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.

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