Part 2 - I Don't Know What's Happening

Continued from Part 1

By the time my middle sister and I got to the hospital, Dad was off the ventilator and was talking, eating, and joking around.  In fact, when she and I entered his room in the Neuro-ICU, he “punked” us by pretending that he didn’t recognize us.  After seeing the look of panic on our faces, our mom "busted him" pretty quickly, but he got a good chuckle out of his little prank, which was so “him.”

At first glance, he looked and sounded like his usual self, lying in the hospital bed, until he said or did something that made it clear that he wasn’t.  For example, he didn’t notice anything or anyone on his left side, and his short-term memory was impaired.  He was aware that he was in the hospital but kept forgetting why he was there; most of the time, he thought it was because he had had a wreck on his bike.

My middle sister and I spent the night there that night; because he was awake and talkative, the nurses made an exception to the rules of the ICU and let us stay in the room with him overnight.  It was really cold in his room, and the chairs in there were uncomfortable, but we were grateful for the privilege of getting to be with him, in more than one sense.  

I had brought a spiral notebook with me to the hospital, and we began taking careful notes about what Dad said or did, what the staff said or did, and thoughts and questions we had about what was going on.  

Dad said that he had a headache (which he thought was because of a bike wreck), and so he was given pain medication, which the nurse said would put him to sleep.  However, in what became a consistent pattern over the course of the next ten weeks, this did not happen - his headache didn't really get better and he didn't really sleep.  Dad dozed off and on all night, never for more than about twenty minutes at a time, and, while he was asleep, he was talking, worrying, and moving around restlessly in the bed.  

What he said during his bouts of sleep reflected more of what was going on inside his head than his appearance and his daytime conversation did at the time; he repeatedly said, “I don’t feel good” and “My head hurts,” both of which made sense to us and to the medical staff because we knew about the mass in his head.  What was more disturbing to us was when he said things that we couldn't explain, like “I don’t have my stuff, and I don’t know what’s happening,” “I’m not ready to go,” and “I don’t even know where I’m going.”  Rather than reading too much into those words, we just recorded them in our notebook.  We focused on taking care of him and on getting the things he needed, like more medicine and more pillows, adjusting the lights, and reassuring him that we were right there with him and that we would take care of him.  

We also noted the names and other details about the staff members who provided care for Dad in our notebook.  We knew that we would be tag-teaming to be at the hospital with Dad, and we wanted to be sure we had good communication amongst ourselves to keep up with everything from medications, complaints and comments from Dad, information from the medical staff, vital signs, and questions to which we wanted to find out the answers.

A bonus feature of the notebook was that it afforded us the opportunity to get our frustration out on paper when necessary; we were trying to fly low as visitors in the ICU so we would continue to be allowed to stay with Dad around the clock.  My middle sister wrote that Dad’s nurse that first night we were there was “loud and annoying,” but we were cordial to her as we knew we were at her mercy and, even more importantly, so was Dad.   Dad, of course, was friendly to everyone who entered his ICU room, from the custodial staff ("Thank you so much!  This is such a nice room!" he said to the woman who came in the sweep daily.) to the nurses ("Great job on that IV!" he said to one, after she had to stick him four times.)  to the Big Wig Doctors who came by ("Nice tie!" he told the neurosurgeon.).  We followed his lead; we were depending on the nursing staff not only to provide good medical care for Dad and to bend the rules to allow us to stay with him but also to fill us in on The Real Facts about tumor resection, brain cancer, the medications he was on, and the doctors, who flurried in and out of the room a random pattern at all hours of the day and night.  We knew that these nurses were our lifelines, and we planned to use as much honey as was necessary to keep in their good graces for Dad’s sake for the duration.

The story continues … Part 3 - Whew! I Need a Vacation!