Traveling with Lewy


Tomorrow we will have been gone for two weeks. We did the 16 hours (more if you count the slowdowns around Chicago) in two blocks and managed our night in the motel without difficulty.

In Pennsylvania we had sleeping quarters that were somewhat small so I opted for another room and gave Dennis the bed on the main floor close to the bathroom. The temperature regulation problem was one of the first things I noticed. There was a heat wave around the whole country at that time and Dennis’s head was getting hot all the time – only his head. He started putting a wet washcloth under his hat and wearing it most of the time. Of course, this discovery of efficient cooling had to be shared with everyone – they had to try it, and he was always telling me how everyone loved it.

The rest of his body was often cold. Since there wasn’t central AC in the house, his room was warm enough at night to please him. He often complains of sweating and freezing at the same time, so it is very hard to know what to do for him.

Dennis in his cooling hat.

Behavior wise, I did not notice big changes from previous times at home. He was often dramatic in his lectures and stories, often weepy and emotional. It was usually in a grateful way but toward the end he was getting depressed, it seemed to me. He was concluding that all were getting dementia and declining, especially his sister. Somehow the family history of heart problems was also getting lumped in with dementia and becoming the tell tale symptoms of “fatty liver” disease, which he thinks is his correct diagnosis because that is familial. LBD is not familial and the doctors wouldn’t have diagnosed him that way had they known his family history. Somehow he thinks that they skipped that part of his exam at Mayo.

Another behavioral thing I’ve noticed lately is that he isn’t able to sit for very long, especially on hard chairs. He feels he has lost all his cushioning fat and gets sore quickly. Of course he has even less tolerance of standing, so that leaves lying down. He does a lot of that. He was often sleepy in Pennsylvania and much of the visiting went on around him as he slept in his chair.

The day’s drive to North Carolina was uneventful. We didn’t have a heavy breakfast before we left so he wanted to stop for lunch. We pulled off and took what we found that wasn’t fast food – Golden Corral. He went in and sat down. I had to load his plate for him so he wouldn’t get confused with all the choices. I found a good, simple meal for him so he was satisfied, but I noticed that he was easily confused, sleepy afterwards in the car, and anxious for the trip to be over. He’s starting to think that the truck electronics are causing him to feel bad during travel. He thought it had to be the Bluetooth technology but I told him the phone was connected by wire to the truck, so he’s re-thinking that and I’m sure he will come up with something.

In North Carolina, he is back on what he calls his “regimen”, of which magnesium is a part (he has always been on that), and periods of autophagy. He loves to use that word. He wants a substantial breakfast, no lunch, and an early supper. That gives him a day time autophagy and a night time one. Every day he tells me which things have improved. His whistle came back today. Yesterday he wanted to know if I would celebrate with him as he had been able to spend time on the computer and had walked outside for a few minutes as well. One day he was excited that he had executed the complicated maneuver of setting his coffee cup on a dresser a short distance away from his chair – actually did it twice. It doesn’t take much to constitute improvement.

Here at Julie’s, the temperature problem is worse. The first night in a comfortably air conditioned room nearly froze him to death. I was loving it. However, he has no trouble asking that everyone accommodate his idiosyncrasies. We have had to go without the AC and use only the fans, accompanied by the lecture about how moving air will make you feel cool even when you are hot. What!? No way! Julie needs her sleep and opens a window after it cools down outside. I, on the other hand, do not need to sleep in a cool room, I guess.

I had to give away my piano when we left Florida and we talked about replacing it someday with something more portable like a nice keyboard. Since Greensboro is a fairly large city with a few music stores I wanted to look for a keyboard while visiting here. Dennis was all for it until we were sitting in the store surrounded by all kinds of electronics when it occurred to him that a keyboard was a digital instrument with electricity involved. The sounds are not real, they are electronic reproductions. He even woke up that night very confused, saying he felt like he was not real himself and in an unfamiliar world. I can feel him eyeing my new keyboard and getting anxious. I’m thinking I will have to refrain from using it around him and keep it covered at home, if we ever get to live at home again.

One day I overheard him telling some actually untrue things to someone on the phone. One of the things was that the farmhouse Julie’s boyfriend had bought was unlivable, and was going to take all kinds of renovation before it could be lived in. It made me realize that he doesn’t hear details correctly and makes wrong assumptions. Another thing was the “fatty liver” disease he has, which made me realize that even when he’s told details, he reverts to thinking his delusions anyway.

He wants to go home by way of my brother’s house in Michigan, an 11 hour travel day. This is probably what we will do, but until today I had not verified arrangements with my brother. This morning Dennis asked Julie to pray about us going there as he had a special reason for wanting time there. I was a bit suspicious about him asking her, but not telling me so I talked with him about it. He said it was not any of the reasons I thought, but still has not told me what it is. I think I’m worried…


We Go to a Summit


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.