Home Is Burning (30 page)

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 taking 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.