Saturday, February 4, 2012

The Big Move, Part II

I've started this post three times, and I intend to finish this one. I'm starting earlier in the day, so I shouldn't fall asleep while writing this time. I don't know that I'm any more clear-headed than usual, but I am awake.  The last two weeks have been busy, hectic, emotional, and difficult, but God holds us up and gives us what we need to get through it all.

The questions I'm asked most lately are, "How's Billy doing? How is he adjusting?" Those are hard to answer. Every day is different - just like the days when he was living at home.  He has days that go more smoothly than others, and I hope he has some good days, but I struggle saying that he's okay. He's not okay - he is confused - most days he tells people I'm his wife, sometimes he tells them I'm his mother, and sometimes I'm his sister.  The good thing is that he knows I'm someone who loves him very much. He's agitated at times - his brow is furrowed, and he looks at me intently when he tells me he doesn't want to be there. He wants to go home.  Sometimes he tells us he's had a good day.  Yesterday Shelley asked him what he had been doing all day, and he pointed at the books that are painted on a wall mural and said he had to straighten all those books and put them on the shelves. The same mural has a cute little dog in a doggie bed lying in front of the fireplace.  Some evenings he tries to get the dog to come see him. Sometimes I smile at him and tell him that I think the pup likes her bed. Sometimes I fight the tears and curse the disease. 

One piece of good news is that he's allowing the aides to help him shower.  The first few times, I had to be in the shower room with them to assure him it was okay for them to help him. He's eating better - nothing like the Billy Jack we all knew who could eat massive quantities of beef, but he's finishing most of his meals.  He does have random times when he just won't eat. I try not to let it worry me, but not eating usually indicates a difficult time is ahead. One night when he wouldn't eat, he spent the next forty-five minutes telling me he wanted to go home and stay with me.  He was intense in his pleading, and I felt so cold-hearted telling him I couldn't take him home. I did finally break away and felt horrible all the way home.  The next night, he was okay for a while, but he started in on the same scenario as the day before. 

One of the nurses spent some time with us the first day we were here, and she described Billy well when she said that he has one foot in reality and the rest of him is in dementia-land. He understands enough that he knows this is not where he wants to be or "should" be, but he does not have the reasoning skills to understand why it needs to happen. Last night I sat with him while he ate his dinner followed by some time watching television with Shelley and Andrew.  As usual, he didn't want me to leave, but he wasn't as intense as the two nights before. 

Last Saturday I picked him up and took him home for a shower and shave.  I took him to church and then we went to dinner with some friends.  He was really great the whole time. It seems that the medication adjustments are helping him to be calmer. Instead of extreme anxiety during the church service, he dozed off.  I'll take dozing over the other. Taking him back to the place was not too bad on Saturday night....he made it clear he didn't want to go, but he agreed to do it.  I picked him up on Sunday as well, and we had a good day, but I think we kept him out too long and he was tired. He was very confused when we took him back to the place, but his new mantra seems to be, "I don't like it, but I'll do it." 

Through it all, Billy is pretty compliant.  The first few nights were difficult, but I check with the night nurse periodically, and he's getting better about going to bed.  Right now I can't imagine going a day without seeing him, but my counselor assures me there will be a time when I may skip a day here and there. I also know that I need to get away once in a while, and I'm hoping I can do that during Spring Break. 

So many people are praying for Billy and for our family. We are grateful to you all for that.  The prayers are felt, and they are answered. God is faithful and wonderful. We've also been blessed with some monetary gifts from folks who love Billy, and I am not only humbled but deeply grateful.  We are trying to get all of his dental work done, and your gifts are so helpful in that area as well as medications and other costs of caregiving. You have blessed us. 

Love and peace to all.


  1. Kathy...I am praying for peace for you and your lovely husband. It is a wonderful thing that you are doing - the sharing of your feelings, your experiences, your bravery and fears. This certainly is a reality check for everyone. You are in my thought and prayers.
    Kellee Lee

    1. Kellee,
      I've missed you and Zander this year! Thank you for your prayers and your concern. Blogging has helped me tremendously to sort through all of the chaos of this horrible disease. I'll keep writing, and I hope you'll keep reading. kathy

  2. I am so very thankful for these little steps of progress in your huge transition. It is so good that you are journaling all of this, because it can really be an anchor to be able to review the journey and see the Lord's Faithfulness. We love you both!!!

  3. Keeping you and Billy in my thoughts and prayers.

    I'm on the same journey, and all I can say is one day at a time. Prayers, family and friends are such a blessing. There's so much heartache involved with this disease.....

    I hope you're getting some rest and taking care of yourself.