Wednesday, June 15, 2011

I am coming undone. During the past month, I've experienced ugly family blowups, orchestrated the fastest cross-country move on the planet, sent my husband off for a five-week-dream-come-true trip to the Middle East, and for just one night got out of town last week to Iowa to see some friends.

For the past three days (and the past ten, with the perfect vision of hindsight), my dad has begun a rapid decline. They have been here for, what, a month? So of course, I'm second-guessing everything. If we were still in Utah, then I don't know if I would have my kids with me. Sam is working on campus and taking a college class. I was coming unglued already in Utah-- but if I had known that he was going to start declining this fast, I would have probably just stuck it out there. All indications were that we probably had months. Oh, melanoma, you trickster. You fooled us all.

So, my mom and I, my three kids, and a couple of friends are holding down the fort. I looked at the clean dishes in the dishwasher this morning, the dirty ones in the sink, and then I turned and walked out of my kitchen to come over and be with my parents. Sam has been in charge of meal preparation. Some nice person-- probably Chris-- took out my garbage can for me this morning. I woke up this morning and immediately started to cry, and that was almost three hours ago, and I'm still at it.

Last week, I noticed my dad was very quiet and unresponsive. As in, I would ask him direct questions and he wouldn't answer. I thought maybe it was his hearing at first. He has been pretty quiet all along, so I didn't worry for the first day or two. Last week when I went out of town for the night, my dad started to get a bug in his ear about walking across the street to the hospital to find a pharmacy. My mom was wigging-- worried about traffic-- but it didn't seem unreasonable or dangerous to me, and I was kind of chuckling about it. But then I started to pay closer attention.

On Sunday night, I came over and brought dinner and stayed for awhile to watch TV and some of the Tony Awards. I was sorting out my dad's weekly meds, as I do on Sunday, and I noticed that he had not taken his morning pills four times last week. He was watching a loud baseball game and not answering me when I asked him about it, so I turned off the TV. He shrugged a lot and said, "Welllll," and "I see." It was very bizarre and that's when I started getting scared.

Monday, things started accelerating very fast. My mom called and said that my dad had slept in late and then when he got up, he didn't take his meds. A nurse and social worker came over and my dad was confused. They tried to get him to take his meds, and he kept putting water in his mouth, but not swallowing it. He was disoriented and non-responsive with them as well. I had my mom put my dad on the phone, and he was slurring his words as if he'd had a stroke, so I came over immediately and called hospice.

The hospice nurse who had seen him that morning told me that he had not had a stroke. This is what it looks like when the cancer starts really to hit the brain. It can often mimick stroke symptoms. She suggested that I seize control of the finances immediately, so my mom and I spoke with the social worker yesterday about my assisting her with paying bills and understanding what was going to happen next. My mother wants autonomy-- and I'm going to give her as much as I can so far as making sure that accounts are accurate and bills get paid appropriately.

I brought Sam with me and had him drive me. When we came in, my dad was sitting in the easy chair playing with his phone. I asked him if he wanted to call someone. Sam and I started taking little videos of him so I could send them to Matt and show him. I asked him if he remembered watching the Tonys with me, and he shrugged. I asked him if Martha Plimpton had performed at the Tonys. He said yes.

"What did she do?"

He shrugged and grinned.

I asked him again if he wanted to call someone. He said yes. He called Sam. I got a phone call from hospice and went into the hallway, and when I got back, my dad had called Loren (my nephew) and said, "This is Grandpa Creer. Here's Sam."

We stayed for a bit, and then went home because Mark was dropping off the younger two kids (Sam was already there because he had had class that morning). Then I got a call from my mom that my dad was in the lobby of their apartment building and that he wanted to go somewhere. So, we raced over again. My dad got up when he saw us and I said, "Do you want to go somewhere?"

He nodded. "Yeah."

"Where do you want to go?"

"The post office to get some stamps."

Sam went to pull the car around and my mom went to grab sweaters because it was chilly. As we stood outside watching Sam, my dad leaned in and whispered, "Well, I sort of want to go to the post office, and I sort of don't."

We got into the car and my mom helped my dad with his seatbelt-- she is the more cogent of the two right now, which is so utterly bizarre, it's hard to conceive let alone put into words. She said, "Tom, do you want to go to the post office?"

He shrugged.

I told Sam to drive to the post office, even though my dad has a roll of stamps on his desk.

When we got to the post office, we told him we were there, and he seemed surprised and no longer wanted to go to the post office. I told Sam to drive to the grocery store because there were a few things we needed anyway. My dad didn't want to come into the store, and my mother didn't have her purse, so I asked my dad for his wallet. We grabbed a few things. While Sam and my dad sat in the car, my dad pointed out, "See how that guy is walking? Plip plip plip."

Then we asked my dad if he wanted to go somewhere else.

"No."

So, we went back to their apartment building. My dad said very clearly, "Well, Pat, it looks like we're being dropped off."

"Well, we didn't know where you wanted to go. Do you want to go somewhere else?"

He nodded. "Longer."

So, I told Sam to drive out in the country for awhile.

Then, we dropped my parents off and went home for a bit to check on Christian and Tommy, and I had to run a copy of my dad's advanced directive to the hospice office. My mother called me immediately. "He's in the lobby. He wants to take off again. He thinks he needs to go to the cleaners."

"Just tell him I'll be there in five minutes, and see if that calms him down."

She called me again shortly. "Jen, nobody would help me, and I couldn't stop him. We're in the liquor store [right across the street.]"

"What is he doing in the liquor store?"

"Walking around and around. I can't get him out of here."

"I'll be right there."

Christian came with me and we went to pick them up. My mother was nervously watching out the door for me. I went in and my dad was staring down cases of PBR.

"Dad, do you want to buy some beer?"

He looked at me with surprise. "No."

"Well, I do." I grabbed a six-pack of cider and a pack of cigarettes, bought them, and got him into the car. I decided the safest thing to do would be to bring them over to my house so we could at least lock the front door and then tackle him if he tried to wander out the back.

It was about 5pm, so I put on the news in the TV room and set my parents up in there. Sam made grilled cheese sandwiches and soup for dinner, and I sent an email around to our family members apprising them of the situation. My dad did fine with the soup, but he kept eating bites of the sandwich and then not chewing or swallowing them until he gagged and it was literally coming back out of him. I ran for paper towels while my mom held his soup bowl in front of him and we had him spit it all out. I gave his meal to the dogs, and got him some yogurt, which he ate with no problems.

My friend Carol came over to hang out and we turned on a baseball game for my dad until my mom wanted to come home. When my dad was walking through my yard, he grinned at us and pretended to run away and giggled. We came over and got them settled and then I went home and collapsed.

Yesterday, my dad slept until noon. The social worker came over and we talked about the final days, signs of things to look for, that we were truly in the final stretch now. She gave us some literature to read and I went to her car and she gave me mattress pads and wipes and Depends.

I was here most of the morning, but when I ran home for a bit, my dad got up and showered and shaved himself! He was lying on his back, purple-faced, when I came in, struggling to get dressed. I helped him sit up, and he started vomiting. I had Tommy with me, so I had him grab a garbage bag and a towel and wiped my dad up. Then I buttoned his shirt and tucked his shirt into his pants and helped him with his belt. He want and sat on the couch, and I pulled up a chair next to him. "Dad, do you know what day it is?"

"Tuesday."

"Do you know the date?"

"Fourteenth."

"Do you know the month?"

He raised his eyebrows and gave me a withering look. "June."

"Dad, do you know that you've been acting a little bizarrely lately?"

He nodded. "Yes."

"Are you acting this way on purpose or because you can't help it."

"That one."

"You can't help it?"

He nodded again.

"Okay then."

We gave him a bowl of soggy cereal to eat and told him to chew and swallow each bite before swallowing. He gave me another withering look. I said, "Look, I know you can't help it, but I'm not going to let you choke either."

I asked him if there was anyone he wanted to talk to. He said yes. I handed him his phone and he called me. I answered it, "Hey Dad, how's it going?"

He boomed, "Mighty fine, mighty fine!"

I asked him if there was anybody else he wanted to talk to and he pointed to Tommy, so I handed Tommy the phone and they talked for a bit. I was amazed by his ability to put together sentences with a phone to his ear. I felt like I was watching an episode of House.

I ran home for a break and my dad fell asleep on the couch and pretty much stayed there until 5. I came and went and I really don't remember what else I did. Talked with Sam about dinner plans. Sam made chicken enchiladas on his own. I gave him some simple instructions.

At 5, I met Chris and we moved my mom's recliner over. Sam was here with dinner for my mom, and my dad had woken up and said he was hungry. My mom got him some yogurt and he put it down without eating it. She kept pressing him to eat, and I said, "Mom, they specifically told us not to push foods."

"Well, he said he was hungry."

"Once. The past 5 times you've asked, he has said no. He has yogurt in front of him, and if he wants it, he'll eat it."

My dad chimed in with an emphatic, "YEAH!" and nodded his head. He eventually ate the yogurt.

I had called Hospice when he choked on his sandwich Monday evening and asked if we could get liquid medications for him. They called me back Tuesday afternoon and told me that the doctor was removing him from his heart and blood pressure medication, and also the medications that keep him from shaking and the medication that kept the tumors from weeping and filling his abdomen with fluid (I guess it doesn't keep them from weeping-- it was a diuretic). That was probably the thing that struck me the most. The doctor removing him from all but palliative medications. Wow. Things just got real. Like they weren't already.

Last night I strongly considered not removing the meds. It took me a long time to sort them and return those pills to their bottles.

Sam brought the kids over and their dinner to eat here. While we were getting plates of food, my dad's sister Diane called. I put my dad on the phone because he seems to speak a bit better on the phone. He told her we were getting ready to go over to my Uncle Harold's for Thanksgiving. After he got off the phone with her, I called her back quickly, wondering if that had upset her. She thought it was pretty funny, but she also didn't get the picture of how grave his condition is until I told her.

After I came back to the apartment, my dad was sort of pacing. I said, "What do you want?"

"Well, I really want to get to Harold's for Thanksgiving!"

So, we ended up piling my parents and three kids into the minivan and going for another country drive. My dad noticed Christian's backpack in the car and picked it up and went through it very soberly, pulling out all of his school papers and studying them. He looked like he was traveling to go give a talk and reviewing his notes. My mom asked him if he was enjoying the ride and he started clapping his hands and said, "Yay!"

I went home for a couple of hours after dinner and then my mom called that she was having trouble with my dad fiddling with her phone and refusing to put on his oxygen and his pajamas. I went over and kind of gave him a stern look and he put his oxygen on. I chatted with him just a little bit and he mostly just raised his eyebrows at me, and then I said good night.

I am on one side fascinated by what cancer does to the brain. This morning, my mom left the apartment for a bit and then my dad opened the door, so I grabbed my keys and followed him. He went to the lobby, and saw my mom downstairs, so he walked over to a locked door and tried to open it. "Do you want to go downstairs?"

"Yeah."

"This way."

We went down the elevator and I said, "Have you ever jumped in an elevator?" and I jumped as it landed to show him. He came out and made a beeline for a hot coffee pot, so I stopped him. Then he wanted to go into the kitchen, and I said, "No, let's go back upstairs."

He is still incredibly strong. He stood his ground and my mom and I could not move him, so I sent her up to call Sam to come over, and my dad sat down on a stack of chairs, so I unstacked another and sat with him, asking him if we could go upstairs every so often. "No."

"Dad, do you know who I am?" He looked at me and raised his eyebrows.

"Jennifer C____."

"Just checking."

He got up again and went into the kitchen, wandered through it, opened the refrigerator and peered into it.

My mom called my phone instead of Sam's and left a message. She came back down and handed me my phone and asked my dad if he wanted some water. He lit up. "Yes!"

She got him some, and he spilled most of it down his shirt and choked on it. I rapped him on the back and he gave me that look of, "I know perfectly well what's going on," and I said, "Look, I can play a tune on your back."

The chaplain called and told me she was on her way, so we convinced my dad to return upstairs, and he ate some yogurt and drank some Ensure for lunch.

I'm not just fascinated by what's happening though. Oh no. I am also horrified, grief-stricken, and in shock. They weren't kidding when they said things can happen very quickly. I am also WILDLY angry. I am angry that my husband is having the trip of his life in the Middle East while I am wiping up my dad's vomit. I am furious that my brother isn't here because of his personal issues. Granted, it's also his health, but he's not here for ME, and I am absolutely fucking livid. I am livid that my 17 year old son is a greater support to me than every single adult relative I have. I have never felt more alone, more abandoned, or angrier in my life. And I am not going to fucking ask them to come. Because goddamnit, why don't they fucking know that?

Very nice people ask me what they need, tell me that if I need anything I should call them. I can't do that. I don't know what I need. I just need you to show up. And the angrier I get, the more withdrawn I feel. It's a vicious cycle, but I feel completely justified in my anger, and it's bigger than I am right now, and I. Do. Not. Give. A. Shit.