Not too long ago a friend of mine talked about making a list of what behaviors would persuade him to move out of the house they’ve lived in for well over thirty years. That brought up the topic of when is the right time to move from active care to palliative or hospice care. These are all difficult choices. Sometimes they are more difficult for the living than the dying.
In the case of Louie, he had a good handle on how to manage the end of his life. He had a tough life in general, at least it looked that way from here. In the last quarter of his life he had reconciled with his boys, quit drinking, and quit smoking. Those were all good news for me.
He didn’t quit smoking soon enough. Emphysema came on, and with it the need for carrying oxygen all the time. Breathing was difficult even with the aid of an oxygen bottle. He developed sleep apnea and a few other medical issues that really messed with his sleep the last couple of years. I think the chronic fatigue got to him. After working part-time at the Campbell County Jail as commissary, he finally had to quit. His hobby became keeping track of all the deputies by listening in on the police scanner. He knew all the codes and all the officers.
He was very aware of the trajectory of his life, and started making plans quite early on. On one visit, I remember arriving at his apartment for a visit to find that most things with emotional value had a label on them. Guy. Linn. Eric. Chris. He had taken the time to think about everything he owned, judge its value, and tried to make a fair distribution.
Louie made a point of doing things when I visited. There was a nice county historical museum in town. He liked to go to the coal mines and watch the activity. When there was a county fair or rodeo we would always take it in. Every time we had to go out for dinner at one of the nicer places in town. These outings got shorter and more strenuous as the emphysema caught up with him. Carrying the oxygen was cumbersome. He couldn’t walk very far. Getting in and out of the car was just too much work.
Louie didn’t ask us to join him for most of his medical evaluations, but the time came when he received a diagnosis of something that would eventually take him out. He was never very open about what it was, to the point where I’m not sure even he knew what was in there. He didn’t want to go in for the definitive tests to get a specific diagnosis. He didn’t want any treatment to stop or slow down the disease. Life was getting too damned difficult, to the point where shorter was better. His world had pretty much become just that apartment.
Shouldn’t a diagnosis of a terminal illness be a sad thing? Shouldn’t the fear of death almost paralyze a person? Not with Louie. He actually seemed happier and more fulfilled. He had accomplished everything already in his life. There were few regrets, and none that had to be rectified. He made a few last changes to his life; the most obvious being adding salt, bacon and cookies back to his diet. Previously a heart attack was something he feared. Now that he was under a “Do Not Resuscitate” regimen, that same heart attack would be a welcome thing.
His days were now focused on enjoying what little was left of his life. Medication changed to accommodate pain relief and improve comfort, no longer focused on preventing some far off disease. Friends came to visit, but those visits became shorter and further between as he had fewer experiences to share with visitors.
When he could no longer manage medications and keeping up the apartment, Linn and I moved him to the nursing home wing of Pioneer Village. Since he claimed to have a short time left in this world, mere months, we decided to pay extra for a single room, moving as much furniture and dozens of photographs into the little room as we could. He was thrilled. His world was now down to one room. Little did we know that it wasn’t just a couple of months, we ended up paying that single room differential for nine months.
We fell into a new routine with Louie in the nursing home. I would make the seven hundred mile trip every other weekend or so to say hello, talk to the hospice and home staff, and visit with Louie as much as he could handle. Linn stopped by almost as often. Chris and Eric made several trips, too. Louie wasn’t hurting for visitors.
Time just went on. It wasn’t much of a life for him. Email became too difficult. Reading was no longer an option. Even television was too much work. His world continued to shrink.
The day before he died was possibly the most pleasant memory I have of him. He was fading, Linn and I had been with him in the nursing home for a couple of days, just visiting and being in the moment. He rarely left his bed and didn’t eat much. The hospice service stopped by often to adjust his morphine drip and talk about what else we could do to make him more comfortable. Then one day about lunch time he seemed to come alive. “Let’s go to the cafeteria!” he said.
“But you have lunch on the tray right here,” we said. He wasn’t interested in eating. His goal was to see all of his friends and acquaintances one last time. We wheeled him around the large dining room, stopping at each table. He would announce his imminent demise and tell us some story about the person we were talking with. It was far from a morbid experience. He was in heaven already! Talking to his friends, telling stories and laughing. None of them believed that he really was saying goodbye.
After saying good-bye to everyone in the dining hall, he asked us to take him out to the courtyard. He now wanted to just sit quietly with Linn and me, enjoying a beautiful late summer day. Blue sky, clouds, trees and grass. Two of your boys, making memories of a good day.
Back in the room, Louie took another hit of the morphine pump and drifted off to a nap. He napped most of the rest of the day. Linn and I went back to the motel for the night. About three in the morning my phone rang. It was Linn. He had had a dream that he had to go see Louie. Now. I chose to stay and sleep. Louie was restless and asked Linn to remove the oxygen mask for a bit. Again he seemed to come alive with a message to deliver. “Thank you! I love you. I love you. I love you.” were his words as he went back to sleep. Both Linn and Louie were sleeping when I got to the nursing home room early in the morning.
Linn left to take a shower and have a quick breakfast while I sat with Louie and read a book. There wasn’t much to do other than push the button on the morphine pump when it was time. Louie was sleeping quietly. Very quietly. He never spoke and his breathing grew slower and shallower. It was really hard to say exactly when he left. Everything just got quiet.
I closed the door to the hallway and sat alone with Louie for a long time. Then I called Linn with the news and called the nurse to make the final arrangements.
Louie had a good life and a good end in August of 2007. Now his world is everlasting, unending, beyond our understanding.