LBD fluctuations

Conversation in the Night

/ Shirleyjdietz / 4 Comments

“Shuree, Shuree.”

“Shuree!”

I wake up suddenly. It is1:00 a.m., but it’s not very often he actually attempts to call my name and I can’t wait to hear what is happening.

“My pillow.” (said in his soft thick tongued voice which sounds almost like an accent. He never used to sound like this.)

“Oh, your pillow is on the floor! You lost it. Is that better?” (after arranging his head on the pillow again).

“I’m hungry”, he says, as he reaches for my hand.

“Oh no, and I’ve already given you extra before bedtime. I can give you some water though, and maybe a little “food” with it, in the tube.”

I warm up the water and take the leftover formula out of the fridge, load the bag and prime the tube, hook him up and start the drip. He wants to talk more.

“Are you happy?” (Something he’s never asked before).

“No, not really. I’m sad that you’re sick.”

“I’m not sick.”

“It seems like you are, but are you happy?”

“Yes, and I want a cup of coffee. Can you make a cup of coffee?”

“We don’t usually drink coffee in the middle of the night, when we want to sleep.”

“It would make me very happy if you would make me a cup of coffee.”

I can’t believe he’s asking this in such a sweet, almost begging manner. Of course I will make him some coffee. I do the Keurig thing and take it over to him. He has a spoonful.

“You can take a sip” he says.

“I’m going back to bed when we’re done so I’m not going to have more. I took a sip just to make sure it wasn’t too hot for you.”

“I called you here to see if you could make sandwiches for the men.”

This is an odd twist and I’m not sure where it’s going… “what men?”

“The men out on the street. I thought maybe you had sandwiches in the freezer and we could give them some.”

I remind him that he called me to get his pillow, and because he was hungry, but he remembers none of that. After I tell him again about the stroke and how his body doesn’t obey his brain anymore, he tells me I’m exaggerating. I count the months since he’s been unable to walk, or eat or do anything for himself. He stops talking and I ask him why – it’s because I’m arguing with him.

Asleep again.

I can tell the feeding is making him sleepy. He says his stomach feels better. I tell him that it was nice of him to think of hungry men on the street and want to feed them. He had about four tablespoons of coffee during our conversation, so I put the rest away, cover him, and turn out the light.

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The Husband’s New Job

/ Shirleyjdietz / 1 Comment

Dennis has a new job. I hope he’s up for it because it won’t be easy or short term. His job is surviving rehab.

Yesterday I made my way from the parking garage at St. Mary’s Medical Center, across the skywalk to Miller Dwan Rehab Center. Finding my way in a new place is always an adventure. Knowing and following all the rules challenges me, especially since Covid. Hospitals are built with mazes as their model and so many of the halls look the same. And it’s not like they have a lot of restrooms for the public either. I drive 90 miles to get to Duluth so I make it a point to find them.

A rehab hospital is an entirely different experience from an acute care hospital. I was so relieved at the quietness, low key atmosphere, soft voices and lack of hurry. The husband has a small private room with glass sliding doors, and it’s right in front of a nurses’ desk. He has a window and a nice bathroom. Since he still needs a lot of care, all the regular hospital extras are there – oxygen, suction, monitors and computers, lifts and a fancy bed.

The social services worker assigned to Dennis talked with me, both to get information about our home situation for eventual discharge, and to give information about his stay. We already knew he would be getting about three hours of therapy per day from physical therapy (PT), occupational therapy (OT) and speech language therapy (SLT). There will also be talks with psychologists, chaplains, social workers and of course, the doctors. They all meet weekly on Tuesdays and evaluate each patient’s progress. The social worker promised to give me a report each Tuesday after their meeting.

At this point, they estimate Dennis will be with them for 60 days. I am not surprised that it could take a long time because Dennis is at zero on the independence scale right now. I am surprised and relieved that they are willing to take him for that long as it will give me time to prepare for where he goes next. I am hoping our insurance will cover that amount of time. I haven’t checked yet, and I guess that will be my new job.

Good to be wearing T-shirt and pants again.

No time was wasted by the therapists. They have all had two or three sessions with him during these last two days, mostly to evaluate and set up their plan. He is an exhausted guy and it worries me to see him looking and acting so very tired. Before the stroke he was walking, talking, feeding himself and doing many of his daily activities without help, but I also have to admit that he was already tired and taking frequent naps. What kind of improvement can we even hope for now, given all that he’s been through in the last four weeks? But this is humanly thinking and I thank God that we are not limited to that.

I can tell that Dennis has had a lot of time to think, at night especially. He is often uncomfortable, or cold, or sore from his position which he cannot change himself, and unable to find his call button to get help. As his mind clears he is more aware of his predicament and has started looking for someone to blame. He has landed on himself.

“If only I hadn’t been so stubborn about wanting to do it my way. I didn’t want to take those blood pressure meds. This is all my fault. ” I did my best to talk him out of that one, reminding him that even when he took the pills he had alarming hypertensive spikes, followed by hypotensive lows that nearly made him pass out. But, I totally get what he’s feeling because I also went down that road, feeling that I should have made him take his meds. It could easily be my fault too.

When one of the therapists asked how far I was driving and how often I came, he remarked “I don’t know why she stays with me.” I have never heard him say anything like that before and was actually a bit shocked to hear it. I told him I was sticking around until January because I wanted to be able to say I’d been married for 50 years, then I’d be leaving. Did he laugh? I couldn’t tell.

So you see, he is having to deal with some heavy emotions. He hasn’t been one to admit to depression, even since the Lewy Body dementia diagnosis. I am hoping some of the rehab deals with the natural depression that anyone would feel if they suddenly became weak, helpless and out of control in every way. And I will be reminding him to look ahead as God guides him into a purposeful future.

July Journal: 2022

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Things seem to go on forever the same, until they suddenly don’t.

It was a pleasant summer evening. In an attempt to improve my own perspective, I was out having dinner with a couple friends and my mom, in a noisy environment, when the waitress asked if it was my phone that was ringing. It was.

Dennis had been found on the floor by the helper who came to fix his dinner. She called my brother and together they called an ambulance to get him to the ER. He had signs of a stroke.

I don’t think he was on the floor for long, and he had no fall injuries. In fact, in the telling, he was very proud of how he had let himself down carefully so he wouldn’t get hurt. Did I not get him an emergency alert necklace for just times like this? Yes. It spoke this message to him “Fall detected, press and hold to cancel”. So, he pressed and held and cancelled. He was planning on getting to a chair, getting himself up, and recovering. He didn’t want to fuss with the outside help.

He was taken to the ER in our local hospital. They confirmed a hemorrhagic stroke with a CT scan and immediately called an ambulance to take him to a stroke center 90 miles away. I talked with him before they left. He didn’t have severe symptoms – just some left sided weakness and loss of skin sensation. Maybe his speech was a little difficult to understand, but he mumbled a lot anyway and this wasn’t much different.

I followed the ambulance up and was able to see him safely established in his room, hooked up to all the necessary monitors. His blood pressure which had been 225/135 was being carefully kept below 140/90. Another CT scan that night showed no further bleeding apparent.

Things had changed, suddenly. I always knew stroke was a possibility with his blood pressure spikes, which happened frequently. He had stopped taking his meds because he had a period of relative stability without them. He didn’t like taking pharmaceuticals, and I didn’t argue with him since the meds seemed to make no difference. He was equally unstable with or without them. In hind sight I wonder if we could have prevented this, but that is not to be known.

So, on July 26, 2022 Dennis traded his recliner for a $50,000 bed in a neuro trauma ICU. And this was just the start.

This was not the $50,000 bed but it was a pretty expensive recliner.

And Then Again, Maybe Not…

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I don’t think he had a stroke (see previous post). I think it was one of the expected fluctuations of LBD. For a day he had difficulty thinking fast enough to speak, and getting words out, but now he apparently has recovered. Last night he held a phone conversation without trouble and today he enjoyed a long talk with a new friend. I could see no effect from his temporary lapses.

I also asked him if he felt recovered, and he thinks yes, he has. He’s physically slow but mentally back to par (for him).

Just like his blood pressure has dramatic spikes, followed by strange lows, the other parts of his nervous system experience blips in their function. Sometimes it’s his eyesight, sometimes bowel function, often it’s coordinating his movements. I’ve heard it described as a roller coaster of symptoms and it does seem that way. We just don’t know what to expect next.

I think it does help to pray and have a positive attitude. I’m grateful it does not seem to be the “fall from the cliff” that I thought it might be.

What Next?

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February 24, 2020

Is this going to be the end of our half year of stability? I hope not, but things do seem to be getting a little weird lately. I really think the protocol the husband has been on has done good for him so it will be a disappointment if we run into trouble again. Going backwards is not fun.

In November when he had the DVT, he was put back on blood pressure medicines because he was very hypertensive. An additional one was added a month or so later because he was still running high. Well, his readings started coming down and then he began having times when it was low enough that he would feel dizzy and weak. I took away the diuretic and that helped somewhat. Now it is low more often and we have started cutting the last BP med in half. It might be that we are back on the autonomic nervous system “roller coaster”.

He has also noticed more hand tremor, and it is affecting both hands now. Because all this is worrisome to him, he has started back on his research in earnest. That, and watching all his favorite TV preachers every day keeps him quite occupied. He is still thinking logically, and his temperament is good, but I’m thinking this could get very obsessive, if not delusional. I’m so hoping NOT because…

I’m taking some time away in March to be with my daughter in Seattle. My brother Gary and his girlfriend Lyn are coming to stay in the house with Dennis. I’ve assured them that he doesn’t need actual care, just some oversight and help with meals and questions about where things are. Nothing about travel is easy here. With the arrangements I had to make to get to the airport, Dennis will end up being by himself for about a day and a half before Gary arrives. There are others who can look in on him. I’m counting on this to be okay.

At first I thought we might both go on the trip and Dennis was surprised and trying to adjust to the plan. When I told him he didn’t have to go, he was somewhat disappointed, but also pleased that I thought he was well enough to stay home without me. I don’t think it’s making him anxious. I could be wrong.

New things include some fancy probiotics and liposomal glutathione which the functional medicine doctor (Nan, she asked to be called) has prescribed. Correcting what is happening in the gut is very important to her. We are also giving “gluten free” a trial. The dining room table has a growing collection of bottles and containers now, which I’m not too happy about, but it’s too much trouble to put it all away in between uses.

I should get him walking/exercising again. We did so well for a week or two and then we started having to avoid germs and being around people with colds. We have a family member in cancer treatment who has low immunity. I know we can’t stop living normally – she wouldn’t want that – but at the same time it would be awful to be the ones causing a dangerous infection of some kind.

All for now. Can it be spring is almost here?

A Problem Walk

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10-2-2019

After several weeks of stability and no new problems developing, I was surprised by what happened today.

Dennis decided he should go for a walk. It’s been cold and rainy, making it easy to stay inside without really planning to avoid exercise. He realized his walks had been infrequent. He also has had trouble sleeping and staying asleep and thought the exercise might improve that problem.

I noticed right from the beginning that he was walking slowly. He had to be reminded every few steps to pick up his feet and walk instead of shuffle. We got to our turnaround point and he began to lean to his right and couldn’t straighten up. The steps got shorter and he said he had to stop for a minute.

I thought his posture might be making it more difficult to walk because at this point, he was leaning back and to the side, with his belly thrust forward and his knees always bent. It was very strange and he couldn’t correct it, but he insisted on “walking it out”. A few steps later he was locking up and hardly able to move so I ran back to the house for the walker with the sit down option. He tried to walk with it but soon gave up and sat down. He pushed himself backward, seated in the walker, all the way to the house. He even had trouble with that. It was very odd.

He was also puzzled, but decided that he had gone too far and had simply gotten tired. He was glad to be back in the house, resting in a chair that he could easily get up from.

This whole episode was very Parkinsonian in nature. I have thought that perhaps he was getting better, reversing some of his symptoms affecting mood and cognition. That may still be the case but this is a setback toward a movement disorder. It’s unsettling to me. I have been counting on him being able to move himself. If he loses that ability I don’t know if I can care for him without more help. Not good.

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.

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.

What Will Today Bring?

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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.