Saturday, January 29, 2011

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.

Friday, January 28, 2011

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.

Wednesday, January 26, 2011

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.

Tuesday, January 25, 2011

Terra Firma

I'm so sad tonight. Everyone is in bed except me, and I'm sad and lonely. Talking on the phone is hard because nobody can hear me. The smoke from the garage is eeking into the house, so that's hard too.

My brother has been having these hour-long conversations with my dad. Twice yesterday. But when I go in to sit with him, I struggle to make conversation-- and he doesn't make it at all. I'm not really sure why, but right now it just makes me sadder. All my dad has seen since I've been out here is a strung-out daughter who is completely frustrated with his wife and not making a very peaceful environment.

When I talk to my younger two kids on the phone, it's so hard. They are begging me to come back. It's not even because they miss me-- they just aren't happy at their dad's right now. Part of that is because Tommy is failing two classes and dealing with some consequences that, frankly, their dad is better at meting out than I am. I tied myself up in knots for a bit after we talked and looked at flight information. I debated flying home next week when Heather comes out. I debated flying them out here for a week-- but the cost and the logistics and the missed school are just horrible. And then they have to go back. Same if I go home: The logistics and price are horrible. I am needed at home, but I am more needed out here. I know the kids are safe. I do not know the same about here.

I have decided that in spite of their suffering, I have to stay focused and stay the course. It sucks and it's shitty for just everybody. My mom is getting kicked out of her home, my dad is going to die, my brother and I are going nuts and we are losing two parents at once. Well, in some ways, we lost her years ago. And yet, she is still here, haunting us.

I feel like my mom is the One Ring. Matt and I take turns being Sam and Froto. We are heading to Mordor, and even though others would like to help, we have to go through this hell by ourselves. And I was saying to my friend John earlier that it's not like "Yay, woo hoo!" is going to happen when our mother leaves, because, hey, guess what? Dad is still going to die. And it's going to suck and be horrible. And we are going to have to continue to deal with phone calls from the nursing home, getting her doctors figured out, unpacking her and getting her set up, and the inevitable interference of well-meaning others who have no idea what we are going through and love to offer their two cents.

My friend Chris sent me a text that helps me a lot:
First he said, "I'm sure yr livid for lots of reasons. Wt gain is to be expected. It will fall off. Don't be mad at yourself just because you're an easy target. Things WILL get better."

Then he wrote later, "Did my feedback about winter/stress/isolation help any? It's ok to be livid-- just don't go looking for reasons to be down on yourself. You're in a state of flux. There is no terra firma for you until WAY after this ordeal is over.

"It would be awful to wish this would be over sooner, but part of you does [and that is true]. It's unavoidable but it's not wholehearted. There's a chained dog in your mind. He's trod down everything that can grow within the radius of his leash and he barks madly at every passing creature. We'll let the dog off the leash when you get home. There'll be grass underfoot and rabbits to chase. Promise." 
Promise?

Lists made at 3:00 a.m. or How to Put Your Mother into an Assisted Living Facility

How to Put Your Mother into a Nursing Home


Friday night
  1. Lie awake until 3:00 a.m., intermittently crying and smoking cigarettes in the garage with the baby monitor on so you can hear your dad when he calls you.
  2. Feel like you are the most terrible person in the world for ripping a helpless old lady from her home, her possessions, and her dying husband.
  3. Give up sleeping and start making lists of everything you think she will need in her new home to feel at home.
Hair done Thursday a.m. to see Mandi? (No, because Mandi is going to Hawaii Thursday. Go, Mandi!)
phone line
cell phones for seniors?
Ensure
diet coke for Mom's fridge
dreamsicles-- stock for awhile
cereal
vanilla soy milk
snacks
plates
glasses
mugs
silverware
napkins
eye drops (systane)
makeup
brush
microwave?
little bistro type table and chairs for eating?
What bed for Mom-- new mattress?
Nightstand, bureau
The Bose?
CDs
DVD player
DVDs
Sound of Music?
birth certificate
wedding photos
dishwashing liquid
dishtowels
bathroom towels
extra sheets, comforter, her favorite pillows
afghans
nightlight
lamps
sleep apnea machine
bathrobe (wash blue)
Clothing: blouses, t's, sweatshirts, sweaters, socks, slippers, garments, jammies, shoes, coat, hat, scarf, gloves
paintings
little cozy side tables
warm objects-- fairy statues?
fake plants plus real?
ice packs for her back
living room/family room chairs
sofa?
window treatments-- she should choose
ask about paint (no)
Rugs
washcloths
shampoo
conditioner
deodorant
nice bathroom soaps from Bath and Body that smell really good
pen and paper
art supplies
bookshelf and books
pictures
addresses and phone numbers
envelopes (fill out some envelopes)
stamps
camera?
love seat? How to make it a cozy studio. Look online for suggestions, including canopy around bed?
NOT A FAN OF SUNLIGHT
cane, just in case
shower chair
jewelry-- will it be safe?

Make lists of other things you're going to have to do:
  1. cemetery plots
  2. casket
  3. obituary?
  4. how do we book somewhere for funeral reception?
  5. car titles
  6. start going through everything in the house
  7. give people Mom's new address and phone number
  8. death announcements? How on earth is this done?
  9. let drs know and Pat change of address. can she keep her doctors? (yes) Burke?
  10. Maud-- set up other weekly lunch dates
  11. Mom checking account?
Saturday

The Longest Day

Sunday

She goes with brother for the day, so you get a break and feel human for a millisecond

Monday

  1. Take her to see her family physician to have paper work legally declaring her to be incapacitated.
  2. Listen to abuse at the drs office while trying to talk to the nurses about what else the Dr needs to fill out forms for nursing home. Abuse includes: "You planned this didn't you? You knew this was going to happen. Dr. M___ doesn't know anything. I am only going to him because my old doctor retired. He really knew and understood me. Why do you hate me? You just can't wait to get rid of me. I hope someday your daughter does this to you! [note: I do not have a daughter] How would you feel if somebody did this to you? So, you're never going to come and see me again, right? I'll be all alone. I can't be ready to leave by Thursday. I need two more days. I need to say goodbye to people. Nobody will ever come and see me. I need another week. I need to stay until after my dentist appointment [note: still an eye appointment]. I don't like you very much. You and Matt just want to get rid of me. IT'S MY HOUSE! You can't just kick me out of my house? [see: Melchezidek Priesthood quote]. I need to call my cousin. I need to call my sister-in-law. There is no way I can get everything done by Thursday. I.AM.EXHAUSTED. I am not going on Thursday. I need a few more days. Can I have a few more days? I promise I won't talk to you. I'll go stay with my cousin. I am going to call my cousin and she will let me stay with her for a couple of days while I am packing. It's the size of the apartment your dad and I first lived in in Ohio. I can't live in that small of a place. I don't like the big windows. There are so many old people at that nursing home. Connie's husband died last month and she still lives at home. I am going to stay at home IN MY HOUSE."
"You planned this didn't you? You knew this was going to happen. Dr. M___ doesn't know anything. I am only going to him because my old doctor retired. He really knew and understood me. Why do you hate me? You just can't wait to get rid of me. I hope someday your daughter does this to you! [note: I do not have a daughter] How would you feel if somebody did this to you? So, you're never going to come and see me again, right? I'll be all alone. I can't be ready to leave by Thursday. I need two more days. I need to say goodbye to people. Nobody will ever come and see me. I need another week. I need to stay until after my dentist appointment [note: still an eye appointment]. I don't like you very much. You and Matt just want to get rid of me. IT'S MY HOUSE! You can't just kick me out of my house? [see: Melchezidek Priesthood quote]. I need to call my cousin. I need to call my sister-in-law. There is no way I can get everything done by Thursday. I.AM.EXHAUSTED. I am not going on Thursday. I need a few more days. Can I have a few more days? I promise I won't talk to you. I'll go stay with my cousin. I am going to call my cousin and she will let me stay with her for a couple of days while I am packing. It's the size of the apartment your dad and I first lived in in Ohio. I can't live in that small of a place. I don't like the big windows. There are so many old people at that nursing home. Connie's husband died last month and she still lives at home. I am going to stay at home IN MY HOUSE."

"You planned this didn't you? You knew this was going to happen. Dr. M___ doesn't know anything. I am only going to him because my old doctor retired. He really knew and understood me. Why do you hate me? You just can't wait to get rid of me. I hope someday your daughter does this to you! [note: I do not have a daughter] How would you feel if somebody did this to you? So, you're never going to come and see me again, right? I'll be all alone. I can't be ready to leave by Thursday. I need two more days. I need to say goodbye to people. Nobody will ever come and see me. I need another week. I need to stay until after my dentist appointment [note: still an eye appointment]. I don't like you very much. You and Matt just want to get rid of me. IT'S MY HOUSE! You can't just kick me out of my house? [see: Melchezidek Priesthood quote]. I need to call my cousin. I need to call my sister-in-law. There is no way I can get everything done by Thursday. I.AM.EXHAUSTED. I am not going on Thursday. I need a few more days. Can I have a few more days? I promise I won't talk to you. I'll go stay with my cousin. I am going to call my cousin and she will let me stay with her for a couple of days while I am packing. It's the size of the apartment your dad and I first lived in in Ohio. I can't live in that small of a place. I don't like the big windows. There are so many old people at that nursing home. Connie's husband died last month and she still lives at home. I am going to stay at home IN MY HOUSE."
 
"You planned this didn't you? You knew this was going to happen. Dr. M___ doesn't know anything. I am only going to him because my old doctor retired. He really knew and understood me. Why do you hate me? You just can't wait to get rid of me. I hope someday your daughter does this to you! [note: I do not have a daughter] How would you feel if somebody did this to you? So, you're never going to come and see me again, right? I'll be all alone. I can't be ready to leave by Thursday. I need two more days. I need to say goodbye to people. Nobody will ever come and see me. I need another week. I need to stay until after my dentist appointment [note: still an eye appointment]. I don't like you very much. You and Matt just want to get rid of me. IT'S MY HOUSE! You can't just kick me out of my house? [see: Melchezidek Priesthood quote]. I need to call my cousin. I need to call my sister-in-law. There is no way I can get everything done by Thursday. I.AM.EXHAUSTED. I am not going on Thursday. I need a few more days. Can I have a few more days? I promise I won't talk to you. I'll go stay with my cousin. I am going to call my cousin and she will let me stay with her for a couple of days while I am packing. It's the size of the apartment your dad and I first lived in in Ohio. I can't live in that small of a place. I don't like the big windows. There are so many old people at that nursing home. Connie's husband died last month and she still lives at home. I am going to stay at home IN MY HOUSE."

"You planned this didn't you? You knew this was going to happen. Dr. M___ doesn't know anything. I am only going to him because my old doctor retired. He really knew and understood me. Why do you hate me? You just can't wait to get rid of me. I hope someday your daughter does this to you! [note: I do not have a daughter] How would you feel if somebody did this to you? So, you're never going to come and see me again, right? I'll be all alone. I can't be ready to leave by Thursday. I need two more days. I need to say goodbye to people. Nobody will ever come and see me. I need another week. I need to stay until after my dentist appointment [note: still an eye appointment]. I don't like you very much. You and Matt just want to get rid of me. IT'S MY HOUSE! You can't just kick me out of my house? [see: Melchezidek Priesthood quote]. I need to call my cousin. I need to call my sister-in-law. There is no way I can get everything done by Thursday. I.AM.EXHAUSTED. I am not going on Thursday. I need a few more days. Can I have a few more days? I promise I won't talk to you. I'll go stay with my cousin. I am going to call my cousin and she will let me stay with her for a couple of days while I am packing. It's the size of the apartment your dad and I first lived in in Ohio. I can't live in that small of a place. I don't like the big windows. There are so many old people at that nursing home. Connie's husband died last month and she still lives at home. I am going to stay at home IN MY HOUSE."
 
"You planned this didn't you? You knew this was going to happen. Dr. M___ doesn't know anything. I am only going to him because my old doctor retired. He really knew and understood me. Why do you hate me? You just can't wait to get rid of me. I hope someday your daughter does this to you! [note: I do not have a daughter] How would you feel if somebody did this to you? So, you're never going to come and see me again, right? I'll be all alone. I can't be ready to leave by Thursday. I need two more days. I need to say goodbye to people. Nobody will ever come and see me. I need another week. I need to stay until after my dentist appointment [note: still an eye appointment]. I don't like you very much. You and Matt just want to get rid of me. IT'S MY HOUSE! You can't just kick me out of my house? [see: Melchezidek Priesthood quote]. I need to call my cousin. I need to call my sister-in-law. There is no way I can get everything done by Thursday. I.AM.EXHAUSTED. I am not going on Thursday. I need a few more days. Can I have a few more days? I promise I won't talk to you. I'll go stay with my cousin. I am going to call my cousin and she will let me stay with her for a couple of days while I am packing. It's the size of the apartment your dad and I first lived in in Ohio. I can't live in that small of a place. I don't like the big windows. There are so many old people at that nursing home. Connie's husband died last month and she still lives at home. I am going to stay at home IN MY HOUSE."
 
"You planned this didn't you? You knew this was going to happen. Dr. M___ doesn't know anything. I am only going to him because my old doctor retired. He really knew and understood me. Why do you hate me? You just can't wait to get rid of me. I hope someday your daughter does this to you! [note: I do not have a daughter] How would you feel if somebody did this to you? So, you're never going to come and see me again, right? I'll be all alone. I can't be ready to leave by Thursday. I need two more days. I need to say goodbye to people. Nobody will ever come and see me. I need another week. I need to stay until after my dentist appointment [note: still an eye appointment]. I don't like you very much. You and Matt just want to get rid of me. IT'S MY HOUSE! You can't just kick me out of my house? [see: Melchezidek Priesthood quote]. I need to call my cousin. I need to call my sister-in-law. There is no way I can get everything done by Thursday. I.AM.EXHAUSTED. I am not going on Thursday. I need a few more days. Can I have a few more days? I promise I won't talk to you. I'll go stay with my cousin. I am going to call my cousin and she will let me stay with her for a couple of days while I am packing. It's the size of the apartment your dad and I first lived in in Ohio. I can't live in that small of a place. I don't like the big windows. There are so many old people at that nursing home. Connie's husband died last month and she still lives at home. I am going to stay at home IN MY HOUSE."
 
"You planned this didn't you? You knew this was going to happen. Dr. M___ doesn't know anything. I am only going to him because my old doctor retired. He really knew and understood me. Why do you hate me? You just can't wait to get rid of me. I hope someday your daughter does this to you! [note: I do not have a daughter] How would you feel if somebody did this to you? So, you're never going to come and see me again, right? I'll be all alone. I can't be ready to leave by Thursday. I need two more days. I need to say goodbye to people. Nobody will ever come and see me. I need another week. I need to stay until after my dentist appointment [note: still an eye appointment]. I don't like you very much. You and Matt just want to get rid of me. IT'S MY HOUSE! You can't just kick me out of my house? [see: Melchezidek Priesthood quote]. I need to call my cousin. I need to call my sister-in-law. There is no way I can get everything done by Thursday. I.AM.EXHAUSTED. I am not going on Thursday. I need a few more days. Can I have a few more days? I promise I won't talk to you. I'll go stay with my cousin. I am going to call my cousin and she will let me stay with her for a couple of days while I am packing. It's the size of the apartment your dad and I first lived in in Ohio. I can't live in that small of a place. I don't like the big windows. There are so many old people at that nursing home. Connie's husband died last month and she still lives at home. I am going to stay at home IN MY HOUSE."

3. Your mother finally goes to bed, and by that time, you feel like you've been punched in the face.

4. Tell your brother that you are going to take her back to Missouri and put her in the cheapest, shittiest nursing home you can find.

5. Brother will tell you that you should probably go to bed.

6. Go to bed at 9pm

Tuesday

  1. Get up at 5am and fill out all of the remaining nursing home paperwork.
  2. Go back to sleep, and sleep right through your dad walking past you in the living room and getting himself a bowl of cereal.
  3. 8am, the Hospice nurse calls. She had an emergency in Salt Lake, so she is going to see her other SLC clients. She will be here early afternoon.
  4. 9am Your brother will attempt to leave the house to go to Costco to buy mom a new TV and fill her prescription for valium.
  5. Your mother will go to the bathroom a million times because she is constipated, all the while continuing: "You planned this didn't you? You knew this was going to happen. Dr. M___ doesn't know anything. I am only going to him because my old doctor retired. He really knew and understood me. Why do you hate me? You just can't wait to get rid of me. I hope someday your daughter does this to you! [note: I do not have a daughter] How would you feel if somebody did this to you? So, you're never going to come and see me again, right? I'll be all alone. I can't be ready to leave by Thursday. I need two more days. I need to say goodbye to people. Nobody will ever come and see me. I need another week. I need to stay until after my dentist appointment [note: still an eye appointment]. I don't like you very much. You and Matt just want to get rid of me. IT'S MY HOUSE! You can't just kick me out of my house? [see: Melchezidek Priesthood quote]. I need to call my cousin. I need to call my sister-in-law. There is no way I can get everything done by Thursday. I.AM.EXHAUSTED. I am not going on Thursday. I need a few more days. Can I have a few more days? I promise I won't talk to you. I'll go stay with my cousin. I am going to call my cousin and she will let me stay with her for a couple of days while I am packing. It's the size of the apartment your dad and I first lived in in Ohio. I can't live in that small of a place. I don't like the big windows. There are so many old people at that nursing home. Connie's husband died last month and she still lives at home. I am going to stay at home IN MY HOUSE."

    6. You suggest Costco another day.
  6. 7. They finally leave for the store.
  7. You go in to talk to your father.
  8. The door bell rings, and it's the CNA to help your dad shower and put on clean clothes and shave.
  9. Do some laundry and chat with CNA.
  10. Your father feels clean and takes a nap.
  11. Your brother and your mother come home, and your brother looks like he has been punched in the face.
  12. They have a 32" wall-mount, flat-screen, HD TV that she will never ever ever ever be able to turn on, let alone use the remote control.
  13. Suggest that your mother have a valium. "I can't take one. I have to pack as fast as I can because you want me out of here."
  14. Hide a valium in some baby food peaches. Add laxative.
  15. Complete and sign remaining hospice papers with your brother. It's snowing cats and dogs so you call and say you are not going to drive in that. Decide to fax papers.
  16. Your brother leaves to fax the papers and do a little grocery shopping.
  17. Confiscate her valium bottle.
  18. Your
  19. Listen to three-hour barrage about how dare you take her medicine! That is HER medicine!
  20. Give her another valium at the start of the barrage, and hope she will take a nap.
  21. Get her to lie down and rub her back. Continue to listen to barrage.
  22. Watch her try on every single pair of pants she has. Put the ones she doesn't want in a bag for Deseret Industries.
  23. Ask her to lie down again.
  24. Listen to barrage. She will get up and try to go to the bathroom. Every time you think she is finally asleep, she opens her mouth to say, "I need more time. I can't be out of here Thursday. I need to call my cousin. Why do you hate me so much? I can't believe I'm being kicked out of my own house."
  25. Get out of bed and leave the bedroom.
  26. Pull hair out.
  27. Dial aunt's number and listen to Mom berate you to her on the phone. On YOUR phone.
  28. Start videotaping her with your computer just to amuse yourself.
  29. There is a knock at the door and it's the Hospice social worker. She distracts Mom for a couple of hours and reinforces what we have told her.
  30. Put every single item of clothing she has that you can find into suitcases without letting her look at them again.
  31. Your father gets out of bed to watch ESPN. You suggest a cup of tea to your mother.
  32. Your mother finally falls asleep in the recliner for about ten minutes.
 


Monday, January 24, 2011

Overheard

Pat: "Tom, I'm leaving. In two days."

Tom: "Well, who cares? I'm doing the big sleep. I'm going back to bed."

That, my friends, pretty much sums it up.
I don't think I can update today. I spent the day with my mother. I took her to the doctor to get papers saying she is incapacitated and to get her into the nursing home. Then we went up to the nursing home for an intake interview and took measurements.

To say that she is furious and lashing out is an understatement.

See The Longest Day. Redux.
"Who says you can tell me I have to move out of my own house?"

"I dunno. I guess it's the Holy Melchizedek Priesthood vested in me."

Saturday, January 22, 2011

The Longest Day

It is getting harder to update. This is mostly because I am exhausted, and reliving it all seems to just exhaust me a little bit more, but maybe if I can write a bit, I can fill in the gaps later. Or maybe I won't want to. I am torn between feeling a personal responsibility as a writer to document this and a personal responsibility as a person to rest.

Yesterday was a long day. Matt and I rode up to Sandy, UT to tour another assisted living facility. It was beautiful. The woman who gave us the tour was sharp, responsible, compassionate, warm, and reassuring. Everyone we met was happy, calm, and like the Hospice people, just the nicest people you'll ever meet. The people who live there seemed engaged and happy, not just staring into space. They were participating in a social gathering that seemed like something that my mom could also participate in. It smelled good throughout-- like potpourri. I loathe the way assisted living facilities smell, but I couldn't get over how good this one smelled.

By the time we had seen their apartments with the view of the charming little courtyard, I was sold. Matt and I didn't even have to talk about it privately-- we wrote them a check for the move in fee. Our plans have gone back and forth though, back and forth. We talked to my aunt about my mom going up to Idaho, and one minute Pat says yes, the next she says no. She asks every single person who walks into the house where they got their shoes, are they comfortable? Do you love them? Two weeks ago, she convinced her sister Ann to give her literally the shoes off her feet. Then, today, when Ann was up visiting and wearing her old tennis shoes, Pat asked her if she had new shoes. I was afraid she would take those too. Pat decided the other day she liked my dad's friend John's size 10 (Men's) crocs. So, I got her a pair of crocs, but no, John's were particularly comfortable. I was honestly surprised she didn't convince him to give her his shoes, which are particularly the wrong size for her.

Last night, I sat down with her with whoever was here-- honestly, I'd have to think about it. Who was here? Ah, it was my dad and his former graduate student Didi. I showed her the information from Sunrise, read out loud, got out my computer to show her pictures. She leaned back against the couch and said she was too tired to look at them right then.

That is usually her solution for avoiding things. She tells people she has about six books going at a time, but she is too tired to read, or she has something in her eye. I remember when I taught at the junior high. I had a student who was special needs (I taught special ed). When I would ask him to sort alphabet cards into the correct order, he would bend forward, clutch his stomach, and tell me he was sick and had to go see the nurse.

After we had written the deposit for Sunrise, the adrenalin that had been buoying us through the week just evaporated and we both felt exhausted. I forget that my brother has had a stroke sometimes-- he shouldn't really even be driving, but he has been. We stopped at Costco on the way home, and he felt so lightheaded in the store that he thought he might pass out. He asked me to drive, and then at a stoplight, I forgot that left turns don't have the right of way and almost got taken out by a truck.

We got home exhausted. My dad had requested a hamburger though, so for the first time all week, he sat up in the living room and ate a burger. This is really great, because it's the most appetite he's had all week. He has also had some chicken dinners, but then sometimes he just wants pudding or yogurt.

I checked my email and learned that Tommy has shut down this week. He has stopped turning in math homework, has refused to make up late work, and his teacher was worried that he would fail. I went downstairs and told Matt and started bawling as I was telling him, and then went out to the garage and called The Dom (my next door neighbor, running partner extraordinaire, licensed counselor) and sobbed about Tommy's math grade on the phone and worried that I needed to come home to deal with it, but I didn't want to choose between my dad and seventh grade math. Tommy has been having trouble in math all year, but apparently this week it's gotten worse. Carol talked me off my ledge and told me that Tommy is going to have to step up, and so I called him and told him that later. I have explained to my kids that if I'm not out here, Grandpa doesn't get to stay at home. Matt can't do this alone. The two of us cannot take care of the two of them, and I am worried enough about Matt. Last night I seriously debated taking him to the emergency  room. Fortunately, he went to bed early.

 I did too, and my dad has started being all sneaky and not wanting to wake me at night when he gets up to go to the bathroom. But the monitor is up so high that I hear the bed creak and go to him. He had a dream last night about Leonardo DiCaprio converting to Judaism. He didn't get up that many times-- four? And really, I just like to get up to make sure he doesn't fall. But apparently, when Matt came up at 8:20a.m., I didn't look so good because he told me to go downstairs and sleep, which I did until almost noon.

I got up feeling rested, and thank God I got the extra sleep, or I don't know how I would have gotten through this day. Today, I did not shower. In fact, despite the people coming and going all day, I didn't even get out of my pajamas. I just put on a bra. My hair is still sort of half sticking up. First thing, I learned that my brother had had a long morning:

  1. My mom decided she *wasn't* going to Susan's, so she and Matt talked about it until my dad finally called her in and told her that he doesn't want her there when he dies. I asked him about it briefly later and he said, "You and Matt cannot take care of both of us." And that is the truth.
  2. Last night, my dad started asking Matt and I when we were leaving and going back to work, and weren't we going to take turns being out there? The hospice doc had come the day before and told my dad that his father lived with melanoma for four years-- I can't even recall right now whether I've already said this. My dad started thinking that maybe that meant that he would live for four more years, or one more year, or whatever. This concerned us mostly because he and his friends have been talking about something all week I can't blog about here, and Matt and I were worried that my dad would spend his last few weeks focused on that issue. Your priorities are different when you think you have a lot of time. So, he started talking about that to Matt this morning, and Matt gently told him that the doctors don't think that's the case. They are saying two to three weeks. My dad still had a great day visiting with people, but I do think perhaps it sobered him up. And Matt felt terrible. It's so hard not to second guess ourselves with everything, but we're both pretty straight shooters. I told him that he just had to do what he thinks is right. We both do.

My mother's cousin picked her up to spend a little time together. Before my mom left, she asked Matt to get a large valise out of the closet. She came back from her cousin's later when their old friend Maud was here. Maud had known my parents since college, and she and her family also lived in Denver for awhile when we did, and told us stories about taking care of us when we were babies. I left Mom and Maud to chat in the TV room. I went into the living room and started looking through some family pictures Bonnie (the cousin) had given my mom. I heard Mom telling Maud that we were trying to kick her out of her house and take all of her money. She said, "You know, maybe I didn't really need to have those kids in my life."

Even when you know that it's the disease talking and not your mother, that is a terrible thing to overhear. She walked into the living room and I said, "Thanks, Mom. Thanks a lot."

"What?"

"I heard you tell Maud you think you didn't really need to have us in your life." And here is where I started to cry: "And I cannot imagine even thinking that about my kids, let alone saying it out loud."

Then she got mad and started to do her fake crying thing and said angrily that she LOVES me, and Maud came in and saw me crying and started crying and hugged me and said over and over, "It's not Pat, it's not Pat, she doesn't know what she's saying." And Pat was saying, "Am I not to be forgiven for this?"

Maud whispered, "You have to be strong for your dad," so I said I'd get up and wash my face. I got a towel in my parents' bathroom (my dad is in the guest room) and then I just lay down on their closet floor and cried into the towel. My mom followed me [of course she did] and so I told her that I forgive her and I'll be out in a minute. Maud came in a few minutes later and told me that I needed to come out of the closet (not in that way, but literally), so I washed my face and came out.

Maud asked me to walk her to the car, and she told me that my mom had told her that she took the will over to Bonnie's house, because she wanted them to take it to a lawyer. Then, Maud left and my aunt and uncle arrived to take my mom for a ride, and I walked down to the mailbox and back. I felt like I had been punched by the afternoon.

When my mom got back, she asked if Bonnie had come by the house again. She had, to bring a rotisserie chicken and some salad. She said, "Did Bonnie drop off any papers?" And I said, "What papers?"

"Oh, just some genealogy papers."

And that is when I realized that Bonnie still had the trust documents, which also have my dad's advanced directives in it. Um, we really need those papers. So, I called Bonnie's husband and asked if she could bring them back, but they could make copies if they wanted to, or we could make copies. Bonnie was out running errands with the will, but he told me he'd have her call.

Then, my mother started to spiral downward, telling her brother and sister that nobody loved her, she just wanted to die, we were trying to get rid of her, she was in trouble for taking the will to Bonnie's, and no matter what anybody said to her, she couldn't rest. I just sat in a chair in the living room for most of it, staring into space. I didn't have the energy to shower, change out of my pajamas, or do anything. So, then my mother called Bonnie's husband and told him that she had gotten into big trouble for taking the will, and that we had been going through her valise. Matt and I talked after she went to bed about how that must have sounded. "They went through my valise and discovered that the will, which is not even usually kept there, wasn't in there!" As if its absence had alerted us to its absence. I wouldn't really have even realized it was gone today if Maud hadn't tipped me off first, and then my mother asked about the "genealogy" papers.

Bonnie came back with the will, and Mom went running out the door saying, "I got into big trouble," and I just put my head down in my hands.

Writers are supposed to show and not tell. I have shown, or at least tried to, the sequence of the days' events. But I don't know how to possibly convey how stressful and exhausting it is. I feel like a character in a bad Lifetime TV movie, with my mother running around telling anybody who will listen that her children are conspiring against her, that she won't have anything, she is being turned out into the streets, that nobody loves her, and that she can live alone. She even told Maud that she has been driving. Maud asked me about it, and I said, "I don't see how that is possible. She doesn't even have keys to the cars." Not to mention the fact that she is still alive, and the cars are not wrecked.

I realize that I am almost as focused on my own suffering as my mother is on hers. I am not indifferent to her confusion, her grief, her terror. However, if I focus on it for too long, it will disable me. I am incapable of making a decision that will make her happy. For as long as I can remember, if I got her a gift, it was the wrong size, the wrong color, she wanted something different, but thanks. If I want to take her to Missouri with me, I am taking her from her family, friends, and support system. If I want her to live near her family, friends, and support system, then I am abandoning her, and I don't want her around because I won't take her to Missouri with me. If I get her socks, they are the wrong thickness, the wrong color, the wrong size. I have taken her clothes shopping several times over the years, brought things to her dressing room, had her try them on and insist on buying a ton of things. Then, the next day, she would try them on and model them for me (again) telling me that they didn't fit right. I have no idea what her criteria is at all, but then I'd have to take them back. I did this for several years before I finally caught on: If I go out to lunch with friends, I'm neglecting her because she never gets to see me. If I get her shoes, well, her heel slips out of them. The clothes don't fit. This color doesn't look good on her.

She is not going to be happy. She has a beautiful anniversary ring, and I was admiring it when she got it, and she said, "I don't really like it, because your dad picked it out."

I said, "My god, mom this is a beautiful ring."

"A lot of other women get bigger and more expensive ones."

My dad got a special order bed to accommodate her back. Now she says that she never liked it, but my dad did so he kept it, even though it was supposed to be for her.

She lives in a beautiful condo, but she has had it repainted and then not liked the color and had it painted again. She doesn't like the carpet or the drapes, and blinds are too mannish, and a lot of her friends have custom built houses.

At some point, I can't worry about what is or isn't going to make her happy. I have to worry about what is going to make her safe. And that's about all I can do.

Matt's friend Mindi sent us a lasagna dinner and salads and breadsticks for dinner. I ate salad, because on top of everything else, I feel so shitty about how I look. I don't like my hair short, but I can't make it grow faster. It's my natural color, but I'm used to being blonder, so I feel uncomfortable. I've put on a little weight this winter, and it's wearing on me. Yesterday morning I walked for an hour, the first half up as many hills as I could. I hurt my foot a bit running on Tuesday, so I decided I needed to walk instead. Today, I haven't worked out, but I want to go down and use my dad's exercise bike. But I have to weigh that against going to bed early enough not to be a zombie tomorrow after getting up tonight with my dad.

In the midst of our terrible afternoon, Matt and I talked. We think going up to Idaho and then coming back down is going to be too much more interruption in her routine and schedule. Not to mention stressful for my aunt and uncle. So, we called Sunrise and asked when we could get her in this week. Thursday. So, Thursday it is.

We are going to stop trying to be up front with her about it though. She tells us that she has to stay here for another month, because it will take several days to pack. She says she isn't going to leave her house and we can't make her. So, we started talking about other things and pretending she wasn't even talking until she stopped haranguing us. Fine-- if she can't handle being told the truth and having us be up front about things, then I guess we are just going to drive her up there on Thursday and move her in. That feels shitty and cruel to both of us, but we can't go on the way we are now.

If you are still reading, have you noticed how little I've spoken about my father? The person who is dying? The reason I am here? The person I would like to spend some time with, the person I would like to have some peace? Yeah, I noticed that too. Because she makes it impossible to focus on anything except her. She had a house full of adults surrounding her today and catering to her. My dad enjoyed visitors, and we heard his big belly laugh a lot, but I barely got to see or speak with him today.

Now that I've written all of this out, I don't feel like crying anymore, and I don't feel so much like I've been punched. In fact, I think, "Was it really that bad?"

Yes. It was.

Thursday, January 20, 2011

The Red Pill


"The first appearance of the concept of the "red pill" in the 1999 film The Matrix. A hacker named Morpheus offers a choice to the film's protagonist, Neo, to take the blue pill, where "the story ends, you wake up in your bed and believe whatever you want to believe", or to take the red pill, where "you stay in Wonderland, and I show you how deep the rabbit hole goes."
These days, I sleep on this foam, mattress top thing on the living room floor with a baby monitor on. My dad's room is only about ten feet away, but last night, the monitor was on too low, or I was too tired. I thought, drowsily, at one point that, wow, my dad was really sleeping well. Um. Apparently, he was a little freaked out when he called repeatedly and nobody came. I feel horrible, but he was able to get out of bed and take care of what he needed, so there is at least that. Right now, the monitor is turned on HIGH, and Matt has a monitor in his room too, in the basement, just in case.

Yesterday afternoon was a little discouraging. Matt and I went to look at our first nursing home. It is literally the road over from my parents' house. I could walk to it from here, but my mother probably could not (and should not). It's gorgeous-- our social worker, Nicole, described it as the Ritz Carlton of nursing homes, and I believe it. It's priced like one too.

The discouraging parts are these:
  1. We are still trying to determine exactly what benefits my mom will continue to receive. We think that nothing will change, but we don't know for sure, and nobody wants to assume in a situation like this. So, we can't make any definite decisions until we have those answers. My dad says she will be well taken care of, but can't really give us definite answers on this right now. Today, we got out practically every single scrap of financial information we could find anywhere and sorted through it with my dad's two best friends here, and none of us could really figure it out. So, we are making an appointment with his accountant. I now know why there are estate attorneys. They deliberately make this shit as confusing as possible so we have to pay them to figure it out.
  2. Remember the other day when I wrote that we'd have to have my mom legally declared in competent? Well, yeah, that is a thing that is going to happen. Today, the hospice physician evaluated her, and Monday her primary care physician will formally evaluate her. I don't understand why her regular doc can't just DO THIS FOR US, but everyone wants to cover their ass. We are going ahead and getting two physician's documents, just because two is better than one.
  3. After talking to the woman at the Ritz, it became clear that our mom needs more specific assisted living. Apparently, there are levels. Level one just means you occasionally need a hand and don't want to live alone. Level two is more what she needs: She needs 24-hour supervision. Physically, she is ambulatory, can take care of her own toileting and showering and dressing, but emotionally, well, I said today, "If it were ethical to remove her larynx, I would just move her in with me." It's so terrible that it boils down to the fact that one of her largest problems is she can't keep her mouth shut. Every day all day, the constant barrage of problems and complaints and major upsets over the dumbest shit in the world. I'll get to that. It's exhausting, as I've said ad nauseam, and it's also preventing us from taking care of some of this other stuff (tomorrow we get to buy cemetery plots! Whee!). Not to mention, it distracts us from our dad. Also, she constantly goes into his room bitching about something before we hear it on the monitor and shoo her out, which pisses her off excessively.
         So, Level two. This means lockdown. She will be in a unit that locks down so she can't leave. I called the social worker and said, "How do we do this? How do we put her in a nursing home when she is adamantly against this?"

        "First, you get the documents from the physician. Next, you and your brother have power of attorney. So, you take her kicking and screaming, and you leave her there. They deal with this all the time."

Wow. So, you can really do that to another human being. To your mother. Nicole went on to explain that *this* is not the abusive decision. The abusive decision is to allow a person who needs her kind of care to live unassisted. In fact, that is elder abuse/neglect. So, no matter how she views it, the nursing home is the responsible and caring decision. But it feels like we are sending her to hell. Ritz Carlton hell. Because of her broken mind's perceptions of institutionalization.

The woman at the nursing home worried me though, because she said our mom might get worse if she is surrounded by people with really severe dementia. That bothers me a lot. But I don't see her sitting in her apartments quietly like Helen, the lovely woman who let us tour her apartment. My mother cannot play Bingo. She cannot read a book or join a book club, though she told us she was recently made president of her book club. Matt cracked a joke about giving her sodium pentathol earlier today, and I said, "Yeah, that would shut her right up." We just look at each other in amazement at some of the lies she tells. It's just remarkable. She cannot play cards, and she cannot do crossword puzzles or needlework. She can complain. She needs a facility in which she can complain from the moment she wakes until she goes to bed.

But I'd been really hoping, before our visit, that assisted living might be the solution for her-- a lower level of it at least.

4. Lock down or not, nobody has availability right now. At least, none of the ones we've called and explored. They tell us that they typically have a 30 to 60 day waiting list. Which means, of course, that they think someone will die in that time. Wow, that is so depressing. Someone else has to lose someone they love, someone else's life has to end, before we can place our mother. And it's awful that they have people dying there at that rate. My dad's hospice physician told us today that ours was the best visit he could anticipate all day today. He had 8 more patients and 250 more miles to go.

After we went to the nursing home yesterday, we went to the doctor's office to try to pick up our document about our mother, and he wasn't in. This was before we found out he wants an appointment with her, too. I'm not a fan of this doctor anyway, because he told my dad the lesions growing under his arm were not cancer. How can somebody be that stupid? So, feeling discouraged, we decided to go to the mall for some retail therapy. We both ended up being too depressed even to buy anything more than an orange julius and a coffee, and Matt had both of those.

I had a good, hour long run on Tuesday evening, but nothing since then. I am trying not to eat much, but I worry that I'm going to gain weight, and that is making me depressed too. Every morning, though, I shower and put on makeup and earrings, because I have decided that if I stop changing out of my pajamas, if I stop putting on makeup (which is weird, because I almost never wear it at home, and here I have a full regimen), if I stop at least *trying* to respect myself, then I'm going to end up in a hole it will be very very difficult to pull myself out of. And as a primary caregiver right now, I can't let that happen. I go to bed earlier than I want, I don't eat food I want to eat, and I wear makeup. These are small things, but they seem to require great effort right now.

When we got home yesterday, Pat was very agitated. She is really starting to get easily upset as time goes on because her routine has been upended. And it will never be the same again. Never. Ever. Her entire life is changing, and it is very confusing, very frightening, and it just makes her cling more and more to what she deems important. She and my dad had eye appointments yesterday. Matt canceled them on Monday before my dad got back, because we didn't really have any idea at that point of what to expect. My mom carries around her 2011 desk calendar and asks us to read it to her. She keeps all of her appointments on it, which include, invariably, one doctor appointment and her weekly hair appointment. But she refuses to wear her glasses, so she can't see it. Because she obsesses over things, we didn't even mention the eye appointment to her. She started asking me if she had a dental appointment this month, and I truthfully told her she didn't. I suspected she meant eye appointment, but I knew if she didn't know she had one, she wouldn't be upset about missing it.

Well. When we were out yesterday afternoon, my dad remembered the appointments and asked her if she had missed it. Whoops. Mind like a steel trap, that guy. So, she started freaking out. Only, there is no phone number on the appointment, and only a last name, and we don't know if it's with an optometrist of opthamalogist-- well, Matt does because he rescheduled it. But yesterday when she was freaking out and grilling me about it, I didn't know any of this, and Matt was making phone calls in the basement. She kept insisting that she needed a new appointment. Then I found out she has one in two weeks. So, we told her that. She kept talking about how she had missed her dental appointment. My dad's two friends left and Matt cooked dinner, and my mom talked at me.

"I missed my dental appointment today, and I really need another one."

"It was an eye appointment. And we rescheduled it for two weeks."

"Well, why did you do that?"

"Because we didn't know if anybody would be able to take you."

"Well, So and So could have taken me."

"Who is that?"

"She lives down the street."

"Well, we did not know that, and we are sorry."

"Well, I missed my dental appointment, and it was very important. My teeth have been hurting for two days!"

"It was an eye appointment, and you have another one in two weeks."

"Thank god, because my tooth is killing me."

This continued until I really started to believe, despite not seeing any indication anywhere nor having heard prior to this about dental pain, that she may have had a dental appointment. I started to get really confused, and we had the above conversation three times in a row, at LEAST, while Matt was making enchiladas for dinner. By the end of it, I was laughing so hard I was CRYING, and she didn't seem to notice. Matt kept saying, "I don't know what the eye doctor is going to do about your teeth. Unless he is an eyetooth doctor. Maybe he has specialties in both areas, but instead of an ear, nose, and throat guy, he is an eye and teeth guy."

This morning, it was time to change her pain patch. She has it changed every two days. She wears fentanyl patches, and they come in a red package, at 75mg or something like that-- the number 75 is the important thing. However, two boxes of them are missing. They are supposed to be in a shoe box on her dresser, along with medical tape and scissors. There were only about 4 patches in the box, though, and she started to get very very upset. I kept trying to calm her down so we could change her patch before we found the others, and she kept leaving the room, trying to get my dad's friend to write her a prescription (he is an allergist), and he told her that he *can't*. I finally got the new patch on her, and found two boxes of the 50mg OLD patches. She insisted that my dad had wanted her to throw those out (so, why didn't you, Mom?), and that they were expired (they aren't). What they are is a lower dose, and she knows that. We still can't find the other patches. She said throughout this experience, "I'm so careful! I'm so careful with medicine. I never lose anything. Someone took the patches out of the box!"

And when we told her that it had to have been her, she got very angry. "Can't you give me the benefit of the doubt about this?" she asked. Frankly, no.

Matt had put her patch on her the other day, but today he came over and whispered, "I'll give you a hundred dollars if you put the patch on her."

I found out why when she pulled her pants down so I could put a patch onto her stomach. Honestly, if I see my mother's private parts one more time, I am going to be permanently scarred, I think. She keeps pulling her pants down on the way to the bathroom, and she pullst them down when we go into her room so I can massage her back (at least twice a day), and I always have to ask her to pull them back up. It's bad enough for me, but I think Matt might actually *be* scarred from it.

There were two other incidents, and one of them was my fault, but it was inadvertent. My brother administers our parents' pills-- he has them all organized and he lays my mother's out with her vitamins on a napkin. This morning, he told me there was a bill he'd forgotten to pay, and we had been talking to Pat about her pills, so he handed me three pills, and I put them on her napkin. My mom argued that she was not taking the right pills,but, not giving her the benefit of the doubt, I told she was and she took all of them. Well, it turns out that I had given her my dad's pills too. Fortunately, even though he is gravely ill, he isn't on any medications that would hurt anybody. They took him off his blood pressure medication because it turns out that the fluid in his abdomen is being caused by tumors weeping. This lowers his blood pressure, so they don't need to medicate him for that. They also no longer really care about his cholesterol. So, he is on an anti-depressant, an Ativan, and something else that's pretty mild. But never discount the power of the placebo, and she started insisting that she was dizzy and the room was spinning. However, she usually says that twice a day, and I usually say, "Then why don't you go lie down." And she never does. Or at least not without popping up two minutes later to go to the bathroom or look for something or call to verify an appointment she has already called about, so I finally give up trying to get her to nap. She is like a recalcitrant toddler in that way.

The very next and immediate crisis was that her hair appointment is USUALLY on FRIDAY morning at 10:30 a.m. However, they called and told me Thursday at noon, so I wrote that down. Then she was furious that I hadn't given her the phone for HER phone call, even though she was not home at the time that they called. She has no sense of how insignificant and minor her hair appointment is. In the grand scheme of things, it doesn't even rank, and I told her that. Honestly, we mostly just honor them because they give us an hour or two of peace. And the woman who does her hair is another saint, and frequently cuts my mother's toe nails for her.

The hospice doc came today-- another geat person-- because we were wondering if my dad should have his abdomen drained. He explained to us that he wanted to wait, in spite of the fact that the hospital had done two dramatic drains in three days. It's very very taxing to the body, would lower his blood pressure and dehydrate him, and the body responds to being drained by trying hard to replace that fluid. They took two liters Friday, three on Monday-- so every time, it just makes it a little worse. When he drains it, he won't drain nearly that much fluid-- he doesn't think more than a liter should be taken at a time.

He explained things that I didn't know-- like the fact that tumors are causing the fluid build up (and his kidneys failing). I also did not know that his abdomen and brain have tumors now too. That was a stunning progression from showing us scans that showed very minor amounts of cancer in his lungs and liver-- but he said melanoma is still very mysterious. One day you can have a clean scan, and then very soon after have it head to foot. This is not unusual. The only good thing about melanoma is that it doesn't cause a lot of pain. But if he starts to have pain or starts to really fight for breath, we can give him liquid morphine under the tongue, and it will help with both. And the liquid morphine isn't nearly as scary as I thought. It has a short half-life, so it doesn't last very long-- but its effects seem to be pretty immediate. So, we talked about if my dad started panting for breath toward the end or panicking because of air starvation, and how that is what the liquid morphine is really for. And, of course, pain if it occurs.

Nicole the social worker had told us that if we didn't have a living will and advanced directive (we do), then if we called 911, they would do EVERYTHING to resuscitate him, and it would NOT be a pleasant experience for our dad. I asked Matt later why anybody using hospice would bother to call 911, and he said, "Because they panic." So, we have learned that when we feel panicky, we should administer liquid morphine and call Hospice. Not 911. It is dreadful knowing this is coming. Especially when he is doing so well right now.

I followed the doctor to his car and asked him if he could give us a best guess about a timeline. He said two or three weeks, which is consistent with what we have thought, maybe a week or two longer than we had first anticipated. I just nodded. He explained that the cancer is already affecting his blood platelets, which makes his heart work harder. He will also lose more lung volume. I had previously thought (and I think written here) that he'd have a potassium build up and have a heart attack, but it seems that he won't. It is indeed the cancer that is going to shut his body down. In some ways, I find that more comforting than his heart, because it's so easy to hate the cancer and to be angry at it and blame it for being so vile. I admit, I worry now about getting melanoma, because I am fair-skinned and I have had my share of really awful, blistery sunburns.

I said over Christmas break at one point, when  neighbor was visiting and telling horror stories about growing old and people he knows growing old, "Man, the more I hear about aging the more 65 sounds about right to me." And my dad said emphatically, "Wait and see how you feel at 65."

I repeated something similar to one of my dad's old friends from our Denver days, who knew me when I was just a little girl, and he said, "Jennifer, it changes when you get older." I admit that this has me kind of shaken up. I've been a pretty arrogant little 41-year-old, cavalier, talking about how I smoke because I want to die before the alzheimer's kicks in, but now I'm a little worried that there may come a day when I find myself really screwed over because my predictions have come true and I no longer want that fate. I have told a couple of friends this:

This is a lot like the experience of becoming a parent, because no amount of reading or anticipation or preparation can prepare you for how you will feel about that child. And you just have to experience it for yourself. There is no other way to do it. And I remember when my water broke with Sam. I had this incredible sensation of panic, because I realized that there was absolutely no way I could get out of this. I had to move foward. I had no choice, and it was going to be dramatic and hurt and it was going to be scary, and oh my god, wow, I really don't want to do this right at this moment, and wow, I really have to anyway. I've led a charmed life in a lot of circumstances in which I have been able to talk my way out of unpleasant experiences, or postpone or dodge them. So, it really shakes me up when my brain is racing to find the exits and discovers it is in a circular room with no windows and no doors, just a completely dark and scary tunnel in the middle of the floor. And no way out but through.



Wednesday, January 19, 2011

Graces

Tuesday

Just as the other night I felt crushingly overwhelmed and sad, I am amazed today by the difference in my mood and how happy I am. After I wrote "Odyssey" I went to bed and read for awhile. Then, I tried to sleep. Unfortunately, it didn't happen. I texted Dereck in the middle of the night that I missed him and was sad, and then I went out to the garage to my smoking corner and had a good boo-hoo for awhile. Then I went back and tried to sleep again.

Then I got up and went upstairs and listened to my mom breathe and wished my brother would have insomnia too. I finally got to sleep somewhere around 4am, without turning off my alarm. It went off at 8:30, and again, I couldn't get back to sleep. So, I went upstairs.

After Sunday, I walked upstairs into a sniper's den. My mother woke up with a target on my forehead, and there was a little red light on it all day as she took shots at me. I am not sure why she singled me out particularly, but we do push each other's buttons. It's not like she was nice to Matt, but it felt very vicious and personally aimed at me. I tried to tell her that I was so tired I was shaking. She kept saying things like, "So, you called all of my brothers and sisters and asked them if I was insane, right?" and "So, you're saying that I'll have no money. I'll have nothing."

At one point, when it had escalated to the point that I was leaving the room to head to the garage, she yelled, "I know you don't like me," and I hurled back at her, even more loudly, "Well, you don't like me either, so who gives a shit?"

She started to fake cry and said, "I love you," and I just said, "Oh boo hoo," and went out for a cancer stick. I went back in and Matt suggested we all try to remain civil, and I just couldn't do it. Just little snide things would come out of my mouth as she muttered her little mean things, until I just decided to put myself back to bed.

I didn't really get a nap-- damn brain-- but I did doze. Then I got up and printed out a bunch of manuscripts I needed to do some work. And then I emailed my clients and told them that I was sorry, but I couldn't do it right now. Every single member of the department I work with emailed me back and told me to focus on my family right now. It was one of those things where you just cry because people are so nice.

I went upstairs and told Dereck I had put work on hold, and then I cried because I felt bad that I can't work, and I was so tired, and my mom was being so mean, and then I got off the phone to cry, and I just had a complete meltdown. Matt was out getting lunch, so I just sat and cried. And then a funny thing happened. My mother instantly switched to being nice, and saying, "This is so hard for you-- he's your dad!" and she finally convinced me to come sit by her so she could stroke my head and I cried on her shoulder and we told each other we love each other. I've been saying/thinking to myself for so long that it would be so nice if I could just have a mother's comfort right now, if she could just act like my mother for five minutes. And, unexpectedly, she did. That was the first grace.

My dad arrived yesterday late afternoon. The hospice people are so nice, I want to give them money. I want to work for them. I want to buy them all a Coke.

We got my dad settled. Yesterday in between bouts of tears and meltdowns and bickering, Matt and I got the guest bedroom completely emptied of everything (no small feat) and vacuumed. Matt made a gorgeous wall of family photos that my dad and I sat and looked at and talked about today. Dad was tired when he got home-- the one complaint I have is that they literally just put him into the back of a van that had loud chains in it, with only the driver (who was a fat putz). If I had known, I would have driven up to Salt Lake so I could ride in back with him. He said it was like a prison transfer. Super.

But once the fat putz left, he immediately felt better being home. He said the hospital was pretty impersonable, except the girl who did his chemo. She knew he was scared, so she kept joking with him and saying, "Are you ready? I'm gonna do it! Here it comes!" and made him laugh. And the chemo turned out to be great-- which just shocked me because I thought it would be horrid and I didn't think he should try it. I don't think they are going to do more chemo with him-- but I don't know. He is on 6 liters of oxygen, but no IV, so he was very dehydrated last night. Today he seems better. The nurse hasn't been by yet, but I thought of asking her about an IV, except that today he is better. We've also been crushing ice for him to eat to moisten his mouth and gave him neosporin for his chapped lips. Oxygen is drying. His best friend Ken from Ohio came over and visited with him a long while. I was so happy that Ken came to see him-- and so jealous because I hadn't really had any face time with him yet.

One thing that may not seem like it would be difficult is this: My dad is sitting up in bed right now, chatting with his friend John, who also flew out from Ohio, and his legs are crossed on the bed, and earlier he and Matt and I hung out and chatted. He needs a hand out of bed, but can walk strongly to the bathroom.

Wednesday

This morning, he sat up in bed with a bowl of cereal, legs crossed in the air, reading the morning paper. He is alert, cogent, smart, and still funny and entertained. Tonight, I ran to him when he called and he said in a sing-song voice, "I smell your cigarette!"

"What?"

"You've been Smoking!" he teased me

I asked him if he wanted to take off his oxygen and come smoke with me, but he declined for some reason.

Anyway, all of this normalcy, except for the volume of fluids accumulating in his abdomen, throws me off because his mind and self are still in tact, yet his body fails him, and with her... I realized yesterday (Tuesday) that I was starting to develop some false hopes that maybe the doctors were wrong again. And in ten years we would joke about, "Hey, remember when we got Hospice for Dad? And it turned out to be this totally minor thing?"

Actually, I have sort of had something like that happen to me before. When my friend Linda had a stroke six years ago, she initially refused a feeding tube. So, her husband and I started organizing the requisite 24-hour round the clock care that is required by Hospice in order for patients to come home. We had volunteer and meal offers from everyone in town, it seemed, probably including many of you. We had planned for her to be surrounded by loved ones and at peace. And then they realized that maybe they hadn't fully explained the consequences of no feeding tube to her, so they asked her again, explaining this time. And she accepted the feeding tube. She lives at home with her family today, having done so well in rehab that she walked out of it. After initially being Locked In.

So, I found myself entering that scary territory yesterday. So, I pulled out the thick white envelope the hospital had sent detailing his hospital visit. There has been a miscommunication between his liver and kidneys, or something. Perhaps contributed to by dyes used in MRI and PET Scan testing in December (oh, just kill me now. Really?). His melanoma is working quickly-- I notice another raised lump on his skin a few times daily. And he is also suffering from acute renal failure. And when a patient already has a terminal diagnosis, they regard dialysis to be prolonging suffering. So, either the cancer will spread and his lungs will fail, or his kidneys will continue to fail and potassium will build up in his system and give him a heart attack. I can't even believe I'm typing these words. Tonight I asked the nurse what we can expect-- how will we know when he starts to fail? And she gave me two pages in the hospice binder to read. He isn't failing yet.

Another grace is that yesterday, a couple we knew in Athens, Ohio, in our little church (Carol and Roger, for those of you playing along from Athens). They were in Utah because their son (Aaron) was getting married. They did not know anything about my dad's condition. They had just called to see if they could stop by. They were absolutely devastated. They came by today, and it was absolutely lovely to see them. There is another friend from that church who was going to be in the area next week anyway, so he is coming by on Sunday. This kind of serendipity makes me want to weep with its beauty. My father is getting to see so many people who were important to him, and to whom he has had a life-changing effect. What a gift this is. What a grace. My dad is an Irish Wake kind of guy, and he is as close to being present at his own Irish Wake as a person can get, I think. Only, we can't have alcohol in that room because of the oxygen tanks.

Segues

1. [This morning, I spilled bright red Gatorade all over the beige carpet of his room. I was thinking, 'Oh, we can clean this with Resolve," and I wasn't thinking of doing it right away. Thank goodness, because the next thought I had was, 'Resolve plus oxygen tanks. Well, the entire C____ family would have surprised Peter at once.'

2. [The other day, I told my mother that I was a mean person when I was apologizing for... being a mean person, and she said, "Well. You are a C____."

I just looked at her and said, "Oh, well done."]

I like to think that all of this serendipity lining up like this is my dad's reward for being such a great person. I don't really believe that life works like that though-- too many people die horribly for me to believe such a thing. But I'm extremely grateful to be able to witness this.

Tonight, I was asking the nurse what the fluid is that is gathering and extending my father's abdomen. [My father asked me this morning if I were chronicalling my life with a dying father. I told him of course I was and offered to read it to him, but he would prefer to talk.] The nurse told me that I needed to think of his kidneys, in their failed state, as greedy and selfish-- they don't want to let go of anything. When kidneys are working, they are generous and let things go.
For some reason that had a certain terrible symmetry to me.