I have to say that I am relieved. We have had nearly two weeks at home that have been relatively stable. Dennis is doing so many things that seem different than the usual LBD heaviness, not that it is all gone, but he feels better much of the time. That makes it easier for him to think, converse, and go places. He watches TV, eats regular meals, sleeps at night for the most part.
Last night he came in, puffing and panting and looking a bit haggard. He said he had just run on his usual walking route. I asked him why did he run, and he said “because I can.” Okay. This is the guy who would hardly walk more than a few feet two weeks ago. He’s decided that he should push himself to exercise, knowing that he will not want to do it, but should for the benefits it provides. He decided he should learn where the dishes get put away in the kitchen so he could help with clean up. He’s been shaving himself and doing a much better job of it.
His vision is still pretty bad, he still has some obsessions with how he’s feeling and reports almost minute by minute. His whistle is gone, or his bathroom time didn’t go well, or he has no feeling on the right side of his face – stuff like that. Every now and then he worries about the electricity thing, that it will come back again when the water table rises. But over all he is doing so much better that it gives me a much more pleasant life. I cook meals, garden, fix the condo up a bit, visit with my mom and brother’s family, take walks and bike rides by myself. I feel somewhat normal, even with the limitations of our situation.
He’s looking silly on purpose. Just thought I’d let you know.
Once last week, we loaded up the lounge chair and went out to Round Lake. I set him up near the water at the boat landing where he could watch people and boats. He even shelled peas while he was there, although I would not give him the job again unless he gets a little faster at it. I was able to take a long walk and swim before we came back home. It was a lovely afternoon. I want to do it again.
The question I have is, “how long will this last? It’s an evil disease from what I hear from others. We have been blessed so far that he has not been so confused as to get violent, has not had hallucinations, and has not been so debilitated that he couldn’t move, eat, speak, etc… We’ve been dealt a merciful hand and I am grateful.
Today, Dennis insisted on going with me to attend the day’s work. Yesterday our 16 foot container from PackRat came early in the morning. I worked unloading it into Kevin’s basement from 10 am until 7 pm. Julie came to help around 3 pm and Kevin came to help with the last heavier pieces of furniture. We were satisfied just to get it all into the basement. No organization whatsoever.
So, today the work was to look over everything, organize into as small a space as possible, and identify anything we had been wanting with us in Wisconsin – all things I thought would be easier if I were doing them myself. But it was okay. He got ready to go quickly and was prepared to tough it out.
One of our furniture items was his mother’s Lazy Boy recliner. I cleared everything off it and made it available to him. For a while he poked around looking at and asking questions about furniture he didn’t remember. I admit, for a man it could be hard to recognize something that’s not in its usual place in your house. When he finally sat in the recliner he remembered how much he liked it – how it didn’t make his head bend too far forward, hard arms at just the right height, went back easily when he wanted to recline. I decided we would take it back to Wisconsin. (You can’t believe all the different things that can be wrong about a chair until you’ve been around Dennis.)
I suggested he look through a trunk labeled “Dennis, memorabilia”. He began to read the top layers of papers and found some interesting documents he thought he had never seen – perhaps given to him after his mother’s funeral when he didn’t have time to go through them. There were things his mother had written and copies of her will. There was the agreement signing the family farm over to his nephew. Of course, all these brought tears and choked him up so he could hardly speak.
But the worst/best, depending on how you looked at it, was a typed out sermon that he may or may not have actually given. He didn’t remember giving it and it was so long that he couldn’t imagine having been given time to deliver it either. It was basically the story of his life, particularly his spiritual development and his time in the Worldwide Church of God. Reading his decisions made years ago, I heard him say things like “I was so wrong back then.” And “I still have questions about that.” He wrote about his relationships with significant people in his life. He cried as he read it out loud to me as I worked. He was such an emotional mess I had to go hunting for some tissue for his eyes and nose. He was pretty exhausted when he finished.
The funny thing is that he didn’t mention wanting the chest to go back to Wisconsin with us. He read only a few things in the top layer. When it was time to leave, I closed it up and stacked it with our other things in storage. It stays there in Kevin’s basement. He’s had a persistent train of thought that significant family items should be given to his brother or to his nephews, almost like he’s forgotten that he has daughters who are going to want to know about his side of the family. He talked with his brother about some coins he wanted to give him, but his brother didn’t want them. That’s why they had ended up with Dennis in the first place. I’m pretty sure he wants his girls to make decisions about those things and I’m going to make sure that is what happens.
Loading the truck with the chair and a few other precious things was challenging, especially trying to get my new keyboard in the cab with us where it would be cooler. Dennis had all kinds of suggestions and he did try to help. We struggled, loaded and reloaded a couple of times and I finally called it quits, with the keyboard sticking out the open window of the back seat. We strapped ourselves in, only to discover that the keys were nowhere to be found. Mind you, it’s about 90 degrees in the shade and we are very tired.
I unloaded everything in the back seat one more time, asking God for help, as I almost always do for everything I lose. I was not seeing them and about to check myself into a mental facility when Dennis, the person who never finds anything, found the keys. He happened to see my purse on the floor on his side of the cab and looked in a pocket that I had not searched, and seldom used. They were there.
How wonderful to be used by God in a very unaccustomed role. We do what we can, but it is God who chooses us and equips us for what is needed. It made a nice resolution to a very frustrating time.
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…
Uncomfortable, but not uncommon. I think I did a fair job of not taking things too personally.
This is the fourth day of our visit to Dennis’s family in Pennsylvania. It has been a good time for us, overall. Today I am staying back at the house while Ron and Deanna take Dennis over to see his cousin Jim. I have one of my 3 day headaches and this is the third day so I should be good by tomorrow. I think it might have started because they only have decaf coffee here, but I’m not sure.
Last night was interesting. We had dinner out and were back at the house visiting – just the four of us- when Dennis started talking about his renewed plans to deal with the electricity issue. He had talked with Steve Dietz earlier and explained his whole theory (which to him is no longer a theory but a fact) and Steve followed along to the point of making Dennis think he totally agreed and understood it all. As he talked about how the condo was killing him, all his symptoms, the people at Penn State he was going to consult with, etc… it got really weird. He talked and talked and talked, in a very flat affect, soft voice and we mostly just listened. Every now and then I would give him a question to answer to clarify some of his reporting, but I didn’t say much.
And then it got into the personal stuff about how he was hesitant to take communion with me because we were supposed to “be one” and he could tell I was not completely supportive of his thinking, about me not letting him have his rightful authority. He reiterated his desire to go stay with Pam and Dale in Duluth (really bad idea) for a month or so because he was pretty sure two weeks of travel was not going to be enough to bring back all his faculties. Several times I gave opportunity to break it off because I was wondering if R and D were finding this interesting or uncomfortable. I finally put the communion stuff away and told him I had to go to bed, that I loved him and that I wasn’t going to stop caring for him. He quit and they all went to bed shortly after.
I am glad it happened this way for Ron and Deanna to understand what he does that is difficult for me. I think they could see how hearing this over and over creates strain in our relationships, especially with me and with my mom when we were living with her.
This morning he wanted a hug right away, and later as he went out the door he said he was sorry for last night. The worst times are usually at night and I think this is what is meant by “sundowning” perhaps? Deanna gave me a hug too. I think it has been pretty clear to all that he is changed from his usual self in a pretty sad way.
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.
We spent two weeks living in the travel trailer, in the
Smith Meadow. On the Sunday we left, we made it to church and heard a sermon
about Elijah. In the cave where he was resting/hiding, he heard God’s still,
small voice telling him to go back to a dangerous place and trust God for
protection. Dennis took that to heart and said “Let’s go back to the condo.”
There were other motivators, of course. He had started
having difficulty keeping warm at night, to the point of becoming near
panicked. He also felt isolated and a bit afraid when he was there alone. He
had started worrying about bears, although none have been reported there for
quite some time. He had started thinking
that there was an electric fence somewhere close that was wreaking havoc with
his eyesight and his hearing. Being
there was getting old and of questionable value.
I called him a few hours after dropping him off at the trailer and asked how he was feeling. “Afraid,” he said. But he was feeling God wanted him to face his fears. I went out immediately and picked him up, along with a load of our most necessary stuff. We have been back in the condo now for three full days. Symptoms have come and gone and although he has tried to link them to high water tables, electric fields and beaver dams being rebuilt, he is beginning to be confused as to the actual cause. Each time he starts to educate me on what he thinks is happening, and runs into a wall because I cannot be convinced, he sits and prays. He renews his resolve to trust God and comes to tell me that he will try not to be afraid. He always acknowledges that being back in the modern, more convenient world is better than being in the meadow.
Yesterday we went back, briefly, to retrieve the last things from the trailer. He didn’t want to go, but made himself face his fears. He was amazed when I told him there was no electric fence. He was amazed when he was able to step up on the deck with good balance. He was amazed when he was able to help put a few things in the truck. He was amazed when he was able to walk out of the meadow on uneven ground, all the way to the main road. “This isn’t really such a bad place, is it?” He said that with conviction.
Walking out of the meadow
“No, it was nice in many ways, and I wouldn’t mind coming back for a night or two, now and then…” which is really how I feel. In many ways, I love the meadow. It is a beautiful place to watch God’s creation. But, for now, I am glad to be back to one life, in one place, one day at a time.
Play time… what we watched on one of our last mornings in the meadow.
It started badly with Dennis being up nearly every hour throughout the night for varying reasons. By morning I felt sleep deprived and had a headache. He was ready to be up and taken to breakfast somewhere. This was the first time for leaving the trailer since Day 1 so I insisted he clean up first – shave and wash with water heated on the camp stove.
We drove into town and had a good breakfast, but had nothing to do after that so I took him back out to the meadow. For fun (but really because I could no longer stand the mouse smell) I cleaned the sky lights in the trailer. One had a nasty mouse nest in it and I ended up taking all the screens into town with me to clean them with plentiful water. My brother tells me that we have probably stayed in the trailer longer than anyone else, and little by little we are cleaning and fixing what we can.
Maybe I feel a little bit guilty when I leave the meadow to go into town for the day. Sometimes I come back for lunch, or on days like today I take him back around noon and he stays there himself until close to dinner time. He sleeps and eats and doesn’t seem to mind that there’s not much else he can do. At our condo, I enjoy modern day pleasures such as air conditioning and running water. When I come in the evening, it is his best time of the day. He seems pretty normal in his thinking and is usually moving around a little better as well.
We warmed up some soup and sat outside, watching the meadow as we ate. A deer walked across the far end, stopping every few steps to look at us. A hawk did a circle around the meadow and landed on the top of a tall pine, probably scoping out the newly mown field for rodents. There are small birds everywhere and the singing never goes quiet while there is light.
At times I think Dennis realizes that he’s not getting any better on a lasting basis, that there are only fluctuations, although he never voices that himself. Today he said he was glad that we had started long ago to prepare me to take over major responsibilities, like buying our vehicles, driving everywhere, making financial decisions and pretty much planning our future. It was kind of an admission that he doesn’t plan to return to those responsibilities.
At the same time he has lately been restored to hope with the verse from the Bible about nothing being impossible for God. (Matt. 19 verse 26 I think). Having just thought about that and asking for the reference in the morning, he brought it up a little later in a phone conversation with his brother Ron. His brother was surprised when he heard that because, as he was talking with Dennis, he had been reaching into his coat pocket to remove a stone that he carried around with him. Inscribed on the stone was that very same saying “with God nothing is impossible”. When things like this happen they are like affirmations directly from his Heavenly Father and they bring Dennis to tears.
As they say in my online support group, LBD is a ruthless, horrible and very sad disease. The only hope is knowing a God for whom nothing is impossible.
Well, it all bothers me because it is so sad and not what either of us wanted for our “golden years”. But what bothers me to point that I feel it in my gut, and play it over and over in my mind, is when he starts diagnosing me and wanting me to follow his advice.
Early on, in the magnesium stage, he would tell me that I was flapping my arms in my sleep and breathing funny. I needed to be on magnesium right away.
If I forget anything, even for a moment, dementia is setting in and I get a knowing look.
In the middle of the night I have found him standing by my side of the bed, insisting that I drink some water because he had a hard time waking me. I was dehydrating to death, I guess.
If I get sleepy during the day, it’s the electric field dulling my mind, pushing me into unconsciousness.
Last night he was frightened by how long I supposedly went without breathing and insisted that I get a cap to cover my head from the cold – the obvious solution. Nights are the craziest.
I tried to reason with him this morning and in the process he pointed out that, intellectually, I had to admit that when sleeping, how could I possibly be aware of what I was doing? I pointed out to him that someone who had bad hearing, limited eyesight, and tended to be fearful was probably not capable of making assessments in the middle of the night either, intellectually. It made no difference. I have to learn to listen and reassure, then dismiss so it doesn’t vex me for hours after. VEX, a word that even looks like it feels.
He woke two times during the night and the chief complaint was that he was cold. In spite of sleeping in his stocking hat, down shirt, hoodie, socks and pajama pants he was not getting warm under the comforter. It was a queen size and he had it all. I was in a sleeping bag with an annoying zipper that got stuck every time I had to get out to help him.
I don’t know what the temp was inside our trailer but the weather app said it was 59 degrees outside. His first remark, beside how cold he was, was about the sky temperature and one of his friends being right about radiant heat, blah, blah, blah… I had to laugh (inwardly) at his observation during the night when I was up helping him, standing around waiting in T-shirt and underwear. “I’m glad you have more fat than I do, to keep you warm,” he said. He followed up with a disclaimer that he didn’t mean I was fat, just that I had more fat than he did. I know he feels he has lost weight (can’t keep his pants up) but even with that the remark was funny.
My plan to warm him up was to get the truck going, stick him in it and go to breakfast in some nice warm place, with coffee. We were at the Robin’s Nest at 7 when it opened.
Sometime in the last few weeks he has lost sight of the reasons for eating Keto. Protein has become a naughty word because the Lewy bodies are misfolded proteins. It’s now complex carbohydrate all the way. He had a big breakfast of oatmeal and raisin toast and one egg. That’s why I was surprised, after a couple hours hanging out at the church, that he wanted to ask Mom to go to lunch with us. We picked her up at 1 pm and went to Norski Nook and again were stuffed.
In discussing the rest of the day, and picking Mom up, I discovered that he now doesn’t even want to be in the driveways of either of our condos. Five minutes, in the car, in the driveway sets his progress back. He can feel the electricity. I parked a distance away near the garden where he thought it would be okay but he told me when I came back that it wasn’t a good spot either.
Is this really our life for the future? In order to have any time in my own home I have to take him back to the meadow and leave him there. That’s what I did. He insisted that I bring my brother’s propane heater out, in case it’s cold again tonight. And tied up in all this, is the sky temperature which is evidently much colder than it should be because “they” are seeding it. Climate manipulation.
His most prevalent problem is with delusion and the “foggy” forgetful times. The delusion is persistent. The forgetfulness comes and goes minute by minute and always surprises me. Today he forgot how to get to the bathroom in the church, a place he has been dozens of times. He doesn’t hear because he won’t wear the hearing aides, and he sees more poorly all the time and comments about it. He is disabled to the point that he crows over things like being able to put on his shirt, or pick something up from the floor, or get out of bed by himself.
Last night I thought we did rather well. Dennis slept in one bed all night. He got up to the bathroom several times but seemed to be sleeping quietly the rest of the time. I hadn’t flipped the main breaker like I had the night before, so the electricity was on too and he didn’t talk much about feeling symptoms.
Nevertheless, this morning he asked how soon we could leave the house. I had agreed that we would ask a friend in Duluth if we could stay with them for a couple nights – just to see if being in their house, high on a hill, would satisfy the electrical sensitivity problem “we’re” having. They had extended the invitation, but I was considering the difficulty of getting Dennis up their long staircase to the one and only bathroom on the second floor.
Talking this over with Mom, after church, she suddenly came up with an idea. “Why don’t you try going out to the meadow first? It’s close, it’s high ground, and there’s no electricity at all.”
There is a property about six miles from town, owned by Mom as part of the family estate. It was part of the farm that I grew up on. It was always a favorite place for my brothers, especially the eldest of them, to hunt and just be out in nature. It’s actually 80 acres that’s about half field and half forest. Just inside the forested part is a large clearing that brother Ron has been tending. He has planted it with good grass, cleared trails in the surrounding woods and spends time improving it when he’s up on vacation. Along one border, tucked in close to the trees is an old house trailer, put there by my Dad, that the family uses on the rare occasions when staying out there overnight. I don’t know why I didn’t think of it before when searching for an unelectrified place. Probably because I didn’t really want to leave home at all.
So, I packed up some things and we came to check it out. Other than getting there and finding it was locked, we’ve had no real problems. We had to go back for the key, and I went back again for a few things that I forgot, but all told, the husband has been here for five hours now and is happy. He’s either been sleeping or eating, both of which have been hard for him when affected by the electric field at home. He claims to feel wonderful, although he still has symptoms which he attributes to all the damage that has been happening for the last two weeks since we moved into the condo.
I am very interested in seeing how this first night out here goes for him. No electricity, no water except what we bring in jugs, no working bathroom, and smelling like mice – but way better than any tent, for sure. It’s easy for him to get into, has a bed he likes, chairs, table and a couch. What more could a man want? Will this give him the opportunity to recover from LBD, like he thinks it will? Will this give him time to write his book? He thinks so and this is why he’s so happy.
The meadow is beautiful with waist high grasses. A moment ago I saw a deer strolling through, grazing as it went. It’s peaceful here. I just have to figure out how to fit this into the rest of life, if it’s the only way Dennis can feel good. Unlike him, I have other responsibilities, but at least I’ve been able to honor his request to “get me out of here!” I have to do this just in case there’s a chance that it truly is an electrical field that has caused him to deteriorate so rapidly.
Hope in the Face of Dementia 