At the Foot of the Stairs

Free time

noreply@blogger.com (Jen) — Mon, 16 Jan 2012 23:11:00 +0000

I was walking down to my mother's apartment this morning to put her fentanyl patch on her, and I suddenly had an acute memory of last summer, during the week my father started going downhill so fast-- he was... evacuating his last meal, and we were waiting for the hospital bed to get set up, and I was sitting behind my father, propping him up so he wouldn't aspirate, getting his shirt off him and cleaning him up-- and I started to cry. So, I was in tears when my mother opened the door to me, and she hugged me, which was nice. Even though her moods are not completely predictable, she has offered me comfort during the time she has lived here-- and that is a great improvement, both in her condition and in our relationship.

I went home and my friend Chris had the day off, so he had come over and made some coffee and was surfing the net. I came in and poured a cup of coffee and cried some more, so Chris offered to take me for a drive to cheer me up. I have had some work done on the car recently, too, but it still doesn't feel completely right, so I wanted Chris to drive my car and try to diagnose it. We ended up going to the carwash, too. Then I ran Pat to to her doctor's appointment (naturally) and dropped her off (she did not need me to stay for this appointment). I came home and started working on my grant again-- a big grant that has been weighing on me. With an encroaching deadline.

And here's where the day started to get a little odd. I received an email from a contact at my client's site describing an insurmountable obstacle to submission. I called them immediately, everyone pretty much at the same time determining that there is no point in moving forward with the proposal. I unexpectedly now have more free time now. I was supposed to go to Hartford this weekend, and my mind keeps rubbing at the trip and preparations like a canker-- until again and again I conclude that that is no longer happening. I have been thinking about this for so long that my brain can't yet catch up with the change.

It would have been nice to get away for the weekend, even a working weekend. But it is even nicer to have this pressure off my plate.

Some friends and I have been talking about going shooting for the past three weeks, because the weather has been amazing. And every time, I have said, "No, I can't. I have to work on the grant." So, today, with temperatures in the low 70s, we got into the car with the windows down and drove out to the conservation area and shot 300 rounds of ammunition at these fun targets we have. And I didn't really think about much at all, just took in the landscape, with the sun glinting off wheat grass and turning it gold, the rare blue-ness of the Missouri winter sky, a few clouds, and hitting my targets.

It's hard for me to quiet the thinking that way. I don't hear voices-- but I am a wool gatherer and a ruminator, and it's rarely quiet in my own head. I said to Chris this morning, as I removed my glasses, speckled with the salt from my tears, blew on them and cleaned them on the bottom of my shirt (I know, I know), "I need a vacation. I just want to get out of my own head." The head that remembers sitting behind my father, the head that remembers the moment I realized that he was not going to take another breath, all of the images and moments from last year. I said, "I really didn't count on this shit coming bubbling up SIX MONTHS LATER."

Chris just gave me a look that said, "REALLY?" Like he has seen it coming for awhile, and that's probably the case.

It bubbles up, I cry it out a little, get on with my day. And so it goes.

Well, I didn't get a vacation, but I did get a peaceful, beautiful, sunny afternoon. I'll take it.

Getting to Nowhere

noreply@blogger.com (Jen) — Sun, 15 Jan 2012 00:00:00 +0000

So, Jen, How is Pat adjusting?

That is an excellent question.

Sometimes, when I think of what she has lost this past year-- her companion of 50 years, her home, a LOT of the possessions and furnishings she had treasured for years, her proximity to her siblings, her friends-- my heart breaks for her. I feel such sadness that I don't know how she can bear it. And then I remember psychology textbooks I have read about projection, and I wonder who I am actually sad for.

But what Pat has gained has been, in my opinion, valuable. I know that for her it doesn't compensate her for her losses; it certainly doesn't help with her [perceived] physical pain. And what Pat has gained is more of Pat. She can be kind now. She calls all of the other ladies over at St. Andrews, "Honey," and "Sweetie." They call her when she isn't out in the hallway, sitting in the lobby, or when they are going downstairs to make a pot of coffee, which they drink with powdered creamer.

She tells me almost all the time how depressed she is. She is seeing a psychiatrist-- at her physician's and her behest. But she has a community here. When I call her and she is with her friends, she gets off the phone with me faster than a teenage girl gets off the phone with her mother when she is at the mall pizzeria with her posse.

And why has she made these gains I mentioned? Because her considerate and intelligent physician is slowly weaning her off all of her narcotics. Boy, she may not remember whether I am leaving town for Hartford on Tuesday or Wednesday, but she remembers the word "loritab." Hydrocodone. House's favorite, and also Pat's. Perhaps that speaks to her good taste...?

Last summer, when she returned from Utah, she ran out of her loritab shortly after she got back, a full ten days before she could get her prescription refilled. Those were not good days. She would call me about every 15 minutes begging me to get her some loritab, asking me when she could get some. There was nothing I could do. The doctor and I discussed it, and how it affected her behavior, and he took her off it shortly thereafter. He put her on a longer acting painkiller, not a narcotic, that she takes 900mg of over the course of the day. That is the maximum dose. She doesn't think it does anything. Both the doctor and I have explained to her multiple times that the loritab didn't help with the pain-- it helped with her loritab addiction. It was a fix. And she insists that she was better when she was on it-- and of course, she has no recollection of those ten days.

I think I am portraying her and the situation more negatively than I intend, though. I am trying to set a stage by showing some of the things we've encountered this year-- but I have noticed a tremendous difference in her every time the doctor decreases her fentanyl dose. She becomes nicer, gentler, more thoughtful and considerate. She can conduct conversations with my friends that they enjoy (and not just at her expense). She scribbles down notes about the news so she can talk to people about it later. She remembers her grandchildren's names and things they are interested in. Unfortunately for Pat, she is not really on that list.

She also becomes more independent. She has gotten to the point where she can separate from her weekly medications (I set out seven days' worth every Saturday and call for refills when she needs them-- usually two or three a week) her medications for that day and the next morning, so there are days when I'm really busy and she tells me, "You don't need to come by today."

But I am distracted. I am so distracted, by work, by life, by the appointments I need to keep track of and drive her to, the children I need to feed-- and nourish. My dear friends. So, sometimes I am not very good at attending to her emotional needs. She hasn't been out of the house for a few days now, and today she wanted a new crochet hook. She wanted to run into Walmart to get it. However, Dash took the van and the kids had taken the car to their D&D game. So, Chris drove me to Farm & Home to get a snow shovel (Dash borrowed the other one, but we are going to need two anyway), these awesome spikes the kids and I put on the bottoms of our shoes (being absolute chickens on the ice), and to Walmart to grab a crochet hook.

Pat called me while I was at Walmart. "Be sure to get the ones with the flat tops-- you use the round ones."

"Mom, I'm standing here looking at all the crochet hooks, and they are all identical."

"I think it's a brand name. Let me go see if I can find it."

There was only one kind of crochet hook at Walmart. I almost sent her a picture of the display with my phone, but there is no way she would have known what it was or how to access it on her own. And I've seen the old ladies sitting in the lobby, trying to figure out how my mother's new Timex works. I'm not entirely confident they can figure out texting or picture messaging for that matter.

ANYHOO.

I grab crochet hooks. She calls me while I am at the checkout line, and I tell her I have to go. We get to her apartment, and I asked Chris to come in because I had to set out her pills for the week. She greets us at the door with, "I don't suppose it has ever occurred to you that I might want to get out of here once in awhile?"

And it sort of went downhill from there. She has also gotten out every single medication from the cabinet (including two she doesn't take anymore, but I kept on hand because they were just different doses, so could be used if she ran out). They were all out on the counter. She had a year-old list of her medications that she was consulting.

I said, "Mom, what are you doing?"

"Well, I put them out in alphabetical order."

"This list is outdated! And you don't put them out in alphabetical order. Did you read the labels to see what time of day and how many you're supposed to take?"

"We always put them out in alphabetical order in Utah."

. . .

She wants more independence-- but what she fails to comprehend is that as long as she keeps waiting for me to hand responsibilities over to her, she *can't* be independent. And it frightens me when she thinks she is capable of something-- like putting out her own medications-- when she isn't.

Winter is hard on both of us. I know I'm bluer when the skies are always overcast. I need the sun. I need to remember to use the lamp I bought to combat this. But the gloominess outside makes it harder to remember what I need to do inside to combat it.

I think of Pat and I limping along, going for our long country drives, both of us newly single and trying to make our way in a town neither of us has ties to-- a place neither of us can entirely understand ending up. We drive out on empty, twisty roads, taking in the barren landscape that is so stark that it fills me with the same pain and longing that I described above. We drive, talking sometimes, sometimes in silence. I take music with us. Sometimes I play ABBA, which she likes, and sing. Sometimes I play Josh Groban, because nobody else would tolerate me playing it in their presence. But no matter how long and far we drive, we always end up back at St. Andrew's. That disturbs me literally and metaphorically.

I'm back

noreply@blogger.com (Jen) — Thu, 12 Jan 2012 21:32:00 +0000

It's been slightly over six months now since my father died. If I had to account for how I am doing, I would have to say that I don't think I have even begun really to process the last year. It's too important to me to stay upright and functional right now.

Some of you know, some of you don't, that Dereck moved out over Halloween weekend. However, that is all I am going to say about that here. It is between the two of us.

So, my mother and I have found ourselves both newly single, and in some ways, I think that has bonded us. We are both navigating the waters of living alone (well, I live with the boys, of course), and I think that has actually brought us closer together. Pat lives here in town now. She lives just a little over a mile from my house, but I confess that I drive over to see her most days. Even though, this winter has been [perilously for the planet] exquisitely warm and mild until today. Today we got our first crispy bite of bitter temperatures and crunchy snow. No, scratch that: We had a little snow before Christmas. I remember being nervous to let Sam drive to school, but I let him, and he was fine. This morning, I worried less. However, I am still not comfortable with it.

Yes, Sam is driving now. Life marches on, doesn't it? He is now eighteen. He nailed his ACTs and has already been accepted to Truman for the Fall. Christian is 15, and had an amazing experience at the Joseph Baldwin Academy last summer that has sparked a philosophy, politics, and religion reading frenzy. Thomas, as he prefers to be called, has adopted the task of drawing a neighbor girl from Australia out of her shell, jollying the younger sister (who is facing the fact at age 13 that her mother is terminally ill) and taking both girls to Kum & Go and buying them snacks with his allowance. He is very tall, and he takes a lot of pride in his personal appearance.

The kids had a tough year last year too. Their mother was largely absent in Utah for the six months. Then, I was devastated over the summer. Then in the fall, their stepfather moved out.

My children have had to endure hardships, all of them, that I would never in my wildest dreams wanted them to have to experience. And they have emerged tall, supportive, brilliant, creative, loving, generous, empathic, funny, and strong.

For the past couple of years-- perhaps longer, I have struggled with my career. It has been a great blessing and I have been incredibly fortunate to have had the time to devote to my family. I am grateful to work from home and to have had the flexibility last year that I had. I have been privately griping, though, about the sacrifices to my career that I've made. However, I am now, unexpectedly, in a position where I might be able to return my thoughts to building a satisfying career. And that possibility has allowed me to see with clearer eyes the fact that all of the time and commitment I have given to my kids has yielded greater dividends than any supposedly great career could have. It's true that I have barely been published (except for copious amounts of blogging); it's true that I cannot, now, have a full academic career. I will never be a reknown scholar. I may never be able to teach at a university level full time. I passed up opportunities to perform in Community Theatre, because it was important to me to be home with my kids in the evening, to have family dinner, and to tuck them in. Some of the experiences I haven't had feel more like sacrifices than others. But no regrets. None at all.

The summer was strange and intense. Right around Thanksgiving, melancholy started to rear its ugly head. I find it very difficult to concentrate on work, and I think that last year's tribulations are starting to bubble up in spite of my best attempts to tuck them back down. I find myself listening to Pandora stations I create that play Don Fogelberg, Christopher Cross, James Taylor, Steely Dan-- a lot of stuff from the seventies. A LOT. I can tell that I am reverting a lot in my mind to the safer time in my life this music conjures. I am cocooning myself, with the music, in my last real period of innocence and happiness.

My days, these days, usually begin earlier than they ever have (voluntarily) in my life. I get up, I turn on Pandora, I lift weights or do the dishes. I actually enjoy cleaning and taking care of my home now. Sometimes, in the midst of these things, I take my coffee out to the studio and have a cigarette and a cry. I tell my friends that I feel like one of those punching bags you have when you're a kid. You can punch it for awhile, and it will fall back, then spring up. It does this over and over until it's a little deflated and then its ability to bounce back is inhibited until you blow it back up.

I'm back. I'm trying to blow myself back up. One word at a time.

noreply@blogger.com (Jen) — Wed, 15 Jun 2011 16:38:00 +0000

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.

Walking on his own grave

noreply@blogger.com (Jen) — Thu, 12 May 2011 18:15:00 +0000

Things have been very stressful and intense. I am deliberately not writing about it, because I need time and space from it. As I have said earlier about blogging: It happens in real time, so sometimes you have to take a breath and process and think and rest before you write about things. And sometimes you have to not write about them at all.

But the movers are gone, Dereck is here in Utah, my brother is in Colorado, and Dereck and I are flying with my parents back to Missouri on Tuesday.

This is a thing that is happening. We'll take our time, stay in a hotel that Tuesday night and pray the movers make it there before we do.

Yesterday we bought their cemetery plots, and here are some pictures.

Pretend they're worth thousands of words.

Caregiver Fatigue

noreply@blogger.com (Jen) — Sat, 07 May 2011 16:26:00 +0000

Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude -- from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able -- either physically or financially. Caregivers who are "burned out" may experience fatigue, stress, anxiety, and depression. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones.

What Are the Symptoms of Caregiver Burnout?

The symptoms of caregiver burnout are similar to the symptoms of stress and depression. They include:

Withdrawal from friends, family, and other loved ones.

Loss of interest in activities previously enjoyed.

Feeling blue, irritable, hopeless, and helpless.

Changes in appetite, weight, or both.

Changes in sleep patterns.

Getting sick more often.

Feelings of wanting to hurt yourself or the person for whom you are caring.

Emotional and physical exhaustion.

Irritability.

Very short update

noreply@blogger.com (Jen) — Fri, 29 Apr 2011 21:59:00 +0000

Things started to fall apart during my last week in Utah. By things, I mean me. We had some very very good news: My father continues to do amazingly well. It became clear during my last week in Utah that my father will continue to thrive, but that also meant that things had to change. So, we set in motion the grinding work of moving both of my parents to Missouri.

That work begins with convincing the parents that they need to do this. That was long, that was ugly, and after I got home from Utah, I slept for the first week. This has been my second week home, and I still feel tender, like someone has been holding me by the hair on my head, and my roots are aching. I don't feel like I can really put myself back into this ponytail.

And yet. I also found my parents a place to live, and so tonight, I board the train once more for Utah. My mother is moving out of the nursing home tomorrow. Matt is in Utah now. I am going there to help him navigate both parents as well as to haul ass, pack, and get this move on the road.
A few things make this harder and easier:

One of my best friends, John, is moving to Minnesota on Monday. We have said our last goodbyes. I get to spend the next two hours before the train leaves trying not to fall apart again.
I have to miss Dereck's birth, which sucks.
I don't feel like I've had enough recovery time to already be heading back.
This is the last push. The sooner I do this, the sooner I get to come back and stay.
Since my last writing, you would NOT believe how lucid Pat has become. And pleasant. And we can actually talk on the phone for long periods, and we do not talk about her pain. She mentions it in passing some, but I've actually talked to her a couple of times without her mentioning it all. Yes, Virginia, there is a Santa Claus.

I have booked three plane tickets back to Missouri for Wednesday, May 11.

Wish us luck.

Longing

noreply@blogger.com (Jen) — Sat, 09 Apr 2011 00:26:00 +0000

Before my dad was pronounced terminally ill, I saw him a few times a year for short trips. We spoke on the phone every week. He would call me on Friday mornings while my mother was at her hair appointment. So, I knew that I would miss him, miss those interactions.

Now, I live with him, and he's my constant companion.

So, before, when he died, I was going to miss an hour-long phone conversation, being able to pick up the phone and call him freely, and short visits. Now what the hell am I going to do when he dies?

_____________________________________________________________________________________

Last night, Matt and I talked on the phone for awhile about our options. Basically, we are trying to figure out the most ethical way to opt out of this. I am wondering who exactly we are worry about yelling at us for leaving, besides our parents and ourselves. I could put my mother into a nursing home, but I could not walk away, and now for a variety of reasons, she is coming back home.

If I can't even keep a pain in the ass like her in the nursing home, how am I supposed to put my cognizant father into one? And how do I spend, yes, 3 1/2 months now, taking care of things and then pull out before we're done?

I told Dereck today, "I would tell anyone else in my position that they should put their parents into a home and leave. And yet, oddly enough, I am actually in this position, and I can't walk away."

I struggle a lot with whether taking care of my dad is worth the separation from my family, whether it's worth the time I'm missing with my kids. But how many months did he change my diapers, get up with me in the morning, preparing my bottle while listening to the Beatles singing, "Here Comes The Sun"?

I'm pretty sure it was more than 3 1/2 months.

Sometimes I think the only way to do this is just to embrace it full charge, consequences be damned. I cannot anticipate all of the consequences or ways this could change my life. The world changes if a damn butterfly lands on a tulip, so how can I know what is going to happen?

This morning, my dad told me he was bored. I tried to rally and suggested that we could get out, go to a movie perhaps. It was a fitful day with me constantly wondering when or if he'd want to leave, so I wasn't as productive as I was yesterday. We finally got out of here after the Oxygen Guy came and brought a new thingy to put on his tanks. It makes it so that there isn't a continuous flow of oxygen. Instead, there is only oxygen when you breathe in through your nose. It makes a tank that would ordinarily last about 2 hours last more like ten.

Our nurse, Christian, had told us about a restaurant near Orem, in Lindon, UT, called The Smoked Apple BBQ. It reminded me of Tudor's Deli, for any Kirkatoids reading. We ordered our barbecue-- dad got the chicken, I got the brisket and the seasoned sweet potato fries. Frankly, when I got our food on paper plates with plastic silverware, I was a little disappointed that we hadn't gotten a little more, considering the cost.

That was before I had put any food into my mouth.

Yum. I snagged a menu and I'm going to scan it sometime and torture people with it. On the way to dinner, we stopped at the State Liquor Store. This time, my dad actually came in with me, though he didn't pick anything out. I was supposed to go to the grocery store and get more creamer for my coffee, but I solved that little problem by getting some knock-off Irish cream liqueur. Dynamite.

Now we are back, and it's not dark yet because it's April. But it snowed off and on all day, so it feels and looks like February.

I'm trying not to succomb to the Last Week Blues, the rampant self-pity and self-righteousness that governs my last week here before I go home.

Matt doesn't want to come back. I don't want to come back.

After my last post yesterday, Christian the nurse called back to reassure my dad that they would keep him on Hospice, just based on his weight loss alone, let alone the diagnosis. Christian is hard to get a read on-- he never really changes his tone of voice or inflection whether he's talking about The Smoked Apple, the NCAA, or my dad's cancer. So, he always sounds like this upbeat, friendly, Mormon, Utah boy. He still looks like a missionary. A missionary in scrubs. But mostly, he is trying to remind us that my dad still has cancer, no matter what.

I got on the phone with Christian and said, "He wasn't worry that you were going to kick him out of hospice. He thought that meant he was possibly getting better."

Christian told me on the phone, in his characteristic Christian way, "It would take a MIRACLE for his prognosis to change at this point."

He did not say it with the tone of someone who believes that miracles like this happen very often.

He went on to tell me that often hospice patients feel better than they are actually doing. Their sense of buoyancy and morale masks symptoms... like sleeping all day. I went into a different room and told Christian that for the past two weeks, I've been charting my dad's sleeping. He sleeps during the day more than he has regular meals: Once in the morning after he gets up, once in the afternoon, then in the evening. And this does nothing to affect his sleep at night, when he has had insomnia up to now, pretty regularly.

Christian said, "The cancer is still there, and eventually it will win. There could be a small number of subtle changes that suddenly just... take over."

When?

I read about melanoma online for awhile this afternoon, and it really seems that the one-year assessment we first got in January was wildly optimistic. Six months was more like it, especially after his scans revealed in January that the cancer had spread much farther and much faster than we had anticipated. But my dad is receiving more than (>) one-on-one care. Instead of eating out with my mom every day, he is getting home-cooked meals. He has the stress of his prognosis and the stress of boredom looming, but on the whole, things are pretty stress free right now. We will see what happens when Pat returns. Honestly, I don't want either of them to go down hill on this move home. But it is not lost on either Matt or I that we are longing to stop doing what we are doing, and yet the fact that we are doing it seems to be the reason why we are STILL doing it.

It's horrible. I want to go home. Apparently, that means that my father will be deceased, though. So, I can't want to go home, because I don't want to accelerate his death. But I also don't want to go to jail for leaving my parents alone here together. What is going to happen when one of them thinks they can drive?

Before Christian called, my father donned his coat and hat and went out to pick up the recycling bin. I watched him leave and said to the empty room, "Okay, I guess we're not dying now."

I went to the window to watch him in case he fell, muttering things under my breath like, "If you fall, I'm going to put you INTO the recycling bin and wheel you back to the house."

He ran into Norton and his wife in the road, so they stood and talked as the evening closed in around them. Something they have done before a million times and never thought about or appreciated.

I am sure for my dad, it felt great. It looked like the most normal thing in the world.

Hold the phone

noreply@blogger.com (Jen) — Thu, 07 Apr 2011 21:29:00 +0000

My dad just told me that his 90-day hospice evaluation is coming up. They will evaluate whether or not he still needs to be on hospice. The nurse thinks they will keep him on.

"But if they don't, then it will just be your mother and I here."

"WUT."

"Well, I'm not on hospice, you and Matt don't need to be here."

"Why would they take you off hospice?"

"Because I'm doing so well."

"Well, I don't think that means you can take care of Mom by yourself."

"Why not? She doesn't bother me the way she bothers you and Matt."

"Oh, I don't think that's a good idea."

My heart is pounding hard. What? What? They could take him off hospice? Which means, what, what have we been doing all this time? Why did we put our mother in a home?

You mean after all this, we might be all the way back at square one?

Which means that not only will this all have been for nothing (well, arguably, it has probably contributed to my father's thriving, according to the nurse today), but WE MIGHT HAVE TO START ALL OVER WITH THIS AGAIN?

Oh HELL no.

If they kick my dad off hospice, the parental units are moving to Missouri. I am so not making THAT mistake again.

SOMEBODY JUST KILL ME.

Trust me, you should think about your answer.

noreply@blogger.com (Jen) — Thu, 07 Apr 2011 19:55:00 +0000

It's always a little harder for me after I've been here for two weeks already. That seems to be when the homesickness starts to kick in.

I had a bad night Monday night, and then Tuesday morning, I was a mess. I realized that the housekeepers (yes, we have housekeepers. I know it's ridiculous, but would you want to put two people out of a job just because you can clean the house yourself, when you don't even want to?) had put one of my vibrams into a box of stuff that is still in the bedroom waiting to be sorted. I keep saying to it, "You've got to get yourself sorted," but it doesn't comply.

One of my vibrams was in the box. I pawed through some kind of slippery drape-like fabric, pairs of socks, plastic sock clips to keep them from getting separated in the wash, address books, pens, and soon I was dumping it all over the floor. No vibram. So, I put everything back, piece by piece. No shoe.

I dumped it out again. By this time, I was sitting on the bedroom floor in my T-shirt and black leggings and crying as I sorted through all this crap a second time. Where could they be? I looked into the box next to it. Office supplies and old calendars. So, I went downstairs, came back up, looked in the bathroom, tore apart the bed, looked in every bag in the room. No shoe.

By this time, the Certified Nurse's Aide (CNA) was here to help my dad with his shower. I didn't want him to see me crying, so while he was in the bathroom shaving my dad's face and chatting about the most horrible final game in NCAA history (also, sadly, probably the last basketball game he'll ever watch. I can't grasp that), I slipped out through the laundry room, into the garage, grabbed my smokes and a lighter and went to the front porch to smoke and cry for awhile more.

Eventually I went inside, made coffee, and found the vibram in one of the white garbage bags standing in the bedroom, ready to go to Deseret Industries. Why on earth wouldn't they put them in the same place? Of course, they don't look like shoes, so I can see why maybe they might have thought I wanted to get rid of them. The ladies are upstairs cleaning right now. Before they came, I hid my Vibrams in my laptop bag.

Part of my grumpiness on Tuesday was due to the fact that my dad and I were sort of bickering all day Monday about my mom. He spoke to a friend of his on Tuesday morning after the CNA left. He got off the phone and said, "Ken's worried about how you guys will manage your mom."

"Great. Thanks, Dad. I appreciate all of the votes of confidence we're getting on this. I'm worried about it too, but do you have any better suggestions?"

There are things about this experience that I am not blogging about. I don't write about my brother's experience with all of this, his complicated family dynamics, his persistent exhaustion after the stroke, his medical bills, how much his six-year-old has been missing him. My brother is also a writer, and he is working on his own story, albeit more privately. He is not, as he called me once jokingly, "a walking, talking blog."

Heather is writing a bit of her version of all of this here. And that post I linked to made me cry when I read it because I miss my children so much, and I am giving up, so far, a quarter of a year that I was supposed to have with them. And when I start to think of a) how much I've given up in order to be able to have that time with them and b) how I cannot get it back, I get very, very, very, righteously angry.

This is one of the main reasons I haven't yet returned Ryan's calls at Sunrise. I passed the buck to Matt.

I am also not blogging about some family dynamics and relationships because they are too private. This blog is published in real time. It's not like a book that can point to something in the past, when there has been time for resolution and healing. Or when you know the repurcussions and conclusions and how this all plays out so you know what would be important to include and what would be unnecessarily meddlesome and melodramatic.

I am also not blogging in great detail about money. But it's something I must address at least a little. One way of looking at my brother's and my ability to come out here and spend months caring for our father is that we are both fuckups without real lives, so it was easy for us to drift out here to do this. Well, we are not fuckups and we do have real lives and jobs.

I took off time from work until March. Then I started to realize that not only would it be a welcome distraction and make me feel less like I was in limbo. Also? We all like eating, shoes, and real beds. So, I had to start bringing in some income. My brother works when he goes home, on top of doctor's appointments and trying to help out with the kids, who are Heather's sole responsibility when Matt is here, and keeping up with everything going on out here. But we have also been letting our father support us when we are out here. While I am here, I buy groceries with my dad's Visa, and I pay the bills with his checkbook. If I need cash, I get it from his account. Same with Matt. In fact, my card started getting refused (well, okay, Pat's card) because Visa was baffled about why there were charges in so many different places. I had to call Visa and put my dad on the phone to authorize our using it.

So, my dad is supporting himself and whomever is living with him at the time, providing some financial assistance when we go home (and paying for our transportation to and from), paying medical bills, buying groceries, continuing insurance and housing memberships he probably won't get to use, as well as paying for my mother's nursing home. Which is exponentially expensive, and does not include: Her beauty salon visits (including manis and pedis), her new glasses, her medications, her bank account, or all of the supplies she needs constantly. So, that brings our monthly bill for my mother to about $5K a month. It's gauche to talk about money, but useless not to in this circumstance.

So, for the nursing home to want to move her yet again and increase that bill by $300 a month-- we are already pouring out more than my poor dad is bringing in. So far, even though I've been working, I haven't sent a single invoice for 2011. And I still have bills I'm paying at home with savings.

So, what would you do? Would you keep your mother in the crappy, expensive nursing home and know that you will run out of money before your father dies and be living only on credit (which will kill him)? Or would you find another nursing home that could save you $1000 a month. That still will not solve your financial woes. You will not be able to afford a nursing home for your mother while your father is still alive. In-home nursing care? Too much. Putting them both in a nursing home and closing up the house? Well, you would have to get your cognizant father to agree to that one. Would you put her in the really shitty, bare-bones assisted living place right up the road? Or would you bring her home and enroll her in the daycare that is even closer. And make as many trips to the liquor and tobacco store as it takes to get you all through this.

Dereck tells me he has never heard of anybody doing what we are doing, both siblings taking turns for this length of time to care for their parents. I don't know that I've heard of it either, but honestly, I am just doing what it seems to me are our best options. However, sometimes if I find a solution that appears to be working, I stop searching for better ones. I nursed my kids and co-slept because I couldn't bring myself to let them cry. I regret that, but honestly, at the time, maybe it was because of all the hippy books I was reading, I didn't realize that I had other options that might have made my life a little easier and have made me a little less nuts. Is that what is going on now?

What on earth do other people do?

What are YOU going to do?

Heisenberg, go skip a rock

noreply@blogger.com (Jen) — Tue, 05 Apr 2011 00:40:00 +0000

He doesn't like how much time i spend on the computer, though if I don't have that stimulation, I get depressed. And it doesn't really seem to make much difference whether I'm on the computer or not as far as how much we talk.

My brother and I have been trying to decide what to do about our mother next, and decided today to bring her home and enroll her in daycare (I sound like I am adopting a baby).

So my dad and I bickered about that. He is worried that it will be the same as it was before she went in. My unce Burke is worried about that. But at that time, my father's death was imminent, it was all so new and the grief so fresh and the stress so great that we just had to get her out of our hair so we could breathe and think for awhile.

I am not looking forward to having her back. But short-term, it seems cruel and unnecessary to put her in just another home that she will feel lonely and abandoned in. I am having some major guilt lately about having done this to her at all. Burke thinks that both of my parents have thrived away from each other and he is worried about her drug use increasing, etc. He is worried that they will both decline, that this will accelerate my father's death.

I won't keep her at home if that is the case.

My father asked what would happen next if we couldn't handle her at home.
"Well, I'll tell you what'll happen next. You and Mom and I will move to Missouri and Matt will go home and get a full-time job."

"I'm not moving to Missouri," he said.

"You will if that's the best option!" I snapped.

"You seem to think I'm going to live a long time, and I don't think that's the case. It only takes one system to fail. One system out of three. And after that, it will go very fast."

I don't know what to say. No, I don't think his death is imminent. I sort of want him to get scanned again so we can see if he's in remission-- that is how good he looks. We thought that he had been sleeping more because we learned on Sunday that one of his oxygen tubes had pulled away from its machine, so he wasn't getting his full dose of oxygen for at least a day or two, I'd guess. I saw the tube on the floor, but I didn't know it wasn't supposed to be on the floor.

It has been almost 36 hours since we fixed it, though, and he still falls asleep on the couch in front of the television. And it doesn't seem to be hindering his sleep at night.

I suppose this is a metaphor for life, full of uncertainty, because none of us can really be sure of anything. But right now, rather than a microcosm, it feels infinite and heavy.

It's so hard to know what the right thing to do is. I hate to make so many mistakes, but I'd rather make mistakes and get to the right thing than be complacent and culpable.

Chopped Liver

noreply@blogger.com (Jen) — Mon, 04 Apr 2011 21:25:00 +0000

My dad on the phone to his friend Bob:

"She's not happy there. Yeah, well, they think they can take care of her here. We'll see. I'll love having her here-- it'll at least be someone to talk to."

About Face

noreply@blogger.com (Jen) — Mon, 04 Apr 2011 01:00:00 +0000

It's not like she didn't warn me. She told me she couldn't bear to move again. Yet, every single day she would say, "I hate this place. I see so many injustices here all the time," and then so would begin the litany of complaints.

I didn't imagine that, right?

Today, Burke brought her down to The Charleston. She wrinkled her nose the second she walked in. "I don't like this place," she told me.

"Well," I said cheerily, "let's just look around!"

"It's not as nice as the place I'm in now."

"Well, when we are done here, I will show you your other option, and then maybe you'll appreciate how nice this place is."

The cute girl, Michelle, who showed us around yesterday came from home (she still lives with her parents) to give us a tour. I introduced my mother. "Michelle, this is my mother, Pat."

My mother said, "I don't like this place very much."

We started on the tour to see an empty studio apartment so she could see how big they were. "This room is cold."

"Well, Mom, that's just because it's unoccupied right now."

"I'll need it warmer."

Michelle showed her the adjustable thermostat on the wall. My mother squinted at it for a moment and said, "I often have trouble with those. Those are tricky."

Michelle said, "All of our CNAs can help you with that."

We went back into the hall. "There aren't any chairs or sofas to sit on."

"Well, let's go up to the library," Michelle said. We got into the elevator to the second floor and there were two inviting, green sofas near a railing that peered down onto the lobby, where there were clearly four easy chairs before the fake fire place, as well as two ladies sitting in them. We went into the library, and my mother kept muttering, "It's cold here. There's just a cold feeling here." She'd look up and say to Michelle,

"Where I am now, it's just got a homey feeling. There is no homey feeling here."

"Well, a lot of the residents are watching Conference right now."

"The place where I am is homey and has a family feeling. Everybody is like a family. And we all sit in a circle on comfortable chairs and watch movies."

"I can take you to our activities room," Michelle smiled nervously. She is too innocent to be smooth and is a little hurt by my mother's barbs, but trying gamely to be soothing anyway.

On the way, we passed by the room where a lot of the residents were watching Conference. It was a room they use for church, and everyone was dressed up. This man in the back wearing a suit kept standing up and waving us over to chairs near him. He was too young to be a resident, so probably part of the Branch Presidency (ministry). I shook my head and mouthed that we were just looking. He kept waving his arms commandingly like someone who expected to have his orders followed, so I took particular delight in coolly looking away from him and ignoring him.

But surely we would have benefited from hearing church leaders admonish all the young men of the church to marry.

My mother's mantra became, "This place doesn't have a family feel to it," and she would take the middle and ring finger of her right hand and draw a circle in the air with it, presumably indicating family. That would make sense-- Families are Forever, the circle represents eternity. Kidding.

I told Michelle, "I think she has had a hard week. She is a little nervous."

My mother and Burke walked behind us, my mother calling, "Jennifer, I've made up my mind."

We were sitting in the lobby when a resident asked for Michelle's help finding something. She took his hand and looked at him and said, "Yes, absolutely." She turned to me and said, "Would you excuse me for just a minute?" And took the resident to help him. We decided to get my mother out of there, so when Michelle came back into the lobby, we were on our way out, and I stopped and shook her hand. "Thank you so much for coming in today, Michelle. We'll be in touch."

True to my word, our next stop was the Canyon View Assisted Living place, which my mother completely dismissed as a possibility. She didn't take it seriously one bit, and maybe my body language was just screaming that I wouldn't really move her there. I liked it better today. We walked in and a group of residents were sitting in a circle watching Conference. They beamed as we came in. New faces! We asked if we could look around, and the young girl on staff showed us the available rooms. My mother walked in and out again, continuing to talk about why Sunrise is so much better than The Charleston.

To my credit, I was patient with her all day. Even when she started saying that she was just an object with no say, that I had obviously already made up my mind (on The Charleston, because she dismissed Canyon View, which makes me like it more every second), that she only wanted to stay at Sunrise.

"But Mom, you have been asking me every single day to get you out of there. You tell me how much you have deteriorated. And none of the things that I don't like about that place are solved just because you now love it."

She pouted in the passenger seat of Burke's car and I kicked some slushy snow and wished I could smoke a cigarette.

"I'm sorry, Jennifer, I'm so sorry, I'll never go it again. Will you forgive me?"

"Well, Mom, when you tell me for two months that all you want is out of that place so then I take steps to make that happen, you can't suddenly tell me that you're happy there."

"So, you've already made up your mind."

"No, we are not making any decisions today."

"Then can I stay where I am?"

"I am not making any decisions today."

"I get no say in this, then, right? You just get to decide what to do with me and I'm like a ball. Being bounced around."

*Sigh*

After we got back to my dad's, I did sneak off to smoke. She had been there less than an hour before she and my dad began bickering. My dad told her everything I had about how much she hated Sunrise, about her falling, about the fact that once she was moved to the Alzheimers and Dementia ward, she no longer had a necklace or bracelet she could use to call attendants. She has only a pull cord by her bed. So, when she fell out in the hallway, she had no way to call anyone except her voice.

He talked about her roommate, "I'm attached to her now," how small her room is, "I'm used to it. In that other place, I'll just be alone and lonely in a big cold room."

SERIOUSLY?

It comes down to control: She wants to make the decisions. When she had to stay there, she chose to leave. When I finally saw the light and took steps, her way of seizing back control was to turn every negative thing she had every said about Sunrise into a positive.

Fortunately, I knew that arguing with her was pointless-- technially, Canyon View meets all of her requirements for warmth, coziness, small, and family-like. She will change her criteria the second I meet it. Because I forgot that the number one thing you have to remember about Pat is that she doesn't like anything (unless you are going to take it away from her, apparently).

Then, my dad finally got her to change the subject.

Be careful what you wish for.

"So, you're working on your memoirs?"

"Yes."

"Do you have a lot of funny stories in there?"

"Yeah, and I had a funny one about you in there." And he went on to tell Burke, in front of my mother, the story he had sworn never to tell! But she was mad.

"So,your funny stories are all at my expense."

No! Pat, it was a funny story. You know, Burke, I saw this doctor in the parking lot lighting a cigarette with a trembling hand, and I think that was him," and he laughed. Sometimes my dad laughs so hard that he leans forward and almost falls out of his chair. Then he slaps the floor, laughing.

"I bet there are a lot of funny stories about me in that book," She said primly, pursing her lips.

"And Pat, there are a lot of funny stories about me too. Like the time we borrowed the mimeograph machine to run off my dissertation. And you said you knew how to use it."

"I knew how to use a lot of equipment back then!"

"And you pulled the lever back and the whole thing got jammed. And then I dumped that stuff on the floor and tried to clean it with acetone. And it burned a hole in the floor. The next day, I got to work and they told me, 'Boy, the director wants to talk to YOU.' So I went down there and they never let me touch any of the equipment at the VA hospital again."

Then my dad went on to tell the Mr. Joseph story for Burke. I wondered how many times Burke has heard that story over the years. He has known my dad since birth.

So, my mom then kept saying she wanted to read the autobiography.

"Well, it's not finished yet. And you've never read anything else I've ever written."

"Well, I want a copy of every book. And I know that if you wrote it, it's excellent."

"How would you know that? You never read it."

"But I want to read your autobiography..."

I started to wander in and out at this point, sneaking out for a smoke, then coming in and pretending to work on a grant on my computer in the corner recliner, while actually talking to my friend Chris via instand message.

My dad's position on the whole nursing home situation is that he'd LOVE to have my mother back home BUT... And that I need to call the social worker and then go look at every nursing home in Provo.

Matt and I agreed that we would both crunch some numbers this weekend. Even with my mother in The Charleston, even with the money we would save from Sunrise, it's untenable.

I sent out a text: "After having crunched the numbers, have determined PC to be redundant. Recommend downsizing."

I got the following responses:

"Have you read Lovecraft? You can alwaze chain her tp in the attic."

"So... Alaska?" (That was from Sam who volunteered to research roundtrip plane tickets to Alaska to find an ice floe: $1500 each)

"Is this a Logan's Run kind of thing?"

"Can you outsource her job to India? or replace her w an undocumented laborer?"

I'm sure my headache is only from the four inches of show we woke to today after I wore a sleeveless dress and flipflops all day yesterday.

I'd like to thank...

noreply@blogger.com (Jen) — Sun, 03 Apr 2011 02:50:00 +0000

... my mother's nursing home for continuing to provide me with such good material.

Yesterday morning, Matt and I talked again. We decided not to decide anything until Monday, because we need time to think. I made a list of the pros and cons of bringing Mom home versus finding another nursing home. Then, when I was just sick to death of worrying about it, my dad said, "How'd you like to go get a buffalo sandwich?"

"I'd love to. Let me take a quick shower."

At first, I thought he meant buffalo as in buffalo wings. No, he meant buffalo as in herd, not New York. With him directing me, I drove up Provo Canyon to Heber City, Utah, where my maternal grandparents are buried. There is a really, really, really great place to eat there called Spin Cafe. (Private to Grand Marais people: Think The Wild Onion).

My dad got a buffalo burger, but I got a grilled cheese sandwich with pulled pork, tomato, and avacado. It was fantastic. Then, we both got a small serving of gelato and sat and ate it with tiny spoons. It was such a beautiful, balmy day and the cafe was really nice. I will remember that day. My dad was in a good mood, and I caught him on film [Fine, I caught him on whatever you catch people on now with digital photography], goofing around with his new sunglass-clip attachments.

Next, he had a couple of checks to deposit, so we went to the bank. The ladies who work at the bank adore my father. He is always gracious and friendly and they came around and asked him for hugs. The one I know the best told me he looked better than he has in months. This is true.

Then, we went to CostCo, but by that point, we had probably stretched him to his limit. We walked to the back to get gatorade and then he had to go sit down and wait while I zipped around.

So, I'm in CostCo, a Friday afternoon, and it's jam-packed. But I know my way around now, and I know what I want: stuffed salmon; beef tips I can marinate in wine to tenderize, huge bowl of fruit with mango, grapes, strawberries, cantaloupe, and pineapple. Tomato-Basil and Chicken Tortilla soups.

While I'm cruising around grabbing things, I call my mom. I've tried her before during the day, but she has not been in her room. I was curious to know how they are treating her after Thursday. She told me she had not received her pain pill the previous evening. Get this: Because her doctor has ordered them to be given "as needed," my mother has to remember to wake up and ask for a pain pill in the middle of the night. And if she doesn't do it at the right time, they won't give it to her.

In the past, I haven't thought I could really do much about things like this. But after Thursday, I decided to take my Bitch out for a test drive.

So, next, I called the nurse's office at Sunrise. I didn't know whether or not my name was mud yet, so I lied and said I was the nurse from her doctor's office. But when I got through to the nurse, this thin, fish-faced woman who always pulls her brown hair back into such a tight bun that I think she is doing it as wrinkle prevention, I identified myself. I said, "My mother just told me that last night she did not receive her pain medication."

"That's right. They are given as needed and she did not request it."

"The woman complains about pain all the time. What makes you think it was not needed? Are you serious that you are going to make an elderly dementia patient REMEMBER to wake up and ask for her pill? If she doesn't get it, then it sets her back the entire next day with regard to her pain. I DON'T EVER EVER EVER WANT TO HEAR THAT SHE DID NOT GET A PAIN KILLER AT NIGHT AGAIN, ESPECIALLY WHEN SHE DOES REQUEST IT. Do you understand me? Because if I do, I am going to come in there and YOU ARE NOT GOING TO BE HAPPY TO SEE ME. WHAT THE HELL IS WRONG WITH YOU PEOPLE? WHAT IS GOING ON UP THERE?"

"Are you ready to speak civilly to me now?"

"Nope." And I hung up.

Next, I called the doctor's office and talked to a medical assistant several times. My mom's doctor won't order her to have a pill every eight hours because she doesn't want her to be over-medicated. Huh? I get that if my mother doesn't wake up that the doctor could argue that she didn't have need. Except when she did wake up and ask for it, they refused to give it to her. And again, if she doesn't have the pills every eight hours, then the pain gets ahead of her. Every eight hours. That is what I'm asking for.

I got the doctor to say that she had to have her last dose at bedtime. But my mother still has to ask for every pill she gets. Jesus Christ, no wonder all she talks about is her fucking pain meds. If she were to forget to ask for that, she knows what would happen.

The medical assistant told me that their entire office thinks Sunrise at Sandy is insane because when the doctor ordered an over-the-counter analgesic cream for my mom and said, "Use as directed," Sunrise told them they couldn't accept that general of a physician's order.

The whole time I'm navigating these phone calls, I'm also getting checked out at CostCo and getting my dad and our groceries into the car. We got into the car and my dad said, "I'm out of Oxygen." Fortunately, we were very close to home and we had another tank in the back seat. But I was still nervous. Then, when we got home, he slept in front of baseball for a long time. This morning he told me he thought maybe yesterday was his last trip to CostCo, but I pointed out that if that were our only outing, he could probably do it. He's concerned about his recent fatigue. Or, he was before I took a power nap that lasted three or four hours this afternoon.

This morning, I toured another nursing home that is about 20 minutes from their Provo house, with my uncle Burke. After I got hopelessly lost for about 45 minutes trying to find it, that is. But getting home was fast and easy.

I asked a lot of questions about how medications were dispensed, whether my mother could have her OTC eye drops (she can't at Sunrise, though Burke and I were laughing that we both spend $50/week on eye drops for her that keep getting confiscated). The girl who was giving us our tour this morning looked at me funny on a couple of the questions, which is the reaction I was looking for. More evidence that the way things are done in Sandy are insane. I told Burke this morning when we were standing by our cars after the tour, "It's like the people at Sunrise have never met an ~~old~~ elderly person before.

Also, the fee schedule is different at The Charleston: They don't base your medication fee on how many medications. They have other patients with sleep apnea machines. Their studio apartments are bigger than Sunrise and the pricing is better. They have a fully-stocked library and two floors, no lock-down unit, and refrigerators, microwaves, and small kitchen areas in every apartment. Nobody has to share a room.

It's still expensive, but we would save money there, and possibly be able to stretch things farther. But we are all getting nervous about how long we can support two households. IF they are good and decent and don't pull the crap that Sunrise has pulled, then I think they would probably be great. But Matt and I are both as gun-shy about the whole situation as a divorcee in Vegas. I really liked Sunrise. I should have known something was hinky when they refused to put her pain patches on her at first and we were running up there all the time.

I asked what would happen if my mother fell, if she had a cold and needed a doctor, if she had a cold and needed cold medicine, ran out of toothpaste, etc. The answers were all how the nursing home would take care of her-- the girl who was giving us the tour has only been in marketing about a week. She started working there in the kitchen. She has been there for four years, and she seemed pretty happy. She said she lives a minute away, so she could come and make a dr appointment and take my mom if she needed it. She wasn't a smooth salescheck like Becky at Sunrise. She didn't do a hard sell at all. She just showed us around and gave us information about activities and events and asked if we had questions. We looked at their one-and-two bedroom apartments as well. We talked also (shhh) about whether my dad could live there also... right now, they don't have availability, but...

Burke is concerned about how long I can do this without cracking up. He put his arm around me and said, "I know you think you can do it, but I worry about you."

I wonder if he is also worried about how well my mom and I would get along if we brought her home. He said, "Do you remember what you were like when we were moving her into Sunrise?"

Yep. Yep, I do. And if I didn't, I could read all about it to remind myself.

I stopped and looked at another Assisted Living place on the way home. I pass by it all the time. It's maybe 5 minutes away. I mean, I could jog there (it would be a pretty good run though). I'm not going to lie: The word "dump" crossed my mind. There were two "houses" that looked pretty residential. They were clean and orderly, and the people seemed only to be watching television intently-- they didn't look any worse or better than any of the other people I've seen in facilities lately. There were two women on staff, one in each building, and I saw a few women in a back room who were wearing scrubs and looked to be having a meeting. I asked a few questions. The bedrooms are small, and there are communal showers in the center of the buildings. That may not go over so well. The rates were great, but well... I didn't see any cockroaches, which was Matt's minimum criteria (I jest). The best thing would be that I could go over there and get her a lot, and take her to the daycare down the road here sometimes (the price is that good).

But all day, I've been thinking about both places, and I keep leaning toward The Charleston. Okay, I'm a sucker for elegant surroundings. But I didn't even realize how much guilt I've been harboring for putting my mother in a facility to begin with. I feel badly for her every minute she is at Sunrise.

This evening, she called and I spoke with her. She keeps telling me that she just wants to come home and lie on the couch and be here, and usually I just let it go by without comment. This time I said, "If I were even to consider entertaining that idea, then would you be opposed to sleeping in the basement so Matt and I can attend to Dad?"

"No, I like the bed down there."

"Also, I would want you to go to daily activities down the street so you can have social contact."

"Well, it would depend on how much pain I was in."

Oh, no, actually, it wouldn't. If we were to move her back in here, there would be some pretty inflexible rules, particularly governing how often she can see a doctor. Does it seem cruel to tell her she can't go to the dentist every single month? I don't think so. She says now she has a toothache. Well, she *just* saw a dentist. She wants to go back to her dentist. And this is how she starts winding me up. So, that puts me in the position of tending to ignore all of her health complaints because in addition to everything else, she is a staggering hypochondriac.

The Charleston has a physical therapist on site. They have an exercise room, go to Walmart on Mondays, but they can pick things up for her and add them to her tab (they refused to do this at Sunrise and looked confused when I requested it; additonally, my mother's excursions have abruptly ended with her transition to the bottom floor of Sunrise), and a podiatrist comes monthly to cut toenails. I asked how much extra it would cost to help her trim her fingernails, and that was another question I got a weird look about (yes, it costs extra at Sunrise).

I got home around noon and told my dad about both places I had looked at. Then, I am not sure what I did-- probably checked email and Facebook. I was so exhausted that that's when I went and took my power nap. I woke up thinking that I'd been asleep all night. It was 4:50, so I told my dad I had to run to the grocery store for a few things-- we don't need things like milk, butter, eggs in CostCo bulk. When I got back, he asked me if I had also gone to the liquor store because I'd been gone so long (I was gone for 25 minutes). I said no, and I hadn't. My dad's teasing about my alcohol consumption grates on me. I don't like to give him ammunition. I said, "Should I have?"

This is the General Conference weekend for the LDS Church, a world-wide conference broadcast from Temple Square in Utah. My friend Barbara works doing survey calls for Nationwide, and she texted me that she had just called a lady in Utah. "I heard organ music in the background. And lots of cats. Is that normal?"

I explained that the lady was probably just watching conference on her television. Yes. Everyone does that. Everywhere I went today, people were watching it, or cars were spilling out of church parking lots because you can also go sit on the pews at church and watch it on television. Less alcohol and popcorn there, though. Or you can try to cram into the Tabernacle or sit on the lawn outside it at Temple Square, as some college friends and I did some 24-odd years ago. In our Sunday best.

So, in order to celebrate General Conference, we went on a Daddy/Daughter date to the State Liquor Store, which closes at 7pm. On a Saturday night. We got there at 6:35pm. Phew!

Next, we came home and I had my dad call his Visa company because they started turning down my card on Wednesday, and I finally figured out that it's probably because the company probably thinks the cards are stolen. He told them to authorize Matt and I using the cards.

Now, we are watching the UConn/Kentucky game and I'm finishing this up. Then, all I want to do is watch television (watching the first season of Leverage these evenings) and try to shut off my brain.

Two-Faced

noreply@blogger.com (Jen) — Fri, 01 Apr 2011 15:23:00 +0000

Last night I told my brother that we were bringing Mom home and we were going to take care of her here and enroll her in the day care down the road. There was a silence.

"Um, I think that is something that should have been discussed with me."

I went red in the face even though I was on the phone. I had already told Burke to bring her home today. I had told my dad we were doing this. But Matt was right: He needs to be an intricate part of the conversation.

He said, "What happened to putting her in a nursing home in Provo?"

I called Burke and told him to hold off. Burke, trooper that he is, immediately offered to help me find a place nearer to where I am for her. I am not sorry that I gave notice at Sunrise. I may have even mentioned something yesterday about making sure that everybody we know hears about how shoddy that place is. I may have mentioned reviewing them on the Internet, too. Apparently, word of mouth is important.

The next and trickiest challenge was going to be telling my dad that I had changed my mind AGAIN and we were NOT going to move her home.

I laid some groundwork when he went to bed last night. "You know, Dad, I think we need to think more about this situation with Mom. Lori said yesterday that she thinks one of the reasons you are doing so well is that Mom isn't here."

"That's not it," he told me.

I didn't say anything else. I'm not going to fight with a dying man before he tries to sleep, when sleep is often elusive for him. I had pushed enough. I did dread the conversation we would have today about it, though.

Fortunately, he introduced the conversation first:

"You know, Jen, I was thinking about what Lori said, and I think she has a point."

Then we went back and forth about how difficult she is and what it would *really* be like to have her back at home, so he agreed pretty readily to finding a place in Provo.

I feel like I dodged a bullet. So, now I have some time to find her a new place.
Dad pointed out that yes, it might be less expensive to have Mom at home, but not if we are all crazy. There are more expenses than just the ones with $ signs attached. He went on to talk about how she picks fights with me and Matt, that she always starts it, that it's particularly tough on Matt, and it all stressed my dad out. We have a pretty peaceful setting in the house right now, and upsetting the balance would not necessarily solve anything.

So, there's that. But before I can find my mother a new nursing home, I have to figure out what went wrong this time.

I am a nice person. To a fault. I like for everyone to get along. I like people to walk away from our interactions feeling good. About me. About themselves. About everything. But mostly about me.

This is partly innate and partly how I was raised. I was raised by people who don't like confrontation and don't like to make a fuss (which makes my mother's current personality particularly interesting. Who knew she could become such a fierce advocate for herself? Even with dementia?). I was raised by people who can be terminally polite. I grew up eating cold french fries because to send them back was too much fuss.

But this is also tatamount to being taught that we don't deserve hot fries. That it's more important for us to suck up shitty service than to inconvenience the teenager who has to make new fries, which cost the restaurant NOTHING.

My therapist used to ask me, "Why do you always think you have to be nice?"

She was serious, but I did not understand the question. Why on earth wouldn't I be nice? I think I always have to be nice because people should be nice!

The problem is that I have a temper. And I've done a pretty good job of mastering it in my adult life. Frankly, it scares even me a little, because I have gotten more control at NOT exhibiting it than in wielding it usefully. It's a tool I haven't developed because I fear getting burned. I think it's time to take it out for more rides and learn to channel it a bit.

I made a mistake when my children were growing up. Well, let me backtrack a little bit.

When Christian was very little, he was in speech therapy. Unfortunately, I lost my temper at the speech clinic with consequences that pursued me for years in one form or another, so again, I learned to fear it. My main problem is that I am nice, I am nice, I am nice, I am nice, and then I explode and worlds collide, the sun burns itself out, and the city is left in ruins. I have a slow burn, but then WOW. It's white hot.

I need to learn to just stop being so nice from the beginning. It will spare people exposure to that temper in the long run, so really, I'm just going to be doing people a favor by getting in touch with my inner bitch.

The mistake I made with my children was this: When Tommy, in particular, was very young, I tried to support his teachers. I knew that he was hard to manage in the classroom. His father and I staunchly refused to give in to teacher pressure and medicate him. Children are being vastly over-medicated in this country, and he was so little (kindergarten) the first time they tried to get us to medicate him. But I would try to work with the teachers on motivating him, I would discipline him at home for poor school behaviors. We tried a lot of sticks and carrots over the years.

But one of the things I learned (sadly) from trying to work cooperatively with the teachers is that I was, in essence, giving them license to treat my child poorly. Because that was the result. Over and over and over. So, eventually, I stopped sympathizing with the teacher about my willful child and started going in to meet teachers with more of a glint in my eye and more protective of my child, classroom order be damned.

That may not have been the best approach either-- we just started him, via mutual agreement, on ADD medication. We think it may be the only thing that can help his studies now. But he's 13 now, tall, and his body can take the meds better. Should we have done it when he was ten? Probably. But you do the best you can with the information you have. And Christian's diabetes distracted us for a good long time as well.

I made the same mistake at the nursing home. The staff at the nursing home, though, are not your friends. They are your service providers. And being nice to them only means that they are going to think they can treat your loved one like crap, ignore their needs, be completely dismissive of them. So, this next time, I am going to go in with a vastly different approach. We I ~~were~~ was too open about the fact that ~~*we*~~ I think our mother is a huge pain in the ass and we were desperate to unload her. That was a huge mistake.

The next facility is going to understand that we expect excellence in every respect for our beloved matriarch who might be a pain to some, but not to us, that we only want the VERY BEST for her and that we won't hesitate to remove her if we don't get it.

Yesterday, my mother made one of her startlingly accurate observations: The other residents who have a strong family presence there get treated the best. Because we were not in their faces and not there enough, she was easy to shuffle to the bottom of their list of priorities. However, after I unleashed hell, she got an apology.

It greatly saddens me that this is the way the world works. That you have to be mean in order to be treatedly decently. But I have been trying the nice approach for almost 42 years, and I have not yet changed the world. So, I am going to change me. At some point, you have to do what works.

One more thought

noreply@blogger.com (Jen) — Fri, 01 Apr 2011 01:31:00 +0000

I just figured out one of the things that bothered me about today.

I've mentioned cleaning her sleep machine. I have mentioned helping her with rotating her mattress and asked about the whirlpool.

They were so shocked today when I was angry, and just jumping through hoops to accomodate me-- they went in and apologized to my mother and asked about helping her clean her apnea machine for the first time in a month.

You shouldn't have to get angry to get this kind of treatment. I don't think it's too much to ask for this to be expected and granted.

You shouldn't kick a dog just because he can't tell and his owner hasn't yelled at you yet.

Rash

noreply@blogger.com (Jen) — Thu, 31 Mar 2011 22:56:00 +0000

So, how long did I go before I cracked up? It's been since before Christmas, so not too bad of a run, considering the strain.

Today, I gave notice at the nursing home. After yelling. A lot. Some of you have been privy to my temper, and for those of you who haven't, let me tell you: It's a real treat. The director was out of his office when I started raising hell to the woman I met with on Tuesday night and told her that I was fed up, that nobody helped my mother with things like cleaning her apnea machine, rotating her mattress, they won't fill up their little hot tub for her because it's "inconvenient" and she is repeatedly told, "Ask your family."

Well, if the family has to do everything for her, because they won't even provide TOILET PAPER, then I'd like to know what we are paying $4400 a month for. A space so small that a college student would rightfully object? So they can say no to her fifty times a day when she asks for meds? Thanks, I can do that at home for free. I told them that.

There was a young girl, in her twenties, who came in to talk to me when I was waiting in the director's office, and I said, "I don't really think I need to talk to him. I am giving you my thirty days' notice right now."

Then, I stalked out. And the girl, oh, you silly girl, said, "Um, the thing is? We are going to have to have that from you in writing." She was about two inches away from my face, so I leaned forward just a bit and gave her a look that I have been told is frightening to mere mortals, and hissed between my clenched teeth, "THEN. GO. GET. ME. THE PAPER."

She brought me a blank sheet of paper. I continued ranting while I filled it out. "When Becky first told us about this place, she told us that we could go out of the country for TWO MONTHS, and our mother would be taken care of. Well, I have been up here THREE DAYS this week, and when I'm not here, my aunt and uncle are here. Also, I have seen the way you talk to her-- you give her less consideration than a dog."

See, what they forgot is this little thing called family. My mother is a huge pain in the ass. Huge. But nobody else is allowed to treat her dismissively. She is MY pain in the ass, and I'm the only person who gets to display frustration to her. Well, and my dad and my brother. But some idiots I'm paying $4400 to? Nope.

I've been ignoring calls from the director. So far, somebody has left two messages on my cell. I called my aunt Lori in the car and told her. I told her that I'd rather move my mom back into my dad's house and take care of her than continue this.

"Oh, I don't know, Jen. I think you're taking on a lot."

Yes. I know. But it's got to beat having to drive 40 minutes one way all the time. There is a day care for the elderly down the road, so I am going to enroll her there. My dad even offered to help take care of her. He said, "Well, I didn't particularly want her to go in the first place, but I didn't know how you guys could manage everything."

Not to mention the fact that we are going to run out of money soon. This is untenable. No, we cannot afford $300 more a month. For another shared room. I also said, "We are paying more for that room than Alta is, so if Alta is having a problem sleeping because GOD FORBID, AN OLD LADY HAS TO GET UP TO USE THE BATHROOM DURING THE NIGHT then you can move HER."

Alta goes to bed at 7pm. My mother doesn't. They are the ones who wanted her to share a room. It's like they have never met an old person before. Or maybe they just push people til they break.

My mom called and said that Debbie (the one I met with Tuesday night) had come in and apologized and for the first time asked about cleaning her apnea machine. Aw, that's special. TOO LATE.

The young, silly girl who gave me a blank piece of paper said, "Well, I'm sorry we didn't meet your needs."

"Oh, save it, " I told her. "You don't care. You're just going to fill her room with another old person you can take advantage of. They aren't exactly in short supply."

I told my mother I had said that and she said, "Elderly. It's not nice to say old person."

Caught in the Rye

noreply@blogger.com (Jen) — Thu, 31 Mar 2011 01:56:00 +0000

My mother is the Holden Caulfield of nursing homes. She seems almost determined to get kicked out. Last night's conversation omitted a little detail that was being considered for my mother: A room that had a door she could close, but which she would still be sharing with another resident. For the low, low price of $10 more per day. That is $240 more than we had to pay per month just to move her downstairs.

And how long has it been since they wanted to move her and increase her rates? Not long enough.

Today I told her, "You go ahead and get yourself kicked out of every nursing home we put you in, and I'll make sure that every subsequent one is cheaper and shittier."

So, I called Matt and we talked about it. I am calling tomorrow to tender our 30 days notice. I have already been looking for nursing homes in Provo or Orem. For one thing, even having her just 40 minutes away is a huge pain in the ass. today, I had to go and get her for an appointment with her pain doctor. Tomorrow, I have to go and get her for an eye doctor appointment.

Speaking of eye doctors, my dad and I both got our new eyeglasses today. I didn't even realize how much my eyes were straining and how much my left eye was throbbing until it wasn't anymore. I had gotten this plastic pair just for fun, to be a spare pair, because they were cheap. But after trying on glasses again today, thinking I'd get a "real" pair with clip-on sunglasses, I just ordered a pair of prescription sunglasses with the same frames as the glasses I picked up today and called it good.

Before I forget, I had been away for so long this afternoon by the time my mom's appointment was done and I had taken her over to have her "straightened" at her chiropractic place she used to go to all the time, that I called my dad. I offered to stop by so they could see each other, and invited him to go back up to the nursing home with us. To my surprise, he agreed. But considering that he said this morning, when we were returning home from the eye doctor, "Back to prison," I guess it shouldn't have. When we had dropped my mom off and we were returning to Provo, I said,

"Hey, can you see a lot better now with your new glasses?"

"I am wearing my old glasses. I didn't want your mother to know I got new glasses."

(I wore my new glasses. She did not notice).

Today was exhausting. In addition to getting to fire the physical therapist today (he made it easy for me by calling me first), I was overjoyed to find that I can retract everything I said about her being clearer and nicer with lower meds. She is exactly the same. She always works herself into a state before seeing a doctor (in hopes of getting more pain meds, thinking they will mistake crazy for 'in pain'), so she was in 100% attack mode. It was just as much fun as some of those early days out here before we moved her out.

I was so mad at her by the time we left the nursing home that I said, "You know, she keeps saying that she wishes she could trade places with you, and I just want to say, 'EVERYBODY DOES.'"

"Ohhhh, noooo," my dad said, drawing out the syllables in [vain] hopes of making me see reason.

"Oh, yes I do. I wish she was dying. When she had chest pains last week, I got so excited because I thought, 'Could we really get off so easily?'"

"Oh, Jennifer, no you don't. You just have to learn to ignore her."

"Well, we need to figure out our longterm plans for both you and Mom."

"We don't need to figure out anything for me-- my care is free."

"Dad, I'm talking about Matt and I coming out here to take care of you. You are doing really well right now. And I can have the kids out here with me this summer. But in August? I have to go home. So you and Mom are going to be moved either to Missouri or Carbondale."

"Well, it probably won't be Carbondale."

"I don't know. Maybe we should just move you both now while you are still doing so well."

"But we still have the house to worry about."

"Dad. It's paid off. We just shut off the power and leave it."

We traveled in silence until my dad told me I better change lanes so I could exit, 20 minutes later.

I remember having a conversation in Iowa, almost exactly a year ago, with my dear friend John's parents. I was talking about my parents' refusal to move to Missouri when we asked them to and wondering what to do about it. John's father looked at me and said, "Well. You are still asking."

I didn't know what he meant. What was I going to do? How could I tell my parents what to do?

I made scrambled eggs with milk and cheese and cranberry/orange muffins for dinner. I had suggested that I could make stir-fry or we could go out, in addition to breakfast for dinner, but he wanted the comfort food.

So did I.

Mistakes were made/ Riding the rails (Updated)

noreply@blogger.com (Jen) — Wed, 30 Mar 2011 03:46:00 +0000

I have a headache, so this might be brief.

I think my dad and I were both a little down today. There was no specific cause for it. Just the particular dust particles in our air today or something. Speaking of which, my brother asked if maybe my father and I have both been extremely tired since Saturday because the air quality is bad here sometimes. I haven't seen anything on the news about it, but it's possible. I don't really think it's related to my father's cancer, though, because we have both been napping during the day AND going to bed earlier and sleeping later. So maybe he wasn't down today and I am just projecting.

Anyway.

I fell for it again. My mother called this morning and said that she is having so much pain that she can't do anything. She has no quality of life. She sounded genuinely distressed and near tears. So, I got her into her pain doctor tomorrow, a week ahead of schedule. Then I go up to the nursing home at 5pm for a meeting with the Reminiscence Coordinator.

Wow. Interesting. My mom's physical therapist? It's a home health scam company that preys on nursing home residents and their families. And that explains also how my mother ended up in an ambulance on the way to the hospital last week and why nobody as Sunrise seemed to know what was going on. I feel like an IDIOT.

Also? My mom participates in most of the activities. She is good at Pictionary. Unless these people are lying right to my face, she seems to be doing well. She enjoys people. They seem to like her. And given how often my dad and I call my mom's room and there is no answer, I'm inclined to believe them. I need a NannyCam. But this is why I feel duped-- I can't believe I bumped up her pain doctor appointment. She complains at the same level no matter how many meds she is getting.

We talked about the possibility of placebos. Doctors can't prescribe them, ethically. But nursing homes and daughters can. Ethically? Yeah, if it makes her feel better. I am pretty sure she wants to hoarde them anyway.

We were also talking about the one behavior that seems to be an actual problem: She gets up a lot at night. Also? Her roommate goes to bed much earlier than my mother. So, my mother goes in and out, and always turns on the light (and insists on sleeping in total darkness-- won't have a night light). Her roommate doesn't get very good sleep as a result. This usually leads to nasty exchanges between the two, even though lately when I show up, my mother and Alta are always sitting near each other.

The woman I met with hesitantly wondered about switching the women back-- moving my mother away from the window, so her comings and goings won't bother Alta. I practically bounced up and down in place on the couch. "Yes! That's a great idea!"

She looked startled. It turns out that she had thought that the family insisted on my mother being near the window. I told her, no, that my mother had wanted it, but that they then called us and told us that they had reserved it for my mother. And that my mother was paying more than her roommate, so she got to call dibs. That was very interesting. Communication isn't exactly a strong point; they actually share my frustration that there are too many cooks in the kitchen.
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This evening, my friend Heith asked me about my experiences taking the train. Thanks, for the rest of the post, Heith!

I always get the cheapest seats possible. And nowadays, all of the coach cars have electrical outlets. Some of them are older and only have one or two outlets, so you have to share. But there are also observation cars with huge windows, and tables for cards and games and snacks. There are outlets all over these cars. But the last two times I have ridden the train, I've been in the newer cars where there are two outlets or every two passengers. I've only had to share two seats with another person one time-- in the middle of the night, and it didn't last long.

The seats are big-- roomier than airline seats. They have a footrest and also they are a lot more like recliners than airline seats are. You will have leg room-- and most importantly, you can walk all over the train. As much as you want. The only time they don't like you going from car to car is when they are going through tunnels and might get dust in the train. Going from car to car is really fun-- there is a door at the end of your car with two buttons, one flush with your fist and the other with your foot, that say PUSH. You push them and the door slides open. You repeat this on the door to the next car, and step across the very short span between train cars. You are never actually outside though. I once saw a little boy kicking the lower PUSH buttons and he looked like he was having so much damn fun. I didn't think passengers would like it if I started doing it too, though.

You don't have to arrive until right before you depart. Make sure you call the train station before you leave your house and check to make sure your train is on schedule. It rarely is, which is one of the few downfalls of the train. I don't know about the Kansas City station, though, in terms of parking, but I've never had any trouble (or had to pay for parking). Most of the places I travel to and from have no real train stations to speak of. They might have a little shelter, or a building where you can use the restroom. It's only in big cities that you will find bars and restaurants and possibly be able to buy an actual ticket at a ticket window. I don't know-- when I've been in Denver and Montreal, it was just useful to get a last decent meal before you get onto the train, or magazines and snacks. You show your tickets after you get on the train. You can buy your tickets ahead of time and have them mailed to you, or get a confirmation code to show the conductor. But you don't go through a baggage claim. Nobody asks for your ID. They won't search your stuff. You literally carry it onto the train with you and there are storage areas in the downstairs part of the car for the luggage. There are also several bathrooms at this level.

In the lounge car (the one with all the big windows), in the basement, there is a snack bar that sells outrageously over-priced food AND alcoholic beverages. You can also order wine with dinner. It's mostly useful for providing hot coffee in the morning, breakfast sandwiches (never tried 'em, sorry), and cups of ice. Bring your own snacks. But if you don't bring enough, you can use a credit card for anything you want to buy on the train.

Before mealtimes, a loudspeaker will announce that you need to go to the dining car and make reservations if you want a meal. You should probably eat at least one meal in the dining car for the experience. Then never do it again (you'll see what I mean, though the steaks aren't bad). It's just very very very expensive for mediocre food. (I would like to try the breakfast, but I don't sleep super well on the train, so I never actually make it there). I have started getting Chinese carryout, or Indian food, or a couple of Jimmy Johns sandwiches for the train. I always carry enough for every meal I will be on the train for (plus snacks). I also bring my own alcohol, though I heard on this last train ride that you aren't allowed to do that. EVERYBODY does that. And nobody has ever said boo to me. I usually don't eat all (or even that much) of the food-- snack mixes and jerky are usually good. Sometimes I think I get a little motion sickness and I don't want to eat anything much. But I almost never take enough bottled water. You *will* get dehydrated.

Take Tylenol.

Take a pillow, and if you will be on the train overnight, take something to help you sleep. A little melatonin or Tylenol PM can make all the difference. I also now take a blanket-- having a pillow and a real blanket can make all the difference. And you don't really have a luggage limitation on the train.

No wifi. You're also not going to see a lot of iPads on a train (versus a plane). You'll see a lot of ipods, a few kindles, a lot of laptops. You will want to either download a lot of television or bring DVDs, and either load your Kindle or take a lot of books. I find that I don't usually read or write, but I always prepare for the possibility that I will want to.

A lot of Amish people take the train. And when you board the train in the early morning, be prepared for the cars to smell like a bunch of people have been sleeping in them all night.

Don't let that last bit dissuade you. I love taking the train. I vastly perfer it to flying (and I like to fly-- I just hate the airport). Also, you are allowed to get off at most of the stops and stretch your legs. In Grand Junction, CO, there is a crappy little gift shop that sells milk so I like that. And if you get off the train in Glenwood Springs, CO, they will announce over the loudspeakers ahead of time some recommendations for nice hotels. It is so beautiful there that passengers often become distracted by the beauty of the area and the canyons and forget to get back on the train.
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I forgot to add a P.S.: Even if you find yourself in a coach that doesn't have outlets at every seat, you don't have to stay in your seat. You will put a little tag with your destination station above your seat, and you need to return to it before your stop, but you can feel free to go find a seat anywhere on the train that isn't claimed by one of those little tags. So, just to reiterate, get the cheap ticket.

Heith asked:

That's good advice. But if you can switch seats, why can't you just take your destination tag with you?

The answer is: They load the coaches according to destination and they come by and make sure passengers don't miss their stops, so it's a good idea just to leave that tag alone once its in place. If you are planning a nap, sleep at your own seat or set a good alarm.

The cream in the milk

noreply@blogger.com (Jen) — Mon, 28 Mar 2011 00:01:00 +0000

It's been an interesting week. I have been doing a lot of other writing this week, so I feel like I've been neglecting things around here a little. On the other hand, the other writing I've been doing has been energizing me and making me feel fully alive and present in my life, so I'm going to try to continue it. I feel like, after months of drought, the writing floodgates are opening and I have a window of potentially great productivity right now, so I have to take advantage of it before the next dry spell.

On Tuesday, my dad and I got out for an eye exam and to pick out some glasses. I had been writing a lot that morning, so right before we left, at around 2:20, I was standing in the kitchen eating my lunch-- dipping bread into hummus. My dad looked at me and said, "You eat too much."

"Excuse me?"

"Oh, is that your lunch? I thought you were just eating."

"Yes, it's my lunch. You know every day I'm going downstairs and using the exercise bike and this is the first thing I've eaten today, right?"

He apologized. I was mad for the next two hours, though. We left the house, and I was sitting in the car and my dad was locking up the house. My parents are compuslive about door-locking and closing the shades. My dad and I are having a full on shades war today, as I open them to try to get some sun then find that they are closed again. He's sneaky and quiet, that one. So, my dad comes out and gets into the car, with his portable oxygen tank, and says, "Now, you've got a key to the house, don't you?"

"No."

"I asked you if you had a key to the house!"

"Well, I didn't hear you," I said, while thinking, "I obviously didn't answer you." So, there we were, locked out, with one oxygen tank that lasts about two hours. It could have been really dramatic, but my dad remembered that one of his neighbors has the key.

Norton. Norton lives in the condo across the way, and he comes over nearly every day. Norton is an electrician, and apparently nobody finds him very interesting, including his wife. So, he comes over and bores my dad for awhile while Matt or I sneaks off for a nap. I am fond of Norton. Lately, he's been coming a little less often, but he still checks in more than anybody else does. When I am here, he likes to come over and take out the garbage and recycling cans for me. I am learning a lot about letting frail, retired men do things that I can do better and faster, because dignity is important. That's why I don't rush to help my dad out or into the car, or try to treat him too much like an invalid. He is feeling good and he can do a lot for himself, so I am going to let him have this for as long as possible.

We went to the eye doctor, and I started looking at frames almost the second we went in the door. My dad went, with his portable oxygen tank, to sit down. The kid who was at the reception desk told my dad he had to complete a medical history. I was putting frames on and peering in the mirror. I considered running over to get the clipboard and take it to my dad, but he was half-way across the floor, so I just let him do it. "Have fun with that medical history, Dad," I told him.

When we were checking out, the guy asked my dad if he wanted the frames that would last longer, and my dad simply said, "I'm not too worried about that." But, hell, if anything is going to make you feel a little more alive it is deciding to go ahead and get a pair of glasses. I'm so proud of him.

Later that day, I bitched to Matt about the comment my dad made about my eating. He said that my dad had done similar things to him-- and you have to understand: My mother or my ex-husband would have said somethng like that to me routinely. But my father never has, so I was taken aback-- especially because I sort of feel like he should be really nice to me right now. Matt said that the CNA told him it's called, "Tumor Talk," and it can get quite vicious. So, now we have a new friend besides Dementia to ignore.

My dad gets a little blue sometimes, and then he'll go into his room and lie on the bed, arms bent behind his head, looking at his wall of pictures and thinking. The other day I asked him what was on his mind and he said, "I feel like I'm in prison." Yes, I bet he does. I have felt like that at times, but I can drive, I can leave the house without an oxygen tank. I get to walk away from this (probably). I've been trying to keep my own mood light this week because Matt and I have both noticed that this seems to influence his moods. If I remain chipper and cheery, my dad stays kind of cheery too. If I start to retreat into myself and get depressed, he sleeps more and gets more depressed too.

My brother also told me that he finally started refusing to wash my dad's handkerchiefs. "Really?" I said.

"Yeah, they're disgusting. He was looking for them, so I pointed to the pile on the floor and said, 'Dude, I'm not touching those. You have to wash those yourself."

My dad said, "Well, I can't help it. What do you want me to do?"

"Gee, I don't know. There's this new thing they have called KLEENEX."

Since then, my dad actually moves clothes from washer to dryer. He took out the garbage one day (!). I feel bad when he does chores, because I feel like that is my job, but hell, if he can do it and he takes the initiative, then go for it.
On Wednesday, we stayed home and I wrote all day. It was awesome.

On Thursday, I took my mother to her general physician to see about her sore throat. She has been complaining about it for a month, so I thought we should really get that looked at. I left the house at 1 and didn't get back til almost 6. My dad and I both ate cereal for dinner that night. But, let me tell you, I will be a monkey's uncle. Thursday was the first day I've spent in my mother's company in recent memory when I did not want to throttle her. She is so much clearer and capable of having a real, back-and-forth conversation that doesn't include her obsessing about things over and over and over. She still complains plenty. Her memory doesn't really seem better, but she does ask about current events. I see her at the nursing home-- she knows everyone's name and says hello to everyone. She helps her roommate, helps people find their rooms. She is probably the highest functioning person on her floor.

I have mixed feelings about this newfound lucidity. She is much nicer to be around, but she is obviously in physical pain. It's hard to say how much, but Burke, Lori, and I have also noticed little changes in movement. Matt and I sort of feel like, "She's 71. I don't care if she wants to spend her days doped out of her mind." EXCEPT. Obviously, we DO mind.

She knows she is more lucid too, and in some ways, it makes her more aware of her short-comings: She doesn't think she can drive anymore. She still hates the nursing home and the staff, but when we pop in (we went yesterday to visit her too), she seems to be thriving. Her coloring is good, she is still beautiful, and so I don't worry about her so much as feel bad that she is suffering. Yesterday, I felt so bad for her that I went to CostKo during our visit and re-stocked her soap, toothpaste, floss, handsoap, toilet paper, and got her a magnifying glass for reading, a couple of pairs of pants and tops (of course, they don't work, but...), some licorice, some magazines. Three shades of lipstick.

But she is still The Old Woman Who Cries Wolf. She took a fall on Thursday after we got back from the doctor. She says she was dizzy, and missed an afternoon pain pill when we went to the doctor. She has a bruise on her nose and chin, but a massive, black bruise on her upper arm. She says she has more bruising on her back, but I didn't notice it when she was trying on her new clothes. This morning, she called and wanted to have an X-Ray because she thinks she broke her back. Her shoulder, that bone in the back there. I assured her that it wasn't broken. "How do you know?"

"Mom, you fell from standing. You didn't fall from a building."

Hmm, I guess old bones get brittle though, because hips break and then people fall. But she is savvy enough to know that: a) she got hurt, b) something COULD be broken, c) most of us err on the side of caution when it comes to health, d) last time she went to the ER, she got a fentanyl drip and felt great for awhile (she says that in retrospect). So, I interpreted her request this morning, after seeing her move yesterday and try on tops and clothes, as an attempt to get pain meds in the ER. So, I told her she has to give it some time and then if it's still really bad, we'll take her to the doctor.

"Well, if it were broken, would you really want me to have to be like this for a few days?"

"It's not broken."

If it *is* broken, I will feel bad, but honestly, when she went to the ER with chest pains and it turned out to be anxiety that cost $1000 for an ambulance ride less than a mile down the road, I felt like I had been completely duped. It would be nice if she could save these requests for times when doctor offices are actually open.

There are a lot of moments when my dad and I are both here, me in the recliner on my laptop, him at the dining room table with his Mac, and he turns on some music and we write. I love those moments. My dad has been working on his memoirs all week, and sometimes when he is in the middle of it, taking a break, he will tell me stories. He told me a really funny story about my mother that involved a doctor's visit in Dayton, but I have to wait a bit before I can tell that story.

He also told me that when they were first married, in Dayton, that they didn't know anything about sex. They decided to go to a doctor about it (I don't know what the problems were specifically. Thank God). The doctor ended up being a Catholic and just taught them about the rhythm method. "That's how it was in those days," he told me. "Nobody knew anything about sex."

A neighbor came to visit, and he told me that the guy used to live in their neighborhood. His first wife passed away. His second wife died of one of the most horrible things I have ever heard of: She had a rare condition that led to a Prion disease that caused incurable insomnia. He said she didn't know what has going on at the end. I am still horrified. His neighbor remarried again and they have moved to a different part of Provo. I have to say, I'd really wonder about marrying a man with that kind of track record. I know it's not his fault, but still...

Last night, my dad showed me the movie Seven Beauties. My father has always held himself responsible for my foreign film education. I always dread it when he rubs his hands together and tells me he has a movie to show me. On Friday night, he did that and I told him he had to wait until Saturday night so I could watch Fringe. As usual, the movie was excellent. It was about the holocaust, and Italian film. I think the lead actor carried the movie with his eyes. Haunting. At the end of the movie, my dad told me it was a true story. Then, he started talking about some things that happened in the family before he even met any of them. He isn't including them in his memoirs because it's not his family. But he is making sure I know. And it's MY family. And I am a writer. I think he knows this and he is telling me because he doesn't feel like he can tell these stories, but I will tell them. On the other hand, I am given to whimsy.

These are not happy stories. Memories are being stirred up by his work on his memoirs, and also, as cancer patients approach death, they do tend to reminisce more "they" say. These stories are the dark underbelly of a family stories, the Faulkner-esque family tragedies that I had heard whispers and rumors about over the years and tried to piece together witha lot of guesswork. These are stories that he now tells so easily that I marvel that he has gone 42 years without saying a word to me about them. The United States government cannot cover its secrets. But family has suppressed their stories, for more than 50 years, and now, they are rising to the surface, waiting to be skimmed.

Writing is a Double-Edged Sword

noreply@blogger.com (Jen) — Thu, 24 Mar 2011 02:34:00 +0000

Not really. But I wrote five posts for the TV blog I write for and have been neglecting for months now. It takes a lot of time to write the posts, search the web for pics and links to put into the post, to tag it, and set it all up.

So, basically, I'm tired, but I've made notes to do a longer post tomorrow.

Buying glasses and cleaning pools

noreply@blogger.com (Jen) — Tue, 22 Mar 2011 15:00:00 +0000

Last night, my dad was still up when I got home from the train station. We sat and chatted for a little while before he went to bed. So far, I've heard most of the things Matt has heard. For some reason, my dad seems to think (currently) that his time is nigh. He asked Matt, "Do you think Jen will be okay if I die on her?" Matt and I were standing behind the car at the train station. As we put my stuff into the trunk, I lit a cigarette and we stood there while I smoked it, and I laughed and said, "What does he think I'm going to do? Run around the house screaming like a chicken with its head cut off?"

"Dude, I don't know," my brother shook his head. "Dad keeps saying that he doesn't give a shit about the world, but it's his family he's going to miss." Well, my dad seems to be a little sick of my mother's "bullshit," so that leaves me and Matt. So, as we suspected, our being here seems to make him want to die even less. He keeps telling us how impressive people think it is that we are doing this. I am glad he thinks it is impressive, because we think it is impressive too, haha. No, seriously. We do. Heroic even. Nothing like blowing your own horn if you're a blowhard.

I woke up a few times in the middle of the night and I wasn't sure where I was each time-- I was confused because Dereck wasn't there and I couldn't see his digital clock from my side of the bed. Then I would wonder if I were on the train. Then I'd figure it out. But having a better attitude about being here sure makes a huge difference. So does having had two weeks at home.

I woke up with a splitting headache that three advil and two Excedrin have not yet been able to touch. However, I've been writing up a storm today, both here, and on my new writing group blog. Changes of scenery, man, good for the writer. My mother started calling promptly at 8:30 a.m. Fortunately, we were all up. She started in on my dad to make her doctor's appointments with new doctors. But she had the names of some, not all of them, and she wanted him to call their friend Maud again and ask her for the list. My dad told her she should do it, he's dying, he's not going to make her appointments anymore. The phone then got handed to me. I told her I'd call Maud for the names and then call her back. She ended the call with, "I have a very sore throat. And the dentist didn't get all the food out of my teeth! And he thought he did. And I have blisters all over my mouth. And my lips are chapped. And everything is just falling apart. And there is pus coming from my eyes." And that is how I knew that she was fine. Everything is wrong. And so it goes.

While I was still on the brief call with Maud on my cell phone, my mother called back. I told her I had the names. Then, I'm barely sitting with my first cup of coffee and chatting with my brother and dad when she calls back. I explain that I haven't had a chance to make appointments for her yet, and that she might have to wait to see a new doctor, and it also depends on whether they are taking new patients.

There was a pause. Then, as imperious as Queen Elizabeth II, she said in a very clipped and tight voice, "So, you're saying I might have to wait to see a doctor. Is that right?" If she had been a godfather in a mafia movie, I would have been scared that she'd put out a hit on me. As it happens though, she is my mother and doesn't have access to enough money to hire a hit man, so I just said, "Yes, that's right."

"Well, how long?"

"I don't know yet."

Then she asked to talk to my dad so she could tell him she loves him and inquire about him (as she had not in the previous calls in which he had answered the phone). Little did she know that he was going to tell her to stop calling and asking him to make doctor's appointments for her. So, then, of course, five minutes later she called back and wanted to speak to him again. I decided not to hand him the phone again and told her that he knows she loves him. "Is he ever going to forgive me?"

"Of course he is," I told her. "There is nothing to forgive."

My dad may not quite see it that way, though. We chatted about how my mother's jealousy issues are her one great flaw (I saw no reason to contradict him; if that is how he sees things, who am I to disagree?). He told me that her mother told him that before they got married. "After we were married, I'd come home from work and she would be crying because she wasn't getting a PhD."

I wanted to ask, but did not, "At what point did you sort of realize, 'Oh shit, what have I gotten myself into?'" He is writing his memoirs today. He is up to where he met my mom and they got married. I keep wondering how this is going to turn out, written through the glasses colored, "My wife fucked up my health with her useless health complaints, so now I'm dying" lens.

Speaking of lenses, I mentioned to my dad last night that he should get new glasses (he was saying that my mother won't turn on her TV because she claims she can't see it. It's a small room she is in and a rather large TV, but okay, sure). He said, "Well, I need new glasses, and I thought about it, but it didn't seem worthwhile for only a few months."

I said, "Why the hell not? It's pretty important to your quality of life to be able to see. And *I* have to get new glasses."

He thought about it for about ten seconds before realizing that a new pair of glasses, tri-focals, would cost him only about $35 with his insurance, so he's going to do it. He called and made an eye appointment for tomorrow afternoon. I called this morning and arranged for more oxygen tanks to be delivered.

My dad also bought a new book at Borders yesterday and started reading it. I had sort of wondered why he had given up reading books for awhile, so it was nice to see him reading again. It's a book by Patti Smith about her relationship with Robert Mapplethorpe.

This morning, my dad and I were talking about death. I asked him if he had a bucket list. He said no, just that he would miss his family. I said, "I think about death a lot, probably a lot for someone my age." His response surprised me:

"Everybody does. I've thought about death my entire life too."

Oh Christ. You mean you can still have a really hard time facing your death even when you've pondered it your entire life? I am so fucked.

He mentioned that he had met with the Hospice chaplain, who turned out to be Mormon. He told the guy he had no use for Mormon Doctrine. The guy said, "Well, there are some good things," and my dad said, "Yeah, but I don't think that's the point of life."

I leaned forward on the couch. "Uh... what do you think the point of life is?"

"The hell if I know."

Oh well.

My friend Stephen sent me a letter and told me,

"Jen, at the end of your last letter you asked, (maybe rhetorically?) "Is the meaning of life to be happy? And if not, what is the point?" To which I've given a lot of thought too. My own take is that it's not to be happy-- (but hopefully recognize those moments when you DO find happiness)-- I think it's about love. Complete unconditional love is all we've got going for us. Everything else is either a result of love or a distraction from it. It's love for yoru parents that maybe brings you such grief, and it's love that brings about all those other unpleasant and lovely feelings that sort of sum up what life is. It seems to me that love is about the only thing a person can really control."

I thought that was really lovely and hopeful. That probably aligns with what my dad has been feeling. I also got a letter from my friend Alex (Missy, I owe you a letter), and his take was slightly different:

"At least there are smokes. A school group came in today and I overheard one of the teachers say to a seven-year-old: "Put into the world what you want it to be." The kid was spitting. At least my vice kills me. Also, the senator was out, so she sent him into the senator's office for a time out. If that doesn't instruct that kid that breaking the rules is worth it, I'll give up my smokes now."

That cracked me up.

On a final note, this morning I watched the first episode of Raising Hope. I laughed until I cried. Then, I went to find something to post for you guys, and I found the trailer, and I still have tears in my eyes. But the salient point is that in the first five minutes of the show, the main character, Jimmy, age 23, who still lives with his parents, quits his job. He passes his mother leaving for work in her pink maid uniform, with a cigarette hanging out of her mouth, as he stalks into the house. She says, "What are you doing home?"

Jimmy: "There's got to be more to life than cleaning the same pool over and over."

"There isn't."

And after a long hiatus, we're back!

noreply@blogger.com (Jen) — Mon, 21 Mar 2011 15:47:00 +0000

I'm sitting on a train with the beatiful Colorado River and reddish Rocky cliffs out my window. It's amazing how this train trip, I haven't felt like I had to escape into television or a game or a book the whole time. I have been happy just to think. I read a great article last week about the power and necessity of loneliness. I need a lot of alone time. My friend Chris was telling me that he likes to talk to people on the train, but I don't. I am perfectly happy not even going to the observation car. I like my little bubble with my pillow and blanket and all my STUFF.

To catch you up after my blogging hiatus for, what, a month now? I am on the train back to Utah. We should get getting to Grand Junction soon, and I'll get off the train and stretch. Sometimes when I ride, I don't get off the train more than once the entire journey. This time I've gotten off a lot. I also have not put on my glasses today, but I read the entirety of Winter's Bone. Not sure what's up with the glasses thing. I think I'm just enjoying seeing the world as kind of blurry. I got my eyes checked last week because I've been getting minor, frequent headaches, and generally feeling that my eyes are worse. Eye, actually. My left eye is weaker than my right, and needs an upgrade from just a year ago. Welcome to my forties.

I will get glasses in Utah. I didn't have time both to pick them out and for them to arrive in Kirksville before I left. I just spent two weeks at home with my family. I feel rested and restored. I feel almost normal. I can hear in my brother's voice and the tenor of his text messages that he is as bone weary and mind-numbingly bored with his latest care-giving sting as I was by the time I left. That is largely why I stopped blogging. Stasis. No movement. Nothing was happening. It was hard enough to live it, let alone revisit it by writing about it daily. Trust me, I'd rather lose readers because I am silent than because I am as boring as sand. The only time I felt alive or engaged with anything was when my dad went to bed. Then I'd head down to the basement and watch Dexter on my laptop while doing the exercise bike. I watched all 5 seasons. Then, on the train back to Kirksville, I plowed through seasons 2 and 3 of Breaking Bad. It wasn't that I was having too much alone time in Utah-- the opposite. My dad and I were always in the house within ten feet of each other, sort of circling each other. Waiting. So, I never felt like I could really get involved in a project that I was interested in. I felt like my life was suspended, and I hated it. Matt and I talked a lot about the Long Haul. How long we can Keep Doing This. We looked into respite care: We could have my dad transferred to Salt Lake City to a hospice facility for 5 days a time and only every thirty days. We considered it. But it's such a huge pain in the ass for him to be transported twice for such a short period, and he will surely be unhappy and disoriented. I am already doing that to ONE parent. I'm not going to do it to both. Then we went down a list of people we could ask to stay with him for a week so we could both be gone at the same time. We are still sort of exploring that option for Easter. Huh. Dereck's and my birthdays are coming up. Then Mother's Day (this should be a banner guilt year) and then Father's Day, which could be horrible, and probably will be anyway because it will be The Last One. Then Matt's birthday, then my parents' 50th Wedding Anniversary in July. There is always something to hang on for. Another occasion, another marker of life on earth. Markers my dad will eventually miss, and sometimes that pang I feel at missing family events makes me more understanding of what my dad is going through, what it is grieving him to miss.

My brother has been getting my dad out of the house more, though. They have gone twice to the nursing home. Borders. CostCo, perhaps. Not sure exactly.

One thing I did during my last trip to Utah was buy some mega-Biotin hair, nails, and skin vitamins to see if it would help my hair grow faster, and shockingly, it DID! I didn't really see any movement in my hair before then, but now I can tuck it behind my ears. Probably nobody can really see the differences except me and my hair stylist. I got my hair highlighted the day after I got back to Kirksville. The brown was depressing me. I felt like I looked in the mirror and didn't recognize myself. That is also a secondary reason I haven't been blogging. Not my hair color-- but this sense of not recognizing myself. I can *feel* myself changing incrementally, almost as slowly as my hair is growing. And I don't like it. I am growing and changing into a person who mostly lives with her dying father away from her family. It took me a few days in Kirksville to feel like I belonged there-- the first night I cried in confusion because I missed my dad and my boring stupid routine in Provo. Fortunately, I was back long enough to take care of the kids, hang out with my husband, have family dinners in which I am not just a face on a hand-held device being passed around the table, visit with Dereck's parents, take care of regular errands, make batches of muffins, exercise, see friends, go to Kum & Go for a soda, so I knew again who I was and where I belonged. We went down to the Pear Tree with Dereck's parents to celebrate ten years of being together, and Dereck's dad and I got the filet and batter-fried lobster.

Another day, Dereck and Panda and I went down to Jeff City and took a tour of the capitol. I was delighted to find that it's a beautiful building. I also like the terrain and layout of Jeff City. I've never been there before, but as we looked over the small city from the top of the capitol's dome (Alex is an intern there, and he has access to keys), I thought it was nice to know that there are nice parts of Missouri. Then, we went to Columbia (not in time to get Indian food for dinner, so Dereck and I got Jimmy John's sandwiches, while Panda and Alex went to a bar. Ah, youth). Then, we went to see Avenue Q. I saw it last year with my dear friend John, and there were four cast members from that show still touring, so I was pretty happy about that. Dereck LOVED the show too. It was a long day and it felt like about three trips, and it was so much fun. I got to be home and fully dipped in my life for two weeks, and I needed it so badly. I needed to now that with all of the changes, I still fit. My family still fits together. It's okay that I also belong in Provo right now. I have lived through two separations from my family now, and I can do it again. I can do this. I didn't shed a single tear this time before or during my trip back to Utah. I told my dad I am going to start a writing regimen every morning (something he has been trying to do also), so I know he can get behind that.

My father's physical changes are also incremental. He noticed more fluid in his abdomen Friday night and it kept him up with worry. It is harder than last time. Matt said my dad felt better about it later in the day, though, so they didn't call anyone from Hospice. I don't know whether it's better or the same today because Matt hasn't mentioned it today. I know that if he is starting to have more fluid in his abdomen, that is bad. That is probably occurring because of liver failure. Though, as I have learned, organ failure can last a long time. We always hear about the fagility of life, but I think I am witnessing life's prying grasp. I know that my dad is also depressed. He moves between anger, denial, depression, and general joviality. I think most people know the jovial side of him.

One new thing he's been doing-- and I blame this on the cancer in his brain because otherwise I get mad at a dying man-- is blaming my mother for the fact that he is now dying. If he hadn't been so distracted with her health complaints, then maybe he would have had his finger [the melanoma presented as what looked like a scab on his right ring finger] looked at sooner. In fact, he did. The doctors just didn't recognize it at that point. I think the blame lies with the cancer. Well, no, hell, let's take it a step farther: Let's blame it on the fact that humans are mortal. He got melanoma. If he really wants to blame being distracted with something else, I suggest he look at his triple bypass. The man has led a clean life. He didn't smoke, he didn't drink much, he exercised faithfully on his exercise bikes. True, his weight would go up and down, but so do lots of people's. And lots of people get heart disease. My dad has known people with heart disease, but he might be the first person he's known who is dying of melanoma. Perhaps why that is so hard for him to wrap his mind around this. I don't expect to die of AIDS because I don't live a lifestyle that would put me at risk for it, so I can imagine how he's feeling if I imagine how stunned I'd be at an AIDS diagnosis. I am trying to find ways to feel my way into his struggles. I'm not a martyr or a masochist-- I truly want to understand. Maybe I just think about death a lot more than other people. But I can't remember a time I wasn't pretty aware of my own mortality. I sure waste a lot of time for someone who thinks about death a lot. But the point is that I think about it enough that I don't know that I'll be this stunned by it. But everyone handles death differently. It's not my death, it hasn't been my life. He loves his life, and he wants to live. My friend Alex and I joke that we don't really mind the idea of dying because even though we're happy (and medicated!), and we love our families and friends too, life isn't THAT great. Maybe that makes me sound like a terrible mother, but we all know I'm a great mother, so I'm not too fussed about it.

Speaking of great mothering, I got up with my kids this week and made muffins in the morning, fried eggs, toasted bread, made coffee, and took them to school. My usual MO is get up, help Christian with insulin, get his breakfast sorted, and go back to bed. The kids were a little stunned by my behavior this week. Christian said, "Are you going to be more mothering to us from now on when you come back?" and I said, "No, probably not, but right now, I can appreciate that staying up with you in the morning isn't too great a hardship." I don't want to sound like The Breakfast Club, but when this is over, even though I think I will be changed in some small, philosophical ways, I doubt I'm going to change my stripes too much. But oddly enough, these small changes scare me. I worry that by the end of this, I am going to be beaten down with exhaustion, that I am going to be sadder, more depressed, that things are going to haunt me, that I am going to feel guilty and regretful and helpless. It all sounds bad. My largest experience with death so far has been with my friend Karl, and I can still feel its repurcussions almost as freshly as when he died two and a half years ago. There is still a Karl-sized hole. And soon there will be a Dad-sized hole. And it scares me. Karl's death was so entwined for me with this huge grant I had been working on all that year, and then finished two months after his death. Then, I sort of collapsed for six months. The only thing I really remember about those six months is watching House. I guess I retreat into television when my brain can't handle things. In Winter's Bone, the mother has "gone crazy." Her depression, what had happened to her in her life, broke her. She couldn't function anymore, so her 16-year old daughter was taking care of everything-- and had been for years. Everything being the feeding and care of her two younger brothers. Her father was AWOL. I am a pretty strong person, but Karl's death and that grant made me feel broken for a long time. And I don't think I'm back to 100%. Maybe I won't be. And the consequence is that my children have a mother who doesn't stay up with them all the time before school, who has a hard time working because I'm afraid my brain can't take the intensity again, and a mother who smokes cigarettes that will kill her and pretty much doesn't give a shit. No matter how fiercely I love them, life has broken me down a little. It's been hard to bounce back and recover. I fear more set backs. Will I retreat more into my own head and into television? What will these changes manifest themselves as? Will I be strong enough not to let these things happen? To care if they do happen? I tell you, I find that the older I get the more compassion I have for everyone. You have no idea when you are standing and smoking on a train platform what any of these people's stories are. Just like me, they got dressed this morning and they are standing out there in the world. What are their stories? What have they suffered? How are they bandaging themselves together? I can blame the Winter's Bone mother for basically abandoning her children in their presence-- but I can't really condemn her for it. I can be scared to death by it though. What is the thing that finally breaks you? How do you prepare against it? To some extent, I have wondered at one point my mother sort of let the pieces of herself scatter. I don't think she did it consciously-- but I think there were cracks in her foundation from her youth and experiences, and I sure as hell wish I knew who to beat up for them. Or whose grave to piss on. That sounds angrier than I am. I used to have enough anger to fuel me around the world on my own two feet without stopping. The anger is giving away as I get older to exhaustion and despair. I'd rather have the anger.

And maybe that's just how it is with my father. He can't be expected just to change his stripes and accept his fate and accept his death. It hasn't really been a lot of time for him to process it. I can hope that he will process it and come to some kind of acceptance by the time his body is ready to go, but I don't know that it will happen. Some people probably die angry. But I think I fear dying angry and depressed more than I fear dying or death. I do, however, fear wasting time. I've been thinking a lot about writing lately. More to the point, the writing that I still need to do. I want to write books. I was sort of musing to some writer friends this week that I think I don't write fiction because I don't have any characters. I don't have characters clamoring in my head to be written about. However, I think that everybody has stories to tell. I just need to find mine. A few days afterward, I sort of saw a short scene in my mind involving a man in his sixties named Ruby. I've been thinking about Ruby since then and jotting down notes as I discover things about him. I'm re-discovering the pleasure of creating a character. It's like having paper dolls and trying clothes on them and seeing what fits. What does he do for a living? How did he come to arrive at this particular scene? Who are these other people he is with? How did they get here? And, what I won't find out until I write about this is whether it's actually Ruby's story or someone else's story, and Ruby just caught my attention first. I think I was wrong about whether or not I have characters jangling around. I think I have just learned to tune them out the way I can tune out noise, music, conversation, and my three noisy children. I need to find quiet time and listen.

Ahhh Pat. And, Jen, how is your mother? Well, we moved her down to the alzheimer's unit. It's been three weeks now. She hates it, as we expected. When I call her every day and say, "Hi, Mommy, how are you?" She says, without fail, "Not very well." She is complaining about the severity of her pain. It's quite compelling, but I am trusting right now the pain doctor and the psychologist who both think that her pain is secondary pain. This means that her synapses are still firing pain messages, although there is no physical cause. This could or could not be true. It's really hard to know with the dementia. Last week, I got a call from her physical therapist's nurse. She said my mother's blood pressure was high (170/something). I told her to call my mother's pain doctor, because it would sound better coming from another health professional. Then, she called me back to say my mother was complaining of chest pains, so she was going to the emergency room. I will admit, in the name of trying to capture this experience honestly, that when I found out she had both high blood pressure AND chest pains, a small part of me thought, "Could we really get out of this that easily?" That part of me was hopeful and a little excited that maybe SOMEBODY'S suffering would end. I'm not proud of it, but I am not ashamed of it either. I believe it's called "Being human." I felt the same way when Matt told me that fluid was gathering again in my dad's abdomen.

The night she went into the ER, I called Matt and my dad. My dad remarked that sometimes her blood pressure spikes when she is constipated. They released her at 10:30 p.m., after administering a fentanyl IV drip for her pain, and explained it all as a panic attack she had worked herself into. And once again I felt completely duped. New doctors= Everything Pat Says Is True. The next day, I called her about it. I said, "Did the pain medication they gave you in the hospital help at all?"

"No, not really."

"Well, I don't know what your doctor is going to think about giving you more medication if having more in the hospital didn't make any difference." I wonder if her strategy is that if she says it didn't help the pain at all, they will give her even MORE of it. And that's not how it works. And I don't know whether this pleading for pain meds is part mental illness/dementia or real or both. She complains about the staff at the nursing home. Of course, they all seem great when we see and talk to them-- but they also know that these people have dementia and if anybody knows that dementia patients lie about how they are being treated, *I* know that. But then there is the part of me who knows how impatient I can get with my mother, and I wonder whether people take advantage of their dementia to actually treat them badly. Of course, my mother, like my son Tommy, probably wouldn't know from bad treatment. Tommy thinks he is being yelled at if he is being *parented*, i.e., asked to do something the final time in a louder, sterner voice. Then he wonders why we didn't keep using the completely ineffective polite tone that allowed him to continue ignoring us in peace. Maybe I'd have to go and visit every single day for long periods to really be able to watch the staff. I can't do that right now. But it's another reason to take Pat back to Missouri when this is done. One thing that Matt, Burke, and my dad mentioned to me earlier in the week, but I did not witness myself until Thursday, is that she is clearer. She still has dementia, but she can conduct a conversation now about something besides her pain. She asks about the boys. She asked me to tell her about the tsunami in Japan. That jolted me a bit-- it's been awhile since actual conversation was something like possible. I have mixed feelings a bit-- It is far less confusing emotionally to dismiss this person as not my mother, as just this dementia-riddled person who looks like her. But what if she is in there somewhere? How do I deal with her unhappiness then?

Last week, my uncle Burke and I talked about the possibility of moving her to another nursing home in Utah, farther from his house, but closer to Dad (sort of in the middle). She could have a solo room, but they don't even have a dementia unit. He said he could move her. Matt and I talked about it and then kept thinking about it throughout the day: It took us so long to fill out paperwork, get everything signed, get her doctor information moved, get her prescriptions moved-- it's not just a physical move. It's an entire process of having to get to know a new staff, a new facility, and a fresh start is not going to change my mother's overall happiness. I do think that being in her own room would probably make her happier. We can work on that. But given that her stay in Utah is temporary, we have decided to keep her where she is. I can appreciate her brothers and sisters' concern for her, but sometimes throwing suggestions into the mix when we have already made decisions just serves to confuse me and wrap me up in knots for a day. Right now, I just want to stay the course we are on. I'll be back in Utah til April 15. Then, I'll go home for a month. Then, in another two weeks, the kids will be out of school. Dereck is going to the middle east for six weeks, and the kids will join me in Utah for June. Then, in July, the boys' dad may take Tommy to China, Christian will be in Dereck's class at the Joseph Baldwin Academy, so Sam and I can tool around together. We had had plans for a summer camp for Sam too, but we got distracted somehow...

It's wild that I still have both my parents. Even though they are in different places (Pat) and positions (Tom) now, they are both still here. And I am trying to embrace that and to enjoy this time. I don't want to look back on this and think I just wished it all away. However, it's incredibly difficult to appreciate what we have while we have it, now, isn't it? Like telling young mothers they need to enjoy the time their kids are babies and toddlers because it goes by so fast. I did enjoy it, but it was also a blur, and I am enjoying parenting MUCH more now. And there was no way I could relish or really appreciate it when I was in the thick of it. I was trying to survive it. But I'd like to do more than just survive this. I need to find meaning and purpose and continue my life as I stay out in Utah, even though, frankly, right now watching TV and reading books is about my speed. I am feeling much more like a consumer than a producer. But I have great, yawning, stretches of time in which I could be writing. So, I have to seize it, I have to make it count. Since I have once again chosen to wake up and be alive, I might as well not waste it.

Rollercoaster

noreply@blogger.com (Jen) — Thu, 17 Feb 2011 17:33:00 +0000

I think I'm getting used to the roller coaster. One minute, things are fine and placid, and the next I feel anxious and sick.

I try not to fret about the days I haven't updated this. I figure that my decisions not to update on a given day reflect this experience as well as the days that I do write. I made a semi-conscious decision not to update while I was home last week. I was safe and cushioned and that doesn't really make for interesting writing, or reading. When I first returned to Kirksville, I told Dereck, "I wish it felt like I'd never left, but it definitely feels like I left."

I was not prepared for how exhausted I was. A couple of nights, I went to bed around 7pm and slept til 11am the next day. But mostly, I hung out with Dereck and the kids in the evening, and during the day, I just rested and saw some friends. I haven't crocheted anything since right before Christmas. I went from doing it obsessively to not at all, and I don't really know why. I think in part it has to do with conserving energy. Or maybe I just made everything I needed to make for awhile.

I was surprised by how many times I still ended up talking on the phone about things from Utah. I couldn't quite leave it behind me. In fact, it has become clear to Matt and I that having our mother stay in a nursing home in Utah longterm is not practical. Right now, the nursing home talks to four people about our mother on a regular basis: Burke, Lori, Matt, and me. The four of us all have pieces of information. Various staff at the nursing home have other information. Each of my mother's many doctors have other information. There needs to be more effective communication and coordination. The Hospice staff have meetings with the staff to talk about all of the patients. We need to start having staff meetings too. We do try to update each other on the phone, with multiple calls per day, but it's too confusing.

Short term, there are problems. The director called Matt last week and told him: It's not just the drain on our staff resources. Your mother corners the other residents and complains. They have taken to retreating down the hall when they see her coming. There have been people complaining directly to him about her. He laid it out: Either we move her downstairs to the Reminiscence Unit (RU) (I can't decide whether that is the worlds' cruelest name for a dementia unit or whether there could be a worse one) or they will kick her out.

Well then. Two bad options. However, we went on Monday, armed with a dozen roses, red licorice, and popsicles, visited Pat, and then went down to tour the RU. Pat was freaked. She kept insisting, "I'm not moving down there. You will have to find another place for me. I've been down there when I was investigating this place, and all of those people are retarded. I don't want to associate with those people."

The director had made arrangements to have a lovely woman whose name is Alta, I believe, room with my mother in the RU. So, my mother will go from a small studio to a smaller, shared space. With a better view. The RU is perfectly nice. The staff is lovely. They have a cat-- a plus for me, but not for my mother, who pleads allergies, when actually I think she just doesn't like animals. Come to think of it, that was probably an important clue I overlooked in my upbringing. This morning, I found some old pictures in a tupperware container. I suddenly remembered that when I was in high school, I had a cat that my mother didn't like. One day, I came home from school and the cat was gone. My mother had taken it to the shelter. Could that explain the large number of animals who currently live with us?

Yesterday, Lori brought Pat by to visit Tom after a doctor's appointment. We are now working with the doctor to reduce my mother's narcotics steadily so we can see what is under all that fog. Of course, she will still have dementia, but perhaps things will be better. I was amazed when I saw her yesterday. She was pleasant, polite, well-mannered. She did come in and start off with her list of things she needed-- vacuum, stockings, scissors, ice packs, dish towels-- but Lori gently redirected her to my dad. We sat in the living room and my mom asked about his pain (he doesn't have any, thank God) and about how he liked the new coach of the Utah Jazz. That stunned us a little, because how on earth does she know about that? She said primly, "Well, you can't live in Provo or Sandy and not hear about that." Well done!

The visit wasn't long, but I think my parents both enjoyed getting to see each other. This morning, my father was sleeping in (he didn't get to sleep til 4am last night. That was me the other night. We take turns) and he got startled and cried out, "What? What?" I told him he'd been dreaming. When he got up for cereal later, I asked him what he'd been dreaming of.

"I thought I heard your mother's voice."

I mentioned to Lori my mother's remarkable behavior, and she said there was a very specific reason for it: My mother is so terrified of the RU that Lori bargained with her and said that if she changed her behavior, she might not have to move. Now, that puts us in a bit of a pickle, because according to Sunrise, she *is* moving. I told Lori, "I don't know how permanent this change is, either. And it's a little infuriating to know that she actually *can* control her behaviors." It's *more* than a little infuriating, actually, so I breathe in and out and tell myself that she is less stressed out now, her medications are being regulated, so maybe that gives her improved self-control.

Lori wants me to call the director and plead with him to give Pat another chance. But I am reluctant to do it, because I think they are pretty set. And also, because even though I know Pat will have a set back with the move, I kind of think she needs the extra care of the RU. I told Lori last night, "This is not a longterm solution. Longterm, Matt and I have discussed it, and I am taking her back to Missouri with me when I am ready to go back."

That probably sounds crazy. But truthfully, I've always thought that my dad would probably pass away first and that we would then move my mother to Missouri. I've been talking about it matter of factly for YEARS. If I am to be her point of contact, I need to be in the same city. Or at the very least, the same state. Also? This isn't Lori and Burke's responsibility. They are happy to help, they are lovely and generous and gracious. But she is my mother. And Matt's. Matt has offered to take her to Colorado, but I pushed to take her back with me. And that feels like the right decision to me. So, we could possibly tell her that the RU is temporary until she moves to Missouri, OR tell her that if she continues her improved behavior while living there temporarily, she can move back upstairs.

We spoke to a woman named Lyle in the RU. She says she is the oldest staff person at Sunrise, and working in the dementia unit has been eye opening for her. She sparkles, and she clearly loves her job. But she told us, "I have both Altzheimer's and high cholesterol in my family history. I think I'm just going to eat more steak."

I laughed about that for the next two days.

We did see one older woman in the RU randomly opening and closing the doors of people's apartments. From what I hear, it's not the staff you have to worry about with theft. It's the other residents. My mother lost her original engagement ring last week. I was crushed, because I *knew* she had it up there with her. I had found it in a bathroom drawer while looking for manicuring scissors. I mentioned at the time that I was nervous about it being there, but she insists that she is careful. I am sure she *tries* to be. However, she is not always successful at remembering to lock her door. Or remembering where she has put things. I should talk-- I left my purse at the grocery store yesterday and didn't realize it until two hours later. Of course, this is Utah, so it was fine, but things like that make me wonder whether my own dementia is coming on.

She found the ring later, but I told Matt, "I'm going to replace it with cubic zirconia. I wonder if I can get the other one off her finger and replace that too." However, the one on her finger may be OK.

Yesterday when she came in looking for ice packs, I bit my tongue because in the RU, residents don't have refrigerators in their rooms. One of my mom's friends had asked about us getting a microwave for her upstairs room, but we ignored the request. It's certainly out of the question in the RU.
___________________________________________________________________________________

I'm not going to lie and say it was easy for me to return to Utah from Missouri. Last Friday afternoon, I had a panic attack. I cried for about an hour. Dereck held me while I sobbed, "I don't want to go back. I don't want to do this. I don't want to go back. I don't want to go back."

The next morning, I wept when I said goodbye to my boys. I pulled myself together to leave them, but then I cried on the commuter plane to St. Louis.

Sunday was a hard day. In the morning, the CNA came to help my dad with his shower. When my dad was showering, he really noticed for the first time how skinny he is getting. It startled him a lot. He spent a long time just lying in bed that day, thinking. At one point, he got up and said he wanted to talk to us. He has changed his mind about not wanting a funeral. We spoke of who would speak, music, where it would be. Then he said, "I knew that my life with your mother was over. But I'm really going to miss you guys. And I'm really going to miss watching your kids grow up."

When he went back to bed, I ran to the basement. I cried so hard I was dry heaving. I went and sat with him and told him some of the things he has taught me and done for me that I appreciate the most, and held his hand, and we sat for awhile. We are definitely getting to have the intimate moments I was hoping for-- but they are combined with terrible pathos. On Sunday, I realized that no matter how hard I try to practice acceptance about this, I can't pretend, with any part of myself, that I am OK with my dad dying. I'm not.

Sunday night, none of us slept. We compared notes in the morning. While I was up til 4:00 a.m., I did make peace with being here, though. I realized that I will always look back on this time of my life, with just Matt, my dad, and I here, and count it as one of the most precious times of my life. So, I have let go of my anxiety about being away from home and away from my life. This *is* my life. And in the grand scheme of my life, this is just a sliver of time. That has made it much easier and much more peaceful for me to be here.

Matt left for Colorado Tuesday morning. We got up at 3:45 a.m. to make his 4:30 a.m. train. While we were driving across town to the train station, I, the more experienced Amtrak traveler, called to find out the train status. It was running three hours behind. So, we turned around and went back to bed. I set my alarm and called at 5:30, and it was still the same. At 7, my alarm woke me up, and I sat up on my mat on the floor and called to find out the train status. Still 7:30. I got Matt up and we told my dad, and then we raced to the train station. I called again, and now the train was coming at 7:49, so we went to 7-11 so Matt could get some coffee. I dropped him off, then, and heard the train whistling in as I drove away.

Apart from being psychotically tired Tuesday, it was a very good day. Sunday and Monday, apart from being grief-stricken, were bad physicially as well. On Saturday, he developed some tremors. By Monday, he was having full-body tremors. It kept him up Sunday night-- that was the cause of *his* insomnia. The nurse came and recommended increasing his Ativan. Monday night when my dad was taking his evening meds, he didn't get a drink soon enough and threw up all of his meds and then dry-heaved into the bed pan for awhile. Matt was in the room with him, and I stayed out until he seemed to be done, then came in with saltine and ginger ale. When I was back in the kitchen, my dad got up and tried to take care of the bedpan himself until I relieve him of it.

Possible causes of tremor: An electrolyte imbalance; the cerebellum is affected by the cancer in his brain; anxiety; the cold.

The tremors are gone now, and my dad says that as long as he is warm enough, they seem to stay away. I'm not sure what the underlying cause was, but I do know that tremors are awful, and if they hadn't gone away, I can't imagine what that would have done to completely shred his quality of life. However, Tuesday, he woke up rested and with no tremors.

We watched a lot of TV together Tuesday. I was also trying to work, but I needed a nap. I tried to go lie down, but my dad has the TV up full blast. So, I stopped trying to work and watched Carrie Fisher and Debbie Reynolds on Oprah instead. Then the news. The Utah news is horrible. Every night is some new horror. Last night, a 40-year-old man was sentenced to 30 years for kidnapping a 4-year-old child from the toy aisle of Deseret Industries and raping her in the bathroom. A couple's car crashed into a canyon, and it was revealed that the father of the couple had recently had charges of sexual abuse brought against him by their three daughters. For a small-town girl from Missouri, where the biggest crimes seem to be meth labs and the occasional convenience store robbery, the news shocks me night after night.

My dad didn't sleep well last night. I did, but I also got a lot of my work done yesterday, so today I sort of feel at a loss for what to do. I've been plowing through Dexter, but the storyline isn't grabbing me in the third season like it was in the first two. Crocheting? Meh. Baking? Who is going to eat it? My dad has no appetite, and I don't want to gain weight. I feel a little bit at loose ends. My dad is resting, and in these quiet mornings, with only the banging of the oxygen tanks and my fingers on the keyboard, I hate to interrupt the silence with the phone calls I have to make today: Set up long distance for mom, set up a bank account for her with a debit card, ---

The phone just rang and jolted me from my quiet complacency. The housekeepers are coming. Matt and I have struggled with whether or not to continue their visits. We can (and do) keep the house pretty clean. However, these women depend on this weekly income, so they come and do a deeper clean than we have been doing, and that is a nice thing. I just have to figure out what to awkwardly do with myself while they are here.

When I walked into the house on Saturday night, it was freshly cleaned. The kitchen counters were white and free of crumbs, the dishes done. It smelled clean. I wish I could say it was like I had been gone for a week, but it wasn't. It was like I had just come upstairs from not enough sleep, and there I was.

Beloved Child

noreply@blogger.com (Jen) — Wed, 16 Feb 2011 19:34:00 +0000

Hey Sweetie,

I just wanted to write you a proper note in addition to our texts and telephone conversations. I was thinking last night when I was lying in bed that apart from my parents, when I was growing up, you are the one person with whom I have lived the longest. I think you are also one of the people with whom I have had the longest, healthiest, most precious relationships. Our bond is very special to me.

I have been thinking about how you are shutting down emotionally, and I think that is a normal and appropriate response to stress. It's a coping mechanism that I never really mastered. I have always feared shutting down emotionally, so I have remained open to very hurtful and harmful situations at times that I probably should have shut down to protect myself. I do believe that your stresses and the causes for your emotional shut down are largely temporary. When I return home, when this year of school is done, you will start to open again naturally.

Socially, you may not though, while you remain in high school. And that's okay. It sucks, but all those movies and books out there about how shitty high school is socially and emotionally exist for a reason. It's because high school is shitty socially and emotionally.

I always used to say to people my own age, and perhaps even to you, that if high school was a great experience for a person, I probably do not want to be friends with that person. I can't imagine how vapid that person must be to have had a positive experience. That person was probably very popular, and will probably lead a shallow life that never matures much from high school.

Of course, I could be projecting, LOL.

But I just want you to know that I think about you all the time, and I worry about you and your brothers, but I know you will be OK. You have an extremely strong character. Honestly, it blows me away.

As a parent, I have found that despite my constant presence as an influence in your lives, I don't have as much influence on who you boys are becoming as maybe I like to think. I know that I can't take credit for your character, though, I am extremely proud of it. It's not that I wouldn't like you if you didn't have it-- but you have it and it's amazing.

I don't know if I have been able to show or impart to you how perfect I think you are. OK, now I'm starting to cry. I love you with every fiber of my being. I am so grateful SO SO SO extremely grateful to have you in my life, to be your mother, and to have the privilege of knowing you. I miss you so much that sometimes I think I have to emotionally shut down a bit, too, just to endure this separation.

I cried on the plane all the way to St. Louis on Saturday. I had my head on John's shoulder and my eyes were closed, but tears were just pouring down my face. I couldn't do anything about them. When I'd open my eyes, a whole bunch of them would fall at once in clumps like grapes, splashing onto my lap. I've never experienced anything like it before.

I have experienced some really really tough situations. Your Group Strep B and being in the NICU, Tommy being hospitalized at 5 weeks old, my marriage and divorce from your father, your being hit by a car, Christian's Asperger's and diabetes, the horrible grant I did, my friend Karl's death...

But even though all of these situations have been absolutely harrowing and I didn't know quite how I'd endure any of them, I'm still here. And I now believe that all of them put together have prepared me, have given me the emotional callouses I need, to endure this. I can't imagine walking into this situation without having had those other experiences.

So, know this: Even though you are hurting now, and even though there doesn't seem to be a light at the end of this tunnel (I am truly projecting now), I know from my other experiences that we will get through this.

It hurts me when anyone I love is suffering. It hurts me to watch my dad come to grips with his mortality. It hurts me to see my mother's suffering and confusion. It hurts me that my children are hurting. I think everyone else's pain bothers me more than my own, because I *know* that I can survive my own. So, I want to come in and take on some of your suffering too, so you don't have to experience it.

However, as a parent, I realize that a) I can't do that. It's not even possible, and b) if I did, it would deprive you boys of developing the coping skills you are going to need to face unimaginable and unforeseeable hardships during your lives. Granted, you're starting with a huge one-- it's the biggest one I've taken on so far.
So, yeah, I expect it to suck. I expect all of us to be miserable and unappy. This experience may leave some scars. But think of this: My C-sections left me with a permanent scar, but the pay off was enormous. Enormous. I get the chance to spend my father's last weeks with him. Not everyone has that. And there is a difference between scars and pathology. I know that you boys all have the tools you need (and these tools are being honed and sharpened by this) to get through this without bitterness, without completely shutting down.

Do what you have to do to endure this emotionally, but understand that when you come through it, you'll be stronger than any weight-lifting in your father's basement can make you.

When Tommy was in the hospital, someone gave me Stones From the River to read. It was a book about WWII in Germany, and I remember sitting there reading a passage about how the German people found out through horrifying experiences how strong they were. I was sitting there, with my baby in the hospital, thinking, "I NEVER want to find out how strong I am."

Ha! I don't think my hoping that sealed my fate, but I certainly didn't escape it. There is a Mormon hymn I find myself singing, and I'll sing it to you sometime: "Father, from me, remove this cup. But if thall wilt, I'll drink it up."

The only way out of this is through it, no matter how many detours I've looked for.
We will get through this.

I love you.

Mama