Mark spent 21 days in the neuro ICU before being discharged first to the neurology unit and then to oncology to wait for chemo to start. Mark’s body was slowly getting stronger, but one thing remained the same: Mark was a pretty bad patient. This wasn’t a huge surprise, as he was a pretty bad patient before he ever got to the hospital. At one point last spring, I answered the house phone and was told that Mark’s cholesterol was elevated. “They want you to start on a statin right away,” I said. “I’m not doing that,” he shot back. At this point, he had already stopped taking his dilantin. I knew it was useless to argue.
In the hospital, Mark continued to be difficult. Before he had even opened his eyes after the surgery, he was working on getting his restraints off. In addition to the restraints, he had mittens on both hands so he couldn’t use his fingers. He was surrounded by equipment keeping him alive, but the primitive “fight!” part of his brain was doing great. He’d work until he’d exhaust himself out to get these restraints off, a few minutes at a time, sleep, repeat. One day, he finally achieved success. His sister Marcia was visiting, and we were standing on either side of his bed. Mark started working on his restraints. We gently laughed at the impressive survival response. Then suddenly he got one mitt off. Marcia grabbed one arm, I grabbed the other, and he somehow STILL was able to use his one free hand to pull the other mitt off. He immediately went for his head, which was covered in drains and a ventilator and about 100 stitches holding his skin together. We held, I yelled, and Mark was able to get his hand to his ventilator and begin pulling. He began coughing out clotted blood as the nurses ran in and Marcia and I backed away, frozen, staring at him thrash. Marcia grabbed my arm and said, “Let’s leave. This scene will be burned into your brain. You don’t need to watch this.” I let her lead me out. She was right.
It should not have come as a surprise when I came into his room one day and the nurse told me he had pulled out his PICC line. Mark was awake sometimes could communicate a litte. I asked Mark, “why did you do that?” He said it was an accident. The nurse held out his arms and demonstrated how long a PICC line is. Not an accident. A few days later, I was told that Mark had pulled out his lumbar drain overnight. I was afraid he was going to hurt himself. They added in medications to keep him more sedated.
Once he got downgraded to the neurology unit, Mark maintained the fight position. His baseline in life is not wanting help. With the recent brain surgery, his poor vision, and challenges with balance, the doctors labelled him a fall risk and insisted that he get help getting out of bed. It was unclear if he understood what the call button was, or whether he just refused to use it. One night, I called the nurse’s station to check on Mark. They connected me to Mark’s nurse, who said, “He’s being difficult. In fact, he’s standing in his doorway right now. Sir! Sir! I need you to go back into your room.” I heard Mark mutter “No.” The nurse asked me if I could talk sense into him. I said, “If I could have talked sense into him, we wouldn’t be in this position right now.” The nurse kept me on the phone and I heard him say, “Sir, I’m on the phone with your wife right now and she wants you to go back to bed.” I heard Mark slur out “I’m sure she’d like me to do a lot of things.” I hurried off the phone, and laughed for a long time at Mark’s fiesty spirit. After a few of these incidents, the hospital posted a “sitter” in Mark’s room 24/7 to make sure that Mark stayed put.
For as much as I was terrified that he’d hurt himself, I also could appreciate his desire for autonomy in a situation in which he completely lacked control. Within a couple months, he had gone from a man who happily went to work, took care of a house and a gaggle of kids, paid the bills, andran at lunch time, to a guy who was not allowed to walk into the bathroom alone. I’d rather he fight than give up.