Moving On and Out of ICU

“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.


July Journal: 2022

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.

A Bad Day and a Disturbing Change

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.

Why This Blog


I can’t remember if I wrote this. I decided to start a second blog so I could write freely about my perspective on life with LBD. I did the work of getting it set up, transferred a bunch of previous posts over to it and am now waiting, for something…, I don’t know what.

Initially I called it The Demented Disciple’s Wife, because he was okay with calling himself that. Tonight I changed it to Hope in the Face of Dementia. I think that sounds more hopeful to have Hope in the title. There’s always hope, right? Not everyone would like the other title – I know I didn’t when I heard the husband wanted to call himself the demented disciple.  It will also be less likely that he will google it, start reading and recognize it’s about him.

But I will tell him at some point. I don’t intend to say anything he couldn’t hear, or anything terribly disrespectful, but I think it’s best not to put an emotional burden on him by sharing all my angst. I want this blog to be helpful to others, supportive to caretakers and informative to any who want to know about LBD. This may be the only way for him to share any of his thoughts or research with the world, because I just don’t see him doing that himself. He is all talk and no action at this point. 

Today we got our first shipment of Dr. Carolyn Dean’s magnesium and mineral complex supplements. The husband has been very excited about starting on it, this better form of Magnesium that is absorbed immediately before leaving the stomach. It should not cause bowel irritation or diarrhea so more of it can be taken. He is still sure he’s very deficient and needs the maximum amount. He is sure that he’s successfully untangling the amyloid protein bodies in his brain and restoring himself to normal.

He has been off his prescription meds for a little more than a week now.  He has some high numbers on his blood pressure but he is convinced it’s reaction to being upset at the time he measures. He takes it again later and it will be a little lower usually. He thinks his skin condition has improved, his other symptoms associated with his facial nerve have improved (eyesight and smell) and he feels he is moving more steadily. When we walk he comments on how he can look around now, not at his feet constantly. And of course, he is not constipated. He has to tell that, even to strangers he has just met. It’s weird. He doesn’t just tell them he’s not constipated, no, it has to be the before and after story, with all kinds of details. It’s weird.

Even though he sees improvement in his condition, there are still the fluctuations to deal with. Things can change on an hourly basis so it is hard to say the improvements are lasting. One thing I can say is that he doesn’t seem to be getting worse. That is a hopeful thing for which I am thankful.