Going Cautiously into Summer

I say cautiously because last summer is all too vivid in my memory. The plague of anxiety, the delusions, constant watchfulness and attempts to reassure, living in weird circumstances trying to avoid electricity and evil spirits. Oh my.

And then it went away, rather suddenly. It was as if he just decided he was wrong and didn’t feel any of the harmful sensations he had been feeling.

We have had a fall, winter, and spring of stable cognition and emotion. I am thankful. I cannot know for sure why it’s been easier. I guess I don’t need to know. We are continuing to do what we have been doing, in case some of that is helping. From time to time Dennis thinks of adding or subtracting a supplement, and if I don’t think it makes a lot of difference I don’t argue about it, although I do get tired of the chore of filling the daily pill bottles.

Dennis elects to stay home more and more. He doesn’t always go to visit the relatives when I go, or out to eat either. With COVID 19 restrictions he has gotten used to more inactivity – no church, no trips to library or grocery store. TV is his entertainment and he watches it so much he has adopted TV people into his family. I often find him with the TV on while he’s also listening to something on his phone. But he is interested in what he watches and refers to a lot of it as his “research” on various topics.

He’s done a lot of checking up on old friends from our days of teaching at Ambassador College. He calls and follows the trail from one person to the next, finding out how they are. He sometimes picks up his horn and plays something. He tries to take one or two short walks every day, or rides the stationary bike. He knows exercise is important but he often is more comfortable sitting still.

His biggest problems are the constant tremor in both hands now, overall weakness and instability, regulation of his bowel and bladder, some hypertensive spells, diminished sight and hearing, and the inability for planning or complex thinking. He does some of his own hygiene care, but I do have to shave him and remind him to shower and change clothes. He can get snacks from the fridg, but his meals are up to me most of the time. He’s okay by himself at home and I can leave him alone while I go to the garden or to Mom’s for several hours at a time. All in all, life is quite manageable.

Things I notice:

It takes him a long time to come to his chair at the table, pull it out, position himself in front of it, and put his body down. Long time = almost forever.

His skin problems are still severe. He is always scratching skin flakes from his beard, neck, head. His eyeglasses are always so dirty I don’t know how he sees through them. His shirts are always covered with skin flakes and unsightly.

The shuffling is his normal walk now. He’s started a forward lean that sometimes propels him forward faster than he wants to go. He looks old and frail when he walks, his hands shaking but not moving normally with his leg action.

His voice is hard to hear. He talks slowly, so slowly, and his words don’t have edges that make them easy to distinguish. I’m always saying “what?”.

He takes a morning nap and an afternoon nap most days.

So from day to day, not much has changed for the last few months – which is why it’s hard to think what to write. We are mostly praying that he will be able to go to Seattle for a wedding in August (youngest daughter) and another wedding in North Carolina sometime after that (oldest daughter). Travel is not something he looks forward to anymore so the planning will be challenging.


December: Monthly Update

Thanksgiving has come and gone. December is almost over as well. This is our second winter since the diagnosis and I was thinking over the past year and comparing our present with the past.

Dennis is thinner, less physically active and a bit more dependent, but not drastically changed. I think I notice Parkinsonian symptoms increasing faster than anything else. His hand trembles almost all the time when he isn’t holding something or doing some motion. His face is rather mask-like and his voice is soft, monotone and often hard to distinguish. He always shuffles now, especially outside when he’s trying not to slip on snow or ice, but also in the house. And he is sooo sloooow.

Since the hospitalization last month he has not had any trouble with thrombosis – but, of course, he is on an anticoagulant. The doctor says he may have to stay on it indefinitely. He has had continuing trouble with his blood pressure being high and we are still working on getting that stabilized.

He has been much more content to stay at home by himself. He watches a lot of TV, talks on the phone to anyone who answers his calls, and does a lot of thinking (and a few naps). Yesterday I was even able to leave him at home while I took Mom to the doctor for outpatient surgery. He found his own breakfast and lunch without having to call me, which is an accomplishment for him.

One thing we have added is a membership in the senior fitness program at the hospital. He uses the stationery bike when we are there, usually for 39 minutes and then he is done. I have to instigate our trips there and I intended to be faithful at that but no, haven’t done so well.

December is his birthday month. In fact, his day is the day after Christmas, which means he’s always felt a little anticlimactic. It’s a good thing he doesn’t have expectations of grandeur. We usually have to remind him that it’s his birthday. This year both daughters are coming to celebrate with us. They have been faithful visitors since the diagnosis of Lewy Body Dementia. He will not have a hard time enjoying them since he is still quite good cognitively. I got him a couple of things too, but I cannot say what they are because I want them to be a surprise.

The thing that disturbs me most lately is that I feel emotionally distanced from him. I don’t know if it’s my problem or his, or a combination. Some days I spend time reading to him and that seems good, or I take him to exercise and to lunch, also good. But a lot of days I would rather spend my time elsewhere. His interests and topics of conversation are very limited and not very interesting to me. I feel like he talks at me, not with me. Once he starts it’s hard to get him to stop and I often just walk away without him seeming to notice at all. He just keeps talking. I seldom want to watch TV with him. I’m thankful I have a room to retreat to, where I can read or talk on the phone or watch a movie. I know I’m neglecting his social wellbeing, but I am not sorry enough to do something about it.

I have asked him to think about what he wants to do for our anniversary in mid-January. He isn’t saying much.

A Problem Walk


After several weeks of stability and no new problems developing, I was surprised by what happened today.

Dennis decided he should go for a walk. It’s been cold and rainy, making it easy to stay inside without really planning to avoid exercise. He realized his walks had been infrequent. He also has had trouble sleeping and staying asleep and thought the exercise might improve that problem.

I noticed right from the beginning that he was walking slowly. He had to be reminded every few steps to pick up his feet and walk instead of shuffle. We got to our turnaround point and he began to lean to his right and couldn’t straighten up. The steps got shorter and he said he had to stop for a minute.

I thought his posture might be making it more difficult to walk because at this point, he was leaning back and to the side, with his belly thrust forward and his knees always bent. It was very strange and he couldn’t correct it, but he insisted on “walking it out”. A few steps later he was locking up and hardly able to move so I ran back to the house for the walker with the sit down option. He tried to walk with it but soon gave up and sat down. He pushed himself backward, seated in the walker, all the way to the house. He even had trouble with that. It was very odd.

He was also puzzled, but decided that he had gone too far and had simply gotten tired. He was glad to be back in the house, resting in a chair that he could easily get up from.

This whole episode was very Parkinsonian in nature. I have thought that perhaps he was getting better, reversing some of his symptoms affecting mood and cognition. That may still be the case but this is a setback toward a movement disorder. It’s unsettling to me. I have been counting on him being able to move himself. If he loses that ability I don’t know if I can care for him without more help. Not good.

Exactly What?

What exactly am I to do?

He came shuffling from the bedroom where he had gone to sleep and found me, still working on the computer. I dread the sound of him coming because I know he is going to tell me some new reason why he has to get out of this house.

“Do you see this?” He hold up his hand with the fingers curled nearly shut. “My hand was frozen like this. Locked. I couldn’t move it.”

His face has “that look”. Haunted, bleary eyed, almost motionless even when he’s talking and trying to be dramatic.

I don’t know what to say. “It’s a movement disorder, Parkinsonian problem. How do you want to remedy the situation?”

“There is no remedy. I have to get out of this place.” He teeters and catches himself as he turns and shuffles out again.

I think for a while and follow him into the dark room. We talk. I’m desperate. He’s desperate. In frustration I tell him to get his clothes on and get in the truck. I’ll take him somewhere remote and we’ll both sleep there tonight. He refuses my offer. The truck is not grounded, so it wouldn’t do any good.

He’s so good at throwing something crazy back at me, almost like a test, but he doesn’t think it’s crazy at all. “We need to call Mayo Clinic and see what they do for this. They’re here in the Midwest where there are lots of dairy farms with grounding problems. They probably have people with this and know what to do.”

This sounds ridiculous to me, and I know what Mayo Clinic will think when they see his diagnosis, but it is something I can do. I can ask. Will that satisfy him? I tell him they aren’t going to get back to him tonight.

He knows that. “They’ll probably just tell me to get away from the house.”

Yeah, probably.

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.