She was Angry and Grumpy and Normal and Confused

And then not. It is a puzzling disease.  It is odd and frustrating.  It is Thursday. It is a exercise class day. I had no other expectations beyond that. The morning was kinda normal.  I got up at 7AM for meds and she laid back down for a bit. We got up at 8AM. Overnight she had been angry with me for helping her to the bathroom. She seemed like she was dreaming. She forgot where the bathroom is located and became angry when I opened the doors to show her. She shifted into what I call “little kid” mode and said, “you don’t know everything. I’m going to bed.” (Her hesitant PD motion is gone during these episodes.) She has had other verbal dreams like this before. She does not remember them in the morning.

Breakfast was her usual Life cereal with dried cherries and milk. Orange juice is the drink of choice. She perked up a bit and I watched the news. The morning news is getting a bit repetitive; first the covid report, then the Afghanistan debacle and then the general disaster report, fire, earthquakes etc. Life sucks all over the world. The boys in Gaza were not throwing stones and other pieces of concrete at the Israelis across the fence. The Israelis were passing out booster shots instead. But Cheryl seemed to be doing well this morning.

Off into her office she goes to check email and see if there is any news. She checked for text messages on the way there. No emergency emails were found. This could indeed be a good day.

Close to time for her second dose of meds she reported being very tired. Indeed this is a normal wearing off of the medication. I suggested that she should take her ten o’clock and then lay down for a bit. After her 10AM meds she is up and down a lot. It takes some time for the medication to bring relief. She often reports a tightness or congestion in her chest. A coughing jag may occur. She might get up and wander the house with her limping hesitant parkie motion. I asked if she needed help with anything. She said no. I told her that her class was going to happen in a couple hours and she should start preparing for that and put on her clothes, put in her earrings and so on.

She decided I was being mean and I should leave her alone. Perhaps I was pushing too much for her to get dressed.


As a caregiver it saddens me sometimes that as I try to steer her towards activities that I am certain will help her feel better she is resistant. I admit to pushing sometimes to get her off the tired and feeling not up to it fence. She gives me her wrath in return. It would be easier to give in and accept her malaise. The relief is only short lived, as I have done that before and she wanders around in a funk for hours.


We discussed going to her exercise class at length. She told me that she knows it helps her but she was really tired at that moment. I suspect it is hard for her some days to summon up the courage, strength and ambition to go forward with this tiring disease. Her sister Janice often complained of being incredibly tired constantly. In Jan’s case she slept mostly in a lounge chair. Cheryl seems unable to nap in a lounge chair.

I asked if she wanted a little Coca-Cola and chips or a snack of some sort. Yes. What kind of chips do we have? – was her reply. Only potato chips, I think you ate all the Sun chips, I told her. Another thing to keep track of is her appetite and desire for certain foods. Up until about three years ago Cheryl always had some peppermints with her. It was basically the only kind of candy that she would eat. Today she never wants them but I have butterscotch blobs in the car because I like them. She likes them also.

She went to class. I noticed that she seems to be coming out of her funk. She had conversation with several of her fellow classmates on the way in. PCF is such a warm and welcoming place. As she came in and talked to people she perked up. As we were driving over to PCF she asked where should we go for lunch. Then she asked, “How about Skyline for lunch?” We have not been there for several weeks but it is a favorite of hers. (One cheese coney – no onions. Sinful.) We’ll see was what I thought at the time. We ate lunch at the Skyline on Plainfield Rd. (One cheese coney – no onions. Still sinful. I had a 5-way.)

We shopped at the IGA to buy groceries on the way home from Skyline.

We had corn on the cob and hamburgers for dinner.

After dinner she went to work on the labels for birthday cards. She was confused about printing labels when I checked on her but she was working on organizing things.

She came into my office at about 9PM and asked me to give her a ride home. She mumbled something like, “Mom has left so I’ll need a ride home.” I helped take her bedtime meds. I explained that we were already home and I would help her with printing the labels for the birthday cards tomorrow.

Oh well tomorrow is my birthday.

Carpe Thursday Diem!

Do You Have Sons?

It was an totally off the wall question from her as we finished up the waffles I made for breakfast.  (I have finally succeeded at chocolate chip waffles without screwing up the waffle iron.)  She looked at me sincerely with a forkful of waffle and asked me, do you have sons?  I replied, yes we have two sons.  We have two sons?, she repeated.  Do you know who I am?, I asked her.  No I am not sure, she said.

This morning she is not sure who I am.  She accepts the fact that I am here with her.  She does not question why.  I am at a loss for words and ideas as to how to return her to now.

This morning she is not sure where she is either.  This inability to understand where she lives usually aligns with her inability to know who I am.  It seems to present after a night of poor sleep.  Early this morning she awakened at 1:30 AM or so and became anxious about having something to eat and taking her pills.  She was certain I was keeping her medication from her no matter how many times I explained that it was too early.

Where are we going to church?  After a few minutes of conversation about sons  and their ages, she asked me this question.  I replied that we would be going to Nativity at about 4PM this afternoon which led to a discussion about what day this is and what is going on tomorrow.   I thought she was back.

And then she asked me, is your wife going?  I did not immediately respond and she asked will you introduce me?  This group does not talk much about family.  I would like to know more about this family.  (smiley face)  I thought to myself, this could be a long day of confusion.

As I write this I am listening to her talk to my brother-in-law in Florida.  Cheryl inadvertently dialed him while looking at other stuff on her phone.  She stopped the call but Bill called back to ask if something was wrong.  There was but he was not able to tell from his far away position in Florida.  They chatted for awhile and I thought she was slowly coming back to reality.  Alas, she was not.  After she terminated the connection she asked me where was this place we had spent the day.  This is where we live, I told her.  This is our home.

Confusion about going to church and time to be up seems a common theme of the overnight early morning discussions.  This morning after the discussion about medication schedule and when the next dose was due she reported that she had a queasy stomach.  She wanted something to eat. I got her some cereal and orange juice.  As she spied the pills for 7AM the conversation returned to – I should be taking medicine now. She can be remarkably confrontational and difficult in her early morning confusion. I moved the meds to my office. She ate a little cereal and juice. She eventually announced that she could eat no more cereal.

We sat down in living room for a while and I coaxed her back to bed. Queasy stomach was still part of the conversation. She gobbled a couple Tums. She was unable to sleep without her bucket. She curled up with her bucket angry with me and eventually fell asleep. So did I. I have no doubt that her stomach was queasy although that was a new description.

On our visit to the neurology group did produce a new prescription to help with memory issues which relates to cognition and a whole host of other issues that tumble down from that. The new thing is Rivastigmine which is supposed to help. So far after half dozen doses, the jury is still out. I have been meticulous at making sure that she eats food when she takes this medicine. It can cause nausea.

She is anxious about fund raising for the Sunflower Revolution. She very much wants to raise more money than last year. Even as I explain that she does not have to provide the money, she worries that the word will not get out. My daughter and I have taken over the marketing of this for her.

Carpe Diem this has been a long day.

Visit with Friends

We had a nice long visit with friends yesterday.

Life long friends.

High school friends — Paul and I met in high school. We met probably in homeroom of our freshman year. My memory is vague on that account. Nevertheless we spent a great deal of time together in class. His surname was one letter off of mine, so often we were seated side by side in the back of class. Occasionally we were seated so that I was behind him in class and in one instance with a teacher whose last name also began with W, we were side by side in the front row. Teachers like alphabetical.

Paul was always nearby. I could touch him if I needed to do that. Sitting behind him in class was a plus. I was tall and grew taller in high school. He was taller than me throughout our high school years. In that one class I could hide if I wanted. It did not last long.

Purcell High School

We were not competitive in high school just good friends. It is rare that a friendship develops and remains throughout two lives in which being apart is as though it was not when those friends meet. Their meeting may be often or seldom but when they meet once more it is as though no separation happened. Our friendship is like that.

Through life our worlds separated and re-connected in a celestial mystical dance. We went to different universities. We got married. Magically our wives like each other. Raised families. Followed our own life paths. Attended our kids marriages. And as the families grew and spread out, we met up every few years to vacation together.

Cheryl’s reaction to an adjustment in her Parkinson’s medication destroyed our last attempt to vacation together. The disease is adding an element of confusion, hallucination and dementia as it progresses within her.

In the fall of 2019 we successfully made a trip to Florida by car to visit with family. After the pandemonium of COVID, I hope to make the trip north to visit Paul and Cathy. Cheryl occasionally talks about that and before I get too old, I suppose we should try.

With wonderful friends we had a wonderful, peaceful visit yesterday. We had long conversations about totally random topics that included children, grand children, the stock market, parents, food, diets and onward. Thinking about it now after the fact, I do not recall each individual topic. Our conversation merely flowed from one thing to the next. Occasionally it stopped. We were comfortable with listening to the cicadas. It was a pleasant afternoon and Cheryl had a peaceful sleep filled night afterward.

There are no cicadas in Minnesota.

Carpe Diem.

Different Interpretations

This cartoon is a double entendre. Double entendre is open for misinterpretation. Usually one interpretation is risque or at least rude in some fashion. One interpretation may be metaphorically a dog whistle. Clear communication uses none of these but as the cartoon below describes how jokes employ all of these techniques. And from Shakespeare, “Jesters do oft prove prophets,” in King Lear.

Language is nuanced. Idioms and usage depend upon the speaker’s and listener’s background and environment. As Parkinson’s disease develops it often robs the brain of the ability to detect the nuance and subtly of language and more succinctly the difference between truth and tease.

When people do not say what they mean, the listener is left with an unwanted task of interpretation and analysis without complete information. In conversation the listener may respond with, “To be clear… (the uncertainty)?” in order to understand the speaker. This is a fair question. It is not a challenge. It is a clarification. Questions left unsaid answered only by the listener may not be the intended thought of the speaker.

Direct speech can be interpreted as rude. Many speakers talk around a thought in hopes the the listener will hear that which was left unsaid and be less offended. Direct speech can be interpreted as confrontational but direct speech cuts through the Parkinson’s fog. Parkinson’s is not subtle.

Parkinson’s sucks.

Love Stories Make Me Cry

I don’t know why that is. They just do. They are not sad but some are. Life long love is precious. Some say that it is rare. Perhaps what makes me tear up is the fact that many people do not find love that lasts for a lifetime. Perhaps an inner joy in me appears when I discover a story like ours. Perhaps my tears are tears of joy for, I cry at weddings and births too.

In the Fall/Winter Miamian (The magazine of Miami University) is a wonderful love story. Many Miami University grads met their life partners there while in school Oxford, Ohio. I imagine this is true of many university campuses but at Miami it is legendary. The story is about two people who met at a basketball game but did not know each other. They were set up by friends and began to date. During this time she noted that they could get a one hour PE credit for taking a social dance class. He did not want to do that but she insisted with, “If you’re going to date me, we will do this.” Later as they found out that they were in different sections of the class, she wanted to drop the class because it was not what she wanted it to be. He responded with, “If you’re going to date me, you are going to take this class.” The woman teaching the class allowed them to take their final exam together. It was a waltz. It was a metaphor for the rest of their lives.

Today she is suffering with Alzheimer’s disease. And he is her caregiver. As time progressed she needed more care than he was capable. As he was moving her into a facility to care for her better the pandemic struck the U.S. The facility was about to lock the doors to curtail the spread of the virus to their residents. Could he move in with her? Yes. He has moved in with her to the assisted living facility to be with her throughout this Covid-19 pandemic. They locked the doors to the facility to stop the spread. True love.

I wonder about our future with Parkinson’s disease. As time progresses I notice that my life partner struggles with many of the simple organizational tasks associated with day to day living. I have taken over many of these, most of which fall into the category of chores – laundry, cleaning, cooking and the like. I wonder if it might have been better for me to not assume some of these tasks. It is not that I mind doing them but I have taken many of the daily routine tasks away from Cheryl and she has little of the daily routine chores to help her organize time during the day.

As it is, I am able to keep up with daily living chores. But I cannot resist looking towards the future and wondering about what is next.

In addition to being a movement disorder, Parkinson’s seems to destroy in some people the ability to perform parallel tasks. Cheryl has filled her days that I have removed the chores from with a task that her mother used to perform for the family. Elaine used to keep track of and send an appropriate card to children and couples on the recognition of their birthdays and anniversaries. Intermingled with this was additional well wishes for illness, deaths and other life events. It is somewhat unique in her extended family as I have noticed no one else doing this. Facebook has the unintended consequence of reducing within a family notes, cards, phone calls and other intimate connections. (Perhaps a good new year resolution is to get off Facebook and onto the phone or email or snail mail to reconnect.)

I have digressed. The simple act of keeping an address list up-to-date and maintaining a calendar with birthdays, anniversaries, deaths or other dates is confusing to one who is loosing her ability to remember which pocket of her purse holds the chap stick she put in there moments before. I help her and have helped her a bit around the fringes but I am resistant to take over this task in its entirety. It is something she wants to do. It seems to be something she likes to do. It is something that frustrates her greatly upon occasion. It is something that derails her objective when she discovers an incorrect address or thinks she has discovered an incorrect address because she has remembered an address from “auld lang syne”. When this happens one must stop and wait for the correct address to appear from the email inbox – or text message stream which is a variety of the same thing.

This is merely an example of a deteriorating brain and I wonder if I will be able to keep up with her needs into the future. The husband of the couple interviewed in the Miamian recognized that he was unable to tend to her needs completely and decided assisted living was the answer. His wife has Alzheimer’s which is by my perception much more debilitating than the slow progression of Parkinson’s disease dementia but will I recognize when I am unable to take care of her on my own?

Our love is here to stay. Their love is also. I will always cry when I find a love story of two people devoted to each other for life.

Parkinson’s disease sucks. I hope I can recognize where it is sucking us toward.

Do … Resolutions for 2021

Do all you can while you can. Life is a one time deal.

Carpe Diem — longing for the old days is wasteful. While it is fun to reminisce about previous experiences today is here. Stay tuned into your surroundings.

This Post card from Bishop John H. Vincent

I wish to resolve to do this care giving thing better:

Goal:

my attitude to be positive, my hands to be gentle when administering help and my heart to be full of compassion. [What she sees, hears, feels and tastes is real to her no matter what time of day.]

Plan:

Understanding and education of symptoms and what can cause those symptoms. Keep educating myself and make no assumptions about cause and effect. [This can help me to understand that I do not know all the answers, that only she knows how and what she is feeling.]

Action:

Be supportive when necessary, explain if asked, and lead if called upon. [It will be tempting to know the right answer but to find the patience and empathy to determine what is called for at any particular time is wisdom to be sought after.]


Some Specifics:

When walking with Cheryl, stroll. She moves slower than she once did.

Do not tune out the surrounding world and merely wait for the next event. Seize down time for exercise, education and entertainment but do not regard the environment as an intrusion of self.

Be more upbeat! (That is not specific. (smiley face here)) Look for the gold in every day. Leave the tarnish for yesterday.

Parkinson’s still sucks. Let’s make the best of it in 2021.

Some More Conversation

This morning she says to me, “Are we ever going home?” … in an angry tone.

It is kind of an odd conversation but more common conversation to have in the morning. Because she seems to be in a different place in her head, even though she can see all of her possessions and her earrings and her clothes et cetera nearby.

It’s just really, really interesting and disturbing. I am unsure of how to react sometimes and what to do about it. This morning I did pretty much nothing and told her that we were in fact home. This is where we slept last night.

Then I asked her if she needed my help find a shirt or anything like that to put on and that seemed to deflect her mind. AHA – so maybe in the future. What I will do is look for those opportunities to answer her question and then move on to a new topic because she doesn’t seem to get lost when I change direction. She doesn’t insist on talking about where we live and why we are there and etc. Poof! She looks for a shirt.

In the past few weeks we have had conversations about dreams, Jan and furniture. She has a different reality – which is probably the wrong way to say it – sometimes in the evening, sometimes in the morning. It is difficult for me to ignore the fact that she perceives something different than I do. My natural tendency is to correct her perception. (What can I say – I am male. It is built into my jeans. Yep – purposeful use of the homonym.)

I guess we are creeping toward the non-benign form of Parkinson’s disease. Sadly.

I have told her many times that I will stay close by to help guide. She seems to understand for now.

Some days it is hard to find any humor. We use to tease each other. Now she does not understand and thinks I am being mean.

The Importance of Being Confrontational

We had dinner with friends last night. There was much alcohol. There is little to be said about that except that alcohol lowers inhibitions. Does it enable conversation? Maybe not but it does seem to promote confrontation.

Her candidate did not win. That became apparent early, right after the second bourbon. And as a retired junior college educator she was irritated with the state of education in a Covid-19 world. Life sucks but then there is bourbon so its not all bad.

But eventually after the acceptable amount of self-medication, it came out that she is worried about socialism for her grandchildren. I thought about asking what the term socialism meant to her but I quickly decided that would be needlessly confrontational or might seem so to her. With that in mind, I kept my mouth shut.

Socialism is scary thing for a capitalist. Because, from the dictionary – socialism is a political philosophy and economic system based on the collective ownership and control of the means of production; as well as the political and economic theories, ideologies and movements that aim to establish a socialist system. It seems a hard system to make work with out a lot of true egalitarian democratic decision making. My wife and I often do not agree on which restaurant to go to in a spur-of -the-moment decision to eat out. I find it hard to believe that the 10,000 people or so that it takes to run an oil production company for example could put their heads together to decide how much one should pay for a gallon of 87 octane gasoline that came out of their production line. It seems not impossible but certainly impractical. It also seems unlikely to me that we could ever get socialism ala China or Russia to work in this country of ours. Too many gun-toting NIMBY folks out there to allow that to happen.

There appear to be many a broad brush with which to paint the political landscape and in a brain storming session (committee meetings and hearings) various factions shout at one another without conclusion. The color of Socialism does not seem to stick to us.

What is the purpose of government? Any government’s job is to provide for the common good. If the populous is good and kind and empathetic to one another there is little need of a government.

A home owners association (HOA) is a microcosm of government. It is a truly democratic organization for managing the money and facilities for the common good of all. Hard stands appear when groups of people talk about money. HOA expense items are the same each year. Those service items increase in cost. The basic items are: utilities, waste removal, alarm system, administration, insurance, landscape and building maintenance. Unknowns are saving for a rainy day and disaster relief. It is prudent to budget for all of these. Home owners associations are socialist in most respects. Everyone pools their resources for the common good. Everyone in the HOA has access to all common elements, such as, parking areas, lawns and if such items exist, pools and recreational facilities. Nevertheless, few participants readily volunteer to pay more from year to year for the same. A small HOA can meet in person to transact business but even then not all want to participate.

Village and city governments quickly be come too large to transact business in a democratic fashion. We are used to selecting representatives by vote to exercise and express our interests for us. We accept their decisions as our own. If the populous gets dissatisfied they can vote them out.

Some confrontation is good for discussion. It breaks folks out of their own biases and ideas to understand the side of the discussion they did not before. There are at least two sides to every issue. Many times there are three or more.

Twelve sides

Looking at all sides of an issue or least as many sides as practical before making a decision takes patience and understanding. Passionate debate is useful.

So what does any of that have to with socialism? Nothing. But it points out a flaw in execution. Is there such a thing as representative socialism? There is representative democracy. The U.S. is one. Is there such a thing as representative capitalism?

Perhaps there is a middle ground. What is the purpose of government? In all of our dissension, is it possible to find a common ground? Something that allows capitalism to flourish but protects the rights of the little guy? Something that allows the business community to flourish but provides a safety net for those who cannot compete in an unfettered market?

Unintended consequences compete for partisan attention. The swamp is real. It is populated by asses and elephants. There is not room for socialist asses or elephants.

Everyone stay calm. Read about Sisyphus.