June Journal 2022

It’s Sunday morning and I thought we were going to go to church. After getting up very early, Dennis went back to bed and is sleeping again. I went in to wake him so I could help him get cleaned up, but he is sleeping so soundly that I have let him be.

He sleeps a lot lately. When he is done sleeping in bed, he sleeps in his chair. He sleeps fairly often when I am reading to him. He always listens with his eyes closed and looks like he’s sleeping, but when he breathes heavily or snores, then I know he actually is. I wonder if this is a good thing, or not?

I know it’s very hard not to sleep when inactivity is the norm. He is so physically limited these days that he is weak and unstable when he isn’t sitting or lying down. I asked him last night what factors were foremost in his slowness and sedentariness, and he couldn’t really say and gave up trying. “I don’t know how to explain it. Oh well,…” and the conversation was finished.

He passes on opportunities to go out more often. It complicates any trip to wonder if he will find a convenient restroom when it’s needed, and when he has a hard time managing by himself. Everything is harder when he has to hold on to a walker, when he has trouble pulling up his pants, when he can’t get the walker out the door.

Able bodied people don’t know how good they have it. No they don’t.

I recently read an article attempting to “stage” or give the phases of Lewy Body dementia according to symptoms exhibited. It did not help me at all. He had symptoms in all phases except the last one before death. The only thing I appreciated about it was seeing the list of symptoms he doesn’t have. I have no doubt that we are being spared the worst of it. Almost 4 years into our journey and he still understands who he is, who his family is and how to be reasonably himself.

Although things could surprise us and bring one or the other of us to a final end, in a moment, it is looking like a long road to me. I need a plan for getting help and that is what I’m working on now.

He has three places in the house where he can be found – in bed, at the table and in his lift recliner. It is June but his stocking hat is what keeps him comfortable at night.

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