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.
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.
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.
One of the hidden benefits of my sister-in-law’s retirement from her lifelong private babysitting business is the fact that Zane her grandson often comes to help his mom spruce up my condo. Zane came yesterday and brought his rock collection. He is so proud of it.
I have many magnification devices and he had none, so, I gave him one of mine so that he could further explore his collection and expand his knowledge of his world. I also gave him a special Rubbermaid rock case to house his collection. He seemed satisfied with both
I snapped a few photos of the future STEM student. I am hoping that Zane will come to help his mom often. And I hope he will keep up his interest in geology.
It is unlikely that his interest in rocks will last throughout his lifetime but it might. Maybe many years from now when I am gone he will remember the good time he had yesterday examining his collect with the special magnifying glass Uncle Paul gave him.
Scott figured out the exposure controls on his phone and took this picture. All I got was a blob of white light. The corona is still quite bright and phones have poor optics.
Leading up to and leading away from the time of totality, the light takes on an odd quality. In much the same fashion as just after a fierce rain storm, a thunderstorm, the light is oddly yellowish. It is dimmer of course but it is diminished and yellowish.
After the eclipse, young people’s conversation was about other things in their lives. My thoughts were about what I had just witnessed. I think I was a little awestruck and underneath the complete shadow, I felt a little sad. The sadness passed quickly as the awe took over.
After the eclipse shadow passed over us the newly blooming tulips where opening back up. The plants had closed their eyes for the night when the moon blocked out the sun.
Sunlight was dim but getting brighter. Little half moons appeared where the sunlight filtered through the bushes nearby.
Mostly though my thoughts went to Cheryl. Cheryl was fascinated with astrological phenomena. I was saddened that I could not enjoy the spectacle with her. I spent some time thinking of her reaction and discussing what we saw. We talked at length about how magnificent the corona appeared once the moon completely shut off the rays of the sun. She noted that she felt chilly when the shadow of the moon was directly overhead. (I am glad she did not need me to get her jacket from the car.) I told her that I noticed that the wind had kicked up somewhat . I supposed because the air was cooler. Many but not all of the birds stopped chattering to each other. I asked her if she had noticed the eerie sunset like quality to the horizon in all directions. This was unexpected for me.
Perhaps this is a way to mentally deal with grief, just simply talk to her. Later when I go to find the northern lights she can see them with me.
Lately I have struggled with the idea that this terrible disease of Parkinson has robbed Cheryl of her smile. To keep that smile present in my mind I have been collecting pictures, old and new, and assembling a collage of smiles.
I am not finished but this is it so far. I will revisit this posting every now and then as I find pictures back that I want to add.
Opening the miscellaneous tools drawer in kitchen can send me down the rabbit hole just like Alice of rock song and wonder land. There are many things in this drawer. All of them have their own memories associated with them.
Before the move to our condo this drawer was much larger. We were less discriminating about which tools to keep and use. Following Cheryl’s ultra frugal idea of we might need it again, we kept many things. In her house as a child and even as we were dating in high school, her Mom kept throwaway plastic utensils. But we all have our little quirks. The picture above has two wire whisks in it because at some point in my life I decided I needed two. Rare has that occasion been but I still have two just in case that situation pops back up.
If I am going to mash potatoes I tend to reach for the handheld electric mixer in the next drawer over. It is way more efficient and quicker. Cheryl liked her mashed potatoes whipped up with a little milk and butter. There is the special two prong fork on the right side of the drawer (prongs are hidden) which is the only tool capable of determining if the potatoes have completed the boiling process. I learned so many cooking techniques from my wife. I can still hear her voice, “Get me the fork to check the potatoes.” Sometimes we would prepare a meal together but often she would shoe me out of the kitchen so that she could do things her way. We all have our ways.
Many nights cooking for myself I think her ways are better. And I was able to have a glass of wine and set the table. I think food tastes better if you do not have to do it yourself.
I did use the potato masher a couple times recently (in the last year) while following the meal preparation card that came with the Hello Fresh ingredients. Cheryl told me that she really does not care for sour cream in her mashed potatoes. “The garlic was okay but couldn’t we use milk and leave out the sour cream?”, she once asked. The potato masher was nestled back into the drawer never to come out again.
There are many stories associated with the implements shown in this drawer picture. The can opener came from a Magic Chef party held by a working friend of Cheryl who we met at Taste of Cincinnati. She was single and had leased an apartment in the old Shilito’s department store building downtown. It was a cute little apartment. I have repaired the handle several times. It has memories of better times associated with it.
As I was preparing to go visit Cheryl today, I pulled a ball cap off the shelf in my closet. Fifteen other hats fell on me. Those hats have a similar set of remembrance stories. Those are for another day.
You know of course that you are the love of my life, the place where I am home. I do not say this to you often enough. I am writing it here so that you can read it often if you want.
This morning when I came to you to be home and see how you were doing, Jennifer told me that you had no interest in getting up so after the bathroom she helped you back to bed. This is where you were when I came. I kissed you and you ignored me. You were deeply sleeping. I sat and watched you breathe for a few minutes, hoping you would stir. You did not, so, I kissed you again and told you that I would return later.
Here I am again. It is almost three pm and you are still lights out. I talked to Mike in the hallway outside of the Harbor. He told me that you were still sleeping and he had taken your vital signs. He made a little joke about this being one of those days when you are not participating. He is such a gentle nurse.
As I was ending my conversation with him, I met Rosie Doud. You know, Bill Doud’s sister? She is staying at Bridgeway Pointe.
Even though Mike said you were sleeping, I came to watch you breathe. Maybe you will awaken later when Linda and Regan come. Maybe not. Obviously you need to sleep today. I am glad you did not need to doze yesterday afternoon. We held hands and you told me about something but I did not understand all of your words.
Sleep some more and I will check on you after supper.
Adjunct_Wizard 