Dad in February

The third and fourth weeks that Dad was here, he had radiation treatment every day. And he got more and more weak and tired. He was still able to get around the house on his own, but other than the radiation treatments, he just stayed home. He didn’t read or putter on his laptop. He didn’t talk much. He napped a lot. Sometimes he talked on the phone to friends. He was nauseous and in pain, and his medication options were limited by his inability to swallow; we used dissolvable zofran and concentrated oral morphine. He was cold most of the time, so he sat by the fire and dozed.

His fatigue may have been a side effect of the radiation, or the morphine, or a symptom of malnutrition, or cancer – or all of the above. I stopped feeling comfortable leaving him alone for more than maybe an hour, because he was so weak. I sat with him, and did stuff around the house, and did the work of managing his care. Every day was structured by medical events: the radiation treatment, the IV nutrition, nurses visiting to check up on things, equipment being delivered.

We had a ramp built in front of the house. It seemed obvious that he would need it.

On Friday of the fourth week, he had a drastically bad day, involving not only radiation treatment but also a bone scan and some terrible traffic on I-5. He missed his regular dose of pain meds and became extremely exhausted. When he finally got home, he got into bed, and barely woke up for days. His vital signs were poor (low blood pressure, low blood oxygen, rapid pulse, shallow breathing). The visiting nurse warned us that he might be near the end. At some point when he was awake, I told him what the nurse had said, and he asked me to send an email to his friends to come and visit him. They did, and in the fifth week nine beloved friends came to see him. He rallied, and was able to enjoy his visits with every one of them. It felt like a triumph.

Those who could not visit sent letters and video messages, and we read or played these aloud to him. This was awesome; he was very touched, and we all got to learn more about what he had meant to people. Also during this week, his throat got better: he could swallow his own secretions and no longer suffered from nausea. However, he was still very weak and very disabled, needing a lot of physical assistance to do anything, and a lot of active pain management.

In the sixth week, we hired home health aides to take care of Dad 40 hours a week (during weekdays), to relieve me from much of the physical care that I had been doing. They were wonderful with Dad, and I was so grateful for their help. Dad accepted their care, and tried to get a little stronger by doing things like getting out of bed for a little while each day. His throat continued to be better, and he was even able to drink a little water. He was still receiving IV nutrition around the clock, so the drinking was recreational. But it gave him tremendous pleasure. No one can appreciate a sip of cold ice water like a person who thought they would never have one again.

He remained extremely weak and disabled. Getting out of bed was an achievement. His pain was significantly worse, and we were always chasing it. To some extent this is just how it is with cancer, and with opiates – the pain is a moving target (in his case mostly due to his bones crumbling), and the body adapts to the morphine. Nonetheless it was very stressful and worrisome. The goal is to keep the person both comfortable and awake, and it is an elusive goal. By then he had not been out of the house for weeks (since the end of the radiation treatment), and only got out of bed once or twice a day.

During this period Dad lost his sense of time: he would wake up with no feeling for whether it was day or night, Tuesday or Saturday. To be fair, the life of an invalid is not so different from one day to the next, and he was sleeping off and on without regard to the time of day. But my dad was a man who kept meticulous daily routines and a detailed calendar, and the disorientation was very distressing for him. He always wanted to know what time it was, what day it was, whether he had any appointments that day, who was coming to the house, whether there were any visits from friends in the future. He was always looking for his phone, even though he had lost the dexterity to manipulate it and couldn’t read the screen anymore. Eventually we hung a large-print calendar by his bed and wrote his appointments on it. This was very reassuring to him, and useful for all of us.

During this same period Dad had a lot of very weird dreams that felt very real to him. When he was awake, he mostly understood that they could not have actually happened, but not always. Sometimes he dreamt that he didn’t have cancer, but it always turned out that he did. Once he dreamt that there was a giant bar fight and he was “perched in the rafters with his Group Health gun” (Group Health was his HMO). Many of his dreams were violent or threatening, involving war scenes or international espionage. As the weeks went on, his dreams intruded more on his waking life. Once he wanted me to arrange a meeting with the secretary of state because he thought he was going to be kidnapped by the Russians, who secretly had a cure for esophageal cancer; they were going to take him hostage to demonstrate the cure, and demand payment that would compromise national security. One night when Dale was taking care of him he understood himself to be in a bad restaurant, one with very poor service. “Aren’t there any servers in this place?” he complained. “Can’t we just get a cab and get out of here?” Dale, who was providing the best service possible under the circumstances, said “Man, I really wish we could.”