I'm not a fan of catch phrases, and I make an effort not to use them, but the title of this post says it well. I've not written in a few weeks for several reasons. Mostly, I've been too busy and too tired to write coherently when I finally have the time to write. I've also hesitated to write because I haven't felt particularly positive lately, and I truly want to be positive. And finally, I've struggled with articulating the reality of this disease...thinking that maybe if I just didn't put it in black and white, it might not be real. But, I need to face the reality that this disease is marching on...in spite of my trying not to see the decline in Billy.
One of the many blessings I've received lately is to become reconnected with one of my good friends from high school and college. Karen and I met when we were silly freshman girls in high school. Her dad was our preacher in the church we attended, and we were good friends throughout high school. We attended the same university and even roomed together for a semester. After we graduated and went our separate ways, we sort of lost touch. I knew she lived in this area, and we ran into each other several years ago at a Texas Rangers game, but we didn't really reconnect until Facebook made that so easy. Karen read one of my blog posts one evening, and sent me a message saying it was like reading what she had been going through the past few years. She had just placed her husband of 25 years in an assisted living facility. We meet once a month for dinner and as much conversation as we can fit in. Somehow it helps to know that she has been through these same issues, and she's still sane. We were talking about the similarities of caring for a person with dementia and caring for a toddler. With Alzheimer's, the skills just go in reverse, and like a toddler, you really can't let that person out of your sight. Of course the big difference is that you teach your toddler, and eventually, they learn more and more. The total opposite occurs with Alzheimer's...learning does not occur. I used to compare living with Billy to the Adam Sandler movie, 50 First Dates, but that doesn't ring so true anymore. It's not the same each day. I realize that what he could do yesterday, he may not have a clue about today.
We have a habit of eating dinner on our TV trays, and when I clean up the trays, Billy usually has lots of crumbs under his tray and chair. This evening, he wanted to help clean it up. I got the broom and dustpan, and he swept up the crumbs. He got most of the crumbs into the dustpan, and then he just dumped them out on the floor again. He struggled and struggled to get those crumbs on the dustpan, and I asked it I could help him. He was very quick to hand over the equipment, and I got it done. On the other hand, I was so surprised a few minutes later when he realized the trash needed to be taken out, and he did that. He also remembered where the liners were, got one, and put it in the can. That amazed me because he rarely remembers where the liners are even though they remain in the same place.
The biggest decline we see right now is Billy's anxiety and his lack of coping skills. He's very quiet in the morning when I'm taking him to meet Terry, but if we go anywhere in the evening, he's nervous and irritable. The drivers who bring him home in the evenings mention how nervous he is and how often he tells them how to get to his house. Sadly, he doesn't always know how to get to our house. He argues about the direction I'm driving sometimes, and he tells me I should have turned before. He warns me about stop signs about 2 blocks before I get to them. He grabs the handle above the side window, and he tells me to slow down. I'm really not that bad, but everything seems to be magnified to him. My son-in-law is the most patient of all of us with Billy telling him he's going the wrong way, and giving him incorrect directions throughout any drive. My daughter is the least patient, and I'm somewhere in between.
About half (maybe less than that) of what he says is coherent and makes sense. It may not fit into the current conversation, but it makes some sense. The rest of what he says does not make sense. He puts real words together, but we don't know what he's saying. If he laughs, we laugh with him. He often repeats the last word in his sentence as though it's just part of the cadence. "I didn't want to go there anyway anyway."
I fixed him a snack tonight, and he gave me a side hug and told me that I'm a great sister. Sometimes, in the evening, he'll look at me from across the room, and ask, "Where's Kathy?" I usually tell him that I am Kathy, and he'll act like he meant the other Kathy - he has a sister named Kathy.
Even though I've become accustomed to the madness, sometimes I hardly remember life before the Twilight Zone. Those days when we had husband-wife conversations seem so long ago. I miss having him as my partner and companion to laugh with and to just talk with.
So that is the reality at the moment. We will go to his sister's, Cindy's, on Christmas Eve, and he'll see his family that he sees once a year. That should be interesting. Christmas day will be spent with my family, and I plan to break up the day by coming home for a few hours. I'll write about the holiday celebrations soon....praying for an unusually calm Billy on those days.
Peace and blessings to all this season.