A good part of my life has revolved around music and playing the piano. For a few years I even taught beginning piano students and had a studio in my home. A friend and I were pianists for our church as well. Many times she would say “You play today. I can’t do it very well when it hurts this much.” I was in early stages of arthritis in my fingers as well, but I couldn’t imagine how the hurt could be bad enough to keep me from playing. Playing piano didn’t hurt at all, really.
Now, I get it. The last couple of months have been the worst ever. I’ve had flares at times when one or two joints would swell with inflammation and be tender, but lately it’s more than that. My left thumb is the upcoming surgery site, but the right hand is equally painful in the fingers, not the thumb. One finger is swollen so much that I had to go to a jeweler and have the ring cut off of it. Almost everything I do with my hands has some degree of pain associated with it.
I’ve read that the 50% of the hand’s work is done by the thumb. My left hand knows that very well because it’s pretty much useless for holding on to anything that requires thumb opposition. But fingers are so important too. Unfortunately, I don’t think there are good surgical fixes for finger joints. Right now it hurts to:
⁃ manipulate, or lift pots and pans in the kitchen. They are heavy and have to be grasped.
⁃ Fold laundry, especially little movements like turning socks right side out.
⁃ Put on socks and shoes, especially pulling ties tight or pulling zippers on boots
⁃ Hold small objects tightly, goodbye any kind of handwork
⁃ Type, even on sensitive keyboards like my iPad
⁃ Pull the sheets and blankets when making my bed
⁃ Open lids of jars, milk and juice cartons. Most any kind of packaging is not my friend.
Most of the time I plow through these activities anyway because the pain of movement is short lived. But I have progressed into a different stage now where pain occurs out of nowhere, without movement. It is more constant and has a “burning” nature. All of this just emphasizes to me how important hands are to life.
I’m sure having my left thumb fixed will eventually make things better. My doctor said that I will hate her for the first post-op month, dislike her for the second month, and thank her after the third. Reports also say that this surgery is long lasting with good function up to twenty years later. So the countdown continues, five more days.
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.
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’.)
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.
Right away, let me say that if you have to get sick, this is a really good place to go.
We left my brother’s home near LaCrosse early this morning and in a little over an hour we were in Rochester, MN. The clinic and its hospitals are the focal point of this small city and it is fairly easy to navigate. There are people waiting in every parking lot and in every lobby to answer questions for newcomers like us – they are used to doing it and because they have developed good systems things went smoothly for us.
I was amazed that we drove to the 9th floor (top) of the parking garage and were headed back down again before we found an empty spot, and at such an early hour. There were rows of sturdy wheel chairs at curbside for anyone not inclined to walk, good signage that was easy to follow. This stuff is so important! Knowing where to park, and where to go for appointments is one of my main concerns in going to a new place.
There were no long lines and no extended waiting periods! We might run into this later on but today was extraordinarily good in that respect. After check-in we were helped by a appointment specialist, Mr. Smith and put into an exam room to wait for our doctor, Dr. Jones. “Smith and Jones” jokes were exchanged.
Dr. Jones got a detailed report from Dennis. He seemed to be a good listener and made notes as we went along through the exam. He wasn’t a white lab coat doctor which I thought was interesting. He had a nice, expensive looking wool tweed suit, longish curly dark hair, and a trimmed beard. He gave Dennis quite a few tests as he talked with him and at the end announced that he had mild cognitive impairment, maybe borderline dementia. We knew that, but it was nice that someone else actually noticed it too. He is in favor of finding out why.
Not too long after the evaluation, the husband had his brain MRI, with and without scary sounding contrast medium. Very nice professionals conducted this testing with very little wait time. Mom and I had time to eat a light lunch while this was going on. We were done and on our way to the motel before 3 pm. The accommodations are clean, comfortable, adequate.
We rested, had a “comfort” dinner at Olive Garden and are back in our motel ready to get to sleep early.
Dennis was supposed to have a PET scan tomorrow but because it was not yet authorized, they postponed it until Thursday afternoon. I’m hoping the insurance will cover it because Dr. Jones said it was probably the most definitive test and will show whether he has normal pressure hydrocephalus (NPH), Alzheimer’s disease (AD) or Lewy body dementia (LBD). We need to get authorized for this one and that is our prayer for this visit.
The lumbar puncture will take place on Thursday morning. The neuro-psych evaluation was scheduled for next Monday but we are going to be waiting for cancellations the next two days and hoping to get it done this week. It’s a nice enough motel but not where we want to live for that long.
Other appointments the doctor felt to be necessary were another sleep study and an ophthalmology work-up. Those can be done later in October – we will come back for them.
So far, so good. Thank you to all who have prayed for the success of our trip. It is going as well as can be hoped for. We are in fairly good spirits.
Here we sit, early on Wednesday evening, at the local Perkins. Hayward is not a big city. It has been a town of about 2300, give or take a few, ever since I was living here as a child. Of all the common chain restaurants, only Perkins, Subway, McDonalds and Dairy Queen have survived. Because Perkins runs a special on Wednesdays, allowing seniors half price off select meals, we have been here every week since our move. It is Lois and Wendell night.
Meet some more of my “up north” family. Mom was blessed with siblings Pearl, Donald, Olive, Ervin, Wendell and John. They were spread out over enough time that the younger ones, Wendell, Mom and John were almost like a separate family. Their brothers and sisters were out of the house and married, leaving the threesome to be companions to each other. They are the survivors in the family and strangely enough, they all three have ended up here in the communities they know and love.
On Wednesdays, Wendell and his wife Lois drive into Hayward for shopping and appointments. They are usually done around 5 pm and give Mom a call to join them for dinner at Perkins. They have become overly familiar with everything on the senior menu. The waiter jokes with them like they are old buddies and seats them at the same table most every time. Even the husband and I have entered into the rituals. I know to close the blinds so light from the setting sun doesn’t shine in Lois’s eyes and we all know not to order the grilled asparagus and that the blue cheese dressing is homemade and really good.
Wendell has been a schoolteacher for much of his life, which would explain his love for books. As he neared retirement he went into the paperback bookstore business and actually built a store next to his retirement home in the nearby town of Stone Lake. Stone Lake is even smaller than Hayward – you can drive through it in less than 30 seconds.
However, I have always thought of my Uncle Wendell as having a secret love for farming. I remember him coming to help my mom and dad on their farm when I was a child. I think he would have sought this line of work had it provided enough for a living. As evidence of this secret love, my uncle of 80+ years still has a tractor, which he enjoys driving, that is, up until a couple of months ago.
Thin, wiry, agile for his age and indomitable of spirit, Uncle Wendell was out with the tractor one day when his daughter and granddaughter were visiting. I have heard them say they felt guilty for what happened since it was because they were there that the tractor was being demonstrated. On the other hand, had they not been there, it might have happened anyway and the outcome could have been much worse.
Although I have seen semi-demonstrations of what happened, it’s difficult to visualize and has an aura of the near miraculous about it. Standing on the tractor, near the one who was operating it, my uncle reached forward for one of the levers, lost balance and tumbled off – under the moving machine. He was, however, on the roll and managed to somersault through and out the other side. He got up, dusted himself off and with help, walked to his brother’s house where he was whisked off to the Emergency Room. Consensus was that it was better not to give details to Lois, who did not witness the event.
Of course, she eventually got filled in since it was hard to hide the broken shoulder, bruised ribs and back brace that he wore for weeks. He was not allowed to drive during this convalescence which was quite an irritation to him, and when the brace was no longer needed he joked about being released from prison. Now that he is better, he is again driving the 20 miles into Hayward for our Wednesday rituals. Did I mention that he is indomitable?
Nevertheless, Uncle Wendell does not drive long distances and even last winter when I visited I was “hired” to drive them to a doctor appointment in Ashland. Aunt Lois is a good match for him in spirit but she has vision problems and relies on him in many ways. The two of them are looking ahead at what difficulties winter might give them and asking God for wisdom.
Well, it seems perfectly clear to me that I am “up north” to help mom, but also to help the whole family in whatever way I can. God puts us in family groups because there is safety in numbers and how wonderful it is when we can help each other in practical ways. And because it is the way God works, there is benefit for both the helpee and the helper. I get a bit protective of the elderly people I love and don’t mind sounding bossy. I’m encouraging them to move closer for the winter and let me drive for them on the longer trips. We will see what they decide.
Concluding, this seems like one more good reason why I am supposed to be where I am. It seems wonderful to me and I’m glad to I have a part to play, just sayin’…
This is not the first time I’ve come in Mom’s room and found her horizontal surfaces covered with stacks of old letters, poems, pictures and memorabilia that she’s sorting through. She puts items that go together in zip lock bags ready to be offered to the person most likely to be interested in them.
“Do you think anyone will want to read these letters? They have a lot of family history in them, but I don’t know how to contact any of the people anymore.”
It’s habit with me to think of Google for anything I don’t know and I suggest she plug in some names and try it. She pulls out some faded black and white photos on thick cardboard with finely scalloped edges. They are Christmas cards from three different years picturing a family. In one, parents, four children and dog are sitting, close together, on the floor in front of a fireplace. The room is darkened and light from the fire is glowing on their faces and casting shadows behind them. The father and his son are wearing suits and two of the girls have matching dresses. The mother is in shadow except for the top of her face and she is smiling. She wears glasses. They all look peaceful, happy as they gaze at the flames. Handwritten below is “A Merry Christmas from the G. Wesches”. I wonder who was taking such artful pictures back in 1950.
Another one has the children lined up in order of height and age and this one is signed by the parents and the names of the children are listed. They are Harold, Geraldine, Patricia and Alice Jean. I pick up my smartphone and plug the name Harold Wesche into the search bar. Mom explains that these people were not relatives but the family of a local doctor in her hometown. The doctor made house calls and impressed her as being such a kind man – and one who sent cards to his patients at holiday time.
The search engine comes up with over 100 records of this name and as I look at them I find one who is 82 years old – that would be about right. The website gets to work collecting and verifying information on Harold. I know they are going to charge something at the end, and that we are not going to buy anything from them, but the small paragraph they give us for free does help Mom remember. He is the Harold in the Christmas picture. She remembers more.
There was one summer that this family vacationed at Meyer’s Log Cabin Resort on Round Lake. Mom’s friend Donna was asked to come with the family to help entertain the children. They let Gwen (Mom) come along to keep Donna company. This was quite a treat for both Gwen and Donna to have a week at the lake. The Wesche children were cute kids too, so it was not an undesirable responsibility.
One day the parents took the children with them on an outing. Donna and Gwen were given the day off to do whatever they liked at the resort. They decided they would take a boat ride. They went out into the middle of this fairly large lake and felt very adventurous.
This story interests me because Meyers Log Cabins was less than a mile from the farm where Mom and Dad went to live after they were married six years later. I grew up visiting my friend Barbara Meyer and swimming in Round Lake at that resort. I have never heard of Mom’s experience there and she said she would not have thought to tell me of it if the Christmas pictures had not been found. She is still trying to pull out the end of the story from the memory bank.
“I don’t know what we did but it might have been something that made us feel a little guilty. I think it had something to do with hot dogs. Maybe we took more of them than we should have…” I laugh, because Mom still loves hot dogs.
“Do you think it might not be good to dig through all this stuff, all these memories from so long ago?” she asks.
I tell her I think it’s okay, and the truth is I think it’s a gift to remember stories from the past. It’s an opportunity to think of people, to wonder about them, and especially to mention them in prayer. It is never too late to care, to look for someone, to possibly even get in touch with them and tell them a story.
So, if Harold Wesche or any of his family reads this story, Mom wants to know if you’d like to have these pictures of your younger self. If not, I will keep them to remind myself of one of the reasons I am glad to have come back to Wisconsin to do life with Mom. I want to hear more stories that I’ve never heard before.
I’m reviewing my memorized psalm as I walk. It’s been a while but this part comes easily back to me “As for man, his days are like the grass. He flourishes like a flower of the field; the wind blows over it and it is gone and its place remembers it no more.” How easily I fit into this meadow and take my place with the grass and the flowers as they age.
I get to see it! My gratitude is sharpened because I am daily with people I love who do not get to see it so clearly. How blessed I am. Tonight, across the table from me, one of my people who struggles to see at all, related that even eating had lost much of its appeal. She cannot see what she is eating. I try to imagine eating food that I cannot see.
Today I marveled at how well my computer and internet were working. Today I did ordinary things like cooking breakfast for the husband, writing a letter to a friend. scrubbing sinks and making beds, Today I prayed and considered my family, my friends. Today I took an evening walk.
My mind 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.
My hands are telling me things lately. They are tired of being cut, scraped, banged up, painted, scrubbed… Most of all they are tired of hurting. The stiff and swollen joints still have to pull, pry, twist and grip in order to survive. My hands talk about pain and its very real presence.
“Pain is like an angry neighbor. He is not moving away anytime soon. He is constantly looking over the fence and his stare, his piercing eyes, can be felt following our every move. Sometimes he scowls, sometimes he kicks the fence, sometimes he gets really confrontational and yells at us. Often he goes back in the house, angry, pouting and sits, but even then we can feel him looking out his window at us, wishing us ill.”
“But he is a neighbor and it’s better to get along than not. we’ve gotten used to him. We know his name, his whereabouts, his nature, and generally how to pacify him. We think we prefer him to others who are nastier, and more deadly. He is OUR pain, like him or not.”
I have been asked when and where we are moving, by people who seem surprised. I have thought about it so much, for so long, that it seems everyone must know. And now I find out that they haven’t been reading my mind…
The husband and I, and our two daughters moved to Florida in 1987. Our children were young and did most of their growing up here. My parents spent their winters here with us. We had frequent visits from my brothers and their families. Over the years we developed many friends through church, work, our daughters school activities, and the neighborhoods we lived in. Bradenton was a busy, happy place for us, filled with people we loved to be around.
You know the scene as the lights start winking out in the big white farmhouse and John Boy says good night? And one by one, the whole family responds to him? They had multi-generational living back then. It was more common because the world wasn’t so easily traveled. There was more chance of children meeting and marrying someone in their own community and living close. More people made a living on farms and in small towns. Well, that all changed, and many other things with it.
Our family aged into a different phase. The girls went to school in different, sometimes far away places. They had choices of where to work, where to live. They experienced that feeling, close to disdain, toward their hometown, the place they knew everything about – both good and bad. They left to see what other places were like, if they were better. Sometimes the available job opportunities made the choice for them.
Things changed for my parents too. Travel became more of a chore, and then my dad died. By herself, mom felt more like a burden and lonelier wherever she was. Last winter she stayed with us in Florida for two months and then went home to Wisconsin. This winter she didn’t want to travel away from home at all.
Mom lives in Wisconsin, one daughter lives in North Carolina and the other in Seattle (only Alaska would be further and more inconvenient). I’m left with this burning question the last few years – how can I possibly spend time with the people that I know best and love dearly when they are scattered all over the country? Why do I settle for only seeing them on vacations and at funerals and weddings? I began to ask God to help me do something about the situation.
The plan to move has come about gradually, but I’m sure you can see the sense in it. It’s the only way we can put feet to the prayer, and the desire to be closer to at least one of the individuals we care about. We have been tied to the area by the husband’s good job for the last thirty years but he will retire very soon, leaving us to choose to go elsewhere if we wish. We do wish.
There are advantages in taking time to plan and work toward a move. I’ve been studying downsizing and paring down for a while now and it is making a difference. I have helped other people move and have acquired definite opinions on how I don’t want to do it when it’s my turn. And taking time also gives us opportunity to think and pray for the best path to take, even if it should turn out to be staying where we are. We aren’t telling God how to answer us, we’re asking for our heart’s desire. We don’t ask to see all the way to the end of this process – just the next step, one at a time.
We do believe in having some sort of plan though, and you have been hearing hints of it in my writing. We are quite close to putting our house on the market. I am looking at the contents of each room, selling some things, packing others, giving some things away. When I finish this, the house will be ready for staging and showing. We will put our boxes and furniture in storage and if the husband can finally say goodbye to the job, we will go…. somewhere.
We want to go someplace where we are useful, because we still feel we are useful. (I am aware that will also change and we will have need of help ourselves.) I can’t say that the people we would want to live near really need us, because they are getting along just fine now. I can say that I think we could add benefit to their lives by being physically closer to any of them. The most probable scenario would be to store our things in North Carolina, until we find a suitable house there. We would likely delay buying for a while, living instead with Mom in Wisconsin, enabling her to have our help and company at home if she desires. Her move to an assisted living facility for the winter has given us more time to prepare the husband’s mind – he has mixed feelings about extricating himself from his work. That is understandable.
There, you have it. There are no deadlines or dates attached to anything yet, but unless God stops us, you can know that is where we are headed. Moving is not easy. There are so many emotions involved, so many memories tied to this place of thirty years. The oneacrewoods has been God’s blessing to me personally, a hideout for a country girl trying to live an urban life. But I am ready to consider the next home, with anticipation.