Sometimes silence isn't so golden. I met Billy (BJ) Knowles when I was an eighteen year old freshman at Abilene Christian University. My friend, Karen, and I were hanging out in the band hall sort of hoping someone might offer us a ride to the annual band picnic that evening that was held every year at Dr. Traylor's ranch. Billy and his buddy Cy, offered us a ride, along with another freshman girl that I can't remember well. We piled into Cy's car, and Billy Jack never stopped talking and making us laugh on the way to the picnic. For the next two weeks, I ran into Billy Jack (BJ, Billy) anywhere I went on campus. I'm not sure if he was stalking me, or if I was just always on the alert looking for him. He finally asked me out a few weeks later, and he's made me laugh for the last 36 years. Karen, by the way, is my dear friend from high school who lives a half hour away and has placed her husband, George, in assisted living. George has Inclusion Body Myopathy and is on Hospice care. Karen and I have dinner once a month, and we talk non-stop the entire time. Amazing how our lives circle back in ways we never dreamed.
As AD has progressed, Billy has become less talkative, but he has days where he's more animated and almost silly. I like those days because he's happy. In the last week or so, Billy talks less and less. He's calm, and I know that is preferred over the high anxiety, but the quiet is deafening. He answers questions when asked, and he asks where I am if I'm not there, but he doesn't have conversations with me anymore. Shelley has taken it really hard because it's comforting that he talks and knows who we are. It may be his increased medication that has quieted him, and if so, it's a trade-off. Even though he got agitated and anxious, he did express himself. His affect is almost flat right now, and that makes us sad. He's surrounded by other residents with Alzheimer's every day, and it gives us more than a glimpse of his future. We also remember his mother's very long journey with AD. I didn't go to Lexington Place last night because of so much going on at school, and Shelley stayed with him through his dinner. She had a mini breakdown when she got home because she had to help him eat his dinner last night. He struggles with tremors sometimes, and then he's better on some days. All of it seems too much to bear at times, but God gives us strength.
Billy did have a rallying moment this last Saturday in a way that wasn't good. I received a call around 2:30 from the nurse in the unit. He told me that Mr. Billy was out of control, and that he had gotten out of the unit. He gave me a brief account of what had happened and asked if I would speak with Billy. I asked Billy what happened, and he said, "Nothing good." He's not able to retell events, but he can tell me if it was good or bad. He was so upset he couldn't talk to me, and I told the nurse to let him walk around and that I was on my way over. Sabash is the weekend nurse, and he had tried to give Billy Ativan to calm him when he became agitated, but he refused to take it. By the time I arrived about 40 minutes later, he was standing in the hall looking for me. He looked distressed and very relieved to see me. He had finally taken the Ativan about fifteen minutes before I got there, and he was completely calm about half way to our house. I got him showered and dressed for church, and he did well during church. One thing that seems to confuse him is communion that he's taken every week for close to forty years. He puts the small wafer in his mouth, but when the juice comes by, he's confused. Last week, I pointed at my mouth indicating that he was to drink it. He put the cup to my mouth, so I shook my head and touched his lips. He drank it then. After church we went to eat with friends, and he was in good humor, talking and laughing. We had no idea what he was talking about, but it's easy to laugh with someone who seems happy. He really did well until we walked back into the unit, and he saw the nurse. He leaned over to me and said, "I don't like that guy." Why not? "I'll have to tell you later." I don't expect that Billy will tell me why he doesn't like Sabash, and I doubt that he even knows. It's something he feels for some reason. I doubt Sabash has done anything bad to Billy. He probably does things differently than the weekday nurse that Billy spends five days with each week. Routine is so important to him, and he's out of his routine on the weekend. I don't really know.
The brain is intriguing and confusing and in control of everything. It's a fascinating organ, and I love learning about it, but now that Billy's brain is diseased, I'm learning firsthand how much a person's brain determines the quality of his life.
Tonight, Shelley and I spent more time trying to engage him in conversation, and he was better. Some of what he said made sense, and some of it did not. It was so good to see him smile and laugh. In spite of his moment of occasional rebellion and his lack of a filter when he speaks, Billy remains one of the nicest people I know. Our son-in-law dropped by this evening, and as he and Shelley were leaving, Billy looked at Andrew and said, "You look good for a change."