“Life is now; love is forever.” – Hal Peterson
Since my friend Hal died, I have intended to write about his passing. It has taken me nearly a year to process his death and dying, and to gain some perspective. When I finally began writing, I quickly realized that the task was enormous and that just one post would be so long that nobody would read it. And Hal would certainly want people to read it. How he loved to be the center of attention!
So the topic doesn’t overwhelm, I have settled on three installments.
Part #1: Hal’s Diagnosis
Part #2: Hal’s Journey to Death
Part #3: Hal’s Death and the Celebration of Hal’s Life
Hal was an academic and a musician. First and foremost, he considered himself a teacher. It would tickle him no end to think that somebody learned something from the fact that he chose to die the way he lived – with humor, acceptance and childlike trust.
Part 1: Hal’s Diagnosis
When Hal moved in with Jeff and me, he was already old. He updated his will, and I agreed to be medical power of attorney. I assumed it meant that if he were comatose after a stroke or something, I would be the one to make the decision to “pull the plug.” Pretty daunting, but Hal was very clear about his wishes, and I was the obvious choice. What I never imagined is that I would be called upon to make a decision that would actually facilitate the end of his long life, and that many daunting and controversial decisions would be required of me until the end. While I had wondered about how the end would come for Hal, I had never really thought about the process of his dying.
Hal was 94 when the beginning of the end commenced. I had just discovered that he was eligible for VA benefits and I needed his discharge papers for the application, so after breakfast I went into his room to get them. He was at his desk, writing a letter. He acknowledged that his perpetual nagging cough had tortured him throughout the night, but he seemed stoic. I asked about the discharge papers and he rose from his chair to fetch them. Right away, I could see that something was terribly wrong. Usually spry and scurrying, he clung to furniture to hold himself upright as he made his way across the room. I was alarmed and asked him what was wrong. Uncharacteristically, he snapped at me, “Is this a problem!?” I helped him sit down, and once he was seated, I plopped down into the chair he had just vacated. Even before I spoke, I was distracted by the sight of his letter. It was completely illegible, not even words, but an array of symbols trailing down the page. I asked him about it and he told me that his penmanship had been “going downhill.” I noticed that his hands were shaking, and as I tried to discuss his balance and his hands, he really didn’t seem to register that anything was amiss. I called his doctor, and so began the remarkable 2 ½ week journey to the end of Hal’s long and exceptional life.
The trip to the doctor’s office led to the emergency room and eventually to an outrageously ill-advised discharge. I drove home in darkness, amid wind and freezing rain, with no idea how to get him out of the car, much less into the house. Jeff was away, I needed the prescription filled, and Hal needed some dinner. I called Jerry.
Jerry was Hal’s companion. He visited two mornings every week. Hal and Jerry played Scrabble, put together puzzles, went for haircuts, lunch and “field trips.” They gardened. When I called Jerry on that terrible night, he must have heard my panic. He said to give him an hour. Meanwhile, I picked up a McChicken and stopped for the medication. Once we arrived at home it got more difficult. I was sure I couldn’t get Hal from the car into the house, so I pulled partway into the garage and positioned a chair facing the front passenger door. Then, I eased Hal out of the car and pivoted him to sit in the chair. I used a table as a barrier to falling, backed out the car, and closed the garage door. I explained to Hal that he would have to stay in that chair in the garage until Jerry arrived. He was cooperative and seemed content. Even though our garage is heated, I kept him bundled up. I washed off the little table and put his dinner in front of him. He thanked me, admitted he was “starving,” and asked about the dog. I brought Charley out to keep him company and sat down with him to wait for Jerry. Then, I watched with alarm, as Hal disassembled his chicken sandwich and began to methodically wipe the entire tabletop with his bun. He said he wanted to clean up before dinner. This took a long time, but once satisfied, he ate what was left of his dinner. I waited with terrible apprehension.
At last, Jerry arrived. We quickly made a plan to move Hal into the house, bathe him, and put him to bed in an easy chair in the living room, so he would be upright for relief from his cough. Jerry would sleep on the couch next to him, because Hal couldn’t be trusted not to get out of the chair. Jerry half walked, and half carried Hal to the bathroom and sat him down to remove his clothes. As I helped, Hal reached out and carefully unfastened the buttons on my sweater. He thought he was unfastening his own buttons. My heart sank.
Hal hated that shower! He hollered that Jerry was “killing him” with freezing water (it was hot), but once he was settled, the night passed quietly, and in the morning he seemed much improved. He could walk under his own power and was lucid. When I got up, Jerry had him tucked into his own bed with instructions to call me when he woke. While Hal napped, I called his doctor. She was furious about his discharge the night before and alarmed by his condition. She ordered a visiting nurse, who immediately called to say she was on her way.
By the time the nurse arrived, Hal was awake. As she interviewed me, he arrived in the kitchen under his own power. She took his vitals, and all were normal. She interviewed him, and he responded appropriately. The two of them decided to enjoy a cup of coffee in front of the fire, but before he took even one sip, Hal began to sort of curl forward until his head was nearly on the table. He seemed to be sleeping. The nurse took his vitals, and with a look of dismay, called an ambulance. This time, I chose a different hospital.
While hospitalized for the next two days, Hal experienced varying degrees of awareness. Except for the cough, he was comfortable enough, but doctors couldn’t find anything really wrong with him. As usual, everyone raved about his perfect blood pressure and strong heart rate. The cough remained a mystery. Then, on the second afternoon, a speech pathologist happened to be passing Hal’s room and heard him coughing. She asked the attending physician if she could do some tests and just like that, after 15 years of specialists, there was a diagnosis. Hal had age-induced dysphagia: the inability to swallow.
Hal’s dysphagia was permanent and progressive, but treatable. Within minutes I was given helpful tools, like thickener for his food and drink. Eventually, they took him for more tests, and I snuck out to run some errands. As I checked items off my to-do list, I felt a profound sense of relief. Finally, some answers! Finally, somebody was telling us what to do about that damned cough. I returned to the hospital a bit rejuvenated, but when I swung open the door to his room, I faced an entire medical team. They instructed me to sit.
The attending physician was clear: this was the worst case of dysphagia the hospital had ever seen. Nobody could understand how he had managed, since 90% of his food was going into his lungs. The situation was dire. Hal could no longer make decisions. The power of attorney was being invoked and I had three terrible choices. I could take Hal home, continue as before, and very soon he would develop pneumonia and die, or I could order a feeding tube to be inserted and he could live out his natural life. The third choice was shocking: food and water could be withheld to hasten his death. As the doctor outlined the choices, the rest of the team nodded agreement. Hal looked on, unaware. The doctor expected the decision to be made on the spot. I stalled by asking question after question. It was surreal.
Eventually, I told the team that I needed a little time to think it through. They gave me half an hour. I tried to talk to Hal, but he just wasn’t “there.” I called his own doctor and she assured me that the attending physician was one of the best, and the team he had assembled was top-notch. Based on the information I gave her, she agreed with the choices. When the team returned, I asked about the feeding tube. If I made the decision to have a feeding tube inserted, could it be removed if I changed my mind? Yes. Okay, I decided. Go with the feeding tube. Buy some time. Arrangements were made for the surgery to insert the tube at 7:30 the following morning.
Driving home that night, I suddenly realized that I had made a terrible mistake. The feeling of wrongdoing was overwhelming. I thought, “What am I doing?! Hal would hate this! What am I thinking?! He has been very clear all along! Am I really going to put him through that? He always said that he picked me, because he knew I had the guts to do the right thing for him. He’s counting on me!” I called a friend who thankfully, just happens to be a priest. She told me she would pray, and she told me to wait five hours. If I still felt this overwhelming sense of wrong about my decision after five hours, I could simply call and cancel the surgery. That calmed me, and I was able to think it all through. The sinking feeling never left. I took it as an omen when, in exactly five hours, I received an unexpected call from the surgical team. I canceled the surgery.
I cannot adequately describe my mind-boggling personal ordeal of literally choosing death for someone. This was someone I had known and loved for more than thirty years, and I was called upon to separate feelings from practicality and do, as best I could, what Hal had wanted and what was best for him. Both Hal and I had practical views of death. Though sad, I don’t necessarily see death as a tragedy and neither did Hal. Obviously, it’s tragic if a baby dies or a young person, or one of our own children, because that seems unnatural to us, and is at odds with our deepest expectations of how life is supposed to work. It “rocks our world,” in the worst way. But years of tending perennial gardens and raising animals, generation after generation, has shown me that nature is part of God’s vast plan. Living things are born and when they get old, they die. These are seasons that are repeated infinitely. Sickness and death are as natural a part of life as birth. I don’t believe God has a personal hand in what happens to each of us, so I think when we are tempted to cry out, “Why me?!” we could just as well cry, “Why not me?!” Much of what happens to us, we bring on ourselves; much is a random result of living in the world. In other words, in the grand scheme of the physical world, sometimes shit happens. Like dysphagia.
Hal believed that it was luck that had taken him into his nineties. He didn’t pretend to understand and he didn’t take it personally. He was at the end of his very long life and he didn’t believe that people should live so long that they can’t contribute to the world in which they live. Every day that I knew him he prayed, “Thank you, God for love and life and work to do.” He was grateful for the quality of his long life, because his greatest fear was burdening someone, but recently he missed the satisfaction of a day’s hard work. He wasn’t afraid of dying; he was curious about it. He didn’t want to die, but he was ready.
Still, it was too much for me. On Tuesday he was writing a letter to his friend, Lorelei and just two days later I was choosing to hasten his death. I had a terrible time wrapping my brain around it. I still do.
On Friday morning the hospital loaded Hal into my car for the drive to the care facility that would support him as his life ended. I drove the “back way,” through the country. It was a cold, sunny day. For most of the trip, Hal was silent, but suddenly he said, “Where are we going?” I looked at him and saw immediately that his mind had cleared. He was back, at least for the moment. I took a deep breath and responded. Thus ensued a conversation that ended with what was to be the first of Hal’s many noteworthy responses, commentaries and observations during his two-week journey to the end of his life. Some were poignant, some hilarious, some profound. All were significant. I sent up a quick prayer that I would handle this important conversation well. Hands gripping the wheel, heart pounding, I responded.
“We are going to the nursing home where you recovered from your hip surgery. You know, right around the corner from our house.”
“Oh, that’s a wonderful place! Why am I going there?”
“Well, the doctors diagnosed your cough and it is very grave.”
“Eureka! FINALLY! A diagnosis! What is it?”
“It’s called dysphagia and it means you can’t swallow, anymore.”
“Do you have a pencil? I need to write that down. Spell it. Can it be treated?”
“D-Y-S-P-H-A-G-I-A. No. It’s going to kill you, Hal.”
“Oh. Okay. Well, I’m so relieved to finally know. How long will I be at the home?”
“You are going there to die, Hal. You are not going to be eating or drinking anymore, and over time, you will die from that.”
“Nothing? Not even a drink of water?”
“The alternative was a feeding tube or pretty much coughing yourself to death.”
“Oh, I wouldn’t want that.”
“No, I didn’t think so.”
“How long will it take?”
“Likely under two weeks.”
“Oh. That’s not very long.”
“I guess this is it.”
Suddenly, Hal sat up in the car seat and smiled. He gave a great clap of his hands and exclaimed, “Well then, I guess we’d better get organized!!!”