Thursday, March 31, 2011

One more thought

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.


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."

Wednesday, March 30, 2011

Caught in the Rye

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.

Tuesday, March 29, 2011

Mistakes were made/ Riding the rails (Updated)

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.


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.

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.

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.

Sunday, March 27, 2011

The cream in the milk

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?"


"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.

Wednesday, March 23, 2011

Writing is a Double-Edged Sword

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.

Tuesday, March 22, 2011

Buying glasses and cleaning pools

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."

Monday, March 21, 2011

And after a long hiatus, we're back!

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.