August 21, 2015. Dad’s day got off to an exciting start at 1:30 A.M. when the central monitor alarm sounded, indicating that Dad’s heart had stopped. Dad’s nurse and the charge nurse rushed into Dad’s room and found him to be very agitated. He had disconnected all of his leads and had removed his central line dressing. When the nurses explained to him that they needed to replace the leads, he struck one of them and refused to have his leads and dressing replaced. They tried to convince Dad about the importance of monitoring his heart rate and keeping his central line covered to prevent infection. Dad would not cooperate with the nurses and demanded to speak with the doctor. The nurses contacted the on-call physician and the staff nurse, both of whom came to Dad’s room. Dr. Henry, the on-call doctor, sat with Dad and talked with him for about 30 minutes. During that time, Dr. Henry told Dad that if he continued to pull out wires and lines, they’d have no choice but to restrain him. To that threat, Dad said, “Well, I’ve been restrained before.” They sedated him, put him back on CPAP support, and he eventually went back to sleep.

Today was dialysis day, so Mom and I spent the morning at home doing chores and picked 284 tomatoes from the vegetable garden. We had picked so many tomatoes this summer that Mom and I were eating tomato sandwiches every day—sometimes twice a day. We arrived at the CCH at 12:30 P.M. and encountered Dr. Smith in the lobby. He told us about how Dad had acted out overnight. He said that Dad’s MRI was not normal, but added that the MRI for an 86-year old was not normal anyway. Because the MRI wasn’t conclusive, the doctor didn’t know whether Dad’s acting out was transient or permanent. Although they could sedate him at night while he was on pressure support, they really couldn’t sedate him when he was off the ventilator. What was disturbing about last night’s event was that Dad was lucid and that he knew that he was in the hospital. Dr. Smith said that Rachel, the nurse practitioner, was working for the next couple of nights, so he’d have her check in on Dad.

Regarding my request to have the tube feeds suspended during dialysis, Dr. Smith said that Dad’s feed rate had been reduced to 10 ml per hour during dialysis, which was a compromise between what I and Dad’s dietitian wanted. The minimal tube feeds probably weren’t in Dad’s best interest, but Dr. Smith understood my fierce concern about reducing the risk of aspiration.

During dialysis, Dad didn’t seem to exhibit any of the distress or agitation that he exhibited five hours earlier. Susan, the dialysis nurse, remarked that Dad had been very talkative during dialysis and told her about his cardiac history.

When I spoke with Dad’s nurse, Cassie, she told me that Dad had remembered her and said something like, “Long time, no see.” She said that some of his conversations would be lucid and then he would drift off to some other topic. She said that he mentioned something about seeing “Dorothy” and someone else, but Mom and I couldn’t think of who that might be. After hearing that he had also spoken about being at Jim’s house, Mom and I assumed that he was speaking about his brother, Jim, and Jim’s wife, Dora. Both Jim and Dora had been deceased for a few years.

Cassie also said that she’d check to see if Dad could be scheduled for Seroquel at night. Before I left for Houston, Cassie told me that his WBC count was 9.0, which was normal. As least something was normal.

I headed home for Houston with a heavy heart. I had been so optimistic last evening and now I was pretty concerned. Not only did he seem to be a totally different person, it now seemed as if Dad was his biggest threat to his own recovery.

Susan, the physical therapist, stopped by during the late afternoon to assess Dad’s condition and set up his goals. Dad’s strength had continued to weaken and his balance was impaired. His first goal was to be able to transfer from the bed to a chair.

Shortly after Susan left the room, Chris, the occupational therapist arrived to perform his assessment and establish goals. Unfortunately, Dad needed to progress with his physical therapy before he’d strong enough to work with the occupational therapist.

By the time Mom arrived home from the CCH and called me, I was at home in Houston. During the day, when Dad was asked where he was, he replied that he was at Walt’s house or maybe Jim’s house. Mom had to tell him that both of his brothers had been dead for several years. During their conversation, he brought up the subject of using the bathroom. During their bizarre conversation, it became apparent to Mom that Dad thought that you used the bathroom by getting on a table. When Mom explained that a table wasn’t involved, Dad wanted to know how it worked. Mom explained about toilets, and she had to spell the word. He proceeded to refer to toilets with a French accent. When they finally got off of that subject, Dad expressed an interest in getting into a wheelchair and going outside.

Fortunately, Dad had an uneventful night and didn’t require any restraints.

August 22. At 9:05 A.M., Cassie, Dad’s nurse, entered Dad’s room to find that he had decannulated himself. Just the thought of it made me queasy. Cassie called for the respiratory therapist, who reinserted his trach tube. This made two days in a row that Mom was greeted with a distressing update from Dr. Smith as she entered the CCH.

When Mom entered Dad’s room, Dad was sleeping, and he slept until 3:00 P.M. When he woke up, the respiratory therapist replaced Dad’s speaking valve. As was so often the case, the conversation turned to the subject of the bathroom. Dad insisted that all he needed was two strong men and he could get out of bed and use the bathroom.

After Mom left for the day, Dad stayed on the trach collar until 7:30 P.M. It seemed that Dad had another uneventful night. I didn’t know if he was tired from dialysis and physical therapy or if he was under the influence of his antipsychotic medications, but he slept through the night. At this point, I didn’t care why he slept. I just wanted him to get through the night without hurting himself.

August 23. Sundays at the CCH were pretty uneventful. There was no dialysis or therapies and you didn’t see the doctors after the morning rounds unless there was a problem. You’d think that the parking lot would be full of cars, but the CCH wasn’t teeming with visitors. The place seemed empty, dark, and depressing. The doctors at Memorial had told me on more than one occasion that a primary reason for transferring Dad from the ICU to the CCH was so that he could be exposed to more light. These rooms had small windows and even with all the light on, the rooms still seemed dark.

After Mom attended church, she stopped by the CCH to see Dad. He seemed to be in pretty good spirits and wanted to talk to me. Shortly after I had eaten lunch, I received a call from Mom. She handed her cell phone to Dad. He and I tried to talk, but he couldn’t hear me very well. It seemed that he wasn’t wearing his hearing aids, so he handed the phone back to Mom. I was happy to hear that he had had an uneventful night and that the day was going well for him.

August 24. Dad’s day started with dialysis. He was starting to become confused about where he was during dialysis and it often seemed to him as if he was leaving the building or going through a series of tunnels. The trip to dialysis was actually a trip down a short hall and an elevator ride to the second floor. On this day, they removed 2,300 ml of excess fluid during dialysis, which reduced his weight from 152.9 to 144.5 pounds. On May 6, he entered Memorial weighing 161 pounds, which was a reasonable weight for a 6’1” adult male. He seemed like a shadow of his former self.

As we had been told before Dad’s transfer from Memorial a few days earlier, Dr. Heath White was back at the CCH as the presiding physician. He had now been the presiding physician for my mother during her hospitalization and for my father at each admittance at Memorial and CCH. He probably felt like we were stalking him. Dr. White found Dad to be pleasant, but confused. Dad’s WBC count was now 6.6, which was very normal and considerably lower than it was the last time that Dr. White had seen Dad and predicted his death.

Dialysis leaves most dialysis patients tired, and Dad was no exception. When Jennifer, the physical therapist assistant, stopped by at 3:30 P.M., Dad was too tired to participate. Mom asked if they could make sure to stop by on days when he didn’t have dialysis.

Cayaana, Dad’s night nurse, found Dad’s mentation to be somewhat impaired. During the start of her assessment, he seemed to be aware of his whereabouts and his situation, but after about 30 minutes, she found that she had to remind him about where he was.

Dad’s mentation problem could be challenging and was raising concerns for Mom. In particular, in honor of my mother, my father had been funding a scholarship for outstanding political science majors at Colorado Mesa University. Shell, my father’s employer for 30+ years, matched my father’s contribution. The deadline for submitting the application for 2016 was approaching. Before she left the CCH for the day, my mother mentioned the deadline to Dad. Mom was pleased to see that this topic sparked a few moments of clarity and he said that he would sign the application tomorrow.

Fortunately, his night was uneventful and he did not require restraints.