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.
Wednesday night dinner out was a favorite place Bacall’s Cafe. She had a half BLT and a salad. I had pot roast, mashed potatoes and vegetables which turned out to be sauteed zucchini. It was a regular night.
Cheryl spent a great deal of the time trying to get her right earring in. She never did. The waitress tried to help but was worried about hurting her ear. Many years ago when she had her ears pierced the incompetent piercer did not get the hole straight through. For many years she was able to make it work. These days her PD fidgety motion makes inserting the post or pin often unsuccessful.
Eventually I convinced her that no one cared and she should put it in her purse and try later. We talked about different things none of which stuck with me. She did not have any odd topics to talk about. It was a dinner conversation that lulled me into forgetting about her PD. We teased each other as old married people do.
I remarked that none of her family came to her family gathering at her cousin’s house. She replied that maybe since they had been at our niece’s wedding the previous weekend they were doing other things. Perhaps she right, as family gatherings go, the clans tend to stick together with not much intermingling.
We saw several old acquaintances at other tables and booths. It was Wednesday afternoon and the old folks were out having dinner and a drink or two. Talking about this and that. She was having a good day for the moment.
When we got home, I settled into my recliner to watch a bit of news and for Nature to come on our local PBS station. She went into her office to look at the clutter and maybe check email. About an hour or so later as I was starting to read my book and tigers of India were saved for now, she showed me some pictures that she thought were of my sister Laura and her family from a trip out west. (POOF) she was off in PD la la land.
The pictures have little to do with Laura although she is in some of them and nothing to do with any trip out west but Joyce and Rob, our family’s only westerners, are in them. The pictures are of two Christmas celebrations twenty-five or so (maybe thirty) years ago.
Cheryl particularly looks forward to visiting with family and friends. She also is close with several women from grade school. They refer to themselves as the Clementines. Lately they have been meeting via Zoom because several of them are taking care of folks that have immunodeficiency in some way. Cheryl really misses the face to face interaction they used to have in a restaurant somewhere.
Today her brother Dan brings lunch. They will sit and talk about family things.
A few days ago many of her siblings gathered at a restaurant to celebrate Dan’s birthday. I was there. I refer to myself as Cheryl’s personal Uber driver but lately I pay closer attention so that I can help her remember what was said and who is doing what to whom. It is not a task that I relish. It is what I do.
As a family group, their generation is beginning to die off. The second oldest died last year in the chronavirus pandemic. They seem to talk to each other more about their personal lives. Most of them are very quiet about that. The youngest talks often about what is happening in his life. He is a new grandfather and soon to be again. All of them live locally within an hour drive.
Our two families deal with grief and loss very differently. My sister and I talk on the phone more often than we did when Mom and Dad were still alive but even so, we might go weeks without doing so. Our older brother and the oldest sibling died last Spring. Our core group has been reduced to two. My sister and I are separated by two thousand miles and three time zones.
… And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.
A few minutes ago I went in to check to see how she was doing. She told me that Tari picked out some really cute birthday cards this time around. (Tari was not with us shopping for cards yesterday but that is not important.) She is working on the August birthday cards. She had just put on her favorite Rod Stewart CD on the player in her little office. This song came on. It happens to be one of my favorites. This disease of Parkinson is slowly taking her from me and I long for the old days.
What good are words I say to you? They can’t convey to you what’s in my heart If you could hear instead The things I’ve left unsaid
Time after time I tell myself that I’m So lucky to be loving you
So lucky to be The one you run to see In the evening, when the day is through
I only know what I know The passing years will show You’ve kept my love so young, so new
And time after time You’ll hear me say that I’m So lucky to be loving you
I only know what I know The passing years will show You’ve kept my love so young, so new
And time after time You’ll hear me say that I’m So lucky to be loving you Lucky to be loving you
It is a lament of times passed and an optimism for the future. I often struggle with that last part when this disease of Parkinson appears in the middle of the night or I am researching incontinence products on various websites. On melancholy days I think about the preParkinson times. It helps to not look back with longing for those experiences. Time only moves forward. I am grateful to have had those experiences with her. I am grateful for the times we have yet to experience.
Do I wish she did not have Parkinson’s disease? You betcha.. Cyndi Lauper has a song that might be more familiar with a similar sentiment. Once in a while I get very nostalgic for our previous life. I let it roll over me in waves. It is helpful.
Tonight’s menu is Salisbury steak, rice, green beans and corn. I am baking a small cinnamon crumble cake for dessert. These are some of her favorite foods. I am following the Dinner for Two cookbook by Betty Crocker which is her favorite cookbook. She will compare her version before our kiddos came along to my version this evening.
Hopefully the hallucinatory little girls that often populate our home in the evening will not appear and we can rest later.
She is looking for earrings after she awoke from her nap.
Several years ago we began going to a favorite local pizza store one night a week. We tried different days and over time we landed on Tuesday as the day we went out for pizza. It developed into a tradition as my youngest son would say. It became known as “Pizza Tuesday”. Sometimes in conversation a friend might say, “Can we get together tomorrow?” I might reply, “No. That’s Pizza Tuesday.” It became sacred. We did, however, invite others to our favorite pizza store to share. Occasionally one could see local celebrities such as one of the local colleges’ basketball coach there snarfing pizza like the rest of us fans.
When we sold our old house and moved to our condominium we invited our neighbor and friend Jane to our Tuesday dining adventure. It became a time to chat and catch up. Pizza Tuesday as a tradition became even more ingrained in our routine.
The pandemic pandemonium stopped much of that activity. At first we carried out (took away) our pizza from our favorite pizza store and moved our tradition home to our dinning room table. That worked well for a bit. Over a period of approximately fifteen months we experimented with pizza that was not only pepperoni. We added vegetables and fungus. We tried other sauces from the menu. We tried other pizza stores. We tried take away from other food emporiums. We expanded our flavors.
As the pandemonium eased Cheryl and I slowly began to visit restaurants with few or no utensils or menus. I learned how to use the square bar code thingy that restaurants pasted to their tables, walls and doors. A restaurant with paper menus became a favorite when previously it was not a favorite. Victoria, a young waitress at the favorite-not favorite, began to recognize us by sight. We came when she was working often. We began to look for her and tease her a bit about her constantly changing hairstyle. There was a reason to go there beyond pizza.
Socialization is a strong motivator. I worried a bit for Cheryl’s safety and health but I recognized that for her it was important to simply get out and see people other than me. Even in a pandemonium, one must live. Neighbor Jane who is immune-compromised remained isolated.
This past Tuesday evening we went back to Pizza Tuesday. The three of us went to yet a different pizza store. Perhaps, for us, THE PANDEMONIUM IS OVER! Prior to this event we made a list of various foods both home cooked and restaurant dishes that we would like to have. Jane aimed this discussion specifically at Cheryl. We will read the list and tick them off one by one. And I hope make a new list at the end of this list.
We are all three vaccinated. Not one of us has bought into the disinformation distribution on social media. Eating out and conversation provides all of Maslow’s hierarchy in one way or another. This chart is similar to one I saw many years ago.
An old psychology chart that I have not seen for awhile.
I have never really been a car guy. The first car that I owned was a 1956 Chevrolet not a Bel-Air, the other one. Two tone white over blue. I bought it from my grandfather for $100 in 1968 or so. Mom insisted I pay grandpa for it. I am pretty sure he would have given it to me. I gave him $100 of my hard earned cash in cash from random jobs.
I loved that car. It had a steering wheel like you see in buses today. It was huge. A friend of mine and I rebuilt the engine. Replaced several of the valves. It was a good experience many kids today have not had. Spending your own money. Fixing something that you can use for yourself, some work that you can be proud of and show off. I was seventeen then. Life was good. I was living on Dad’s dime and gave my cash to grandpa.
When we got married, my wife had purchased a 1969 light blue VW beetle as her first and for many years of our marriage, our only car. I do not have a picture. I wish I did. I loved that car too. In its later years you had to lift your feet up if your went through a puddle. The floor pan was famous for rusting through on those neat old cars. We owned it until about 1985 or so. It is the only car other than the ’56 Chevrolet – not the Bel-Air, the other one – that I ever personally worked on.
This is the wrong color but it brought back memories. And it has been jazzed up more than ours was. A few weeks back I visited California to attend my nephew’s wedding and visit with my sister. Good memories of the trip and this picture of an old VW made it worthwhile.
High school friends — Paul and I met in high school. We met probably in homeroom of our freshman year. My memory is vague on that account. Nevertheless we spent a great deal of time together in class. His surname was one letter off of mine, so often we were seated side by side in the back of class. Occasionally we were seated so that I was behind him in class and in one instance with a teacher whose last name also began with W, we were side by side in the front row. Teachers like alphabetical.
Paul was always nearby. I could touch him if I needed to do that. Sitting behind him in class was a plus. I was tall and grew taller in high school. He was taller than me throughout our high school years. In that one class I could hide if I wanted. It did not last long.
Purcell High School
We were not competitive in high school just good friends. It is rare that a friendship develops and remains throughout two lives in which being apart is as though it was not when those friends meet. Their meeting may be often or seldom but when they meet once more it is as though no separation happened. Our friendship is like that.
Through life our worlds separated and re-connected in a celestial mystical dance. We went to different universities. We got married. Magically our wives like each other. Raised families. Followed our own life paths. Attended our kids marriages. And as the families grew and spread out, we met up every few years to vacation together.
Cheryl’s reaction to an adjustment in her Parkinson’s medication destroyed our last attempt to vacation together. The disease is adding an element of confusion, hallucination and dementia as it progresses within her.
In the fall of 2019 we successfully made a trip to Florida by car to visit with family. After the pandemonium of COVID, I hope to make the trip north to visit Paul and Cathy. Cheryl occasionally talks about that and before I get too old, I suppose we should try.
With wonderful friends we had a wonderful, peaceful visit yesterday. We had long conversations about totally random topics that included children, grand children, the stock market, parents, food, diets and onward. Thinking about it now after the fact, I do not recall each individual topic. Our conversation merely flowed from one thing to the next. Occasionally it stopped. We were comfortable with listening to the cicadas. It was a pleasant afternoon and Cheryl had a peaceful sleep filled night afterward.
In St. Bernard, Ohio the little town surrounded by a bigger town in which my wife of fifty-plus years grew up and left at an early age, they had a simple recognition ceremony of those who were killed in the two world wars, the Korean conflict, the Vietnam war and the current excursions into Iraq and Afghanistan. It is a day of remembrance. Sometimes a day of sadness and grief.
Last year the ceremony was non-existent due to the COVID-19 restrictions. This year it was poorly attended. There were perhaps fifty people and half of those were participants.
A DJ played music before the gathering (including the green beret song), the appropriate marches for each branch of the armed forces (the new Space Corps was not included) as the particular flag was raised and “Hang on Sloopy” before the Ohio pennant was raised. “Hang on Sloopy” is the official rock song of Ohio. The Smooth Transitions, a quartet singing group, did a great job singing “Grand Old Flag”, “God Bless America” and “Our Land St. Bernard”. It had the feel of an outdoor religious service.
Wreathes were place by several civic groups to honor the fallen servicemen. The fire chief of St. Bernard read the names of those who died and as he was doing that a small flag was placed for each man at the foot of the small rise that is topped with flag poles and a monument.
Cheryl was feeling good today so I took her to attend. Afterward we drove around St. Bernard. We drove through St. Mary Cemetery to view her mother and father’s grave sites. Later we drove through Gate of Heaven Cemetery where my parents and Aunt Margaret Dwenger are buried. My mother’s older sister made a career of the Navy and retired as a Lieutenant Commander. She was never married.
It is Memorial Day. It is a day of remembrance for us all.
There is a low whirring (whoring?) hum in the air. I had forgotten that part. The birds are excited. I remember that part.
Not our Elm but similar
At our old house when we bought it in 1980, there was a huge American elm in the backyard. It was in the center of a square of yard about eighty-five feet on a side. It did not crowd any buildings or other trees so over time it had developed that beautiful umbrella canopy. We moved into the house in February. I remember thinking, wow that is a neat tree. At the time I was unfamiliar with elms and dutch elm disease.
When spring came it leafed out in a fashion similar to the picture below. The tree was dying from the back as viewed from our kitchen window. We got a couple of tree wizards out to look at it and decide what to do. The only solution was removal. It is sad to remove a tree that size. The tree was about sixty years old. The person who planted it was an optimist and we intended to cut down their legacy.
Summer of a dying elm tree
After the tree was removed we had a stump about four feet in diameter and about chair height that for a few years the kids enjoyed by having tee parties and building ramps to jump bicycles off of. The stump was in a level area at the bottom of a long downhill driveway. I watched from the kitchen one day as our son came flying down the driveway on his bicycle, went up the ramp and failed to stick the landing on the other side in the grass. Certainly a learning experience about Newton’s laws.
There are lots of Newton cartoons. I like this one.
We planted a cherry tree hybrid graft at the end of the driveway after we removed the elm tree. Fruit seemed like a good alternative. I had started a vegetable garden on the far side of the yard and left the center for the kids to play in. It was a grand space for play.
About six years later the cherry tree was perhaps twelve feet tall and producing enough cherries in a season that I was protecting the cherries from the birds with netting. The cicadas came out that year, looked around and said to each other, “what happened to our tree?”. They made the long trek to the maple in the back and the cherry tree at the foot of the drive. From the perspective of the kitchen window, it was as though the grass in the back became liquid and was flowing away from the stump. It was an incredible sight.
The birds showed up for the cherries but ignored the tree fruit. There was a plethora of protein walking around in the grass hunting for any vertical object. Robins ate so many bugs they needed a runway to take off. It was amazing to watch.
The female cicadas did a good job of pruning the small branches that come out where the tree blooms and then fruits. The year of the cicadas was the first year we harvested enough fruit to make pies and jelly. The following year was better. The tree produced even more fruit than previous years. I attribute it to the pruning done by the lady cicada society.
We moved from that house to our little condo about five years ago. From our screened in back patio area I can hear the whirring sound. It is raining a bit and will do so for a couple hours according to my weather app. The bugs have not whipped themselves into a feverish sexual frenzy yet. They will later.
Over time the moles have herded them into just a small area near our back porch. Some climb into our screened in area. I pick them off the screen one by one throw them out the door. Most are not instinctive fliers. About one in three flaps its wings and buzzes off to the trees in the back when I throw them out the door. I shout encouragement to them as I throw them out the door. I explain Newton’s laws but they do not listen. My wife does not like bugs. For a couple weeks I can have the porch to myself.
One got most of the way to the trees but, sadly was snatched out of the air by a hungry bird. Newton did not matter. Its genes will not be passed on.
Today is Cheryl’s birth date. She was born on this date many years ago. Many years before we discovered each other in life; God, fate or karma intertwined our existence together in life. It is meant to be.
Yesterday we celebrated. It was a wonderful party. She remarked as we drove home from the park, “That’s the best birthday I’ve ever had. Thank you for putting it all together.” I thank Anna, David and Scott (and Mavis, Eric and Melissa). I had very little to do with it.
Back in March or April when it was starting to warm up and we were both two weeks past our covid vaccinations. Cheryl was anxious to party with the kids and grand-kids. I hopped onto the Hamilton County parks site and reserved a shelter for her birthday celebration. Good time.
She put on her year old Nike walkers. It was one of those sunny spring days that says fresh and new is what we are up to today.
Where should we go? – c;
Let’s go up Troy. I hate to go through the dip.- p;
Okay. -c;
There is a quick look around and search for keys and other kit.
What’s the weather like? – c;
Warm. Probably no sweater. – p;
Are you sure? I thought it was supposed to rain. – c;
Nope. Sure. Look. – p;
He holds the door to the front porch open.
It does look nice out. – c;
Out the door and off on two miles or so.
Cortelyou (core-tell-you or cortil-you, your choice) avenue is named after John Cortelyou who either developed or owned that part of Pleasant Ridge. On plat maps the area is referred to as the John Cortelyou subdivision. John and his wife Martha are buried in the Pleasant Ridge Presbyterian Cemetery on Montgomery. The pavement is narrow and parking is only permitted on the west side of the street. The part of the street that they live on if allowed to connect to it would make an acute angle to Ridge road. Troy avenue which meets Cortelyou just before it drops down a short incline towards Losantiville road makes the base of a right triangle with Ridge and Cortelyou.
Troy avenue meets Ridge road precisely where Ridge curves to the right to head south again after coming up the hill from the little valley that holds Amber creek. The short street meets the thoroughfare with an acute angle to the left and a right angle to the on the other side. There are mostly single family houses on the south side of the street and mostly multifamily buildings on the north side. It is a pleasant street. Narrow along its length but bright and sunny with few large trees along its length to obscure the view towards Ridge road.
Ridge road is poorly named because it never travels along a ridge in the earth but rather perpendicular to several. It would be more aptly named Over the Ridges Road but, no doubt, this name was rejected when the names were being given out or the makers of maps became tired of precision and in their gay manner shortened the name to Ridge rather than ‘Over the Ridges’ or ‘On the Way to Ridge’ or even ‘Up to the Ridge and down Again’ road.
As they walked they spoke of their surroundings and of people they knew. He came with her as he usually did on this day to get to know her better. They were empty nesters now. All three of their children were grown and moved away. He did not often want to simply walk around the neighborhood but she was okay with that she pushed him to get out of the chair and move. It is a nice day. Let’s go.
They took the acute angle at the end of the street and walked north in front of the houses that were originally built, as the story goes, to show off the type of housing available to be built in nearby Norwood. No matter the back story these are beautiful old houses set far back from the west edge of the street. Some well kept. Some developing creeping overgrowth. An earlier majesty and grace left for some later owner to recover and let the homes bloom again.
At the top of the rise where the road dipped back down into the valley, they crossed into the neighborhood on the east side of Ridge. Through a small dip in the topography and up toward Grand Vista. Grand Vista climbs a hill to the left as they walked toward Montgomery road. This road is known as the Pike by the older generation.
At this point the conversation is interrupted to ask, up or not?
I think not -c.
Okay. – p.
Following Grand Vista to the cul de sac and back out will add over a mile to the walk. One can turn a mere walk into a trek in this fashion. They continue to Montgomery Pike.
Turning south on Montgomery they headed back into the business section of the old village of Pleasant Ridge just one of the ridges that over the ridges road went over in its meandering trail south toward the old village of Oakley. Near this turn anchoring one end of the business grouping is the Pleasant Ridge branch of the Hamilton County Public Library. They paused for a moment to allow a young mother to organize children, bicycles and a stroller as the family left the library with their booty.
It is a magnificent day for a walk around the neighborhood and they are enjoying themselves. The temperature is warm. The sky is the shade of pure blue that appears after a spring shower washes the air. The daffodils are near the end of their reign but stubbornly hanging onto their beauty as early tulips attempt to shoulder them out of view.
As they near Kincaid Rd. another key decision point he asks, Kincaid?
Yes, she replies.
They turn north on Kincaid on the west side of the street. During this entire walk p. has moved to her right or left to place himself between her and the street. In his own mind it is proper for the male to position himself between the female and the passing traffic. He is not certain where this ingrained behavior has come from. He merely knows that is what he needs to do. So, he has placed himself on her right side as they walk down the street.
…
As they walk he notices that occasionally she struggles to keep with him and this causes him to slow a little and look down at her feet. The walk is narrow and he thinks that perhaps he has hogged more of the width than he is entitled to. As he watches she is not lifting her left foot always. She is dragging it in a limping motion.
Being a man, he teases – are you having a stroke, dear?
She replies with – I don’t know. My leg does not seem to work right.
They slowed more and he held her hand as they walked. She seemed to be struggling to maintain any sort of normal gait. When they got to Harvest they turned and headed back home.
…
I always remember Cheryl’s initial struggles with Parkinson’s this way. She remembers a different story. About this time she was a big deep water aerobics fan and participated in a class at the YMCA about three times a week. Later on we joined the Jewish Community Center and she did deep water aerobics there.
If you ask her she will describe going in circles in her water aerobics class when she wanted to go straight down the pool. She probably did that but what I remember most is this little walk we took one day many years ago.
Adjunct_Wizard 