Friday, April 1, 2011

Alzheimer's Symposium

I took off from work yesterday to attend the annual Alzheimer's Symposium that the Alz. Assoc. holds each year in Fort Worth. They bring in experts in research and treatment, and I learn so much about this disease. I also realize how much they (we) still do not know about it - like why it strikes certain people. There is the genetic side, of course, and many of those hit family members at a young age. The head of Alz. research with the NIH commented that when symptoms begin, the underlying pathology of the disease has been present for about a decade. I saw major memory issues with Billy around 2000-2001, but in retrospect, he was always forgetful. He coped with it by making notes, writing on his palm, or putting a mark just beside his watch. He told me he did that because he looks at his watch so often, he knew he wouldn't miss it. On the flip side of the memory issues, he had an incredible way of remembering historical facts and figures. He loved history - Texas, US, World, etc. He loved to read about history and read voraciously. He never picks up a book anymore, and that makes me sad. I know he can still read because he reads to Connor and Claire sometimes, but his fluency is halted, and I think it's just too hard to comprehend sometimes. When something becomes difficult, we sure don't want to do that for recreation. So many points to ponder from yesterday...

  • Do I give Billy meds for issues that bother him or me? The medicine for sleeping is probably more for me...I don't know that his lack of sleep bothers him, but I need rest to function throughout the day.

  • Will I be able to keep Billy at home for the duration of his disease? Honestly, I don't know that I can. I love working, and my job is part of my refuge. I feel much too young to retire, and I can't retire without full benefits for quite some time. Even if I have someone take care of him during the day, will I be able to care for his needs on my own in the evening? Change him, feed him, turn him, bathe him? It's overwhelming and scary at times, but God will not let go of me.

  • When eating becomes impossible, will I approve a feeding tube? NO! I've always had strong feelings about this, and the doctor who spoke on it yesterday affirmed my belief that a feeding tube is artificial feeding, and it can often do more harm than good.

  • What does a DNR entail? I also came to a clearer understanding of that. It doesn't mean that we don't treat an infection. We just choose not to be resuscitated when our heart or lungs fail.

  • Will the day come when Billy doesn't know me? Maybe not. He may not know what my role is, but I believe he will always know how much I love him.

One session was a panel of spouses who dealt with their loved one's disease. They laughed, and they cried. They told funny stories of things their loved ones had done, and they told the heartrending decisions they had to make. One panelist was definitely younger than the others, and she shared that her husband was diagnosed at age 54 and died at 58. His was a rapid decline, and I don't believe Billy's is progressing that quickly, but when he has a dip, it's a big dip. Currently, he is struggling with speech and finding the right words. Sometimes, he says entire sentences that really don't make sense, and sometimes it's just a few words. He rocks along at the same point for a long time, and then something occurs, and he plummets.

I am so thankful that we live in this area. Our resources are much greater than they would be in a smaller town. Shelley and I will be putting together a team for the Memory Walk that will take place on October 15, and I hope that those of you in the surrounding area, can join us. Watch for more details

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