Sunday, March 1, 2009

Quadrapelgic for Life

“Do you have any sensation in your body?” I ask. Mr. Murphy is a little annoyed by the question. Does his nurse not know anything about him? “I am a Quad,” he mouths (he is on a ventilator, so he cannot speak). “I know that,” I say, “Some quads have sensation.” This is apparently a new piece of information for Mr. Murphy and he pauses, pleased, to chew on the new bit of knowledge. ‘What would that be like? Would it be better or worse?’ I imagine he was thinking like that.

Mr. Murphy was a patient that other nurses tried to avoid. Unlike most ICU patients, he was very sharp mentally. His situation was so frustrating to him that it had driven him to the edge of madness. When you took care of him, his lips would run a mile a minute as he told you urgently whatever was on his mind and especially what he wanted you to be doing. You could not understand any of it, and I think the other nurses found this disconcerting. He would generally ignore requests for yes or no answers, so you were left to try to figure it all out on your own. Every move you made seemed to increase his frustration.

I stopped him and told him that I wanted to do what he wanted, but could not follow him at all. In this way, I extracted a few begrudging yes’s and no’s. When he found me responsive to these, he slowed down a little and I was able to catch a few words here and there.

He wanted a speech valve for his trach so that he could talk. I told him that valves only worked for patients who are not on ventilators. He insisted emphatically that that was not the case and that he had had one before. I agreed to call speech therapy. The answer came back as I expected – no such thing existed. I told Mr. Murphy. “Thanks for trying,” he mouthed.

He could not even talk. He was helpless. He could only feel his head, and on the back of his head was a large bed sore which had just been cleaned and debrided. A white circular area the size of a yarmuka (about 5 inches in diameter) was his skull. This was the result of neglect.

Mr. Murphy was the poster child for “I would not want to live like that,” but he did not seem to know it. He did not ask for death and he did not seem interested in it (not that I asked). While I still think that, in similar circumstances, I would want to be allowed to go, I did not feel the emotional resistance in myself that one often feels when taking care of hopeless cases. Mr. Murphy was psychologically intact, and I guess this made all the difference.

As the shift went on, I took opportunities to talk with him. I could not catch every word, but sometimes I could get enough to follow what he was saying. I tried not to ask him to repeat himself too much.

How had he been injured? He had had a minor neck surgery and had fallen just afterwards. I asked about the specialty hospital where he stayed when he was not in critical care. He shuddered, “A horrible place.” He told me something more about it, but I could not follow. Something about the people there not caring I think. From other sources I heard that his sister had tried to care for him at home and that the ulcer on his head was from that time.

I asked him what his work had been. He had worked in corrections as some kind of counselor. Did he like it? “Yes. I was good at it,” his silent words were full of feeling and memory.

As I excused myself, he thanked me, “It is not often….” I could not catch the rest although I have a pretty good idea sadly.

Mr. Murphy’s sister arrived in the afternoon. They were clearly close. I gave them privacy as they talked for an hour or so. What a difference it makes to have someone who loves you in your life.