It’s hard to describe how someone can be apparently sleeping, and at the same time be restless. Isn’t sleeping rest? Good question. We are starting to experience something that doesn’t feel like sleep or rest for either one of us.

This post was written last week, but then it sat around waiting and wondering why it didn’t get to go on the blog. Poor neglected thing…

The last couple of days have brought a few subtle changes. The husband did well at keeping his eyes open while we had visitors, but he could not talk. Later he tried talking to me but I could not understand him. Much of the problem I attribute to his mouth being dry. He breathes with it open all the time and his tongue dries out and becomes pretty useless in forming words. He doesn’t move his lips either. Words are just a bunch of vowels – aahh, eehh, uuoohh. I guess and we play 20 questions until I give up.

And then the restlessness started. I stopped dressing him in sweatpants for convenience sake, instead putting a blanket over his legs when he sat in the recliner. But it wouldn’t stay on. One leg would come up on the chair and the blanket would end up on the floor. Twice, when the recliner was fully extended, he got his legs trapped between the footrest and the chair and couldn’t get out. That was interesting.

Me, demonstrating how not to sit in a recliner.

Then I started finding him uncovered in bed whenever he was in it. It does get warm in the house on a sunny day so I can understand him wanting to cool off. But at night it can be chilly. Last night, every two hours or so, I found him with the sheet twisted around his feet, his bare legs and shirted torso uncovered, blankets on the floor, eyes wide open and hands reaching for some invisible something. One time while I covered him, he said “Cover me more” and it came out clear as a bell.

So my guess is that his lucid moments are becoming fewer, and his “dreams” or hallucinations are more frequent and require movement. So he moves whatever he can, which is mostly his right leg and arm.

I know I’ve been losing him in small increments for a long time, much of it he has hidden. He’s not able to hide anything now.

These are the sad times that I speak about. The good thing is that he is here with me. I don’t have to go anyplace to take care of him. No snowy, icy roads. I can handle the interrupted sleep and the crazy talk.


I. Need. Another. Cookie.

Yesterday’s thought provoking incident happened around supper time for us. The family had scheduled a Zoom conference to do some advance planning for our summer reunion. I came over to the husband who was sitting in his lift chair with the tv on, his eyes were closed. I told him I was going over to Mom’s house to help her get on the Zoom. She is always confused about computer events.

He opened his eyes and listened to me but had such a blank expression that I started over and reminded him of the details, the Zoom, of the reunion we were planning, and watched him get totally confused by it all. He said so, repeatedly.

“I’m confused. I don’t know, I’m just confused.”

He couldn’t find more words to describe his mental state, and that alone was causing him concern. I could see that he was getting frightened.

“Can we pray about it?” He finally asked, shaking his head. So we did.

He then decided that the best thing would be to go back to his bed, even though he had only been up about half an hour from his last nap. I watched him closely as he went to the bathroom, took off his glasses and hearing aids and laid down. He was a bit confused even in that routine. But he slept for a couple hours, got up and ate supper, and apparently felt more himself.

What was going on there? I don’t know. But I realized that I was past the point of rushing him to the ER for stroke intervention, or any other kind of help. He didn’t ask to go either. Weird changes have become so normal. Some of them I’ve just read about and others have actually happened to us. Once he told me he couldn’t see the food on his plate and wondered what was happening to his eyes. Other times he has decided not to go out to church, which he normally loves to do, because he is feeling “foggy” or hasn’t had a good night.

I wish I could have the conversation with him about what he does want to have done at times like this. The trouble is, he still hopes for a touch from God to take away this disease. He wants to live…. Who wouldn’t, if they were well. I wonder if he would understand that I think the hospital would only prolong his life with LBD. I wonder if he would agree that his present state is not the picture of quality life. I wonder if he would feel like he has lost his advocate.

If God plans to heal him of this dementia, couldn’t he also heal him of a stroke, or an infection, or any other life threatening ailment? He could, and I am content to let him (God) decide when those things come up, without outside interference. But what kind of caregiver, what kind of wife, does that make me? I’m just not sure. I think God and I are at peace with him giving me directions for these scary moments. I will need a nudge one way or another. I will need help in not feeling judged for my decisions.

Yesterday I sat down with a cup of tea and a cookie. I thought and thought about these things and all I could come up with, as I finished the last crumbs, was that I needed another cookie.