Sunday, February 15, 2015

Thirteen years and counting...

Someone asked me recently how long Billy has had Alzheimer's Disease.  It's always hard to answer that because gaining that diagnosis seems to be a process.  I first noticed that something was wrong in 2001 after Shelley had graduated from high school. Billy was 45.  We were having major issues with our son, Andrew, and we had many discussions about those issues.  We would spend hours arriving at a decision on the consequences we would put in place for Andrew, and the next day when I would mention that decision to Billy he seemed very surprised and sometimes was angry that I had not consulted him first.  Billy was diagnosed with adult ADHD and given meds for that.  He probably did have ADHD, but the meds did not improve his memory. After that the doctors decided he was depressed, and he probably was.  He knew something was wrong but no one could tell him what it was.  From there his diagnosis became Mild Cognitive Impairment (MCI), and I assure you that it never seemed mild to me.  When he was 51, he was diagnosed with Alzheimer's Disease.  It was not like a blood test finally showed that he had it, or he finally had all the criteria on a list.  I remember sitting in the neurologist's office and talking to him about Billy's struggles at work.  I looked at him and said, "What do you think is going on with him?"  He responded that he felt that Billy had Alzheimer's Disease.  

Here we are thirteen years later, and we have no doubt about that diagnosis of Early (Young) Onset Alzheimer's Disease. For many years Billy looked like any of his peers, and in social situations he seemed completely normal.  But as his brain became more and more ravaged with the plaques and tangles, he could no longer function normally, and now the physical repercussions of the disease are astounding.  When Billy was diagnosed he weighed about 250 pounds - a bit too heavy for his 6'1" frame.  On February 4th of this year, he weighed 160 pounds - way too little for his ravaged frame. Billy's fingers were alway chubby, and his wedding ring was size 12.  Now I see his fingers and hardly recognize them as his because they are so thin.  His body is rigid and one leg crosses the other at the ankles. Many days he has tremors that are uncontrollable, but some days he doesn't.  He raises his arms and hands as though he is batting something away. When he recognizes me and smiles, he reaches toward me to touch my face. I try to lean closer, so he can touch me, but I have to move with caution because he has little control over his movements and may hit me in the chin.  His day nurse tells me to bob and weave!  Billy has been eating pretty well for the most part, but the last few times I've fed him, he lost interest before finishing.  I don't think he can see what he is eating which is a blessing because certain foods look really nasty when they are pureed.   He never liked spinach, and I see no need to try to make him eat it now.  

I struggle to find the positive in Billy's condition right now. This disease is evil and takes a person little by little until a rigid shell is left. I am thankful that his smile is still there when he recognizes us. His love is conveyed through his eyes when he smiles, and when I feel really sad about the whole mess, it gets me through.  

On the homefront, Mom is doing remarkably well for a person who was very near death on more than one occasion in the last several months.  What a blessing it's been for her to feel well enough to get out of bed each day.  She even went with me to Sonic yesterday for her beloved limeade.  She was wiped out when we got home, but she got out of the house for a bit at least.  I am thankful for every day I have with her and every week I get to watch Downton Abbey with her. It's the little things that feel like huge blessings from God.

A friend recently reminded me of this beautiful promise from God. 
"Behold, I am making all things new."  Revelation 21:5


1 comment: