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.


  1. Hard to watch....and hard to read, too. I have done lots of volunteer work over the years with the elderly, and I've heard about it from the (often demented) patients' perspectives, but your blog gives me a glimpse of their families' perspective. Your compassion for your parents -- for both of them -- is inspiring and beautiful.

  2. Thanks for all of the updates. I wish I could do more to help you. I'll miss his laugh and his stories. I've missed hearing him and my mom roll with laughter as they told stories about growing up in Idaho and the crazy things that Grandpa did. I'm glad they have you to care for them, you're doing an awesome job. Know that I think of you and your family often, everyday. Love you.

  3. Unfortunately, this is something my family has had to do over and over again, particularly the dementia side of your experience. We've done cancer too, but that particular case was kept from my immediate family until it was too late to do anything but go to the funeral.

    Like you, I've thought this was something everyone goes through. And I have thought at times, that I would give anything for my parents to have massive heart attacks or a car wreck instead, where I don't have to watch them die and only have to deal with the aftermath. Maybe that makes me a horrible person. Or maybe it just makes me a daughter who doesn't want to see them suffer (or have to deal with how they can be when they are suffering).