Many things are happening this week. Tomorrow, we should see the boys, Barry’s grandsons. Their dad’s parents are bringing them to Lansing. We all plan on going to Smokey Bones. This is huge. I believe he really needs to see them one more time.
Wednesday, Barry goes to the doctor. We already had an appointment scheduled for the 31st, but the insurance company insisted. Pain in the keester, but let them see what I see. In their minds, Barry is probably improving and therefore no longer qualifies for help. In reality, the only question is how close he is to qualifying for a nursing home. Barry has gone downhill a lot just in the past few weeks. For example, yesterday, Sunday, he spent all day trying to convince me it was Monday. We were even watching CBS Sunday Morning for part of it. We missed his Sunday meeting because of his insistence that it was Monday. His routine has been absolutely everything to him and now his confusion supersedes his routine. So this morning he insisted it was Tuesday. I said no, but there is a marathon meeting today, New Year’s Day. I just don’t want him expecting the boys today. Also, he has gone downhill physically. I spent last week with a cold or the flu. I call it “the creeping crud.” My godsister gave it to me at Biggby. And then I gave it to Barry. The aspiration debris in his lungs is now infected. He sounds awful. Let the doctor see him. I want this all documented. I want others to see what I see.
Then Thursday I go to the cancer people and they officially train me to do the mail. I already understand some of it, but I can take notes.
I haven’t done much this week with the Excel file because I have spent my time sleeping. It feels so good to breathe again.
It’s so hard to watch Barry because absolutely every single little thing is so difficult and exhausting for him.. The Huntington’s is kicking his ass now. I didn’t see his dad at this stage, so I don’t know if he ever got this bad. It’s painful to watch.
God willing, and so far not so much, this phase will be mercifully short. The reality has been the opposite, however. The pain and problems just linger on and on…But I am pretty sure I see the light at the end of this tunnel. I seriously cannot even imagine what kind of shape he would be in a year from now. A year? How about two months?