We got a call earlier in the week from a staff member wondering if we've seen any of these behaviors. I hadn't noticed anything our last visit, so I asked for examples. She said things like looking at his shadow box over and over and over. Going into another patient's room constantly and needing reminders that he's not supposed to be in there. Even using that patient's bathroom instead of his own. She informed me that he went into the bathroom and wouldn't get out for an hour. And that it sometimes takes him an hour to arrive in the dining hall for a meal. I was a little surprised and upset. 1) Some of these behaviors sounded pretty typical of him. And with a quick reminder, he would be on his way. I immediately wondered if this person was new and didn't understand that he might need extra prodding. And that even though he appears young and fully functional, not to let that fool her. 2) I was upset to hear that he was locked in a bathroom for an hour or practically missed a meal. The staff should be on top of that and not allow those things to happen.
So I went for a visit today. Sure enough as I walked down the hall, I could see him outside by his room looking at the wall where his shadow box was hanging. He was pointing out each photo and taking it in, in his OCD ritualistic way. When he saw me coming he started beaming and said he was so glad I came today. Then he went on to show me the shadow box as he usually does and wanted to know if I made it, as he usually asks. I spent a lot of time on it, hoping he would like it and worrying if I was including the right things, or anything that might upset him. I'm so glad to see that he finds comfort in looking at it.
So we went off to shoot pool. He still seemed ok to me, but as the game progressed I noticed it was hard to get him to get up and take his turn. He kept repeating what he was going to do "first I'm going to go to the bathroom, then I'll stop and get some coffee on the way back, and then I'll take my turn. Unless you want to get me my coffee while I'm in the bathroom?" I'd say sure, dad. I'll get it for you when you get up. Then he would just sit and light up another cigarette and repeat the whole thing 2 minutes later. This went on for about 40 minutes. Our typical re-directing wasn't doing a thing anymore. And I'm not sure how to handle it. I don't want to embarrass him, so we just sit and try to prod him along, but not make a big deal out of it or push too hard. But he doesn't seem upset or bothered, so we let it go. He did eventually finish his game and we were able to get him back in time for lunch. But I just knew this was worse than we've seen and I realized I was seeing what the staff member who called me about it was seeing
He cooperated walking back like any other time. He went back to his room to wash up for lunch. He sat on his bed and started repeating how first he was going to comb his hair, then he was going to wash his hands, and then he was going to go to lunch. After several minutes of this I realized he was stuck in a cycle again. He just kept repeating what he was going to do, and then he would sit. I tried offering to help him up to break the cycle, but he said no he could get up. We tried turning the faucet on to get him to wash his hands, but that didn't help. After about 20 minutes he asked if I could help him up and reached out his hand to me. So I pulled him up and he was back on track.
Watching someone stuck in the middle of an OCD ritual is just so hard and uncomfortable to watch. He started talking about the wood grain in the laminate floor and how it ran perpendicular to the door and was following it with his finger. Like it's another routine we don't normally witness. Like it's something he needs to do before he gets up off the bed. Before he started washing his hands, he had to first comb his hair and then he started pulling paper towels out of the dispenser and counting them aloud. He needed 5 before he could proceed.
Now I completely understand what this nurse was talking about. If you're on a floor working with 30 other patients, you can't sit through these rituals and then drag him to lunch. In the past all they had to do was come back and check on him every few minutes and remind him to come for a meal. But now he needs more assistance than that.
I do hope they realize that he is not being defiant or purposely being difficult. He's not saying "no". He agrees to everything he is asked to do. But then he gets "stuck", and he can't follow through. I remember reading about FTD, or maybe even dementia patients in general, and how they will start to have trouble completing a task that takes multiple steps. They get stuck after the first step or thought. I don't even think it's a matter of forgetting what they were going to do. I think the brain just loses the signal of how to get from point A to point B. This is going to get harder and harder to watch.
Hugs Denise. I am keeping you all in my prayers <3
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