No sainthood here

I lost my temper at Richard yesterday. Which makes it very clear that I’m not the Queen of Patience. Nor will I ever qualify for sainthood.

I had rushed directly to the ICU at six-thirty am without stopping for breakfast, driven by a strong sense that I needed to be there. I found Richard lying on his back as per orders from his neurosurgery team, but not peacefully, the way I had left him the night before. He was uncovered, staring at the ceiling, hands moving restlessly. He didn’t notice me.

I touched him gently, “‘Morning, Love.”

“I’ve been calling my nurse and she’s not responding,” he said, his voice frantic.

I looked for the call button. It wasn’t lit. “Did you use the call button?”

“I couldn’t find it! I can’t see it without being able to raise my head!” His voice rose. I stayed calm, figured out what he wanted, got his nurse, and we sorted things out.

Still, I was unnerved. When I had left the night before, he had been his usual self, gracious and cooperative. His nurse reported he’d been confused and panicky several times in the night. She thought the issue was y the steroids he’s been given to keep his brain from swelling, plus the effect of lying on his back, unable to see and re-orient himself to the world around him.

When the neurosurgery team stopped by, we talked about it. They decided that the fluid draining from his brain had slowed enough that he could begin sitting up, which would likely help the confusion, and they’d start decreasing the steriod doses. They cautioned him to not to get up and walk around unless the drain was turned off, or the pressure might cause his brain to start bleeding again, which could be catastrophic.

He nodded. I headed off to a nearby coffeehouse for breakfast and wifi time.


When I got back to the ICU, he was sitting up in the easy chair next to the bed, very Swami-like with his turban of gauze around his head. He seemed himself again.

I opened my laptop to show him something and when I looked up, he was standing up, walking to the bed. Bright scarlet blood flooded his drain tube. My heart raced.

“You can’t stand up with the drain turned on!” I got him seated, got his nurse, and together we assessed the damage. The blood flow slowed, and I let out the breath I hadn’t realized I was holding. 

His nurse went over the rules again. First he said he had thought the drain was off. He added that in his opinion it couldn’t hurt to just stand up for a moment. No standing up period, she said firmly, not unless you call me first so I can shut the drain off. Then we should leave it turned off, he said. No, she said, it needs to be draining the fluid from your brain. Then she left.

I told him he’d scared us, and he didn’t seem concerned, which made me mad. I yelled at my drug-addled, less-than-two-days out of surgery love, keeping my voice down but not troubling to disguise the anger. He needed to pull it together to be cooperative, I said. This was serious, not some rule to weasel around. I showed him the blood that had collected in his drain, just from that one moment of standing up.

I looked at him and asked, “Do you want to recover?” Yes, he said. “Then cooperate, you idiot!” I left to take a walk and cool down.

When I returned, his nurse and I talked to the neurology team what had happened. They postponed removing the drain, which meant he had to remain in ICU another night.

I feel terrible about losing my temper, and “tattling” on him to his team. I love him, and usually that helps me take on this unasked-for responsibility for his caregiving and care management graciously.

Yesterday my fear for his life, and the hopelessness at knowing I can’t watch him every second sharpened my tongue and snapped my patience. In that moment, I wished fervently that the “someone” he depends on to oversee his care was anyone but me.


Friday morning update: I wrote this post last night, and just as I finished it, my wifi connection died. So I had a chance to read what I’d written to Richard this morning. He’s much better today, and if the CT scan he’s getting now looks good, the drain will come out today. Then with a bit of luck he’ll be moved to a bed in the palliative care unit on Five South, a quieter, more homelike environment than the busy, sometimes crowded regular ward.