My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
Today it is two weeks since Cheryl died. I still think of her in the present tense. I suppose to me she is. This morning as I talked to my sister on the phone, she is home now after the funeral service, I told her about my rediscovery of a couple tubs of reminiscence on the shelf in our storage area. The letter that was clearly visible, albeit, upside down in its placement in the tub attracted my attention.
After we finished chatting I took the tub down to look at it and its contents. Inside was a black and white picture of Cheryl in her wedding dress that had been submitted to the Miami Valley Press in 1970. It had been returned to Mr. & Mrs. Paul J. Weisgerber at our residence in Oxford, Ohio. It cost eleven cents to mail. It is a good memory.
I hope she never quits talking to me and directing my attention to things around me. (And smile pictures I did not know I have.)
Today’s daily mass has Cheryl as one of its intentions. So I came for her.
It is quiet. Peacefully quiet. I was okay when Fr. Pat read her name. Tears came though when she was not next to me at the “Our Father”. I could not hold her hand.
Today is Cheryl’s birthday. Happy Birthday Cheryl! Melissa just asked me if you are having Angel Food cake today. Are you? I made your favorite Betty Crocker pound cake mix. I think I got the icing right with Nancy’s help. I followed the Quick Icing recipe in the Dinner for Two Cookbook and added a little margarine. I had some for breakfast. It is pretty good.
I also planted your flowers yesterday. Remember? The fancy purple impatiens that you told me to get on Sunday? They look good by the door. It rained last night so they are not waiting for me to water them.
Cheryl, I find myself listening to Tracy Chapman”s “Fast Car” song a lot. I have no idea why except that it talks about two young people just trying to get through life and their excitement about their engagement with the world both past and looking into the future. For whatever reason it helps me to see your smile. Are you trying to tell me something? I will keep listening.
“There are always problems to face, but it makes a difference if our minds are calm. On the surface we may get upset, but it makes a difference if we are able to stay calm in the depths of our minds.”
His Holiness the great 14th Dalai Lama
Three days later and all the life celebrations are complete. I need some time to just be quiet. Some time for me only to think about Cheryl and maybe I can distract myself from my sadness. I do not know where I am going with that thought. A dismasted ship is a good metaphor. It is still upright. It has not lost its keel in the storm but its means of propulsion is missing.
I need some time to find propulsion. This feels very weird. My life is suddenly empty of a major piece of it. It is very hard to watch someone who you love die. I am not talking about being there at the actual moment of death. A very somber moment for sure but I am thinking about the long process that Cheryl went through.
Reading through my blog, journal entries, pictures and Cheryl’s postie notes to herself, the process took about six years. It was longer than that but that is the time line that I notice as I reread those.
Charlie Brown says it all, “AAUGH! and that gives me license to scream my displeasure at the whole thing and cry a little.
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.
Is what I have written to myself here and there on my remarks (eulogy) that I intend to give at Cheryl’s funeral mass on Monday. I have read them over and over and out loud. I think I do not need the paper but I will take it with me. I have read it to Cheryl. Here and there she rolls her eyes at me. (“Do you really want to say that?) Here and there I simply dissolve into tears and my voice catches (stops actually).
Breathe! (in a larger font and bold) is printed or written in hand on the page where I choke up. There are many of these.
… I love you Cheryl
BREATHE!
You will always be with me. I carry your heart in my heart.
It is possible to keep learning as one ages. I have found over the past few years that as I learned prayerful and careful concepts by taking care of Cheryl, I learned much about myself and my own motivations and along with that my own emotions. Today a new inner desire, perhaps need, has come to me.
Two days ago I received a copy of my collage of photos that I had printed on glass. I remember sitting up late two weeks ago searching for online special printing folks. Cheryl was still alive then. Why it became urgent to get that made at 12:30 AM is not important now. At the time it was an urgency for me. The following Monday morning she was gone.
In anxiety about not having it in time I found Northside Printing a local specialty printing business that specializes in specialty printing. I took my collage to them to have it printed on a big format to display at Cheryl’s service on Monday.
The more that I look at this collection of smile photos, photos of good times and family, I notice that the image of her in ill health and death fades from my memory. It is still there but what I think of first is her wonderful smile. It lights up my heart and helps me move past the Parkinson and dementia.
Often when someone dies, close friends and relatives create a memorial shrine. They do this to help them with the loss. I did not understand the importance of this action when I would see flowers and a cross along side the road but many years ago I found myself near the site of the Oklahoma City bombing and a fence filled with small stuffed animals left as a memorial to all the children killed in that tragedy. It saddened me at the time.
This morning I found myself hunting for the perfect place to assemble my thinking space to remember the good times and Cheryl’s smile.
I have started to do this on the left mirror of her dresser. That is the spot she would often stand to brush and comb her hair. She would pick up her hair spray and shake it a little. That would be my cue to get out of the room so that I did not smell like hair spray. The last step was to spray a little Chantilly into the air and walk through it. My grand daughter Virginia now has the leftover Chantilly. Cheryl likes that fact. She just told me while I was typing this story.
Carpe Diem. And carpe all of the special moments in your life. Later you will savor them as I am now.
I did not appreciate the truth in that comment until the last couple of days.
On Monday as I entered Cheryl’s room at Bridgeway Pointe, I was stricken immediately with a deep grief. Simultaneously with that emotion I was immediately relieved that she was released from her struggle with Parkinson’s and the dementia she experienced in her last years here.
I wanted her to be alive and with me. But not merely alive, I wanted her to be healthy.
I really miss her today. Today we plan her church memorial service. Today I will want to ask her opinion about various things, music, readings. I will close my eyes and ask and listen to her thoughts.
Stay with me today, Cheryl. We can get through it.
Cheryl and I met at a picnic. It was a blue moon in August of 1966 specifically, but that is not the real story. The story is what we have been together since.
High 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.
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 when they had brought no tools. I scooped the hot dogs up with a couple of paper plates quickly enough that the paper did not catch fire. Cheryl later told me that she thought that action was really clever. And by the way Cheryl likes grilled hot dogs, so, I was a hero that night.
Oh what a night – is from a Frankie Valley song – This was a night that changed both our lives and brought us together.
Our meeting was a totally random event and since that night (almost 58 years ago) we have been together. No matter how you think about it, fate, God’s will, whatever, it set my course in life. It set our course in life.
It was the last summer of high school. She went back to Immaculate Conception Academy in Oldenburg Indiana. 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 but we have been intertwined ever since.
Four years later, almost to the day, after we met on that picnic, we got married.
I finished up school at Miami University in Oxford. She supported me at Miami during our first years of marriage. Graduated and with a good paying job, I supported her at University of Cincinnati and she finished her degree in Computer Science.
We raised three children.
We spent a few years empty nesting, enjoying life and living. We had two fairly well paying careers. We enjoyed a little bit of travel. It has been a really good life with lots of memories and now she is gone.
There is an emptiness. That emptiness has been with me for some time and today it is reality. I don’t know where to put that in my heart. I don’t know where to put that in my head. I don’t know what to do about that period. I have struggled with that every day for a few months. At Bridgeway Pointe she was physically still here but mentally not here. And now she is physically gone too.
I just don’t know how to think about all this but I feel relief that she is not suffering anymore. I think about this constantly. I meditate about this a lot. I push away the sadness for a bit and then think about her smile and remember the times we had. The Sunday dinners. The family gatherings. The happy times.
I do not know what is next but I do so wish there was a manual.
She is still here in my heart. She will always be. I hold her heart in my heart. At first it made me feel a little bit guilty, moving her to memory care but I don’t have guilt feelings anymore. I tell myself this but maybe those feelings are still with me. At first I had sort of thought that it felt like I was giving up or giving in or throwing our life away.
I don’t really quite know how to express that emotion, but we lived together for so long. It did not and still does not feel right. Perhaps it never will. There is an emptiness.
It is so hard to see her go. I just don’t know what to do about it. I just don’t know what to do about my emotions. I can’t really put them in my pocket.
I can for a while but then they just sort of spontaneously come out every now and then. I don’t worry about that. I just sort of stop for a minute when I get all choked up and I just simply can’t talk, but I’m getting better at it, accepting and passing by that that deep sense of loss. I don’t know how else to say that. It is just a really deep deep sense of loss.
I love her and she will always be part of me. I have lots and lots of good memories.
These past few years have been a trial. I choose not remember her this way.
I will remember the trips to the Cincinnatian Hotel and the Netherland Hilton Hotel. We had several of those thanks to Nativity’s church festival and the Bid and Buy booth.
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 there was no place to walk in the cabin. And the anchor going out 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 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. There are some rugged hiking trails in that park. Cheryl loved hiking. A trip did not count if there was no hike.
I will remember pancakes with fresh maple syrup in the morning looking for the ladies room in Hocking Hills before we went on our hike.
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 will remember the trips with the Wehrmans to Door County and the Grand Canyon.
I will remember walking to Molly Malone’s pub in Pleasant Ridge after work to enjoy dinner that she did not cook. 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. Tired and thankful that we lived in a great neighborhood.
I will remember her herding the kids to church on Sunday morning.
I will remember cold weekend mornings alongside soccer fields and ball fields and basketball courts and volleyball courts.
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 me and our family through life and how kindness and caring was in the forefront of any of her actions.
I will remember how she cared for her own mother, Elaine near the end of her life.
I will remember many things but I will not dwell on the last few weeks and months of her time here.
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.
Adjunct_Wizard 