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.
Lewy Body Dementia
Father’s Day 2019
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…).
Not so long ago he would never have been caught using this. Now it is his best friend.
Taking It All In…
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
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.
Voltage Problems
6-4-2019
He’s just going to live outside from now on…
Two more days have passed since the husband had his first major meltdown about the electrical energy in our house. Things have not gotten better since. He has honed his theory about the natural voltage between the sky and the earth affecting him bodily. He feels it the minute he steps into the house. He has caught the idea of “earthing” and grounding himself to the earth, which he knows is going to help him feel so much better.
The day before last, he sat outside (where he felt safe), fell asleep and got a horrible sunburn on one side of his face. It blistered and was weepy, then crusty. He didn’t want to sleep in the house at night unless we turned off all the electricity. I did it for the sake of getting some peace. He kept saying that if he had a good night, that would prove it was the fault in the house causing the problem, as if there were no other reason that could cause his condition to change suddenly.
He is pretty much in denial about his LBD. He doesn’t quite realize that apart from a healing miracle, he is dying of dementia. It happens. He still tells people he is getting better and will once again do the things he has done, like playing his trumpet.
He went with Mom and I to Duluth today, for an appointment with Mom’s dermatologist. With his sunburned, damaged face he looked like he was the patient needing help. On the way home he was looking out the window at the sky and saw what he thought was a cloud formation, man made. It was quite diffuse and included jet trails, wide and fading, that fanned out like the spokes of a wagon wheel. Later at home he heard there was a bad storm near Duluth. Right away he attributed it to the government experimenting with weather control – the chem trails and clouds proved it. They were too unusual to be anything else. He spent the rest of the night looking up articles and people who would attest to what he thinks is true.
Some of the articles are on earthing – walking around with bare feet in contact with the ground. From there he went to wanting to order a special blanket that acts like a Farraday cage, which will protect him from voltage. Every time he stands up he says “okay, I’m about to get full voltage again…”
I don’t know what I’m going to do. He said he could not live like this (and I agree, totally). He talked about renting a different apartment but I can’t see that another building would be any different from the one we are in, built to code recently. I told him I wasn’t moving.
I’m not sure what he decided, but he has come up with something that has enabled him to go to sleep in the bedroom. I don’t think he has noticed that I turned the electricity back on. I noticed that he has not been fixated on his supplements lately, and he doesn’t eat as much as usual either – big changes for him.
Endless Discussions
5-27-2019
Yesterday, because I was visibly sad, the husband and I had several conversations about our relationship. I tried to tell him, without being harmful, why it is that I have trouble deciding to take him seriously, or relying on his decisions and assessments. I know it must be hard to hear that kind of thing. I don’t think he understood and he still thinks that I am wrong in taking his LBD diagnosis into consideration. He thinks everything points toward his recovery.
We had discussions about the CO alarm at 4 am, which he is sure is because of variations in the power grid. We should call the power company and have them do something about it – I don’t know what. We had discussions about tithing the proceeds from the sale of the house, about how to identify where the Lord wants tithe administrated, about who can decide these things. We had discussion about the supplements he ordered and wants to return, thinking he doesn’t need them because he is no longer on blood pressure meds. There is no trace of who to get that money ($250) back from that I can find, and he is useless in tracking things on his phone or computer.
He went to church – two services – yesterday to hear piano player Huntley Brown. He sang his heart out and greatly enjoyed the music and worship, but was totally worn out by the effort. He got tired in the morning just making one side of the bed. Somehow the tiredness became my fault for helping him do it. Aunt Lois is also tired all the time because I help her too much, keeping her from getting stronger.
In many respects he is like a child in an old man’s body. I can tell when he is coming by his slow, shuffling sound. He always appears very old and slow. He does unusual things, like standing up in church and directing the music, waving his arms but he is innocent and entirely abandoned in his actions – no shame, but joyful and unaware of strangeness. He doesn’t care what others think or how they perceive him and that is the child part. I don’t want to take that from him, but it puts me in the position of being a caretaker over someone who is not quite “with it”, rather than a partner in an equal relationship. I have to be the one who considers all sides of an issue and whether to affirm or deny his course of action.
In all our discussions, I primarily wanted to be understood but I don’t see that it happened. To his credit, he was always sincere and soft spoken, which was helpful. I took a walk late in the evening and encountered Den and MP, who joined me. They listened to me and I was comforted just to know that someone cared about my tears and would let me talk.
I struggle right now with a sense of displacement. The house has been sold. We are to leave Mom’s condo and set ourselves up in the other one. We need to decide whether to get our stuff in Greensboro transferred up here. We need to start paying rent. Everything about our situation seems to have changed and I’m trying to sort it all out. I need God to reassure me that we are here for a reason and that we are still in his will and plan for us. I have attitudes and feelings that I’m not comfortable with but don’t know how to dispel.
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Taking a Vacation
I took one. It was planned last year, involving expense and arrangements with other people so I could not easily change the plan, although I considered doing that. To be gone for seven days required more effort and stress for others than I had thought it would.
I am glad that I had the foresight to ask youngest daughter Esther if she could come to stay while I was gone – to keep her father company, and to help her grandmother not feel the whole weight of socialization. I also wanted feedback on my own observations and assessments. I don’t always know if I am seeing what I think I’m seeing, or if I’m just being impatient and somewhat biased because of my closeness to the issue.
There were hard moments for both of them – Esther confirmed this – but overall she did a great job of making him happy, helping him feel guided and informed. She gave him tips on calming himself, on exercising with dance, and being lighthearted and silly as therapy. They talked. They did things together. It was good for him and good for their relationship. I am grateful for all she supplied, but also aware of the cost for her. Taking solo vacations is probably not something I will be doing a lot.
However, we can take vacations together, the husband and I. And that will be another adventure, I’m sure.
What Will Today Bring?
That is what I think to myself each day as I wake and take stock of the time and where the husband is. Today he was asleep initially, got up once to visit the bathroom, and then went back to bed until nearly 10 am. Even Mom was wondering about him and asked me how he was – was he alive?
As I watched him get out of bed, he told me he wanted to see David Kelling, the chiropractor. He was pretty sure that what he ate the night before was not good for him. He had decided that the meatballs must have had pork in them and he wanted to find out if David knew how long it would take for him to purge himself of the effects. The effects had mostly to do with his fatigue, and sleeping longer than usual. “Clean” and “unclean” has increased relevance to him since watching one of the TBN preachers on the subject.
He decided that fasting was the order of the day for him, but he did want to pray with me for the meal I was having for breakfast. He remarked about how different it was for him to be praying for my breakfast, but his fast – that it would be a good one. For several minutes I was able to distract him with news of people we had known in Florida, but soon we were back on the subject of health, only it was now my health. According to his observation I thrash around in my sleep a lot, and he is unable to wake me lately, to get me to stop.
Behind this topic is his supposition that I have REM sleep disorder, which means I’m just like him only a few years behind in my progress. My symptoms should move me to take more magnesium, quickly.
He was able to sit and lift one leg up onto the opposite knee without using his hands to pull it up. He is doing this the last couple of days, meaning that he is improving his strength and flexibility. Everything he does better than the day before is because his therapies are working. Everything he does worse is because of something he did wrong – the wrong supplement, the wrong food, not enough exercise… The fluctuations are never because of LBD and its usual course. Sometimes he looks sad and he may be thinking of the LBD, but he does not acknowledge it.
I looked at his blood pressure log yesterday and noticed that he hasn’t recorded anything since 12 days ago. This was an obsession not too long ago, needing to be done every time he “felt” any change. I don’t know if he’s forgotten or if he believes his pressure is normal now and no longer needs to be monitored – since he stopped taking all his medications. Yes, he did that. Dr. Chambers told him it wasn’t the smartest thing to do since he still had some high readings and having a stroke would put an end to all his other therapies. He didn’t agree. He is getting better.
In spite of getting better, he has come out for help putting on his shirt, and just came out to tell me what a terrible time he had putting a different belt through his belt loops while trying to keep his shorts on.
He has taken to heart what he heard from another preacher on TV, about being selfless and thinking of others. Twice this week he has insisted upon riding in the back seat of the car and letting Mom have the front. He makes sure it gets talked about.
Faithfulness
04-03-2019
So tired.
Last week we went to church and sang “Great Is Thy Faithfulness”. As he began to talk to us, the pastor wanted three people to tell of God’s faithfulness in their lives. I always jump up at this kind of invitation. It’s not that I have it in mind to say a particular thing, but I know God has been faithful and I should say so. I stumbled around a bit, explaining the difficulty of moving to a new area and then getting word that my husband has dementia. It has had its depressing moments, circumstances that we weren’t happy about, but we go through each day, able to find the goodness of God toward us. I said something to that effect.
As I finished, the husband raised his hand and said, in his “Lewy voice”, “and I wouldn’t have it any other way”. I know what he meant by that. We have talked it over numerous times. He has felt an actual friendship with Jesus and had dreams (I think he would call them that) where he’s been given words to think about and investigate. Jesus knows he’s a scientist and loves to figure things out, so he gives the husband clues, that lead to more clues. If he gets stuck and doesn’t know what comes next, he asks and waits until Jesus tells him more. He’s very touched by this friendship and gets emotional relating the details.
It’s never been his choice to have this diagnosis, of course, but knowing that God has allowed it for a reason, he is accepting it. The resulting relationship with God, and with friends and relatives, has enriched the experience beyond what he would have expected in life. In that sense, he really wouldn’t have wanted it any other way, because it probably wouldn’t have happened any other way. God knows how to make happen what we need to have happen.
It’s All Connected
3-30-2019
This is a list of links to articles that the husband has been reading and discussing with his brother for the last couple of months. I intend to read them one or two at a time and try to summarize what they mean, in addition to what they mean to him.
His research often starts with a symptom he’s experiencing and trying to understand. He uses google on his phone and reads, then he forwards the link to his brother who is a retired university biologist. One article will lead him to another one, and there is always a connection to be made to the next thing. Sometimes I can see his reasoning and other times I think he’s stretching things a bit. A common thread is that he believes many of his symptoms have something to do with magnesium deficiency.
Magnesium is needed for so many functions on the cellular lever that a deficiency could affect any organ system in the body. He believes correcting the deficiency could reverse the damage in the brain that causes diseases like AD and LBD. That’s what he’s trying to do.
http://www.LBDA.org The Lewy Body Dementia Association, nonprofit, national
https://www.aging-us.com/article/100690/text#fulltext This is the article about reversal of cognitive decline that gives the husband hope
https://www.ncbi.nlm.nih.gov/pubmed/11850416/ this is where the interest in magnesium began
https://www.sciencedaily.com/releases/2011/01/110110103832.htm all about nitric oxide’s influence, enhance NO may prevent inflammation
https://www.fasebj.org/doi/abs/10.1096/fasebj.31.1_supplement.1035.4 he tries to figure out why eating cheese gives him a sensation in his head
http://milkgenomics.org/article/magnesium-milk-overlooked-mineral/ about how milk is a good source of magnesium and how magnesium has to be present for vitamin D to be processed
https://www.ncbi.nlm.nih.gov/m/pubmed/1390610/ soy beverages decrease the bioavailability of Mg and Ca
https://sciencing.com/red-clay-22940.html red clay interest him, however magnesium levels are low in clay because of leaching
https://draxe.com/10-bentonite-clay-benefits-uses/ the uses and actions of bentonite clay, a source of magnesium and a chelating agent for heavy metals
https://www.drperlmutter.com/bone-broth-benefits/ nutrients in bone broth such as collagen and other proteins contribute to skin health and gut health
https://www.ncbi.nlm.nih.gov/m/pubmed/10454449/ magnesium and autonomic cardiovascular regulation, hypertension
https://mail.google.com/mail/ca/u/0/#starred/FMfcgxwBVzsNPrgBfflvCRmRJSpkvsfg?projector=1&messagePartId=0.1 pdf of magnesium rich foods
https://www.thoughtco.com/laughter-therapy-verse-of-the-day-66-701910 laughter promotes health, use in relieving depression
https://www.rnareset.com/products/remag-magnesium-solution?variant=13899661319 magnesium in a more bioavailable form from Dr. Carolyn Dean – ReMag
http://researchpub.org/journal/jbpr/number/vol1-no2/vol1-no2-2.pdf Rapamycin and autophagy as potential treatments for AD
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4203545/ autophagy contributes to limiting viral
pathogens
https://mail.google.com/mail/ca/u/0/#starred/FMfcgxwBVzrDtTxvLjhzbxfQDNnddRxD?projector=1&messagePartId=0.1 dietary buffers for dairy cattle – no clue why this is relevant
https://triggered.clockss.org/ServeContent?rft_id=info:doi/10.1124/mi.8.5.2 the brain, PTSD, TBI
https://mail.google.com/mail/ca/u/0/#starred/FMfcgxwBVzrCxWxJpDWHlDzrwLfNNQrV?projector=1&messagePartId=0.1 this is a good one on magnesium deficiency, why it’s widespread and dangerous.
https://www.dietdoctor.com/renew-body-fasting-autophagy doctor get Nobel Prize for discoveries about autophagy. Fasting and autophagy to rid body of damaged/broken cellular components
https://www.healio.com/optometry/nutrition/news/print/primary-care-optometry-news/%7Bf857ffe3-f195-4455-9040-4f353e311c9b%7D/pilot-study-data-indicate-macular-degeneration-responds-to-nutrition the role of nutrition and supplementation in macular degeneration
https://draxe.com/varicose-veins/ Varicose veins, home remedies and nutritional advice
https://www.viviscal.com/hair-care/magnesium-for-hair-growth/ magnesium deficiency can lead to hair loss and scalp problems, dietary and supplemental Mg can have positive effect on hair growth
https://articles.mercola.com/sites/articles/archive/2017/11/26/fasting-powerful-metabolic-therapy.aspx magnesium for maximum heart health
https://www.youtube.com/watch?v=kZFa-yw3znE Dr. Carolyn Dean on magnesium
https://www.youtube.com/watch?v=TDAjQFPiAIs&feature=youtu.be Dr. Carolyn Dean on fibromyalgia and CFS
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4455825/#__sec7title Magnesium basics, importance of Mg in numerous body functions
Hope in the Face of Dementia 