stroke

A Near Miraculous Turn of Events

/ Shirleyjdietz / 1 Comment

I know enough not to get haughty and demanding with God. On my walk yesterday evening I had asked only for some small encouragement, something to keep us in the game and give us direction, some small arrow to shoot at the complex discouraging problems in view. I felt a plan was in place, even if I didn’t know the details. I trusted we would be helped, based on the character of my God. And now I will acknowledge his actions on our behalf, because that is what is due.

When I arrived at the hospital on Wednesday morning, Dennis was already back from Interventional Radiology and the feeding tube was in place. It had gone perfectly. However the nasogastric tube was still in place also and would have to stay there, hooked to his nose, for another 24 hours before it could be taken out. We decided to allay our disappointment with a little work.

I fed him ice chips and started his exercises, moving every part of him that would move. He was just finishing this when PT came to the room. The day before I had told the attending doctor that he had been alert all day and had scratched his own nose. He had talked to her and remembered her name. She had been impressed and had asked for him to be re-evaluated. The PT girls had him sit up on the side of the bed, and they too were impressed by his responses. Then Occupational Therapy came and had him brush his own teeth with a sponge stick, and a few other small maneuvers. Another point for the man. Speech Therapy came next and had him do a bunch of swallowing exercises. This was a busy morning for someone who had been nearly comatose for several weeks.

First time sitting up in a looooong time. It felt good. Still have a few tubes to get rid of though.

But wow, did it ever pay off! The attending doctor came in the afternoon and said Dennis was going to acute in-patient rehab at Miller Dwan, the best in the area. It’s connected to the hospital via skywalk. He would probably be able to go on Friday. Whereas he had not been a candidate for it previously, they now felt they had something to work with and were going to give him a second chance. I was ecstatic. Dennis was worn out but I think he was catching on that a good thing had happened.

We talked about it (I talked about it) the rest of the afternoon as he practiced swallowing ice chips. So even though he still had the NG tube for another night, it felt like the day had gone gloriously well. He had been a trouper and had worked hard. I had been a good coach and advocate.

I left to stay overnight with a friend who lived a few miles away, feeling oh so grateful and amazed at such a turn of events.

Moving On and Out of ICU

/ Shirleyjdietz / 1 Comment
“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

/ Shirleyjdietz / 1 Comment

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.

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.

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.

A Bad Day and a Disturbing Change

/ Shirleyjdietz / 2 Comments

May 29, 2021

A strange occurrence this week. The husband had a bad day which was noticed first when we went a few doors over to my brother’s house for a meal. He had a very hard time seeing things, like steps to go up or down, and food on his plate. He was very quiet at the meal but still conversed. Being very tired afterwards, he went for a nap.

When he woke up he was confused and couldn’t verbalize well. Words would come out of his mouth that he had no idea he had spoken, words that didn’t mean what he intended to say. He didn’t know why. He looked at me strangely all evening and acknowledged that something was very different and very wrong. He was slower in his movements but was able to get around okay, and seemed weak but symmetrical in his muscle tone.

His blood pressure was very high, something that had become common for him. His usual methods of bringing it down were not as effective, but as the evening wore on it did come down. LBD is known for erratic spikes in blood pressure in spite of medication.

I wondered if he had experienced a small stroke.

The next day he was not as “scary” in his reactions but still very bothered by his inability to think and verbalize. He concludes that some damage has been done and it may take a while for him to recover.

Even before this happened, his willingness to accept a wheelchair signaled a change. He has needed one the last couple of times we were seen by a doctor. He can’t stand in lines to wait at the clinic and has felt generally much weaker. He has stopped doing exercise except on rare occasions. He can’t walk very far and wants to have the walker in the car whenever we go somewhere. His overall appearance is of a very disabled man.

There are ups and downs, relapses and recoveries with LBD, but I would have to say that he has clearly progressed in the disease. He has not been making phone calls since having the speech trouble and that is sad because it was a lifeline for him. I’m hoping that he will improve in that area.