Lewy Body Dementia

When It Doesn’t Happen

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I have no hospital picture for today. Instead I took this shot of our meadow while walking, thinking and praying about handling disappointment. Sights like this speak God’s goodness to me.

Today Dennis was supposed to have a PEG tube for feeding inserted into his stomach – a procedure done in the radiology department under light anesthesia. It didn’t happen.

I had explained what it was and why it would be better than the nasogastric tube he’s had for weeks now. I played it up because I think having one less tube going down his throat might help him swallow better and eventually be eating and drinking normally. We were looking forward to having it done. By that, I mean Dennis was looking at the clock on the wall in front of his bed and asking every few minutes if it was time yet.

A few minutes before the appointment, a nurse came in and told us he had been rescheduled for the first thing tomorrow morning. They had several emergencies that took precedence. They were sorry. I was sorry.

Preparing for this procedure included having nothing in his stomach, so he had no feedings all day and the night before (via NG tube) and no IV fluid, and no ice chips as he had been having before. He was feeling very dried up. Since his new appointment is early tomorrow morning he won’t be getting anything tonight either.

All I want to say here is that we are getting used to disappointments. All they mean is that we didn’t know what God’s plan was. We now know a little more about the next right thing he’s doing for us. Accepting that does a real correction in my perspective. It makes waiting and trusting way easier.

On the Bright Side

On the bright side, today he was able to lift his right arm and bring his hand all the way to his nose to scratch an itch. He didn’t think of doing it himself, but when I suggested that maybe he could, he tried. I only helped him a little. Later he did it again to show the nurse that he could. He also shifted his upper body a little in bed, readjusting his position, which he has not been able to do prior to this. You may not understand why I am so happy about these small victories, but they are big changes in the right direction. Trust me.

I am praying that everything goes smoothly tomorrow. I hope to be up at the hospital, in his room when they bring him back. It’s been a while since I’ve seen his face without any tubes. I’m ready for that.

Moving On and Out of ICU

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“I think I saw a green cat, sitting on my shoulder. Was that a dream or a hallucination?’. Maybe, I thought, or it could have been the little guy filled with rice (as a heat compress) that Esther bought and gave to you when she visited.

Dennis was in the ICU for 27 days. I felt like I was there too, and I was, nearly every day. Of course, the respiratory arrest and having to go on the ventilator was the worst complication of his stroke. The other important issue was his blood pressure, which was probably the cause of his stroke. That had to be stabilized to prevent another brain hemorrhage.

Unfortunately, unstable blood pressure has been one of Dennis’s problems for a long time, and was probably one of his first symptoms of Lewy Body Dementia. The IV med he was given right away, worked very well but as the amount was reduced, he would begin to have episodes of hypertension again and it would be increased. Eventually he was started on an oral med that was crushed and given through the nasogastric tube. When that didn’t take care of the spikes he was put on a second oral med. Then the amount of the first med was doubled. By his last day in ICU he was taking Norvasc 10 mg, Coreg 6.25 mg, Ismo 10 mg, Cozaar 100 mg, and a diuretic, Lasix 20 mg – all of which were for his blood pressure. Pretty impressive for a man who doesn’t like to take pharmaceuticals. He still has a spike now and then, but it was decided that he could have a higher “normal” as long as it didn’t result in 225/125, like it was on the night of his stroke.

Having weaned off the ventilator and having stabilized blood pressure readings for a couple of days, he was given a second swallowing evaluation. He didn’t do very well. That means he will be a long term tracheostomy patient to protect his lungs. It means it is still not safe for eating or drinking, two of his only remaining pleasures in life. But medically he was ready to move to a step down unit.

Every change causes some measure of anxiety. For me, the worry was that he wouldn’t be able to get help when he needed it on a unit with higher census and less staff. He still wasn’t able to move either arm enough to find a call light. He wasn’t able to move himself in bed at all. He couldn’t turn his head to see anything he tried to locate, he couldn’t speak unless someone deflated his trach cuff and placed the PMV valve. He was often lethargic, but becoming more aware of aches, pains, stomach rumblings and the need to cough.

I was called one night at home and told that he had been moved to a medical unit on another floor. The nurse working with him informed me that he was on the same kind of monitoring as in the ICU, and had a private room with a camera that allowed supervision at the nurse’s station. It actually sounded pretty good to me, and I was glad that he would be in a private room where it would be quiet and less confusing. I visited the next morning and was very pleased with his proximity to the nurse’s station and the attitude of the staff taking care of him. We practiced using a squeeze ball call system until he could work it correctly, and the PA directing his care gave permission for him to have the PMV valve in as long as he could tolerate.

There are always more mountains to climb however. The PA also told us that his inability to manage his secretions meant that he would need a more long term solution to nutrition and meds. The nasogastric tube could be replaced with a PEG feeding tube going directly into the stomach. This might also help his ability to swallow since it would mean one less tube going down his throat. He and I both felt this would be an improvement, although it will mean another exposure to anesthesia. It will take place tomorrow. I hope it won’t put him back into lethargy and brain fog, since we have just begun to make progress to more wakefulness and clarity.

In the back of my mind is the question of where he will be taken care of after hospitalization. They are already talking about nursing home placement and I know this is not going to be fun.

Surgery – the Second Assault

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This may be more detail than you want to know, but I want to remember and this is how I do it.

Toward the end of the second week in ICU, after nine days voiceless with the endotracheal tube and the ventilator, it was becoming apparent that Dennis’s respiratory problems were becoming long term. To prevent damage to his vocal chords it was recommended that he undergo surgery for a tracheostomy.

Having heard many scary stories of what general anesthesia could do to the mental status of Lew Body Dementia patients, I was worried. But at least the surgeon listened well to my concerns, so we went ahead and had the surgery. It took longer than planned. The surgeon did say there was a bit of trouble but the surgery was successful. Dennis’s face was now free of the tube in his mouth and all the trappings to hold it there. Red abrasions on his cheeks and a very dry mouth would have a chance to resolve and heal.

However, the wound in his neck and the tracheostomy tube were pretty brutal looking too.

Multiple days with this contraption can make a lot of soreness
Tube is gone. Esther asked him for a smile.

One of Dennis’s main problems was that the stroke damaged his swallowing muscles. Secretions like saliva were not being swallowed down his esophagus like he thought. They were going into his trachea and his lungs and there was danger of pneumonia. He needed frequent suctioning of the trach tube and of his mouth. Fortunately, he had a good, strong cough, and they started him on antibiotics to prevent pneumonia.

They tried several times in the next few days to wean Dennis from the ventilator. Each time it wore him out and he could only tolerate a few hours without the machine. Eventually he was able to use less help – the vent was used more like a CPAP. He would initiate his breaths but the machine would do the work of delivering the air. By day 24 he had been off the vent for 48 hours and was only getting humidified air and a little bit of oxygen.

One of the best things during these days was hearing him talk again. On day 20 in the ICU they plugged the trach tube for short periods of time so he could speak to me. He wanted coffee – big discovery. One of the things about his brain injury is that he doesn’t realize the seriousness of what has happened. He talks about wanting to eat and drink, not realizing that he is being “fed” through a nasogastric tube. I spent much of my time with him feeding him ice chips and then suctioning them back out again after they melted.

Things he has told me:

“If Ryan (son-in-law) was here he could help me stand up.”

“Untie my hand so I can hold a cup.”

“Sweet corn and tomatoes!” (after talking about garden with his brother.)

“My butt hurts.”

“More ice chips.”

“How is _____? (He remembers and asks about everyone.)

“I love you.”

“When are you coming back?” (Aww…)

ICU Delerium

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Dennis was admitted to the Neuro-trauma ICU of St. Mary’s Hospital in Duluth MN, 90 miles from our home in Hayward. It was past visiting hours but after they got him settled in they let me come in and see him. I watched them do neuro checks on him. He was weak on the left side but there was movement, and his face didn’t seem asymmetric. He was joking with the nurses, telling them all about how it felt. He was still on IV medication to keep his blood pressure in a safe range.

I stayed overnight with a friend and was back the next morning. Not much had changed as they tried various meds to keep his blood pressure low. Another CT scan showed there hadn’t been additional bleeding from the night before. The free blood was kind of migrating around though, like a bruise that changes shape as it ages.

Thursday, still in ICU, Dennis was more lethargic. He would open his eyes if asked but he looked sick. They were having a hard time with his blood pressure and giving him higher doses of IV med, as well as fluids and electrolytes. Friday when I visited, I had a hard time getting Dennis to wake up. He didn’t interact with us. It was like he was sedated. It was explained to me that this was a common progression as inflammation was often peaking on the second and third days.

That night back at home, I got a call from the hospital. Dennis had been having a hard time breathing. And then, as they were suctioning to clear his airway, he actually stopped breathing. They intubated him and put him on a ventilator. I drove that night to my friend’s house again, wanting to be close in case anything more happened. As soon as visiting hours started the next morning I went to get the story. This was day #4 in the ICU. He looked very peaceful now that breathing was not so much work.

I couldn’t begin to imagine what was going on inside his head. He was somewhat more alert, opening his eyes a lot more on days #4 and 5. He could still follow orders to move fingers and toes. The biggest difference now was that he could not talk, being intubated. I could tell there were things he wanted to say but it was getting very frustrating.

As it got closer to our family reunion, August 4 – 8, people were arriving at home. I spent part of several days at home, but was at the hospital for hours every day. There was not much I could do except let the staff know, from experience, what Dennis was like and what I thought he wanted. There were conversations about resuscitation, feeding tubes, and DNR status that were kind of scary, but fortunately I knew Dennis wanted to have every chance to live.

On day #7 my brother Gary and Lyn went with me. It was upsetting to them, and frustrating to Dennis. He was very tired and we didn’t stay very long. Tubes and wires everywhere. Alarms going off. Phones ringing. Confusion of loud voices from the other half of his semi-private room. We were starting to understand the term “ICU delirium”.

All of these (and more) connected to poor Dennis.

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.

June Journal 2022

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It’s Sunday morning and I thought we were going to go to church. After getting up very early, Dennis went back to bed and is sleeping again. I went in to wake him so I could help him get cleaned up, but he is sleeping so soundly that I have let him be.

He sleeps a lot lately. When he is done sleeping in bed, he sleeps in his chair. He sleeps fairly often when I am reading to him. He always listens with his eyes closed and looks like he’s sleeping, but when he breathes heavily or snores, then I know he actually is. I wonder if this is a good thing, or not?

I know it’s very hard not to sleep when inactivity is the norm. He is so physically limited these days that he is weak and unstable when he isn’t sitting or lying down. I asked him last night what factors were foremost in his slowness and sedentariness, and he couldn’t really say and gave up trying. “I don’t know how to explain it. Oh well,…” and the conversation was finished.

He passes on opportunities to go out more often. It complicates any trip to wonder if he will find a convenient restroom when it’s needed, and when he has a hard time managing by himself. Everything is harder when he has to hold on to a walker, when he has trouble pulling up his pants, when he can’t get the walker out the door.

Able bodied people don’t know how good they have it. No they don’t.

I recently read an article attempting to “stage” or give the phases of Lewy Body dementia according to symptoms exhibited. It did not help me at all. He had symptoms in all phases except the last one before death. The only thing I appreciated about it was seeing the list of symptoms he doesn’t have. I have no doubt that we are being spared the worst of it. Almost 4 years into our journey and he still understands who he is, who his family is and how to be reasonably himself.

Although things could surprise us and bring one or the other of us to a final end, in a moment, it is looking like a long road to me. I need a plan for getting help and that is what I’m working on now.

He has three places in the house where he can be found – in bed, at the table and in his lift recliner. It is June but his stocking hat is what keeps him comfortable at night.

The Last Road Trip?

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We have let enough time pass since the last trip for the memories to fade and not be quite so awful. I knew the time would come when we would have to try another trip, and that time has come. We have unfinished business in North Carolina, in our daughter’s basement, which is partly our reason for going. The other part is that we need to see them more often and want to do our part by going to them. We may not always be able to do that.

Preparation for travel is my first job. I have mapped my route and made hotel reservations for two nights on the road. Both nights find us in towns where I have relatives, and in another life I might have asked to stay with them, but not now. I am so glad that we can afford to choose lodging that suits Dennis’s needs and gives us a chance to get a good night’s sleep.

Our second night is in Madison, Indiana where my cousin and her husband have been developers, overseeing the remodeling of an old, abandoned cotton mill into a Fairfield Inn. It was a big project, and has added a valuable historic site to the city’s list of places to visit. We are actually going to be staying there, as well as having dinner with Ron and Marlene. This will be our biggest “treat” of the three days of travel.

Sat in this chair for a long time…
looking at this view…
while this worn out guy slept.

Nearly one month later:

Our trip proceeded pretty much as planned. The unexpected difficulties were Dennis’s persistent, recurring nosebleeds and a bout of stomach upset that kept him from taking his meds for a few days. He decided he was doing well without the meds and wouldn’t start taking them again – just his supplements. I didn’t argue with him because I couldn’t tell if he was worse in any way either.

We accomplished our mission in North Carolina. Painfully, I went through every box and evaluated every stored thing from our past Florida life. I sold one piece of furniture before Julie convinced me that she wanted the rest for a garage sale she intends to have. I spent quite a few hours sorting and pulling out a few small things that would come back to Wisconsin in the car with us. We had a very full load. Dennis tried hard not to be too needy. He sat in the bedroom watching tv and his phone most of the two weeks.

We did spend some good times with Kevin, Julia and the three children. I think Dennis enjoyed that. They gave up their master bedroom and bath for us, and it was quite adequate, although any change takes getting used to when you have disabilities.

We traveled back in two days. We always seem to be motivated to spend longer hours in the car on the way home. Our last day, driving up through Wisconsin, was rainy and then snowing. Welcome home. I’ve said it before, but maybe this really will be the last time we travel together.

Early on in the road trip, Dennis was still doing well getting around with the walker. He is feeling considerably weaker now.

I. Need. Another. Cookie.

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Yesterday’s thought provoking incident happened around supper time for us. The family had scheduled a Zoom conference to do some advance planning for our summer reunion. I came over to the husband who was sitting in his lift chair with the tv on, his eyes were closed. I told him I was going over to Mom’s house to help her get on the Zoom. She is always confused about computer events.

He opened his eyes and listened to me but had such a blank expression that I started over and reminded him of the details, the Zoom, of the reunion we were planning, and watched him get totally confused by it all. He said so, repeatedly.

“I’m confused. I don’t know, I’m just confused.”

He couldn’t find more words to describe his mental state, and that alone was causing him concern. I could see that he was getting frightened.

“Can we pray about it?” He finally asked, shaking his head. So we did.

He then decided that the best thing would be to go back to his bed, even though he had only been up about half an hour from his last nap. I watched him closely as he went to the bathroom, took off his glasses and hearing aids and laid down. He was a bit confused even in that routine. But he slept for a couple hours, got up and ate supper, and apparently felt more himself.

What was going on there? I don’t know. But I realized that I was past the point of rushing him to the ER for stroke intervention, or any other kind of help. He didn’t ask to go either. Weird changes have become so normal. Some of them I’ve just read about and others have actually happened to us. Once he told me he couldn’t see the food on his plate and wondered what was happening to his eyes. Other times he has decided not to go out to church, which he normally loves to do, because he is feeling “foggy” or hasn’t had a good night.

I wish I could have the conversation with him about what he does want to have done at times like this. The trouble is, he still hopes for a touch from God to take away this disease. He wants to live…. Who wouldn’t, if they were well. I wonder if he would understand that I think the hospital would only prolong his life with LBD. I wonder if he would agree that his present state is not the picture of quality life. I wonder if he would feel like he has lost his advocate.

If God plans to heal him of this dementia, couldn’t he also heal him of a stroke, or an infection, or any other life threatening ailment? He could, and I am content to let him (God) decide when those things come up, without outside interference. But what kind of caregiver, what kind of wife, does that make me? I’m just not sure. I think God and I are at peace with him giving me directions for these scary moments. I will need a nudge one way or another. I will need help in not feeling judged for my decisions.

Yesterday I sat down with a cup of tea and a cookie. I thought and thought about these things and all I could come up with, as I finished the last crumbs, was that I needed another cookie.

To Explain, or not to Explain?

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There is a tension in our life together, the husband and I. He is less aware of it than I am, but even he feels it at times. The tension arises for me when I see him talking to people, as he often does when he’s out and about. Knowing that it is good for him to express himself and socialize, I usually just watch. But I also know that eventually I will have to decide whether or not to step in and rescue.

Rescue who? Usually it’s the kind person who has decided to engage him in conversation.

Before Dennis had the diagnosis of Lewy Body Dementia, I didn’t feel responsible to rescue anyone, well, hardly ever. Before Lewy, he would often get in his “teacher” mode and give long lectures complete with multiple rabbit trails. Since I had heard it all before I would let him and his audience fend for themselves. His topics were still reasonably interesting to a lot of people, hearing them for the first time. Others knew not to get him started.

But now, I have his reputation and his dignity to defend. His topics are much more narrow and not always interesting to others. He’s not good at reading body language and knowing that he’s losing his listener’s attention. Sometimes his discretion is not in play and he says things he shouldn’t. We talk when we’re alone about these times and he is thoughtful and serious about doing better.

Other times he listens as well as he can to conversations but doesn’t hear or understand important parts of them. I’m often surprised to find out what he thinks he has heard.

He is still doing very well cognitively and cares about his interactions with people. He often wants to go over and talk with Mom. He loves to go to church activities. He listens to his favorite people on YouTube and other social media so regularly that they seem like family. His personality is still intact and recognizable. He is still himself, and what a good thing that is! I’m more than thankful.

The fact remains. I spend quite a bit of time explaining Dennis and his intentions to others, and a lot of time explaining others to him. I feel like the gateway to his awareness of the world, and somehow that bothers me.

Memory Exercises

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In our married years, the husband and I and the girls have spent considerably more time with my family than with his. I was always the one who took the kids on vacation and it was easier to go to a place I was familiar with. I always knew that I would be able to fit in, help out and not have to be entertained by my folks. By our sixth year of marriage, both of Dennis’s parents had died, so that made it harder to visit Pennsylvania too. His brother and sister both had young, active families. They were busy.

Grandma Vida Dietz, our Julia, sister-in-law Deanna. This visit to our home in Wisconsin was the last time we saw Dennis’s mom.

For some reason, a few days ago I began thinking about how I would go about helping my girls know this half of their heritage. I wasn’t clear on some of the stories (of which there are many) told at their family gatherings and I couldn’t even remember the names of all the husband’s aunts and uncles. Clearly, I needed to do something about this void of information, especially since I have the husband available to me, and he loves to remember. The girls also love that side of the family even though they don’t know them quite as well.

So this week, after our Bible reading time, I have been asking Dennis questions about the family for an hour or two. It doesn’t take much to get him going. Since he talks kind of slow I can keep up with him, typing out what he says. It was often said of him that he had a photographic memory and amazing recall of things said as well as things seen. It has perhaps grown a little “fuzzy” with his dementia problems, but if he hits a wall on something, he calls his brother Ron and they talk it out.

Daughter Julie sitting on Dad’s lap at her very first Penn Dutch quilting bee.

It’s been interesting, and what a worthy project. I have learned so much about interviewing. Many things I would not have thought about asking Dennis for my own sake, I do think of asking for my girls – things kids want to know about their parents. These are stories and facts that they should know in order to value the general concept of family as well as their own particular family.

And as an added bonus, this might be just what I need right now to help me appreciate what an interesting person I have been married to these last 49 years.

The grandparents they never got to know,