Wednesday, May 23, 2012

Hard to See

I typically don't post twice in one week. Part of that is because I don't always have the energy, and sometimes it's because things don't change that quickly. Then sometimes, I get hit in the face by the changes that have been subtle on a daily basis, and my heart wrenches. Today was one of those days. 

I had a Care Meeting for Billy today. The social worker, director of nursing, and activity director all met with me. They wanted Billy to join us, and I agreed. The activity director, also named Kathy, went to get him. As she brought him around the corner, I saw him being led by her. He walks so slowly now - like a very old man, and you have to pull him along. His gait seems normal and balance is okay. I have no idea why that has changed. Just part of this lovely disease. It's also hard to get him to sit down. It's a disconnect between his brain and legs, I think. He does finally sit down, but it's a big change from what it was. 

The nurse explained to him that we were meeting to make sure he was comfortable and that all things were going well for him. He responded, but it didn't make a lot of sense. When prompted, he says he likes it there. He eats well, and yet he's lost almost 20 pounds since January 24th. We certainly are not concerned about him being too thin because he had some weight to spare, but I do hope his weight loss slows. 

The hardest part for me to see is his inability to respond to questions well. The nurse asked him what he taught when he was a teacher, and he looked around for a moment, then he pointed at the table and said something about a green square. I said, "You taught history, and you really liked teaching US history the most." He nodded. And you know what he said...."I still do." A few minutes later, the social worker asked him his birthday. He looked at me, and I waited to see what he would say. He finally said, "Twelve, twelve, twelve." I told him that his birthday is on the twelfth, and I asked him if he knew the month. He thought for a moment and said Julie. I corrected him and confirmed that it is in July. He realized he had said it wrong, and he tried again, but he couldn't get the word July out. 

The hardest part of the meeting was signing a DNR for him. I've tried to talk to Billy about this for a few years, and when I knew he could understand, he would say he wanted to think about it. Obviously, he cannot make those decisions for himself now. I feel strongly that if God decides to take him home, I will not stand in the way. I'm in no hurry, and the thought of Billy not being here is too hard to imagine. But in so many ways, he's not here now. His eyes have that far away look, and he knows to respond to questions, but many times he doesn't fully comprehend what he's being asked.

He does make us laugh still - intentionally sometimes. But it's often because he just says what pops in his head. Last week, we were at my sister-in-law's (Jerris') house for a graduation reception to honor my nephew, Cory. He just completed his bachelor's degree and plans to be a band director. Cory has been in DCI for several years in the summer, and we often watch dvds of his performances. Billy had just finished eating, and Jerris asked him if he would like to move to the living room and watch a dvd of Cory marching. Without a moment's hesitation, Billy said, "Not really, but I will." Jerris looked so surprised, and I just had to laugh. I looked at her and said, "no filter." We just had to laugh. 


  1. Oh Kathy,
    My heart breaks again for you and Billy. I am so very sorry. This disease forces us to die a slow death, doesn't it? We grieve each stage as another layer of their identity slips away. Even when their brain no longer forms the words, even when it cannot tell the legs to bend, even when recognition fades, their spirit--who they really are--is still the same. I really believe that their spirits still know us, still know
    themselves. It may not be able to use their body to connect with us, but their spirits still do. Who Billy really is is still there, and always will be. My mom's spirit, the essence of her, was immune to Alzheimer's. Our spirits still knew one another even when her mind no longer knew me.I don't know if that makes sense, but it was such a comfort to me, watching her slip away. I love you both. May you feel His Arms wrapped around you every moment of every day, knowing He is also holding Billy very close to His Heart.

    1. Anne, I agree with you. When Billy's mom was in the end stages, she knew when he or his sister were beside her holding her hand or feeding her. She didn't make eye contact, but you knew that they were connected. I believe Billy's spirit is still able to shine through. As always, Anne, your words comfort me a great deal. Thank you for your prayers, your love, and your support.

  2. It may sound strange to say I enjoyed reading this, but my father has alzheimer's and I am on a similar journey although his was not early onset. Blessings to you.

  3. So much of what you say is so familiar. This hideous disease robs our loved ones and us little by little in such a painful way!!
    You're right, sometimes we have to laugh....
    Keeping you in my thoughts and prayers.

    1. Delores, I keep up with your husband's condition, and I know you are going through some rough times. You remain steadfast in thanking God for what you have and have shared with David. You are an inspiration to many, and I appreciate your sharing. Thank you for your thoughts and prayers, and please know that I do the same for you. Alzheimer's Disease stinks!

  4. Thanks Kathy for sharing your don't know how helpful it is for me. Since you are a little farther ahead in this journey, you sharing your experiences do help me out!!!! Did you know my Curt was a high school social studies teacher also?!?! It is so hard to watch them just slip away isn't it!! I sometimes have trouble remembering what Curt was like before Alz hit! Hey do you have facebook...maybe I already asked you that...can't remember, but it would be nice to chat more! :)