Unsolicited Advice

Oftentimes my immediate reaction to unsolicited advice is to ignore it because I assume that the advisor has their heart in the right place. Pushy people can insist that I’m doing it wrong but it is possible to listen past this and hunt for the useful nuggets of information.

Today Jane apologized for jumping up to find Cheryl a different cup to put her soft drink into at the pizza store last Tuesday. It was both unsolicited and surprising. I ignored it and when she came back with a coffee mug I poured part of Cheryl’s drink into it. It was a good solution and Jane’s apology and later her admonishment when I said that it was unnecessary reminded me that I am not the only solver of problems. Jane’s background is special education with kids that have special needs and although Cheryl is not on of those, some of the same rules apply.

For quite some time now I have been merely moving Cheryl’s giant plastic glass of soft drink away from any gyrations that occur with her hands as she engages in conversation. It never occurred to me to merely request a smaller additional glass to put her coke in. Something that was easier to deal with. AHA (dammit I missed that one.)

Carpe Diem.

The Caregiver Helpbook (3rd Edition)

Subtitled: Powerful Tools for Caregivers

So what can the Care Partner of The Year 2021 do with all of this wonderful knowledge? In an inadvertent fluke of fate and its fickle finger Patty send me an email with the information about a Caregiver’s Class put on by Catholic Charities of Southwestern Ohio. I am all for being as educated as I can about how to take care of Cheryl better by taking care of myself.

Being an engineer and amateur scientist I thirst for knowledge. That is corny but true. The problem with that statement overall is that there is no complete solution to Parkinson’s with dementia added. There is not even a partial solution. Cheryl’s sister hopes for a cure. I do not hold that same hope. That being said, the situation is not hopeless. 

I bought a book called “Dementia Reimagined”. I was hoping for a cookbook style answer manual. It was not that at all. It is an incredibly tiring tome about public policy and where it fell into the dumper over the years. Engineers are always hoping for a cookbook for their situation. When this happens, do this. Alas there is no such manual for life situations as defeating as PD with dementia.

But back to the help-book, It seems as though many of the ideas I have discovered on my own or others have told me about I merely have been ignoring them. Early in the book it talks about developing goals and achieving them. These are not care-giving goals. These are goals that allow the care-giver some relief.

Initial focus is on setting a goal or several goals and development of a plan to achieve it or them. The goals discussed are relaxing activities for the care giver. So, it is something you want to do. It is also something that is reachable and realistic. Something you can accomplish in the near term.

  • What do you want to do?
  • How much of it do you want to do? (more specifics)
  • When do you want to do it? (timing helps to plan)
  • How often do you want to do it? (repetitive relaxing activity)

This same technique can be used to plan any sort of activity, of course, but the book’s focus is care partnering and care partner health. Additionally this portion of the text asks the maker of promises and planning to predict the probability of achieving your activity. There’s an implied deep need here. Something that you may really feel like you want to do but have little chance of achieving. A life lesson in the manner of understanding that not all wants are achievable. (How driven are you to get to your goals)

The next portion of the focuses effective communication and recognizing emotional and stressful situations. Two forms of communication discussed are assertive and aikido. A comparison of these styles of communication is Assertive:”stand tall” vs. Aikido:”standing with” This portion of the book takes me back to my educational psychology classes and discussions about defusing confrontational situations.

  • ASSERTIVE
  • setting limits
  • asking for help
  • advocating for another
  • making difficult decisions
  • dealing with difficult styles of communication
  • AIKIDO
  • defuse emotional situations
  • help others feel understood
  • reduce anger
  • balance emotions to allow dealing with others

As I go through the rest of the book I will report anything else of interest to me.

Carpe Diem

So many times in the evening

She asks me if we are staying here tonight. It is a repetitive theme in her thinking and confusion. Not knowing any better I try to answer her honestly and without any teasing (which she does not understand anyway). Looking at my old notebooks and blog posts it seems that this particular confusion and some others, who I am, for example, have a cyclic appearance.

That was last night. This morning she wants to pack a suitcase for college. The idea that she needs to get ready to go off to college is totally new. The college she wants to go to happens to be the one I am a graduate of and our grandson has been accepted into for the Fall semester. These facts are probably all tumbled up in her head and sort of explain her confusion.

Another interesting nuance is conversing with me as though I am an acquaintance, someone she has not spoken with for some time. We are catching up. We spent most the of the day talking in the third person as though acquaintances. It was a warm late winter early spring sunny day so we took a walk in the park. We talked about many things. We talked about the weather of course. We talked about how far you used to be able to see across the little creek we were walking next to. On the other side of the creek is a concrete and asphalt reclamation business with mountains of paving to crush and recycle. It once was a smaller pile of refuse.

We talked about children. She told me about hers and asked me about mine. She was amazed and intrigued by the fact that our children had the same names. It seemed that the only difference was that her children were in their teens and twenties and my children were middle aged. (smiley face here) It was unimportant to her that these teenagers had children which were her grand children. These conversations were hard to follow but I was able to ask questions and find out more like any good friend would. Most of the time I was able to keep the tears out of my eyes as we created a memory of a good day for her.

She suddenly switched topics and talked about what to do about Thanksgiving dinner. I gently pointed out that it was barely March and Thanksgiving day plans were several months away. Undaunted she replied that it would be here quicker than you think. There is a lot of truth to that last comment. I have noticed as I get older the year goes by quicker.

I promised to get right onto organization of who does what. I fired off a text message to our family text-party line and got positive responses from everyone. Our daughter volunteered to host.

Carpe Diem

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.