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.
I think she trained me to be on my own path without her. I had this thought as I was doing laundry for myself yesterday. Up until about 5 years ago, Cheryl did the laundry for both of us. It became hard for her to maneuver the laundry basket and use her cane or use one hand to steady herself on the wall in our new condo. I started to help her do the laundry. Separate the load into dedicates, colors, whites, etc. she would tell me. We used the bed to fold, smooth and put away.
I still do it her way even though I think of it as my way or the way.
She got me to take over other tasks of everyday living over time.
We took Cheryl to her final place yesterday. Her little niche in the cemetery near her mom and dad, down the hill a bit, a place where I eventually will be too. It is an odd feeling. It’s real but not real.
Eulogy (for reading in Church) – I read this at her celebration mass. The copy that I used has many scribbles and notes to myself. I added those to this. In retrospect, I should have selected a giant font to write it with for the copy I read in church.
Thank you for coming to help us celebrate Cheryl
Cheryl and I met at a picnic. It was a blue moon in August of the summer of 1966. A completely random event in our young lives, this is a story about what we have been together since.
We were meant to be. School friends of mine put together a picnic with friends of hers. Cheryl went because they invited her. I went because my friends invited me. Fate happened that night.
Breathe!
I found myself sitting alongside of her at a picnic table in a dark picnic area in Winton Woods. Both of us were wondering how these guys were going to get the hot dogs off the grill, No tools were available to do so. I scooped the hot dogs up with a couple of paper plates quickly enough that the paper did not catch fire and put them on the table where we were sitting. Cheryl later told me that she thought that action was really clever. Cheryl likes grilled hot dogs, so, that night at least, I was a hero.
This was a night that brought us together and changed our lives forever. Had I understood that hot dogs were going to be part of it I could have been better prepared.
Our meeting was a totally random event and since that night (58 years ago) we have been together. It was meant to be – fate, God’s will, or karma it set our course in life. These past few years I have come to believe that it was my purpose in life to be here and take care of her.
After that summer of high school. She went back to Immaculate Conception Academy to the novitiate program of the Sisters of St. Francis at Oldenburg. (You heard that right, she was going to be a nun.) I went back to Purcell. I dated a couple of other girls but I was not interested in anybody else except for her. I suppose if you believe in love at first sight that was it for me. I am not sure about Cheryl (I sense she is rolling her eyes at me.)
Four years later, we got married.
I finished up school at Miami. She supported me at Miami during our first years of marriage. I supported her at University of Cincinnati Evening College and she finished her degree in Math and Computer Science.
We raised three children.
After the kids left to start their lives, we enjoyed life and living. We had two fairly well paying careers and traveled a little.
With her gone, I feel empty. There is an emptiness in my heart.
Breathe!
I do not know what is next but I do so wish there was a manual. She is still here in my heart.
I don’t really quite know how to express that any other way. We lived together for so long.
I love her and she will always be part of me. I have lots and lots of good memories.
Breathe!
These past few years have been a trial.
I choose not remember her this way.
I will remember the trips to hotels downtown. We had several of those thanks to Nativity’s festival and the Bid and Buy booth. We always bid on the trips and overnight stays – the really great date nights.
I will remember Sunday matinees at the Playhouse in the Park. And the discussions with Mom and Dad in the car and at LaRosa’s where we always stopped for lunch on the way to the play.
I will remember the cruise trips. The 4 day 3 nighter in the bow of the boat with the bed so big and the cabin so small there was no place to walk in the cabin. And then the noise of the anchor chain going out at 4 AM in the morning.
I will remember her happy face as we left Seattle for Alaska. Sitting on the veranda outside of the cabin that was so big it had a separate seating area and two bathrooms. And some guy who could make stuffed animals out of towels and my sunglasses.
I will remember the hiking trips in various parks and the looks on the boy scouts’ faces when we encountered each other five miles from the trail head in Green Bow Lake State Park in Kentucky. And how great lunch tasted when we got back to the lodge after our hike.
Perhaps 25 years ago we began visiting Cumberland Falls every year around our wedding anniversary. The place where we honeymooned. There are some rugged hiking trails in that park. Cheryl loved hiking. Vacation did not count if there was no hike or, at least, a long walk on the beach.
I will remember pancakes with fresh maple syrup in the morning looking for the ladies room in Hocking Hills before we hiked the trail.
I will remember the joy on her face when she graduated U. C. Evening College.
I will remember the tired joy on her face after the birth of each child.
I will remember the trips to Myrtle Beach and during those trips the trips to Charleston. Cheryl loved Charleston and enjoyed walking around the seafront and through the market.
I will remember a Christmas Eve a long time ago when she insisted that I open her gift to me and all I wanted to do was go to bed and sleep after a night of celebration and maybe a little too much alcohol with family. She had made me a shirt. She was so proud of it. She was an incredible seamstress and could not wait for me to try it. (I wore that shirt out but I still have others she made.)
I will remember the trips with our friends, the Wehrmans, to Door County and the Grand Canyon.
I will remember walking to Molly Malone’s pub in Pleasant Ridge after she got home from work to enjoy dinner. Sometimes other friends we knew were there. She had a glass of wine. I had a glass or two of Guinness. And we would walk home to a quiet evening at home to our house on Cortelyou. (Ronny lives there now.)
I will remember her herding the kids to church on Sunday morning.
And cold weekend mornings alongside soccer fields.
I will remember her excitement when Anna announced that our first grandchild, Laurencia, was coming. And David’s phone call from Illinois when Luke was on the way. And Scott’s phone call that eventually turned into Gavin.
And all the other phone calls about babies and other events. Whenever we came home from anywhere she would check the phone for messages.
I will remember how she cared for her own mother, Elaine near the end of her life.
Breathe
I will remember how she cared for me and our family through life and how kindness and caring was in the forefront of any of her actions.
I will remember many things about our time together but I will not dwell on the last few weeks and months of her time here.
I love you Cheryl. (breathe)
You will always be with me.
I carry your heart in my heart. (breathe)
Breathe Again!
I will remember your smile.
…
The church was pretty full yesterday. I was gladdened that so many of her friends and family were able to come and help Anna and David and Scott and I celebrate Cheryl for a little bit.
I wrote and rewrote this tribute to Cheryl and our life together over the two weeks between her death and the date of the celebration Mass. I could feel her with me somehow when I stood at the lectern in church (which she called the ambo. Why are there so many names for the same object?)
Last night was the first night she spent in the cemetery. And I am awake thinking of her and yesterday’s evens at 4 AM.
This morning one of the residents who lives at the Harbor with Cheryl called for help with a deep longing in her voice. From deep inside her soul she longs for help. She does not know what that help is nor what she needs. She is mostly deaf so the aides trying to help and distract her are using their football stadium voices to communicate with her.
Another resident responds by asking about what help she needs. Her request is repeated by others. There is a deep longing for help. Cheryl is dozing off and on. Her request for help has become part of her dreaming.
They were getting organized for luncheon. The atmosphere left me with an overwhelming sense of disconnect and sadness.
My brother-in-law’s wife recently had some surgery to her neck and over the past couple weeks we have exchanged text messages and visits. I ask how he is doing and how my sister-in-law is doing. Often I send him my latest picture of Cheryl at Bridgeway Pointe. Yesterday we had the following exchange.
Thanks for sharing. Tari still has lots of pain !!! I am tired and frustrated !!! How are You ?? — 2:36 PM
Not tired and frustrated. With little to do for Cheryl, I think lonely and broken hearted. Is Tari home or in rehab? How did that turn out? — 3 pm
Rehab did not go well. Tari is home now. Waiting to see about Home Health Care. — 4:29 pm
In home physical therapy sessions? — 4:30 pm
I guess. Not sure. –4:31 pm
I wrote lonely and brokenhearted to him. It was the first time I admitted that to anyone.
I get up in the morning and realize again that I have no particular schedule. Nothing that I have or want to accomplish this day. Three weeks ago my day was centered around Cheryl. I made very few specific plans for me that did not include her somehow. I focused on getting her going, up and out, onward and into the sunshine. In the Autumn months when it is still warm, just four weeks ago, I conjured little trips to the places where we used to walk. I did carryout from a little chicken place nearby sometimes and we had a picnic. Her in her rollie chair and me waving the bugs away. In September I had my picnic supplies in the trunk of the car so that we could do that spontaneously (Carpe Diem). My main goal for each day was simply to get her out into the sunshine somewhere.
A new attitude is my goal today and the rest of my days. I need to be less broken hearted. Lonesomeness I think I can deal with. That feeling will come and go. Cheryl is safe and well cared for at Bridgeway Pointe.
Carpe Diem. Cheryl is safe and well cared for at Bridgeway Pointe. (Repeat)
What is a good way for me personally to think about, meditate, ponder my own feelings and emotions as Cheryl adjusts to her new environment? I have expressed to others that this change in our lives seems harder on me than her. It is merely a perception but she has adapted and accepts her new digs as hers.
I admitted to myself a few days ago that I felt guilt and doubt about getting Cheryl into Bridgeway Pointe’s Memory care unit. I now think it was the best decision we could make for ourselves. Many people including the nursing staff at Bridgeway have asked me how I am doing.
Dealing with feelings of emptiness…
I feel empty. It is as though a death has occurred.
Every day, all day up until November 15, 2023 Cheryl occupied my waking thoughts. On November 14th she moved into Bridgeway Pointe’s Harbor section room 137. She did not leave my heart but she left. Things were still happening on the 14th but on the 15th when I woke up, I did not have to take care of anybody but me. My day was suddenly empty.
I went to get a haircut and get the oil changed in the car. Two things that I had put off because I either did not remember to do it until it was too late in the day or I could not focus on the day to day activities that one has to do to keep it all moving forward. As I drove off to do those chores I said to myself out loud in the car that I could do whatever today and one of those whatevers could be visit Cheryl.
I suddenly felt empty again. I really hate eating alone.
Connections to others…
For some time now I have focused all my energy on Cheryl and her needs. It is time to reconnect with other friends and acquaintances and lament the lack of a life long friendship with anyone other than my wife.
Perhaps it is time to make new friendships. Have lunch. Drink a beer or two and watch a football game.
Turned inward toward Cheryl for so long…
I was and am still so focused on Cheryl and assuring myself that she is happy and we cared for I was unable to accept the fact that others may be able to do better for her than I could.
I have visited with her each day since she moved in. There is actually nothing for me to do but visit. That is fine but she is off in her own thoughts and delusions most of the day. Once she told me that I needed to take care of myself. (She has little periods of lucidity.)
I cannot always distinguish between watery eyes and simple ego. Both make it hard to see. Ego takes a lot of side stepping to see around. It really blocks the view. Watery eyes distort the view much like looking through a piece of skrim.
What is next?
For now I will devote more time to my part time activity at Mason. There are many things that I want to make sure work correctly for the red level control activities.
I want to write about our experiences more. I may back away from my blog for a bit. Writing about Cheryl and her affect on my heart is still too much. It gives me watery eyes.
I want to set up a work area in my little office space. I have always been interested in electronic things and gadgets. I need to set up a space to do those things – whatever they are.
Today I made bread. Baking is a hobby. I will have to be careful since I am the only one to eat anything I bake. Perhaps I can find others to give my baking to and make a new connection.
Change happening over a period in time. This is the word of the day from Anu Garg who has been publishing “A Word A Day” since 1990-something. He started in college.
I wrote the following story almost two years ago. I found it back looking for something else. It tickled me then when I wrote it then but reading this and thinking about Cheryl’s current state has dramatic contrast. It makes me wonder how much longer? Diachrony makes no reference to how long the period.
Black Underwear
In my new life as caregiver, I have developed several routines. Friday is laundry day. In the “delicate” load was a pair of black panties and a black brazier. And then my mind wandered off into the weeds.
When we were much younger and it was early in our marriage, I let slip to her that black underwear was for me a big turn-on. Through out our younger lives she kept this in her heart. She would let it be known through certain hints, glimpses in the mirror or direct conversation that this was a good night for what she referred to as intimate time.
On various date nights or other occasions the clue phrase was “I am wearing black tonight”. Somehow the wine in the restaurant tasted better. The conversation was closer. I quit seeing the surrounding tables. I quit hearing the surrounding conversation. I guess pheromones intermingled with testosterone does that.
Sometimes I would initiate the contact. Is this a black night? No, she responded, I thought red would be more appropriate. Well it was! It is hard to go slow and stay with your partner when she is wearing black underwear. Much more so when she is wearing red. Holy cow, I miss those days.
I guess she does too. A couple days ago, I do not recall where we were off to, but I was pecking away at this computer and she, after finishing her shower, stood in the doorway of my home office wearing only the two items that were now in the load of laundry I am folding to put away. “I’m wearing these today”, she announced. My brain went spiraling off into the weeds. Holy cow I miss those days. Sorry. I am repeating myself.
Even now I am distracted by those thoughts. Our intimacies in many ways are much closer now even though less sexual in nature. Love is a lot of things. Only a small part is sexual.
It is hard to express how much closer this journey has made us. It is hard to express how this illness has opened my eyes to things in her that I did not notice before. I am more aware that my words can hinder her. I am more aware that my words can hurt her.
This is an eye-opening experience for me as well as her. I have taken on many of the domestic day-to-day tasks – laundry, cooking and others. We have hired out the cleaning to my niece who has her own cleaning service going. We moved into a condo situation so that lawn care and building maintenance is contracted. I am amused by the fact that I have become somewhat protective of my own methods and how easily I become annoyed when she or anyone else critiques my method.
She takes care of me as much as I take care of her. I miss the younger us. I miss the crazy running around chasing kids sporting events. I miss the, “I’m wearing black tonight.” And the opportunity to make more kids. But I really love her in this moment. I just hope I am able keep caring for her and I as fear for the worst outcome, and cannot fathom why my feeble brain goes there, I realize how deeply I love her.
The black underwear still looks good.
That was written in January of 2021. These days she can barely stand much less lean seductively in the doorway in her underwear.
This morning I am thinking about the little incremental changes this disease of Parkinson caused in Cheryl. The trees in these pictures are maples and they are turning with the season. It is not apparent in the big picture as they show below but zoom in and each individual leaf has a tinge of red around the edge of the leaf. The green still remains in the core of the leaf. Little incremental changes as the leaf begins to shutdown for the season.
Tonight and on days since I started this essay, I am thinking about the little incremental changes this disease of Parkinson that has invaded the person I most want to be with, the person where I am home, has caused in me. Our green area is smaller. And yet at the same time it is still green.
It is my goal to talk to her on a level that is her. Sometimes her behavioral response to some situation can appear childish to me. It has only recently come to me that I must ignore that perception and talk to her as I once did. Almost every morning when I wake her she will ask, “Can we still get to church?” or “What time is church?” I used to respond with, “There is no church today.” Sometime in the past I decided that response was unhelpful. These days when she asks me about church I take that to mean, “What is on the agenda for today?” She has little memory of what we may have discussed doing on the previous evening when we went to bed.
Aphasia appears often. When she is telling a story it is very important to her to get the names dates and places correct, even if she is way off the mark. Her mother is no longer on this Earth nor is her sister Janice. Cheryl tells stories about them or visiting with them in the present tense. Once in awhile I might tell her that her mom is in heaven. She will respond, “Are you sure?” That question reminds me that it is unimportant to correct her perceptions. I have a difficult time resisting the natural male response of – bullshit that is not the way it is.
It appears to me – just observation – that although she can read, the words are mostly meaningless. It the morning over breakfast we look at the newspapers. For me that is the Wall Street Journal. For her that is the Cincinnati Enquirer. I have two observations; She does not recognize that they are two different papers. She is unable to comment on articles that she may be looking at in the paper. (I have asked.) The particular article might be about some city council fiasco. She will tell a story about Sr. Janet and what the newspaper tells Cheryl about her job with the parish office.
I know there is some green still left in the middle.
I am thinking about how it has changed my focus. I used to worry about how late she slept in the morning. The why of that worry always comes back to how much sleep I will get that night. Those two ideas are connected only in my mind. They are not connected in practice.
It changes my perspective. There is a bigger picture. Just like these trees on our property, when one zooms in one sees the differences in the leaves but when one zooms out one sees beauty.
It changes my interest. What can I do to enable her to reminisce even if her memory is weak? Perhaps I can aid her reminiscence. Comment about her stories to get her to tell me more.
It changes my observation of the universe. There is beauty everywhere you look. Cheryl is always telling me about the moon when we are driving somewhere. I look too. She can see the moon in the clouds. So can I if I look carefully and listen to where she says she sees it. A shape in the clouds looks to her like the moon. I long to see through her eyes.
Maybe I could read to her rather than watching her struggle to understand printed words.
It is not really very early but Cheryl is still sleeping. I have given her her first meds of the day and she lays back down for a bit to let them work on her. I crush her meds and stir them into vanilla pudding, some of that stuff parents put in their kids lunch. This is a new thing and for the past couple mornings it seems to be working.
My trip out west to visit my sister has planted a bug in my mind about tracking down cousins that I have not chatted with since childhood. I do not know where that came from but maybe it has to do with thoughts about family and as families spread connections are lost. Maybe the fact that a couple of my same last name cousins came to visit with Joyce and me in Oregon. Maybe I just do not know.
Nevertheless, I reached out to a couple cousins who are not the same last name. I will see where this goes.
One evening this week our three children came over to discuss what is best for their mom. It is a hard discussion. Cheryl was part of it. As we came to understand and accept the few decisions about Cheryl’s future care, I sensed a peace, a calmness descend upon my soul. Cheryl needs more help than I can give her consistently. I do not function well with little sleep.
That meeting took place a couple days ago. It may be my imagination but I sense that Cheryl is slipping away. She slept unwell overnight which in and of itself is not unusual but today she is sleeping the day away.
Carpe the next Diem. This one appears to be lost.
Maybe my night is lost also.
Writing that last line has put me in mind of controlling the things I can and letting go of trying to control the things that I cannot.
I started a single line entry in my note book a few days ago with this single line – A thousand thoughts and prayers amount to less than a single action. It was a thought for the day from somewhere. I get a lot of newsletters and other useless email. This was included in one of them.
People say or write it to each other all the time, ” My thoughts and prayers are with you.” For those who are unable to write or say actual words there is the text-message hieroglyphic picture of praying hands which Anglos interpret as prayer but Hindus probably interpret differently. I do it too. Is it cynical to think of it as a shallow and ineffective response to a request for help of some sort? Caring and caregiving are two very different concepts.
The kitchen garbage can is full. VS. Please, John, take the garbage out. Most will think this a bad example but I do not. The first is a description of a condition. The second is a specific request to a specific person.
Most of us are not specific about any need that we may have for help. It is unusual to make a specific request. It is very typical to talk about our own situation or describe some condition that we are in. Few will volunteer to help without a specific request.
Grace and peace be to all of you who help Cheryl and I without a specific request from us. We love you dearly and thank you for your gracious help.
We do not know the other person’s situation. We are not walking in their shoes. We are not taking their path through life. Let us all listen closely and ask, “How can I help?”
Adjunct_Wizard 