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.
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.
It has been exactly four weeks since I have written to you. The days blend together, so, ever since you have moved to Bridgeway Pointe, I have kept a journal of how you appear to me, your moods, your alertness, my thoughts and other things. As I look through this log of information about the past few weeks I noted many things that have happened during the last four weeks.
A couple days after I wrote the last letter, I was enjoying the sunset with some of our neighbors and was a little more inebriated than I thought at the time and fell while getting up from my chair. I admit to myself that I was feeling a little sad when I came home from visiting you that day. I do not know why. You appeared frail and I noted that I cried when I first saw you that day. I suppose that was still with me when I returned home to make myself dinner. For whatever reason I give myself, I found the bottle of vodka that I had in the freezer and added a little sprite to it in a glass. ( I was out of tonic. ) It was sweeter than I like but I imagined watching the sun go down while I was waiting for the casserole I had put together cook in the oven. Two of our neighbors showed up to join me and all was well until I fell on my face. I must have knocked myself out because I have little memory of the incident until I was looking at a fireman who strongly suggested that I go to the hospital. I had no interest in doing that but I gave in and went anyway. Now I have this collar to wear that you see me in when I come to visit. And now I know what an annoying experience that must have been for you when you were taken to the hospital over the past several years. Although I was not hallucinating at night, sleeping was like trying to get forty winks in a busy elevator.
I went to the hospital on Thursday evening. I came back home on Sunday afternoon. Sleeping on Sunday night was wonderful. I made it to six hours before my bladder took me to the bathroom. All of our kids came to visit with me on Friday. Scott gave me a ride home on Sunday. Anna and David and Scott visited you and me that whole weekend. We have wonderful children.
On Monday I was a little stiff and wearing an old set of eyeglasses. I could see okay but not comfortable driving with my new neck apparel. Your sister, Nancy, offered to drive me over to Bridgeway Pointe so that is what happened on Monday, bloody Monday. About every other day of that week you were sleeping when I came and Nancy gave me a ride to visit another day and we rode you around the building that day. You were more alert and Nancy seemed pleased to do it.
On Monday March 25th I went to see Lauren, our PCP folk. Her office called me the Monday after I got home from the hospital to check on me and ask if I wanted to come in for a visit. I admitted to her that I felt a little sad that day and asked her if there was a grief counselor or psychologist I could talk to about me. I am not sure what I want to get out of such an encounter. Sometimes when I leave you to come home I feel an overwhelming sadness. I did that Thursday a few weeks ago. I thought to have several drinks. That was a normal, I suppose, and stupid reaction. I will have to be aware of that when it creeps up on me. Perhaps I should just call Joyce or your sister Nancy and talk about what I am feeling. I am unsure about how talking to a complete stranger or a group of complete strangers will help. Joyce asked me if it affected my manliness when I felt sad and teary-eyed with others around. I replied that it did not bother me so much but I wished that it would not happen. She pointed out to me that you are a very important person in my life and although you have not passed on from this Earth, in many ways you have passed on from me and that is always going to be hard on me. (I think it is not so hard on you because you seem off somewhere else most days when I come to visit.)
Anna had a party for Virginia’s Birthday. She is sweet sixteen now. Do you remember what a cute two year old she was? I spent David’s birthday in the hospital. I wished him a happy birthday when he came to visit me.
Britney called me on the phone one evening as I was driving home from kissing you good night. She said you had slid out of your wheelchair as they were getting you into bed for the evening. Are you having a harder time sitting up in that chair? Or were you in a hurry to get into bed? I remember when you were home with me sometimes you went to bed early and were in a hurry to get there.
On Easter Sunday when I came to visit, You asked me where I was going today. I told you that I was going to Anna’s house for the afternoon for a cookout. I noted this in my journal because of two things; your voice was very plain and understandable when you asked, it seemed to me to be a very lucid thought. After you asked me that, you said; good, I am going to stay here today. (I noted a small patch of lucidity.)
I took the seat cushion from your wheelchair home to clean it on April Fools Day. It needed it. I traded the other cushion from the kitchen chairs with you. The last time I washed it I had to chase the washer around the utility room. It was out of balance after the cushion had sucked up ten pounds of water from the wash cycle. This time I thought that I would just soak it in the utility sink. I put about six inches of hot water in it and added a little bleach to the water. (It looked like you may have leaked a little onto it one day.) After soaking overnight it had these vivid purplish stains on it. There must be some metal in whatever it is stuffed with. Bleach reacts with a couple different metals to produce a purplish stain. Its clean but it looks bad.
This situation we are in, as I watch you become more and more frail. And as I watch you lose more and more weight. This whole process makes me worry about losing the picture in my head of your lovely smile. I have made a new project for myself of making a collage of you and your smile. So far it is pretty good, I think. I printed it out for you here so you can see for yourself and judge. I do not have a copy of every picture. There are many. On the next page you can see what it looks like so far. I am still searching for one or two other pictures that I know I have but with the cleanup I have been doing around our house I have placed them in a safe place where they will not be lost. I have not found that place back yet.
I have learned many things over the past four weeks. Do not drink vodka if I am sad. Beer will make me get up for a trip to the toilet more often and the alcohol is more dilute.
Avoid overnight stays in a hospital.
I am not interested in puzzles. I tried to become interested after one of the trips to Bridgeway Pointe with your sister. (new hobby and all that…) I have had it partially assembled on the dining room table for about two and a half weeks. I am told that real puzzle workers do not leave them dissembled out for that long. All I can say is that I am not that interested.
I am interested in writing more. I have a loose collection of stories that I call a hitchhiker’s guide to parkinson. That is much like a puzzle to me. Fitting it together as a story and memoir of our last fifteen years or so is a goal. Whether I achieve it or not is up to me.
A total eclipse of the sun is a magnificent sight. I shall remember it forever.
My journal is becoming more than a log of you and how you are. Two days ago I felt that my sourdough starter was far enough along to use it to make a loaf. Over that day I came to visit with you three times while I was waiting for it to proof and develop. At the end of the day after dinner and I got the loaf out of the oven, I came back over to Bridgeway Pointe to visit you. This is what I wrote that night when I returned home: I use this book to write about Cheryl and how she is doing but tonight I was disappointed that she was already in bed. I suppose I could sit with her in the darkened room but I sat on the edge of the bed for a short time and held her hand. I kissed her good night and went home disappointed. — I wanted to sit with her like we used to do.
(In the evening, some nights I really miss just sitting with you – maybe we watch TV, maybe we just talk, maybe you beat me at Scrabble, maybe I read a book and you are sewing on some project.)
Cheryl that is all I have for now. I have tried to catch you up on all the doings that happened since last I wrote. Know always that I love you.
I did a stupid thing (my word) and injured my neck. After a couple MRIs and a couple of days in hospital and two neurosurgeons consulting with each other the eventual result is wear this necklace (dog collar) for eight weeks and all will be well.
I have found that I am getting used to it. I can remove it to shave and as long as I keep that up, it is not terribly uncomfortable. But that is not what I intended to write about here.
Few people are satisfied with “I fell” as an explanation for my wearing this device. Most will not hesitate to get more details. Those are all people who know me and know Cheryl’s situation. I must have a group of good friends who are concerned with our well being. I am grateful for that concern. It is also something for which I have not learned to be thankful and say thanks often for the kindness and help. I have an explanation of course, my head is generally somewhere else these days but that does not excuse me from being thankful for the extra hands and help.
So, thanks to everyone in my life who has helped me the past few days. You know who you are. Thanks to others who did not need a full explanation of how I fell on my face. It is an embarrassment to me no matter how many times others tell me that things happen. It morphed into some of us old guys telling stories about how we screwed up and luckily did not kill ourselves in the process. – You think that was dumb, wait until you hear this one I did. – A good discussion was had by all.
Today Cheryl was very active and animated. A friend from church and my cousin-in-law came to visit her and then while we were chatting the music guy showed up to get the residents to sing along and drum with the music. It lifted my spirits for a bit.
I have a lot of extra time. Cheryl is being cared for at Bridgeway Pointe and I hunt for ways to fill my day. I take walks on good weather days, this is one of those. The Spring weather is warming. It is not warming fast enough for me. Every time I walk by my bike to get into the car to visit Cheryl I check the tires just because. My plan for the summer is to ride that bike as many days as I can fit into my open schedule.
This morning I was uninterested in the news of the day. Donald is going to badmouth Joe for eight more months. It is impossible to describe how uninterested I am with all of that. The primary in Ohio is March 19th. After that I will no longer hear about what stinkers Frank and Bernie are and the guy with the construction company may get to drive down and fix the wall. None of those guys are telling me what they plan to do make the world a better place. They are telling me what the other guy is incapable of doing. Politics is sport. Trash talk is here.
Losing interest in network television I woke up Prime video and eventually old TV shows appeared inside of the CBS app. Cheers is an old favorite. The theme song came on and took me back to long ago. Making your way in the world today takes everything you’ve got. Taking a break from all your worries sure would help a lot. Wouldn’t you like to get away? ….Sometimes you wanna go where everybody knows your name and they’re always glad you came. You wanna be where you can see our troubles are all the same.
I sat and watched the very first episode (I think) where the bar burns down at 2 AM in the morning after partying hard at a wedding. Afterward I told Alexa to find the theme song and it politely played that for me before switching to a collection of other TV show themes. Nostalgia on some days is good I think.
Stephen Curry was on the morning news yesterday for a bit. He wrote another children’s book. He commented that his theme is to leave the world a better place. I think that is a good life philosophy. I used to have as a goal to have the money run out about the time I did, but that is a low bar.
Perhaps, “Choose happiness and leave the world a better place than you found it. And when you start something, finish it.” is my new motto, philosophy, theme.
Spring is coming!
Carpe Diem!
—
Cheers Lyrics: Songwriters: Gary Portnoy / Judy Hart … Making your way in the world today Takes everything you’ve got Taking a break from all your worries Sure would help a lot Wouldn’t you like to get away? … All those nights when you’ve got no lights The check is in the mail And your little angel Hung the cat up by it’s tail And your third fiance didn’t show … Sometimes you wanna go Where everybody knows your name And they’re always glad you came You wanna be where you can see (ah-ah) Our troubles are all the same (ah-ah) You wanna be where everybody knows your name … Roll out of bed, Mr. Coffee’s dead The morning’s looking bright (the morning’s looking bright) And your shrink ran off to Europe And didn’t even write And your husband wants to be a girl Be glad there’s one place in the world … Where everybody knows your name And they’re always glad you came You wanna go where people know People are all the same You wanna go where everybody knows your name … Where everybody knows your name (where everybody knows your name) And they’re always glad you came Where everybody knows your name (where everybody knows your name) And they’re always glad you came Where everybody knows your name (where everybody knows your name) And they’re always glad you came Where everybody knows your name (where everybody knows your name)
Today is Sunday. When I was here earlier Cheryl was dozing. She had taken her meds earlier and ate a little breakfast. Often when I come over on Sunday afternoon she is alert and active and talking to someone else who is invisible to me. This day is no exception.
She let me sit with her and hold her hands for a few minutes. Now she has rediscovered a knitted fidget that has beads, a pocket, a loop and buttons. Cheryl discovered this shortly after she moved to Bridgeway Pointe and it seems to keep her interest for long periods. She is struggling with the loop to hook it over the bead and button.
The loop is the most fascinating thing. She loves to loop it around her fingers.
I am thinking about you this morning as I do every morning.
Earlier I listened to and old U2 song – With or Without You – And I realized that these words from this song have a very different meaning to me than the original lyricist meant. I cannot live with you physically. It is simply more than I can handle day to day. Between your Parkinson and the associated memory and dementia, it is overwhelming for me to take care for you by myself. This breaks my heart.
And yet, in my heart I cannot live without you constantly in my thoughts. Often in the morning when I hear some song or part of a song I think of a time when we were younger and this song was on the radio or the group was very popular and what we were doing in our lives. Some of those memories are vague with little flashes of pictures in my mind. The dream ends and I am in our home, alone, without you. I become sad again.
Songs and particular lines from songs often evoke an emotional (teary) response from my heart. Loving you and living without you is a very unsatisfactory feeling.
You were sleeping today when I came to visit. Sleeping so very soundly that I did not want to disturb you. I kissed you on the cheek like I usually do to tease you awake. I know that you do not like me to kiss you on the ear. You did not even stir, not one bit.
I sat in the rocker for a little bit to watch you breathe.
After a few more minutes I left you to rest and came home. As I was driving home I thought to write this letter to you. I have been listening to a collection of songs from Spotify entitled – Songs to Sing in the Shower. Pulling into the garage LeAnn Rimes started singing, “You Can’t Fight the Moonlight”. This line – “There’s no escaping love; Once the gentle breeze; Weaves its spell upon your heart” – stuck with me.
I suddenly realized how much I missed seeing you today. The past couple days you were alert and we were able to sit and hold hands quietly. Yesterday you put your head on my shoulder and we sat that way for awhile. I enjoyed that quiet time with you.
I think that touching you is more important to me than I admit to myself.
Adjunct_Wizard 