Conversation in the Night

“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.


No Place Like Home?

I can’t bear to show you a picture of Dennis. You get a pretty sunrise instead.

We have not been here before. The husband’s experience with Lewy Body Dementia has been atypical – no hallucinations, personality change, severe memory lapses, or all the other nightmarish things I read about in online support groups. But this stroke and subsequent hospitalizations have taken him down.

It was reasonable to think that he might recover some or all of his pre-stroke abilities, like other stroke victims do. And he did. He got back to breathing unassisted, verbal communication and basic movement and strength in his arms and legs. He was motivated to work hard and was able to express that. He talked to friends on the phone, gave feedback, joked with caregivers, noticed his surroundings.

Even a week ago, he responded to the move to Maple Ridge pretty well. Then came the day I wrote about last, when his lethargy increased and he went nearly comatose. This was the first time a urinary tract infection had affected him like this, something I have read about countless times in the support groups. The day after his two trips to the ER, being started on antibiotics and given a new feeding tube, he was understandably tired, but seemed to rally a bit. He was cooperating with the therapists. We played catch with the beach ball.

Yesterday and today he is once again silent and not communicating. I have to work to stimulate him enough for his eyes to slowly open and stare at me. A wet washcloth, touching his face, turning up the hearing aids, sitting him up in the bed, deliberate and focused speech – all this gets very little response. He is stiff, rigid and difficult to position in bed. There is the perpetual lean to the left that he’s not able to correct as well as he did a week ago.

What happened? Am I seeing the dreaded progression of the dementia? Are we on the Lewy roller coaster? Or is the inconsistency of his care at the facility having something to do with his condition? Will he go in and out of this behavior or is it permanent? So many questions, so few answers.

I’m talking and thinking the language of this answer-less world all day. I recount the day’s happenings to friends, my mom, my daughters, my brother, my pastor, even the nursing home employees who will listen. I’m telling God what it’s like to sit and look at this shell of the man he gave me. I’m constantly going back in my thoughts to this situation we are in.

If he has declined because of the inconsistency of his care, then I need to bring him home. I can be consistent if nothing else. If he has declined because of the progression of his diagnosis, then I need to bring him home, because these may be his last days. Either way, the comfort of being home and of having someone respond to his needs will be the best thing for him. He deserves more than what he is getting now. I think I am ready to bring him home.

Progress Report: Week 4 in Rehab

Last Thursday marked the end of the fourth week in rehab at Miller Dwan, one month of Medicare’s allowed time. My schedule was the same, going up to be with the husband four of the days and at home for the other three. Here’s what happened (in my experience, which is probably much different from the husband’s).

– Shell Lake Health Care Center declined to take Dennis. They felt they didn’t have the needed equipment and the ability to give speech therapy often enough. Back to searching for another facility.

– Gave him a much needed haircut, but there was the part of his head that was hard to move off the headrest of the wheelchair. Tricky and not the best job I’ve ever done.

– He would try to wake up for his therapies but I had a feeling something was “off”. He was looking more like a nursing home patient than a rehab patient. A lot of vacant staring at nothing. Worrisome.

– He kept his ability to sit by himself and correct his leaning. OT and PT did a lot of reaching and grasping exercises. Worked on the steps to roll over in bed.

– My saddest day at the end of this week, I arrived and he told me he was trying to catch up on his sleep and not to talk to him. Granted, he’d had a hard night and he did feel bad about telling me that later.

– Maybe getting over some of his bias against talking to the psychologist assigned to him. Understanding her role better. She’s in a wheelchair too.

Reach Dennis, reach!

June Journal 2022

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.

I. Need. Another. Cookie.

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.

Telephone Tribe

I’ve just read a post in the online support group for dementia caretakers that made me think. It was about how those with a diagnosis of LBD, who have been good friends with many in better years, don’t hear from their friends any more. Actually it was a caretaker writing the post, who was sad that the friends didn’t even contact her to ask how her husband was. She was wondering what their excuses were. Were they unable to handle the changes they saw in him? Were they afraid dementia was contagious, or that they would somehow get it? Did they think that their absence wouldn’t be noticed by anyone so why bother?

My husband who has Lewy Body Dementia is probably not your typical dementia victim, because he has refused to let people forget him. He calls them up if he knows their number. He hunts them down if he doesn’t know their number. He calls them again if they don’t answer the first, second, or third time he calls. He checks up on them even if they don’t check up on him. He remembers what they’ve talked about. These people are his past business associates, the members of the band he used to play in, and family members.

Many times I’ve listened to the conversations (he is always in the living room and doesn’t try to keep them private). Sometimes I cringe when I hear him repeating the same story to someone who has heard it all before. Sometimes I feel sorry for the person he calls because he talks so slowly and often has trouble hearing. Sometimes I wish he wouldn’t try to sound like an authority about other people’s problems, or misquote things he’s read, or be so simplistic about things I think are much more complex. But at the end of it all, I see that there are those people who do take his calls anyway. There are some who listen to his stories, even if somewhat impatiently, and respond with interest. Some tell him that he has encouraged them, given them hope. They are his telephone tribe.

I hear patience in their voices when they talk to him, laugh with him, ask him questions. When they don’t have time for his hour long versions, they tell him they need to go in a few minutes. They set limits in kind ways and show respect. They call him back when they say they will or apologize if they forget. They continue being good friends. They know they are doing something for him that friendship is supposed to do, and they are not afraid, not too busy, not “turned off” by the changes dementia has brought to him. I am so thankful for those friends, because they also help me. I am thankful to have married a man who chose his friends wisely. If you are this kind of friend, thank you.

The New Chair

Dennis has been getting more receptive to equipment that makes movement easier for him. He always used to say no to those things, thinking that he should continue to do everything the hard way, under his own steam, because it was “exercise”. But now his slowness and instability make it hard for me to take him places, even close places like Mom’s house, or to my brother’s which is easy walking distance (for anyone but Dennis).

So the first concession was to start using a walker. We had a low end model but he found it hard to go over uneven sidewalks because the walker had only two wheels and the other contact with the ground was just aluminum legs which often got hung up. I guess that’s why people buy tennis balls and stick them on the legs.

Then he discovered Mom’s fancy convertible wheelchair, which can be used as a walker and also has a seat. It is extra security when he gets tired and needs to rest. He hardly ever goes far enough to need to rest, but that is beside the point. The seat is there and ready.

Yesterday, he broke down and said he needed a lift chair. We had been noticing the increased struggle getting out of recliners. He loves to spend most of his time in that type of chair but it would take him a half dozen attempts to raise out of one. He has very little strength in his thighs. At the same time he had been having frequent urges to get to the bathroom which was not good when he was stuck in his chair. He had tried Mom’s lift chair last week and found it quite impressive. He wanted one.

There two furniture stores in Hayward – the expensive one and the less expensive but still horrifying one. In the lesser store I found two chairs, both of which were just a bit under $2000. They also looked huge and I am not a fan of huge, heavy furniture anymore. I didn’t even bother with the expensive store. Instead I went to Facebook marketplace and inquired about three that were within reasonable driving distance. This morning I borrowed my brother’s truck, picked up a strong helper and drove an hour away to Ashland and fetched home a chair. The upholstery is in great shape, and it only cost a quarter of what a new one would cost. I could be happier about the electronics which are a bit confusing, but it does a nice powered recline and it does eject him satisfactorily. There was no place to plug it in for a test at the storage facility where we picked it up.

I don’t know, it seems really big to me…

I think he’s happy tonight. He likes it (thankfully). It’s a comfortable chair, although I’ve only kind of sat in it once. It’s quite a piece of furniture, with a “presence” all its own. I’m afraid it might even have a personality. It might need a name. At the very least it calls for a living room re-arrange, since it looks really weird in its heightened position, waiting for its occupant. I’m hoping to dream something up while I sleep tonight. I’ll find a good place for it. Welcome Mr. Chair.

Can You Get This Off My Phone?

Today the husband came to me in my “girl cave” wanting to know if I could fix something on his phone. He had inadvertently taken a video of his knee and posted it on Facebook. A fairly complicated accident, if you ask me. There were already two comments on it from friends, which was nice, but he hadn’t seen them yet. Instead he was frustrated over an email ad offering to take down an unwanted photo from an unnamed site.

Is there some internet business just scrolling Facebook, finding weird videos, and marketing themselves as being able to solve some horrible problem? I don’t know. I just edited the Facebook post. I could have deleted it but the friend messages were nice and I thought he should keep them. But the episode made me wonder if he could find trouble with all he does on his phone…

Hey, why not? It’s a nice knee…

It is his dearest occupation – to watch/listen to podcasts and videos on his phone. It’s close, in his hand, and the screen is magnified to a size he can read. It talks to him and gives him things to think about. I don’t know what could replace it in his limited arsenal of things to do.

His inability to see things for what they are, such as advertisements, is constantly coming up in our conversations. He is very swayed by clever marketing and feels like he has “discovered” things by his “research”.

Lately he has been “researching” a problem my Mom has been having and is certain he can help her with it. Last night, when I had disappeared on a bike ride, he went over to Mom’s, uninvited, and was sitting talking with her when I stopped in. When I left to get a shower and go to bed, he didn’t want to come. He sat and talked until nearly 10 pm. I wasn’t sure if I should make him come with me, but I figured Mom could handle it if she wanted him to leave. She said he told a lot of old stories (no surprise there). Her comment was, “he doesn’t get bored when he’s doing the talking”. Not always the case with those who are listening. He didn’t remember to tell her about his research and wanted to try again today.

It’s sad. Sometimes it’s frustrating. But he is still interested in life. He’s kind, cooperative, funny, and really not that much more work than I’m used to anyway. And I have so many places to find joy that it amazes me. God is good, even (especially) in this phase of our lives. We are okay, at least until I can no longer figure out technology either…

And Then Again, Maybe Not…

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

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.