I started this post several days ago, and I've added to it three times. The only time I have to write is after life settles down - usually after 9:00. I've fallen asleep each time I've tried to write this week. Now that Friday night has finally arrived, I have my second wind, and I'm determined to complete this post.
Last Sunday morning we were on our way to church when Billy made a statement out of the blue..."You know how we were talking about you putting me in a nursing home?" The impetus for this statement came from a conversation we had the Friday before. I actually had driven by an assisted living place that has a day stay program. I have no intention of putting Billy in a nursing home right now. It's not an appropriate place for him because he is not at that level of decline. But when I drove him by Autumn Leaves to see it, it had the LOOK of a nursing home, and he jumped on it. The Rose Cottage looks nothing like a nursing home, and that's a big plus for Billy's acceptance. As we talked more about Billy's statement, I was amazed at his clarity and ability to articulate his feelings. The light switch was on, and it's been dimming for quite some time.
I have to admit it freaked me out a little. It was much like talking to the "old" Billy. For several years, I've attempted to get Billy to talk about his disease. He would not. He would say things like, "There's not much to say." I wanted him to tell me how he felt, what he wanted me to do in the future when he couldn't make decisions, etc. No way. He clammed up every time. On Sunday, he couldn't say enough about it. He told me he doesn't want to go to a nursing home, and as much as I tried to reassure him, it didn't ease his mind. I also will not tell him that I will NEVER place him in a facility; I don't want to make promises I can't keep. and I don't know if I can take care of his every need every day. He said he thought he should see a doctor about his disease. I reminded him that he sees a doctor every three months or more. Could he go to a hospital and get better, he asked. Sadly, no. I told him that I've taken him to three doctors - a neurologist, a psychiatrist, and a geriatric specialist. They have all found the same thing....he has Early Onset Alzheimer's.
He's said more about Alzheimer's Disease in these last week than he's said at all in the last four years. He's asked repeatedly how long he has to live. We do not know, and I remind him often that his mom lived a really long time. Nothing I say seems to ease his mind, and he tells me he's scared....of dying, of not dying, of being helpless. Even though his cognitive ability has declined significantly, he does know that Alzheimer's Disease is fatal. Unless you die from a secondary disease or issue, Alzheimer's ultimately takes your life, and you dignity, and when you're young, it takes your livelihood, your ability to read, to converse, to walk, to eat. I hope he doesn't have the ability to remember all of what his mom went through.
During his moment of clarity, he remembered and he understood. As the week went on, he continued to worry and talk about his "diagnosis," but the clarity is gone. Each morning this week, he's asked where our mother is, or where my mom and his mom are. I tell him they are already gone, and that seems to satisfy him, as though they've gone to work.
He was very down and depressed on Wednesday at the Cottage. The nurse noticed, and she talked with him about it. He told her he had received a really bad diagnosis, and he didn't have long to live. He mentioned his mom to her , and she reminded him that his mom had passed away a few years ago. That made him very angry because his mom had taken him to the cottage that morning. Another nurse redirected him and got him and everyone else involved in playing ring toss, and he was much better.
I have determined that if and when he has another moment of clarity, I'll ask him as many questions as I can. His phantom girlfriend talk has taken a backseat to the other issues on his mind this week, and I don't mind that. But I do mind that he is sad. When his mom was alive, she reached a point where I felt that she was neither happy nor sad, and no emotion seemed better than anger and fear and unhappiness. If I look for the positive in this, and it takes some real searching, I can say that as his speech begins to fail, I listen to him more carefully. He seems compelled to tell his family how much he loves them, and there is nothing bad about that. He showers me with compliments, and I believe he truly feels that I am the most beautiful woman in the room. Shelley picked him up on Thursday, and he told her what a great daughter she is. She needed to hear that, and I'm thankful he found those words.