Sunday, January 16, 2011

Odyssey

I took the train out mostly because it was cheaper than flying, and also because the train station is closer to my house than the airport. And also because I wanted some time alone. It didn't turn out to be a great cross-country odyssey, though. On Friday night, I sat in my seat, whizzing across the countryside, eating the Subway sandwich my friend John thoughtfully packed and gave to me, and drinking. I drank two ciders while watching Breaking Bad on my computer.

I had a little shot glass in my purse. Dereck bought one two weeks ago-- yes only two weeks ago-- in the airport when we were flying home from Christmas with my parents. My dad had a year to live. I was planning to return in 4 to 6 weeks when he started chemotherapy.

It is still less than two weeks since I left.

The shot glass says, Eat, Drink, and Be Merry, for Tomorrow You May Be in Utah. My friend Michael, also from Utah, got me one on *his* way back. I guess it was just that kind of Christmas break.

Along with my shot glass, I had a bottle of honey bourbon, so I started filling it and drinking while I watched. I may have lost track of what I was drinking, there in the dark. I got off the train around midnight for a cigarette and realized I was tanked beyond anything I would have guessed when I didn't have to move. I was grateful, though, because it is hard to sleep in a chair on a train. I went back up to my seat, put my computer away, and passed out on a heap of down coat, train pillow, quillow, and travel bag.

Until 4am when I had to use the bathroom. Got up, went downstairs, used the bathroom. Went up. Tried to sleep. Went back down to the bathroom. I can't remember whether it was my second or third trip down that I knew I was going to throw up. I was hoping it was the kind of hangover where one good vomit will cure what ails you, and then you can sleep it off. Hahahahahahahahaha.

I went back up to my seat and was down again in that bathroom faster than I know how I managed it, in the dark, down a narrow, curved stairway, on a train. The movement of the train made me sicker. But, I tried to go upstairs again, ever hopeful. Again, I managed to get downstairs before I was really in trouble, but I had to charge into a different bathroom. This one was handicapped accessible, and a little bigger. I dry heaved for awhile, and then sort of sat on the floor and dozed between sessions of dry heaving. At around 7:30 a.m., I was able to make it back up to my seat, hope nobody had heard me upstairs, not care though if they did, and slept until nearly noon.

So, my plans to work on the train Saturday were officially over. I managed a little sprite and some pretzels and then later some pepsi. I watched more Breaking Bad. By 4pm, I was so sore from the train and sleeping awkwardly, and my little sojourn on the train floor that I was pacing in an empty car because sitting hurt too much. I signed up for a proper dinner, and just kept sort of walking back and forth, pausing to look at the beautiful Rockies whizzing by. Good thing I've taken this train ride before multiple times, or I would have been sorry to miss it.

At dinner, I sat with a nice couple who lived in California, but had been visiting their son in Denver. We talked about their careers, my husband's career (they never ask what I do-- just what he does, and I didn't really care, so I didn't bring it up), our kids, and sort of listened in on other table conversations about the awful train dessert options. I ordered a steak and baked potato, salad, and veggies. I knew I had to replace the electrolytes and calories I'd lost, so I also had two cups of milk. The glass of shiraz I ordered sat untouched. I ate half the steak. It was very good-- but my stomach was still Angry. I didn't even ask for a doggy bag. I didn't want to sit and have to smell it for four more hours on the train. It seemed so wasteful, but I let it go.

Then, I crawled back to my seat for more TV viewing until we reached Provo, where my brother picked me up.

It's disrespectful, but since my dad isn't home right now, and he won't be going into the garage much I bet, I've sort of set up a little station with my cigarettes, lighter, and an ashtray I made out of a plastic bottle filled a little way with water. It's better than smoking out on the porch in front of the neighbors, and not as cold. But it does stink up the garage.

My mother had been angry with me for a few days. I had been on the phone with her, had another call, and told her I had to take it. Last week was complicated-- my mother didn't see my father all week. It wasn't until Friday, I think, that my brother told her how grave my dad's condition really is. She is absorbing it all sort of like a sponge with a hole in it. (Yes, that's a joke, albeit a poor one). Some sections of the sponge get wet and absorb water, and in other places, the water just runs through and information never really settles in. When I got off the phone with her, though, she thought I was angry with her. We had been arguing because my aunt Susan offered to take my mother for a week (or a month) as a transition time before a nursing home (or assisted living facility-- she doesn't need a skilled nursing home yet). She didn't want to go, so when I got off the phone abruptly, she misunderstood, and I didn't remember to call her back. In fact, I avoided speaking to her a little because I was afraid I'd tell her over the phone that my dad is dying, and I didn't want her to be told that way.

When I woke up this morning, I knelt before her first thing and told her that I wasn't mad, that I had another call, and that I love her. Don't go thinking I'm a good daughter just yet, folks. I do what I can, but on and off the day, we also bickered. She is tucked in at night like an exhausting (and exhausted) preschooler, and I am sitting in the dark in the living room like the repentant mommy who thinks they are so cute when they are sleeping. Only my mother wears a breathing apparatus for her apnea that makes her look like an elephant, and it's way more irritating than cute when she walks around the house in it for an hour before she goes to sleep. She did that so she wouldn't have to interrupt my dad when he went to bed, though. I noticed that tonight she waited until she went to bed to do it. I was touched by the consideration she showed him when he was here. She wants me to sleep with her tonight, but I don't know if I can. The mattress is one of those weird, plush things that won't move when someone else gets off the bed. It's hot up here. I don't want to turn down the heat, because my brother is in the basement, and ever since his stroke, he gets cold and it's hard for him to get warm.

And it's my dad's side of the bed. I want to comfort her-- my grandmother wanted me to sleep with her too, when my grandfather passed away. But I can't sleep in my dad's place. Even though he is still alive. That part is so very temporary now. I could tell when I got to the hospital to visit him today that he wasn't sure I was going to make it, and I immediately felt guilty for not flying. He told me he worried about me all weekend. God. I just saw him for five or ten minutes. He gave me his hand. We were able to be in the room as a family and tell each other how much we love each other. He was wearing an oxygen mask,and it was hard for him to talk. He told us he wanted to sleep, so we left.

When we got down to the parking garage, I lit a cigarette. Matt and my mother didn't say a word. They got the car and pulled it outside, letting me walk, smoking, and wiping my face, to join them and drive away, leaving my father there.

Tomorrow, he will be transported home by hospice, and they will set up a hospital bed for him. He asked to be in the guest room. I think I understand that-- it's near the bathroom, and easy for him to call to us in the next room. I wonder also if it isn't that he doesn't want to die in the bedroom where he lived. I don't know. I don't want to ask-- it seems personal. I'm not questioning his decision. I do have a morbid curiosity though, and maybe I'll regret not asking, or just be my typical gauche self and ask.

We went to Red Lobster for lunch after the hospital, but we asked for the meal to go after all. It's very hard to describe a day with my mother. I need to read more about dementia because I don't understand the whole holy sponge thing-- why she gets that she needs to have a colonoscopy next week, but doesn't understand that when my dad comes home, she isn't going to be able to barrage him with questions about burial plots and finances. She is very upset because she wants to have a lot of cash on her. But she loses cash-- just shoves it into her purse with five lipstick tubes and seven half-empty bottles of eyedrops, and a bottle of Hydrocodone. She took four today because she was having a lot of pain-- that is the maximum dose in a day. I need to take that bottle from her and monitor that.

We explained over and over and over that she has a credit card. She has $73. We are here. She doesn't drive. In any circumstance in the world in which she would want to spend money, someone else will have to take her. She is arguing, albeit ineffectively, for autonomy she cannot have and we cannot give her. She is furious, confused, and upset. However, the simple fact is, her life is going to change in huge ways. She cannot live on her own. She can't even stay in the house on her own. I may sleep on the couch because I worry about her being upstairs on her own. She wants to move in with one sister, or move in next door to another. We told her that the first is a short-term solution, the second is out of the question. She insists that she is good with money and turns off all the lights before she goes to bed.

She is not going to make this easy for anyone.

Today when we got home from the restaurant, I pulled Matt aside and told him that maybe we just have to let her *see* that she can't function alone, starting with not getting out her food and fixing her a plate. Make her do it herself. We had to stop when she tried to pick up a hot pan without an oven mitt, just to move it aside. Fortunately, Matt was right next to her. But it's clear that she cannot even fix herself a place of food, get herself a cup of coffee, or wash a dish. She can use the channel button on the television to go up or down one channel. That is all. She cannot turn the TV on.

Every day is like a Heinrich Boll short story. She gets up, talks about how the pain is worse than it's ever been, and gets up and goes to the bathroom. She comes back, talks about how she can't find her eye drops. She sits down. She gets up and goes to the bathroom. She comes out and starts talking about being constipated. My dad's sister called. My mother wanted to talk to her. "How are you doing, Pat?"

"I'm not doing very well. I'm very constipated."

I finally asked her what I'd considered asking her at Christmas time. I know of one option she could try for that problem. She said she would try it. So, I took her to my little smoking circle of the garage and tried to teach her how to smoke. She wasn't bad at it, though she complained later that it upset her stomach. I think it did help a little too. I mean, come on. She is 70. What the hell is the point of not smoking now?

There are about four central conversations we have throughout the day: 1) she needs to get her hair done  2) the pain is worse today than it has ever been, and she cannot figure out why 3) she has to go shopping because she has had these shoes for 2, 5, or 20 years, and her feet hurt. She can't wear the new ones she just got, because... her feet hurt. 4) Is anybody hungry? Are you hungry? Are you? Until one of us just can't stand it anymore and gets up and makes food for her, because no, we are not hungry. We are sick at heart, we are hung over, we are away from our loved ones and children, and our father is lying alone in a hospital bed, sleeping away what little life he has left, while trying to breathe.

My brother finally cornered the doctor who kept spouting out bullshit like, "Two to three months," and the doctor confessed that he is the Pollyana of doctors and it's more like two weeks. Thank you, Dr. We don't want Lewis Carroll. Take off the fucking rose-colored glasses. You told us two weeks ago that he had a year. Just fucking tell us the truth. There are things that must be done. My father has been my mother's only caregiver. We must now step in and fill the role, figure out the medications, cancel his appointment with the cardiologist on Tuesday, and grieve while we are taking care of them both.

My sons are worried about me. I told them, "It's not like we sit around crying all day. We watch TV. We fix food. We bicker." But honestly, I have no idea where this day went or what I did with it besides manage my mother, alternately trying to be patient and then raising my voice. We raise our voices because along with the dementia, she also has a mean streak a mile wide. She told us from the backseat today that she wishes she had thought harder about having children if we were going to put her into a nursing home. I just laughed and told her, "Well, we'd both still be here anyway, so go right ahead." Adopted children can get away with that shit.

See? Not a very nice daughter. But honestly, she would try the patience of a saint. My dad would be gunning for sainthood for keeping her at home if he were so inclined to run.

I think some of what we are saying is starting to sink in... until tomorrow anyway. She asked finally if she could look at the facility before we just moved her in. Yes, of course. She asked if she could have her couch. Yes, of course. I don't know where this reluctance to go to a facility comes from. I guess I make my office from my laptop bag, and I make my life largely with my loved ones and friends and too much stuck-in-my-head time. Which four walls surround me don't make that much difference. I know I'm going to end up in a nursing home, and I know that I may eventually get dementia. She keeps asking us, "How would you feel?" and she loves to tell us that we do not know what suffering us. Not compared to her. Let me remind you that my brother had a stroke in November.

We tell her, "We know that this is very hard. We are not trying to abandon you. We are trying to do the right thing, and this is very hard for all of us. But the responsible thing is not to hand over the bills to you and let you live alone."

"But I know how to write a check."

The possibility of online bills is outside of what she can grasp.

How do people do it? How do they put their parents into facilities? If she refuses to go, then we will take the awful next step and have her declared legally incompetent. I mean, we will have to, because it's not fair to anyone to take her on full time. It sure as hell wasn't fair to my father. But my father made decisions in part based on his desire and ability to be the very best father he could be, and I support those decisions 100 percent. Life is hard. Love is not fair. She is having a very hard time dealing with what she considers to be the raw deal of her life. Who is this woman who raised me? How do I understand that life doesn't owe us anything, and she does not understand this? We tell her over and over, "Do you think we are happy about this? Don't you think we wish you could live on your own? Don't you think we wish it was different?"

Oh, but her neighbor lives alone, and her husband died. My grandmother lived at home until she died-- almost to the minute. She died in the car as my uncles were trying to rush her to the hospital. I can't imagine how horrible that was for them.

The hardest parts of all of this are the ones I can't quite articulate yet. Wondering how my dad feels, what is he thinking? Is he ready? He told his sister he is at peace. Is he?

My friend Chris lost his mother very suddenly on New Year's. He gave the sermon at her service, and he shared with me this quote from his grandfather, with his comments after:
 If I could have one wish for my children, and I’ve thought about this, it would be for each of them to experience, recognize, and appreciate one day of tranquility. One day. It would be too much to ask for that to happen to all of them on the same day,that would be a miracle. But, if I’m wishing…

That’s what he wanted for all of us. Of all the things he could wish for, that’s the one he picked – tranquility. That stuck with me. Later when I was in college and studying philosophy, the question came up: what is the highest good? In other words, what’s the best thing to hope, wish, or strive for? Do you know what Aristotle arrived at when pursuing this argument? Tranquility. Now, I’m certain Donald Hillis never read any Aristotle, but he instinctively and intuitively put his thumbtack in the same place on the map as did one of the most important minds in the history of philosophical thought. Granddad wanted tranquility for his offspring; more than happiness, more than confidence, more than success. That was his wish.
And I am sharing this here, not only because it's beautiful and eloquent, but because yes. Tranquility. I want my father to have tranquility. I want him to have peace. He told his former graduate student and friend last week that he has had a good life, but he was still wrapping his mind around all of it. It is happening so fast. I was happy that he told his sister he is at peace. It's hard for my father to talk about emotional things with the people he loves the best. The corollary is that I know if I were in his place, the hardest thing for me would be to leave my loved ones behind with their grief. So, I am trying not to show him how much this is affecting me and how much this is hurting, because it will hurt him.

The thing about most of us growing up and knowing that sometime, somewhere, chances are that our parents will not outlive us. But each death is impactful and important and significant, particularly when it is our parent, the person who has always been there to answer questions, provide reassurance, who has been there every. single. day. of our lives.

I can make myself crazy wondering if my father was happy enough, thinking about whether or not I believe in any kind of after life. What is awful is that I won't wonder about my mother. I know she has had a mostly unhappy life, filled with suffering, and that is going to be awful in entirely other ways.

It would be so comforting to think.... but I don't know. I don't know. I am not going to have a deathbed conversion when it isn't even my deathbed, and I'm not really sure what my father thinks. But I think he thinks this is the life we have. And if this is all we have, then what I wish for him most is tranquility and to be able to let him go.




3 comments:

  1. You are the most beautiful person I know. Love you, Jen.

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  2. You use words like a brush, creating a very vivid picture of what you are experiencing. For this I give you high praise. This is a most difficult time and I find your words to be a blessing because I have experienced the deaths of both of my parents but did not have the skill to capture how I felt or what I was going to do. In some ways it is like looking into a mirror and seeing back 16 and then 32 years. We had no death bed conversations; this was not who we were. Reflection was not in our vocabulary. So, dear Jen, thank you for this insight and a chance to again think about the passing of my parents. Our prayers are with you as they rise like incense before the Lord.

    Love, Tom

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  3. Tommy talked to me today about what you're doing. He said he's not even going to try to sleep on the train when he comes out. He said that trying to sleep on a train really has no point.

    I am thinking of you and holding you up in my prayers. Please know that while you might feel alone in this, you are not.

    rebecca

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