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.

I. Need. Another. Cookie.

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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.

To Explain, or not to Explain?

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There is a tension in our life together, the husband and I. He is less aware of it than I am, but even he feels it at times. The tension arises for me when I see him talking to people, as he often does when he’s out and about. Knowing that it is good for him to express himself and socialize, I usually just watch. But I also know that eventually I will have to decide whether or not to step in and rescue.

Rescue who? Usually it’s the kind person who has decided to engage him in conversation.

Before Dennis had the diagnosis of Lewy Body Dementia, I didn’t feel responsible to rescue anyone, well, hardly ever. Before Lewy, he would often get in his “teacher” mode and give long lectures complete with multiple rabbit trails. Since I had heard it all before I would let him and his audience fend for themselves. His topics were still reasonably interesting to a lot of people, hearing them for the first time. Others knew not to get him started.

But now, I have his reputation and his dignity to defend. His topics are much more narrow and not always interesting to others. He’s not good at reading body language and knowing that he’s losing his listener’s attention. Sometimes his discretion is not in play and he says things he shouldn’t. We talk when we’re alone about these times and he is thoughtful and serious about doing better.

Other times he listens as well as he can to conversations but doesn’t hear or understand important parts of them. I’m often surprised to find out what he thinks he has heard.

He is still doing very well cognitively and cares about his interactions with people. He often wants to go over and talk with Mom. He loves to go to church activities. He listens to his favorite people on YouTube and other social media so regularly that they seem like family. His personality is still intact and recognizable. He is still himself, and what a good thing that is! I’m more than thankful.

The fact remains. I spend quite a bit of time explaining Dennis and his intentions to others, and a lot of time explaining others to him. I feel like the gateway to his awareness of the world, and somehow that bothers me.

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.

Being “Right” Comes Full Circle

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(It has been suggested by the husband that I write this to his daughters. He has Lewy Body Dementia, and once in a while, it adds to life instead of just taking away.)

We were reading a thoughtful paragraph on humility this morning, referencing people who are always right about anything and everything. Dennis laughed and said something that our youngest daughter had said to him once. “I am right, because I am a Dietz!” It was said tongue in cheek and they laughed at it at the time too. Then he got quiet and continued, “I love our daughters so much. I hope they know that.”

It was a special moment and we continued talking about the meaning of that conversation and why the memory of it sparked such gratitude and love inside his “dad heart”.

During the years our daughters were growing up at home there were so many good times for us as parents and for them as children. There were also times, not so good, when they felt distanced from their parents. The role of provider was always of high concern for Dennis, and required a lot of his attention. Maybe small people (children), having limited experiences, were not as interesting as other friends and business associates. He never intentionally conveyed this to them, but it was conveyed nonetheless.

In addition it was natural to assume that children’s opinions, reasons, and thought processes were still to be directed and molded, not listened to and considered. This attitude also was never intentionally spoken, nor was it applied 100% of the time, but over the years it was felt, sometimes acutely. Although Dad provided well and loved them, he didn’t know them personally and was often clueless as to what they were feeling. Perhaps they heard more of “don’t leave toothpaste in the sink” and “your lights were left on – go turn them off” than the things daughters need to hear from their dads.

So what does it mean when a daughter can tease, laugh and point out some hurtful flaw when talking to her dad? What did it mean that she could remind him of that “always right” attitude in a gentle conversation (well, I don’t actually know how gentle it was or what it was about because I wasn’t there…)? To him, it meant forgiveness. It meant that she wasn’t afraid to remind him of that proclivity of his. It was acknowledgement and grace extended. And it was love.

The husband has mellowed so much in the last few years. Retirement has put the distraction of being a provider behind him. He fully realizes those things he has missed by not being more aware, more curious, more persistent about knowing his children. He has also been diagnosed with a heartbreaking condition. But it has turned into a blessing. It’s almost as if his heart had to be broken in order for him to know what was in it. It’s amazing to think about.

Although he is disabled, he has traveled long distances to see each of his two daughters get married, during pandemic times. He would not have missed these opportunities for the world. “Being right” has come full circle and is now much more like “Being in love.”

It provides hope for us all. We can grow, learn, change. The whole story doesn’t have to be pretty for the outcome to be good. God be praised for his transforming power, his gentleness and his wisdom, and his mysterious ways.

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.

The New Chair

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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?

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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…