Thoughts on Extended Winter

20190310_0808238652243480326681325.jpg

I am thumbing through the photos on my phone – the ones taken out the living room window.  They are mostly black and white because those are the only hues out there most days, snow and not-snow.  The “Charley Brown” pine tree, sorry little thing, is my yardstick on which the snow level creeps up and up, storm after storm.  We have lost all sight of the shrubs planted around the condos. Everyone’s attention is being drawn to the heavy snow loads on their buildings, and guessing how many warm days it will take to melt the huge snowbanks. It is snowing again today.

And so goes the winter in Wisconsin. It is much as I imagined it would be. I am amazed that people lived here for ages without modern heat and shelter, and I suppose some still do. I have my own childhood memories of our family around the oil stove in the living room, and ice building up on the insides of the windows. How different it is now. Our two-bedroom condo is often too warm. We walk around inside in our bare feet, and even our car is warm and ready to go in the attached, heated garage.

It’s been a winter of doctor’s appointments. I think that’s what we did in January, although my memory doesn’t serve me well when the days and weeks are all so similar. February was marked by the big international ski race held in our area, followed by my aunt’s health crisis and several days in the hospital with her, followed by my own winter cold/flu and ensuing isolation. March has brought a return to the time change – we “sprang ahead” an hour this morning. When it stops snowing we will have a couple hours of playing in the snow, plowing out and shoveling.

While we are experiencing winter, the larger experience has been learning to live with “our” changing health status.  Because of this diagnosis the husband has received, Lewy body dementia, we are constantly surrounded by the fight to understand and reverse the disease. No detail of his bodily condition has gone unexamined, and since his way of processing his thoughts is to talk about them, we are all kept aware of each day’s change or lack thereof. He is very aggressive, or proactive about his condition and spends much of his time looking up research papers and discussing them with his brother. We discuss how it wears on us and colors our days, but there is very little else for him to put his thoughts on. I have some understanding of his preoccupation and can’t say that I wouldn’t be searching the same way if I were the one with LBD.

I am trying hard to save some attention for the many blessings that come along with winter isolation. There have been good conversations with Mom and my Uncle Wendell and Aunt Lois. They are my elders who hold much of the family history in their memories and are happy to discuss it.  I’m also very thankful for the many faceted relationship with my youngest brother and his family. They are my closest friends who share activities and meals, joys and sorrows, concerns and silly moments. I am often comforted with their words and aware of us having thrown our “soul anchors” in the same deep waters.

It helps me to write about my new life, and although the words don’t often appear here in my blog, they are being written. There will be a time and a place for them.  I have much encouragement in my writing life, having joined a group of writers whose theme is hope, always hope. The snowbanks are high and it may be June before they are completely gone, but spring is coming. Change is the unchangeable characteristic of the future and keeps me curious and ready to experience more. Bring it on, just sayin’…

20190310_0808425152132584435669693.jpg

Up North: Polar Vortex

20190201_0930204603926757973377261.jpg
My super warm (super crazy) hat, drying out by the door.

Wanting to get my definitions down “cold”, I looked up the word vortex. It’s a whirling mass of water or air that sucks everything into it’s center.  I’m guessing that the word polar means the air is circling around the pole, North pole in this case. We’ve all seen the maps on the weather reports about the circle dipping down into regions it doesn’t usually affect. That’s what happened this last week.

I don’t want to make light of a weather event that resulted in loss of life. Those things that come unexpectedly like storms, tornadoes, tsunamis, forest fires, etc… and catch people off guard are always going to be a problem for the unprepared. But frankly, we hardly noticed the vortex here in Hayward.

It’s winter and everyone expects it to be cold. When it’s more dangerous than usual, a few things get cancelled and we stay inside a little more. The one outstanding consequence for us, particularly the husband, was that even the mail delivery was cancelled one day. Obviously, whoever made up that postal creed about “neither snow, nor rain, nor heat, nor gloom of night can keep these couriers from the swift completion of their appointed rounds” did not live in northern Wisconsin. Nope.

The polar vortex was here for about three days. On one of them we had an appointment with a nurse at the court house. She was there as usual. We got in our vehicle, which is kept in a heated garage, and drove there and kept our appointment with no difficulty.  On the way out of the building I noticed that someone had ridden their bike there and parked it in the bike rack. Personally, I wouldn’t have done that in below zero temps, but that just shows you what people do up north when they have to.

20190131_0705014043566032863893153.jpg
The weather station. 74 – 32 is 42, right? I don’t know why they make us do the math.

My biggest decision these days is whether I want to be too warm when I’m in the house or too cold on my frequent, but brief, trips outside.  Almost all days I wear two layers on my legs, wool socks and shoes with a good thick sole. I do layers on the top too, but count on shedding them inside. Sweatshirts, down shirts, fleece jackets are hanging in the closet, handy, and on the backs of chairs, on the beds – wherever I happen to be when I get too hot.  Sometimes when I get an irritating flash of heat, I look at our indoor/outdoor weather station and it will be 78 degrees or higher inside.  What a problem to have…

People like the husband, who are pretty much limited to walking as their form of exercise, have it rough in this weather.  We don’t have an exercise bike or treadmill that he’s comfortable with, so I have to take him somewhere to walk. We go to the local hospital where the hallways are wide, with handrails and frequent places to sit, eat or use the rest room. We can walk for nearly a mile if we visit all the connected clinics and facilities. They are getting accustomed to seeing us at the assisted living Bistro where we often stop and have lunch. They serve the best $3 soup and sandwich in Hayward.

One of our oft-used mottos up here is “if you don’t like the weather you’re having, wait a few minutes for it to change”. This weekend it’s supposed to be 41 degrees and raining. It will probably get icy and melt some of this nice, dry snow. I’m actually hoping they’re wrong and it will stay below freezing.

I know I looked forward to our first winter back in Hayward – the afternoons reading, the evenings sitting by the fire with my knitting, the quiet snowfalls, the dazzling white, bright and sunny days. I’m trying to think of those things instead of wondering when the lilacs will bloom, or when the garden can be started. It’s best to stay “in the moment”. Just sayin’…

Hello Winter

Although it might sound like I’m complaining, I’m calling it explaining. Northern Wisconsin is a special place, with special conditions that are a bit extreme at times. I’m happy to be here and I’ll deal with it…

I know it’s winter everywhere in this hemisphere, but it’s like REALLY winter here. It’s only 16 days away from the shortest day of the year. They seem shorter than I remember.

I think my sister-in-law has detected some seasonal affective disorder craziness going on and has offered me a light box. I need to read up on SAD. There is definitely a shortage of light here, “up north”. It’s been overcast for the last week or more, and it’s almost like the sun never comes up. It looks like dusk even in the middle of the day.  By 4:30 street lights are coming on and by 5 it’s pitch dark. This makes for a pretty long night.

I miss the colors of fall, spring and summer. It’s not that snow isn’t pretty because it can be stunning.

20181119_0826084881394011658687598.jpg
Stunning, right?

But many days are so gray, in all directions, that it’s hard to believe there are that many gray things in the world. Here at Par Place, we are not in the woods so there is a lot of sky visible. On cloudy days half the field of view, from the horizon up, is varying shades of dirty white, soft gray, to angry gray.  The other half almost mirrors the same shades, with the snow and a few dark green pines thrown in once in a while. Some days a light sprinkle of snow falls constantly. Several days this week there was wind, steady wind, coming off an iceberg somewhere north of here.

One of the windy nights, we were awakened by a noise, repeating itself at random intervals. I tried to figure out what was rapping on the outside wall of our bedroom, until I remembered a clothesline I had coiled up and hung on a nail. It was worth waking up to see the night sky, with the clouds and the moon, and the wind.

20181125_060209775595090090532926.jpg
the night sky

So, I’ll borrow the light box.  I’ll walk on the treadmill if I can’t get myself outside. I’ll try not to stay up too late at night, reading (which I’m prone to do). I will keep busy with all the things I’ve heard people do here, in the winter, in the house, in the dark.  I’ll wait for December 22, when the days start getting longer.

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.

20181105_2226265191044300771156869.jpg
We got the boots.

Up North: Money

Finances.

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.

20181012_0842402802005031956944098.jpg
Secret weapon

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’.)

Mayo Clinic: A Diagnosis

20180915_2000445957117869457069032.jpgWe’re 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 Lewy Body Dementia . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. It is progressive. 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.

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.

20180913_220545609008551010380387.jpg
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.

20180913_0732181130283493743127031.jpg
Sight that greets us each morning as we enter the Gonda Building.
20180913_0731496164652432102131265.jpg
Marble everywhere, even on the walls as art.
20180913_0732426791051807477569158.jpg
Glass sculptures hang over stairway to subway level.
20180913_083554793937616107461112.jpg
Atrium ceiling gives views of the older Mayo Hospital buildings.
20180913_0734355438024962032940998.jpg
Wheelchairs ready in the entryway (like carts at the grocery), for anyone who needs to use one.
20180913_0833494239809860607796908.jpg
Wall of glass in main lobby of Gonda Building.

Mayo Clinic Day 2

20180911_1814562368935469133031945.jpg
Geese on the run at Silver Lake. Ok, they’re not all running.

It’s Day 2 and I”m 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.  But again, the people working here are all helpful and so good at what they do. It wasn’t a bad day.

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. And again, no lines, prompt service, and people asking us what we needed before we had to ask them. Can this place be real?

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, Clara Madsen Hall, 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. There are also some one way streets that I don’t remember being there (but that I will never forget again…).

20180911_1813571689449332886495468.jpg
Ducks and geese abound. Watch where you step.

After dinner we drove around a bit and 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 (who knew?) 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’…

Who Will I Be Next?

There’s nothing like moving to help you think about who you are, who you really are.

For years as a young mother, living in a rural area, I was responsible for growing a lot of our food and preserving it for use during our snowy, winter climate. I learned a lot about gardening, had my own rototiller, and a root cellar. I was baking bread with flour which I ground with my wheat grinder. I was making sauerkraut in stoneware crocks and canning tomatoes, green beans, beets, applesauce – lots of fruits and vegetables. I had a raspberry patch and made jam. I enjoyed that lifestyle so much. I loved being that person, even though it entailed a good bit of work. It was about 8 years of my life, thirty years ago.

Since then I have occasionally tried to garden but it felt more like raising produce for insects (or whoever it was who ate it before I got there to harvest). One year I canned tomatoes because the farms here in Florida were practically giving them away – they didn’t have workers to pick them. My Wisconsin persona brought jars, equipment, a pressure canner and expectations to my new home and they have been largely unused since then. I have kept them on a shelf in the garage. I have avoided making decisions that needed to be made.

Who am I now? Even more important, who am I likely to be in the future? It’s not that I don’t still like the thought of gardening, or of having good food put up for the winter. It’s that moving has made me decide not to be a person defined by “my stuff”. It felt empowering to put the jars in the recycling bin, knowing that they could be replaced pretty easily up north, if needed. The person I am is one who adapts to the reasonable default, whatever that is going to be.

20180625_1012132373484492861269040.jpg
All those perfectly good, jars and lids – somehow doesn’t seem right…

Another similar moment (I know, two in one day!!) came in the course of taking the husband to work. He has been dreading closing up his office, making decisions about his boxes of books and papers. He has spoken of it several times so I offered to help him. We took a small table and I arranged all his books where his coworkers could look them over and help themselves. I went through his periodicals and we decided to pitch all but the last year’s magazines.

It’s probably harder for someone who has had a long career doing what they were educated to do. They really become defined by their job. I think the husband’s books, his physics notes from college (yellowed, with bugs, and copious dust), his work memos from eons ago, and bits and pieces of ventilation equipment were defining him to a great extent. He left the room and I took care of some of it for him (dumpster) but I’m not saying exactly what because he reads this too.  If he can actually remember something he needs from it all I will go dumpster diving and look for it. I’m betting there will not be a need.

Now we are freer than we were, but not as free as we will finally be in a couple weeks. We will be free to adapt and be who we really are in our new circumstances. For me, the job will be easier without the canning jars along for the ride, just sayin’…