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.
Is the answer to life and the universe but what was the question? Deep thought…
However I got there originally I rediscovered the “Hitchhiker’s Guide to the Galaxy” by Doug Adams (H2G2). His trilogy of five books (yes, five) I read partially earlier in our married life. The children where small. Life was chaotic as it often is with small people around. I never finished the 5 before now. And the story has reappeared in my reading list. It takes me off of life for a bit. Its depiction of the universe is philosophical and geeky, perhaps even, odd but why not? The story is chaotic.
My life currently seems odd to me without Cheryl. It is time to shake it up.
A big part of life is the journey. It is the part of life that is often ignored. It is important to get there fast. Wherever there is and sometimes when there only disappointment is available. At this time I resolve to enjoy and document the journey. It is early for resolutions.
I am just thinking about what I am thinking about. And putting my notes out there for all to see.
The Deep Thought in the book says that the answer is 42. It also says that the question is unclear. Suppose I plan a bit for the future but do not be consumed by planning. Tough for a retired engineer. We’re trained planners. A good job is a job that has few to none awshits due to excellent planning.
No plans exist in H2G2. The characters are given to chance in the universe. Ford, Arthur and Zaphod are off to get something to eat.
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.
Lately I have been in a deep blue funk, a pile of heaping morosity, unsure of where to go from here. Vocabulary.com writes: When someone is morose, they seem to have a cloud of sadness hanging over them. This word is stronger than just sad — morose implies being extremely gloomy and depressed. We all can be morose at times, like after the death of a friend or family member. Whether you’re morose due to an event or just because you’re feeling blue, you should try skipping or whistling a little tune to perk things up. To find the other side of that mood, I do chores and concentrate on doing those efficiently and well. I am still arranging my little condo into a bachelor pad (for lack of a better description).
While doing chores I play Spotify on the TV or on a Bluetooth speaker I carry with me. A song list called “Classic Road Trip” is long, does not repeat until 700 songs later and sounds like old WSAI without all the Coke ads.
“I Ain’t Missing You at All“ by John Waite has words in it that captured my attention today. Usually the music is just background. This place is so quiet without Cheryl in it. Or maybe there is a hole that keeps me from being whole, nevertheless, he sang, “… And there’s a storm that’s raging through my frozen heart tonight. I hear your name in certain circles and it always makes me smile. I spend my time thinking about you and it’s almost driving me wild and that’s my heart that’s breaking…” I had been singing along but that got to me for a little bit. I had not noticed that the lyrics are generally sarcastic.
But I hear other’s words and relate them to things that I am feeling. I collect them on little scraps of paper. I found several while cleaning up a bit. Sometimes they are words to live by. Sometimes they are clever colorful descriptions from novels. Here are a few. It is up to you to discover the meaning.
To serve is to live. — Frances Hesselbein
Life is about living not existing – Arnold Schwarzenegger
You’ve got to be taught to hate and fear – from South Pacific
Marooned in a blizzard of lies. – social media rant
Oh, to be thirty years old again and have a prostate the size of a peanut. – wistful thinking by an older man.
It is not often that you realize the benefit of talking to close friends, with no pretense, with no excuse. – unknown
This last line I read somewhere. I wrote it in one of my many notebooks. It is very true. Simply being with friends and enjoying their conversation, the conversation past, “how is Cheryl?”, “how are you?”, which are two questions that I wish I were never asked, is generally enjoyable and relaxing. They know that I will volunteer information if I want to do it.
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.
One of my favorite words is Luddite. It is a pejorative. Luddites are resistant to technology and change. Buddhism and Hinduism share the doctrine of Anicca or Anitya, that is “nothing lasts, everything is in constant state of change”. Imagine a Buddhist Luddite. There is a guy with a serious mental health issue.
Difficulties of life while supporting a person with any sort of chronic disease tempers one’s world view. I have come to decide that change in perspective is necessary for a healthy mind, a calm mind, a sane mind.
I have decided to make three changes in my day that I hope will adjust my personal perspective. In the morning spend an hour writing. It is quiet. Use the time wisely. In the morning spend fifteen minutes doing some exercise. In the evening read for an hour. Stephen King has a new book.
I do some of this currently. Generally I read for an hour or so before I go to bed but after I help Cheryl to bed. It is quiet in the late evening. Cheryl usually needs time to settle down. If I go to bed at the same time as her I tend to lie awake listening to her squirm and rub and pat the bed and generally fidget. Often while reading I find myself listening carefully to hear if she is moving. If this happens I realize that whatever reading material I have is not holding my interest and attention. It is time to sleep.
For awhile in the morning during the early summer I had a series of chair yoga (old out of shape people yoga) exercises that I did in the morning. The whole series took about 15 – 20 minutes. Somewhere in June I lost interest and quit but exercise is boring and doing exercise because someone told you it is good for you is uninspiring. I do not simply believe ideas that others expound. I look for some validity elsewhere first. Perhaps I need to mix it up and find my groove. I am still working on that aspect of it.
Write in the morning during the early hours while Cheryl is still sleeping. Make it a routine and perhaps I can finish my book. My it a routine and perhaps I can inspire myself. I have started three different book ideas. I have to select one and push it.
A fourth thing not mentioned above is go back to working with students in the program I am involved with at a local community college. It is a fact that communication with others without dementia can be a relief from the miscommunication that occurs in our every day life. Four hours is about long enough for me relax and not think about Cheryl. It is a break. I think I need that.
It is later in the year. The sun goes down earlier in the day. Cheryl’s brain wanders off into some odd places when it is winter gloomy outside. Our condominium is one the first floor of a two story building. We are in the back and the windows face east with a view of an overgrown woods. It can be a bleak landscape view in the winter. In the summer it fills in close enough that there is no view of the sunrise. Garages line the front so that there is no view to the front and the typically magnificent sunsets we can view from our hilltop. But it is a one floor plan which is perfect for Cheryl and her bad knees. it is, however, dark in the winter and on a cloudy summer day much like viewing the world through cataracts.
And there you have it, my first morning of writing and thinking.
Adjunct_Wizard 