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.
Often when we went to see her neurologist and I talked to him about Cheryl seeing things or we saw the nurse practitioner and had similar conversations, he spoke of sensing a presence nearby. For the past few weeks that Cheryl has been away I have had that same sense of her nearby. It occurs mostly in the morning when I awaken. The sense of her is not always there but it is often there.
I admitted that to myself and others when we met for our support group meeting last night. The concept is hard to describe. There is something about being sensate to this world and being aware of our presence in it that implies to me an additional sense of soul. If there is a soul who is to say two souls cannot touch each other. They could become entangled and affect each other. Why not?
Yesterday I did not sense any of this presence of her. When I went to visit she was deeply asleep. No amount of talking or kissing of ears would awaken her. In the evening when I was home alone after my second visit I felt disconnected. Something was missing. I have no idea what but I felt or did not feel something. It was an emptiness and maybe a little anxiety because whatever it was, it was not there.
On this morning I felt her. I was certain she was awake and aware. When I went to visit, she looked at me and smiled. Maybe it is just fifty-three years of marriage. Maybe it is just a comfortable familiarity and an expectation that she will be with me in the morning. Perhaps it is just a pleasant dream of her that I am waking from. Perhaps it is what is referred to in the Star Wars movies as the force. I like to think there is an ethereal connection between us. We are eternally connected souls. Maybe a quantum connection exists.
Yesterday her end of the connection was off. Today it was not.
An early morning wake-up activity for me is working my way through the Wordle, Quordle and Octordle, although I have little idea how to pronounce the last one. Being non-competitive does not mean that I do not enjoy intrinsic triumphs. I am a fan of crosswords, golf and trivia. All of these can have an externalized competitive setting but primarily these are the player versus the game itself. Nevertheless, words and word games are a fascination to me.
Occasionally working my way through these in the morning sparks other thoughts. An arbitrary word guess – because i am stuck and I have pecked in five letters to discover what my brain thinks about it – will turn into a valid word, often wrong, but valid. Campo was one of those. I am one of those who has several dictionaries and a couple bibles. I tend to look up bible citations and previously unknown words. “Campo” is a grassland plain in South America. (The Spanish and Portuguese got there first so they got to name things, I guess.)
In Octordle the object is to find all eight words in as few guesses as possible. My first two guesses are generally wasted while I hunt for vowels first. Once one of my vowel words showed all green but that was not my lowest score (low scores are best). Another internal fight I have with myself is to focus (or not) on a single word. Sometimes guesses are answers elsewhere. Those are just strategies. Today in one group all five letters where there after my third word entry (first guess). These were “r,a,t,e,h” sort of clumped in a corner grouping. EARTH or HEART are both good guesses here. I picked heart and I was incorrect. An anagram of both words is HATER which was the correct guess.
My brain whorled off into the ether. Heart versus hater. Light versus dark. Without a heart, one cannot live. Without hate not only can one live but life itself is brighter. An anagram is a simple rearrangement of the same letters. Perhaps we need more anagrams in our lives.
This morning my thoughts turned to ice cream. Cheryl and I often went out for ice cream in the evening. In two smaller suburbs there was a Dairy Queen in one – she likes Oreo Blizzards – and Aglemessis Bros. which is a small local ice cream and confectionery. She likes black raspberry chocolate chip.
There is a very good story about the second store. many years ago when Cheryl was still working one of her coworkers would have what she referred to as “Grandma’s Camp”. She invited the grandchildren to stay with her for a week in the summer individually so that she could get to know each child without the distraction of the others and the bigger family around that would be there during big family gatherings. Cheryl decided that this was a good, bordering on great idea.
Audrey, Anna’s third child, stayed with us during this episode of our life adventure when she was about seven years. I am unsure exactly how old she was but it suffices to say she was a young child. She was a very early reader which became apparent when I took her with me to visit my mother at the independent living situation she was staying in to help organize her meds for another week. Audrey read some of the names of the medications and was asking me what various ones were for. Mom took a bunch of stuff.
Afterward I took her to Aglemessis Bros. for ice cream. This store has an old fashioned soda fountain style counter in it that you can sit at and watch the folks (soda jerks) dish up the ice cream and sodas. We sat there. There is a big board on the wall listing all of the flavors and other less important information about price. There is also a menu of sundaes and other goodies in addition to a display case for various chocolate delights and chunky chocolate all sold buy the pound. It is a chocoholic addict’s downfall. Audrey looked up at the board and said to me, ” Grampaw, they have chocolate chocolate chip!” I responded yes they do and you can probably get hot fudge on top if you want that also. I did not know at the time that my granddaughter was a chocolate fan like me. (It makes me smile inside when I recall this experience.)
I think she got chocolate sauce on her two scoops of double chocolate chip ice cream as did I and we sat with satisfaction as we ate and watched the activity behind the counter. I suppose that is why I particularly enjoyed bringing Cheryl to the Aglemessis store. It always reminds me of this story. I think tomorrow perhaps I will see if I can bring Cheryl some black raspberry chocolate chip ice cream from there.
From a precocious, chocolate loving, early reading, intelligent young girl to a beautiful young woman, when I think of Cheryl and I going to Aglemessis Bros. for ice cream, I think of Audrey and chocolate chocolate chip.
There are special people in your life that unbeknownst to you are looking out for your welfare.
A wonderful thing happened to me last evening. A friend – I thought Cheryl’s friend – asked me in a text message if I was still going to a favorite pizza place on Tuesday evenings. I am not.
This was something that Cheryl and I started many years ago as a reason to have some time out of the house and enjoy each other’s company without the distraction of other things. We started the pizza tradition on a Friday night twenty or so years ago. Her Parkinson was non-existent. Our favorite pizza store at the time became very crowded on Friday and over time we tried different days until we landed on Tuesday for no other reason than it was not crowded on Tuesday. “Anything goes Pizza Tuesday” was born.
It is amusing as to how little family traditions are born. Our pizza Tuesday was born this way. On some Tuesdays we would try a different pizza store but it was always pizza. Sometimes Cheryl wanted a calzone. On those occasions I would get a hoagie sandwich. But Tuesday was sacrosanct and pepperoni was king. If it did not have pepperoni on it, it did not count as a pizza. It was merely flatbread with stuff on it.
As Cheryl’s disease progressed I kept up our outings for pizza. I invited our good friend and neighbor to come with us. I invited other friends and family. Some nights we had a crowd. Some nights it was Cheryl and me. During the pandemic pandemonium I carried out from our favorite pizza store and we ate around our dining table with our neighbors.
I kept this going for longer than was probably necessary. The last few times we went on a Tuesday evening Cheryl had little mobility and I would push her around in her transfer chair.
But I have digressed a bit. When Mary Jo texted me and asked about pizza Tuesday, I asked her what did she have in mind. After a few exchanges we settled on a time and she and her husband would pick me up. Two days ago, Cheryl had been mostly sleeping away the day as a result of all her activity on Monday. After our chat with Dr. Y she had three visitors in succession. That sort of thing tires her out. Sundowner Syndrome is annoying to deal with in winter but Showtime which she is still able to muster up for an hour or so just plain wipes her out. So on Tuesday she mainly slept. And on Tuesday I went to the bar with Gary and Mary Jo.
Help from Many Others
Two women have been a great deal of help to me over the past couple of years are Cindy and Linda. Both are cousins-in-law. Cindy is married to Cheryl’s cousin. Linda was married to my cousin Frank. Frank is gone from this Earth. Both asked how they could help me spontaneously without me asking for them to help. Men are not good at asking for help of any kind, especially me. Cindy recognized that first and volunteered to come and sit with Cheryl for a couple hours once a week while I went to ride my bike and got some exercise. Linda did a similar thing. I was able to twist her arm to get her to sit with Cheryl while I attended a seminar on caregiving a couple years ago. They will always be front and center in my mind when I think of people who have helped me the most as Cheryl’s cognition deteriorated.
If I look with different eyes I find myself surrounded by caring and kind people just like Cheryl is surrounded by caring and kind people at Bridgeway Pointe. Sometimes you just do not know who will step in to help.
When she tried to eat her fidget beads I reacted not with excitement but love When she poured her water in her lap I came to her aid with love and caring When she talks so soft I cannot hear I ask her to use her outside voice And yell with all her might
She replied I am. I took her fidget beads with me today I realized the meaning of out of sight, out of mind in her case totally I got a towel to dry her pants and sleeve I asked her if I could help her change clothes No, she said. I did not push. And I am learning to read lips.
Today she tried to eat her fidget beads To her these resemble candy. Touch is more important than being right Gentle touch and just being
This poem by Shel Silverstein is from an anthology of poems and cartoons published by him with the same name in the 1970s. I do not remember how we got it but I have several books of poetry. Poetry can tell a story, elicit emotion, evoke a memory or simply make one think.
Where the Sidewalk Ends by Shel Silverstein
There is a place where the sidewalk ends And before the street begins, And there the grass grows soft and white, And there the sun burns crimson bright, And there the moon-bird rests from his flight To cool in the peppermint wind.
Let us leave this place where the smoke blows black And the dark street winds and bends. Past the pits where the asphalt flowers grow We shall walk with a walk that is measured and slow, And watch where the chalk-white arrows go To the place where the sidewalk ends.
Yes we’ll walk with a walk that is measured and slow, And we’ll go where the chalk-white arrows go, For the children, they mark, and the children, they know The place where the sidewalk ends.
Hauntingly to me it is a metaphor for life. I do not know where the smoke blows black and the dark street winds but every life has rough spots. Childhood is full of hope and dreams and looking towards a bright future free from cares.
But growth and maturity catches us and distracts us from ourselves. It adds fear, anxiety and worries about things over which we have no control.
Looking back from the end of the sidewalk one sees with great clarity the chalk marks where direction was changed forever.
Or Shel may have been writing with something totally different in mind.
A small gymnasium with loud music and time to wait, the pre-dance show is boring. I am glad that I have a book. I am writing facetious nonsense.There is no pre-dance show. It is loud music, unnecessarily so, in a small gymnasium.
The girls on all the teams are enthusiastic and passionate about their routines. As a biased grandfather watching these kids perform I think my granddaughter did the best but two concepts interfere with that assessment, familial relationship and ignorance of the judgment criteria. A rubric would be helpful with the latter. There is no help for the former.
I did enjoy the afternoon with my daughter’s family. Earlier in the day Cheryl had been sleeping soundly in her recliner. I sat with her for a time. She did stir when I talked to her. She did not stir when I kissed her cheek. She did not stir when pulled the blanket from beneath her head and covered her with it. She did not stir when I kissed her good-bye and left to have some lunch before the ride to the competition.
Jazz Dance
Cheryl was safe and taken care of. I went to watch the dancers without concerns for her wellbeing. I thought about how she would have liked to have been there. I made a video to show her later.
Yesterday I put away the few Christmas decorations that I had spotted around. The very last thing was the door decoration that I had carried over to Cheryl at the Harbor. Later I realized I was a day early. Cheryl always did that on January 6th or the weekend afterward. I left a little carved camel and a note “Off to find the star…” in the place where I had set up a small creche that had been my mother’s.
I went out to retrieve the snail mail to today and noticed my note to mostly myself but able to be viewed by my neighbors. In the mail was an envelope from my sister that contained the signature page of her advance directive document should someone need to speak up for her at the end of her life. She has saddled that task on her lifelong friend Phyllis. I am her first alternate.
I visited Cheryl earlier today. She was sleeping very soundly so after sitting with her for a bit and sending her picture to her brothers and sisters, I kissed her good-bye. She did not stir so I left to find lunch at home.
Off to find the star… is a metaphor to me for life and where Cheryl and I are. I am very glad that she is well cared for at all hours of the day and night. Once in awhile I have this overwhelming sadness and grief that sneaks up on me at odd times. This morning it was during the simple activity of making the bed. It is funny how certain chores are taken over by various participants in a loving marriage. Cheryl always did this until a few years ago. Even a few weeks ago as I was making the bed I might be talking to her and encouraging her to select a certain shirt or “why don’t you wear your red jeans today?” Even though I was doing the bed, we would banter back and forth.
I miss that. The star dims with time.
My granddaughter is participating in a dance competition today. Soon my daughter will pick me up to go with her to watch the competition. Cheryl is safe and calm and perhaps asleep. I am off to find the star by myself.
That I will be the best husband that I can Be but not better than I Am.
That I will be the best father that I can Be but not better than I Am.
That I will be the best grandfather that I can Be but not better than I Am.
That is all I resolve to do in this new year of 2024. For those of you math nerds it is the day after 123123 (12/31/23) and one year after the Fibonacci year 01123 (1/1/23). Those dates may be significant to others who look for significance where there is mere coincidence but for me those dates only mark passage of time. After all the calendar is arbitrary. In the sixteenth century our calendar was adjusted by the Pope. It was adjusted again in the eighteenth century that is why George Washington and a couple other founding fathers have two birthdays. The Chinese standardized theirs in 2017 but in some places it is still 4721 or 4722 depending. There is much that is arbitrary and little that is significant with calendars.
Cheryl was the keeper of our home calendar but lately it was me that pasted birthday labels and marked other appointments and social events on it. In the week between Christmas and January 1st, I would layout the new wall calendar on the dining table and mark birthdays and other carry over appointments on it and then hang it for the last few days behind the current calendar. Lately she was unsure of which part to look at. To Cheryl it is Easter time. I have not purchased a new home calendar. Perhaps I should do that soon.
I have found and am wearing my father’s watch given to him to mark the anniversary of his 25th year where he had worked his entire life except for the bad times in the early 1940’s.
Time passes. Tempus Fugit.
Cheryl is comfortable, settled and safe in the Harbor memory care section of Bridgeway Pointe. Last week we met with a hospice care induction nurse to find the best course of care for her in this new year. I believe that she is getting the best that I can do for her in the new year.
No one can be better than they are. My hope is that I can be the best of what I am.
It is interesting and nostalgic to find a pile of random objects in your sock drawer and ask yourself – why did I keep this? Looking for something else I found a pile of these random printed things that I had kept over the years. The why for many of these is obvious. Most are cards that express love for me from Cheryl. I know why I kept them. Neither of us has been very poetic, romantic or good at expressions of love to each other. I mean that in the literary sense. We have always expressed our love for each other.
The employees at Hallmark and American Greetings are expert at expressing emotional thoughts. Cheryl would write Paul or To my dear husband at the top of the verse and sign below with simply Cheryl. I know why I kept them. I kept them because when I read them now I hear her voice. She is so much better than I am at marking life events with a card.
Sometimes things mark the first of some event, so, it is necessary to keep a record. In this particular pile is an old scorecard from a golf game I played with a friend from work. Circled on the card and highlighted with arrows is a “3” scored on a par four hole on an old Cincinnati golf course. The notation is “the first birdie for Gerbs” and the card is attested to by Rick Hilt.
I play golf very little these days. I still enjoy a round with my sons or grandson but it is no longer a passion as it once was. My very first round of golf I played with my father and my brother long ago on Blue Ash golf course. The course was brand new. It had only nine holes. My brother had chased his job to Florida but was back for a visit. It was a special occasion and I had asked for a day off from work to play. Bill gave me his driver, a tee and a ball and said, “Just swing it around a bit and get loose. When you are ready to hit, just think smooth.” I can still hear him say that. I was young, skinny and inexperienced.
The teeing area was elevated slightly but across the front of the tee was a riff in the landscape that drained the land in a rainstorm. The landing area for the experienced drivers began one hundred and fifty yards to the fore. The landing area for the hackers was the riff. The pressure to stay away from the dry weedy creek bed was great. As I approached the ball with my brother’s driver he said to me, “Remember. Smooth just think smooth.” I kept thinking smooth as I took the club head back. Being inexperienced and skinny I was unsure of grip and other nuances to send the ball rapidly into the hackers paradise below. As I swung the club forward I stayed with his advice, smooth.
I am sure it happened too fast but as I think about it, it is all in slow motion in my memory. The club impacted the ball squarely through the bottom of the arc. My body followed it around and through. As I lifted my eyes to follow the ball on its flight, it moved straight away from me for twenty or thirty yards of flight and then gently rose and headed to the experienced drivers landing area away from the surrounding clover, the weedy creek bed and the trees. It struck the ground two hundred or so yards from me and ran up the slight grade of the short grass for another fifty yards into the heal of the slight dogleg left fairway.
I was ecstatic and proud of my effort as I handed my brother his driver back and asked, “Like that?” He grabbed his club and switched to competition mode. My brother Bill was a scratch golfer and an excellent Bridge player through most of his life. He said, “Why don’t you have your own sticks?” He approached his ball and hit a very fine drive and when his ball stopped out in the fairway it was only a few feet beyond mine. It was the best drive from the tee that I ever hit playing golf. I had almost out drove my big brother. He felt the need to compete with me. It was a good day although that was it for my first golf game. I was in hacker’s paradise for the rest of the round.
In another handwritten letter, I have been “ripped a new one” by the mother of a child that played on a soccer team with my daughter. I kept it all these years for a couple reasons. It was the first time I have been ripped a new one in such elegant cursive and her reasoning did not carry any weight after my daughter pointed out that her daughter was an only child.
Memories like this come flooding back as I hold various objects from my very own junk drawer.
I still see Linda and occasionally talk to her because she is a dear friend of our neighbor Jane. They are both gardeners and talk often. Jane has had several bouts with lymphoma in her life. During a couple of these Linda called me and asked if I had seen Jane. How was she doing? And so forth. My response was to knock on Jane’s door and ask her to please call Linda. Linda was worried.
I do not know if she remembers the soccer incident.
There is a completely random collection of matchbooks from my old days of smoking. I suppose I was worried about running out of lights for my cigars and cigarettes. These were originally ensconced in a decorative water pitcher that resided on top of our hope chest in the bedroom. About two years ago our granddaughter was visiting and during part of that visit Cheryl began routing through the hope chest for something. When they were done the pitcher was put inside the chest. (This was probably another presentation of Cheryl’s slipping mental acuity.)
Some of the match boxes and packs evoke memories of times past. French Lick Springs resort is a wonderful memory. Cheryl and I went there early in our lives. It was part of Sheraton Hotels at the time and it was still just that, a resort hotel with a golf course and tennis and a built in nightclub. Meals were included in the room price. If your round of golf was scheduled over the luncheon hour, a call to the kitchen provided a box lunch on the cart when you appeared at the clubhouse. There were two swimming pools but the one immediately adjacent to the hotel had a roll back cover so that it could be used in winter and in the summer months was reserved for adults only. I remember sitting next to Cheryl poolside dangling my feet in the water and a guy approached in a jacket and bow tie and asked if I would like a drink. I ordered a gin and tonic. Cheryl ordered rose wine. I signed the check with my room number. It was elegant and chic.
For dinner one evening we ordered a Caesar salad. The head waiter prepared it table side and made the dressing there in front of us. At another time after dinner we ordered cherries jubilee. It too was prepared table side with a little flair and elegance as the sherry is set on fire and the alcohol is burned off. It is not the same as a time share.
There are several restaurants represented. There are also several packs of matches from the wedding of Diane and Ron. I wonder who they are.
There is a stack of old credit cards and ID badges from several work situations. My old Xavier University student ID is there as well as a luggage tag made from an old business card. We keep these items, I do anyway, because they are pieces of a life. They are memories to remember.
They are nostalgic. I do not keep bad memories in my junk drawer. A couple of those are on full display in my office atop my computer. There are good remembrances there too.
Adjunct_Wizard 