Happy New Year! I truly want this year to be happy, and the first two days have been pretty good. I count "the holidays" as the two weeks I've been away from school and Billy's been away from his regular routine. Our holidays have been okay...not great and not awful. And as the journey goes, okay works for me.
I struggle when I'm off work because I feel guilty taking Billy to daycare when I'm not going to work. However, he is much better when he sticks to his routine. Weekends are tough because they are unscheduled for the most part, and I knew he (I) couldn't handle every day being like that. I had so much going on during these last two weeks, it was truly better for Billy to go to the C
ottage. Somehow I managed to delay all my yearly exams until the last two weeks of December, so I had five medical appointments on different days. I had to finish up Christmas shopping, wrapping, and cooking the week before Christmas. The first week went pretty smoothly until Friday. Terry started her vacation, so I took Billy to the Cottage and planned to pick him up early that day. I got a call from the nurse around 1:30 that afternoon asking me to reassure him I would pick him up at 3:30 that day. He was incredibly anxious and nervous and agitated. When I picked him up, he was okay, but one of the caretakers said she had never seen him like that.
The rest of the holiday went pretty much like that...up and down. Saturdays are challenging at best, and when Saturday is Christmas Eve it becomes really tough. We have done the same thing on Christmas eve for over 20 year. We spend it with Billy's family, and for the past 10 or more years, we've gone to his sister's house in Godley. Billy didn't understand that it was Christmas Eve, and he started the day thinking we were going to play baseball. He mentioned more than once that he didn't have his glove. For weeks back in the summer, every Saturday, he thought we were going swimming. He would sit in his chair with his swim trunks beside him. About three months ago, he started this thing about us going to play baseball. I could understand the swimming a little more because we actually went swimming a few times. I cannot remember the last time we played baseball. But I digress...
It takes about an hour to get to Billy's sister's house, and he asked questions about where we were going and why for most of that hour. About 45 minutes after we arrived, he was ready to leave, but we were not. We had our usual "Chinese gift exchange" and he did a great job of taking away a gift. Soon after that we started back to Fort Worth, planning to attend our church service a little late. Billy was completely confused and distraught the entire way home. We go through Burleson, his home town, on the way back, and we stopped at the light where 29 years ago, we would have turned to go to his childhood home. He looked at the sign, and without missing a beat, said, "Y'all can turn here and just drop me off at my house." I told him he lives with me now, and I wanted him to go home with me. A few more miles down the road, he said he wanted to just "put it in the driveway," and we all agreed that was best. By the time we got home, Shelley was in tears, and we agreed we would not put him through that again.
Christmas Day was better. We spent the day at my sister's, and he was calm for most of the morning. His sundowning begins in early afternoon, and while I was trying to help get Christmas feast on the table, he was six inches behind me or beside me. If I turned around, he was in my face. I finally sat down with him just to keep him out of the kitchen. We went home for a few hours, and he calmed down a bit.
I am thankful for the plateau we had for several months, but it seems to be over. The decline has begun again. I wanted to think I was seeing a few isolated behaviors, but those behaviors are becoming regular. One night, we were having our dinner (on the TV trays as usual), and we were watching our nightly episode of Wheel of Fortune. Billy said, "You're a pretty puppy." My instant reaction was to say, "Huh?" Then he looked at me and asked, "Where are our dogs?" I told him that Bailey, who is sort of our family pet, lives with Shelley and Andrew now. That incident was about 5 or 6 weeks ago, and since then, he talks to people who are not present almost each evening. When I asked if they've seen this at the Cottage, they have not. It seems to be an evening behavior. He does this in the car as though he's responding to something I've said, but I've not said anything. Tonight, he would say, "Here's one," and then hold out a napkin for me as though I had asked for one.
His self care skills are declining, and it takes us a long time to get ready in the morning, but we are getting there. He needs help buttoning and zipping his jacket. He starts the day nervously and does everything as though we are running late. He thanks me for everything I do to help him. He is such a sweet man, and when he has unpleasant moments, he apologizes afterwards. He tells me frequently that I am the best sister, and he is lucky to have me for a sister. I'm past being sad about this because some days he remembers I'm his wife. When I happen to pick him up at the Cottage, he introduces me to one of the men that he tells me is his boss. Some days, he introduces me as his sister and some days as his wife.
I believe I've mentioned before that in October of 2010, I put Billy's name on a list to be considered for Day Care through Medicaid services. I was pretty excited when he received a letter from the Dept. of the Aging and Disabled Services on December 16th. We were to call and set up an appointment for him to be evaluated. I called the next business day, and the person who sent the letter told me that the day after she mailed the letter, funds were frozen. Billy's name will be at the top of the list when funds are available again. As we've waited these fourteen months on the list, Billy has declined to the point, that his needs are more than daycare. I believe he would do well in an assisted living facility, and they are available through Medicaid, but that is yet another list. And we must not forget that Billy's case is not the norm. He does not receive Social Security Disability and therefore, he does not receive Medicare. It really stinks that Billy spent the last 15 years of his time working in a career he loved and that served children, and yet, even though he paid more than enough quarters (before teaching) to have SS retirement and as a teacher, he paid Medicare tax, he cannot receive benefits that would help him tremendously. Professionals who look at his income and our assets (or lack thereof)say he should easily qualify for Medicaid. In the meantime, I fill out paperwork, try to find a place we can feel good about, and we wait. We also pray that he doesn't get worse during the wait.
Through it all we are blessed by so many. I thank the angels who sent money during this expensive time of year when we still had some big expenses - like dental bills. Thank you for your constant prayers that keep us upright. Peace and love in 2012.