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.
Pfizer is conducting further trial testing of a mRNA style flu vaccine. Their ad popped up on Facebook a few weeks ago and I answered it.
The first visit about 3 1/2 hours long was taken up with health history and all the normal blood related questions. After the initial interview an official doctor, he had a stethoscope draped on his neck, came in to ask many of the same questions. Good cop, Bad cop? I think that we were waiting for the vaccine to melt. A third person came in to train me on how to label nasal swabs that I needed to do if I felt like I caught the influenza virus from somewhere. Eventually another came to a blood draw. And another came to inoculate me with the double blind test substance. Every day in the evening for 7 days I have to report any and all symptoms on an app. I waited 30 minutes after the jab to make sure death evaded me.
I returned home to the cookie mess. Cheryl had decided to make more Christmas trees but had run out of gas, strength, linear thinking and wherewithal to complete the cookie dough. I guessed there was not enough butter and no flour in the mix. I saved the cookie dough but put them in the oven for too long. Probably should have been 10 minutes not the 13 that I had selected because I thought it was 15. The cookie expert (Cheryl) always says, set the oven for a couple minutes short and look at them. (The recipe words were nowhere to be found.) Oh well, I like crunchy cookies. She likes soft cookies which I think are under done.
Afterward Cheryl recognized that she could no longer make cookies on her own. Or she at least expressed it that way to me. Today she probably does not remember that at all.
In my never ending search for a good day for Cheryl, this morning I went to a little donut shop near us and bought a dozen from Maggie. I had not purchased donuts from Maggie for some time.
Linda was coming over today to sit with Cheryl. I was intending to ride my bike around Lunken and the Ohio river trail. I asked Linda what kind of donuts she liked last night. The chocolate iced ones are hers. I sent this picture to her in a text this morning. She appeared early.
The donuts were only hours old. Ron makes them overnight.
Donuts used to be $11 a dozen with coffee. Today they were $14 a dozen without coffee. That is twenty-seven per cent more for you math weenies out there. It might be more considering the coffee. Inflationary pressure has finally come to donuts. Gasoline prices are down. Donuts are up. Darn.
I went to ride my bike. When I had returned Natalie was almost finished cleaning our little condo.
I made chicken Parmesan for dinner. We went to a little ice cream shop for dessert.
This is such a good story I am unsure where to start. Had I been more alert to how Cheryl treated this book I could have foreseen the difficulties that eventually came to her and became much of my daily life. But seeing how she treats it now is unimportant and I flatter myself into believing I could helped her if I had been paying careful attention at the beginning.
About three years ago – certainly prepandemic – Cheryl was struggling with her birthday card organizational techniques. She had several old books of names. One of these was left to her when her mother had passed from this life to the next. When a new month was approaching she would collect these to her in her office in the evening to make a list of folks whose birthday was coming to buy cards.
When her mom was still alive she would take Elaine to the Dollar Store to buy cards to send out. She took this over in time for her mother and eventually kept it up after Elaine passed away. She did this, of course, in addition to her own birthday card list. So, one evening I noticed she had several old handwritten books that she was looking through to discover whose birthdays were coming next month.
She had entered much of this same information into an Access database that she had created during her working career to help her and her mom keep track of things in an organized and businesslike manner. Cheryl was an extremely organized business woman. The most disheartening thing for me to watch as this disease progresses is her loss of organization and control. If the disease was merely physical it would, I think, be easier to deal with.
Nevertheless I put on my engineering hat to help with different methods to enhance and at the same time add ease to the organization of the birthday cards. In a second career as a high school science teacher which never completely panned out, I discovered a wonderful organizational tool that teachers use and might very well be adaptable to Cheryl’s needs. Teachers use a weekly planner to help with organizational tasks and as I discovered with my small experience, to keep track of how far behind you are with the course material. Usually these are dated with the year but at Staples I found a wonderful version that in addition to having only two days per page was lined and printed in a 8.5 by 11 format had no year printed. It could be a yearly calendar of birthdays, anniversaries and other information without concern for the year or day of the week.
The doomsday algorithm would give you the day of the week. Look it up. It is pretty neat.
She had been struggling with organizing the birthday cards. I suggested she use this yearly planner. In the store, she agreed that it could be a useful tool to organize the activity. I was proud of myself for finding such an elegant solution to her dilemma. Being the ever helpful hubby I produced from her Access data a list that I could put into Avery’s online printing tool and produce the information for the dates that were known. New information would come along with use and could be added by hand as the years evolved.
Almost a good idea but my idea therefore NIMBY and NIH reared their ugly heads in unison. And I, not to be defeated, began to defend my method to a woman who spent her working career in computer databases and systems analysis, as she, slowly crept into memory loss, confusion and dementia. What a hoot! I completely and totally missed the AHA when it went by about two years ago.
How to help without helping? I continued for many months to reconsider and think about how to make the Big Black Book useful to her. In her old multi-book system she looked at a single page to discover who had a birthday that month. An index my engineering mind shouted at me. You forgot to make an index. I thought about that for awhile and realized that the planner was organized by month, not day-of-the-week, not year, only day of the month mattered. It was self indexing. I was at a loss as to how to fix her thoughts.
I quit concerning myself with instructing her on how to use it. I just rolled with her confusion.
Over time the preoccupation with getting out the birthday cards dissipated. Other thoughts of how to help her organize it left me. I became an observer. She always tells me, if I don’t do it myself I can’t improve. She is right. I am merely her aide.
I woke up this morning and there on my Facebook feed
Was this beautiful expression of love on our anniversary
It was made by my friend Edie down south
God spoke to her, we never talk by mouth
She has this exquisite talent she is sharing
she posted this on the day of our pairing
Edie, you did not know
that fifty two years ago
Cheryl and I were wed. Thanks for your art.
This day is special, thanks for the great start.
August 29, 1970
It was a seriously hot day. We were dressed to the nines. We were skinny. Life was in front of us.
Frank, I know you are not with us any more and have not been for awhile but I suspect that like Google and Facebook you can watch us, so here is what I want to say to you.
Thank you ever so much for marrying Linda all those years ago when we were young. These days she is an immense help to me and a good friend. As you are aware, her simple act of kindness to Cheryl and me comes in the form of being with Cheryl while I go do something else. Lately that has been riding my bike around Lunken Airport.
When she first started doing this for us I had signed myself up for a care giving class which put great emphasis on making sure that you take care of yourself as a care partner. I asked if Linda could be with Cheryl during those class times and she agreed. I took the “take care of yourself” message to heart and make an extra effort to find help so that I can be on my own for a couple hours.
Since I am seeing Linda more these days, prior to this as you know we met for pizza Tuesday maybe four or five times a year, I think often about our conversations and ponderings in Aunt Dorothy’s kitchen. Do you remember some the questions we posed? How does one determine if sour cream is bad?, for example. I had not thought about it at the time but it was the same sort of thing that would puzzle my dad and I am guessing his brother, your dad. Sometimes small people would run through and we would wonder who they belonged to. Those are good memories. That entire older generation of our family is gone now. Aunt Bert passed away last year. But you know that. Have you talked to her yet? Does dementia go away when you get to heaven?
So, here is a couple questions for you. How are you doing in heaven these days? Is heaven a no smoking area? Is there a smoking section? Or did you give that up?
Did you know grapes are better when they are frozen? I learned that from Sarah’s Luke.
Ray and Shirley passed through town a few days ago. We gathered at Sarah’s house with as many folks as we could conjure up. Not all of your kids were there but some were. Betty and Herb came from Brooksville. Andy was not there but Kyle and Julie were. It was a great time. Ray took a picture:
Tim Scott has a new book. It has just been published so he is making the rounds promoting his new effort. Perhaps merely because he is intelligent and half of the Senate representation from South Carolina but probably also because he is black and Republican, the CBS Morning newsies cannot resist asking questions that have little to do with his book.
To a question about whether he was considering a run for the Presidency of the U. S. he responded, “… You shouldn’t worry what’s next if you haven’t finished what’s now.” He gets my new life philosophy.
Carpe Diem. Latin for seize the day. I use it to end my little posts about various issues Cheryl is dealing with but it is also a reminder to me to stay in the present. Do not linger in lamentation over perceived losses. Stay focused on the now. But do not get so narrow minded that everything has to be “just so.” It can be good enough. (An engineer would add – for who it’s for.)
Do not become anxious about the future unless you are making a list of stuff to take care of before leaving on an extended trip. Worrying about what is to come is of no useful purpose. Plan and if God laughs at you, laugh with Him.
Carpe Diem to me also means stay in the moment. Enjoy this moment. Take a selfie if you want to have a remembrance in some future time. I personally do not understand the selfie thing. Most of the selfies I see on Facebook do not give one a sense of where one is. Occasionally there is a glimpse of beach or Mickey Mouse ears but often the background is some drinking establishment which could be anywhere in the world. I have also noticed that the camera aficionados in my family point the camera away from themselves. Me included.
Cheryl found this image of my youngest sister, Laura and her husband Jeff. They look very happy. Laura looks radiant. They are enjoying the moment. I maintain it is impossible to look this happy and not be happy in your soul.
This picture was made pre-smart phone. It is therefore not a selfie. Many years ago I visited with my west coast sister in Seattle. I was working on a job farther north in Vancouver BC. Walking down Market St. I was nearly clothes-lined by some woman with her selfie stick. It was the first time I had seen a selfie stick. (Oh, I have wandered off into the weeds.)
It is easy to tell when Cheryl is feeling good. She will start cleaning.
My go-to cleaning person is my niece, Natalie. She comes over for a couple hours every other week and dusts everything, mops floors, runs the vacuum.
I tease her about touching all my pictures and stuff. I do not watch her every move. I pick up all the towels and throw them in the washer.
But at other times, when Cheryl is feeling good she cleans for awhile. I suppose it makes her feel useful. When we were younger and she was without parkinson she would clean at random intervals. I think it was a calming mindless activity to her then and is a familiar activity now.
Anna was looking for ideas about what to get her mom for her birthday in May of 2022. I suggested a box of blank cards to send for any reason. Cheryl has always kept greeting cards that are sent through the mail for fund raising purposes from various religious and chronic illness organizations. Some would be sent to her mom when Elaine was still alive. Some of these are still in residence in Cheryl’s office.
There is a small green box shaped like an old country mailbox near the phone in which these cards used to reside. They are no longer there but are spread here and there amongst other paper and chaff in her office. I had hoped that Anna’s present would take up residence in the mail box topped box but that did not happen.
In mid-April of 2022, I suggested that she should make a list of the May birthdays and we would make a trip to the store to get some cards to send. The idea of making a list is hers. She readily agrees with this idea but as her Parkinson took hold of her cognitive centers she is unable to do this.
A few months back her engineer husband suggested that rather than a list she should write each name on a post-it note and as she selected cards in the store, she could put the post-it note inside and she would know who the card was for. Later when she wrote the card and addressed the envelope she could note what date she wanted to mail it and stick it to the front when she sealed the envelope. That solution met resistance because of the NIH factor. (not invented here) But over time she adapted it to her way and used it for awhile.
In April I helped her make a stack of post-it notes with names and we went to the store for cards. Few of those cards were ever mailed to anyone.
In May I waited to see if there would be a panic mailing of cards. May came and went.
Our daughter-in-law Mavis’s birthday is the 1st of May. Hers was the only May birthday card sent. How do I know? In a previous month there was panic as Cheryl realized she had forgotten where she had put the stamps. I now keep track of the stamps. I often have written about her punding. Sometimes she will pund stuff into obscure places. We all do this – not punding – but set things down in obscure places. With PD it is merely harder to find out where it was parked. The stamps turned back up a week or so later after I had bought a new roll.
Cheryl’s birthday is in May also and her brothers and sisters often gather for a “sibs” dinner to celebrate such an event. These pictures are from that gathering at Gabbey’s cafe.
The birthday cards acknowledgement of the family birthdays seems to have been forgotten. It is probably another nuance to he loss of sense of time, calendar, day, week. Our son Scott’s birthday is the 6th of June. We were at our daughter Anna’s house on his birthday. Anna asked her mom whose birthday was today. Cheryl looked at her with a confused look.
I felt sad about several things. I have been writing significant events on a white board that I put on the table each morning so that Cheryl knows what is happening this day. I have not been writing down birthdays. She forgot Scott’s birthday. Of the few cards that I think she should send we forgot to send one to our son. A few other sad thoughts drifted through my head. But most of all I realized that she had lost the birthday card duty. She had forgotten it. This is a long time thing that she did for our family and her mother while Elaine was alive. This is a longtime activity for her. Her short term memory has been off or fading for sometime. I had gotten used to the fact that it is necessary for me to remind her of events constantly. (It is annoying but over time one gets used to it.)
Christmas, birthday, invitation, funeral cards are all gone. An actual paper card with a USPS stamp is how Cheryl learned to acknowledge things. She never adopted Facebook or any other social media platform for those.
Parkinson is a series of small setbacks. Sometimes it is so gradual it merely seems like life going by. It is easy to attribute all behavior changes to Parkinson, after all, he entered our lives about a dozen years ago and has made dramatic changes to how we now do things. Lot’s of older folks develop an apathy for life. They do not need Parkinson’s disease to help them. It is a kind of disinterest in life. Doctor’s have recently discovered this. Geriatric doctors ask specific questions about it when visited by their patients.
This topic about the birthday cards occurred to me in early May when no panic mailing of birthday cards or frantic searching of the black book or of the old address books that we had in our old house or her mom’s address book. It was a sudden occurrence in her behavior.
Could I be watching apathy creep out from behind the curtain? I will have to be alert to this behavior. So far Cheryl does not seem apathetic. She does have a fading memory. Are they the same?
Cheryl wants to cook something and I am afraid that she will harm herself. I cannot get past that.
Yesterday after our doctor appointment in the early afternoon, we stopped at Dewey’s pizza for a late lunch. Somehow the white pizza showed up with red sauce on it but mistakes happen and the pizza was good, just not what we had ordered. (That is the second time in a week that the incorrect pizza showed up at our table. Perhaps we need to expand our cuisine. ) Nevertheless, lunch was good and we returned home to do nothing for a bit. Cheryl lapsed into one of her punding/do something modes and began futzing with making something in the kitchen for dinner at 3 in the afternoon.
It made me nervous and I suppose what I should have done was sit in the kitchen to read my book and keep an eye on things. But I did not. I just popped in to check occasionally and point out that we did not need dinner for awhile as we had had lunch at 2:30 pm.
Family dynamics are hard to break. Before Parkinson she did most of the cooking and I stuck to my baking hobby out of the way at the other end of the kitchen. I stayed out of the way when she was cooking. My opinion was not solicited nor encouraged in our old house. Cheryl was a good cook and in my new duties as cook among other things I have tried to duplicate many of our old favorite recipes. Sometimes I would botch them up but most times they turned out the same. (Thanks, Betty Crocker.) These days when she gets in a mood to cook, things can turn out badly, but, more importantly, she has fallen in the kitchen as often as anywhere else and I worry that she will put her hand on a burner or fall into the hot oven.
When I could not gently steer her away from her “cooking” – she was boiling two eggs – I became angry and upset and tried to explain the danger to someone who sees none.
And last night she slept poorly. I blame me for that. Lot’s of emotion swirling around in her head as she tried to sleep left her fidgety and awake until almost four am. Even the big new bed did not help.
Carpe sad Diem. An opportunity to make a memory was lost to anxiety and anger. But tonight we will make something together. I will do better this time.
Yesterday we picked up one sister of Cheryl’s and went to visit another sister of Cheryl who lives about forty miles down the road. It was a very pleasant visit sitting on their great front porch perched up a hillside with a nice view of the Ohio river to the north. We had a great conversation while some extra kids and grandkids showed up to drive go-karts and minny bikes over the hills and around the property. Sometimes it seemed like having a conversation on the berm of a nearby highway. Nevertheless it was a good day and this morning Cheryl is sleeping in for a bit.
Which leaves me with my morning coffee and watching the morning news shows. It also leads me to think about what is news to me. The morning news shows, as they always seem, are interspersed with the latest political dilemma, complicated financial maneuvering that makes money less valuable but no less important, some actor/celebrity fall-out from marriage or their manager, the best guacamole recipe or another use for hot dogs, the expected weather for the next week (it is remarkable how this is always bad news), the latest book usually a tell-all memoir – today about growing up as a child of abusive news reporters in California, and other useless, to me, drivel. I suppose a breakthrough therapy for Parkinson would be of much more interest. Sometimes news is merely superfluous information and blather.
I turned it off because I noticed I was using it as background noise for working today’s Wordle and a couple other puzzles I have become fond of working.
I like crosswords. I suppose that is my father in me. He liked crosswords also. It probably sounds odd that I care little for Scrabble since it looks much like a crossword when completed. I think that has mostly to do with competition which I also care little for. I am not competitive except with myself. Crosswords and stroke-play golf fit into those self competition categories and maybe bowling.
Journaling and writing and blogging is also an interest. Today is also wash-the-sheets day and I am starting later because she is sleeping in.
Adjunct_Wizard 