Author: Shirleyjdietz

We Go to a Summit

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3-5-2019

We have spent a couple of days driving to and attending a conference, a summit on Lewy Body Dementia put on by Mayo Clinic. They put on a very efficient and informative event and I’m glad we were able to go. Dennis met and talked with quite a few people who are struggling with LBD, like he is, and I know it helped him to not feel alone. He viewed himself as being able to encourage others and give them hope. I also met caretakers going through what I’m going through and much worse. It was also interesting to learn more about a complex and difficult condition. The ONLY time nutrition was referenced was when they announced breakfast, lunch and snacks (which, by the way, were very well done and worth the $30 per person registration). I’m pretty sure Dennis was the only person who said the word magnesium, and thankfully he didn’t say it very often.

The virus I’ve been fighting is gradually playing itself out. I kind of wonder why it does that instead of living on in the most virulent stage. Is it that my immune system is developing weapons against it, or that it has a life cycle that determines its course? I am still coughing and uncomfortable but I had no headache yesterday and was able to sit through the day without leaving the conference or making those around me feel infected.

Travel is interesting in that I see how much care Dennis needs in unfamiliar environments. There is nothing about our travel that he plans or gives thought to.  He tries at the last minute to be the “man in charge” by asking how much gas is in the vehicle, or if I have all the cords and device chargers packed. I appreciate our handicapped tag at restaurants and stores, but sometimes it is even easier (or required) that I drop him off at the door of a place and then go park somewhere away, and walk back carrying whatever stuff we have with us. It is often easier to provide him with food or drink than witness his confusion about how to get it himself.  For my own sake, I take more time to look him over, making sure his clothes don’t have spots on them and he doesn’t have food on his face. He doesn’t know how he looks in his stocking cap and puts it on in all sorts of weird ways.  It is partly for my own benefit that I try to get him to be clean shaven and appropriately dressed, but also to keep others from getting negative first impressions.  It’s not all about LBD I don’t think. He’s been unaware in varying degrees for years and years. Or maybe it has been LBD and he’s just had it longer than we know.

He takes all this “herding around” in good humor and jokes about it. He doesn’t fight my planning and decisions (because I don’t tell him ahead of time?) and as long as I let him think about where he wants to eat, he’s good with things and enjoys himself. His biggest challenge is finding restrooms when he needs them. We are constantly dealing with changing conditions, whether it be constipation, diarrhea, or urinary frequency so I keep my brain working on the location of any restroom we pass by.

One concept that was presented at the conference that I find especially intriguing was on the subject of hallucinations. The question was presented to a speaker about how to waken someone from a hallucination, which moved him to talk about what a hallucination was. He felt there was a possible connection between them and the REM sleep disorder that most LBD patients have.  Something about the LBD brain blocks the normal paralysis that people experience when they sleep. Normal people are kept, for the most part, from acting out their dreams. LBD people have physical response to their dream world. What if they also are missing the block that keeps the dream world out of their real physical world? These hallucinations that are realer than real to them, could be their dream life entering into their consciousness. We all know how real some dreams seem to us, and that is why their visions are so troubling to them. The husband does not have that problem, yet, thankfully.

This morning back at home, I am writing with frequent interruptions. As I tried to watch the sky and have my morning coffee at 6:30, the husband also got up and came out wanting to talk about ordinary things. “What is the temperature?” “The sun is in my eyes – can you lower the shade?” “I only had to get up once last night.” “I’ve learned to control my drooling by lightly pressing on C-3.” “Do we have earbuds so I can talk to my brother without using speaker phone?”

Mom has explained to me that she isn’t trying to be mean in going to her room and shutting the door all the time. She just can’t take the constant engagement on the subjects of the husband’s choice. It even bothers her to hear his telephone calls for hours.  But she says she is ok living in her bedroom, and I notice she now has a “dining table” with salt, pepper and her own small coffee maker in there.  I miss her and the times we would spend talking in the morning. It’s often the choice now between meeting my own needs for fellowship – leaving the husband rather obviously segregated, or staying out with him in view of his need for some kind of socialization. Why is he getting up so early?  Was it depression that kept him sleeping until 10 every morning? And now he’s all excited and hopeful? We can’t figure it out.

We’ll figure out one day at a time. Things are always changing.

A Wakeful Night

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2-20-2019

Yesterday, the day of the husband’s doctor appointment, I wanted to encourage him not to be weird, not to ask the doctor to read his reams of research printouts, not to tell stories about Jimmy and Rosalyn (the Carters), not to talk about his wonderful brother who takes him seriously, and the list goes on … But when I sat down hoping to have this conversation with him he was all about his difficult night in which he lay awake from 10 pm to 3 am, hearing from God – that it was his time to write a book and share the secrets that have been revealed to him, mostly about magnesium. The title is already decided: “Wake Up and Smell the Peanut Butter”.

We did have a good talk, and we prayed about the appointment and everything else that we pray about.  I really wish he would write about his experience. That is not a crazy idea and would be interesting, but he has challenges that make it difficult. I ended up suggesting that he dictate his writing and I offered to edit it for him. He had wanted to ask that but was dramatically grateful that I offered before he had to ask. He also asked that I co -write his book, telling the story from my point of view, like Jimmy and Rosalyn did. I think he said that was God’s idea too.  (Another thing I wonder at – he emailed Linda Ronstadt to tell her the problem with her voice going away was because of magnesium deficiency.)

The Elephant

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Part of my problem as a writer is that I often feel like a minor player in someone else’s drama. Even if they don’t write their own story, I feel like I’m stealing if I write about it.

In searching for reasons why he was diagnosed with Lewy Body Dementia just weeks after his retirement, the husband has wondered if he is supposed to share his experience with others. Could it be he is meant to encourage others in some way, even though he is pretty sick about this whole thing? He actually says he might start a blog, or write stuff down as he thinks of it. For several reasons, I think the chances of him writing anything are slim.

For one, he has a history of brilliant ideas that never see action. I don’t see his diagnosis changing that.

Reason two – he doesn’t have experience expressing feelings. He has them, but they don’t usually bother him or beg to be shared. He would like to share things now, but they end up coming out in long, convoluted histories of his life journey accompanied by tears, and a tone of desperation and sadness. He’s doing it a little better now, but the first couple of weeks were tough and any compassionate person who had time to listen patiently ended up crying with him and giving him a hug.

Reason three is simply that writing is work and work isn’t something he’s looking for. Too much mental work makes his head spin.

It’s true that my story has a lot to do with his story but, of course, I tell it from a very different perspective. He reads what I write. I wonder if I will be able to write what I really think or will I change the narrative because of the effect it might have on him?

Interestingly, the two things that have helped the husband and I know each other better in the last few years are our “together” prayers and my blog/journal. I guess in each instance I tend to be more open, truthful and informative. In each instance he feels less threatened by my words because they aren’t spoken to him – they are conversations with God or my readers. He listens better. And the same goes for him when it comes to telling God his thoughts and concerns – one might as well be honest. When he prays, I learn things about him that he doesn’t think to tell me.

It certainly isn’t that I don’t want him to write his own story, from his own perspective. I do. But not writing about this part of my own life has been hard. The vague feeling that I couldn’t write about this big thing happening to us, has made me not write much at all. Somehow, when there is “an elephant” in the room, so to speak, writing about anything else takes second place to wondering about the elephant and what it’s going to do next.

That elephant is on my mind most all the time. I might as well write about it. Probably have to. Just sayin’…

Finances

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Today we go to a financial advisor. It’s not that we have great stores of wealth to manage but we have tried to be smart with what the husband has earned in his many years of service.  We would rather not have to make others support us in our old age. Given how quickly money can disappear these days, it is good to have advice. And is it really money, when all you know of it is numbers on digital screens? It’s a strange world.

With me, it gets stranger still. I am not an astute financier. The thought of me managing any amount of money is not a good thought.  I am in awe of CPA’s and financial advisors, even of bank tellers. But I have to do it now that the husband gets too tired when he thinks about numbers. God helps me. Oh, and I have this. I have advisors.

What people like me need to do, I think, is find and hire others who have the gift. The IRS is my enemy at present, so we have hired our own army of money soldiers. They are mercenaries from some other planet judging by the language they speak. I don’t understand most of what they say. They seem friendly.

As I said, God helps me. I just ask him that none of my mistakes be fatal, and that there will always be a roof over our heads and beans and rice to eat. So far, he has greatly exceeded my requests. I am grateful. And I am amazed at how many interesting things I can learn along the way. There is a website for everything, of course, and a password or two for each portal. There are secret questions and chosen pictures to keep me from wandering into the dark web, whatever that is.  All I have to do is keep my memory intact. Hmm….

Oddly, I am comforted when my bank makes a mistake. When there is no one there who can explain why I’m getting monthly service charges on an account that shouldn’t have them, I am happy to know that there was a human somewhere who, like me, makes mistakes. And there is a human who can make a phone call and tell me that they will remove the charges, just like that. Sometimes it’s still that easy.

So, I am praying today for my “soon to be” financial advisor and putting him in God’s hands. It will be okay. We will be okay. (The stock market goes down, the economy collapses, but we will still be okay, just sayin’.)

Thinking It Over in September

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Now September is more than half over. As often happens when a large, mind-consuming task is done, I’m left wondering what to do next. All the things that I haven’t thought about while concentrating on our trip to Mayo Clinic, are probably still there needing to be attended to, but I’m not sure I’m remembering them all.  That is my most frequent prayer, that I would be reminded to do things at the right time – that nothing would fall through the cracks.  Things that do fall through the cracks unnoticed create bigger problems later.

We are becoming a little more devoted to our keto eating plan now that the husband is motivated to protect his brain cells, keep those mitochondria healthy, and all.  It is a good diet for neuro-degenerative conditions, as well as cancer, diabetes and heart issues. Since I wrote about his condition of Lewy Body Dementia I have received lots of suggestions of things to try and things to avoid. We already know about some of them but will probably try them all eventually – none are ridiculous, or lacking in a good success story. 

Which brings me to the point of how different this disease can be from one person to the next. Each individual kind of paves their own way down this path. There are some common traits, but even those come and go.  While it is interesting and hope producing to read stories of cures and great improvements, it can be equally devastating to read about unsuccessful outcomes. I would rather think that the husband’s story is his own and it’s not been told yet. Let’s just live well and watch what unfolds.

We can do this.

Thank you to all our friends who have responded lovingly, given us encouraging words, and have let us know that you are praying for us. A health threat is a bad reason to be drawing attention, but because of it we are newly aware of people out there who care.  I think that we could relieve your fears for us if you could be around Dennis for a while. I think you would be reassured that he is still himself, and thinking well. Circumstances are troubling, but God pays no attention to circumstances since they do not control him in any way.  It only makes sense to us to trust God and try to think like he does.

Tomorrow we are making a fun trip to the nearest “big city” of Duluth, MN. We are seeing some friends and then going to my favorite department store, Sam’s Club (lame, but true). We are looking forward to it. This weekend is Fall Fest in Hayward. It’s also the start of the Feast of Tabernacles. We intend to enjoy both. Life is good. We are not downcast. But don’t any of you stop praying, okay? Just sayin’…

Post-Mayo Clinic

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Thinking it Over

We’ve had a little over 24 hours now to sit with the weight of the doctor’s words, process them, test how our involuntary reactions are stacking up. He didn’t tell us what we wanted to hear most – that the husband’s problems could be fixed with surgery. It wasn’t NPH, normal pressure hydrocephalus. It was, or is, a form of dementia called Lewy Body Dementia.

I won’t go into the details of the condition. You can find it in Wikipedia or by putting it in the Google search bar or by clicking this . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. Everything has an acronym, so LBD is what it’s called. There is research, there are educational resources, there are support groups, but no cure as of yet.

The doctor spent time explaining thoroughly how he arrived at the diagnosis. He told us exactly how he wanted to treat the symptoms and what things should be done as far as lifestyle changes. We were already doing many of them so life will not change greatly for us. There are a couple new medications, and a few new cautions. Not much is different except now we know.

We are going to be okay. The husband is okay. He likes telling people it hasn’t affected his sense of humor at all and I always agree – it is as bad as it always has been. He is still very much himself, as most of you know.  At Mayo, he did quite well on his cognitive tests, and he will discuss complex things at times and have no trouble at all.  I would say that he is more emotional, more compassionate and understanding of others, more grateful and aware than in the past, simply because life has given him a jolt that enables him to see pain and struggles in the lives of those around him.  I think he feels held and loved by God more because he needs it more.

He is looking for any way that God might be able to use him. You know how men are (well, a lot of them anyway), they want to feel useful and not dependent. He wants to share his story and encourage others. He wants to call himself the Demented Disciple (not my idea).  We’ll see how that works out.  It is however, going to be an experience that we go through together as a family so I know I will have to write about it as a caregiver in order to stay mentally, emotionally and spiritually healthy. I don’t think it’s going to be easy.

I missed a day in my September blogging challenge, but since I’m making my own rules I’m going to ignore that.  The tests yesterday at Mayo were interesting. I may write more about them when I feel more in the mood to inform. The ride home was pleasant and we were glad to get to Hayward around 9 pm. That’s it for tonight.

Mayo Clinic Day 4

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Day 4 at Mayo Clinic had its up and downs, but was also the day with the most accomplishments.

The day started early – third day in a row that we were up, fed, and on the bus shortly after 7. Soon after arriving Dennis was met by the professional doing his testing and disappeared for a couple hours. He came out for a quick snack and then went back for another two hours. I thought for sure he would be exhausted by then. I was called back for a brief discussion with him and one of the testing doctors and then we rode the bus back to the motel.

While the husband was getting tested this morning I made a trip to the business office to check on the infamous pre-authorization request for the PET scan (still pending) and then wandered around looking at all the stunning artwork and views of and from the various buildings. So much marble and granite, so many windows, visitors sitting down at the grand piano in the lobby and playing a tune, people of all ages and cultures walking past, and always a new tunnel in the subway and a decision to make to walk it or not – I could have spent hours. (Some photos at end of post.)

To give Dennis time for a nap, we decided to take the car to the next test instead of riding the bus. The PET scan was scheduled for 4:50 and Dennis would be fasting until it was over. We knew he would need to eat soon after so Mom came along with us and we planned to go right to a restaurant afterwards.

Every time I checked on the request for authorization, the answer was the same. T 4:30 it was still pending and no one could figure out the persistent problem or get satisfactory answers. It was the most expensive test but the most important, so we paid for it to make sure he was able to take it. Insurance will get billed but we have no clue whether or not they will pay anything on it. Oh well.

Mom and I read our books and waited while the husband had his head scanned. The books we’re working on are both very riveting and we wouldn’t have minded waiting a little longer. As it was, the test was over quickly and we were off to have supper at “The Porch”, a converted railroad station family style restaurant.

Tomorrow will wind up the Mayo experience for this time. One test remains, the lumbar tap. I don’t know if I’m excited about this one or not. It’s the most invasive and has a bit more risk to it but is also one that the husband thinks could make a difference in some of his symptoms. It’s at 9 am. All that remains after that is the meeting with our primary specialist Dr. Jones at 3 pm. They expect he will have results from everything to discuss with us. I am so used to waiting a long time to get told of results so I will be surprised if it happens. We will drive home immediately after that.

Something we all think about as we watch the crowds of people at the clinic, on the bus, in the waiting rooms – they are all living out their private battles with illnesses that have happened upon them and changed their lives. Things are not normal anymore for them. They all have stories. They all wonder what their future will hold. Just sayin’, we are not alone by any means.

Mayo Clinic Day 3

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Please tear my hair
out in clumps and put me in a straight jacket. I’ve been talking to my
insurance company.

Me: Yes, hello. I’m calling to check on an authorization for a PET scan for my husband Dennis. Where do we stand on this request?

Insurance company: I can check on that for you, just a moment… I don’t see a request for a PET scan in the notes. I see four other authorizations, blah, blah, blah…

Me: Mayo Clinic sent our Dr.’s notes to you yesterday, and they were told the decision was pending. It’s an out of network issue and it’s complicated. Do you have someone who handles these cases that I can talk to? (I give them a case number and the history
of the last five days phone calls.)

Me: (Calling Mayo
Clinic business desk in a panic.) I’ve just called my insurance to check on the authorization, as you suggested, and they don’t know anything about a request for a PET scan. It’s supposed to happen tomorrow. What can I do?

Insurance company: No, I can’t say that we do and the notes we have don’t mention a PET scan at all.  (She tries to find more
information but comes back with the same answer.)

Clinic rep: We called your insurance at 8 am this morning to see if the authorization was given. They did get our fax yesterday about the Dr.’s evaluation and the matter is still pending. We should know something today.

Me: Why are they not able to find this anywhere in his record? They have the other authorizations but nothing for the PET scan. They say they don’t even have case numbers like the one I was told to give them.

Clinic rep: (explains
all kinds of stuff about a special review board for out of network
authorizations) We gave them the Dr.’s recommendations and I’m sure they will be getting back to us. Don’t worry, we have all day today and most of tomorrow to work this out. It will get resolved.

So I called the insurance company again, got a different rep who said basically the same thing with the added information that she had never heard of a special review board and she would know if there was one (she said). I made sure she knew that this was getting very mysterious and confusing to get two completely conflicting stories about the status of the request. She assured me they did not have a request recorded – but I could get one started. She told me how.

I didn’t want to call the clinic again, but I did. No surprises there – the same report. At least everyone is consistent. I guessed it was up to me. Which story did I want to believe? So, I went with the clinic, and am praying that they were right.  I really did not want to make any more calls. Tomorrow, we will find out if that was a good decision.

A bright spot in the day came when the scheduler called mid-morning and told us we had an appointment for tomorrow 7 am for the neuro-psych evaluation, the one we had been on standby for. We no longer had to keep showing up and waiting for a cancellation. The lumbar puncture was rescheduled for Friday morning and will be followed by an afternoon wrap up with Dr. Jones. We are going home on Friday!

But will probably be coming back in a month or so. Whatever. Maybe by then we will have new insurance, the kind that’s not so special that no one knows about it. Just sayin’…

Mayo Clinic Day 2

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I am beginning to know my way around, where the different buildings are, where to pick up the shuttle, where to go to eat. The husband is getting better at it too, but he doesn’t go anywhere alone and likes to have someone to follow.

Our appointments were not scheduled the way we would have wished but we were told it was possible to change some of them. The schedulers told us “Be a checker!” and wrote it on our instruction sheet. I had to ask what that meant. It’s their suggestion that you be on hand for the test you want to get, in case someone cancels. It’s like “standby” at the airport. We were on hand at 7am and 12 pm, the designated times, with no success. 

After our morning wait, we went down to the business office and asked about our insurance authorization for the needed PET scan. It was not a busy place and a very competent person helped us right away. She made some calls and told me that Dr. Jones’s report had been sent to the insurance company. I will call tomorrow morning and see if it has had any effect.

Going back and forth as many times as we did gave us some good experience riding the shuttle. It is easier and cheaper than driving and will be our main mode of transportation.

We are finding ourselves very easy to entertain. Today we shopped at Walmart, took naps, read, watched TV and ate our snacks in the room. We’re doing one meal a day at a restaurant. Tonight’s choice was Outback.

I am trying to resurrect memories of my year in Rochester while in nursing school. It was so long ago that I’m afraid my dorm attached to Methodist Hospital has been torn down and replaced by some larger, imposing building. I couldn’t find it. Almost everything downtown around the Clinic itself looks unfamiliar to me, although the main street, Broadway, still had many older buildings.

I was relieved to find one place was much the same. Silver Lake park was still there. The lake itself was part of the Zumbro River and there was a power plant connected in some way with it. Because the water was warmed by the power plant it didn’t ice over as quickly as other bodies of water in the area. It was home to great multitudes of Canadian geese all year round and quite a sight to see. I remember times when it was cold enough to warrant goose rescue attempts for those animals that were getting frozen into the ice. The geese are still there, along with a sign asking people not to feed them. A large goose produces 3 lbs. of poop per day and all that creates a significant bacteria problem for the lake.

Tomorrow we will be on standby for the neuro-psych evaluation again, and hopefully will get time to visit my Aunt Evelyn in the afternoon. The husband (and Mom and I) are worried about Julia. Hurricane Florence is heading toward North Carolina and Greensboro is in the center of the all important cone of possibility. We know what hurricanes are like… This world is full of things we can’t control. How plain that is. Just sayin’…

He Is Retiring!

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June 27, 2018

My thinking is overwhelmed. It is the night before the husband’s retirement celebration and I am nervously trying to think through all his medical concerns. I know I will be asked tomorrow about how he is faring and what news we have. It is complicated.

The doctor we talked to today spoke so fast and jumped from one topic to another without explaining the relationship. I had to go home and google the condition to understand much of what he was saying. It was like he was on speed or something. The short of it is that the husband does have a type of heart failure, but not the kind that’s caused by a weak heart muscle. It is the kind where the muscle can’t relax. It is stiffened, and that can be causally related to hypertension (which he has) or sleep apnea (which I think he has) or a few other things like A fib (which he doesn’t have). It can be managed by treating the symptoms. He is already doing that as well as he can.

That is not to say that he doesn’t have the other condition (NPH), but the consensus is that he should be seen for that diagnosis at Mayo Clinic when we go up north. If he has NPH, he will need the specialists they have there. My head is swimming from being on the internet all evening looking at sleep apnea home tests and CPAP machines and applications for an appointment at the Clinic. I don’t even want to figure out how these things are going to fit in the schedule of the next two weeks before I’d like us to be heading out. It’s too much.

Both daughters have their tickets for the family reunion. People are posting their plans to attend. I am just hoping to be there and not in a hospital somewhere with the husband. We talk daily with my mom and I can tell she is a bit skeptical and wonders if we can pull this off. I’m trusting my master planner has it all figured out, and I’m going to be okay with the circumstances, as he arranges them. I think I appear calm, generally, but the fact that I keep going to the refrigerator, or the cookie can is evidence of what is under the surface. Food doesn’t exactly help how I feel but I crave it anyway.

There doesn’t seem to be much time between trips these days. Trips taking the husband to work, trips to the doctor’s office, trips to Good Will, trips to the store. The good thing about having only one vehicle is that the husband and I are together a lot, coming and going places. We are talking in a different way, or rather about different things than usual. Instead of him talking about fans and ventilation (thumbs down in my book) we talk about how he feels about retirement, and the preparations for moving and other stuff I find interesting and necessary. This is a good thing.