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.
That is the thought that jumped into my head as I pondered life’s choices and what we make of them when we make them.
The young man yesterday morning who in his zeal to get through the intersection on the Yellow traffic signal even though it was obvious that he had no chance of clearing the intersection before the Red because the service truck before him was also in the intersection blocking it chose to ignore his surroundings and become an asshat. (Was that judgmental of me? I chose to be judgmental just then.) I praised him for his eagerness to get his workplace twenty milliseconds faster as the rest of us became 20 minutes late while I waited to turn left through his driver-side door.
The Rule of Lines: The other line always moves faster.
1st corollary: Switching lines (a choice) removes the delay in the queue you entered originally
2nd corollary: Switching back (a second choice) much like Schrodinger’s cat screws it up for everyone.
Choices have consequences. Own them and learn from them.
All the time I am writing this and thinking about these I have stalled my original task I set for myself of going to the grocery store. Sometimes choices that need to be made are distasteful. Today for me that is pushing a grocery cart.
Cheryl taught me to make a list before entering the store. Mom just went to see what interested her. Her attraction to Sam’s Club was the idea that one could snack their way around the store. This idea was adopted by the Thriftway store that I would take her to when she had coerced me into doing it. I have found that Cheryl’s list method works well along side of Mom’s spontaneous want method for me.
It appears that I am fretting before doing. This attitude will keep one at home idling while the rest of the world moves on.
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.
I thought; Just sit and observe. Just look and see. Just be a part of the consciousness. Just be.
A bench by the path in a park. Birds and bugs. A chipmunk forages. Snippets of mumbled conversation and comments of walkers and those who are walking. A view of the lake. A bird calls.
Autumn in mid-season. Midday but the sun low. A bright warm day as its radiance diminishes.
Lichen on the Oak near. Far, mostly green but here and there another color as the deciduous decide the weather to come, the darkness to come.
Quick steps now. A duck calls to its mate. Music. And many walkers cannot disconnect. A child counts bounces of his basketball. A hundred ten!
I walk on. From the other side of the pond, a different view. An Osage is fruitful. A tiny spider walks up my arm and wonders why I am atop its bench.
It has been six months today. How are you in your new existence? I have to admit to myself that I still miss you greatly. You were so much of my life how can I not?
I wrote on my blog (I am sure that you read it.) about my own personal “If Only”. If Only is the title of the next section of the Grief Share series. I have not watched the video yet but I will later today in preparation for helping Sr. Janet tomorrow.
In case you forgot, here is what I wrote the other day:
If Only
There is no percentage in “if only”. None. Although many of us spend considerable time with if-only style thoughts. If only I had completed (insert item here) I would be (insert perceived superlative or horror here). If only I had asked (him, her, them) about the consequences of (this, that , those) we would be (better, worse, still wondering). One can go anywhere with a good if only.
There is no percentage in it. Nothing is gained by speculative thought and other attempts to predict present out comes from “if only I had”. Additionally there is no real risk except perhaps diminishing self worth. God (or whatever one’s concept of God is) as the eternal knows the future and needs no predictors. Past, present and future is the same to the eternal.
Fuzzy philosophy there but what-iffing your past actions does not help today’s actions.
Grief Share talks about this in long winded generality. The “if only” that I deal with often when it jumps into my head is why could I not see that she was moments from leaving this existence when I kissed her good night the evening before she died.
This is my “if only”. What would be different today if I had sat up with her as she took her last breath? I will never know.
If Only.
At the time I was experimenting with prose poetry in a way. You know what a corny poet I am. I still have those old letters we wrote each other in high school. I have yours and mine because you never threw anything away. Neither did I. Those notes are special to me. Not long after you died, I read some of them and thought that I should put them together and match the dates. I did not. Much like looking through old pictures (I found the packets from our trip out west with the kids.) I look through your letters and then find my reply. Good heavens, I was smitten with you back then.
I am smitten with you now as I think about those days and the life we had together.
A fellow blogger wrote this comment to me: “I was with my dad in his final hours, lingering long. My older brother wondered aloud if he was hesitant to leave while I was there, as if to protect my sensitive soul. When I went home to sleep, he went on to eternity.
I wrote back: “ … And that is what I tell myself. My father (I think) waited until Cheryl and I left to eat a little lunch. When we came back – Dad was gone. I simply did not want her to feel abandoned. I think that is the source of my sadness when it pops into my head. — and this thought and how it affects me is what I will think about today as I walk and try to enjoy this beautiful Autumn day in Ohio. Those thoughts make it all about me and I do not want to feel that way. At other times I think Cheryl hung on as long as she did because she wanted to be sure that I would be okay. That was her personality. (that thought also makes it about me.) Today is Monday. Cheryl died on Monday April 22. Six months ago today. I think I am missing her a little more today. Thank you for reading and your comment. It is a comfort.”
Do you remember that? We went to be with Dad that day at Hospice and we went to get some soup in the little lunch room they had there. That is a vivid memory of mine.
I can still see Dad’s gray face. I can still see your gray face. I can still see Mom’s gray face. I can still hear the silence when Laura stopped breathing.
Even when it is expected, death is unexpected. If you had wanted me there to be with you that morning and could not wait any longer, I apologize for not getting there to be with you. Please do not think that I abandoned you. If you knew when I was coming that morning and did not want to upset me with your silence, thank you but I was upset anyway. (pretty sneaky, girl)
I miss you today. I am going to take a walk in the sunshine and think about it all.
If you are allowed to, save me a seat next to you. We will talk more when I get there.
friday comes with cool
sun peeks higher in the sky
autumn is awake
she speaks in my head
often with her quiet voice
our love continues
this day Cheryl is
this day memories of us
happy memories
Haiku form – 5 : 7 : 5 – is a favorite poetic form to me. Real poets, I do not consider myself a real poet, are able to paint a picture, elicit an emotion or start a meditation with seventeen syllables. Distilling feelings and ideas to their basic form. I have noticed in myself that many times words do not work. The search for a word with the perfect nuance of what I feel alludes me often. Perfection at reading what is not there is not my strongest ability.
And yet, funneling feelings into seventeen sounds is sometimes satisfying.
Meditation (I use that word instead of prayer) comes in many forms to me. Today it is distillation of thought into seventeen bits of non-prattle.
abracadabra in mind appears some pictures our happier times
grieve companion lost happy memories abound love is present, found
Thinking about Cheryl today as I write about our life with its past joys and wonderful trips and the sadness and struggles near the end has pushed me into haiku today. Waiting to see what the rest of the day brings and the realization that existence takes care of itself without my help is comforting.
There is no percentage in “if only”. None. Although many of us spend considerable time with if-only style thoughts. If only I had completed (insert item here) I would be (insert perceived superlative or horror here). If only I had asked (him, her, them) about the consequences of (this, that , those) we would be (better, worse, still wondering). One can go anywhere with a good if only.
There is no percentage in it. Nothing is gained by speculative thought and other attempts to predict present out comes from “if only I had”. Additionally there is no real risk except perhaps diminishing self worth. God (or whatever one’s concept of God is) as the eternal knows the future and needs no predictors. Past, present and future is the same to the eternal.
Fuzzy philosophy there but what-iffing your past actions does not help today’s actions.
Grief Share talks about this in long winded generality. The “if only” that I deal with often when it jumps into my head is why could I not see that she was moments from leaving this existence when I kissed her good night the evening before she died.
This is my “if only”. What would be different today if I had sat up with her as she took her last breath? I will never know.
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.
I really enjoy playing this game from the New York Times. It gets me to think beyond what I perceive.
One of the words today was “shiva”. To me in my environment in my meager knowledge of the world, other cultures, other traditions, “shiva” says mourning and is part of Jewish faith tradition. I am also a poor speller. That shiva is spelled with a h on the end. It can also be something that one does in a cold late Autumn drizzle while waiting for the bus if you are located in the part of New England where the r is often dropped at the end of the word. These two thoughts in combination led me to type shiva into Google’s AI driven (assisted?) interface.
The Hindu god of destruction appeared with a picture. All became clear. Before I returned to the NYT Games page to search for the rest of the connections to shiva, I spent some comfortable blissful time reading about Brahma, Vishnu and Shiva. (Creator, Preserver, Destroyer) I play this game every morning but I do not always finish it because I become impatient with myself and the search for the connections. Patience is a virtue that has to be practiced often even in small ways to become comfortable. And I am not a keen observer of pop culture. Some connections are those kind.
All of this came while I am baking another new recipe and became distracted with thinking that Carl Sagan had written a book called Connections but his book is actually entitled, “Cosmos Connections”. I used to have it somewhere. His show from the 1980s is called simply Cosmos. Astronomy, planets and stars and night time sky phenomena also fascinate me. Oops I have fallen down another rabbit hole but it has led me to thinking about Cheryl. Or maybe the smell of baking has caused me to think about her.
Cheryl at the very end of her life became enamored with the moon and its phases. A couple times sitting with her in the evening in front of our home watching the moon and airplanes and the international space station go by, I saw the wonder in her eyes and voice as she marveled at the bigness of it all and the smallness of us. These little snippets of lucidity appeared at random. I think she was sensing something that I could not.
I miss that and I miss her. I am glad that our connection is so strong. I am glad that she leaves me little messages around when I hunt for things.
Carpe Diem… (I’m sure you can smell it. Banana Nut bread)
Two days ago I tripped over this recipe from the New York Times for an apple tahini tart. I wondered what tahini could possibly be. That thought led me down the rabbit hole of reading and cooking. It is my favorite sort of hole to fall into. I can be lost for hours.
Tahini is merely toasted sesame seeds and some oil. I found a recipe and method for making my own from scratch. When I was finished the product had the consistency of peanut butter and a similar albeit milder flavor. I should back up a bit. After reading the entire NYT recipe and how to create my own tahini, I looked through my larder. Low and behold I had everything except for apples. (Apples generally do not last long in my house.) Off to the store for more on Sunday morning I went.
I made the tahini on Saturday and refrigerated it overnight. On Sunday I made the pastry and placed it in the refrigerator as directed to rest a couple hours while I went to the grocery store to find apples. IGA had Pink Lady apples just as I had hoped for when reading the recipe. (I become ecstatic when I can find all the exact ingredients to make a new recipe the first time.)
When I made the tahini sauce by mixing the tahini with the other ingredients I covered it with a piece of waxed paper to keep out any small fliers that seem to appear when I bring in tomatoes from the small garden we have. I asked Cheryl (I could feel her nearby.) where did you put the rubber bands? I could use one to put around the top of this container of sauce. I found the Rubbermaid leftover tubful of rubber bands that I had recovered from her office several months ago and carried it from my office into the kitchen. When I opened it to find a suitable elastic band I found also a note from Cheryl.
A yellow post it note was wrapped around a flash-drive with the message “Sr. Pat” and a crossed out phone number. The flash-drive contained a video file that our grandson Max had put together some time ago. That video is a collection of early Christmas videos that his Dad made twenty years ago. I could not watch it all the way through until today when I could give myself time to react to the memories.
October is tomorrow and this is the time of year when Cheryl would start agitating to decorate for Christmas and I would resist (because I did not share her enthusiasm.) She sent me a message. “Christmas will be here before you know it!” she would say (and was saying this time.) I would argue that it is ONLY October. Thanksgiving has not happened yet! Today I argued that I had to finish this tart first!
This will be the first Christmas without her. I miss this discussion. I wonder how I will react to that fact in a few weeks. I wonder how I will react to the first Christmas without her in a few months.
Yesterday I put the flash-drive aside to finish assembling the the tart. Here is the end result.
I took it to my son’s house to consume after the football game. I will keep this recipe to do again with other fillings.
Tahini Apple Tart By Andy Baraghani Published in NYT website Sept. 16, 2024
For the dough
1½ cups all-purpose flour, plus more as needed
1 tablespoon sugar
1¼ teaspoons kosher salt (such as Diamond Crystal)
¾ cup/170 grams unsalted butter, cut into small cubes, chilled
Ice water, as needed
For the tahini spread
⅓ cup tahini
3 tablespoons sugar
3 tablespoons unsalted butter, at room temperature
1 large egg
¼ teaspoon kosher salt
Assembly and filling
2 pounds crisp, tart apples such as Honeycrisp or Pink Lady (about 6 medium apples)
1 tablespoon cider vinegar or lemon juice
3 tablespoons sugar, plus more for sprinkling
1 teaspoon ground cardamom
Heavy cream, for brushing
1 to 2 tablespoons white sesame seeds
Vanilla ice cream, whipped cream or crème fraîche, for serving
For the Dough: Whisk together the flour, sugar and salt in a large bowl. Dump in the cold butter and toss until coated in the flour mixture, separating any pieces that stick together. Use your fingers to smush and flatten each piece once.
Drizzle ¼ cup ice water over the flour mixture. Repeatedly run your fingers through the mixture, as if rummaging through a drawer, until combined. The dough will start out looking dry then become very shaggy. Transfer to a clean work surface and use your palms to knead the dough together, forming a ball with no dry spots. You may need an additional tablespoon or two of ice water to help the dough come together, but even then it will be shaggy, not smooth or shiny.
Wrap the dough with plastic wrap and use your hands to flatten it into a round disc about 1-inch thick. Chill for 2 hours or up to 3 days.
Lightly dust a clean work surface with flour and roll out the dough, turning it to prevent it from sticking between rolls, into a 14-inch round. Gently gather both ends of the dough and transfer to a parchment-lined baking sheet. Refrigerate the dough while you make the sesame spread and apple filling.
For the sesame spread: Whisk the tahini, sugar, butter, egg and salt together in a medium bowl until smooth. (You can make the sesame spread 5 days ahead; just bring to room temperature before using, so it spreads easily.) [Ask Cheryl where the rubber bands are located.]
For the filling: Heat the oven to 375 degrees. Peel, core and thinly slice the apples (see Tip). Toss the apple slices, vinegar, sugar and the cardamom together in a large bowl until the sugar feels like it has dissolved.
Remove the dough from the fridge and plop the sesame spread in the center. Use the back of a spoon to evenly distribute the sesame spread, leaving a 2-inch border. Arrange the apples on top in whatever manner you like. Fold the edges of the dough over the apples to form the crust, then brush the dough with heavy cream and sprinkle with sesame seeds and more sugar.
Bake on the bottom rack for 40 to 50 minutes, rotating the pan halfway through, until the crust is deeply golden brown and the apples are tender. Let cool for 20 minutes before slicing and serving with the topping of your choice.
I often bake bread in a convection bake and I started this tart in a convection oven. I got used to doing this in our old house. The temperature is uniform in a convection oven. After the first twenty minutes or so I rotated the cookie sheet that I had put the tart onto. I also changed the oven setting to bake from convection bake. I gave it a few minutes over the allotted time. As you can see from the photo it needed perhaps a short time under the broiler to get that golden brown color. I chose not to burn it.
I have been reading a lot about death lately. Looking for something else in my little office, I rediscovered a book by Robert Fulghum entitled From Beginning to End, the rituals of our lives. It seemed to fit with my overall end-of-life curiosity and reading I have pursued of late so I placed it on the table near where I often sit to read in the evening. I have not re-read it yet. I have many of his books. I may re-read all of them eventually.
I did not think much about death before these past few months. I am driven in this direction because Cheryl is gone. When she was alive either with me or comfortable in the memory care section of Bridgeway Pointe, I searched for information about her condition, how to help, how to react, how to, what if, generally I was hunting for the manual. I became very observant while she stayed at BP. The other day I looked back through my journal. I read this entry: “Thursday, April 18, 2024: (after several notes) – I think today I see that Cheryl is close to death. Her eyes are receding into their sockets. Often her right eye does not open. Her voice is almost gone. – (list of vital signs)” Reading this several months later brought me to the realization that I anticipated her death many days before it occurred. This notation was 3 days before.
Jodi Picoult in her novel The Book of Two Ways which is about an egyptologist turned end-of-life doula, the main character in her role as doula helps the dying to transition. She also helps the caregiver(s) after the death. Being an end-of-life doula is a real occupation. Had I known there existed people who did this sort of work I would have tracked one down to help me and Cheryl (but mostly me.) In the characters role as egyptologist she delves into ancient Egypt, their gods, belief structures and spells and rituals. In 1500 BCE these guys were concerned with the resurrection of the spiritual body and the immortality the soul. The rituals of helping the soul to transition into the after-world are captivating to me. I still hunt for the manual.
I want to know what is next. I write that thought with the realization that I cannot know what is next. Even so, right now, it is a strong desire. I found a book called “Life after Death”. My first thought was “Aha! There is a manual!”
Deepak Chopra in his book Life after Death writes, “Soul bonds occur on the astral plane just as they occur in the physical world. Relationships in the astral plane mean that you are vibrating in concert with someone else’s soul and therefore feel a heightened sense of love, unity and bliss. … When the disembodied soul tunes in to the frequency of a loved one back on the physical plane, that person may feel the presence of the departed…” I sure hope that is what is going on when I feel Cheryl near me.
I long to hear, strain to hear her voice. She knows what is after this physical life. It is very hard to hear what she is saying to me from that higher plane.
I have so many more questions. I could not ask Cheryl about what is next. I think she knew but was unable to tell me what she knew. It was not until after she left this plane of existence that I realized I still had questions. She gave me little hints. I did not recognize those for what they were. Many months before she left, she spoke to me about not being here for her next hair appointment. Her timing was off a little but I remember at the time thinking, you are wrong dear. Most smart men know that their wife is rarely wrong.
“… I went in seeking clarity
I went to the doctor, I went to the mountains I looked to the children, I drank from the fountains We go to the doctor, we go to the mountains We look to the children, we drink from the fountain Yeah, we go to the Bible, we go through the workout We read up on revival, we stand up for the lookout
There’s more than one answer to these questions Pointing me in a crooked line And the less I seek my source for some definitive (The less I seek my source) Closer I am to fine …
Songwriters: Emily Ann Saliers / Amy Elizabeth Ray
Adjunct_Wizard 