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…

River Fascination

I am becoming more and more fascinated by a river that has been almost in my backyard without my paying much attention to it. The Mississippi. Most people don’t think of the state of Wisconsin when they consider the “mighty Mississipp” but they should. A good deal of the state’s western border is marked by the Mississippi and the geography it creates is often breathtaking.

Those of us in northern Wisconsin have always had to cross it on our way to the closest major airport in Minneapolis. I grew bit more familiar with it when I was in nursing school years ago, going back and forth from home took me through river cities like Red Wing and Stillwater where beautiful bridges afford views from the car windows. Most recently I’ve enjoyed the land around the river at La Crosse. It’s here that three rivers come together, the Black River, the La Crosse River and the Mississippi. Throw in some 500 foot bluffs, a wide alluvial plain and what early French traders called coulees and you have some pretty interesting terrain.

A few steps up the hill and I am above the roof line of my brother’s house.

My brother lives in Onalaska, which is close to La Crosse. His house is on the assent to one of the bluffs that looks out over the river valley. He and his neighbors all have wicked steep driveways and some of their houses hang on the sides of the hills in a precarious way, but the oak forests and the views are worth it to them.

We stayed at my brother’s house on our last trip and I decided to take a hike up the bluff in the late afternoon. There were still lots of leaves on the trees, but the view through them was good enough to be impressive. This kind of natural beauty is so refreshing to me that I have to share it. Hope you love it too.

First, you have to look at the forest floor. The trail was a bit steep in places and I had to watch my feet, but the leaves were so gorgeous I didn’t mind.

Somehow, trees are born knowing how to make these perfectly lovely shapes over and over every season. Thank you God, for trees.

I tried to get some good shots of the river down below, across the plain, but the trees made it difficult to focus in the distance. It’s a forest up there and it was getting dark.

Yeah, I know, what a mess. 

The sky was full of dark purple clouds that cast deep shadows over the landscape.

Trying to show the incline, lots of downed trees and rock outcroppings on the way.

 

And lots of mossy, green places. I know I said this was fascination with a river, and then had almost no pictures of it at all. But it’s the geography that the river produces that really catches my attention. The bluff was remarkable, even though I didn’t quite reach the top. I decided to turn back to honor the sign that said it was private property and to keep off.

Thanks for walking Wisconsin with me!

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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.

On the one main intersection, 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

Is Fall Fallen?

The grass is still green. There are still leaves on some of the trees. But, the white stuff is snow and it’s coming down as a storm.

Since the picture above was taken, we have been swept into white-out condition with wind gusts and other weather drama. In a way, the extreme earliness of cold weather is exciting and part of what I love about the snowy north. I love it from within our cozy living room. I love it at the begining of the six or seven month stretch (when the snowbanks are not blocking the view).

We may still get an Indian summer in November but right now it’s hard to see it.

I like white. It’s a pretty color.

Who Indeed?

A post written in five minutes on the prompt “who” for Five Minute Friday.  Check it out if you want some inspiration to write. 

Who?

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I’m sorry but I don’t think  you’re my grandson (that I’ve had never). Photo by Oscar Mikols on Pexels.com

 

For the first time ever, I have gotten a call from someone calling me Grandma. “Who are you?” I asked.

“I am your grandson.” He said, in a masculine adult voice.

“Oh, really? I don’t have any grandsons. Would you like to try another approach?” Click.

I can hardly believe that anyone would take the time necessary to make calls to scores of people, hoping to find one gullible person who actually has a grandson of a certain age. They hope to find someone who doesn’t even recognize their grandson’s voice or know his circumstances. I imagine if our conversation would have gone on longer I would have heard a story that ended with the need for funds being sent. But who does these things, and who is so confused that they respond to them and send them money? Inconceivable (at least for me.) Who?  Just sayin’…

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’…

The 15th of October

I have a friend (at least one, thank God!) who has a birthday today. What a joy it is to me to think about someone who is special and dear, and be able to share those thoughts publicly. Meet my friend Arlette.

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There is something about her that actually looks French, but I’m not sure what it is…

You will notice that she has a name which I think both looks and sounds French. She is of French origin and this comes through in so many of her ways. Of course, there is the accent which she has not been able to shed (nor should she) even though she is fluently English speaking. I hardly ever have to wonder what she is saying. I love the way she and her French-speaking husband call each other “chere”. Sometimes, she will be thinking of an exact word in French but not able to immediately find the English equivalent. She will question Dwight and together they will come up with it. Endearing.

I met Arlette because our husbands were thrust into work together. The men set up an office in Sarasota for their company, an American subsidiary of a French corporation. Although we women knew each other and the Shackelfords were very kind in helping us get settled in Florida, we did not automatically jump into friendship. That started when Arlette agreed to tutor my home-schooled daughters in their French lessons. Merci beacoup mon ami!

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Two people who speak French very well, and a daughter who still knows a little of it, I think.

As time progressed, we became better friends, mainly because Arlette is an accomplished hostess (which she has trouble admitting, but it is true). Her invitations were NEVER turned down. I don’t have any other friends who do a small, intimate dinner evening for two or three couples so excellently. She loves beautiful flowers in simple vases, interesting tableware, luxurious touches like cloth napkins, just the right music, and well-planned food choices. She believes in appetizers, which I have to admit were a new thing for me. My family experience – we sat down and ate. At Arlette’s house I learned to enjoy a warm up meal before the real thing.

We deepened our friendship in the last ten years because we learned of common things in our faith worldview. I felt Arlette would really enjoy Bible Study Fellowship, which I was attending. She finally agreed to check it out, hoping to put an end to my annoying requests. I was right, she liked it. We have had nearly ten years of enjoying spiritual growth together. It is hard to put into words what sharing our hearts, and mutually acknowledging what God is doing in our lives has done for me. I view her friendship as a gift from God, evidence that he kindly answers my need for companionship.

Arlette is my friend who says she is not brave but nonetheless allows herself to be talked into outings a bit past her comfort zone, like expeditions in the kayak. She has braved a weekend in a motel with me, let the husband and I have free overnight stays in her home, exercised me with many long walks, hauled my furniture and boxes around, advised me on home décor, helped me plan parties, listened to me for hours on end. There are some things I haven’t convinced her to do with me yet, but the potential is still there. I don’t intend to let this girl rest.

So, happy birthday, my friend. Don’t worry about getting older. You are still younger than me and, barring a miracle, will always be. God bless you today and always. I love and appreciate you.

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You are lovely!