Friday, August 24, 2007

Uncle Charlie, August 24

Uncle Charlie died this morning at 7 am.

So long, Charlie. We'll miss you.

Wednesday, August 22, 2007

Uncle Charlie, August 22

I haven't posted about Charlie for a couple of days because I guess I've just been waiting. Like him.

But Uncle Charlie is coming close.

Earlier, he was upset because he wasn't dead, and I think that was keeping him alive, contributing to his agitation and keeping him with us.

He really thought he was a goner at first. The doctors operated on him, looked at his pancreas and said, 3 weeks tops. One guy gave him a week. That was in mid May, and Charlie is still with us. But he just wants it to be over with. He didn't want chemo or radiation. He just wanted it to be over.

When the hospice started, he thought he would be dead in a week or so. The hospice nurses came to his house for the first few days and gave him hospice care there. This was hard for him because he was in a lot of pain and getting a lot of pain killers. When he asked to go to the actual hospice unit, he thought he would be dead in a day or two.

Then the dying just went on and on, and he just wanted to die. When he was awake and clear, he'd ask repeatedly if he could go home. He was sure that the hospice care was keeping him alive, and he didn't want to be alive any longer. That was Monday, the day I left Hollywood, Florida, and drove back up to Valdosta.

I talked to his brother Tony today, and he finally got someone to talk to him at the hospice. A nurse told him that she thought Charlie had another couple of days. Charlie's terminal agitation has stopped. He stopped talking too, even the raving that he was doing. He's lying tucked under a sheet--breathing hard, really hard, staggered, drawn breaths.

But life is hard to give up on.

When my mother was dying, she couldn't talk, couldn’t eat, couldn't move any part of her body. All she could do was blink her eyes, and I asked her if she wanted to die or if she wanted me to try to keep her alive. I told her to blink if she wanted to stay alive. She blinked.

Tuesday, August 21, 2007

Mike Rychlewski Talks about Dying

My friend Mike, a Chicago writer I’ve known for 40 years, wrote me a letter after reading some of my blogs about my wife Linda’s Uncle Charlie and his dying, and I thought I would pass on what he wrote. Ever since our days together as students at the U of I, Chicago, Mike has always been able to get to the center of things.

Here’s what he sent me about some of the people he loved who died:

Dying from burns over 70% of his body, my father flopped and flailed like someone getting shock treatment or being blasted in the chest with electric mittens. Two nurses were holding him down as he popped up and down.

My mom was lying on her bed in the nursing home with her back to the dark TV screen in the middle of the afternoon when there was a Cub game on. I asked her why she wasn't watching it--she had never missed a game--she said she wasn't interested.

My uncle got up from his bed at the nursing home, walked out the door, hailed a cab and took it ten miles across Denver. The found him that night wandering around the neighborhood he grew up in as a boy.

My other uncle sat on the edge of the hospice bed and took out an imaginary pack of cigarettes from his breast pocket, shook one out, reached into his front pocket for imaginary matches, pealed back the cover, lit the match, held it to the cigarette, took several puffs, finally got it going, and sat there for ten minutes smoking it. It was a performance that would have put Marcel Marceau to shame.

My bachelor cousin at 93 was lying in his gentleman's nursing home hospice room and his nephew from Virginia, who had been bearing witness for two months, finally had to go back to his wife. He said, "I’m leaving now, Mac." Mac said, "Wait!" and he summoned the nurses, insisted they dress him--he was the most elegant dresser I ever knew--he got on his white shirt, blue sport coat, gray slacks, silk tie, lapel handkerchief, spit-shine shoes, took off the oxygen and the IVs, slowly walked to the dining area and ordered the two of them tea and cake. They sat there and ate it. Mac said, "This is what I want your last memory of me to be."

There's no meaning, no purpose, no hidden agenda.
No one's death is more or less dramatic or poignant.
There is no scheme to the universe and we're neither less nor more than nothing.
The love of the people we know.
If you don't have it, God have mercy on your soul.

[The photo above is of Mike at the graves of his Mother and Father, St. Adalbert's Cemetery, Niles, Illinois, Summer 2005. My parents are buried here also.]

Saturday, August 18, 2007

Hospice, August 17

When we went to the hospice today, Charlie was in another room. The nurses had moved him because he kept trying to get out of bed in his old room. The new room was right next to the nurses’ station, so they could keep track of him better. The could keep an eye on him all the time so he wouldn’t try to get up out of bed and start heading home.

But there didn’t seem much chance of that. Lying in his bed, he seemed quieter, the terminal agitation and restlessness had stopped. Charlie looked at his brother Tony and didn’t move—it was like Charlie was surprised we were there and didn’t have the words or energy to tell us what was going on.

After a minute, he said, "I had a strange experience today." And he tried to tell us about a dream that he had, but he wanted us to know that it wasn’t a dream but that it had really happened, and he wanted us to say that we believed him when he said it really happened. And I said I believed him, and I told Tony who couldn’t hear very well to say that he believed, and he looked at me with a question and then he said he believed.

The story Charlie told was confusing. It must have been some kind of half dream half waking reality that he experienced, and what made it hard for me to understand his story was that I could hear some of what he said but not other parts.

The story was about his home, and somebody trying to take his home away from him, and this person was a communist and a guitar player, and she tried to get the house from him for $99 but he fought her off. He wouldn’t sell no matter what terrible things she did to him, and he kept talking about the way she tried to get him to sell, offering more money and less money and then more money again. And during all of this pressure to sell, Charlie saw above and behind her head these messages that appeared in different colors, yellow and blue and red, and I asked him what the messages meant. He couldn’t tell us because he couldn’t read the messages but he knew that he wouldn’t sell the house for $99 or $77 no matter what she said or what terrible things she did.

And then he stopped talking and asked if I understood. I said I did. I had read in one of those hospice pamphlets that they have lying around here that you should agree with whatever the dying say, so I said I did. And the pamphlet must be right because he seemed happy that I understood. And really, I think I did understand.

Charlie then said, "Give me a hand," and I thought, Oh oh, he’s going to try to get out of bed and that’s just what he started doing -- his feet started moving to the edge of the bed and he gripped the bed rail and started pulling himself up. And I thought, the terminal agitation’s back.

Tony called the nurse, and she came in, and I thought she would try to put Charlie push back into the bed but she didn’t. She helped him out of the bed; she helped him get his feet in his red socks on the floor – and when she had him standing, she held his arms while he took a step and then another toward the bathroom. It was a miracle.

I had to get out of the room – it was too much, and I went into the lobby and sat down. Five minutes later, Tony wheeled his brother out of the room in a wheel chair. They took a spin around the room and went into the dining area and Charlie sat looking out the window toward Pembroke Ave and the north side of Fort Lauderdale.

The gigantic white and blue clouds lifted off the horizon and rose to the rich blue at the top of the sky. It was the kind of day that probably set kids dreaming about visiting Tahiti or Fuji or the islands Herman Melville visited as a boy when the 19th century was still a kid and people traveled across oceans on sailing ships that were like clouds anchored to clean-planed oak planks.

After a while he said he was tired, and Tony wheeled him back into his room, and he and I helped Charlie get out of the chair and into the bed.

As soon as he laid his head down on the white pillow he fell asleep.

Thursday, August 16, 2007

Terminal Agitation, The Hospice, August 14

When Linda told me that the nurse said Uncle Charlie was terminally agitated, I thought she was joking. It reminded me of old washing machines with their agitators and the talk of communist agitators during the 60s and what the old Italians call giving someone "agita." Agitation seemed like such a funny and soft word to describe anything to do with death and the hard facts of dying.

But the nurse said she wasn’t joking and after Linda got off the phone with her, we googled "terminal agitation" and there it was, on a page dealing with hospices.

Here’s what we read:

What is Terminal Restlessness or Agitation?

Those who work with the dying know this type of restlessness or agitation almost immediately. However, the public and patient's family may have no idea what is going on and often become quite alarmed at their loved one's condition. What does it look like? Although it varies somewhat in each patient, there are common themes that are seen over and over again.

Patients may be too weak to walk or stand, but they insist on getting up from the bed to the chair, or from the chair back to the bed. Whatever position they are in, they complain they are not comfortable and demand to change positions, even if pain is well managed. They may yell out using uncharacteristic language, sometimes angrily accusing others around them. They appear extremely agitated and may not be objective about their own condition. They may be hallucinating, having psychotic episodes and be totally "out of control." At these times, the patient's safety is seriously threatened.

Some patients may demand to go to the hospital emergency room, even though there is nothing that can be done for them there. Some patients may insist that the police be called ... that someone unseen is trying to harm them. Some patients may not recognize those around them, confusing them with other people. They may act as if they were living in the past, confronting an old enemy.

I got that from the Hospice Patients Alliance. Here’s there link:

But that didn’t come near describing what Charlie was going through.

He wanted so bad to get out of bed and stand up and walk out of the hospital that no word from Tony or the Nurses or the doctor could turn him aside. Charlie wanted to be on his feet and moving toward the door, and more than that. He wanted to walk out the door to the elevator and take the elevator downstairs and then walk into the parking lot and get into his candy-apple red 98 Mercury Sable and drive away from this hospice like a man being chased by the devil.

But he wasn’t going anywhere, even though he moved his feet toward the foot of the bed and he tried to grab the bed rails with his hands and pull himself up. He tried that over and over. You’d put his feet under the sheets, and he would try to lift his shoulders up off the bed. You’d tell him that he couldn’t lift himself up, and he’d try moving his feet toward the edge of the bed. And all the while he’d be talking about leaving the bed and getting stronger and walking out of the hospital. He’s spent days trying to get out of bed and telling us he was feeling fine and was ready to go home—even though he was down to 80 pounds and his skin and eyes were a sandy yellow color.

And when he wasn’t talking about how good he felt, he talked about people he had to call and things he needed to do, the projects he was working on and the places he needed to shop at. His mind was working overtime at time-a-half spinning through all of the unfinished business of his life. He was like a man on fire.

Thursday, August 09, 2007

News from the Hospice

I'm at Charlie's place and Tony has to make some funeral arrangement calls, so I have a couple of minutes to write.

Charlie thought his death was imminent and so he decided he would go to a hospice. The hospice is pretty rough: dirty windows, small rooms, two patients in a room, overworked nursing staff that complain about patients being too demanding. The nurses don't seem to be aware that the patients are dying and have a right to be demanding. I heard one nurse say to a dying man, "You've pressed that button 7 times, there's nothing I can do for you. I have other patients to take care."

It's called "The Hospice by the Sea," and when I first heard Charlie was going there I had this image of a place near a beach where you could look out a window and see waves under a rising sun, and trees and gardens. But it's not that way. The place is in the middle of Hollywood, Florida, a heavily urban city just north of Miami. You can't see the sea. There are some pictures though of water.

Anyway, Charlie is there waiting to die, and it's not happening as fast as he thought it would. In fact, he perked up as soon as he got there. He started complaining about the room, the nurses. He's in some pain too. They only give medication on demand for some reason, and Charlie has always been shy about making demands. He went 8 hours yesterday without anything.

He thinks that the stronger the pain gets the closer he is to death. He's afraid that the morphine is forestalling death. We got him to agree to take something for the pain finally when it got impossible.

While Tony and I work on the condo and Charlie's stuff, Linda is there from 9 am to 8 pm each day. Keeping an eye on Charlie and arguing with the nurses.

Yesterday, we were sitting there and the guy next door got so annoyed that he couldn't get a nurse's attention that he knocked his chair over, and started banging it against the wall.

Finally, a nurse came. I don't know what this guy's story is, but he's from Peru, he's dying in Hollywood, Florida, and his wife is in Peru and doesn't know where he is. He wants to call her up but the nurses just hand him the phone and he can't figure out how to make an international call.

At one point his wife called. The nurses put her through to his room, but he couldn't handle the phone and lost the call.

Linda and I are furious with this place.

But Charlie is adamant about remaining: "I'm staying here until I die."

Sunday, August 05, 2007

Let's Have a Party

Yesterday, I got a comment at this blog from Matt asking what's up with the blog. Here's what he wrote, "Really I have to observe, John, that you're falling down on the job vis a vis your posting on your blogs. Your ability to post just isn't keeping pace with my willingness to respond."

I know he was joking. Matt's got a sense of humor, and about half of what he and I exchange is jokey. (Take a look at his blog Urkat's Revenge, and you'll see some of his humor:

But the question got me to thinking that I should tell people what's going on.

My wife Linda's Uncle Charlie is dying of pancreatic cancer, and we've been down to Coconut Creek, Florida, to help him and Linda's dad Tony Calendrillo a couple three times in the last month. Linda's dad is doing a terrific job, but it's hard to help someone die all by yourself. Hillary Clinton would probably say you need a village, and she's probably right.

Charlie's a fighter. When he was younger, he was a serious student of karate, a guy who believed that discipline and foresight were the tickets in this life. Dying, he appears to feel the same way. He's thought through his dying and he's decided to do it at home, living the way he has always lived with as little interference from others as possible.

It's not easy.

The cancer has spread to most of his body, and he's a dark yellow from jaundice. He hasn't been able to eat much more than a little watermelon each day for the last two months, and so he's weighing in at about 90 pounds more or less. We can't really tell how much he weighs because moving him even a little is so painful to him.

Last week, he finally agreed to allow hospice into his home, and that's helped him a lot.
He spent a good portion of the 1950s as a performer, a trumpet player and band leader in LA and Phoenix and Las Vegas. He performed with Sarah Vaughn and Jimmy Durante and Ida Lupino and Rhonda Fleming. On stage, he played and sang and danced and told jokes.

Dying, he can't do much, but he can still tell jokes, and the hospice nurses who come to his house are a fresh audience.

He loves it.

When she was dying, my mom once looked around her busy hospital room at the nurses and patients rushing here and there, and she heard the voices in loud talk or laughter, and she turned to me and said, "Some of us are dying and the rest of you are going to a party."
What she said seemed profound to me. It seemed to get at something essential about what's going on around us -- always.
Yesterday, the last time Uncle Charlie was able to sit in a chair, before the pain of sitting made it impossible, he whispered to Tony and Linda and me, "Before I die, let's have a party ."