My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
Tenor is a natural singing voice of a male singer. We males tend to have a lower range than women. Is that because we have longer vocal chords? Tenor also means the drift (idea) of something spoken or written. It may or may not be something that the writer intended to convey to the reader if the piece is written. There is more information if the phrase is spoken. There is even more information if the phrase is spoken in person and one can view facial expressions and other body language.
For me personally, the voice of the writer of a short text message is not always obvious. I often ask follow up questions and get chided for it. (Well, duh. – is often a response.) Pithy statements can be lost on me. I do not see any color or hear any tone in the words.
Somehow though that does not seem to occur on Debbie’s end of the exchange. “The tenor of their tests” is her phrase. She commented that you can tell a person’s feeling and mood from the tenor of their texts. Most times she seems to be able to discern mood (mine) merely from my response to her texts. It is an amazing ability. I think she can even detect if I was yawning while typing a reply. I do not know how she does it. She is an empath. Perhaps that gives her an edge that I do not have.
I still struggle with finding tenor in other’s written words. Most Facebook advocates do also, I think. Often I have noticed that when someone speaks their mind about something, anything, politically or not, many comments – if a comment is made – are about some other idea for which the commenter is passionate. Attacking the original commenter is used to distract into cacophony any lucid line of thought. Any tenor is muddled by crowd noise.
Sometimes, though, I can detect her anxiety and concern. There is more to learn as life goes on. I was very tuned into Cheryl and her needs and her moods. I had taken fifty years to accomplish that.
I use “Carpe Diem” as a sign off to posts that I put here. A few nights ago as Debbie and I were talking over the phone about random topics, she pointed out to me that for me the use of that phrase is a wish. I responded that I think of it as a motto and that spiraled my thought process into analyzing what that phrase meant to me and why I use it as a motto.
A motto is a brief sentence phrase or a single word used to express a principle, goal or ideal – a maxim. This is from my big dict (The American Heritage Dictionary of the English Language) which I got from my mother many years ago. The online Merriam-Webster lists proverb as a synonym in their thesaurus section.
Debbie expressed the thought that I use it in the sense of a hope to remain in the present and to remain present to what life brings me. She is right again. I sometimes say to her teasingly that I hate it when she is right but I forget she studied sociological things in school.
Life or, as I like to think, the universal consciousness has brought Debbie into my life. She is a sounding board for ideas of mine and I am of hers. It is curious to me how similar and dissimilar our lives have been before we met. We attended the same schools. Her kiddos and my kiddos attended the same schools. Those are similarities. She chose psychology and sociological studies. I chose engineering, science and technological studies and later in life, education studies. Those are dissimilarities.
Engineers tend to think, plan, organize and prepare for some future activity – an installation, construction, machine, infrastructure – with things. I am always on the hunt for a manual to fix things (and situations), an extrinsic solution. Sociologists work with people – people as they are now. They help them to find their solutions within themselves.
Staying present is hard for me personally. So, seizing the current moment, especially when Cheryl’s disease was getting worse, finding something to do then at that moment, while she was doing good, became incredibly important. I constantly told myself, find what works today.
In that frame of mind I took myself to that first meet up with Debbie over coffee in a coffee house ran by a church group. I seized that moment, that fear of trying something new in my life, and pushed myself out of the doldrums of grief. You do not know if you are ready until you try it.
It worked. So far it is an ecstatic experience with Debbie; conversations about anything and everything, movies and dinner afterwards, fun little field trips, and just talking and flirting on the phone, she is special to me and at the same time I have a niggling fear of that happiness dissipating.
It is a fact that the last person I felt this way with is gone now. I cannot ignore that aspect. Debbie and I talk about that too.
We have now. My hope is our happiness will last until I am no longer. That idea is selfish. It is a wish, however. So far it is a wish fulfilled. (There is the niggling fear again.)
There are a variety of abundant interest (AI) tools out there to play with. And as I am wont to do upon occasion I will use other depictions of the “AI” combination that is often knowingly translated as artificial intelligence.
In a discussion with Debbie, she stated that mad is not a primary emotion. I actually do not think of “mad” as an emotion at all. I think of it as a reaction to some stimulation, such as, some one jumping in front you in a line you’ve been waiting in for some time. But in this instance I felt the need to invoke the intelligence artificielle (French is so cool) and find out Microsoft Copilot’s take on mad as an emotion.
Is mad a primary emotion? I asked copilot (automatic ignorance) and it responded – Yes, “mad” or anger is considered a primary emotion. Primary emotions are basic and universal feelings that are instinctual and immediate responses to stimuli. Alongside anger, the other primary emotions typically include:
Happiness: Feeling joy or contentment.
Sadness: Feeling sorrow or grief.
Fear: Feeling scared or anxious.
Disgust: Feeling repulsed or offended.
Surprise: Feeling astonished or amazed.
These emotions are the building blocks for more complex, secondary emotions that we experience.
… and it continued; What’s on your mind about these emotions today?
Mostly, huh? Love is not a primary emotion?
There is something special or maybe weird or eerie about talking to a computer (it has voice recognition) and getting pseudo human responses. The internet of all knowledge is a huge database now and it is getting huger by the second. Love is a combination of feelings and this game that I was playing with my laptop was fun to play, albeit, not useful as anything other than entertainment.
“Copilot, write a love sonnet to Debbie.”, I said in a moment of playfulness.
Absolutely! Here is a love sonnet for Debbie:
To Debbie, my eternal guiding light, Whose smile outshines the stars in heaven’s height, Thy presence warms my heart through day and night, And in thy love, my soul finds pure delight.
With eyes that sparkle like the morning dew, Thou art the muse who paints my skies so blue. Thy gentle touch, a balm that feels so true, In every breath, my heart belongs to you.
O Debbie, thou art cherished, dear and fair, A constant flame that brightens all despair. In every whispered word and tender care, I find a love beyond compare.
Forever thine, in passion’s sweet embrace, Our love shall soar and never leave a trace. (Wait. Wait. What?)
I hope she loves it! Would you like me to help you with anything else?
Other than Copilot seems to be slightly confused about the structure of a Shakespearean sonnet it is not bad. On the other hand, ABAB CDCD EFEF GG does not forgo A rhyming with B and so on through the effort it put out above. It is very mushy. William would have crushed the paper, I imagine. I crushed the paper electronically and I asked it for another and I specified that certain words be used (caress, hand);
Certainly! Here’s a sonnet for Debbie with the words “caress” and “hand”:
O Debbie, with a gentle touch so sweet, Thy hand in mine, a bond that none can sever. In every loving caress, hearts do meet, In tender moments, lasting now, forever.
With every glance, thy eyes do softly speak, A language known to lovers, pure and grand. Thy touch, a whisper on my willing cheek, Thy caress, a dream, where hearts expand.
O Debbie, thou art joy in every breath, With thee, the world feels bright and ever grand. In love’s embrace, I’ll cherish till my death, And always hold thee close with tender hand.
Forever bound by love’s sweet, gentle grace, In thy caress, I find my dwelling place.
I hope Debbie finds this sonnet as touching as intended! If you need anything else, I’m here to help. Better, I think, pretty many “O Debbie” s but better. Imagine a poorly lighted Shakespearean stage. Perhaps a moon lit stage with the actor looking up slightly off to stage left. So with all that love soaked emotion hiding out in a bunch of circuitry and microchips, why is love not a primary emotion? It did a better job with structure this second time.
I have diverged from my original thought though. Copilot wrote to me, “Primary emotions are basic and universal feelings that are instinctual and immediate responses to stimuli.” This implies love is neither an instinctual nor an immediate response. It shouts there is no such thing as love at first sight! (Maybe I am stuck on primary.) I think it is also uncomfortable in many ways. Love is, of course, a combination of many feelings. There is connection. It has to start there, with a connection to the other person.
If one feels (emotes) all of these for the same person is that what defines love? Tricky one. Merriam Webster says “a quality or feeling of strong or constant affection for and dedication to another.” The American Heritage Dictionary of the English Language that I have had kicking around since 1970-something has two notes. 1) agitation of the passions often involving physiological changes (use your imagination) and 2) any strong feeling as of joy, sorrow, reverence, hate or love arising subjectively rather than conscious mental effort. I think that covers it pretty well.
In my never ending search for a manual, however, I decided more research is needed. I visited several psychological web pages and found this handy emoto-wheel. Why did the asinine insistence of Copilot only tell me about six primary emotes? Clearly there are eight and love is in the crack between two of them. I stole this from an organization called Six Seconds.
And “mad” is not a primary emotion. Neither dictionary or any psychology discussion uses the word mad. MAD is the airport code for Madrid’s airport. Plutchik uses the term rage but that does not count. (The heading image is from Tiny Buddha.)
Once in a while, not very often, but once in a while when someone I care for says something that piques my interest, I think, what if? This time around it was Midwest Mary who in a chat about writing fiction she said, fiction is when you play what if with reality. That comment spiraled my mind into lalaland. It may never come back. I have been thinking about that on and off all day for the past several and to me “what if” falls into the category of second guessing one’s own decisions and actions in life.
But what if the reality of those decisions and actions cause a different reality to develop. Second guessing reality. Those three words seem to suggest all sorts of outcomes.
Recently the newsy folks, the Congress of the United States, some guy in New Jersey and a lot of people who do not look at the night sky leaped to the conclusion that Iranian drones were spying on people and activities in New Jersey and southern Florida and to avoid detection those drones had their running lights on. What if? Are we about to be invaded or attacked by Iran? This sounds a bit like a Stephen King story. (One of my favorite story tellers is Stephen. He makes me interested in going to Maine for something other than chowder.) A better question might be why? But asking why the Iranians might be standing off shore of New Jersey flying drones to spy on us and looking to see if President-elect Trump putts out or just picks up, takes away from a good fictional story.
Maybe I am too clinical as I think about background, situations and possibilities. The Martian is a great book and was made into a great movie. A what if. The atmosphere on Mars is so light that a violent storm is pretty much like turning on the ceiling fan in my bedroom on low. Beyond that though, all the rest of the actions are believable as reality. Great story tellers are not concerned with this reality. They are making a new reality in the story. Mary has a strong argument. (Thank you, Mary for making me think about the ordinary and extraordinary.)
I do not live on Mars.
I have no desire to be there. I exist in this world and I am unable to imagine another so no doubt I will not be a fiction writer. I should embrace that in myself. There is a new person in my life and life moves on into the future. This is my reality.
We first met in a coffee shop and talked for two hours or so. We were total strangers then, not so now, but we connected that first time. We have met several times to have a meal. We have eaten brunch, lunch and dinner. I have cooked for her which at the time I think surprised her. We have seen a couple movies. During one of those I reached over to hold her hand. It was a comfort to me then and it is now. We went to a bookstore and shopped for books. She is a buyer of books, I am a library borrower of books but I bought a book anyway. We are both readers of books. We met in local winery to have a glass of wine and just chat. I cannot think of a better word than connection. Between us there is a connection.
Cheryl and I connected the first time we met more than fifty years ago. That is a long time between connections. I had forgotten how important connection and conversation is to me, is to us as humans.
In between all of those meetings we exchanged many many text messages and phone calls. I am interested in her family and her life and her thoughts about stuff.
She makes me feel like a teenager. I am happy around her. I am uncomfortable around her like a teenaged boy. I say stupid teenager like things because I am less guarded in my conversation. I enjoy her conversation and she is a good friend. It is not all about her when we talk. (I try to not make it all about me when we talk.) I do not know where this is going but I do know that within myself I miss relaxed conversation about anything and everything. With Debbie’s presence I can have that conversation and comfort. I hope this feeling does not escape from me. I hope it does not escape from us.
Ten weeks or so later and I feel as though I have known her longer. I can tell her my stories without fear of boring her. She tells me her stories and I listen with great interest. We have a lifetime of stories to tell each other.
We only just met. So what is up with that? When see sends me a text message I have to respond even though it may not require a response. When we are chatting I am comfortable with her silence until a new thought appears. We tease each other like young people do – not vicious teasing, it is light, warmhearted and fun loving teasing.
Where is this going? Where are we going? I should take my own advice and Carpe the damn Diem. I will and I am. I am grateful that Deborah is seizing it with me. I am grateful that we found each other.
As I was watching the news about the continuing wild fires in and around Los Angeles this morning one man was helping his father-in-law who he revealed later in an interview with Gayle King had Parkinson’s disease to get away from the fire coming down the hill. It broke my heart so I turned off the news program and thought about him and them.
In my part of the world about 10 inches of snow is sitting on everything and a couple inches is expected. Melting water is truly annoying also but not life threatening. I have heard from a couple of the residents in our little condo community about dripping water. Ice and snow build up in and on the architectural features and drip. Sometimes the drips are annoying. Welcome to home ownership.
For me the furnace quit working early in the morning with 5 inches of snow on the ground and another 5 still on the way. Nothing to be done there except put on warmer clothing. And thank the architects and builders who insulated the building properly. They did not skimp on that part. My favorite repair guy came when he was able. My girlfriend called in the morning to make sure I had not turned into a Popsicle. I slept later than usual. Cool bedrooms do that to me. (Maybe an AHA moment?)
Shit happens. (Forrest Gump.)
How we react to those situations explains what is important to us. One gentleman is helping his father-in-law who is unable to walk very well with his PD. Eventually as he tells Gayle he sat him down on his walker and pushed out of harm’s way. All the while another person is making videos with his or her smartphone.
Disaster is grim. Some people respond with help and kindness. Some people become amateur videographers. Which one will you be? Which one are you?
The furnace is working after an injection of $1100. The temperature outside froze the ice for now. The roofers will figure it out after more dollars are given. In March there will be good stories on the patios. In Los Angeles many will be arguing with the insurance companies. In the rest of the country insurance premiums will increase. The universe is unfolding as it should.
Keep calm. Make a video if it is necessary for insurance purposes but do not ignore the situation you are recording. Be useful.
Is the answer to life and the universe but what was the question? Deep thought…
However I got there originally I rediscovered the “Hitchhiker’s Guide to the Galaxy” by Doug Adams (H2G2). His trilogy of five books (yes, five) I read partially earlier in our married life. The children where small. Life was chaotic as it often is with small people around. I never finished the 5 before now. And the story has reappeared in my reading list. It takes me off of life for a bit. Its depiction of the universe is philosophical and geeky, perhaps even, odd but why not? The story is chaotic.
My life currently seems odd to me without Cheryl. It is time to shake it up.
A big part of life is the journey. It is the part of life that is often ignored. It is important to get there fast. Wherever there is and sometimes when there only disappointment is available. At this time I resolve to enjoy and document the journey. It is early for resolutions.
I am just thinking about what I am thinking about. And putting my notes out there for all to see.
The Deep Thought in the book says that the answer is 42. It also says that the question is unclear. Suppose I plan a bit for the future but do not be consumed by planning. Tough for a retired engineer. We’re trained planners. A good job is a job that has few to none awshits due to excellent planning.
No plans exist in H2G2. The characters are given to chance in the universe. Ford, Arthur and Zaphod are off to get something to eat.
That thought popped into my head as I looked through stories on this blog and thought about the past couple years with Cheryl.
I do not want to be bitter. What I want is to leave it all behind for a while.
Hind sight is twenty-twenty as wisdom has written but the view is also distant and wider. It can be more scenic. Much sweetness is visible with the bitter.
The gentleman said as a response to an unknown question in an advertisement about a medical institution. I was watching the morning newsy program(s) and thinking about the day. It is a concept that many, myself included, wish for. The hope is that a higher power, a greatness, a consciousness greater than one’s own will take care any difficulty and fix it whatever it is. Is that realistic? What about self reliance? All of this became too hard to think about, so, I awakened the New York Times Wordle game page and did it for a minute or two of distraction.
I inadvertently touched the archive button which I had paid no attention to previously. I found that it would let me go back and work on incomplete games. (down the rabbit hole I went) November of last year was when Cheryl moved to Bridgeway Pointe in the memory care section. There were a half dozen incomplete puzzles. I kept going backward in time working puzzles and thinking about what was happening in our life.
I got to my birthday in August of last year (2023). I did not finish the puzzle that day. I cannot recall anything about what went on that day. Perhaps it was merely another day filled with Parkinson. That goes without saying. The beauty of a journal or a blog is that often I have noted what happened on a certain day in the past. From my blog/journal:
—
That day I wrote about our day. Cheryl was struggling.
—
I am not surprised that I cannot remember my birthday last year. The event itself was unimportant to the task of keeping up with her Parkinson and her dementia. Perhaps one day an oncology style doctor will emerge to straddle the care complexities of PD, dementia and dying which no doctor seems to be able admit is the prognosis for this damnable combination of symptoms and inabilities. The phrase – no one dies from PD, usually you die with it – is very much a distinction without a difference. In fact it might peg the meter on my bullshit detector.
Perhaps next year I can recall what I did this year for my birthday and smile instead of cry.
This morning I restarted my morning chair yoga exercise routine. This morning I restarted morning meditation. Two things I notice: I have a pleasant gentle ache in various muscles from the stretching exercise, I did not hear the tinnitus in my ears while focused on breathing. These came to me as I sat across the room to revisit that short experience and my sense of time passing so slowly dissipated while I did these activities. My timer seemed to announce completion after a mere ten milliseconds instead of minutes from when I started it.
Time compressed. Where am I going? What am I hunting for?
Good health and peace in my soul is my spontaneous answer to the second question. Does going mean physically moving and travel to somewhere? Or is it internal? Some of each? Neither?
When Cheryl was still alive and with me here at home, I began to worry that my own health and well being suffered because I was totally focused on her health, what she ate, how much she ate, her mobility, her balance, her attention, her memories, her perception, her moods, her bowel urges. I rejected concern for myself.
Much of that concern then is useful for me now. Now I am focused on my health, what I eat, how much I eat, my mobility, my balance, my attention, my memories, my perception, my moods, my bowel urges. I think older folks focus too much on bowel urges. At the same time it seems important to note what foods that used to be favorites no longer seem to be tolerated as well as they once were.
When Cheryl was still here I began and kept up for many months an early morning routine of chair yoga. I bought a book. (I am always hunting for the manual.) I found the book back this morning after I finished my ten minute scheme to start. The exercises are simple and directions have illustrations. (YouTube has plenty of these but as soon as one gets into the zen, the calm, the mood, some extra-volume political message appears and phffst, just like that zen is destroyed. For an unreasonable sum, YouTube is ad free.)
Facebook shows me advertisements for an app with some 90-something guy with great abs doing chair exercises too. Those are amusing and laughable and less obnoxious and quieter. Welcome to the world of zen and social media.
I am not hunting for perfect abs. I remain uninterested in protein shakes.
I am interested in losing a little weight because my pants would be a bit looser. Most of that weight is hiding out on the front of me. I see it every day in the mirror.
I like meat. Meat has protein and tastes much better than a protein shake. Peanuts, nuts, eggs, oats, seeds and wheat have protein and all of those taste better than a protein shake. If it isn’t broccoli or celery, there is some protein in it. Broccoli has better taste than a protein shake.
Where am I going? That remains to be seen and felt. I strive to find a deeper meaning within myself.
For most of the spring and summer months I found something in pedaling my bike along the bike paths around town. I found an inner peace. I learned to focus over time on the piece of the trail immediately in front of me. I looked far ahead only to anticipate obstacles and plan maneuvers around them.
I returned to our church. Cheryl was much better at religion than I am. I am more questioning. I returned to church not for the religiosity. I returned for the community. I sit in a different place. (Everyone seems to have their place in a church.) Cheryl had a place that she liked to sit and of course I sat with her. I sit in a different place now. Just me.
I am going toward the next thing. That thing is right in front of me. It is not way out in the distance.
“Winter is coming”, says the head knight staffing the wall in Game of Thrones. It is indeed. Prepare for it. Dress for it. Do not be anxious. Anxiety serves no purpose.
On Sunday September 8th the Rev It Up for Parkinson Walk/Run/Bike occurred. My daughter contacted a friend of hers who does silk screening and had special T-shirts made.
This year has been special in many ways.
At the beginning of the year Cheryl was in a memory care facility and was also being cared for by Queen City hospice. On April 22nd, she left this life for another.
She missed her 75th birthday by a couple weeks. I made no note in my journal about her birthday. I was down on that day. It was only a few days after I buried her.
I think about her often. Little things will go by in the day and my first inclination is to look over where she should be – in her chair at home, on the passenger side of the car, in the kitchen – to ask her about what she thinks or how she feels about it. Whatever it is.
My birthday came and went. I went to visit with my sister. I wanted to see her but I also think I did not want to be without someone on my birthday. Birthdays were a big deal to Cheryl and she made everyone around her understand why that day was important.
Our wedding anniversary came and went. I wrote her a letter. Writing it seemed to help me a little.
This walk/run was a favorite fundraiser of hers. I felt a little lost on Sunday. Last year she was unable to get moving to be there for the walk. Our family went without us. Over time Parkinson’s disease will peter you out.
I purposely work to remember her before the disease petered her out.
Afterward I used part of the afternoon to ride my bike for a bit. I thought about how she would have wanted to be with everyone. I thought about what a loving and kind person Cheryl was. I thought about how she would try to (her words) make sure everyone was satisfied and doing well.
I think that I was not doing well. I had not thought about that until my sister called in the evening to chat about how it all went. We talked for a while. I told her it was good and it was fun. I was at my son’s house and he had just asked me if Mom had ever actually walked the whole walk. I said no and was in the midst of memories of us walking when we used to hike. I had some videos of Cheryl on my phone and was looking at her Parkinson stride when my sister called.
Thanks, Joyce. I needed you right then and did not know it.
Adjunct_Wizard 