I typically don't post twice in one week. Part of that is because I don't always have the energy, and sometimes it's because things don't change that quickly. Then sometimes, I get hit in the face by the changes that have been subtle on a daily basis, and my heart wrenches. Today was one of those days.
I had a Care Meeting for Billy today. The social worker, director of nursing, and activity director all met with me. They wanted Billy to join us, and I agreed. The activity director, also named Kathy, went to get him. As she brought him around the corner, I saw him being led by her. He walks so slowly now - like a very old man, and you have to pull him along. His gait seems normal and balance is okay. I have no idea why that has changed. Just part of this lovely disease. It's also hard to get him to sit down. It's a disconnect between his brain and legs, I think. He does finally sit down, but it's a big change from what it was.
The nurse explained to him that we were meeting to make sure he was comfortable and that all things were going well for him. He responded, but it didn't make a lot of sense. When prompted, he says he likes it there. He eats well, and yet he's lost almost 20 pounds since January 24th. We certainly are not concerned about him being too thin because he had some weight to spare, but I do hope his weight loss slows.
The hardest part for me to see is his inability to respond to questions well. The nurse asked him what he taught when he was a teacher, and he looked around for a moment, then he pointed at the table and said something about a green square. I said, "You taught history, and you really liked teaching US history the most." He nodded. And you know what he said...."I still do." A few minutes later, the social worker asked him his birthday. He looked at me, and I waited to see what he would say. He finally said, "Twelve, twelve, twelve." I told him that his birthday is on the twelfth, and I asked him if he knew the month. He thought for a moment and said Julie. I corrected him and confirmed that it is in July. He realized he had said it wrong, and he tried again, but he couldn't get the word July out.
The hardest part of the meeting was signing a DNR for him. I've tried to talk to Billy about this for a few years, and when I knew he could understand, he would say he wanted to think about it. Obviously, he cannot make those decisions for himself now. I feel strongly that if God decides to take him home, I will not stand in the way. I'm in no hurry, and the thought of Billy not being here is too hard to imagine. But in so many ways, he's not here now. His eyes have that far away look, and he knows to respond to questions, but many times he doesn't fully comprehend what he's being asked.
He does make us laugh still - intentionally sometimes. But it's often because he just says what pops in his head. Last week, we were at my sister-in-law's (Jerris') house for a graduation reception to honor my nephew, Cory. He just completed his bachelor's degree and plans to be a band director. Cory has been in DCI for several years in the summer, and we often watch dvds of his performances. Billy had just finished eating, and Jerris asked him if he would like to move to the living room and watch a dvd of Cory marching. Without a moment's hesitation, Billy said, "Not really, but I will." Jerris looked so surprised, and I just had to laugh. I looked at her and said, "no filter." We just had to laugh.