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| A happy Billy when he's with family! |
I read a post on Facebook the other day by the wife of an AD victim. She commented that she noticed a difference in him one day, and that generally meant that he would probably go back to his "normal" the next day, but soon the difference becomes the norm. I identified with that statement completely! Billy goes along as usual, and then one day we notice he can't seem to do something he's been doing. The next day he can do it, but eventually (a fews days or weeks) he loses that skill completely. We've seen that with eating, speaking, and his ability to get around. A big challenge right now is getting him into the car. It used to be second nature to him, and he could buckle his seatbelt on his own. Then I started having to pull the seatbelt down for him, and he could do the rest. Now, I buckle him in after I finally get him in the car. He struggles to figure out how to get in. I pat his left leg and tell him to put that leg in first. Then he sort of hops over and gets his left hip in and stops. He's heavy enough I can't scoot him over, and when I tell him to scoot over, he doesn't understand. So, I sort of cram him in....lifting his right leg in and pushing his foot in. He gets in just enough to buckle him and close the door. He sort of leans over toward the console throughout the ride. I have to make certain we have enough room on the passenger side of the car because if it's too tight, it's a no go. He needs a little help getting out of the car, but it's easier than the entrance. I also have to watch him carefully because he has opened the car door several times while I'm driving. Eventually, I will need to put him in the back seat to use the child proof locks unless I can get one on the front passenger door.
No matter how difficult it is to get him in the car, I still enjoy having him with us at church and family gatherings when possible. And he enjoys being with us. A few weeks ago, the evening nurse called to tell me the psychiatric nurse practitioner who sees Billy regularly felt he was taking too much Seroquel. I certainly agreed since he often fell asleep before finishing his lunch. They eliminated his afternoon dose, and he is much more interactive now. That has some drawbacks at times, but overall, it's nice to have him more alert and communicative. Typical of the disease, he has some bad days at times. One day recently he was combative and leaning to the left when he sat and walked, but he definitely has more good days than bad. When I picked him Saturday afternoon, he was reading/ looking at a book, and he looked up and waved as I walked toward him. For quite a while, he's been sitting with his head down when I arrived, so I like that he's more aware of his surroundings.
It's sometimes hard to tell if his behavior changes are related to the disease or the medications. I do remember when his behaviors were so extreme, and I prayed for medication that could help.
As the brain becomes more damaged during Alzheimer's Disease, it affects speech. I remember Billy's mom would use lots of alliterative nonsense words, and Billy does the same. He repeats a syllable or two over and over, and last night, Shelley and I were thankful we were the only ones in our large group who could hear him saying over and over, "fuca-fuca-fuca-faca..." We looked at each other with shock, and then he stopped. Thankfully! He meant nothing bad by it, that sound just came to him. You never know which sound will emerge!
What gives me peace is that Billy does not appear to be in pain, and I believe he is at a point where he does not remember his life before. The most difficult part of this disease for Billy was knowing that he was losing part of himself steadily. He was frustrated and angry, and I was easily exasperated because I didn't know how to help him. He's generally easy to get along with unless someone yells at him or something is bothering him, and he cannot communicate his need. One of the aides is so good with him, and she's definitely my favorite. She works with him to prevent him getting agitated. She takes him to the restroom regularly (luring him with chocolate!), and this prevents him getting wet which in turn leads to agitation. She does a good job of shaving him and getting him dressed. Last night, I could tell that whoever shaved him didn't rinse off the shaving cream, and it was dried and caked in spots. It's the little things that I wish I could do for him, and I can't when I'm not with him. I worry about his teeth. He doesn't remember how to brush and he's not keen on someone brushing them for him, so it doesn't get done the way it should. I guess I have to let that one go, too.
Matt Redman's song speaks to me every time I hear it, and I am so grateful that God never lets go of me, and neither do any of our family and friends.
Matt Redman sings You Never Let Go of Me
Thank you so much for your prayers, your thoughts, your monetary gifts that come just when we really need them, and your love and concern for Billy and our family. We love you dearly.
