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.


  1. "Since I have once again chosen to wake up and be alive, I might as well not waste it. "

    Indeed not, so I'll be impertinent and demand some yummy first draft to peruse when you come home.

    I can hear you now - "Impertinent my ass - who does she think she is!"

    Nemesis or friend - take your pick. The lamp is lit.

  2. I wish I would have known you were going to Avenue Q! We were there as well and really enjoyed it, other than the sweltering lack of air circulation where we were seated.

    Love you, dear!