Thursday, June 16, 2011

I once had hobbies, but now I take care of Billy...

I wrote this post yesterday and did not publish it until now. Last night, Billy started complaining about going to the cottage, and I worked to calm him down. He kept saying that they play dominos, and he doesn't like to play them, so he just doesn't want to go. I let it drop last night, hoping that he would let it go. He didn't. This morning he told me repeatedly that he ddin't want to go because he wants to be with me and go to the cottage I attend. He's really been stuck on this lately. He has asked me about the cottage I stay in, and I tell him that I don't stay at a cottage. I go to work at the school. I feel so guilty that I can't handle keeping him with me all day when I have the opportunity. The weekends are difficult, and today I needed to get several things done, so I promised to pick him up early. So much like a child and parent.

He also woke up at 1:40 this morning and took his shower. I was able to get him to come back to bed for a few hours, but he never really went back to sleep, and if Billy ain't sleepin', I ain't sleepin'! When these odd days appear, I try to analyze what all I've done and see if I can do something differenlty. Sometimes, it just seems random. The brain is a remarkable organ, and when it is diseased, it can be a daily surprise as for what will occur.

I wonder what I did with my time before Alzheimer's Disease....caregiving really absorbs a person's time and energy. I have always known that I depended on Billy to do quite a bit around the house. We must have agreed somewhere along the way that he would be in charge of taking out the trash, caring for the lawn, and general home maintenance. And I know I had it good when all I had to do was say, "The trash is about to overflow!" Somewhere in our marriage, he just picked up on those suggestions, and he took care of it. When he first had to retire from teaching, he stayed home by himself, and he was wonderful about doing the laundry, keeping the lawn, and keeping the house straight.

Those days are gone. He gets very confused about the washer and dryer, but he can fold clothes pretty well. He helped with the weed eating last weekend when our son-in-law was doing our yard. I've mentioned before about the trash can issues. He cannot discern the recycle items from trash items, so they get switched frequently. This morning I ran out of time and didn't get our flowers watered. The caretaker was coming to the house, so I asked Billy to water the flowers. I had just asked him to turn off the sprinkler, and he took care of that. So asking for him to water the flowers seemed easy. Not so. He was looking for a big pitcher to water the flowers, and I told him he could just use the water hose. He looked very confused and said he didn't know what to do. I went with him to where he had rolled up the hose, and it still had the sprinkler attached. I told him to take the sprinkler off, and he did. Then I had to tell him to put water on the flowers. He complied, but the steps had to be broken down for him. I was using those darn words again, and they just get lost in his head.

The norm is rapidly changing with Billy...he wants to do things to help me around the house, but many times that leads to something going wrong, and I have to undo that before going on with the original chore. An example is loading and unloading the dishwasher. When I open the dishwasher door, he comes quickly to see if I need help. He started this when we lived with my sister and her family. He felt needed when he did the dishes, and he tried to do them every night. If clean dishes were in the dishwasher, we would mention that they needed to be put away first, and like a magician, his slight of hand would change from unloading to loading, and before we knew it dirty dishes were mixed with the clean. One time is okay, but then we went from once to almost every night. It became a race to see who could get to the dishwasher before Billy, and then who had the fortitude to keep him away until it was done. He just wants to help. This morning while he was in the shower, I stripped the bed because it's a great day to have Catherine help with washing, drying, and putting those back on the bed. After I got out of the shower, I could hear his feet shuffling, and when I opened the bathroom door, there he was putting the pillow cases back on the pillows. I got him stopped before he put the sheets back on.

These are the time consumers. Sometimes he's just trying to tell me something, and he can't get it out, so he takes me to what he's telling me about. The other day he wanted to tell me that my phone was buzzing. He couldn't say "phone," so he took me to it, and picked it up, and said, "This was buzzing." As much as I get frustrated, I cannot imagine how he must feel. Especially a man whose vocabulary could surpass most folks'. As much time as all this takes, I know we aren't even close to the real time consumers. Billy can still groom and dress himself. He's slow, but he gets it done. He can still feed himself; I just have to provide the meal and remind him to eat it. He's losing weight, so I know he forgets to eat some things, and the eating has changed in the last few months. He's still mobile, and I really don't notice issues with his gait at this time. I know he can read because he reads all the road signs to me, especially the speed limit signs. And his brain still processes the words, "Slow down. You're going too fast!" All of these things he CAN still do drain his energy. If we throw in something extra, he's just exhausted afterward. This week we are attending church on Wednesday, Thursday, and Friday evenings for our Summer Spectacular which I refer to as VBS on steroids. (Jonathan, the musical does incorporate some fog machines and interesting spotlights while telling the story of Noah!). It involves LOTS of people and can run a bit long, but he says he wants to go, and as long as he wants to go, I'll take him. As long as he wants to drink Dr. Pepper, he's got it, and if he wants Blue Bell ice cream, I'll serve it to him. Alzheimer's Disease has no cure, and if those things make Billy happy, so be it.


  1. Dear Kathy,
    My heart breaks for you. We watched Mom go through all of this and there is just nothing easy, nothing you can do to help the pieces fit together in their minds. I hate it. I cannot imagine how hard everyday can be. I cannot imagine how weary you must be. I'm praying for you, dear. I know He will sustain you and make a way, even when it seems hopeless. Hang on. I'm hugging you right now. Words feel so useless to help.

  2. Rage on. And keep serving that Dr. Pepper and Blue Bell and Kincaid's and whatever else shows up. Glad to hear fog showed up to help Noah go dove hunting.