Conversations with the husband are rare these days. He often talks at length, unaware that his speech is unintelligible. Most of the time his control of speech muscles is minimal, but there are those exceptional times of clarity. It is then that I get a glimpse of what his mental status is.

Today I went over to him because he seemed to be restless, and I thought a little re-orientation would be helpful to calm him. We talked about his memory and who he remembered. I asked him if he knew who I was. He did.

“You’re my wife.”

“Well, I have two rings on my finger. One of them is yours.”

“How many rings have you got on?”

“I have two rings on my finger. You see this?” (holding up my hand)

“Yeah, I see that as four fingers.”

“Yep, and see the rings on that finger?”


“One of them is my wedding ring and the other one is yours. One of them is the diamond that you got for me, and the other is your wedding ring that they took off you at the hospital. They were afraid your hands would swell up and it would be too tight.”

“And what ring of mine are you wearing?”

“Your wedding ring.”

“Oh yeah. (pause) Are you married to me now?”

“Yeah, don’t you remember we got married?”


“Well, how did I get to be your wife if we didn’t get married?”

(thinking hard) “Yeah.”

That was only one of the interesting exchanges today. Earlier he told me that another me came in the room from his left and joined into the me standing at the bedside, and I was transformed into someone even more me. I’m wondering if this isn’t the beginning of Capgras syndrome, which I’ve heard so much about with Lewy Body dementia. If only the other me’s were able to help out a little more, maybe I could get some rest. Wishful thinking…

Staring out the window at the snowstorm after our conversation.

Our Fourth Winter Begins

Fight the darkness

It is a stunning realization – we have begun our fourth winter since the husband’s diagnosis of Lewy Body Dementia, LBD. It is hard to say if the things we have done since September 2018 have been the right things, or have been done consistently or for long enough time. It’s just hard to imagine that one could quickly change the course of a disease that’s been in progress for many years. We may not have stopped it in its tracks, but it is clear that our journey is different from most others, so far.

LBD quickly becomes a story told by the caretaker. I remember attending a conference for LBD patients and their spouses/caretakers at Mayo Clinic in 2019 where a patient was one of the main speakers. He did a good job. I wonder how he is now. I have a feeling he was a rare case.

My Dennis used to think and talk about the book he was going to write telling his experience with LBD, and his reversal of the disease, of course. That doesn’t get mentioned anymore. He doesn’t write anything, and sometimes has trouble signing his name. A book is not the kind of project he would have been motivated to finish even when he was well, so it is not surprising to me that it has never even been started. Talking has always been his mode of communication. LBD has not changed that.

He has cognitive deficits that he is aware of, but his personality is intact. His curiosity and desire to learn is still there. His need to teach and share what he knows is still prevalent. He surprised us all over the Thanksgiving holiday by having some fairly deep conversations with several people, in which he almost seemed normal in a “pre-Lewy” way. He listens every morning when we read. He asks intelligent questions and makes reasonable comments. But prolonged thinking tires him out and he no longer tries to convince, debate or argue his points.

I left this morning to take Mom to an early doctor appointment. Dennis was listening to a favorite podcast and started to tell me something he thought was very important, which I didn’t have time to hear. When I asked him at lunch what the important thing was, he couldn’t remember it. He said he was having more trouble with his memory again. It did finally come to him, but he had to ask me to find the podcast for him on his phone and play it over.


I’ve been gone most of the day, taking mom to appointments and for groceries. He sits in his lift chair, silence in the room – a rare occasion. I ask him what’s on his mind, and does he need socialization, from me. He says “no”. He’s thinking about a sermon he heard earlier on TV. I don’t believe him. I sit down and tell him about my day and read to him.

Is It NPH?

June 13, 2018

The husband is so excited that there might be an explanation for his decline of late, and more than excited that there may be something to reverse it. He spent hours tonight watching videos about NPH by people who’ve had it and doctors who have treated it. It started like this…

Yesterday at the doctor’s office they did the routine things, weight, BP, EKG and then Dr. Sanchez came in and started talking with him about how he was feeling, what medicines he was taking, etc… I listened as he gave the doctor a “sort of” picture of his fatigue, discomfort, etc… but there came a spot where I had to tell the doctor that it was worse than what he was hearing. The husband doesn’t take walks, sleeps whenever he’s not moving, has no energy and all that.

After discussing sleep apnea and other possible causes of the complaints, the doctor asked me “Does he shuffle when he walks?” And of course, he does – like a woman nine months pregnant. Well, then he asked a couple of other questions and Dennis told him about his memory problems, and his urinary urgency, etc… and the doc said “You’ve got NPH.” I had never heard of it. It’s very interesting. And this doc knew a lot about it, even though it’s not very common, because his father had experienced it and been treated successfully.

NPH stands for normal pressure hydrocephalus. Hydrocephalus that we usually see is with babies who have the large head because of the excess fluid around and in their brain. But something like that happens with some adults too, usually people over 60. The treatment for this, no matter who has it, is to place a shunt to take the fluid away so it doesn’t cause pressure on the brain. The three outstanding symptoms that almost everyone has are the shuffle walk, the memory loss, and the urinary problems. The test for it is a spinal tap. They remove some fluid and often the shuffle walk is gone. They compare the walking ability before and after and see if it improves. Isn’t that strange?

The doctor also wanted routine lab work, which we are both having done tomorrow, since I also have some ordered for my yearly physical. He will also get an echocardiogram and will have to make an appointment with his primary medical doctor. He has appointments with the dermatologist and the dentist next week so we are going to be busy going to doctors (not to mention I might have to go with Scottie for her procedure too).

We don’t know for sure that it’s NPH, but the husband has such a strong feeling that he does that he will be really disappointed if he doesn’t. If he does, this is pretty important. We’ve been feeling bad and a bit scared at how rapidly things have changed for him and praying for the wisdom and help to change things. We always thought it had more to do with his weight and inability to lose but maybe we’re being shown something we had never thought of or known about. Kind of exciting, except for the fact that there is also quite a risk with brain surgery.

There’s a lot online about NPH so if you want to follow along with us and be knowledgeable, just google it and you’ll find lots of info. I’ve been happy about the way Dennis and I have worked together lately, to manage the move, the changes in health, the prospect of retirement and lower income – we have a three way talk with God every morning about everything we can think about. Just saying that we pray doesn’t adequately describe it. It has been so good for us. We don’t know what the path ahead holds for us but as long as God is marking out the way, we are not afraid to follow.