The New Normal (Our Life with LBD)

I don’t really know if it can be called normal. Normal seems to mean that something stays the same over a period of time, long enough that you can grow used to it. We can’t seem to grow used to things that are changing all the time as we deal with the husband’s problems. “Normal” has come to mean regular frustration as he deals with less of almost everything he needs in every situation.

It snowed yesterday and was wet, slushy and slippery everywhere we went. The husband’s shoes were getting wet and were clearly not what he would need for winter, so today we shopped for boots. This is something we both remember him doing by himself, but since he no longer drives, I am with him everywhere he goes.

The first thing we had to do in the shoe department was find a place to sit down. Dennis can’t walk very far or stand very long without getting tired, and he always has to sit to put on his shoes. We struggled. Putting on boots can be such hard work. I fetched pair after pair from the shelves, opened them up and pulled and pushed until he could get his foot down inside. Each time he had to stand and test out the feel of the boot. Up and down, over and over. He was worried about the small bench he was on as it would start to tip as he pushed himself up. We finally found a pair. I think he would have liked to go home at that point, but he had also wanted to get a new watch.

After pointing him in the direction of the jewelry counter, I thought, briefly, that I would let him look over the options and choose. But no, I decided it would be easier if I helped him so we went together.  His vision is one area where “less” keeps happening. In order to see the time he decided the face of the watch had to be white, with dark hands and numbers that were easy to read. No shiny reflective surfaces would be suitable. The band had to be easy to close. He would have liked one that showed the date, but finally decided that he would do without since he couldn’t read those small letters anyway. It didn’t take us very long to pick one out but by then he was really tired. He went to the pharmacy where they have benches, and sat waiting while I got a few groceries.

And we are getting very good at finding restrooms in all the places we go. This was Walmart and he had to walk to the far end of the store for that before we could leave. He walks very carefully, and very slowly.

Often we think of dementia as robbing a person of their memory first. That is not a given with Lewy body dementia. Right now some of the husband’s most frustrating symptoms are motor related. He has less strength, less balance, less flexibility, less stamina. He will tell you that he is also forgetful but I find that he can make himself remember most anything he wants to, given enough time. He may get overwhelmed with thinking too hard, but he still thinks correctly. He remembers. And that is what is hard – remembering what he used to be able to do, but no longer can.

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We got the boots.

I Have Cupolas

No, it’s not a disease or something to hold a beverage. Read on…

On today’s walk, my goal was to check out the corner of my brother’s property that is storage for all the large things he doesn’t want to look at all the time.  I knew that there were two metal structures there, cupolas from an old barn. I had seen them years before, on the ground, near the barn on the property and just assumed that they were from that barn. My brother said, no – they did not fit – and since they were so large, moved them out of the way, into the storage corner.

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There they were. They were large. They were also rusted, a bit banged up, and looking forlorn with tall grass growing up the sides and an old metal drag leaning up against them. My uncle, who was with me, explained that they were galvanized steel which had lost the galvanizing in spots, leading to the rust. Peering up into them showed that the vents were still covered with wire mesh to keep the birds and other animals from going in. I found myself attracted to them even in their dilapidated state.

A cupola is really a ventilation device for the top of a barn or any building that is tight enough to require ventilation. Barns have lofts where hay is stored and often the hay is put in without having dried fully. If it is tightly packed, organisms in the hay can produce enough heat to spontaneously combust. Barns can burn down because of this. Also, in the winter when cattle are kept in the barn, moisture levels rise and the environment can get quite drippy. And so, cupolas are necessary. But where did these cupolas come from? I had not heard the answer.

As I wondered, out loud, my uncle said “What about the barn out on the farm near Round Lake?” That barn had come down in a windstorm years before (read about it here). I had grown up looking at that barn but could not remember if it had cupolas. I knew that after it fell, my dad had cleared the wreckage and made a pretty impressive bonfire.

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One storm, and it was a pile of rubble…

Fortunately, there are many pictures of that barn before it fell and in one of them, a cupola is clearly visible. It looks just like the ones stored in the field. I am even more fond of them now that I know where they came from. My brother has given them to me, to do with as I wish. I wish to enjoy them, see them and use them for something, but what? I’m just sayin’ I could use some suggestions here…

Do Something Fun

Why not? Fun can be found anywhere if you are able to search for it. Yesterday’s excursion was to see a little of the history in the Rochester MN area, and to have a good meal for the day.

It is a challenge to eat well when traveling. Schedules are erratic, fast food is everywhere and may be the only thing we have time for, so we looked at the restaurant recommendations in the motel guide. The Hubbell House in Mantorville looked interesting and fun.

Mantorville is a small, historic town about 20 miles from Rochester. The Hubbell House was the first establishment in the town, way back in 1854.

Hubbell House, on the one main intersection, with the other three corners held down by a coffee house, an ice cream shoppe and a saloon.
The lobby much as it was when the stagecoach line was the main reason for the establishment.

We were there early, but others were already arriving. The various dining areas can hold over 300 people. We had an efficient, grandmotherly server with the authentic Minnesota accent, and a good knowledge of local history. She assured us that Garrison Keiler had never been there, although they do have record of many other famous guests.

Placemats showed signatures of all those famous guests.

Our meal was good, as was the service. We shared beef tips with wild rice. We took bread pudding with raisins and caramel sauce home with us for dessert. A quiet, reserved atmosphere, surrounded by antique decor, real oil lamps glowing on each table, white cloth napkins, all made the experience special. The familiar, but varied menu choices made it comfortable. The historic details made it interesting.

This country is full of small, interesting places to visit and experience. I’m glad we found this one.

Quarry Hill

The husband and I are back at the clinic in Rochester, following up on a couple of medical recommendations. We get to stay in a motel and eat at restaurants every day so I’ve decided to call it a vacation. I’m much more familiar with parking, the traffic patterns, and the locations of our appointments, so everything is going well.

We have had opportunity to look around the city during our wait time. It’s been over 40 years since I went to nursing school here – long enough that most of the buildings I remember have been torn down and replaced.

One memory I had was of a strangely shaped hill where students would go to have picnics and hang out, relax… I looked at a list of parks and found Quarry Hill Nature Center. It sounded familiar and as we drove there, I remembered more and more.

It was a good place to wait, to see and learn about local wildlife. There are a lot of trails for walking, but since the husband is not a hiker anymore, we watched birds in a feeding area.

Quarry Hill was made into a park a couple years after I left school and I was glad to find it again. I wish I had kept in contact with my friends in nursing school because I’d love to have help remembering some of these places, places I never thought I would forget.

Retirement 101

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 I am not a financial expert. The whole subject of taxation confuses/bores me but I realize it is a necessary evil to know something about it. I write about it mainly to remember what has happened, but perhaps someone else can be spared some pain by reading of our experience.

If you are blessed with work during your life and have been able to put any of it into savings, there will come a time called retirement (age 72) when the government says you have to start using this money. You must take out a certain percentage of your savings every year, called an RMD or required minimum distribution. If you don’t get the hang of it the very first year, you are given a little mercy – if you apply for it. It’s almost a “given” and happens to people all the time. It happened to us. I think I’ve written about it already.

2016 was a year for mistakes. We missed the RMD by four days for one, and we also made a mistake in figuring what we owed. As a result the IRS punished us with a penalty –  50% of what our RMD would have been. When we discovered what had happened, we hired a CPA to submit an amended return for 2016. He also discovered our mistake which resulted in us being owed a return for that year. No one was alarmed at this point. It was expected that we would be forgiven the penalty for the RMD.

We started getting letters telling us to pay our penalty. They were counting the days we were “overdue” and charging interest on the debt. Twice over a period of several months our CPA called the IRS hotline, explained the situation and was told that since the amended return had been filed they would eventually get to it. We could ignore the letters. They said they put a hold on any further action and wouldn’t be bothering us about the matter.

But the letters didn’t stop, and the amount they said we owed kept climbing. Finally one day we got a notice that since we hadn’t paid, the IRS was going to start taking it out of our social security checks. Yes, they can do that. Once again, our CPA spent a couple of hours on the phone trying to find out why this was happening. The IRS couldn’t locate our amended return. One office had sent it to another and in between, it disappeared. It was resubmitted immediately and once again we were assured that any action against us would be put on hold. Nevertheless, money was taken out of the husband’s SSI check that month.

Our CPA had decided to get an extension for our 2017 taxes. He reasoned that we should get 2016 out of the way first, especially since the IRS didn’t seem to be getting the message that we didn’t owe them anything. We were due a return for 2017 and he was afraid they would take it. By this time, he had gotten a tax advocate for us – a person who almost walks your return from office to office until it is resolved and no longer a problem. His extensive conversation with the IRS gave him assurance that it would be okay to file for 2017. There would be no action to take the return we were owed.

Today we got a letter saying they took our 2017 return and applied it to our “debt”. It’s beginning to seem like the only sure thing is that they WILL DO everything they say they WON’T DO.  I feel like my favorite government agency has me on a hit list. In their defense, I have heard that they have had severe budget cuts and have way too few employees. But how is this ever to be solved? We pay a lot of tax – it’s not like we are paying less than we owe.

I’m just saying, if this ever gets straightened out, I’m throwing a party. #frustratedtaxpayer

My Elephant

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.

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In searching for reasons why he was diagnosed with Lew 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. 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’…

Wonderful Day

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Every now and then, when I really need a wonderful day, one comes along. Of course, all days, even the worst of them, have something wonderful about them if you have enough energy to look for it. But this day, it was full of back to back niceness, the likes of which I have not seen in a while.

We went to the smallest and earliest of the three church services at Hayward Wesleyan, where we have started to feel at home. It was satisfying, encouraging, and did not make the husband cry (well, maybe a little, but he held it together…). The weather got beautiful so we went for a walk afterward, just the two of us. He felt good today, noticeably good.

Breakfast with the relatives after church. It’s a ritual. We go to Flat Creek Eatery for the fellowship more than the food and it’s always good to spend time with my aunts and uncles and Mom. Smiths, Boones, and lots of coffee.

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We are working on the Hayward Cluster now, soon to go on to Seeley, then Cable.

My brother, who is also a Dennis, his wife and I had planned a hike for the afternoon. By 2:30 we were out in the woods and it was perfectly gorgeous. We have a goal of hiking the complete distance from Hayward to the end of the Birkiebeiner trail near Cable, in sections. This was probably the shortest section, 5.7 miles on my counter, Hatchery Creek Trail to Mosquito Brook. I LOVE BEING IN THE WOODS. Enough said.

This is an  “intermediate difficulty” single track trail. The real difficulty is jumping out of the way when a fat tire bike suddenly appears, going fast!
This was midway. The signs are pointing to them, but those are not their names. 

 

Fungus fans, what do you call these gorgeous things? 
For some hard to figure reason, someone thought this lovely table should be chained and weighted. 
These are wintergreen berries, common on the forest floor “up north”. Tasty.
A “grandfather” of the forest in the piney section of the walk.
Several sturdy shelters have been built along the trails – used mostly as a warming house for winter skiers. 
Mosquito (“Skeeter”) Brook, running high through the forest.

The husband had time for a good rest while we were gone. We got back just in time for a cup of soup before heading off to the next fun thing. Choir.

I didn’t realize how much I have missed music – good, cooperatively produced music. Our community has formed a volunteer choir which has performed a Christmas cantata of some sort for the last 20+ years. This year the director is a … hmm, dynamic might be the word, young woman who is filled with the spirit of worship and loves to do this job. The two hours went so fast! I was impressed and I know I am going to love this time each week. The husband is going to love it too. I can tell. And it will be a great way for us to get to know some people in our new location.

Four fun things in one day has me worried that I may have used up my quota for the week. I’m kidding. There are enough good things “up north” to fill the whole week, I’m sure. And I will be looking for them.

The husband is trying very hard to stick to his keto diet, lose weight and figure out how to regard this Lewy Body Dementia thing. When he is feeling positive, the world seems a bit brighter and lighter in its weightiness. Today he walked and talked much like his old self. We are wanting lots more of this kind of day. Just sayin’, who wouldn’t?

Mid September “Up North”

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This is a September sky in Wisconsin.

September is more than half over, wow.

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 no 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’…

P.S. The husband, a.k.a. “the fan man”, got a work related call today.  His brain is in high gear when it comes to ventilation and fans. He was proud that his company still refers the “sticky” problems to  him – and he deals with them.

Day 4 at Mayo Clinic

Day 4 at Mayo Clinic had its up and downs, but was also the day that was the most accomplished so far.

 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.

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Mom wanted the “Bomb ass gravy”. I kind of favored the “cold mac and crack”. If nothing else they had cool names.

 

 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.

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Sight that greets us each morning as we enter the Gonda Building.
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Marble everywhere, even on the walls as art.
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Glass sculptures hang over stairway to subway level.
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Atrium ceiling gives views of the older Mayo Hospital buildings.
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Wheelchairs ready in the entryway (like carts at the grocery), for anyone who needs to use one.
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Wall of glass in main lobby of Gonda Building.

Mayo Clinic Day 3

Please tear my hair out in clumps and put me in a straight jacket. I’ve been talking to my insurance company. For the purpose of this post, the numerous automated screenings and niceties have been left out of the conversations which took about an hour altogether. 

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.)

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.)

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?

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  tomorrow, at 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 (sad emoji face). Whatever. Maybe by then we will have new insurance, the kind that’s not so special that no one knows about it. Just sayin’…

Many thanks to my Aunt Evelyn Boone for a calming, pleasant afternoon visit and a wonderful dinner at her residence. Best thing all day!