Friday, May 4, 2012


What a week! One sign of a tough week is when you wake up on Wednesday thinking it should surely be Friday. The roller coaster with Billy started last Friday. I got to the nursing home too late to take him to the main dining room, so after he finished dinner, we sat in the little TV room for a while. He was unusually quiet and distant. He answered questions when I asked, but the answers made little sense. He batted at something in front of him, and I thought it must have been a gnat. I asked him what he was hitting at, and he said, "a magnet." I didn't respond to his comment but continued to sit with him and watch Everybody Loves Raymond. He doesn't laugh at all the right times anymore because he doesn't really engage in television, and if he does hear something funny, it doesn't seem to register for him. He swatted again, and I knew I hadn't seen anything. "Another magnet?" I asked. He shook his head and said, "cigar." This is new territory for me. I ignored the next swat. 

One of the sweet little residents who talks non-stop in the same tone, smiles, and claps her hands, joined us like she does each evening. Billy usually just smiles and responds to her with a nod. That evening, he seemed annoyed with her, and he responded with something that made no sense, and he didn't smile at her. I left soon after because I really couldn't take it anymore. 

I'm sure part of my sadness was from losing our friend, Shelley Reep, a few days earlier and putting my initial grief on hold. I'm pretty good at compartmentalizing my feelings. When I'm at school, we have enough going on that I can easily become engrossed in all that it entails, especially this time of year. Deadlines for so many reports and evaluations, homework for principals' meetings (boo!), closing out this year and planning for next year. The list goes on and on. After I get away and start thinking about life outside of school, it hits me that I have some things to deal with. 

The next day, I was concerned about taking Billy to church because the previous week, he would just talk out, and Shelley and I would remind him to be quiet. This Saturday, though, he was fine. No talking out.  After church, we went to my sister's to have supper all together - something we've not done in a long time. Billy was in rare form - silly is the best description I can think of for his behaviors. He made faces, he commented about most everything anyone said, and his comments were so completely off base, that we would laugh. More than once, I wanted to cry because it was so random, but like I said, I can compartmentalize for a while. The dam breaks later, though, and I feel that pain you feel when you know someone or something you have cherished is no more. 

Something I've come to know in the last few years is that we get little previews of what is to come. I'll see a new behavior and think that maybe I didn't see it correctly. Maybe I'm reading too much into it.  Then we'll have a few days where we don't see that behavior, but it usually comes back. Billy was in pretty good spirits Saturday through Monday. I had a meeting on Tuesday evening and couldn't get over to see him, so Shelley spent dinner with him. Later in the evening, she was really down about his his demeanor...she felt he was somewhat unresponsive and distant. 

I know exactly what she's describing. Gary Reiswig wrote The Thousand Mile Stare, a book about his family where Familial Early Onset Alzheimer's Disease is prevalent. He describes how the family members get a look in their eyes as though they are a thousand miles away. I see it in those residents who are further along in their disease than Billy. They look in your direction, and they look right through you. Billy's eyes have been different for a few years now. His vision is fine, I'm sure, but when you see his eyes, they have a different gaze about them. We've had a preview of that distance a few times now. When we went on Wednesday, he was back to his happy silly self with dancing silverware, and he's been that way the rest of the week. But we've had our preview, and we know what is coming. 

On a lighter side, the unit has three new residents - all women and all interesting and challenging in their own ways. God bless the sweet people who work with them for hours each day. I was reminded of how Billy has changed in the three months he's been there. He's so much calmer than he was, and he is so much less aware than he was. The disease marches on, and we cannot stop it. He still knows his family and close friends, and even though so much of what he says is nonsense, he says, "I love you," often and sincerely. Thank you, Lord, for that blessing. 


  1. Thank you Kathy for writing & sharing your times with Billy & the various changes & challenges. Praying for God's grace, peace, comfort & love to be upon you as AD takes a little more of the Billy you love & remember. Only He can sustain you through this time. We love you!

  2. Dear Kathy,
    My heart breaks for you. I am truly so very sorry. I hate this disease. I hate what it does to those we love. I know you are so very weary. May He grant you rest and many recuperative niches woven into your days.

  3. So how is he doing lately Kathy? So sorry you have to deal with this disease also. I know what you mean about compartmentalizing things, I do that also, but I also think it helps me to survive all the chaos of life these days and helps me to ride this roller coaster! :) Thanks for your sweet comments and insight you always leave on my is so helpful!! :)