3-5-2019

We have spent a couple of days driving to and attending a conference, a summit on Lewy Body Dementia put on by Mayo Clinic. They put on a very efficient and informative event and I’m glad we were able to go. Dennis met and talked with quite a few people who are struggling with LBD, like he is, and I know it helped him to not feel alone. He viewed himself as being able to encourage others and give them hope. I also met caretakers going through what I’m going through and much worse. It was also interesting to learn more about a complex and difficult condition. The ONLY time nutrition was referenced was when they announced breakfast, lunch and snacks (which, by the way, were very well done and worth the $30 per person registration). I’m pretty sure Dennis was the only person who said the word magnesium, and thankfully he didn’t say it very often.

The virus I’ve been fighting is gradually playing itself out. I kind of wonder why it does that instead of living on in the most virulent stage. Is it that my immune system is developing weapons against it, or that it has a life cycle that determines its course? I am still coughing and uncomfortable but I had no headache yesterday and was able to sit through the day without leaving the conference or making those around me feel infected.

Travel is interesting in that I see how much care Dennis needs in unfamiliar environments. There is nothing about our travel that he plans or gives thought to.  He tries at the last minute to be the “man in charge” by asking how much gas is in the vehicle, or if I have all the cords and device chargers packed. I appreciate our handicapped tag at restaurants and stores, but sometimes it is even easier (or required) that I drop him off at the door of a place and then go park somewhere away, and walk back carrying whatever stuff we have with us. It is often easier to provide him with food or drink than witness his confusion about how to get it himself.  For my own sake, I take more time to look him over, making sure his clothes don’t have spots on them and he doesn’t have food on his face. He doesn’t know how he looks in his stocking cap and puts it on in all sorts of weird ways.  It is partly for my own benefit that I try to get him to be clean shaven and appropriately dressed, but also to keep others from getting negative first impressions.  It’s not all about LBD I don’t think. He’s been unaware in varying degrees for years and years. Or maybe it has been LBD and he’s just had it longer than we know.

He takes all this “herding around” in good humor and jokes about it. He doesn’t fight my planning and decisions (because I don’t tell him ahead of time?) and as long as I let him think about where he wants to eat, he’s good with things and enjoys himself. His biggest challenge is finding restrooms when he needs them. We are constantly dealing with changing conditions, whether it be constipation, diarrhea, or urinary frequency so I keep my brain working on the location of any restroom we pass by.

One concept that was presented at the conference that I find especially intriguing was on the subject of hallucinations. The question was presented to a speaker about how to waken someone from a hallucination, which moved him to talk about what a hallucination was. He felt there was a possible connection between them and the REM sleep disorder that most LBD patients have.  Something about the LBD brain blocks the normal paralysis that people experience when they sleep. Normal people are kept, for the most part, from acting out their dreams. LBD people have physical response to their dream world. What if they also are missing the block that keeps the dream world out of their real physical world? These hallucinations that are realer than real to them, could be their dream life entering into their consciousness. We all know how real some dreams seem to us, and that is why their visions are so troubling to them. The husband does not have that problem, yet, thankfully.

This morning back at home, I am writing with frequent interruptions. As I tried to watch the sky and have my morning coffee at 6:30, the husband also got up and came out wanting to talk about ordinary things. “What is the temperature?” “The sun is in my eyes – can you lower the shade?” “I only had to get up once last night.” “I’ve learned to control my drooling by lightly pressing on C-3.” “Do we have earbuds so I can talk to my brother without using speaker phone?”

Mom has explained to me that she isn’t trying to be mean in going to her room and shutting the door all the time. She just can’t take the constant engagement on the subjects of the husband’s choice. It even bothers her to hear his telephone calls for hours.  But she says she is ok living in her bedroom, and I notice she now has a “dining table” with salt, pepper and her own small coffee maker in there.  I miss her and the times we would spend talking in the morning. It’s often the choice now between meeting my own needs for fellowship – leaving the husband rather obviously segregated, or staying out with him in view of his need for some kind of socialization. Why is he getting up so early?  Was it depression that kept him sleeping until 10 every morning? And now he’s all excited and hopeful? We can’t figure it out.

We’ll figure out one day at a time. Things are always changing.