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.
friday comes with cool
sun peeks higher in the sky
autumn is awake
she speaks in my head
often with her quiet voice
our love continues
this day Cheryl is
this day memories of us
happy memories
Haiku form – 5 : 7 : 5 – is a favorite poetic form to me. Real poets, I do not consider myself a real poet, are able to paint a picture, elicit an emotion or start a meditation with seventeen syllables. Distilling feelings and ideas to their basic form. I have noticed in myself that many times words do not work. The search for a word with the perfect nuance of what I feel alludes me often. Perfection at reading what is not there is not my strongest ability.
And yet, funneling feelings into seventeen sounds is sometimes satisfying.
Meditation (I use that word instead of prayer) comes in many forms to me. Today it is distillation of thought into seventeen bits of non-prattle.
abracadabra in mind appears some pictures our happier times
grieve companion lost happy memories abound love is present, found
Thinking about Cheryl today as I write about our life with its past joys and wonderful trips and the sadness and struggles near the end has pushed me into haiku today. Waiting to see what the rest of the day brings and the realization that existence takes care of itself without my help is comforting.
I really enjoy playing this game from the New York Times. It gets me to think beyond what I perceive.
One of the words today was “shiva”. To me in my environment in my meager knowledge of the world, other cultures, other traditions, “shiva” says mourning and is part of Jewish faith tradition. I am also a poor speller. That shiva is spelled with a h on the end. It can also be something that one does in a cold late Autumn drizzle while waiting for the bus if you are located in the part of New England where the r is often dropped at the end of the word. These two thoughts in combination led me to type shiva into Google’s AI driven (assisted?) interface.
The Hindu god of destruction appeared with a picture. All became clear. Before I returned to the NYT Games page to search for the rest of the connections to shiva, I spent some comfortable blissful time reading about Brahma, Vishnu and Shiva. (Creator, Preserver, Destroyer) I play this game every morning but I do not always finish it because I become impatient with myself and the search for the connections. Patience is a virtue that has to be practiced often even in small ways to become comfortable. And I am not a keen observer of pop culture. Some connections are those kind.
All of this came while I am baking another new recipe and became distracted with thinking that Carl Sagan had written a book called Connections but his book is actually entitled, “Cosmos Connections”. I used to have it somewhere. His show from the 1980s is called simply Cosmos. Astronomy, planets and stars and night time sky phenomena also fascinate me. Oops I have fallen down another rabbit hole but it has led me to thinking about Cheryl. Or maybe the smell of baking has caused me to think about her.
Cheryl at the very end of her life became enamored with the moon and its phases. A couple times sitting with her in the evening in front of our home watching the moon and airplanes and the international space station go by, I saw the wonder in her eyes and voice as she marveled at the bigness of it all and the smallness of us. These little snippets of lucidity appeared at random. I think she was sensing something that I could not.
I miss that and I miss her. I am glad that our connection is so strong. I am glad that she leaves me little messages around when I hunt for things.
Carpe Diem… (I’m sure you can smell it. Banana Nut bread)
I recently asked to be a part of and help with a ministry at our church called GriefShare. It is a support group for those of us dealing with the loss of a loved one. Mother, Father, Sister, Brother, Son, Daughter or Friend – Any or all of these losses in life. They are common and expected but not hoped for losses and we grieve.
I do not know what I am hoping to gain from this experience. For me, having spent a great part of the past few years caring for Cheryl, it may simply feel comfortable to help others.
The program itself which has a website and an abundance of videos and formal presentations seems to be aimed at guiding the participant toward some stable existence without whoever has left this existence. In many ways much of that journey occurred with me while Cheryl was struggling with her Parkinson and her accompanying dementia. I purposely try to remember things we did before her Parkinson. Sadly, perhaps because those are are farther in the past or perhaps because the Parkinson and dementia were so overwhelming during the past six years or so, this memory exercise is hard. I still make the effort.
It is not so much that I want to forget the past few years but it is very important for me to remember the fun we had for the few years prior. Those are the years when we hiked in parks and through the woods. Those are the years we out bid everyone for overnight hotel stays. Those where the years when we hopped in the car suddenly on a weekend and drove to Illinois because a grandson was coming. Those where the years we hopped in the car and drove to Indiana because a granddaughter was coming. Those are great memories. And when I purposely think about those times I do not see her deathly ill face.
Cheryl still lives in me and I do grieve for her but I think the long time we had with Parkinson and cognitive issues (I think) helped me to come to terms with her eventual death. She was very much not the wonderful person I spent fifty years of my life with during the last six or so years as she drifted deeper into dementia. I have written this before to myself but I am happy for her that she is gone. She is in fact not suffering anymore.
And with that thought I do wish for her to be here with me. Happy. Disease free. Without encumbrances. Without walkers and canes and wheelchairs. I wish she was her slightly overweight but curvy self wishing to lose a few pounds by doing water aerobics. I wish, I wish, I wish.
I have let her go but I still grieve for her and will always. How can I not?
GriefShare emphasizes that grief is a journey. Life is a journey too. I use a picture of us that my daughter took of us just a few years ago as we walked back to our spot after completing a fund raising walk for Parkinson research. I still use it and another version where Cheryl is ghosted. We are still journeying through life. She is still with me. I hear her admonish me for being a stinker because I am upset about something, usually a trivial something maybe yelling at another bozo driving along. She would tell me to calm down while she was still riding with me physically She is still traveling life with me even though she is not here. I still talk to her. I think of grief as a nuance to life’s journey.
Grief will always be there. My sister died in 2008 of MDS a form of blood cancer. My father died a few months before that in 2007 of colon cancer. My mother died in 2016 of old age. My brother died in 2020 of heart failure. Grief will always occur in life. It is one aspect of the journey.
At this stage of my life I search for purpose. A few years ago as Cheryl’s situation worsened I convinced myself that my purpose was to take care of her. That was true but I am beginning to think that there is more. I am wondering what that more is.
This picture gives me writer’s cramp (whatever that could be.) The image is powerful by itself. The other graffiti merely enhances the photo.
As I work my way through this early period after Cheryl’s death, I notice that poetry, music and simple art speaks to me internally. This piece by “Banksy” who is a mysterious graffiti artist in England is one of those. Recently another version of the image is in the news in a smash and grab robbery story. I was reminded of this image that I saw somewhere some time ago. This image is from 2004 well before Cheryl’s Parkinson appeared. She was passionate about deep water aerobics then. Life was good. We were good. The kids were good. The world was just plain good.
Another version of this same image was sold at Sotheby’s and shredded at auction. Its name was changed to “Love is in the Bin” and it was sold for 18 million pounds.
There is something philosophical about spending a very large sum of money (made of paper) on an artwork (made of paper and wood) neither of which will survive very long in the big scheme of things. So much in life is fleeting and impermanent.
I wish I had 18 million bucks and could buy back a healthy Cheryl.
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.
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.
On this anniversary of ours, the first after you died, the first after you traveled to heaven, I am thinking of you and how much I miss you. We had a great time together.
I am feeling a little sad today. Not so much about your death but more so about the fact that you went first. I know that is selfish of me but there it is. I always thought I would go first. I am sad that you went first but happy that you are not suffering anymore.
Occasionally for the rest of the time I am here I will miss you deeply and be a little sad too. I expect it to happen on special occasions for us. I promise to slow down and reflect on our relationship and our time together on those occasions. I feel stronger when I focus on your smile in pictures, many of these I keep in my heart.
Do you remember the trip to the Grand Canyon? That picture is my absolute favorite of you. When I close my eyes that is the picture I see.
The events of this day, August 29th, our wedding anniversary, are still foggy in my mind. It was HOT – I remember that. I remember how your mom had several long tables in your house covered with wedding presents. (I’m using the lamp in my office. I hope you are okay with that. ) I remember how we left the reception party that night early and went to your house to change. I remember some of your neighbors were sitting in the kitchen keeping burglars away. I remember drinking a tiny glass of beer at the reception and thinking ice water or a coke would have been better because it was HOT that evening and I was wearing a rented tuxedo that was tight.
This morning I weighed myself. I will never fit into that tux again.
It was a great day even though I remember few minute details. We stayed in a Holiday Inn overnight before we took our trip to Kentucky.
Our ceremony was at noon. We must have had dinner somewhere before the reception. I have no memory of that. It was a joyous (and anxious) day for me. It was the official beginning of us even though we met four years previously.
I am feeling a lot of love for you today and I want to talk about it. It is not fair that you are not here, so I am writing this letter.
I will put it on my blog so you can read it there if you cannot see all the words through my teary eyes. I put water on your flowers today. They seem to be blooming more and more. I miss you.
Today for example is our wedding anniversary. With Cheryl not here, it just another day.
I got a card from a friend.
My date dyslexia kicked in a couple weeks ago when I made an appointment with my attorney today. I had forgotten the significance of today when I said okay to her assistant,
It seems very strange to me somehow. The house is quieter.
This year marks seventy-five trips around our star for me. That single fact is, to me, remarkable. I want to say that I had not thought about my birthday and the number of years but that is not true.
The first birthday I truly cared about was my fiftieth. Several important things happened that year to remind me that all is not permanent. Cheryl was almost taken from me that year. She was in a serious car accident that year. When I first saw her car afterward I was very surprised and elated to see her alive siting on the curb at the side of the road. Her injuries were such that she felt the need to find some none impactful aerobic exercise to recover. She settled on deep water aerobics and during the fall and winter became an avid fan. The accident had occurred in the spring and as she built herself back up in the summer I found myself accompanying her to the local YMCA where I found a trainer (a kid really) to help me discover a program that was more manly than deep water aerobics for me. I had become fat and slovenly in my forty-ninth year. It was time for a change.
Cheryl on the other hand dearly loved birthdays and celebrated everyone’s birthday with a vengeance. I think her mother gave her that feeling or thought about the importance of birthdays. It was not only birthdays, any family anniversary or event was very important to Cheryl. When her family stood around and sang happy birthday to anyone the song was ended with, “… and many more!”
Cheryl bought me a card some time ago which I found some few weeks before she died. On the front: “Thank you for finding me, charming me, and loving me. Thank you for making me laugh, for being there for me in so many ways, and for always being the best friend I need.” Inside: Dear Paul, (in her hand) “Thank you for making me feel like the luckiest person alive.” Love, Cheryl (in her hand). I keep this card on my bulletin board.
I do not remember nor do I think it is a birthday card but the sentiment goes with many occasions. It merely says “Thanks”. When I found this card a few months ago, I cried a little. This card was from her favorite Dollar store and even though it was an inexpensive one, she had managed to find one with, to me, a very moving message.
So with that same sentiment, Cheryl, I am sorry in many ways that you are not here with us still to celebrate my birthday with me. I am saddened that you were not here to celebrate your birthday in May. Nevertheless I am glad to have known you in this life and I look forward to reuniting with you in the next one. I love you and I keep your heart in my heart. One day our hearts will be together again.
Yesterday we tripped to a couple wineries to enjoy a bottle and some snacks. Today we saw waterfalls.
Don’t go chasing waterfalls, please stick to the rivers and the lakes that you are used to. I know that you want to have it your way or nothing at all but you are moving too fast. – TLC
This song often pops up in my head. It has a good cadence for bike riding and as a result it is on my playlist from Spotify. It has a metaphorical meaning that I interpret as look around and understand where you are before you dash off looking for something better. Another phrase is – the grass is always greener on the other side of the fence. Maybe it is maybe it is not. I suppose that we always want the thing that we do not have. We want what the other guy has rather than merely celebrating with him that he has it and enjoying what we have.
When I would take mom to dinner at a restaurant which has not happened for some time, she would ask me what I was having. This a different form of the same thing. Why would Mom want to be interested in what I was about to order from the menu if she did not believe in some way that it was going to be better than what she was intending to select for herself? Is there something I am missing here? Once I protested telling her what I was thinking about having and made that argument to her. She responded with – I might want to change and get what you are getting. That is a reasonable response.(After we ordered and the food came, often she would take her fork and get a bite of my whatever it was. I loved Mom but that always annoyed me.)
We all have had experiences like this. We all have a fear of missing out (FOMO). We are not missing out on anything. We may be unsure of our decision but that specificity does not imply that the particular decision that we have made for ourselves is the wrong one. That cannot be known or understood until it has been executed. The decision may morph into a learning experience. That is a good thing.
These days as I wonder what purpose this portion of my life is for, thinking about and pondering big changes to my life, I look for the waterfalls.
In the background while I am doing the day-to-day activities of life, various chores, duties near to and necessary for the little part time job I have with a local community college, I think about making larger changes in my situation. Cheryl was all of my day before she moved to memory care. She was a huge part of my day when she moved and had full time care not from me. Now that she is gone there is a vast empty time.
I have thought about continuing with volunteer work or activities of some sort at the memory care facility where she had been. I just do not think I can do that. The memories are too raw. My heart sinks when I think about it. I feel that I am letting them (the patients there) down. I do not know where that feeling comes from within me.
For now, I have filled it partially with bike trips. These trips of 12 or 15 miles at a stretch let me get much needed exercise. They provide solace and distraction. It is easier to imagine the times when she was not sick.
This week I am filling my time with visiting with my sister. We have a commonality in that she became a widow a few months before I became a widower. We support each other in that respect. She was not expecting to lose her husband and I was not expecting to lose Cheryl. Even though it was right in front of me I refused to believe Cheryl would be gone. I have come to grips with that now. (I still do not like it but there it is.) I notice myself talking about Cheryl and trips we made. It is easier as time continues.
Where do I go from here? Should I look for a new waterfall? The pool below the fall is close to the ground but still agitated. Often the stream below is swift moving. When the water joins the river it is moving slower and calmer.