My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
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.
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.
I am not a huge sports fan, so, should I write or should I read? On that day I elected to read after hanging the new calendar on her office door, putting away most of the Christmas decorations and helping her finish a batch of cookies. It was a pleasant two hours of downtime before preparation for church.
Church was sadly uninviting as the pastor is out with illness due to covid. We are back to socially distanced mask wearing in a gathering of perhaps eighty people in a building that holds 450 but has not experienced that level of participation for many years prior to the whole pandemic pandemonium.
So today is January 9, 2022. I checked with Cheryl and it is time for the three kings to go back to the orient. But the storage area is actually slightly west of where they are displayed this morning. Balthasar, Melchior, and Gaspar (or Casper) are their names according to Western church tradition. Balthasar is often represented as a king of Arabia or sometimes Ethiopia, Melchior as a king of Persia, and Gaspar as a king of India. So, maybe, the fact that the bucket and the storage area is west makes little difference. It is a much shorter walk than the guy going back to India.
Guys chasing a suspected super nova…
The past week has been a bit of a trial. Cheryl has been having trouble sleeping through the night. It is a common issue with Parkinson’s disease. As a consequence during the day she is easily upset, occasionally moody, somewhat apathetic, quick to anger and often fatigued. The rivastigmine was making her nauseated so it was discontinued. She has been taking quetiapine (Seraquel) and in working with her nurse practitioner we are slowly changing the dosage and timing of that to help with sleep. It is an annoying process but it seems to be working sort of.
Last evening we made blueberry muffins for Sunday breakfast today and for awhile she sat with me to watch our used to be favorite CBS Sunday Morning show. She has not sat and watched this show with me for any length of time for many months. It used to be our Sunday morning activity after returning from church.
Times change and I suppose I am attempting to preserve as much of the routine as possible while we travel this Parkinson’s journey. I do miss watching various pieces with her and commenting about it.
As her memory, creeping dementia and other odd behaviors appear it is incumbent on me to not correct her or even explain those behaviors to others. Her friends all know what she is dealing with. I do not have to remind them. People will show kindness or not. Total strangers can be remarkably kind and generous. Maybe because Cheryl navigates with a cane in her hand.
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.
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.
A friend of mine put this on Facebook. I am certain that he put it there as bait and I bit. COVID is of course short for CO(rona) VI(rus) D(isease). The nineteen typically tacked on to the end is to demark 2019 as the year when the virus was first noted in Wuhan, China. The individual who first started the game apparently is displeased with the poor initial discussion of masks, personal hygiene, and vaccines.
This posting on Facebook is intended to rile folks up. I feel the pain myself. Having finished with my second booster shot of the Pfizer vaccine a week ago, I am elated. The previous leader of the free world could have celebrated his and his wife’s vaccination before they left the White House. He did not. The event was so low key that it was only reported after he flew to Miralago to resume the life of the rich and famous guy that he is.
I used to play this game when I was still working full time and some one would use an acronym with out first explaining what the term stood for. The implication being that if you did not understand the term you were not on the inside. I always made me laugh. If it showed up in an email I might ask an innocent question using my made up acronym. My favorite is SMART (Simply Magnificent And Recognizable Talent) goals. I think timely is a cop out. What does timely mean?
Think about it. Try UNSMART. (Uninformed New Sheep Mainly Are Really Trumpublicans) (political division)
Let your mind run wild. It is okay to use small articles and the verb to be in any answer. Be mean or generous, politically correct or not so, kind or not. There are no rules.
Over time some acronyms have become actual words (laser) and some words have become acronyms (smart). Language is fascinating.
Parkinson’s disease sucks but then a friend will send you down a rabbit hole with diversion of some sort for several hours of mental gymnastics. Thanks, friend.
I will forever treasure this picture. Last year in Cincinnati, Janice (seated) came to help Cheryl with a fund raiser for Parkinson’s disease called The Sunflower REV it up for Parkinson’s. In this particular picture — once in a while I get a good one — they both have their smiles on. The single most disappointing thing about Parkies is often-times they loose their smile. They look stiff and glum.
Janice passed away early this morning. She had contracted Covid-19 from somewhere and the combination of diabetes, Parkinson’s disease, Myethenia Gravis, maybe a little COPD did not allow her to recover from the infection. We will miss her greatly.
She and her husband chased jobs to Florida many years ago. Next year they would have celebrated 50 years of marriage together. When the covid pandemic turned off our plans for a Golden wedding anniversary celebration this summer, they were quickly modified into a joint celebration next year, when, hopefully it would be safer. Alas, it is not to be.
Covid-19 is a peculiar virus. It is a predator that seems to be culling the society of the weakest and most vulnerable.
It is all part of His plan, but, today I am disappointed in Him and any plan that He has. Mere humans cannot understand God’s plan for us all. I cannot find solace and comfort. Not yet. It is too soon. First my Brother and now Cheryl’s sister. It is too soon. The loss is too strong. Perhaps later.
Visit in October of 2019
In the fall last year Cheryl and I visited my brother who was recovering from illness and one day we drove across the state to have lunch with Jan and Bill, their son Justin and Cheryl’s cousin Mary Kay and her husband Jay. This picture is from some Friday’s somewhere in Florida.
The trip was taxing to Cheryl. We drove. It was my choice to do travel that way. It allowed us more flexibility. I felt that I could abandon our plans at any time based on Cheryl’s mood, physical well-being or whatever came up. We stopped often and spent no more that six hours on the road each day.
McDonald’s respite
In a previous life I used McDonald’s as rest stops. Even if I was not traveling on an Interstate highway, their restrooms are generally pretty clean and the staff is generally friendly. Their corporate policing of properties, even franchise properties, is their reputation. They lose business if it is not up-to-snuff.
Today, after the news of Janice’s passing, I was elated that we had taken the opportunity to go and visit. We had not done so previously. I am saddened by the fact that we had not done so previously. It would have been easier pre-Parkinson’s. Life, employment and other unimportant things got in the way, so, we did not visit until last October.
I am gladdened by the memories. An animated lunch conversation and a visit to see Justin’s blow up decorations for Halloween were the highlights of that day.
Booowooohaha – scary all hallo’s eve – not so scary with the sun out.
Our house is sad today. Janice is with her mom and dad. There is a gap in the family that cannot be filled yet. It will take time and love to fill that gap.
When my brother passed away a couple months ago, I felt this same gap. I have been calling my sister more. There is only the two of us left from our original family.
Since Cheryl’s mother passed away two years ago her family started random gatherings of the siblings for birthday celebrations. The baby is now sixty years old. Cheryl has taken upon her mother’s activity of sending a card to children, grand children, cousins, nieces and nephews for birthdays and anniversaries or simply to say congratulations. She is a valuable resource as to what to celebrate. This is a good thing that they have started before any of them has passed away due to illness. Now the first one has died. Even though covid makes it dangerous for some to gather, perhaps it is time wear our masks and celebrate Jan’s life.
I am glad that I knew her. She was a wonderful loving mother to Eric, Kevin and Justin. A loving wife and caregiver to Bill her husband. A generous and loving sister to Cheryl, Nancy, Debbie, Dan and Ken. She was a loving and generous grandmother to Brandon and Olivia.
Adjunct_Wizard 