Thursday, February 17, 2011


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

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

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

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

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

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

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

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

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

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

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

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

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

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

I laughed about that for the next two days.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, February 16, 2011

Beloved Child

Hey Sweetie,

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

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

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

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

Of course, I could be projecting, LOL.

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

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

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

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

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

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

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

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

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

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

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

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

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

I love you.


Saturday, February 5, 2011

Routines or ruts

Matt found a demo scanner, so yesterday, my niece Cassidy scanned photos for hours and hours like a pro. A lot of them are upside down. We scanned six or more at a time sometimes. I'll try to do something more organized with them later, but my mom wanted the photos, and I wanted digital copies. So, after we scanned them, I returned her albums to her yesterday. You can see the pictures here. They date back more than 50 years.

This week was difficult in new ways from the previous weeks. This week, I hit a real wall in terms of depression and missing my family. I finally booked a flight home for tomorrow. I'll be home until next Saturday, unless I come back sooner, either because I feel pulled or because something happens.

My dad's stats are really good. The doctor and the nurse are really encouraged. But last Monday, we had a scare. Sunday night, my dad was having some trouble breathing. After he got up to go to the bathroom, he said he just wanted to lie in bed and breathe, and he was panting a bit. I asked him if he wanted to do an albuterol treatment, and he didn't. He then went back to sleep.

Monday morning, he said he needed his address book, a pencil, and a notebook. I handed him one of my moleskin notebooks with graph paper and he said, "Oh, I remember buying this." I didn't say anything because for all I know, he bought some just like it. He wrote for a bit, but mostly he slept and slept and slept. At lunch time, he got up to eat a bit and I asked him what he was writing. "My obituary."

I just looked at him, and he said, "Somebody's got to write it." True enough. But it scared me.

Matt and I were scared that Monday might be the day, so I called hospice and told them my concerns-- he was also worried because his abdomen was hardening on one side. The hospice doctor came, though, and my dad got up and was alert, lucid, had great stats, got up and walked around, and the doctor said he looked fantastic. The nurse came and said the same thing. One lung doesn't sound so great because it has fluid around it, but the doctor said that he could possibly keep doing this for a few months.

As great as that is for my dad, it's caused Matt and I to have to reassess a bit. I mean, we're on the ride now. We are committed. We are taking care of him, and that means we are living here in his house. But it's taken me this week to change my mindset from thinking that I was coming out for two or three weeks to two or three months. I'm going to start accepting work again. I started watching the first season of Dexter while doing the exercise bike for an hour every day, and I was so happy for something new to think about.

Matt and Heather have been getting their kids out every day. On Monday, we had to go up to the nursing home, so we arranged for our uncle and then the neighbors to stay with Dad. He was irritated later because we hadn't communicated with him, but I also think that he just doesn't like it when one of us isn't here. So, I have been staying home with him a lot. I don't really need to get out of the house every day-- I certainly don't when I'm at home. So, I haven't been itching to get out, but I just hit a wall of homesickness this week that put me in a slump. So, one day when Matt and Heather got home, I headed out to the garage and made phone calls. I turned on the space heater and found a pear cider. There was no bottle opener, so I tried using a lighter and I tried using pliers, but finally just went into the house to open it, then went back out to the garage. I was also trying to set up video messaging so I could SEE my friends and family. That helped a little bit.

I think I'm going to start trying to do some work again. With the high anxiety and drama of dealing with our mother daily mostly abated (we still have to take care of a lot of things and make a lot of phone calls), I think I can take on some work. I think it might be good for me to have that to focus on and think about. I try not to be on the computer when my dad is up and out because he's old school and doesn't like it. So, as a result, I often find myself in the recliner working on word search puzzles while he watches sports or the horribly violent Utah news.

Once I felt comfortable enough leaving my dad to book my ticket home, I also started a daily barrage of asking him, "Do you want to get out? Do you want to go for a ride? We could go out to eat or to a movie? Do you want to work on your memoirs?" Just because if there is going to be some more time, then I want him to start thinking about things he would still like to do. So far, he's only taken me up on writing the memoirs, which turned into writing his obituary on the computer.

But I understand that even though his oxygen levels are great and his heart rate and blood pressure and potassium levels are also great, cancer is raging through his system. He gets up and around a lot by himself, and even takes off his oxygen sometimes to go out to the garage to get an Ensure or go beyond its radius. Matt and I just sort of look at him in disbelief when he does this, but he doesn't do it for long, and there are lots of high-backed stools and couches for him to brace himself on. We are always on hand in case he should fall, which he hasn't yet. However, we have been virtually assured that it will happen.

It is hard enough to wake up every day and know that we're here because our father is dying. However, there is nothing worse than the feeling that we are just sitting around away from our lives, waiting for him to die. I don't want that for any of us-- I would prefer to focus on his living, to the extent that his fatigue allows. And that also includes Matt and I continuing to live, beginning with my visit home and then my taking on work. I have yarn out here and crochet hooks, but I haven't felt even the slightest urge to use it. I read books at night before I go to sleep sometimes, but mostly by 9 or 10pm, we are all so exhausted that the lights all go out. My dad usually goes to bed at 8 and he used to wake two or three times a night, but he is sleeping longer stretches now. I think the meds they were giving him to bring down the fluid in his abdomen have done most of their work, so his system isn't as pressed to get rid of it now. But I have learned that my medical guesswork is, apparently, pretty inaccurate so Matt and I sort of shrug now because we don't really know what's going on, and that's ok.

It is much easier to turn off my brain and not crochet and not work and just do word puzzles and just exist than to accept the fact that part of getting back to my life includes accepting that I am out here for the duration. When I go home tomorrow-- for which I am terribly excited-- I know I'll be anxious to return to my role as caregiver here. Matt will be out here juggling everything on his own. I worry about the weather, about my dad declining suddenly. However, mostly I feel a heaviness in my chest because I am going home to visit. I am returning to my life to visit it before I take up my life out here again. It has been over three weeks since I have seen my family. I get five days with them and then I have to return for another two and a half weeks (that seems to be my maximum limit) before I can visit my life again.

I find myself putting down this address as my home address because it's just easier and more accurate than my Missouri address. I have a daily routine: Get up at 7am, give Dad his morning medications (which means waking him, and that makes me feel mean); go back to sleep a bit; Matt and kids start to wake up, make coffee, so I get up. Matt puts away my bedding every morning. I get it out every night. At some point, I will use the exercise bike for an hour, but I have been hanging out in either my pajamas or my work out clothes. My dad sleeps all morning, then ensure and a breakfast bar for lunch. We do albuterol treatments after breakfast and after lunch, then usually before bed. He will read the paper and have a little cereal around 9am or so, a bit of magazines, watch some TV. He'll nap again. Then, afternoon meds, and he'll get up around 4 or 5 and watch the news or sports or both. Then watch more crap on TV til bedtime at 8 or so. Evening meds, including putting out three percodan to help him sleep. They are always gone by morning.  I'd say he sleeps 16 or more hours a day.

So, I have this routine now. But I hate all of it. I am at peace with towing the line and being here for my dad as long as he needs me-- but it is very difficult. It's difficult to be so homesick and still smile and be pleasant in tending to my dad and hanging out with him. I found myself retreating into my head this week because I was so unhappy that it was easier not to say anything at all than to try to pretend that I was OK. My dad is a pretty sharp guy and he has noticed. He's glad I'm going home for a week, because I know from his friends that he wants most of all not to be a burden to Matt and I-- or to anyone, really.

He misses my mother, and the guilt and sadness I have felt over this has just about cracked me open. My mom sent a Valentine to him with her sister, and my dad read it twice. He has been telling people that it's weird because she has been there for nearly every major event in his life. But not this.  Did we rush her out too soon? Does he want to visit her? Does he want her to visit? Does he want her back here? These are the things that keep me up in the middle of the night after my dad has gone to the bathroom and returned to his bed. I tell myself that missing her is not the same as wishing she were here. I tell myself that he has never really gotten to grieve for the person she used to be because she and her dementia have been so fully in his face all these years. I tell myself these things, but it doesn't help. She misses him too.

She is settling down and not so angry anymore, but she is aware that she should be here for these last days, and she is furious that we have robbed her of this. I am too. There are no good solutions. Having her here was impossible. But every decision we make these days hurts someone. The only thing we have control over is who to hurt and how much.

Tuesday, February 1, 2011

I am exhausted, disheartened, bored, sick to death of being out here, stuck in this situation, stuck in this house (even after getting out today), sick of not knowing when I can go home, sick of missing my family and friends.

And today the stupid idiot used car lot of a fucking nursing home told us they think our mother needs the lockdown unit. She has not been wandering out fo the building-- she is just a huge pain in the ass. And I am hugely pissed. My dad is pissed at us for making plans to go to the nursing home today and then out to lunch with the kids, asking his brother-in-law and then a neighbor to stay with him while we went out. My dad was like, "I didn't know what was going on today. I didn't know you were going up there until right before you left and told me H was coming over."

I can understand that he felt mad that we had just made arrangements without consulting him-- but honestly, did he have PLANS today?

I'm just sick to death of this.