caretaking

Hospitalization #1

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11-16-2019

Dennis has had a lengthy time of stability – a couple of months with no delusional thinking. In fact, he seems to be doing better cognitively, having read a couple of books that really interested him and comprehended them. He does a lot of TV watching, and for a while it was only sermons on TBN because violent shows or even the news was too traumatic for him. Now he’s back to watching the news and some documentaries, and that is almost back to pre Lewy normal for him.

Back on November 1, in the morning, Dennis met me in the hall as I was going over to check on Mom. He said his leg had felt funny during the night when he woke up – not exactly painful, but swollen and harder. I felt it and agreed that it was slightly larger and warmer to touch. It was worth sending a note to the doctor (my Health app gives access) and they messaged back that he should be seen in the clinic. He got in by 11 am and they decided to check for DVT with an ultrasound of his leg. We were walking over to radiology when he got faint, diaphoretic and couldn’t go further. I got him a wheelchair and we made it to the ultrasound. He felt better by then so the tech did the procedure while I watched.

They saw an extensive DVT and sent him to the ER right away. I was impressed with the number of people who practically mobbed him. He was hooked up to all the monitors in no time flat. The ER doc sent him for an CT scan of the lungs and it showed multiple emboli in both lungs. So it wasn’t long before he was put on anticoagulants and admitted to the hospital.

The whole ordeal sent his blood pressure sky high too, so he was put back on medicine for that as well. He stayed for two days and was discharged on Sunday afternoon. All this to say that he has been tired and weaker than usual, even though his cognition has seemed better. He stands and walks like a very old man, his right hand is afflicted with a persistent tremor, and everything he does is slow, slow, and slower.

He had a follow up appointment this week and when getting ready, he was commending himself for showering and dressing himself without help. Is he getting somewhat more independent? Maybe.

From time to time he puzzles over his “words” that he is sure God has given him, and tries to reassure himself that he hasn’t made them up. A couple of days ago he had an “aha!” moment over the word “proteolytic”. It has been harder to figure out than some of the other words and he hasn’t been able to attach it to any certain function, until now. It was brought to his attention after the CT scan that he had some sort of mass showing on his stomach which will need to be addressed after he is done with the anticoagulants. He started thinking maybe there would be a connection to the proteolytic enzymes, and sure enough, he found an article where someone’s stomach cancer had been eradicated with bromelain, an enzyme in pineapple. So God had him working on his stomach, eating pineapple and taking proteolytic enzymes way before he even knew he needed them. He’s expecting the mass to be gone by the time it’s investigated.

He is not exactly at the place where I feel he would be safe alone at home. He doesn’t find things easily, including food and clothes, so it might be awkward if I left for any length of time longer than a few hours. I cancelled my trip to NC for a writing conference and watched it online instead. Maybe if he had to take care of himself, he would rise to the challenge, but I think it would be hard on him. I think it’s going to be a long winter with a lot of staying home for us.

A New Normal to Be Enjoyed

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9-24-2019

We are continuing in a pretty pleasant place for several weeks now. There have been no big changes, no unusual delusions or fears – just a slow and steady movement toward a routine and a “new normal” life.

It has allowed me time to finish the garden and do some canning and freezing. I’ve become more regular at cooking meals and even sharing mealtime with family once or twice a week. I’ve bought a few things for the house, which some people call “nesting” and we’ve settled into our two bedrooms. It works fine to separate us at night since we like different temperatures and wake at different times. I get much better sleep this way. This is all possible because Dennis’s back pain has resolved and he is able to manage himself by himself. He is able to get in and out of bed, adjust his own blankets, and get to the bathroom without my help.

Also, another delusion was discarded yesterday. It has started to bother him recently that he misses so much of any conversation. He was investigating buying new hearing aids of the old analog style, ones that wouldn’t be beaming microwave radiation into his head. Somehow he convinced himself that the tube going into his ear was just a sound tube (which it is) and that it was perfectly safe to put his old hearing aids back in. Some articles I’ve read do express concern about the small amount of EMF emitted by the part of the hearing aid worn behind the ear because they are worn for so many hours every day. I am not directing him to those articles.

He has decided to go with a mustache and beard instead of trying to shave every few days. Last week we went into town and he got a professional haircut and beard trim, something he has hardly ever done. I have cut his hair ever since we were married so it was kind of a treat for me too. I thought he looked pretty good.

He reads a little bit again. He watches TV a lot – only shows that don’t upset him. He takes short walks without the cane or walker, eats his meals without trouble, and has been much easier to converse with. He seems a little more aware of his appearance. His blood pressure has been lower on a regular basis. All this is good and we will enjoy it as long as it lasts.

Is any of this due to taking magnesium, following a largely keto diet, and being healthier? Is it a slow healing in answer to prayer? Is it only a fluctuation in the course of LBD? I don’t really know and am wondering. Time will tell.

Because I Can

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8-17-2019

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.

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.

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.

Taking It All In…

/ Shirleyjdietz / Leave a comment

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.

Voltage Problems

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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.