I just got tears in my eyes as I watched a young technician wheel Bo, who was smiling and joking, into the nuclear medicine room to test his kidney function. When asked his name, he immediately said it–first and last, and he was concerned that I stay nearby. He knows my name and that I’m his wife today; in fact, he has known all the time he’s been in the hospital.
The tears were because he’s so trusting and innocent, so willing to please and be pleasant. And I have felt the opposite – frustrated, impatient, irritable, sleep-deprived. Last evening was a real low point. I was with him from 3 until 10 pm. Bo sundowned so intensely that after my seven hours with him, he continued to be agitated through the night with Jon until he finally fell asleep at 5 am, despite the medicine that I had requested in the evening. It had no effect. ( A nurse told me that sundowning is usually worse when patients are in the hospital.)
I will try to describe a brief time with him, but in your mind, multiply it over and over and over (and, I suppose, picture a 3 year old.)
He is sitting in his bed, covered, with an IV in his arm and three hospital wrist bands on his arms. He lifts the sheet, pulls at his hospital gown, pulls at the wrist band, grabs the IV line, (I stop him), he pulls on a gown tie, lifts the sheet, kicks the cover away (I fix it), he asks me when we are going home (I say we’re not), he says he has to go home (I say he can’t); he starts to put his legs over the side to get out of the bed (I stop him and reposition his legs), he needs to go to the bathroom (I take care of all of this and change him), he asks when we’re leaving and I say we’re not; he says he has to leave now; he pulls at his IV (I stop him), then tries to remove the wrist band…………………. and it goes on and on, without pause.
At one point, I actually thought he was settled down, so I put my head back and nodded off. When I awoke — 3 minutes later? — he had wrapped the IV around his hand and arm so many times and entwined it with a cover on his arm that I had to call the nurse to fix it. And it began again. Another time he wouldn’t stop pulling it, and in frustration, I slapped his hand, and the look in his eyes made me feel just horrible and ashamed.
A doctor told Jon this morning that they do no procedures on the weekend. That means that nothing will be done — if anyone can figure out what to do — before Monday. All we are trying to do is find out what to do next and stop the pain (which is not constant.)
Jeremy, the technician, just told me that Bo fell asleep as soon as he began the test, which will take from 30 min to an hour. Maybe we’ll find something out?
I just want to go home.