Thursday, March 24, 2011

Data Driven

I was not born a natural analyzer of data, but I have learned to collect and analyze data, write action plans, and implement those plans. It's a big part of my job and has been since testing became a huge part of education in Texas. I know that data can be skewed and manipulated, and many organizations have been guilty of that from time to time. But I also know it's hard to deny some of the hard facts of data. The report I've linked at the bottom of this post is sobering when it comes to the data regarding Alzheimer's Disease.

The figures that should be surrounded by flashing lights are:

Alzheimer's is the sixth leading cause of death.

Of the top ten causes of death, Alzheimer's is the only one that cannot be prevented, cured, and probably not slowed (although some drugs claim to slow the effects of the disease).
The graph at the beginning of this post shows the drastic increase in deaths from AD, while the others listed have declined. Why the difference? Partly because of lack of funding for research. Without funding researchers are unable to spend enough time and money to determine what causes Alzheimer's Disease. We have a clear picture of what AD does to the brain - it makes it disappear piece by piece. It causes literal holes in the brain, and the plaques and tangles are formed instead of synapses being formed.
I witness my mother-in-law go from a strong vibrant woman who raised three kids on her own to a frail little lady who couldn't speak, walk, make eye contact, hold a hand, dress or feed herself. She lived a long time with the disease because her body was strong. She passed away at 81, and although it was hard to say goodbye, it was a blessing that she could become whole again in Heaven.
Now I watch my husband go from a strong, intelligent man who cracked me up daily with his wit to a young boy in a man's body. He is often confused; he has delusional ideas and episodes; he struggles to follow the plot of a television show. He used to spend hours reading articles on the computer and taking quizzes for fun. I haven't seen him touch a computer in months because he doesn't remember how to start it or maneuver around it. He no longer works crossword puzzles. He still has a great vocabulary, but the words come sporadically, and he has more and more issue with finding his words. Some days he asks about him mom as though she still lives, and sometimes he remembers that she has passed. If he finds he doesn't want to do something (like go shopping with me), he starts complaining about a stomach ache. It seems to be an excuse to leave and go home, but maybe he really has a stomach ache. I don't know, but it often disappears when we get back home, and he relaxes. I am thankful that he can still relax somewhat. The doctor has increased his dosage of meds for anxiety, and we need to give it some time to work. I'm praying it works, and he can stay with it. Please pray for more funding for Alzheimer's research and for those who suffer from this disease.

Monday, March 21, 2011

Back to the Real World

It's back to the real world for me...whatever that may be. Spring Break has ended, so I'm back at work and Billy is at the Cottage. I wrote in my last post that our trip to Midland would be a guage to see how well Billy can travel. He did really well, and I'm so thankful. Our daughter, Shelley, went with us, so I had a lot of help driving. Billy's anxiety was controlled enough that he didn't seem to fret unreasonably the entire way. His perception of time has changed drastically, and he thought the trip from Fort Worth to Midland would take about three hours when it was actually closer to five. He "helps" with navigation all the time, and I handle it pretty well, but I wasn't at all certain about him helping Shelley, but he was calmer and she was more patient. As it turned out, we all had a wonderful time staying with good friends, and we had a mini-reunion of about 10 great friends from our "old" Care Group that met weekly for years. Billy was comfortable and seemed to genuinely enjoy the visit. Thank you to the Futrells for opening their home to everyone.

I'm still trying to comprehend the donations we've received from so many great people. THANK Y OU! Those words seem so small compared to my gratitude, but I would rather say that than nothing. I've written many notes lately, and they are being mailed today. I hope they convey our appreciation. I did tell Billy about the donations and how they came about. He was very touched and teared up about it. In true AD fashion, though, he didn't remember it. On our way to Midland, he asked me if we had enough money to buy gas and get back home. I assured him we could handle the cost of the gas to get home, even at $3.45 a gallon! I do know he has some comprehension of the goodness of all these people, though. Because he is never far away from me, he wanted to know why I was writing all these notes lately. I told him they were "thank you" notes, and he looked puzzled for a moment, then said...."For that thing Jonathan did?" Yes, that thing that Jonathan, Debra, Don, and so many others did.

Friday, March 11, 2011

I must share something good....really much better than good....something I'm still struggling to comprehend. I met our good friends Jonathan and Debra for lunch last Monday, so they could share with me a "little" something they had worked on to show their support for Billy as he changes daily in the throes of Alzheimer's Disease. Some of you reading this may have been a part of their plan, and I am most grateful to you. It seems that Jonathan contacted several people who knew Billy from many years ago when we were in college, and they were able to contact many more people that Billy knew from college, and upon learning of Billy's disease, many of them who care about Billy sent donations to us.

To say that I was surprised by this gesture would be an understatement, and the generosity of these angels amazes me. I am humbled, grateful, and so honored that these gifts were given for Billy. I've shared through previous posts that we live with my sister and her family, so I can afford the daycare for Billy. These generous gifts allow me to get caught up on what I've owed for the daycare (the owners of the daycare have been so generous in allowing me to pay them slowly), catch up on some other bills, and have a little reserve in case of an emergency. Oh, and I can get my windshield replaced - something I've put off for over a year because it's another $200 I just couldn't pay. I pray for wisdom in the stewardship of these gifts.

I know why so many care about Billy - for the same reasons I love him. Billy was a funny, friendly, outgoing young man in college. He was active in band, club, and all things social. His grades could have been much better, but his first priority was to have a good time with his friends. His sense of humor and personality were what attracted me to him. He always had a sharp wit and could entertain an entire room of people. I really miss that Billy, but we sometimes get a glimpse of the old Billy when we least expect it. We were at church on Saturday night, and during the "hug and howdy" time, Billy turned around to meet the group behind us. One woman introduced herself as Carol from Indiana, and without missing a beat, Billy said, "That's okay. We'll talk real slow for you." That's the Billy Jack we've all known for years, and we rarely see him these days. He's always had a way of endearing people to him, and he still does. He is truly loved by everyone at his daycare.

Tomorrow Billy, Shelly, and I will take a short trip to visit good friends in Midland. Billy and Shelley have not been back to Midland since Andrew's memorial service in June of 2007. I have been back once to teach a staff development session in 2008. This trip will serve more than one purpose. Although the main reason we are going is to visit friends we've not seen in too long, I am also using this gauge how well Billy can travel. We made a short trip to Stephenville a few months ago, and Billy's anxiety was high the entire time. He worried that I was going the wrong way and wanted me to stop at every gas station along the way - just to ask for directions. I refused, and that caused him more consternation. He was so surprised when we pulled up in front of the Hooper's house. That trip was less than two hours, and Midland is at least five hours away, so prayers are requested. If we can make this trip without too much anxiety, I'm hoping to make a more memorable trip with Billy this coming summer. The most fun we ever had on a trip was a cruise we took four years ago. As quality life slips away from Billy, enjoying time together is a top priority.

Today was a good day for Billy, and he was less anxious than usual. The picture above is from today. My parents came in town, so we could all celebrate my mom's birthday together, and I anticpated that Billy might struggle more because of the lack of routine for him. We gathered everyone in three cars and caravaned to Forest Park in Fort Worth for a picnic. I lead the cravan, and I really didn't know where I was headed, but we found a wonderful place that wasn't crowded. Billy handled the drive pretty well, especially since he had no idea where we were going. We enjoyed a picnic, and then we all took a ride on the mini-train that has run through Forest Park for over 50 years. This was my mom's birthday wish - a picnic in the park where she had picnics as a child. We had a blast, and Billy really enjoyed himself. Shelley and I had a chance to talk about why he had a good day, and we finally decided it was because we were all together, and he felt secure. We'll take that anytime we can get it.

Sunday, March 6, 2011

He Never Let's Go of Me

Overall, I would give this past weekend 3 stars out of 5...pretty big events (except for the command presence of principals at the first ever Battle of the Bands at the stadium on Saturday night when the temperature was unseasonably cold and windy) huge stressors...just rather ordinary. Shelley and Andrew decided to spend Saturday night and Sunday at Andrew's parents in Weatherford, so we had doggie duty. Bailey, the sweetest dog in the world, is pretty low maintenance and never has accidents in the house, so we go by the kids' apartment to take her out around 8:30 on Saturday night, leave her with food and water, and then we show up around 9:30 to the next morning to take her out. That's a really long time for her to be without a potty break, but she's a champ. Other than doggie duty, the weekend was calm. One event did stand out this weekend, and as small as it is, it's implications are larger.

I notice subtle changes in Billy's behavior, and how he handles things that have been routine for most of his life. We go to church on Saturday evening, and because Billy worries so much about being on time, we usually arrive early. There is a man in charge of finding other men to serve communion for each section of the auditorium during this service, and since we are often early, he frequently asks Billy, and as much as I hope Billy was say no, he rarely turns him down. My stomach knots up each time, and I know I will need to remind him when the time comes. I know it's a small thing, but serving communion really does require some attention to detail that Billy lacks. One of the details is that the servers for every section begin at the front of that section and work their way to the back. Unless you are paired with Billy, who often forgets that. The other guy heads to the front of the section, and Billy starts at the back. This creates confusion at the end of each row because no one is there to pick up the tray and take it to the next row. The "other guy" usually picks up that slack, and they meet in the middle.

Last night, I knew we had to leave the service early, so when the man who finds the servers came to ask Billy, I reminded him we had to leave early. He turned down the request, and I felt a big relief. We ended up staying for the entire communion which is followed by a collection of the contribution. Communion went well, and at the beginning of that Billy had pulled out some cash from his wallet. He held on to it, so he would be ready for the collection plate which was being passed around by a young teen. Since Billy sat at the end of the pew, the young man tried to hand the plate to Billy who started motioning that we didn't need it and pointing to the other end of the aisle. I was reaching for the plate, so the young man was really confused, and Billy was insisting he take away the plate. I finally told Billy to take the plate which he did, and then I had to tell him to put the money into it. As soon as he put the money in, he had a moment of realizing what he had done, and he was embarrassed about it. He apologized to me several times, and I tried to act as though it was no big deal. But it was really a very big deal - something he has done for most of his life (placing money in the collection plate) confused him for a moment.

As this disease progresses, the brain is affected in different areas, and while we first noticed a change in short term memory, we now see it attacking long term memory, routines that have been in place for decades, muscle memory, and eventually it will attack every last bit of function in his body. It will take many years for that to happen, and I don't want it to speed up, but it makes for a very long goodbye. That's why it's so important to appreciate every thing we have today. I often complain (sometimes just in my head) about Billy's constant questions to me, but a day will come when Billy can't use language to communicate. He shadows me most of the time we are together, and I mean he follows me from room to room. I lock the door when I go to the restroom, so I can have a few minutes of privacy. Otherwise, he comes in to ask questions. But the time will come when he cannot follow me, and he won't be able to walk. I was sharing with a counselor recently that his balance has not been affected that I notice, and she said, "It will happen. He won't be able to handle the stairs at some point."

Living in the present has become my way of life. Even though I must plan for the future, I can't dwell on all the things that will happen. God does not let go of me. The first time I heard the song Oh, No, You Never Let Go by Matt Redman, was just after my brother had died, and it hit home. Through all the highs and lows, God is steadfast. He never lets go of me, and he never lets go of Billy.

Friday, March 4, 2011

Hello, Friday!

I believe my last post was also the last day that Billy slept until our alarm sounded at 4:45a.m. I've heard so many stories about how Ambien helps people sleep, and maybe it's doing the best it will with Billy, but his brain has decided that wake up time is 3:30 each morning. He goes to sleep between 10:30 and 11:00, and by 3:30, he's awake. He takes his shower and then starts telling me it's time to get up. There is no convincing him that it is not time to rise and shine. This morning was no exception, and he was particularly irritated with me because he was trying to make the bed, and my presence was preventing the completion of that task. He finally came over to my side of the bed and told me it would certainly help him if I would get up. I told him I just needed 30 more minutes until 4:30. He was really angry and sat at the foot of the bed tapping his foot. I did finally get up before 4:30, and I took my time getting ready since I knew we didn't need to leave the house before 6:00. We left at 5:35, filled up with gasoline, got coffee, and still arrived at our meeting place for the caretaker 20 minutes early.

I remember when our kids were newborns, and we felt like five hours of sleep in a row counted as all night. We were much younger then, and I need a minimum of six hours now - 3:30 seems like the middle of the night. Tomorrow is Saturday, and when he wakes up at 3:30, I'm hoping to persuade him that we can stay in bed at least until 7:00. Here's hoping.

Fortunately, in spite of his lack of sleep, Billy has had a pretty good week. I'm most thankful because the week has kicked me around. The budget issues we are having in Texas schools have trickled down to my level, and I had the less than desirable duty of informing special education teachers and aides that some of them may not be back for next year. For the most part, these are people I've hired - people who share my philosophy and care deeply for the kids they serve. Many of them have been there for at least three years, and I can't think of these cuts as positions - they are people. This is the first round of budget cuts, and if we don't get funding from the state and pass a tax ratification election, we have a second round that will cut much more deeply than these have. Our budget shortfall is somewhere between $15 and $38 million, and our total budget is only around $240 million. Our students will be the victims if we have the more severe budget slashing - more kids in classes, fewer - if any - GT specialists, no fine arts classes or athletics for children of poverty because they can't pay to play. If the Rainy Day Fund is for crises, I believe this situation qualifies.

I miss being able to talk to Billy about my job. I was talking about it yesterday after we got home and got settled. Billy usually asks me over and over how my day was. It's easy just to say it was fine, but I decided to tell him the events of the day. He looked a little puzzled and said, "So, I'm going to be okay?" He was asking me if he would still have his job as a teacher with all the budget cuts. I almost reminded him that he has retired from teaching, but instead, I told him he would be fine. Today he wore his Keller High Indians shirt to the Cottage because it was Friday, and on Fridays you get to wear jeans and your spirit shirt. Sometimes, I don't know whether to laugh or cry.