caretaking

The Husband’s New Job

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Dennis has a new job. I hope he’s up for it because it won’t be easy or short term. His job is surviving rehab.

Yesterday I made my way from the parking garage at St. Mary’s Medical Center, across the skywalk to Miller Dwan Rehab Center. Finding my way in a new place is always an adventure. Knowing and following all the rules challenges me, especially since Covid. Hospitals are built with mazes as their model and so many of the halls look the same. And it’s not like they have a lot of restrooms for the public either. I drive 90 miles to get to Duluth so I make it a point to find them.

A rehab hospital is an entirely different experience from an acute care hospital. I was so relieved at the quietness, low key atmosphere, soft voices and lack of hurry. The husband has a small private room with glass sliding doors, and it’s right in front of a nurses’ desk. He has a window and a nice bathroom. Since he still needs a lot of care, all the regular hospital extras are there – oxygen, suction, monitors and computers, lifts and a fancy bed.

The social services worker assigned to Dennis talked with me, both to get information about our home situation for eventual discharge, and to give information about his stay. We already knew he would be getting about three hours of therapy per day from physical therapy (PT), occupational therapy (OT) and speech language therapy (SLT). There will also be talks with psychologists, chaplains, social workers and of course, the doctors. They all meet weekly on Tuesdays and evaluate each patient’s progress. The social worker promised to give me a report each Tuesday after their meeting.

At this point, they estimate Dennis will be with them for 60 days. I am not surprised that it could take a long time because Dennis is at zero on the independence scale right now. I am surprised and relieved that they are willing to take him for that long as it will give me time to prepare for where he goes next. I am hoping our insurance will cover that amount of time. I haven’t checked yet, and I guess that will be my new job.

Good to be wearing T-shirt and pants again.

No time was wasted by the therapists. They have all had two or three sessions with him during these last two days, mostly to evaluate and set up their plan. He is an exhausted guy and it worries me to see him looking and acting so very tired. Before the stroke he was walking, talking, feeding himself and doing many of his daily activities without help, but I also have to admit that he was already tired and taking frequent naps. What kind of improvement can we even hope for now, given all that he’s been through in the last four weeks? But this is humanly thinking and I thank God that we are not limited to that.

I can tell that Dennis has had a lot of time to think, at night especially. He is often uncomfortable, or cold, or sore from his position which he cannot change himself, and unable to find his call button to get help. As his mind clears he is more aware of his predicament and has started looking for someone to blame. He has landed on himself.

“If only I hadn’t been so stubborn about wanting to do it my way. I didn’t want to take those blood pressure meds. This is all my fault. ” I did my best to talk him out of that one, reminding him that even when he took the pills he had alarming hypertensive spikes, followed by hypotensive lows that nearly made him pass out. But, I totally get what he’s feeling because I also went down that road, feeling that I should have made him take his meds. It could easily be my fault too.

When one of the therapists asked how far I was driving and how often I came, he remarked “I don’t know why she stays with me.” I have never heard him say anything like that before and was actually a bit shocked to hear it. I told him I was sticking around until January because I wanted to be able to say I’d been married for 50 years, then I’d be leaving. Did he laugh? I couldn’t tell.

So you see, he is having to deal with some heavy emotions. He hasn’t been one to admit to depression, even since the Lewy Body dementia diagnosis. I am hoping some of the rehab deals with the natural depression that anyone would feel if they suddenly became weak, helpless and out of control in every way. And I will be reminding him to look ahead as God guides him into a purposeful future.

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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.

The Last Road Trip?

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We have let enough time pass since the last trip for the memories to fade and not be quite so awful. I knew the time would come when we would have to try another trip, and that time has come. We have unfinished business in North Carolina, in our daughter’s basement, which is partly our reason for going. The other part is that we need to see them more often and want to do our part by going to them. We may not always be able to do that.

Preparation for travel is my first job. I have mapped my route and made hotel reservations for two nights on the road. Both nights find us in towns where I have relatives, and in another life I might have asked to stay with them, but not now. I am so glad that we can afford to choose lodging that suits Dennis’s needs and gives us a chance to get a good night’s sleep.

Our second night is in Madison, Indiana where my cousin and her husband have been developers, overseeing the remodeling of an old, abandoned cotton mill into a Fairfield Inn. It was a big project, and has added a valuable historic site to the city’s list of places to visit. We are actually going to be staying there, as well as having dinner with Ron and Marlene. This will be our biggest “treat” of the three days of travel.

Sat in this chair for a long time…
looking at this view…
while this worn out guy slept.

Nearly one month later:

Our trip proceeded pretty much as planned. The unexpected difficulties were Dennis’s persistent, recurring nosebleeds and a bout of stomach upset that kept him from taking his meds for a few days. He decided he was doing well without the meds and wouldn’t start taking them again – just his supplements. I didn’t argue with him because I couldn’t tell if he was worse in any way either.

We accomplished our mission in North Carolina. Painfully, I went through every box and evaluated every stored thing from our past Florida life. I sold one piece of furniture before Julie convinced me that she wanted the rest for a garage sale she intends to have. I spent quite a few hours sorting and pulling out a few small things that would come back to Wisconsin in the car with us. We had a very full load. Dennis tried hard not to be too needy. He sat in the bedroom watching tv and his phone most of the two weeks.

We did spend some good times with Kevin, Julia and the three children. I think Dennis enjoyed that. They gave up their master bedroom and bath for us, and it was quite adequate, although any change takes getting used to when you have disabilities.

We traveled back in two days. We always seem to be motivated to spend longer hours in the car on the way home. Our last day, driving up through Wisconsin, was rainy and then snowing. Welcome home. I’ve said it before, but maybe this really will be the last time we travel together.

Early on in the road trip, Dennis was still doing well getting around with the walker. He is feeling considerably weaker now.

Memory Exercises

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In our married years, the husband and I and the girls have spent considerably more time with my family than with his. I was always the one who took the kids on vacation and it was easier to go to a place I was familiar with. I always knew that I would be able to fit in, help out and not have to be entertained by my folks. By our sixth year of marriage, both of Dennis’s parents had died, so that made it harder to visit Pennsylvania too. His brother and sister both had young, active families. They were busy.

Grandma Vida Dietz, our Julia, sister-in-law Deanna. This visit to our home in Wisconsin was the last time we saw Dennis’s mom.

For some reason, a few days ago I began thinking about how I would go about helping my girls know this half of their heritage. I wasn’t clear on some of the stories (of which there are many) told at their family gatherings and I couldn’t even remember the names of all the husband’s aunts and uncles. Clearly, I needed to do something about this void of information, especially since I have the husband available to me, and he loves to remember. The girls also love that side of the family even though they don’t know them quite as well.

So this week, after our Bible reading time, I have been asking Dennis questions about the family for an hour or two. It doesn’t take much to get him going. Since he talks kind of slow I can keep up with him, typing out what he says. It was often said of him that he had a photographic memory and amazing recall of things said as well as things seen. It has perhaps grown a little “fuzzy” with his dementia problems, but if he hits a wall on something, he calls his brother Ron and they talk it out.

Daughter Julie sitting on Dad’s lap at her very first Penn Dutch quilting bee.

It’s been interesting, and what a worthy project. I have learned so much about interviewing. Many things I would not have thought about asking Dennis for my own sake, I do think of asking for my girls – things kids want to know about their parents. These are stories and facts that they should know in order to value the general concept of family as well as their own particular family.

And as an added bonus, this might be just what I need right now to help me appreciate what an interesting person I have been married to these last 49 years.

The grandparents they never got to know,

Our Fourth Winter Begins

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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.

What Hope Can Do

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I haven’t recorded all the things that Dennis has gotten through lately, and since they are remarkable they should be recorded.

We’re in a stage where the doctors seem to be done with him. No one is checking him or recommending new treatments. He has discontinued some of the supplements that didn’t seem to have much effect, but were costing a lot of money. It could be viewed as a discouraging time, but he remains outwardly hopeful and unperturbed.

He was a little unsure about the travel we had planned for the second half of July – it was ambitious. We went from our home in Wisconsin to Seattle, by car for “wedding week”. He wanted very much to be present to see this daughter get married so he did what he could to prepare, and tried not to put any trouble in the mix of all we had to do.

We spent five days driving out, in which we learned to get in and out of hotels, restaurants and restrooms with all our “stuff”. It was very different from being at home and I was unsure what that would do to him, but he adapted. There were a lot of times when the challenge of steps, inclines, small spaces, and long hours made him very tired. We had a wheelchair/walker with us but by the end of wedding week and the four day return trip, he was riding in the wheelchair most of the time. I was very worried that he might fall.

It was a good trip. We were relieved and amazed to be back home after two weeks away. He has recovered and not experienced any lasting changes from all the unusual routines. I thank God every time I think back on this time.

Yesterday morning, praying about the day ahead, God and I came to an agreement. Our new son-in-law’s parents were coming for their first visit to our town and I had arranged with a friend for a boat ride on our favorite lake. I knew it would be kind of weird for Dennis not to be there with us, but I questioned whether we could get him in the boat easily. Even he had said he would just stay home because it sounded hard. We had done this same excursion two years ago with different friends and it had been hard then. He has declined a lot since.

Back to the agreement. I felt that I should ask Dennis again if he wanted to go on the boat, and if he did we would plan on it and God would help us. As I suspected, Dennis wanted to go. Here’s how it went down.

We arrived at “Lunch on the Lake” and talked with Mr. Jacobsen. He allowed us to drive down the steep embankment, on their lawn, to get near their boat dock. Dennis used his walker to finish the distance and get out on the long narrow dock. It took a great deal of coaching and encouragement from all five of us to tell him where to hang on, which part of him to move next, how high to lift his feet, when to duck under the boat awning, etc… , and we were ready to catch him at any moment if we had to, but he made it. It was remarkable because this is a guy who often has trouble just getting in bed.

There he is, in the boat.

We had a good hour long boat ride and a nice lunch with our guests before we had to repeat the whole process in reverse. I think we all had a sense of accomplishment when it was over and we were in the car again. We did a little more sightseeing with him riding in the wheelchair, and by the time company left, he was ready for his overdue nap.

But, can you see what hope can do? Sometimes God gives us challenges and wants to see what we will do with them. With the challenge, he promises to help, to teach, to show up in some way to demonstrate remarkable things. I am so thankful we are not on this journey alone.

This guy. Hopeful.

Telephone Tribe

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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.

Good Advice, God’s Prompting

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I frequently read posts in a caregivers group for Lewy Body Dementia. Tonight I was glad for the advice I commonly see there concerning changes in behavior. The advice is to always suspect urinary tract infection.

The last two or three days have been bad ones for Dennis. He has been weaker, sleeping more, hard to motivate, less interactive, not eating as well, not thinking as well. He needed a shower (smelled bad) and although he didn’t object to the idea, he would never get around to doing it. He would take a nap instead. He began having urinary incontinence problems and wanted to know where his Depends were. He would wake up with an urgent need for the bathroom, but would have so much difficulty getting there that he would have an accident. Finally he told me he had a burning sensation when he started to urinate, and the light in my brain came on. UTI.

Why do these things always happen on the weekend? Fortunately we do have an urgent care clinic at our hospital and I decided to take him there right away. He had to be talked into going – “I’ve had these kinds of problems for months” he said. But I told him we needed to find out and that it would be fairly simple to do, and that it would not be good to wait for an appointment during the week.

We were in an exam room within a few minutes after checking in. Vital signs showed normal blood pressure and temperature, so no fever. A urine sample was taken and an ultrasound of the bladder to see if there was more than usual residual. The results showed a lot of white cells (infection) and some blood in the urine as well. Before we went home he was given an injection of antibiotic, a prescription for 10 days of oral antibiotic and orders to check back in a couple of days.

I am so glad we are on to this! It could explain all the recent changes that have worried me. Hopefully the infection clears up and we won’t have to deal with worse complications like kidney stones or kidney infection.

I thank God for his promptings, for bringing things to mind, and for the appropriate sense of urgency to get care quickly. We ask for his help daily and he is good to us.

Time Goes On

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I have not updated for a while. It has been a relatively quiet time lately and I hope it continues for several more months, if not for the duration. We are getting pretty good at living with things the way they are now.

Today we did very little other than visits to the local clinic. Dennis has been feeling good he says, but then he doesn’t deal with pain so seldom has real complaints. He hasn’t had dizzy spells, or been confused lately. Last week he walked almost every day at the hospital. But this morning, he had trouble feeling normal. His ears felt plugged and sounds in his head (his own voice) were uncomfortably loud. He said his swallowing was problematic. A good day to visit a doctor.

Our first appointment was a tele-conference with the functional medicine doctor. We were there at 10:15, only there were computer problems. Two hours and three nurses later, none of whom could solve the problem, we left. They told us to check back with tell-conferencing when we returned in the afternoon for a visit to our primary doctor.

We did get something done during the time at home between appointments. We both took a nap.

We had a good bit of news when talking with the primary doc. Dennis gets to stop taking the blood thinner – the one that costs $500 for a month’s supply. However, now that he is going off that med, he is clear to have investigation of the stomach mass that was seen on the scan in November. So now he is scheduled to have an upper GI endoscopy on Monday. They use propofol , which isn’t reputed to give problems to LBD patients. They might be able to get a biopsy through this means and it was the easiest first thing to do.

The computer problems were solved when we checked in with the tele-conference room so we were able to spend the 45 minutes with the functional medicine doctor that we missed in the morning. She went over some test results with us and recommended that Dennis go gluten free, and start several new supplements. Overall she was very pleased with test results, especially the lipid profile and A1c. Apparently he’s healthy as a horse (I searched for a better analogy… didn’t work). We walked one circle in the hospital halls afterwards and then went home.

I don’t know what to say about Dennis. He tires easily. He sits most of the time either looking at his phone or the TV. He goes to sleep early and wakes up late, and takes naps. He’s very slow in most movements, but can occasionally go faster if he thinks of it. His right hand tremor is still there and he thinks it’s starting in his left as well. But, he has been remarkable calm, self-controlled, and capable of taking care of himself for hours at a time. He still has a simplistic view of human physiology and is always researching new ways to clear the amyloid proteins out of his brain. The latest attempt is to take black cohosh which he thinks is a natural source of secretase, a proteolytic enzyme. I’ve tried to convince him otherwise – no luck.

He loves to think about spiritual things and enjoys our time reading Bible and having devotions. He’s very concerned about others, especially our sister-in-law who has cancer, and prays for them. He talks mostly about the things he’s seen on TV even when others don’t seem to be interested, so still not very aware. One other thing I notice is that his voice is always soft and breathy, like his throat is swollen. It makes me hurt to listen to him and I often have to ask him to repeat. His speech is flat and without vocal variety.

He wants, with all his heart, to believe that he is reversing his condition by the things he is doing and that Dr. Bredesen’s treatment of Alzheimer’s is working for him as well. I imagine it was disappointing for him to hear Dr. Sudak say that he was a little “ahead of the science” – that is, if he really heard it.

December: Monthly Update

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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.