts left her exhausted, meaning I had to watch him most of the day.

  I eventually sat down with my mom to try to convince her that the aides the service kept sending over were never going to work for us, that we needed to hire someone outside of their system. Plus, the aides were only coming twice a week. We needed permanent help, at least five days a week. Between the construction on the house, the medical bills, and the equipment expenses, the Lou Gehrig’s fight was costing us a ton of money, so my mom was being a little more careful than she used to be about spending, but I needed to convince her that the added expense of a full-time aide would be worth it.

  “Mom, I love you and Dad and want to help as much as possible, but we need some permanent help,” I said.

  “But I’m sleeping in there now with him,” she said.

  “I know, and thank you for that. But still, can’t we just hire someone to hang with him during the days? Our lives still suck and we’re exhausted,” I said.

  “I’m not that tired,” she said, just about falling asleep with the yogurt spoon in her hand.

  “You’re just about to fall asleep sitting up, dumb-ass,” I said.

  “It’s too expensive,” she argued.

  “Having our lives back is priceless, and Dad needs better care. Come on, Mom. Please,” I begged her, like a sixteen-year-old kid asking for a new car.

  “Fine, but find one who doesn’t give him boners.” Victory!

  So I started to look for someone who could handle our sense of humor and the intensity of the situation, while also being unattractive enough to not give my dad random boners, someone who could come in at nine and stay until five, Monday through Friday.

  Before long, we found our match. Her name was Regina. Regina was a Brazilian woman in her early thirties who loved popping zits and plucking ingrown hairs. She had followed her husband to Utah after he converted her to Mormonism on his mission in Brazil a few years prior, though they were now divorced. Despite having a broken heart, she laughed more than Ricky Gervais at a tickle party, mainly about popping zits and plucking hairs. She was exactly what we needed.

  I was so excited to get some help. I remember singing in the shower, “I’m getting my life back, and it’s all going to be okay, and I’m going to be normal again.”

  Things were looking up with Regina around. My dad was clean-shaven, his hair combed to the side. His clothes and sheets were washed. He no longer looked like a homeless person. He looked healthier and happier—like he might actually have a nice life in his hospital bed. We were all more rested. I felt healthier and happier. My fat ass even went for a couple of jogs. I was so out of shape that I’d almost vomit.

  However, after Regina had been on the job for a couple of weeks, my mom revealed that she hated the new aide. One morning when I asked my mom how she was doing, she replied, “I’m so sick of that fat Brazilian woman sitting around, eating my food and bossing me around.”

  “Isn’t she helping you out, giving you more free time and whatnot?” I asked.

  “No, Regina’s a fucking bitch and she eats all day long,” she replied, like a mean popular girl in high school trying to spread rumors about the new girl.

  Wow. Cards were on the table.

  My siblings and I were at the age where we’d finally built up the balls to reject our mom’s opinions, so we
rejected this one. We thought Regina was great. She was very loving, had a giant heart, was fun to talk to, laughed at all my fart jokes, and, most important, had taken over most of the toilet responsibilities. For us, it really helped restructure our relationship with our dad. Instead of wiping his ass and placing his cock in urinals, we could actually sit down and have a conversation with him. Thanks to Regina, he was back to being our dad instead of being our patient in some sick underground hospital we were running. I no longer resented him.

  Sure, Regina ate some of our food and often asked, “Where did you get that?” and “Why didn’t you get me one?” when I’d bring home a hamburger from a fast-food joint to reward myself after a jog, but who fucking cares. She was great.

  Well, apparently my mom did care. She was jealous of Regina. She didn’t like another woman showing up on the scene and spending more time with my dad than she was. She wanted to be the one taking care of him. Greg, Tiff, and I just marked all this up to our mom being crazy. Though she had improved her respirator-maintenance and caregiving skills, she had recently been prescribed Fentanyl patches for her cancer pain. We weren’t sure who had prescribed them, since Dr. Buys was always really careful about not overmedicating our mom. It must have been some other doctor who felt sorry for her or something. Fentanyl is said to be stronger than morphine, comparable to heroin. So it’s some strong shit. Though we found it easier to get along with her when she had a patch glued to her biceps or shoulder blade because she was so zoned out, the patches started to make her a useless caregiver again. She was left able only to eat yogurt and ask us inappropriate questions about our personal relationships.

  “Are you ever going to get Abby pregnant? I want a grandchild,” she asked. She had given up on the Pez dispenser proposal and was jumping straight to children.

  “Bringing a kid into this world seems cruel, especially now,” I said.

  “I’m gonna start poking holes in your condoms,” she said.

  “Shut up, Mom. You’re nuts,” I said.

  My mom showed her hatred for Regina in subtle ways. She didn’t run into my dad’s room with a knife and yell, “Die, you Brazilian slut!” or anything. But she did these little, bitchy things. For example, when guests visited my dad and asked how it was working out with Regina, my mom usually went into passive-aggressive mode, saying things like “Oh, she’s a big help … when she’s not eating,” or “She’s so fat it’s hard for her to do everything the job requires, like I can,” or “She’s not bad, but she’s getting paid a lot and she doesn’t have any college degrees. I got my master’s from Northwestern and she’s telling me what to do?” or, “Well, she just got a divorce, so…”

  My mom went as far as getting Stana involved in the shit-talking. Stana and my mom were like a couple of cats ganging up on poor Regina. Stana pulled me aside.

  “Danny, I is no likin’ this big one. All day, she is eatin’ and eatin’ and no stoppin’. She is, how called, pig.” Stana pressed her finger to her nose, making it into a pig snout to emphasize her point.

  “Come on, Stana. Regina’s pretty great. We love her. Well, not my mom, but the rest of us do,” I retorted.

  Stana had also picked up on the fact that Regina was Mormon. Though she couldn’t read, Stana liked to dabble into the occasional political or religious conversation. She was talking to me about gay rights or something—using “stupid Mormons” as her main argument—when Regina walked by.

  “Mormon is so stupid. They be, how called, brainwash,” Stana said loud enough for Regina to hear.

  “Excuse me, but I am Mormon. And I don’t appreciate when you call us stupid,” Regina said in her Brazilian accent. She was weirdly proud of being Mormon, even though she was a convert whose Mormon husband had abandoned her.

  “Every Mormon is stupid,” Stana said, pointing to Regina with a dirty rag in her hand. “You is Mormon. You is stupid.”

  “I’m really offended. Please don’t talk to me again. You’re mean to me,” said an innocent Regina.

  “You is son of a bitch,” said Stana as she stormed off.

  Regina would try to ignore Stana and my mom, but at times it would catch up to her and I would have to console her while she popped zits on my dad’s shoulder as he sat on the commode working out a big shit.

  “Listen, Regina, Stana is jealous of you because you are doing more for this family than she is. Don’t listen to her. We love you.”

  On one occasion, I had my dad loaded into the van. We had gotten a new van, finally replacing the Monster. Ralph helped me pick it out, so I knew it was high quality. It was a gray Dodge Sprinter with a brand-new lift built in the back. It was perfect. We were on our way to the movie theater to see Forgetting Sarah Marshall. I had forgotten to pack the suction machine, so my lazy, pathetic ass sent Regina into the house to fetch it. She ran in, then came slowly walking back with the suction machine dangling from her shoulder and Kleenex in her hand. I asked her what the problem was and she answered, “Stana called me a ‘son of a bitch.’”

  “Jesus, she needs to stop doing that and show more respect,” I said.

  “I don’t say bad words because of my religion, but Stana is the son of a bitch, not me,” Regina replied, crying.

  In addition to setting Stana loose on Regina, my mom also started asking Regina to do demeaning tasks. At one point, she made a list of things Regina could be doing if she wasn’t watching my dad. Regina showed me the list. On the top of it was, “Pick up dog shit in the backyard.” Regina asked me if she really needed to go pick up dog shit in the backyard, and I reminded her that she was hired to take care of my dad, not to do degrading chores.

  “You don’t have to clean up dog shit in the backyard. But if my dad takes a shit in the backyard, that’s fair game,” I replied.

  My mom also started hiding food from Regina. Every Wednesday our awesome neighbor Nancy brought us dinner and a plate of sweets, usually brownies. I walked into the office in the back of our house and found my mom hiding in the dark, snacking on a plate of brownies. I flipped on the lights.

  “What are you doing back here?” I said, pretty weirded out that she was sitting alone in a dark room, just chilling, eating brownies.

  “I’m eating a brownie,” she casually replied, as if it was the most normal thing in the world.

  “I can see that, but why back here?” I asked.

  She leaned in and whispered, “So Regina doesn’t eat any.”

  “Mom, that’s crazy. Regina is upstairs taking care of Dad. You don’t need to hide,” I said.

  “Stana told me she saw Regina eat a whole plate of chocolate chip cookies. What if she comes down and sees me eating the brownies? She’ll eat them all,” my mom said.

  “Jesus, Mom. You’re insane. Do you need a Fentanyl patch?” I asked.

  “I already have one on,” my mom said with a smirk as she slid the plate of remaining brownies into her hiding place.

  Hiding food from Regina as if she were some sort of Brazilian Cookie Monster, specializing in brownies? Jesus Christ.

  The war had to end, but it seemed like it never would. Regina was now a crucial part of the picture, and all of our lives would be worse and more filled with ass wiping without her. We finally got my dad to tell my mom to back off of Regina. But she was a stubborn woman and wouldn’t let up.

  “Deb, lay off Regina. We need her,” my dad managed to say.

  “Yeah, Mom, you need to chill out. Be nice,” Tiffany said.

  “I personally love Regina. She might be the best thing that’s ever happened to this family,” said Greg.

  “No, Regina’s a fat-ass. I can take care of Dad way better than she can,” my mom said, nearly ripping his trach out as she adjusted him in bed.

  So we took a different approach. We realized my mom wasn’t going to change her opinion, so we started convincing Regina that my mom was insane, that she had a head full of Fentanyl, that she should ignore any crazy-sounding utterances by her or Stana. Her focus was to be on taki
ng care of my dad as best she could, and that’s it.

  A couple of nights later, to see if the strategy was working, I asked my mom how things were going with Regina. She answered, “Well, she doesn’t seem to be listening to anything I tell her, so I just ignore her back.”

  “So you’re cool with her?” I asked.

  “Yeah. She’s fine. I guess. She eats a lot, though, the fucking bitch,” she said.

  Success! Regina was now part of our crew. We finally had help. She was now on our team. She was in this adventure with us.

  “You feeling better about all this?” I asked my dad one night as I poured some of the yellow Promote into his feeding tube. He looked so much happier, so much healthier.

  “Regina is great,” he said back. “You doing better?”

  “Yeah, I’m finally sleeping, and I haven’t touched your dick in a couple weeks,” I said.

  “That’s a victory for both of us,” he joked.

  JESSICA IS NO SEEIN’ BRIGHT LIGHT OF FUTURE

  By late February, things were looking a little brighter at home. Regina was around more—even some weekends now—and my dad seemed to be hitting some sort of plateau. His mental health was getting better. He was still walking a little, and trying really hard in speech and physical therapy. We were optimistic that he could last a long time with this disease. He’d be like his idol Vince Senior from his support group meetings.

  My mom’s health continued to improve. Her hair was even starting to come back in. She was still overusing the Fentanyl patches, though, and was out of it for portions of every day. One step at a time, I suppose. Greg was loving his new reporter job. He had put all the sleeping around he was doing in college on hold for a bit while things were chaotic at home, but now he was starting to rev back up the old fuck engines. Tiffany was still juggling school, a job, and BCB’s big cock. I was even looking around for jobs in the Bay Area, thinking that maybe I could move back to California in time to save my relationship with Abby. We were starting to adjust to the situation and not let the disease ruin all of our lives.