I Have to get the Article Written

With that thought she got up at 1:30-ish in the early morning. It has come to me that when her dreams become real, I have to just go with the flow. I tell myself that our experience has shown that this episode will last about two hours, so be patient and helpful during that time. Some might to this as a prayer but I think of it as description of what I need to do to help her get through this nuanced dream she is experiencing right now. (And Carpe The Damn Early Morning Diem. 🙂 ) I suggested that she should have something to eat and she would be more alert, her mind would work better while she was writing the article. She agreed with that and asked what we had.

I suggested cereal with a banana cut up on top and some o.j. She took her vitamins. Later after she decided a piece of coffee cake from yesterday morning would be good also, we discussed how she could get started. She looked at the two-day old paper on the kitchen table for I bit. Maybe she was thinking about what to write? She did not tell me.

I suggested we watch TV for a bit while her thoughts gelled. We watched a couple TV shows that were previously recorded. After a few minutes as was our previous experience she became tired again and we returned to bed at 3 am.

The alarm went off at 7 am and I fetched her morning meds and we returned to bed for a little longer as we usually do. Twenty to thirty minutes is usually enough for her to get moving. I fell asleep a little more soundly than ordinary.

I woke up and realized I could not hear her. I got up and put some clothes on. I searched the condo and could not find her anywhere inside. The front door was unlocked. This morning when she got up, she left the house.

Did the rapture happen? It scared me. It is my greatest fear, not the rapture, the fact that she had wandered off looking for something she could only see in her mind. Fortunately she was just outside the front door to our building and it was not raining.

Later as she was laying down to rest she told me, she was looking for anyone awake. She was scared that no one was here. She had decided to go look in the next building for anyone. She asked me if that woman who runs things here was around – whoever that may be. I left, “What are you thinking about?”, unsaid and suggested we go out and get some sun. Take a walk. Maybe we could have lunch.

I felt bad that I fell asleep again.

Carpe Diem.

Always Learning

One can always learn new things if you open your heart to the experience.

Recently we met with a dementia specialist. It was not intended on my part to be one on one but as it turned out it was. She had several key points to deescalate frustration and anger. Like many things that happen these days with Cheryl and me, I often forget which people and services I have investigated before. Theresa Youngstrom is a nurse and a dementia specialist. In a previous post I quoted these points from her website.

From Theresa’s website;

  • Always approach from the front.
  • Watch your body language and tone in addition to the words you use.
  • Smile and wait until they acknowledge your presence before touching them.
  • Validate their point when they are upset even if they are wrong.
  • Say you are sorry at the first sign of their frustration to keep situations at a minimum.

After we talked for a bit the other day, I realized that I had already learned a lot from her about deescalation of frustrating and angry situations.

I am sure there is more to learn.

Carpe Diem.

Why don’t you like me? — Standing up to Parkinson’s

The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!” To which LAJ responded… “I thought it was going to be about a caregiver who thought their husband didn’t like them anymore, […]

Why don’t you like me? — Standing up to Parkinson’s

As Sue thought, I thought this was going to be about the care giver. It is not. It broke my heart. I have watched Cheryl struggle with opening many things. And I heard Parkyboy talking in the background.

Carpe Diem.

That Last One

The previous post was self serving but I would like to have my old life back. I would like to have my young body back too. That is not going to happen anymore so wishful and wistful thoughts are not going to be helpful to looking ahead. Let me face forward and move on.

As hard as it is I want to try a new tactic. Much of my anxiety about Cheryl is fear for her failure and subsequent embarrassment. I project that on her. She is not concerned. She is talking about apple pie again. Today we bought more apples and she chopped them up to make an apple pie for Easter dinner.

Last night or perhaps the night before her confused head decided that she should call her sister Deb and chat her up about making an apple pie for the Easter gathering. As time moves on she seems more and more confused about what and when and who. I have explained that we are going to our daughter’s house for Easter dinner. Somehow that gets converted into Nancy and Jan and Deb.

Nevertheless I asked my daughter-in-law Mavis to come and help Cheryl finish the pie. She readily agreed.

I am hoping for a new experience and memory.

Carpe Diem.

Laments – I Want My Old Wife Back and Maybe Our Old Life Back

The one who I could tease a little. The person who when I would toss a teasing barb at her would toss it right back and then some. Fifty plus years of marriage let you do that to each other. We had some great times. We had a lot of fun times. We always wish that the kids will have as great a time and Cheryl and I had along the way. We were never rich financially but there was always enough to make it work out. We were and are rich spiritually, socially, romantically and personally. I suppose that is what makes her mental state so disturbing and frustrating to me in this part of our life.

I can go back and forth, staying present and grieving what is lost to us. As I think of these things and reminisce I think of the song, “As Time Goes By.” There is a British TV show of the same name with Judi Dench and Geoffrey Palmer. It was one of our favorites. We rarely sit for long enough to watch any TV show. Any plot line makes little sense to her so she loses interest and gets up to go organize her office. It is her form of something called punding which is a useless and senseless activity that many in her situation do.

Cheryl was the one who was super organized. She kept the check book. She paid the bills. She was hawkish about getting and keeping and filing receipts for groceries and gas and any other expenses. She preferred to pay cash for stuff. If you did not have the cash in your hand, you did not buy it. When the kids were small we went to the grocery once a month and filled the larder. When it was gone you had to wait for it to come around again. There were some exceptions of course for milk and eggs and bread but generally you had to wait. The kids learned to be frugal. They were allowed to pick their own special things for school lunch and they learned how to make it last. Even when the children moved out to have their own lives we still shopped mostly once a month.

Cheryl knew how to use a screwdriver and still does but somethings that were second nature to her are now befuddling. How to open and what to do with an email. She once put all the family information into an Access database to print addresses for birthday cards, Christmas cards and anniversary cards. She knew how to drive that simple data system. She was used to putting together other databases and accounting systems for the clients she and others had in their small computer services company. It is hard now for her to wake up Microsoft Word to write a letter these days.

She was the one who did most of the household chores. I do that now and I do not mind doing it but she would if she could stand up long enough to do the laundry, make the bed, cook dinner, bake a cake or pie or simply vacuum the carpet.

Both her motor control and mental agility are greatly diminished and she is aware of those diminished abilities and it frustrates her.

She is the one who loved to hike. My favorite memory of this is a ten mile hike we once took in March many years ago. We hiked around a lake in a Kentucky State park. It was an eight mile loop and a two mile hike to the trailhead and back. We surprised some badge earning boy scouts about five miles from no where as we sat for a bit to enjoy the view and soak up the unusually warm March sunshine that day. It is a wonderful memory. We slept well that night.

She wants her old self back too. Who wouldn’t? Her sister passed way in the pandemic. Her sister also had Parkinson’s disease. Jan had other things going on that kept her from surviving the Covid wave in 2020. She still sees and talks to Jan. Tonight she sent her a text message. Tonight she does not understand that Jan will not answer but I might be the one who is wrong about that. Jan might answer. She often does – answer Cheryl when Cheryl talks to her.

Cheryl saw Jan at the table when we sat down for dinner tonight. I have no doubt that Jan was real to her. We discussed it. She decided to send her sister a message.

It is a powerful thing to see how strongly she was certain Jan would answer. It was moving to me. She went into her office to partake in a zoom meeting with some friends. She gave me her phone to hold in case Jan would call back or return her text above. These things sometimes break my heart. I try to keep them inside.

There is still time for new memories. I am sure of that. None of us knows when we are leaving this Earth. The best thing we can do is look for the good things, look for the humor in today’s situation. It is, however, difficult on some days.

An update after I published this about an hour ago. She came back from her Zoom meeting and remarked that she had not been out this late for a while. She wondered aloud how she would get home. I smiled and said that is the magic of Zoom, you are home. I gave her a tour of the condo.

Carpe Diem.

Comedy and tragedy are roommates

– Gilbert Gottfried

A Different View

When engineers look for a solution to some dilemma, they often spend a lot of time observing the problem.

Many thoughts can arise. Many questions seek answering. But ultimately the dilemma is slowly broken down to component problems and individual solutions to small problems are sought out. An engineering education teaches this process. An engineering education does not teach solutions for Parkinson’s disease and related issues. Those are discovered along the way.

“There’s someone hanging upside down in the trees in back”, she told me. There is a scrub tree growing in the weedy lot behind our condo. It has a crotch near the ground and branches into to smaller trunks as it grows toward the light. The bark is a light color almost khaki in color. To Cheryl it looks like a kid standing on their head. Perception is off a bit and her creative brain describes a different interpretation.

In that moment she pushed me into interpreting things and objects differently. Are painters able to do this spontaneously? Are story tellers able to imagine a different reality? Are engineers stuck with what they see and touch with little imaginative creation? It intrigues me, the imagination and story telling part. I have often thought that if I could get into her head I could help but maybe I would merely be steering her toward my reality and away from hers.

There are many changes that I notice in her behavior. She can easily ramp up an anxiety about indigestion. It is not apparent to me what specific foods cause distress. Milk products and foods high in milk and sugar seem to give her a hard time. Tomato sauces and beef with a high fat content also distress her stomach. The engineer says figure that out and do not eat those. (Easy Peasey) The average time to relief is an hour to an hour and a half.

I have not discovered any silver lining in these stomach episodes. It is challenging to distract her from focusing on how her stomach feels although occasionally I can get her to sip lemon ginger tea which settles my stomach and does not add caffeine. After a severe episode she is typically awake much of the night. This happened last night.

After it became obvious to me that there was no way for her to calm down and sleep some more, we got up. I got her a bowl of cereal and some orange juice. She sat and worked the puzzles for a bit. I sat with her and worked on the crossword. I ate a banana and drank some lemon ginger tea. I asked her if she wanted to watch TV for a bit to see if she would get tired. She agreed and I played a couple of episodes of Steven Colbert. I can no longer sit up and watch his show so I record it for later. We watched a couple shows. Fortunately he was funny and Cheryl laughed here and there.

Today she is not in tip top shape of course and she fell over backwards in the kitchen. She is understandably fuzzy headed even though she slept until about 9 am. Maybe one day she will keep her hands empty when getting up from or down into a chair. But my wishes and encouragement which she interprets as anger go mostly unheeded.

On the drive to exercise class she asked if I slept well. I asked her if she remembers being up for a large part of the very early morning hours. She said no. The fact that she does not have a memory of being awake is not uncommon. I asked her if she specifically remembered watching Steven Colbert’s late show. She remembers that slightly. She apologized. She apologized for something that she has no control over and that frustrates me to no end.

There is no reason for her to apologize. It is not her causing undue commotion. Parkinson did it.

Watch out for kids hanging in the trees. Carpe Diem.

I AM ENOUGH — Care for Parkinson’s

Sometimes while caring for someone with a degenerative disease, we have occasion to doubt ourselves. To think we are the wrong person for the job. To think God must have made a mistake – surely someone else could do better. After all, we are so imperfect. Our loved one is not getting better. (We knew […]

I AM ENOUGH — Care for Parkinson’s

Whenever I am looking for alternative inspiration I read this blog.

Carpe Diem.

April Fool’s Day and other Thoughts

(image from Microsoft teams)

This morning after a remarkably good sleep, Cheryl got up and took a shower. She spent a lot of time getting cleaned up. She finally came into the kitchen looking for breakfast about 10am just as her alarm went off signalling the next dose. I asked her if she wanted cereal or something else to eat. She asked, Are there any donuts? (I have to start making some and experimenting with freezing them so they are readily available for breakfast.)

UDF donuts

I got donuts from the UDF store about a mile away. She likes their “kettle danish.” Two have been enough in times past so I purchased two. She is generous with food and offered the second on to me but I did not accept it.

I signed her up her April PCF classes and noticed the hands class teacher is back from Florida. She wants to go to “hands” class. This class has been on line while the instructor has been in Florida for several weeks. That style class really does not work for Cheryl.


Where does “April Fool” come from? I like this explanation I stole from India.com. It is not hard for me, a catholic, to believe some past pope guy started this nonsense.

It is believed that Pope Gregory XIII was the one to be blamed. He ruled the new calendar to start from January 1, instead of the previous celebration of the new year at the end of March or April 1. Though, the change in the annual calendar was brought into practice by France. But across Europe, the people continued to follow the Julian calendar. And those who failed to register the use of a new date and ended up celebrating New Year in April have been marked as ‘Fools’. Hence, a particular day for fools came into being.

india.com

Happy April 1st! Eat more donuts!

Carpe diem.

Last Night I Tried Something Different

Last night was one of those sleepless nights for Cheryl. I think I am learning when she will have a sleepless night or sleep fitfully overnight or sleep for a bit and then be awake for a couple hours. And the next day she has no memory being awake or thinks she slept soundly.

She went to bed a little early at nine but she had complained of being tired at eight while we were playing Uno. I got her bedtime meds and we played another round of cards. (I am losing this marathon game.) She insisted she was tired, so, I helped her find pajamas and opened the bed. I kissed her goodnight and read my book for a bit. Nine o’clock is too early for me to go to bed.

I went to bed at about eleven and slept for about an hour. At twenty minutes or so after midnight, she was up. I thought initially for a trip to the bathroom but she was up with conversational gibberish about work and school and children. I left her to put on clothes and I put on a sweat suit to go read some more and wait to see if she needed my help. (Her motion is good and she seems steady with no hint of Parkinson in the middle of the night.)

When she came out of the bedroom dressed for work, I got her some cereal and orange juice. She also ate a piece of coffee cake. She wanted to look for the morning paper and pointed out to her that the paper would not appear for several hours. She seemed to accept that and sat back down to re-read the Sunday paper. After breakfast we played a couple more rounds of Uno. In conversation before and during our card playing I was able to convince her that we had no appointments today. After a while she decided that she was very tired again and we went back to bed at about 2:30 am.

In previous episodes like this I admit to being Mr. Cranky-pants. Rosie showed me a different way to respond to her at night. We both fell asleep quickly and the LOUD AND ANNOYING alarm clock woke me at seven for her morning meds.

I would like to report that she is okay today and I am rested but I am not. I am a little tired but coffee helps. She is still a little confused but not any more so than normal lately.

She has a rash that appeared a couple days ago. This afternoon I made an appointment with our primary care physician to look at it. Hopefully it is nothing other than hives. I wish I knew what new thing is irritating her skin. She does not complain about it. (Update: Shingles. She has shingles. In some people it does not hurt. Damn. Another reason to not get old.)


In writing this little piece I googled “a different way” in the hunt of an image to use as a header picture. This hip-hop song popped up DJ Snake. I am not a consistent listener of hip-hop music but much of it is very good and has a happy beat. This video is very creative.


A Different Way – DJ Snake, Lauv


Could you believe I could be different?
I’ll be the difference, I’ll lift you high
And I understand your hesitation
Our reputation, it’s no surprise
So let me redefine you
And you can see the tide move
Just like tears in the eyes do
And when you’re feeling alone
Oh, baby, I’ll be right here
Between the sea and silence
So breathe easy my dear
You can find sunshine in the rain

I will come running when you call my name

Even a broken heart can beat again

Forget about the one who caused you pain

I swear I’ll love you in a different way

I know that love is so unforgiving

You’ve been a victim too many times

And I’ll be the thread, hold you together

I’ll be forever, will you be mine?

So let me redefine you

And you can see the tide move

Just like tears in the eyes do

And when you’re feeling alone

Oh, baby, I’ll be right here

Between the sea and silence

So breathe easy my dear

You can find sunshine in the rain

I will come running when you call my name

Even a broken heart can beat again

Forget about the one who caused you pain

I swear I’ll love you in a different way

Hey, hey, hey

I swear I’ll love you in a different way

Hey, hey, hey

I swear I’ll love you in a different way


Source: LyricFind

Songwriters: Edward Christopher Sheeran / Ilsey A Juber / Jonny Mcdaid / Lindy Robbins / Steve Mac / William Grigahcine

A Different Way lyrics © BMG Rights Management, Kobalt Music Publishing Ltd., Sony/ATV Music Publishing LLC, Spirit Music Group, Universal Music Publishing Group

There is always something to learn on the road of life.

Carpe Diem.