Rollercoaster

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.
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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.

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.

Mama

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.

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.

Mr. Joseph

*Just so I won't forget: Yesterday was my late Grandpa C's 103rd birthday. Happy Birthday, Grandpa.

Yesterday, I spent about three hours looking through the house in every nook and cranny you can imagine for two boxes of my mother's pain patches. She would hide them from us, and then we would find them and hide them from her. Last time, I think I hid them from her. But I cannot find them ANYWHERE. This led me to believe that she must have re-found them and taken them with her, but when I called and told them to look among her things, they could not find them either. So, Matt is heading up there now with one of the fifty or so lower mg patches we *did* find. It will work-- we think the patches are mostly psychological in benefit anyway. Her pain doctors told her that they wouldn't up her meds anymore without a psychiatric evaluation.

While I was searching, I found myself singing over and over again, "Children, don't let your parents grow up to hoarders." I cleaned out a dresser with nine drawers full of socks. I have three white garbage bags of socks ready to take to the DI (Deseret Industries-- the Mormon Salvation Army). And she asked me to take her to Sears to buy socks every day she was here with me. On the last day, I pointed to the dresser and said, "Have at it." And then had to hear that those were MEN's socks, and her feet are swollen so HER socks don't fit. I told her her feet don't know the difference, and that she just said her feet are swollen. She said, "Well, I know they're just SOCKS to you, but they aren't just socks to ME."

"Mom, they are just socks to every other person on the planet except you."

"I know you hate me."

Blah blah blah blah-dee bullshit. That is something I say a lot.

So, yesterday morning, we had gotten a call about the patches, which prompted the search. I had already cleaned out one of my father's drawers, so I figured we may as well start sorting through everything now, believing it would probably be easier on me emotionally with my father still alive.

That was true and not true. I cried at some of the things he has kept that surprised me-- like his Eagle Scout sash, his parents' rings, his high school class ring. I found an old name tag from his work place in Denver that said "Jenny C___" on it, and that made me cry too.

But another thing that I sort of expected and sort of didn't was that when you finally go through someone's house, you are going to learn all their secrets. You are going to learn things that embarrass you and that you did not want to know.

"I found mom's vibrator."

"Shut up. Really?"

"Don't be ridiculous. That woman never had an orgasm in her whole life."

"Fuck you."

So, I didn't really find a vibrator, but I found other things.

And among the things that I found that didn't embarrass me was about ten emory board/manicuring sets, about ten disposable cameras, two pairs of really nice leather gloves, my dad's old binoculars, a brand new electric toothbrush, countless bottles of eyedrops, several little makeup cases that had held free samples from Clinique, but were now empty. About three pairs of gorgeous hand-knitted slippers or socks or something, probably from Holland. I thought about keeping those, just because they are from Holland, but I figured that was a stupid reason, so into the bag they went.

I don't really feel that sentimental about this stuff. There was a painting that I've always thought I'd like to have because it reminds me of my mother saying it reminded her of me. But this past two weeks have been so harrowing that now I don't want it. I know eventually I may change my mind, but it doesn't matter anyway, because she said she wanted it up with her (and changed her mind when she saw it up there. And so it goes.) My dad has a scanner, so if we can figure out how to work it, I'm going to ask my niece, 13, who arrives today, if I can pay her to scan tons of photo albums. Then we can all have copies of the pics, and even get Mom a digital frame. We aren't completely heartless. We want her to be comfortable, but we realize that things like that are more for our benefit because we think she *should* like them than because she actually *will* like them.

I had a half-hour conversation with a very nice woman named E___ who was assisisting my mom yesterday. We told them in advance. We put it on a six-page questionnaire. I guess eventually they will believe us. They thought she was having a hard transition day yesterday because she was upset about them having her pills (and then she pocketed a valium in her cheek, which they found on the floor and then confiscated), about her patch (not due for one til today), about not having the paintings she wants (the ones she was looking for are up there-- Matt will look for them today), about wanting her computer (um, not gonna happen. My dad has made that perfectly clear. Matt went and checked with him again today and my dad was EMPHATIC that she has never even turned it on. He just got it for her to shut her up because he was getting one. I said, "Why don't you go ask him if he wants her to have one of the cars, too?"  He flipped me off.).

I told the staff, both people I talked to, "This is not her having a hard transition. This is HER." I talked about her frequent complaints to E___ for awhile, and she mentioned that she had already heard a lot. I told her that my mom would probably lift her shirt to show her the patch and show her everything else too. That has already happened. I should have told her about Pat Bingo, or the Pat drinking game we devised at Christmas. I asked her if Pat had tried to take anybody's shoes yet, and apparently she had been walking around in her socks most of the day. I said, "She probably can't find her shoes."

They said she had told them she hadn't slept the night before. "Did she have a trazadone? Hydrocodone? Valium? Yes, yes yes? Then she slept just fine. If she hadn't, you would have known about it." All of the residents wear call buttons around their necks at all times, and if she had been up, she would have been calling them. I explained that my mom always says:

• This is the worst pain say I've ever had.
• I'm dizzy.
• The room is going round and round.
• I am sick.
• I'm constipated.
• I didn't sleep last night.

I said, "I have been here for about a month total since Christmas, and for the past two weeks right next to her bedroom. Every time I get up, she is snoring. She is fine."

Last night I felt guilty that I hadn't spoken to her at all. After I had cleaned/searched for hours, I was exhausted, so I fell asleep on the living room couch for awhile while my dad and Matt watched sports. Then I did the dishes and helped Matt with some laundry and encouraged him to go to bed around 7:30. He tried to take a monitor with him, but I told him just to get some sleep. He has a busy driving day today. I can doze here if I need to. Back to the guilt, though, I called and they put her on. She started in on her complaints and I tried to reassure her for awhile and then I had the exquisite good fortune of being able to get off the phone and not deal with it. I have apologized to everyone who works there repeatedly. They all say it's OK, but we all know that that is a big lie, LOL. Or it will be soon. I don't know whether they charge so much because people are so difficult or whether I just don't care how difficult she is because of how much they charge. It doesn't make much difference one way or another. As Dereck always says, "It's six of one and half dozen of the other."

Yesterday morning, I found a photo album that had pictures from my parents' wedding and my dad's army days, including a woman he'd been in love with in Missouri when he was at Ft. Leavenworth (I think that is where-- the base in Kansas City). Leanordwood? Too lazy to Google. He told us about his army days and that the woman had married someone he worked with. I said, "Aw, I'm sorry, Dad," and he said, "Oh, it was OK. She liked him."

Then he came out to the living room and started talking about when he and my mom lived in Miami when he was in graduate school. The government had confiscated a hotel called Coral Gables to use as a VA hospital, and my dad worked there doing research and working with patients. A lot of what they were doing involved shock treatments in the sixties. There was a woman who couldn't stop hiccuping until they shocked her. Same with a man who couldn't stop coughing.

He said that they had patients who were alcoholics, so they'd hook them up to electrodes. Then they would tell the patients to raise a hand (at which point, my dad imitated them hesitantly raising a hand with a pointed index finger) when they thought about drinking for breakfast. They'd raise their hands and Zzzzzt! He imitated them being zapped. Matt and I were in tears. Those poor people just learned not to raise their hands, not to stop wanting a drink in the morning.

He had one patient named Mr. Joseph. Mr. Joseph was schizophrenic. He would bang his head against brick walls, and rub his forehead until the skin came off. One day, my dad opened a closet and found some really fancy, expensive equipment. He asked the director what it was and the guy said, "Close that door and lock it and forget you saw that."

He later found out that it was a remote-controlled shock machine. They hooked it up to Mr. Joseph one afternoon so they could monitor him rubbing and banging his head while he was walking around the grounds. But the poor guy would just be walking along not doing anything and he'd get a shock and swear. "Goddammit, I wasn't doing anything!" My dad said Mr. Joseph would just be doing his thing and suddenly Zzzzt!  Zzzzt!

Well, there was a golf course on the other side of the grounds, and there was someone using a signal to operate a golf cart. But the signals got crossed. So, the golfers were shocking Mr. Joseph, and the researchers were running the golf cart. Until they ran over one of the golfers.

The machine entered the closet, the golfer sued, and they settled out of court.

And that was the end of the remote control shock therapy for Mr. Joseph.

We have heard that story many times over the years, but I was really happy to have him tell it again, because it's been over a month since I've heard him tell one of his old stories or want to reminisce. In fact, his willingness to look through the photo album and tell us stories scared me a bit.

I haven't been able to expect or anticipate anything about this entire experience. One of the things I've noticed, though, is that we are so ingrained to want to protect life and to protect those we love that when I found out his potassium levels were critically high the other day, it scared me. He choked on his drink yesterday, and that scared me. I know that he is dying, but I am starting to see why people call 911 for hospice patients. The instinct is just too strong. Everything we have tells us to protect life, not to let it end.

Last night, my dad had found his radio, or someone had put it in his room. So, he went in, after a neighbor's visit, to put it on a shelf by his bed. He crouched to plug it in, and then he yelled for me on the monitor because he couldn't get back up. I went in and put my arms under his arms and got him into a semi-standing postion and was trying to get him toward the bed, but I couldn't move him. I could just hold him semi-upright. I have a pretty booming shout when I want to, so I bellowed for Matt and scared the shit out of him. But I couldn't get him up. I have felt bad about Matt sleeping upstairs and helping with night duty, but if he hadn't been upstairs, I would have had to put my dad on the floor and run to get him. I'm here alone with him now, and just hoping he doesn't take a fall.

His abdomen is now shrinking back down, but it's also hardening on one side. The doctor told us to look for this and call. It is sore. I called today to tell them to make a note of it, but he has pain medications, and I don't really know what they can or will do. What do you do when the goal is to help you die instead of help you get better? You try to make him comfortable and you cry when you wash his clothes and you cry when you realize that he might never go outside again (I've offered to take him up to Sundance to gape at celebrities with me. So far, he's not going for it). You cry when you look in a bag in the closet and realized it's his clothes he wore to the ER a few weeks ago, and that he'll never wear them again. You cry when you laugh at his stories, because of every time you've kissed him goodbye and gotten back on a plane to Missouri and wonderd if that was the last time you'd see him, now you know. Now you know this may be the last time you'll hear that story. Or the last time he'll see a Jazz game. Or realize when he talks on the phone it's probably the last time he will ever talk to that person.

Last night, one of his neighbors stopped by. Super nice guy named Norton who takes out our garbage cans and puts them back and moves our newspaper to the porch in the morning. He asked how Dad was doing. I said, "He gets a little weaker each day."

"That must be hard to watch. I've never had to do that."

I guess I sort of thought that this is something that everybody has to go through, taking care of their parents in their last days, watching them begin to get actors' names wrong where they never have before, watching them misidentify actors on TV when they never have before. Watching them forget whether they've had their morning pills, or that it's Saturday, and he gets a shower on Sunday.

Yes. It's hard to watch. I don't know what else to say.

Taking it day by day now

I don't think it's an exaggeration to say that we got my mom settled just in time so that we can fully focus on our next leg of the journey here at home. Yes, it feels a little weird to call my parents' house home. However, since I'm living here right now for the foreseeable future, I suppose it's apt. Last week, he was so strong that I thought somehow that he'd continue like that for awhile. However, this week, his decline daily is visible-- at least if you are his children and watching him sharply.

Yesterday, he was starving when we got home from the nursing home, so Matt went out and got him a burger. My dad had been hanging out with his brother-in-law and then two neighbors while we went up to Sunrise, and he had stayed awake all afternoon. He said that surprised him. It surprised me too, because he has been sleeping so much throughout the day. However, even when Matt brought the food, my dad vanished into his room for awhile with the door shut. His incontinence is growing more and more frequent.

I keep fresh clothes in the bathtub for him, on the shower chair. Last night I added underwear and pajama bottoms, and for the first time, a few Depends. He doesn't say anything to us about the incontinence-- and who could blame him? So Matt and I talked about whether or not to offer him the Depends. We finally settled on offering them silently so it's his choice. I dreamt last night that I found them shoved, unused, into the trash, but when I went to the bathroom this morning, they were still on the shower chair.

His balance is wavering, and he walks more slowly and carefully, though he does continue to be pretty ambulatory. He has been wearing his watch all the time, and this morning I noticed that whereas it was tight just a few days ago, it's now hanging on his forearm. I can't believe the body can change so fast.

I was telling a friend that I wonder if it isn't like the final days of pregnancy when you are so miserable, you would do anything just to get that baby out. Perhaps our bodies do us the great favor, at the end, of making us so miserable that we would do anything to leave them-- or at least be somewhat relieved when we are finally released. It struck me for the first time in my life this morning how intimately tied up to this world we are physically. I mean, of course I have understood my entire life that my body makes me alive-- but I don't think I had any idea what that really means. I have seen animals die in my arms, but I have no experience with people dying. My experience is very limited to funeral homes, and hasn't been all that much at that. So, I am fascinated and horrified by what I see happening to my father's body day by day as he prepares to leave this life. His life.

People have told me they are praying for me and my aunt actually sort of joked that she knew maybe I didn't want my name on the temple prayer list. But I appreciate all of the prayers. I still pray. I pray all the time. It's comforting, and I grew up praying. I can't see that it hurts anything. I have read reports of studies that show that even if people don't know they are being prayed for, prayer has beneficial effects. I wonder if I'd even be conscious and still capable of thought at this point without all of your prayers and support. I will never know. But thank you for all of your well-wishes and messages and support and prayers and love. I do feel it-- I feel it all the time. Thank you.

One of my friends commented that as for funeral arrangements, we could have it in a church for free. The only problem with that is that my father has only three specifications for what he wants:

1. The same funeral home we've used in our family for at least the past 24 years. Maybe more.
2. My uncle Harold to give a graveside service.
3. No LDS service. And that means no LDS church. He has asked me repeatedly  over the years to make sure for him that that does not happen, and so we are determined to honor his wishes.

Any further plans we make are our own-- to gather, to honor, to grieve. Grief is for the living.

I'm not surprised by how many lives my dad has touched with his. I am a little surprised and deeply grateful that all of these people have given him such a tremendous show of love and appreciation. It's a mighty sendoff.

So, yesterday was not as bad as we had anticipated. Not by a longshot-- and that is saying a LOT. We took care of a lot of phone calls yesterday morning. The nurse at my mother's doctor's office and I recognize each other's voices on the phone now. It is critical to get her medication list accurate in part because her care levels increase based on the number of medications she is on. And that increases costs significantly. So, here's the used car deal with nursing homes as far as I can see: You go in without your parent and describe her. They assure you that you won't need any levels of care, from your description. They tell you a price. You write a check and hold the room. Then they start telling you she needs like two levels of care, so the price goes up $600 a month, but by this time, you're exhausted, shell-shocked, out $1500, and where the hell else can you go? That would even compare to the loveliness and competency of this place? I mean, even though I think there is a bit of used car salesmanship going on, I still really love the place and feel comfortable there.

When we were on our way up, Burke called to let me know that my mother discovered their bigger apartments almost immediately and started in on her rampage about how cheap I am. He just wanted to give me a heads up to let it roll off me. She actually didn't start in on me about that, though. She asked how dad was doing a lot. She was worried about whether she had said terrible things to Matt, and she was sorry. She thanked all of us a more than once for coming up to help her. She sat in her recliner sedately as six adults worked around her to unpack her and make her apartment cozy for her. In fact, she was so sedate that I wondered what she was on. I still don't really know the answer to that, but we found two stashes: A box of Fentanyl packages and a bottle of Hydrocodone/valium. Both of which we confiscated. Burke had to hear about that later.

My mom went down to the nurse to have her TB test results read on her forearm, and I told everyone in the room that I was taking her cash, except for the $30 they recommend, and her credit cards. She found out that her cash was missing before we left, and I told her I'd taken it and I told her why. She went shrieking down the hallway to report that I had stolen her money. So, the staff came and told me that they assumed I was doing it for her protection (oh, and also because you TOLD me that's what you prefer), and I was muttering, "No, we decided to put our mother in a $4400/month facility because I get my jollies from stealing $100 from her." So, I gave the money back to her. Then the staff was worried because she had too much money. I just told them, "I don't care if it gets stolen. That's her problem." And that is the truth. It would serve her right.

At one point, my mother asked if she could get a Diet Coke, so I went hunting. I ran into and met the executive director, Ryan, and asked him about it. He said they were having pina coladas for social hour and did I want one with rum? I said, "I knew there was a reason I liked this place." He couldn't find the rum, so I gave my mom the virgin pina colada, but Dude, points for trying.

When we had unpacked her as much as possible, Lori took her down to dinner. Mom invited me to join them, but after the hell of the whole money situation I just looked at her and shook my head mutely and sat in her recliner instead. When they got back from dinner, Lori said the food had been great, but my mom made a horrible face and said it was terrible. It was chicken fajitas. Dereck and I like to joke that my mother doesn't like food with flavor. She complains about things being spicy all the time, when assuredly, they are NOT spicy. I've seen the menu: They have veal piccata on the menu and Beef Wellington, salmon, leg of lamb. These are daily and weekly lunch options. It would have cost me $11 to join them for one meal. If she decides the food is horrible, it's her loss.

But she actually seemed pretty cheery because she had nabbed an apple and an orange. She cheerily offered to go get us some if we wanted, and it struck me that she already feels comfortable there. We had to leave to relieve the neighbors, and Lori had to go get her kids, so the three of us left at once. Burke and Mark had come down for a final load in the truck, so we knew they'd be back. But she didn't seem upset that we were leaving her all alone.

I went back, though, and wrote down phone numbers for her. Then, I ran into a resident in the hallway and asked him to go introduce himself. I took him down to her room and left them chatting.

Burke called here last night by accident, trying to make sure Ann had gotten home ok (and he was EXHAUSTED yesterday-- still the good brother taking care of his flock though). He said she had been angry about her meds when he left. He said, "Lori totally feels for you. It took her one day. 'NOTHING makes that woman happy!'"

I hate to say I told you so... No, I don't. I told you so.

I reckon we have to go back up there today, or at least one of us does, to take forgotten items or make sure her paintings and TV get hung and mounted. However, I think from now on either Matt or I should always be here. I need to mention that to him today, see what he thinks.

For now, I don't know what to do about a phone. She needs me to dial the number for her every time she makes a call, and they are willing to bring cordless phones to the residents. If they are going to have to dial the number all the time, she might as well use their phone. But we'll see. We don't have to do it all in one day.

I know this is going to seem bizarre, but some of you told me this would happen: Last night, I sort of missed her a little bit. I mean, it's certainly not boring with her around. And I felt a little deflated that this is done, exhausted by how quickly we made it happen, and sad about all of the circumstances leading to it-- her dementia and deterioration, and my father's looming death.

Heather and two of Matt's kids are coming tomorrow. It's just so much easier to get to Utah from Colorado than Missouri. I adore all of them, so I am excited. Heather lost her father a few years ago now. I still remember it like it was yesterday. She also used to work as a certified nurse's aide in a nursing home. I woke up in the middle of the night the other night and thought, "My dad is going to die while Heather is here." But maybe I just hope that she and her experience with the nursing home will be here to hold my hand physically and emotionally. Matt and I can do it-- but it's nice to have a guide.

Entering the home stretch

Today, my beloved puppy, Minnesota, threw up at home, and then passed blood in the kitchen. He is at the vet now, and they are not sure what is wrong. I'm hoping that it's curable.

Earlier today, a volunteer arrived and Matt and I got a brief break. We went and got some food at Wendys and then walked around for a bit, just kind of shell-shocked. We packed dishes for the kitchen, prepared paintings to be moved, and bickered back and forth with Pat. She figured that she needed a new bed, new chairs, a large couch for a small space, and she was absolutely living when I put my foot down and said NO. Matt got her a television yesterday at Costco that she will never be able to use and never watch, but maybe it's a small price to pay for just getting her out. But she has a $2K bed that she doesn't like because my dad researched and picked it out. It is a full-size, not queen, and it will fit, and it will be better for her myriad health problems, including her back pain. That is why my dad got it for her. She wanted a cheap Costco trundle bed and mattress. She likes to explain things to people.

"Well, I liked it for its frame. And this way, Ann (her sister) can sleep in it when she comes to visit."

"But a mattress is the most important thing about the bed. This isn't going to be good for your health, and you have to sleep in it all the time. Ann may come and sleep over one night a year."

We did that dance for awhile. When Matt and I got back from our respite, I took Pat to her hair appointment. I dropped her off, then ran to Subway and got her lunch. Then, I went to Bath and Body and got her some pretty soaps for her bathroom and some foot cream for my dad's dry feet. I got back to the salon, and she had convinced the stylist to cut her fingernails, then remove her old polish, then replace it. The woman didn't charge her, but I slipped her a tip on the way out.

I had the distinct privilege of sitting in a chair in a beauty salon and listening to my mother talk about what horrible people we are. Every once in awhile when she would say something truly bizarre "They only gave me one day to get out," "They say I have to be out tonight," I would pipe up, "You know, I can hear everything you're saying, right?"

Then she pressed me for what Matt and I had done. I told her, and so then the story turned into, "I got up at 5am to start packing as fast as I could because they want me out, and they went out and had a good time and left me to do all the work."

Yeah, walking around with Wendy's. We sure know how to have a good time.

We got home and she started in on all of her various complaints while Matt and I packed her knickknacks, four suitcases of clothes, many with the tags still on, a couple more boxes of clothes, then boxes of the contents of her drawers. There is no way this will all fit. No way. But sorting through it over the next few days should keep her busy for awhile.

This afternoon, Matt had to go up to Sunrise for last paperwork, and Burke and Lori (my uncle and aunt) came down from Draper, and my aunt Ann came up from Manti. Lori and Ann immediately swooped my mom away, but not before I stood up and swept my arm widely in front of me and said, "She is taking the bed downstairs. She can take any furniture in this house, but we are not buying her another piece of furniture!" And then I shook my finger in Burke's face and said, "And you're not buying her a bed!" And then I stormed out of the house with my coat to smoke a cigarette.

Burke came out and talked to me and we took a walk and talked and talked and talked. When Matt got back, we all took a drive (because otherwise, Pat interrupted us every five seconds by saying, "Not everything they say is true,") and discussed whether we should postpone the nursing home in favor of putting her in a detox unit. She is on a lot of medications. For years, Matt and I wondered whether it was the medications causing her dementia. Lori is convinced that Pat is mentally ill, but not that she has dementia or alzheimer's. We explained that we too thought for years that it was the medications, but we and the medical professionals are convinced that it's dementia. I told Burke, "This feels like hell, putting her in a nursing home, but detox just seems like it would be cruel."

Matt put it more cogently: "I am afraid it might kill her, and I'm not willing to do it just to satisfy my curiosity."

We decided to call her docs tomorrow and ask that they prescribe a regimen that will wean her down slowly, and we will see if there are any changes.

For years, Matt and I both wondered whether she would be different off the medications. But she won't be. And I actually came around to the idea of detox-- Burke said they would take her in a matter of hours-- but we decided to try the assisted living first. They make it sound like they are doing us a favor by not engaging us in a longterm contract, but it is really to protect THEM. Burke and Matt and I are all a little afraid they'll kick her out. But surely she isn't the worst they have ever seen. Right? And she is more of a pill hoarder than a pill popper. She doesn't like how she feels if she mistakenly takes Hydrocodone twice in five minutes, and we threw out 5 or 6 full bottles of it when my dad had his triple bypass. So, that suggests that she isn't taking them so much as keeping them. It's a security thing. Also, she breaks them in half. Matt and I both know people who have been pill poppers, and there is no such thing as breaking them in half or stopping at 2. So, she may not actually even need detox. I was going three days between fentanyl patches the three weeks we were out here for the heart surgery, and she didn't even notice most of the time. She didn't shake or sweat or puke either.

Burke and Lori offered to take Pat tonight to spend the night at their house. They loaded the back of Burke's truck with the suitcases, some of the boxes, the bed. My uncle Mark will come by with his truck tomorrow and we'll load up other furniture, other boxes, the paintings, small tables, dresser, nightstand. But Burke also volunteered them to move her in and unpack her because she is so angry at Matt and me right now. We accepted. We will end up going up there tomorrow, but may not have to have the long day we anticipated. Which is good, because as it is, we will have to find someone to come and stay with Dad.

Dad had some blood drawn yesterday. The nurse called today and said the meds they were giving him to bring down the swelling in his abdomen had spiked his potassium to critical levels, so we had to throw that medication out, start him on a new one, and "Watch him, because he could have a heart attack."

Matt and I had been wondering why he wasn't losing weight with his lack of food the past two months or so. Last night, I noticed that except for his torso, which is still distended, he has SHRUNK. In other words, he is starting to waste away from the cancer. He is just starting to have some trouble with incontinence, which horrifies him and puts him in a foul temper. I can't say I blame him.

Burke and Lori finally got Mom out the door, and I went back to sit with my dad and he said, "She didn't come back to say goodbye."

Burke and I had talked about that and decided that she should come down next week so we didn't have to do a final goodbye tonight on top of everything else. I asked my dad what he was thinking about. Matt put up a wall of family pictures on the wall in front of my dad's hospital bed, and often when we are sitting in there, we just sit and stare at them. I wonder if I will ever be able to look at any of these pictures again after this. My dad told me, "I am just wondering how this went so terribly wrong. How did they miss it for so long? How did I miss it? Did I even ever have a chance?"

A week ago, when I wasn't so exhausted, that would have tormented me. Now, all I can do is just nod sadly. It really goes back to when doctors put 7 stents in his heart. That led to him needing a triple bypass. That led to his cancer going unidentified and untreated until his finger required a partial amputation and he had 40 lymph nodes removed, all riddled with cancer. Mistakes were definitely made. But what I return to again and again is this: None of us get out alive. I once read a Raymond Carver story about a death being traced back to a pitcher of lemonade being made. If only that hadn't happen, none of the other events would have occurred, and that person would still be alive (a car accident? I don't remember all the details now). I can understand why my dad is thinking about it, though. He doesn't want to die. And he hears my mother running around all day talking about how she wishes she were dead.

Last night, when I was having my pity party for one, the doorbell rang. It was the guy who painted their condo. Twice. Because she didn't like the color. He got to know my dad pretty well, and he was shocked and devastated, so he came over at 9pm. My dad actually got up and hung out with him for awhile. Then the doorbell rang again, and it was the drug fairy with a cream to put under my dad's arms on his lesions, because it's red and sore looking. He can't feel it, though, because another side effect of his surgery is numbness. I rubbed the cream all over his lesions, and it wasn't as bad as I thought. I also removed his socks and rubbed the Bath and Body stuff on his feet.

Up until Monday morning, when he had his first bout with incontinence, I really thought that maybe the doctors were all wrong about how long he had. But Matt and I both think he is in the home stretch now. I cheated and read the Hospice handbook on what to look for at the end. The incontinence is a bad sign. The wasting is a bad sign. The potassium is a *really* bad sign. But we didn't really expect it to get anything else but worse.

Right now, though, he is sitting on the couch and he and Matt are watching the Jazz basketball game. I have a glass of Riesling next to me. Pat is gone, and the house is quiet. I can already see what people have meant, though, about missing the crazy. I think you just get hooked on the constand release of endorphins that accompanies situations of high stress. I almost feel guilty now, like with her gone, it's going to be *too* easy.

But I'll get over it.