LBD

Traveling with Lewy

/ Shirleyjdietz / 2 Comments

7-28-2019

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…

A Necessary Trip

/ Shirleyjdietz / 2 Comments

I know changes of any kind can be very upsetting, both to the elderly and to someone not feeling well, but we needed to travel. Dennis has been very emotional since his LBD diagnosis and at times feels like any moment could be his last. He has wanted to visit his hometown in Pennsylvania and see his family again, one more time. I agreed.

He also is still convinced that our condo is improperly grounded and has an electric field that is killing him. He felt that two weeks on the road might make such a difference in how he felt that he would be using his computer again, doing research, reading, and working on his book project. I asked him to think about what it might mean if he didn’t feel any better after time away from the condo. “It would mean that I wasn’t gone long enough. That’s the logical conclusion.” So, although I will look forward to a return home at some point, he will not. He’s already dreading it and doesn’t hesitate to say so.

The travel to Pennsylvania went fairly well, although it was a bit like traveling with a small child as far as getting in and out of restaurants and the motel. All things seem exaggerated to Dennis and are potentially upsetting. The 10 minute delay due to traffic conditions becomes “the most awful” part of the route, even though it was par for the course to my way of thinking. The pay stations on the toll road were “terribly stressful” and upset his stomach. Stopping for the night caused him to be so grateful for God’s help in solving our problem when I wasn’t aware that there was a problem – it was the plan.

I expected that he would feel exuberant after his first night of rest at his brother’s house, but he was very quiet and wanted to go back to sleep instead of having breakfast at the hometown cafe. He had very little energy all day and fell asleep for a while, surrounded by visiting relatives and busy chatter. He cried when talking to his sister and brother, and kept thinking of things to talk about of a “final” nature. I can see that this visit might take a lot out of him. I don’t think I can do anything to help with that.

Such a Hard Thing

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Such a Hard Thing

6-20-2019

If it were not for hugs, I would not know what to do to preserve the relationship between my husband and myself. Sometimes it is all we can do. We have to quit talking and hug.

We often hit an impasse when he attributes his symptoms to something other than Lewy Body and I remind him that LBD is the most likely cause of most all his symptoms. “That’s just a name. Nobody really knows what it is, what causes it”, he will tell me. Whereas he is onto something big that may prevent LBD and other dementias. It’s something that God wants him to pursue, record and publish.

He wavers. Every now and then he wonders if he has heard correctly what God is saying to him. He will even think that LBD is something God is using to get his attention and correct him in his ways. He will get very introspective and cry. He might even conclude that God wants him to quit trying to convince others and trust instead. But he cannot quit thinking, researching, striving, so the next time fear or anxiety strikes he is right back in the game. There is always a new plan to present to me first, then to whomever he can get to listen and perhaps act.

One morning after requesting a serious talk, he told me that he would never hold it against me, or others, for not understanding. It was his fault for not being able to explain it well enough. I told him it was not a matter of understanding, it was a matter of believing. To him, his theories are facts that others should be able to understand. To others, his theories are just that, theories. And they are not the most likely explanation for what is happening to him.

He often suspects that I have been leading people to view him as unreliable in his ability to think and reason. I get requests to not do this, and especially to “change my song” when talking to him. He gets frustrated with me but is not angry, just obsessed and persistent. For that I am thankful.

He is seeing his illness as a very spiritual experience. He hears God speaking through it, and I agree that some of the things he hears are right on target. He has changed his mind on some important issues. But after he feels he has gotten the lesson and accepted God’s correction, he then looks for physical healing and wonders why God is withholding it. Then doubt, guilt, depression and self pity come rushing back in. He is more in touch with his feelings than ever before in his life. He cries nearly every day.

He is not crazy. He talks knowledgeably about many things. It’s his conclusions and his obsessions that make people question him, and they would do that even if I told them nothing.

Higher Ground Please

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6-22-2019

The last few days… we have been several places away from home seeking relief from the electric fields. We have spoken with electricians, we have prayed and battled spiritually, we have actually changed course and are no longer using grounding pads anywhere.

Dennis has had a couple new symptoms and I’m sure they alarm him. He has trouble swallowing his many pills. They are all supplements so it’s not critical he take them if he has trouble, but since this symptom was addressed at the conference we went to, it is an alarming occurrence to him.

Another surprise, he mentioned hallucinations. He thought he saw me coming toward him out in the field today – I wasn’t. He thought he saw a man outside the window but whenever he turned to see who it was, the man was gone. He said the H word himself.

But mostly it is still the electricity issue that is on his mind – trying to figure out why he feels tingling in his hands, cold extremities, dry mouth but drooling at the same time (???), and changes in his mental and emotional status whenever he is on the property and especially in our condo.

He would explain it this way. The code is written for single residences but our is a duplex. Because of that there are two grounding rods, 10 feet long and 6 feet apart. He looked up the code and found that it was a minimal requirement and didn’t take safety fully into account. He feels that electricity from one grounding rod is conducted through the grounding rod, into the wet ground (high water table) and feeding back into the other grounding rod and into our house through the neutral electric wire. Somehow this translates into the theory that if he gets up high enough above the water table his symptoms will lessen, perhaps go away. The rogue electric current is denaturing the protein in his body and creating more Lewy bodies faster than he can get rid of them with his magnesium water.

He talks these theories/facts endlessly, and I finally am telling him to leave me out of the conversation. I am not going to help him research electromagnetic shielding on the internet. I don’t want to hear about the dairy farms where this happens commonly, according to him. I am not going to try to lower the water table (he has ideas on how) or dig up the grounding rods and pull them out of the water.

As he says, he is sorry to be so much trouble, but the house and really the whole residential development is killing him and he has to get out. You have never seen desperation like this.

Fluctuations

/ Shirleyjdietz / 1 Comment

6-18-2019

I am so glad there has been a gradual change over the last couple of days. I don’t know if has been because I asked him to quit taking proteolytic enzymes for a few days, or perhaps it’s just a Lewy fluctuation. Either way, I’ll take it and be thankful because this has been a stressful week and a half.

Last night there was no begging to go elsewhere to sleep. He slept part of the time in bed and part of the time in the recliner. He came and got me every time he needed to change something and that was a bit reminiscent of my night shifts as a private duty nurse, but over all we were peaceful.

He did want to get out of the house early this morning and go to breakfast at the Family Restaurant, but hey, I’ll take breakfast out most any time. He figured getting away would help him recover from the hours spent overnight in the electrical field. He wanted to sound intelligent at our meeting with the financial advisor at 10.

But breakfast was over by 8 am so he wanted to hang out at the church – just on a whim. It was open (are churches always open anymore? Don’t know) so he went in and fell asleep in the Fireside Room while I spent some time in the dark sanctuary playing with the piano. It was a good choice, and I’m keeping it in mind for the future.

Of course, all this time he was worried about hearing from the electrician. Even though I had called twice, the man was not calling back, not even to say he was too busy to check out our “grounding problem”. Dennis had figured out a new angle during the night and at breakfast he made me write down the specific points he wanted the electrician to check on. So the electrical craziness has not gone away by any means, BUT one of his phone contacts who he greatly admires had told him he was thinking wrongly and he started believing it. The result was that he didn’t have to be on any grounding pads all day, he quit wearing the moccasins with the lining cut out, and he actually thinks it is good now to be insulated from the ground. Go figure…

Tonight he was able to talk coherently, see almost normally, check his own email on his phone, get himself out of chairs and the sofa without difficulty, and was CHEERFUL. Wow. He ate supper and has decided to sleep on the futon in the sunroom, which is fine. Maybe I’ll get some sleep tonight.

Camping Out

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Crazy Day

6-17-2019

I was in such a cooperative mood today – determined to help this guy feel comfortable somewhere other than in the house. I told him we were going to set up camp out in the field. How could that not work?

⁃ Tent has a polyethylene floor so it’s not grounded

⁃ Truck has rubber wheels so it’s not grounded

⁃ Nothing to plug the grounding pad into

⁃ Must find Ohm meter so we can tell if we’re conducting anything

⁃ Must have multiple things to sit on besides the truck, for comfort

⁃ Must have peanut butter, cheese and magnesium water

⁃ Must be in the shade in case it’s hot

⁃ Must have jacket

⁃ Must have head pillow

On and on. We spent quite a while fixing alligator clamps from the Ohm meter onto a grounding spike, which was really a huge wood file I had scrounged from the workbench. This contraption was then attached to the truck to ground it. He figured he could ground himself by holding on to another wire attached to the same spike. When we got out to the field and set up the chair, the snacks, and the ground wires and the grounding pad on the chair, I was all set for a good time tending the garden while he communed with nature and his phone.

Less than an hour later I was getting phone calls. The grounding wasn’t working and he knew why. And then the call that he and the walker had made it back to the house and couldn’t get in – back door was locked (um… try the front door, it’s not.) Next, where is the remote that changes the channels on the tv? Next, bathroom problems. I gave up and went to the house. Later I walked back to the truck, loaded everything up and drove it all back. So much for camping out. Not doing that again.

Grounding the truck, or maybe not.

Exactly What?

/ Shirleyjdietz / 2 Comments

What exactly am I to do?

He came shuffling from the bedroom where he had gone to sleep and found me, still working on the computer. I dread the sound of him coming because I know he is going to tell me some new reason why he has to get out of this house.

“Do you see this?” He hold up his hand with the fingers curled nearly shut. “My hand was frozen like this. Locked. I couldn’t move it.”

His face has “that look”. Haunted, bleary eyed, almost motionless even when he’s talking and trying to be dramatic.

I don’t know what to say. “It’s a movement disorder, Parkinsonian problem. How do you want to remedy the situation?”

“There is no remedy. I have to get out of this place.” He teeters and catches himself as he turns and shuffles out again.

I think for a while and follow him into the dark room. We talk. I’m desperate. He’s desperate. In frustration I tell him to get his clothes on and get in the truck. I’ll take him somewhere remote and we’ll both sleep there tonight. He refuses my offer. The truck is not grounded, so it wouldn’t do any good.

He’s so good at throwing something crazy back at me, almost like a test, but he doesn’t think it’s crazy at all. “We need to call Mayo Clinic and see what they do for this. They’re here in the Midwest where there are lots of dairy farms with grounding problems. They probably have people with this and know what to do.”

This sounds ridiculous to me, and I know what Mayo Clinic will think when they see his diagnosis, but it is something I can do. I can ask. Will that satisfy him? I tell him they aren’t going to get back to him tonight.

He knows that. “They’ll probably just tell me to get away from the house.”

Yeah, probably.

Father’s Day 2019

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6-16-2019

Today was Father’s Day. It was not a bad day, but in some ways a sad day.

The better part was that we left the house early for church, ate breakfast afterwards at a restaurant, and then stayed outside away from electric fields all day. At least that was the way I saw it.

Dennis talked to both his daughters on the phone today and listening to those conversations was the sad part. He has changed so much, even in the last two weeks – rambling, sometimes confused, distracted by clouds or his own thoughts. In his account of the day he mentioned a major mistake he (we) made. I didn’t agree, but it made no difference.

I decided that since we had such a nice rest in the truck the day before, why not just drive our truck out in the wetland meadow behind the barn and he could spend as much time there as he wanted. Why not, indeed? So we did that, found a nice shade tree to park under, repositioned the truck several times, rehearsed how to open or shut windows and then I left. He could call me on his phone if he needed anything – I would be only a short distance away.

He stayed there several hours while I did my cleaning job and only called me twice. I went out to check on him and he was so busy talking on the phone that I left again and went to the house to do chores.

His next call to me was about his mistake. He hadn’t been thinking and had wasted a few hours already by not being grounded. The truck, having rubber tires, is not grounded unless a chain or something metal is touching the earth. He was having to get out of the truck and put his feet down and walk around to remedy the situation. Could I bring the walker out so he could sit on the seat and still have his feet on the ground. Yes, I could. I even brought him a snack and his magnesium water. After all, it was Father’s Day.

I heard him repeat the story twice to our daughters later. After hearing it the first time I asked him why he needed to be grounded if there were no electric fields, no EMFs in sight, but he didn’t answer – just shook his head. I guess I don’t really understand electricity (along with a lot of other things…).

Walker with seat attached

Not so long ago he would never have been caught using this. Now it is his best friend.

Taking It All In…

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6-11-2019
There have been several poignant moments today. In one of them, I could tell that my LO (loved one, as they say in the support group) was feeling very emotional. He was standing listening to a song “All Is Well with My Soul” and was clearly losing his composure – this, in front of our good friends visiting from Florida. I hugged him and helped him sway to the music. We danced, or something close to that, for the remainder of the song. He was able to quiet himself and come to the breakfast table with us.

Later, we were meeting with our pastor over a matter of great concern to us both. I had promised him he could talk and tell the pastor whatever he wanted to tell him. They talked for 90 minutes. One of the things that came out was his remembrance that I had said he was not the man I thought he was, when I married him. He wanted to admit that he had not been fully present in some of his family duties. His evidence that I felt that way was that I referred to him in my writing as “the husband”, not by his name, Dennis. This was the first time I had heard this and I was a little shocked to learn how he felt about it. It is easily remedied and I will call him Dennis from now on.

The last thing on today’s list of new realities was hearing Dennis’s announcement of finding new articles proving the connection between electrical sensitivity and Lewy Body Dementia. Once again, he is alarmed anew, to the extent of experiencing “angina” across his chest. Our proximity to power lines is an imminent danger to him, to me, and to my family. Nothing anyone has said about this matter has changed his narrative. I’m wondering if this is what the support group refers to as “looping”.

I also read something alarming today. There is a statistic that says 40% of caretakers die before their patient does, for various reasons (neglect of their own health, stress, etc…). Although I aim to be among the 60% that don’t, I have to admit that it is stressful to repeatedly hear about how we are all in grave danger, on the road to self destruction if we don’t heed the warnings of my husband, Dennis.

The First Days of June

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The hard thing happens every time the husband comes up with new evidence of his “theory of the day”. He looks at me dramatically with a horrified expression on his face and explains the newest evidence of the connection between electricity and the way he is feeling. Today his thoughts have been directed to the ants who have nests in the ground around our house, small red ants that are common everywhere. He tells me that it is a well known fact that they are drawn to electrical current, citing several experiences with ant nests in electrical boxes and outlets. He has gone around the house locating any pile of sand that the ants have deposited and lining it up with an electrical outlet inside or outside the house. When asked what that means for us, what should we do about it, he says that we should get the house properly grounded. I remind him that it is already grounded to code and more (yesterday’s episode) and he then remarks about the age of the water heater, as if that cancels out the electrical grounding.
Last week he insisted on buying a grounding mat for the bed. I spent several hours researching the ones he was looking at and finally did the ordering for him. I decided it would be worth the expense if it would buy him some peace of mind. I even bought a smaller grounding mat for his feet when sitting in his chair. The first night, the effect was too much, although I’m not sure how one gets too grounded. We tried putting a sheet between him and the mat. When that didn’t feel right either he decided two sheets would be better. When that didn’t feel right he presumed the sheets weren’t effective because they were polyester. When he found out they were both 100% cotton he had no answer, but he still couldn’t sleep on the mat. Please send it back.