Monday, August 15, 2011

Ready or not, the kids are coming

Teachers came back to school yesterday....a sure sign that we'll have students very soon. I love this time of beginnings, positive attitudes (for the most part), and it's great to see everyone after a few months away. I have about 2 weeks off in the summer, so I spend a good bit of time working alone during the summer. It's good to have everyone back on campus and hear the busy-ness in their voices.

As much as I love this time of year, I've allowed some things at work get to me lately, and that's not like me. I can usually go with the flow and let things go, but I've taken something personally that probably isn't. I've spent some time trying to figure out why I'm allowing myself to get so upset about this, and I think it's misplaced anger about this stupid disease. Alzheimer's robs you of your loved one little by little. I can't be angry at Billy because he's not at fault, but I'm angry that he has this disease that has taken my husband as I knew him. We no longer have conversations like married couples have. I'm not sure I can even categorize them as conversations. We talk, but it's usually me trying to figure out what in thunder he's talking about. I simplify what I say to Billy because I don't want to confuse him. I miss talking to Billy about work issues. This whole ordeal that has upset me at school, would have been something I could talk to him about. I enjoyed that we shared the same profession for several years because we could share stories without too much explanation. When something is bothering me, I don't share it with Billy because he isn't able to comprehend some of the issues. I try to keep it simple and direct. Billy's attention span is short - as in seconds long. Unless he's obsessing over something in which case he cannot let it go. Yesterday he was stuck on where his car was because according to him it is actually his mom's car. He asked several times if I thought he should call his mom. I never know how to handle this, and I handle it differently each time. I told him we couldn't call his mom, and he looked at me for a long time. I said, "Your mom is not here anymore." He looked down and said, "Yea, I've just been thinking about her a lot."

I have a rare opportunity to speak as an advocate in a few weeks. Our local chapter of Alzheimer's Association is hosting a Town Hall Meeting regarding the National Alzheimer's Project Act that President Obama signed into action last January. We have the opportunity to be heard by several people who will report back to the Secretary of Health and Human Services. Our caseworker asked me to have a 3-5 minute statement to read. I pray that God will give me the exact words I need to say all that needs to be said about Young Onset AD and the needs of it's victims. One of my goals is to become a true advocate for Young Onset victims. Please pray for me as I pursue this.

Billy seems to be holding steady these days, and that is a blessing. He's sleeping well, eating well, and he does not seem worse. I am makes our lives easier.


  1. Kathy, speaking out is one of THE most important things you can do to raise awareness and there's no doubt in my mind that you will do just fine. I think what your problem will be is how do you explain all you need to in only 3-5 minutes! Good luck and let me know how it goes.

  2. So proud of you Kathy. You are carrying a heavy load at home, school, and now a chance to be an advocate for early onset victims. Praying that God will help you carry the load and use your voice to help many. Hope things are going better at Billy's day care place. You are constantly in my prayers! Love you, Kathy Pinson