Where have Handwritten Notes Gone?

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I have saved a lot of old crap. Like most people I suppose have saved from the earlier part of their lives. Always with the intent of “doing something” with that letter, that picture, that article, that thing.

A few months ago I found a bag of that kind of stuff in my armoire crammed in the back of a bunch of other memorabilia. My diplomas and certificates and other ATTAboys are stuffed into the same place near socks and pajamas. My sister refers to these as little treasures.

In this particular bag left over from Waldenbooks (remember them?) I found a collection of old letters written by Cheryl to me in high school. These are not love letters. She is merely writing to tell me about her day. In the example I show here she has continued her letter on the next day, so, it is two letters.

Six pages of handwritten conversation as though I was there or at least on the telephone with her show several concepts of interest. The first thing to note is that her cursive when she was seventeen is written as though it is on lined paper even though there are no guidelines on the stationary. The second thing I noticed as I re-read her note was how she must have taken to heart practicing her craft in grade school and high school. The letter is dated and located and each page is numbered so the reader is not confused.

Not as much emphasis is placed on American standard cursive as it once was when we were children. Many of the MEME-ers on Meta believe this is appalling. I think it merely shows progress in education.

These days Parkinson has stolen her cursive from her as well as other things. Her ability to think in a straight line is gone. Cursive writing is just another item greatly diminished in our new life. And handwritten notes seem to be a thing of the past as we leap into the SMS message days. I have been chided by others for not responding to text messages rapidly. I notice that my smartphone service does not always provide a little chirp when a message appears and I am okay with that.

That last thought sent off to contemplate the idea that voice phone calls except from Mumbai are mostly none existent.

Carpe Diem.

A Never Ending Search

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Breakfast

In my never ending search for a good day for Cheryl, this morning I went to a little donut shop near us and bought a dozen from Maggie. I had not purchased donuts from Maggie for some time.

Linda was coming over today to sit with Cheryl. I was intending to ride my bike around Lunken and the Ohio river trail. I asked Linda what kind of donuts she liked last night. The chocolate iced ones are hers. I sent this picture to her in a text this morning. She appeared early.

The donuts were only hours old. Ron makes them overnight.

Donuts used to be $11 a dozen with coffee. Today they were $14 a dozen without coffee. That is twenty-seven per cent more for you math weenies out there. It might be more considering the coffee. Inflationary pressure has finally come to donuts. Gasoline prices are down. Donuts are up. Darn.

I went to ride my bike. When I had returned Natalie was almost finished cleaning our little condo.

I made chicken Parmesan for dinner. We went to a little ice cream shop for dessert.

It was another good day.

Carpe Diem.

Dressing the Bed

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When I make the bed in the morning, lots thoughts run through my mind.  I imagine that everyone does this or at least everyone who makes the bed consistently. I recognize that not everyone dresses the bed in the morning before work or other chores. These days it is often a necessity.

I once remarked to my sister-in-law as we traveled to our pizza Tuesday destination or some other dinner destination and she asked Cheryl, “Is this a good day?” that it is a good day. There is no extra laundry. As this disease moves on occasionally there is extra laundry.  That there is none does not equate to a good day so it was just a stupid comment. Uncalled for as I looked back on it this morning while getting the extra laundry in the mixed load started.

Laundry is one of those chores I never did before this disease. It crept into my life four or five years ago. Now I am defensive about my methods and organization of it.

But what started me down this meditative road this morning was not laundry, it was the thought of a good day.

A week or so ago on the family chat text session, Ken remarked that he could get pizza delivered to his slip where he docked his pontoon boat at the lake he lives near. I texted him late in the evening to ask if he was up for pizza Tuesday and early in the morning he said he was. Her face lit up when I told her that Ken was coming for pizza Tuesday.

A few days ago I asked her brothers and sisters to spend more time with Cheryl or simply call on the phone to chat. It is something she really enjoys. It is also something that is difficult for her to do on her own with her current diminished cognitive ability. Tonight her brother is coming to share pizza.

She probably will not remember he is coming until she sees him.

And Ken being Ken was already there when we got to the restaurant from the occupational therapy session this afternoon. Her face lit up again. He slipped into the back of the booth we selected across from Cheryl. They talked about family. Cheryl occasionally struggled to find a word or a name. Ken waited. They talked more about old times that had occurred in this very restaurant when it had a different name.

It was a great visit. Cheryl thanked me for the great evening. I thank Ken for his patience and gracious support and understanding of his sister’s struggles.

It was a good day.

Carpe Diem.

Last Evening Discussion

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Last night or maybe the day before Cheryl asked me whether we would have to get another booster shot. Covid-19 has drifted into the background since the death of E ii R and other news. I replied that no doubt someone was working on a new shot to address the specific variation of the virus in the same manner that a new flu shot is developed every year. We will ask Lauren when we see her in December.

The WSJ has this to say today about Covid -19.

Her commentary and question about the current covid vaccine challenge was mixed in with other comments about the many old Christmas, birthday and other holiday greeting cards that she has rediscovered and placed in a small basket crafted by my dad’s deceased sister Alberta. I still marvel at Aunt Bert’s skill. Cheryl marvels at all the cards that in her mind just appeared in the mail. Most are years old but they just came today.

Sometimes she replies to the messages contained inside each card on the card itself. Later when she reads her own reply, perhaps days later, it is new information.

Dementia is at least memory loss and everything is new and fresh. I have not been given that gift. Everyday is a new day even if it is Groundhog Day.

Carpe Diem.

Memory Loss

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Lately i have been reading Gwendy’s Final Task by Richard Chizmar and Stephen King. I became tired of violent crime novels and this book claims to be the final volume of a trilogy. Perfect I thought. Stephen can be wordy although I think he is a good story teller. And Maine is apparently a mess, Castle Rock anyway.

Gwendy the main character is losing her memory and is very aware of it. She maybe dealing with beginning Alzheimer’s or something like it. It is disturbing to her. I wonder if it is realistic to think that folks like Gwendy or Cheryl or others dealing with a chronic illness that destroys one memory are aware of it happening. It is a scary thing to Gwendy in the novel. She talks of how names just disappear from her head and the struggle she has to get the thought back.

There is a lot more to the story but Gwendy is actively hiding her memory issues. Initially she forgets names and her neurologist and psychiatrist doctor has taught her a little memory association technique that helps her through most situations. And Stephen King has a device in his story that works even better. I wish there was such a device for Cheryl. I wish the device did not require the ending that Stephen has worked out for Gwendy.

More and more I hunt for memory tricks to help her. It may be too late for many of those to be useful. Getting out of the car I repeat, “One hand on the door and one hand on the chair and you are out of there.” I have little knowledge of whether that’s working but more and more she reaches for the car door inner handle and puts her left hand on the seat back to propel herself up to a standing position. She often does not need me to repeat it.

Maybe that is helpful. Repetition and repeated talking about what to do makes a new connection in her brain. I often repeat the ABC song in my head to find alphabetical order. The sing-song about the months never stuck with me. So, the connection does not always happen.

Memory loss is discouraging to the care partner. Memory loss is mostly unknown to the parkie that has it. It shows up constantly. — Who put these papers here? Why is someone messing with my papers? Those little girls are always playing with my papers. I better put my papers in my office and close the door. Substitute any valid noun for papers. She puts on two pairs of socks because she forgot to take one pair off before putting a clean pair on.

It (memory loss) destroys any planning skills. The holiday season is next week we better start making cookies. I don’t know why they keep moving the months around. When I see the doctor next week I want to talk about my medicines. (It is a December appointment.) Sometimes anger appears because people keep changing things around.

Fortunately not all parkies experience this memory thing.

Carpe Diem.

More Things I have Learned

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After a sleepless night and an early rising at 5:30 am I begin to doubt my great idea of buying a new bed so we could sleep better. The last couple of nights have been a build up to last night’s insomnia.

After that experience I notice a couple of things. We are both on edge. She is upset that I am angry that she could not sleep and wants to offer an explanation. I am only-one-cup-of-coffee cranky and unwilling to accept any explanation made up out of whole cloth. As the day continues we will ease up and move on as we recognize that we both are very tired.

Most nights the big new bed has made a huge difference in our sleep. Lately I have been letting her sleep in a bit because it seemed to me that she was very tired in the morning. The LOUD AND ANNOYING clock did not wake her up. I think that will change.

I Have Learned

  • Kindness returns after 2 mugs of black coffee
  • Cheeriness requires more coffee
  • Grumpy can last all day if you allow it to.
  • Maybe listen to the explanation while getting more coffee
  • Get her to take 7am meds and get breakfast
  • If she wants to make Christmas cookies, let her.
  • Her conversations will wander all over the place when she has slept poorly.

Carpe Diem.

Organizational Techniques

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This is such a good story I am unsure where to start. Had I been more alert to how Cheryl treated this book I could have foreseen the difficulties that eventually came to her and became much of my daily life. But seeing how she treats it now is unimportant and I flatter myself into believing I could helped her if I had been paying careful attention at the beginning.

About three years ago – certainly prepandemic – Cheryl was struggling with her birthday card organizational techniques. She had several old books of names. One of these was left to her when her mother had passed from this life to the next. When a new month was approaching she would collect these to her in her office in the evening to make a list of folks whose birthday was coming to buy cards.

When her mom was still alive she would take Elaine to the Dollar Store to buy cards to send out. She took this over in time for her mother and eventually kept it up after Elaine passed away. She did this, of course, in addition to her own birthday card list. So, one evening I noticed she had several old handwritten books that she was looking through to discover whose birthdays were coming next month.

She had entered much of this same information into an Access database that she had created during her working career to help her and her mom keep track of things in an organized and businesslike manner. Cheryl was an extremely organized business woman. The most disheartening thing for me to watch as this disease progresses is her loss of organization and control. If the disease was merely physical it would, I think, be easier to deal with.

Nevertheless I put on my engineering hat to help with different methods to enhance and at the same time add ease to the organization of the birthday cards. In a second career as a high school science teacher which never completely panned out, I discovered a wonderful organizational tool that teachers use and might very well be adaptable to Cheryl’s needs. Teachers use a weekly planner to help with organizational tasks and as I discovered with my small experience, to keep track of how far behind you are with the course material. Usually these are dated with the year but at Staples I found a wonderful version that in addition to having only two days per page was lined and printed in a 8.5 by 11 format had no year printed. It could be a yearly calendar of birthdays, anniversaries and other information without concern for the year or day of the week.

The doomsday algorithm would give you the day of the week. Look it up. It is pretty neat.

She had been struggling with organizing the birthday cards. I suggested she use this yearly planner. In the store, she agreed that it could be a useful tool to organize the activity. I was proud of myself for finding such an elegant solution to her dilemma. Being the ever helpful hubby I produced from her Access data a list that I could put into Avery’s online printing tool and produce the information for the dates that were known. New information would come along with use and could be added by hand as the years evolved.

Almost a good idea but my idea therefore NIMBY and NIH reared their ugly heads in unison. And I, not to be defeated, began to defend my method to a woman who spent her working career in computer databases and systems analysis, as she, slowly crept into memory loss, confusion and dementia. What a hoot! I completely and totally missed the AHA when it went by about two years ago.

How to help without helping? I continued for many months to reconsider and think about how to make the Big Black Book useful to her. In her old multi-book system she looked at a single page to discover who had a birthday that month. An index my engineering mind shouted at me. You forgot to make an index. I thought about that for awhile and realized that the planner was organized by month, not day-of-the-week, not year, only day of the month mattered. It was self indexing. I was at a loss as to how to fix her thoughts.

I quit concerning myself with instructing her on how to use it. I just rolled with her confusion.

Over time the preoccupation with getting out the birthday cards dissipated. Other thoughts of how to help her organize it left me. I became an observer. She always tells me, if I don’t do it myself I can’t improve. She is right. I am merely her aide.

Carpe Diem.

Bump and Run

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Interestingly to me anyway yesterday’s plan works today.  I suppose that overtime I will come to understand that what I want her to do and the speed I want her to do it are not hers so it can never be.

Today’s class is sitting cardiovascular motions.  I features the Beatles and the Righteous Brothers as accompaniment. Nice.

Spirit in the Sky

Carpe Diem.