Reminiscing and Punding

In a previous post I wrote about finding a little card entitled “The Art of Marriage” in Cheryl’s purse. As I unwrapped and unfolded the little package in her purse I was very aware of the fact that it was none of my business what she kept in her purse nor why she kept those things in there. Nevertheless, faced with various requests for help, like, I can’t find my black comb or I have lost my glasses, I try my best to keep up with how objects and things are pared up, associated together in her newly confused mind.

I am guilty of looking around through her stuff to help her keep track of her stuff. I have no other interest in her stuff. That is my defense when I am caught. So far so good. I have not been caught yet. She thinks I am really good at finding things. If you know who would think to look in the freezer for a comb or used Kleenex for example, then you know someone who is care giver to some person with some variety of dementia.

Punding is a term used by the Norwegians or Swedes to describe the activity of mindlessly sorting or aligning objects, often random objects, in a fashion known only to the person doing this. I believe the term means “blockhead” Swedish.

In Cheryl’s case this behavior manifests as organization of articles and documents in preparation for a meeting or some other activity. She ran the early computer tech program at Nativity School when our children went there. Having no educational background caused her to be constantly looking to others who did, attending meetings and reading articles. She was excellent I am sure simply because she was aware of her weaknesses. She also helped her mother send cards and notes to family and friends to thank or take note of various occasions such as birthdays, holidays, anniversaries, graduations or merely an invitation to dinner. To this last Cheryl has kept many thank you notes from her mom for Sunday dinners over the years.

She gets these out and sorts, re-reads, thinks about her mom and shows them to me as though she received it in the mail today. Often she will say, I got this card from Mom. Or I got this Christmas card from (whomever).

She collects these in various clumps and collections. Some are in manila envelops. Some are in small gift bags. Some are collected in stacks with a rubber band around them. Some are in stacks held together by spring clips. Sometimes they may make some sense to me, sometimes they make no sense. No chronology. The collections can be totally random.

As she looks at the cards she reminisces about the old times. I used to point out that she was looking at a five year old Christmas card. I find that unimportant to do now. The activity is totally harmless. Late in the evening she is amenable to “I can help you with that tomorrow. Let’s go to bed and rest so we are more alert to work on that.” And we trundle off to bed tired from another day.

Carpe Diem.

Deep Brain Stimulation — The Magic Trick – Life with Parkinson’s

“Know what you want to know.” — Marion Lewenstein There you have it – the distillation of my Stanford education in six little words. Save all that expensive tuition and meditate on this quote instead.. Marion Lewenstein was my journalism instructor at Stanford- I had the pleasure of visiting her during a reunion in 2017. […]

Deep Brain Stimulation — The Magic Trick – Life with Parkinson’s

Occasionally this comes up in conversation at our support group and elsewhere. This link here is to a fellow blogger who is evaluating the pros and cons for herself.

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.

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

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.

Lunch with Rosie

Cheryl went to high school with Rosie. Rosie went on to become a Sister of St. Francis. Cheryl went to the prom with me and four years later we married.

Yesterday after many scheduling issues we hooked up for lunch. Cheryl was moving very slow that afternoon. Rosie moved very slow with her and very gently held her arm into the restaurant and over to the table. In conversation, Rosie, the quiet calm and gentle person that she is with her own health issues, gently took Cheryl down a memory lane of remembrances from their high school years to their current time.

I slowed a bit and observed. Slow and gentle were Rosie’s movements, her companionship, her conversation. I learned something.

When we got home Cheryl rested for a bit.

I realized that Cheryl needs to go at her own pace. I always knew that she did but I did not always observe that pace or make myself slow to her pace. Cheryl’s pace is principally Parkinson slow with occasion spurts of Parkinson fidget and sprinkled with Parkinson frantic and a little normal motion and conversation.

She did not seem really very tired or ready to go to bed at what I think of as her normal ordinary bed time of 9:30 – 10 PM. I tried to exercise what I had observed earlier in the day and suggested we play a card game or work a puzzle for a while. She said let’s play Uno. We played with half the deck. She shuffled the cards and asked, Does everyone get seven? I said yes and she did not deal any extra players. Uno for those who do not know has a simple theme. Follow the color or follow the number. She could do that for about an hour or so. She began to notice on her own when she could not tell the difference between red and green. She declared herself tired about 11:30 PM and we got ready for bed. She slept soundly for several hours — all at her own pace.

Rosie taught me something. Let Cheryl set the pace. And if she is not around, think about letting God set the pace. Life is peaceful at Godspeed. Life at warp-speed requires quick reactions and having your shields up at all times.

Carpe Diem.

As We Get Older

As we get older and this goofy damnable disease takes more from her I find that is more important to find those gems of experience and good times.

I did not realize how important that is to me and to Cheryl. Today was a pretty good day. I expected it to not be so. Cheryl slept little overnight.

Ordinarily when that happens she is tired and lethargic the next day or maybe that is just me. Today she got up and had some breakfast. She took a shower with no help from me. We went to exercise class.

I made dinner that evening. I made a Betty Crocker noodle thing that I had not done before. We had our neighbor Jane over to eat with us. Both Cheryl and Jane pronounced the recipe good, so, I will make it again.

At exercise class we were reminded that this evening the Parkinson Community Fitness is having a Beach Party theme party that evening. So after dinner and Jane returning to her condo, I reminded Cheryl of that and asked if she wanted to go. She said yes if it was not too late. It was not so we went.

At first she seemed iffy as the seven o’clock meds shook her well being for a bit but she came out of it okay and had a good time. As you can she by the picture, she had her smile on. We both had a good time and we even got to dance for a bit. (It was more like a sway. :-)) — Thanks to another Jane at PCF we have these great pictures on our Frameo electronic picture frame.

Cheryl and Paul, 2022

In both of these pictures, she has her smile on. Carpe Diem.

Rock Solid

This morning she dressed the bed. I went back to the bedroom after she announced that she intended to get cleaned up and get ready for exercise class. The bed was put together already. I was overwhelmed with emotion. She had slept solid most of the night.

My heart leapt for joy. She has not made the bed for a couple of years. Long enough ago that I have forgotten when the last time it was that she made the bed.

We had pancakes for breakfast but she wanted donuts. (Smiley face).

At about 4am after a trip to the bathroom she asked me, when is church? Three hours later she asked me if I had gotten donuts for breakfast. There is an association in her of church and donuts.

Previous donuts

Maybe I will stop and pick up some donuts from somewhere today so that we have them tomorrow morning.

Every day is a new day.

Carpe Diem.

An Icy Day in February

The puzzle is completed. Hallelujah! Kill the fatted calf. The Christmas 2017 puzzle is complete. So, now the question is what to do with it? I suggested that she break it into the tiny little pieces she started with and pass them on to her sister Nancy. She is still thinking about it but that is probably what will happen.

Who knows maybe this is a new hobby. It certainly is an occupation once it starts. Cheryl seemed very content while this whole process was happening. Cindy is an enthusiastic cheerleader and champion during the activity. I was not gone for a long time but when I came home they were puzzling away.

I started dinner. I had been out in the rain that we had ahead of the icy wet snowy crap that came today. While out I decided it was a good day for stuff soup.

Stuff soup:

  • 2 small onions chopped
  • several (5) carrots pealed and chopped
  • several (4) small potatoes pealed and quartered
  • several (5) stalks of celery chopped
  • a head of broccoli chopped – the stems are good in soup the flowers tend to disintegrate like peas.
  • the end of the bag of frozen corn (maybe ½ C.)
  • half a cup or so of frozen peas.
  • ½ lb. of mystery beef – bought out of the get rid of it soon shelf at IGA – chopped int ½ in. cubes
  • some whole wheat pasta for health reasons.

In a dutch oven put about 2 tablespoons of olive oil and dump in the onions. Stir them when they start to sizzle. Rinse the carrots and celery and when you are satisfied with the onions, let them brown a bit, dump in the beef. Brown the beef for awhile and enjoy the aroma. When the kitchen smells like a good diner, dump in the celery and carrots. Stir it up for a bit and put the lid on and give it a few minutes. This is a good time for a little salt and pepper to taste.

When you are ready dump in a box (32 oz.) of whatever broth you like. I used beef broth here. Bring it all to a boil and start the oven set to 300F.

Dump in the frozen peas, corn and chop the broccoli into small pieces. When it starts to boil again, dump in the broccoli and put the lid back on and stick in the oven for 30 minutes or so.

Add the healthy pasta at the end of 30 minutes and set the timer for 10 minutes more. Set the table and find some rye bread to go with everything. Put out the butter, bowls, silverware, etc.

Sit down in the kitchen to eat so that the puzzle can be viewed from afar. It is better to leave the dining table undisturbed. Speak to the small children attempting to mess with the puzzle even if you cannot see them.

Maybe I should look for the special table to build the puzzle on. I kind of liked having dinner at the dining table. We sat closer to the little apparition girls and I could chase them away as necessary while eating. The little girls seem to show up a lot at dinner time.

Everyone is smiles when the puzzle gets finished.

Carpe Diem.