That thought popped into my head as I looked through stories on this blog and thought about the past couple years with Cheryl.
I do not want to be bitter. What I want is to leave it all behind for a while.
Hind sight is twenty-twenty as wisdom has written but the view is also distant and wider. It can be more scenic. Much sweetness is visible with the bitter.
Looking forward has greater appeal.
Carpe Diem.
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.
Carpe Diem.
This morning I restarted my morning chair yoga exercise routine. This morning I restarted morning meditation. Two things I notice: I have a pleasant gentle ache in various muscles from the stretching exercise, I did not hear the tinnitus in my ears while focused on breathing. These came to me as I sat across the room to revisit that short experience and my sense of time passing so slowly dissipated while I did these activities. My timer seemed to announce completion after a mere ten milliseconds instead of minutes from when I started it.
Time compressed. Where am I going? What am I hunting for?
Good health and peace in my soul is my spontaneous answer to the second question. Does going mean physically moving and travel to somewhere? Or is it internal? Some of each? Neither?
When Cheryl was still alive and with me here at home, I began to worry that my own health and well being suffered because I was totally focused on her health, what she ate, how much she ate, her mobility, her balance, her attention, her memories, her perception, her moods, her bowel urges. I rejected concern for myself.
Much of that concern then is useful for me now. Now I am focused on my health, what I eat, how much I eat, my mobility, my balance, my attention, my memories, my perception, my moods, my bowel urges. I think older folks focus too much on bowel urges. At the same time it seems important to note what foods that used to be favorites no longer seem to be tolerated as well as they once were.
When Cheryl was still here I began and kept up for many months an early morning routine of chair yoga. I bought a book. (I am always hunting for the manual.) I found the book back this morning after I finished my ten minute scheme to start. The exercises are simple and directions have illustrations. (YouTube has plenty of these but as soon as one gets into the zen, the calm, the mood, some extra-volume political message appears and phffst, just like that zen is destroyed. For an unreasonable sum, YouTube is ad free.)
Facebook shows me advertisements for an app with some 90-something guy with great abs doing chair exercises too. Those are amusing and laughable and less obnoxious and quieter. Welcome to the world of zen and social media.
I am not hunting for perfect abs. I remain uninterested in protein shakes.
I am interested in losing a little weight because my pants would be a bit looser. Most of that weight is hiding out on the front of me. I see it every day in the mirror.
I like meat. Meat has protein and tastes much better than a protein shake. Peanuts, nuts, eggs, oats, seeds and wheat have protein and all of those taste better than a protein shake. If it isn’t broccoli or celery, there is some protein in it. Broccoli has better taste than a protein shake.
Where am I going? That remains to be seen and felt. I strive to find a deeper meaning within myself.
For most of the spring and summer months I found something in pedaling my bike along the bike paths around town. I found an inner peace. I learned to focus over time on the piece of the trail immediately in front of me. I looked far ahead only to anticipate obstacles and plan maneuvers around them.
I returned to our church. Cheryl was much better at religion than I am. I am more questioning. I returned to church not for the religiosity. I returned for the community. I sit in a different place. (Everyone seems to have their place in a church.) Cheryl had a place that she liked to sit and of course I sat with her. I sit in a different place now. Just me.
I am going toward the next thing. That thing is right in front of me. It is not way out in the distance.
“Winter is coming”, says the head knight staffing the wall in Game of Thrones. It is indeed. Prepare for it. Dress for it. Do not be anxious. Anxiety serves no purpose.
Carpe Diem.
On Sunday September 8th the Rev It Up for Parkinson Walk/Run/Bike occurred. My daughter contacted a friend of hers who does silk screening and had special T-shirts made.
This year has been special in many ways.
At the beginning of the year Cheryl was in a memory care facility and was also being cared for by Queen City hospice. On April 22nd, she left this life for another.
She missed her 75th birthday by a couple weeks. I made no note in my journal about her birthday. I was down on that day. It was only a few days after I buried her.
I think about her often. Little things will go by in the day and my first inclination is to look over where she should be – in her chair at home, on the passenger side of the car, in the kitchen – to ask her about what she thinks or how she feels about it. Whatever it is.
My birthday came and went. I went to visit with my sister. I wanted to see her but I also think I did not want to be without someone on my birthday. Birthdays were a big deal to Cheryl and she made everyone around her understand why that day was important.
Our wedding anniversary came and went. I wrote her a letter. Writing it seemed to help me a little.
This walk/run was a favorite fundraiser of hers. I felt a little lost on Sunday. Last year she was unable to get moving to be there for the walk. Our family went without us. Over time Parkinson’s disease will peter you out.
I purposely work to remember her before the disease petered her out.
Afterward I used part of the afternoon to ride my bike for a bit. I thought about how she would have wanted to be with everyone. I thought about what a loving and kind person Cheryl was. I thought about how she would try to (her words) make sure everyone was satisfied and doing well.
I think that I was not doing well. I had not thought about that until my sister called in the evening to chat about how it all went. We talked for a while. I told her it was good and it was fun. I was at my son’s house and he had just asked me if Mom had ever actually walked the whole walk. I said no and was in the midst of memories of us walking when we used to hike. I had some videos of Cheryl on my phone and was looking at her Parkinson stride when my sister called.
Thanks, Joyce. I needed you right then and did not know it.
Carpe Diem
Thinking all the way back to high school, I have had a fascination with poetry of all sorts. I credit Fr. Averbeck and his English Literature class for this fascination. His love of Shakespeare and poetry came through when he taught. The school was re-organizing the scheduling for many classes and trying to fit as much as possible into the school day. Eng. Lit. was merely thirty minutes long. It was the best thirty minute block of time in my day.
Poetry invokes a picture which develops into an emotion and a feeling which awakens other senses. Smells erupt and colors appear as you let the words tell the story of the author has penned. The picture may be very different from the words. The picture may be very much like the words. Listen. You will see it.
With Cheryl gone, I find myself reading more and reading poetry out loud. I am surprised sometimes at the involuntary emotion that sounds in my voice. I am not surprised at the memories that are awakened by various poems. This one – Casey at The Bat – is sort of corny, and yet, my voice always wavers and most times tears well up in my eyes. It takes me to a time when our youngest child had to memorize a poem in grade school. His intention was to find a short poem. I challenged him to commit to memory “Casey At The Bat”. I will learn it with you. It became a dinner time thing.
I would say, “The outlook wasn’t brilliant for the Mudville nine that day, the score stood four to two with but one inning more to play.” We traded lines back and forth. When he recited the poem in class for the rest of the students and his teacher, he told me one of his classmates asked him, “Did they win?” I laughed. He went on to tell me it was the longest poem anyone recited.
Those are good memories. It should not be surprising to me that tears of nostalgia appear in my eyes.
Casey at the Bat
By Ernest Lawrence Thayer
A Ballad of the Republic, Sung in the Year 1888
The outlook wasn’t brilliant for the Mudville nine that day;
The score stood four to two with but one inning more to play.
And then when Cooney died at first, and Barrows did the same,
A sickly silence fell upon the patrons of the game.
A straggling few got up to go in deep despair. The rest
Clung to that hope which springs eternal in the human breast;
They thought if only Casey could but get a whack at that—
We’d put up even money now with Casey at the bat.
But Flynn preceded Casey, as did also Jimmy Blake,
And the former was a lulu and the latter was a cake;
So upon that stricken multitude grim melancholy sat,
For there seemed but little chance of Casey’s getting to the bat.
But Flynn let drive a single, to the wonderment of all,
And Blake, the much despised, tore the cover off the ball;
And when the dust had lifted, and men saw what had occurred,
There was Jimmy safe at second and Flynn a-hugging third.
Then from 5,000 throats and more there rose a lusty yell;
It rumbled through the valley, it rattled in the dell;
It knocked upon the mountain and recoiled upon the flat,
For Casey, mighty Casey, was advancing to the bat.
There was ease in Casey’s manner as he stepped into his place;
There was pride in Casey’s bearing and a smile on Casey’s face.
And when, responding to the cheers, he lightly doffed his hat,
No stranger in the crowd could doubt ’twas Casey at the bat.
Ten thousand eyes were on him as he rubbed his hands with dirt;
Five thousand tongues applauded when he wiped them on his shirt.
Then while the writhing pitcher ground the ball into his hip,
Defiance gleamed in Casey’s eye, a sneer curled Casey’s lip.
And now the leather-covered sphere came hurtling through the air,
And Casey stood a-watching it in haughty grandeur there.
Close by the sturdy batsman the ball unheeded sped—
“That ain’t my style,” said Casey. “Strike one,” the umpire said.
From the benches, black with people, there went up a muffled roar,
Like the beating of the storm-waves on a stern and distant shore.
“Kill him! Kill the umpire!” shouted some one on the stand;
And it’s likely they’d have killed him had not Casey raised his hand.
With a smile of Christian charity great Casey’s visage shone;
He stilled the rising tumult; he bade the game go on;
He signaled to the pitcher, and once more the spheroid flew;
But Casey still ignored it, and the umpire said, “Strike two.”
“Fraud!” cried the maddened thousands, and echo answered fraud;
But one scornful look from Casey and the audience was awed.
They saw his face grow stern and cold, they saw his muscles strain,
And they knew that Casey wouldn’t let that ball go by again.
The sneer is gone from Casey’s lip, his teeth are clinched in hate;
He pounds with cruel violence his bat upon the plate.
And now the pitcher holds the ball, and now he lets it go,
And now the air is shattered by the force of Casey’s blow.
Oh, somewhere in this favored land the sun is shining bright;
The band is playing somewhere, and somewhere hearts are light,
And somewhere men are laughing, and somewhere children shout;
But there is no joy in Mudville—mighty Casey has struck out.
Copyright Credit: n/a
I love that poem. I can hear the crowd and smell hotdogs. But mostly I can see Scott as a young boy stretching his arms and growing into himself. This effort by Thayer is an ode and tells a story. Many poems that I read are more prayerful and and paint a much different picture and evoke a feeling of calm. Some can enrage. This one brings with it family time.
Carpe the Labor Diem
Cheryl was not a big spender. If anything she was a frugal spender and a diligent saver. When I was looking into financing a stay in some facility that could take care of her needs better than I thought I could, the price tag always took my breath away. I learned this from her but I had always felt that we had saved all our life for this very reason. Ultimately with help from my sister it worked out.
But when she did decide to spend, stand back! She had very strong opinions about what, where and how much. On shirts in the spring and summer seasons she was fond of flowers and patterns both had to be light and bright. In the fall and winter season her taste was stripes and solids. Both of those had to be darker and more subdued. I am taking all of this into account as I put together a memory quilt of her shirts with my daughter’s help.
Cheryl had two favorite stores; Kohl’s and J. C. Penney. Of the two she liked Penney’s the best. When J. C. Penney closed their mall stores in favor of stand alone buildings or mostly separate buildings this merely made it easier in her mind. And when she quit driving and I became the pilot these occasional trips became excursions. The particular location that we traveled to several times a year eventually did not keep up with profit margin expectations of the corporate office and it was closed.
The next closest Penney’s store was twice as far away driving time. Earlier I used the term excursion, so, this fact was okay, maybe more so. Kohl’s could never become an excursion because four minutes driving time on surface streets can never qualify as an excursion. In addition the type of shirts she might be inclined to buy were located barely into the four-minute-drive store, so, a Kohl’s visit was a pop-in visit. As if parkies can pop in anywhere.
On a cool day in late fall almost two years ago now, she announced one morning, “we need some new towels!” I responded with sure, do you want to go now? Today? She said no but soon. Soon became that afternoon and we went to Penney’s for towels and afterwards somewhere for dinner. An excursion was afoot.
This morning with her no longer here I was using these towels and wash cloths and thinking about that excursion and other excursions. Bath towels came from a department store like Penney’s. Kitchen towels (rags) came from Target, K-Mart, Kohl’s or the like. Pop-in stores. I was thinking about the source of things later as I was putting away the towels and disposing of other items that I had laundered the previous evening.
When we went to Penney that day looking for towels we stopped to look at earrings. None where to her liking so we moved off into the back where bath and bedding items are located but additionally there is a restroom. After the earrings she needed that facility and we were still in the stage of care where I did not need to go with her to help. Afterwards, it was on to the bath towels finally. I was the excursion driver but I was still working on patience. Often looking back on our life with Parkinson I notice how I readily agreed to some outing to somewhere but often when I got to the end point I became impatient to get the program over with.
There are many different aspects to shopping in a store for something specific. There is a wide selection of manufacturers, qualities, colors of bath towels. Cheryl would get stuck trying to decide. This was her term for it. Trying-to-decide, I think her brain got stuck on too many selections and internally she was thinking, what about this color?, this feels nice, is this a good brand? I could find my patience back when I detected this coming on her. I could not always see this happening. She was closer to death before I came to understand that I should make suggestions and help steer her thinking a little. A menu in a restaurant, a recipe, directions in a sewing pattern, a smart phone, a dumb phone, TV remote control, a fork, all of these over time became very hard if not impossible for her to understand and operate. This woman used to write software, analyze business data, taught in grade school, balanced the checking account without a calculator.
I suggested that since our overall theme of our condo was a light true green, that perhaps, we should look for towels that can go with that color. Perhaps mustard yellow was out and maybe also pumpkin orange, although browns and deep reds, fall colors would work. “This is a nice deep green…” And this cream color would provide a nice contrast. I like this deep red. We could put it out at Christmas. On the conversation went but she was no longer stuck.
We bought two of each color selected. We bought matching hand towels and wash cloths. I was particularly proud of the fact that even though two of each item was not available in the store, I was able to fill out the pairs buying them online. When UPS brought them a few days later she said, good I thought we had left them at the store. We should wash them first before using them. Sure I said as I carried them to the washer and assembled a bulky items load in it.
I wash a lot of items together and call it a mixed load.
Using the towels always reminds me of Cheryl. The towels I use most often for myself were actually purchased at Macy’s after we shop lifted them on the way to Dillard’s a few years previous. It is a similar story except that she wanted to go to the mall to look for towels – I think it was for towels. I may have just talked her into going to this particular mall because it was inside and had easy access elevators to get to each level. Nevertheless we found a couple towels and I put them onto her walker and she wanted to keep shopping so we walked right out of Macy’s to Dillard’s. It was not until she could not find what she wanted at Dillard’s that I realized we had shoplifted the towels from Macy’s.
We paid for them on the way back through Macy’s to our car.
Whenever we went to Target for anything she would announce that we needed some new wash cloths. We bought several times the inexpensive ten-for-a-dollar packs of wash cloths. These would fray easily in the washing machine. Cheryl would sit in the evening and trim off the edges so they could fray faster.
I have lots of memories from these towels and wash cloths. The cheap ones I pitched out. They were clogging the lint trap in the washer and the screen in the dryer.
Carpe Diem.
Wednesday as I rode my bike around my favorite path, the Lunken Airport loop, I noticed, was amazed and elated that the bench is back. This bench sits at the top of a paved path to a lot where many folks park their cars to walk or ride the loop around Lunken. The view is of the tarmac behind the old terminal that has been neglected by the city fathers and mothers on the council.
The bench disappeared for a while. I assumed falsely to be repaired. It looks no different. Perhaps someone stole this valuable piece of art and the parks department replaced it with another. (He thought, tongue in cheek.)
Cheryl and I often came here to eat at the Sky Galley restaurant in the terminal. It was a favorite of her mother when Elaine was alive. The bar was always full and the atmosphere was friendly. Private aircraft landed and the pilots and passengers stopped in to eat. The national guard guys would fly their helicopter over to train and get a bite to eat.
The Sky Galley is closed. The restroom facilities are part of the terminal building and not up to city code. Maybe there is another problem with a building – an art decco gem actually – that the city owns.
Riding around the loop I think of these things. Memories of bringing Cheryl and her mom here to eat. A couple times we met Elaine and Bob her for dinner when they were both alive. That was many years ago now. Those are all good memories.
It is sad that the city does not maintain gems such as this. Tempus fugit.
Carpe Diem.
Some have too much money. A few days ago I found myself reading an article in the Wall Street Journal about a couple who had bought a “four hundred year old fixer upper” for a trivial sum of seven million dollars. I initially thought “good for them” they have enough money that they are not concerned about the 7 mill cost and the place may need another couple of millions to rehab and get it livable. It is the American dream. Money is fungible. Why not funge some of it into a building assembled in 1600 and something, own a piece of history.
Some have too much money. Remember the story about the needle eye and the camel?
A few days ago I rode to a restaurant on the river bank with a group of my in-laws. The conversation wandered around all over as it often does when I am with Cheryl’s youngest brother and the boat owner. Somehow Melinda Gates and her leaving the management of the Gates Foundation popped out of the rabbit hole and Ken asked what I thought about other folks just giving their money away. We never finished that thought because the restaurant was near and the crew (me) was in experienced. However later as I drove home I thought I care little about what others do with their money. I do not envy them. They have to figure out how to get though the eye of the needle without stepping in the camel dung.
Some with too much money buy 400 year old fixer uppers. Some donate vast sums to political campaigns. Some travel to exotic places. Some buy yachts and sail to distant shores merely to enjoy the wine. Some buy lots of wine and keep it in the basement (cellar) to drink later if they live long enough and remember which basement stores it. Some give their money to foundations to support a cause that they believe in whatever project that is. Scrooge McDuck used to sleep with his if I remember the comic correctly. It matters not how they spent their money.
I only care about my money. My hope is that It will run out about the same time I do. So far that seems to be working out on its own. There is a story about that in the Bible too.
When Cheryl was still with me, I thought if I could buy a cure for her damnable disease it would be worth every penny of savings to do that.
Do I think there are better things to do with 7 million dollars than buy a 400 year old fixer upper? I do but it is not my money so what I think matters not. Godspeed to them, I say.
I do miss Cheryl though, and all the money in the world will not bring her back and make her healthy.
Carpe Diem.
I wrote the following essay about two years ago. I put the first draft of my book about Cheryl and the last five or so years of her life together in the form of my web log essays and stories gleaned from there and my journals.
I am letting my book gel in my brain for a while and as I do this I occasionally reread an article that I wrote sometime ago. Cheryl often comes into my thoughts and explains her side of the story. It can be and often is a mystical experience.
Has she apathy? As we move forward it seems to me that she cares less about day to day activities. She seems to recede into her own thoughts but not as a prevailing occupation. I think of it as apathy-not-quite. When she gets in this mode it’s often temporary. She is tired from some activity.
Specifically activities like taking a shower, getting cleaned up, physical therapy sessions or exercise classes are obviously tiring for a PD sufferer. Something as easy as thinking about what is next seems to tire her out also. It like a temporary apathy. Procrastination?
It starts with, ” I don’t think I can go to… exercise class, church, physical therapy…” Admittedly it takes a lot for anyone to be motivated to exercise. It was not a big part of our lives when we were younger. Neither of us were sports buffs. My main sport is riding my bike. There is a solitude to doing that which I am unwilling to give up or share. As her care partner, it is frustrating for me that she cannot observe how much she is helped by exercise and her PT sessions. She seems to not remember. It seems like she is going merely because I am taking her there.
When Cheryl gets in this mode (mood?), I turn the corner to something else. I am resistant to letting her go on and isolate herself in her little office area thinking, punding and organizing. I take her out. Anywhere works as long as it is out of our condo.
Yesterday I took her one of our local county parks that we have not visited for a long time. Afterward we went for ice cream at a nearby Dairy Queen. I had planned to make dinner at home but she suggested we find barbecue somewhere. This being an odd suggestion because it seems to upset her stomach often and she says never again later in the evening. We did not find the barbecue place to be amenable to folks with mobility issues so we landed at one of our old favorites and ordered something different than we usually get so the newness was preserved. On the way home she thanked me for taking her to Lake Erie and she told me a story about when she was very young.
In the early days of her father running his own gas station which was a life long dream of his, he rarely took any vacation time. It seems one of his friends had a vacation cabin up near Lake Erie and not far from Port Clinton. There is a park nearby called East Harbor State Park. Our walk by the shore of a much smaller lake in the park much closer to home than Lake Erie must have taken her mentally back to her childhood and a very fond memory. We visited the same area a few years ago and visited East Harbor.
She talked at length about the trip with her mom and dad. She thanked me for getting her there and back in the same day.
I started this writing and contemplating apathy, but maybe it’s projective (mine) apathy? Or predictive apathy? Or apathy is the wrong word? (indifference? passivity?) Or is it poor sleeping patterns? This morning she got up at quarter til ten which means that she was in bed for about eleven hours. She awakened this morning from the same position she fell into when she got in bed. On the previous evening she went to bed very late after midnight and slept very little. (As a result I slept little also.)
Is apathy and memory related? I wonder about ideas like this. Perhaps she cannot remember that she seemed to enjoy herself the last time we went there? Wherever there is.
When I finally teased Cheryl awake this morning, she opened her eyes and asked, “Is Mary Pat here?” An amusing opening question about the day. I smiled and told her, ” No Mary Pat is not here. I think you were dreaming about her.” I have no idea where the Mary Pat (a childhood and current) friend thought came from but she has talked to her a couple times over the past few weeks.
I encourage her to talk to her friends when she gets excited about some memory or misconceived thought. Many of them have had strange conversations with her about things. I used to be embarrassed for her and, at first, discouraged these phone calls which she often decides to do later in the evening. But as I thought about it I decided that it was not my place to absorb or accept or become embarrassed for her. Her friends know her state of mind. They are wonderful people and she is blessed to have them as life long friends.
Focus, cognitive abilities, caring, likes and dislikes are all related to memory issues. Staying active, no matter how small that activity is, helps.
Carpe Diem. Written July, 2022
The picture is from the same time that summer. Parkinson Community Fitness had a luau party.
Carpe this Diem.
Lately I have noticed how the residents at the Harbor at Bridgeway Pointe seem to perk up and take part in the music that gets played occasionally either as a part of Hospice care or BP’s effort to provide activities for them. Most residents have some physical inability to participate fully and yet they do their part. Music has this effect on everyone.
One day when I returned to my little condo I looked at our old stereo and drug the two plastic tubs of LPs that had made the cut to our new place from the old one. Once before Cheryl and had done this but it has been a few years now.
I have played several old albums during the past few evenings. We have quite a collection of stuff. She tended toward Johnny Mathias and the Four Tops. I tended toward the Iron Butterfly and the Doors but intermingled in the tubs with those are Carly Simon, Crosby Stills & Nash, Peter Paul & Mary and Linda Ronstadt (another parkie). Growing up in the late 60’s and married in the early 70’s, I was very tuned into the Vietnam War and the associated commotion that it stirred up in my generation. So, there are a lot of folk singers in the tubs.
Listening and not listening to Crosby, Stills and Nash this morning, Steven Stills started singing, ” Helplessly hoping her harlequin hovers nearby awaiting a word.” I quit working the quordle for a minute and listened carefully. The refrain, ” They are one person. They are two alone. They are three together. They are for each other.” made me cry and think about Cheryl.
“Wordlessly watching he waits by the window and wonders at the emptiness inside.” – Steven Stills. 1969 Gold Hill Music Inc.
I needed a bit of nostalgia. This song and these words have a different meaning to me today. I will spend some time thinking about this today. I think Cheryl is getting close to the end and it breaks my heart. It is hard to find good in any of this situation.
Carpe the damn Diem and keep looking.
Adjunct_Wizard 