Love and Life

I Remember

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Cheryl and I met at a picnic. It was a blue moon in August of 1966 specifically, but that’s not really the 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 and stuff off of the grill when they hadn’t brought any tools. So I kind of jumped into the breach to fix the problem and scooped the hot dogs up with a couple of paper plates. Cheryl later told me that she thought that action was really clever.

But that is not the important thing that I wanted to tell you about that night. Our meeting was a totally random event in both of our lives then and since that night (58 years ago) we have been together.

It’s sort of amazing when you think about it. I mean in high school, of course when she went back to ICA in Indiana, I dated a couple of other girls, but I didn’t really get serious or even interested in anybody else except for her. Four years almost to the day after we met on that picnic, we got married. I finished up school at Miami. We had kids. She supported me at Miami. I supported her at U. C. The kids grew up. We supported them and they moved out. We had a few years in there when we sort of enjoyed (you know) empty nesting, a few trips, just enjoying life and living. We had two fairly well paying careers and enjoyed a little bit of travel and some other things like that. It’s been a really good life. It’s been a really good life and she is gone mentally and I don’t know where to put that. I do not 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 struggle with that pretty much every day.

She is physically still here but mentally not so much in the last few weeks. Probably not very far from now in a few weeks she will physically be gone, too.

I just don’t know how to think about all this. I ponder this all the time.

I do not know what is next but I do so wish there was a manual. She is still here, but she is not here.

At first it made me feel a little bit guilty, moving her to memory care but I’ve come to realize that if she was still home with me, I would really not have a good handle on being able to help her and keep her clean and and feed her and all those other things that go along with the situation that she’s in at Bridgeway Pointe.

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 or whatever you want to say. I but I don’t really quite know how to express that emotion, but we have lived together for so long. It did not and still does not feel right. Perhaps it never will.

And it’s 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 mean, 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 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 and we have lots and lots of good memories. I am not sure that she has any memory, sometimes it’s hard to tell.

It is very hard to tell where and what she remembers especially towards the end of this past year. She seemed to regress more and more into her childhood. And I don’t know how else to say that. In the middle of the night when I would get up and go to the bathroom, she would wake up a little bit and say, “Jan where are you going?” Sometimes she would say, “Dan?” (you know? )

These past few years have been a trial. I will not remember her this way.

I will remember the trips to the Cincinnatian Hotel.

I will remember Sunday matinees at the Playhouse in the Park.

I will remember the cruise trips.

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.

I will remember pancakes with fresh maple syrup in the morning looking for the ladies room in Hocking Hills.

I will remember the joy on her face when she graduated 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 to Charleston.

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. She had made me a shirt. She was a wonderful seamstress and proud of it.

I will remember the trips with friends to Door County and the Grand Canyon.

I will remember walking to the neighborhood pub after work to enjoy dinner she did not cook and a glass of wine.

I will remember her herding the kids to church on Sunday morning.

I will remember cold weekend mornings alongside soccer fields.

I will remember her excitement when Anna announced that our first grandchild was coming.

I will remember how she cared for me and our family through life.

I will remember many things but I will not dwell on the last few weeks of her time here.

I love you Cheryl. You will always be with me. I carry your heart in my heart. I will remember your smile.

Parkinson’s disease sucks. (Today I do not feel much like carpe-ing the damn diem.) She is slipping from me and I feel sad.

Stream of Conscious – Touch

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Two days ago when I sat with Cheryl in the common area of where she is staying, I noted in my journal that she seems to need touch. I think I do too. On these occasions when she does not seem to be in the present, somewhere in her head she needs to feel, manipulate and touch.

It seems to me that these days Cheryl has to have more touch. That is just my thought in my observations when I see her. I am just sitting with her and seeing how she’s doing. But that is what I see and think. I think also that I need the same kind of touch. I sit there and turn the chair so that I can we can be side by side and I can hold her hand. Doing that action is important to me. I observed that about myself today. Today for awhile, about an hour or so, we sat holding both hands. She was holding my left hand with her left hand and I was holding her her right hand with my right hand and we sat that way for a long time.

I am writing this using an app that I downloaded that transcribes spoken words into printed words. I will see how that goes. It looks like I can write in a crude fashion. I can just send this text to myself via email and then paste it into a document and then spend some time trying to figure out exactly what I am trying to say.

It is hard to describe. What I see and and I mean as I think about what I am internalizing when I’m touching her or feeling as I am feeling her knee. Cheryl has gotten very skeletal over the past few weeks.

Even as she looked around at things in the room and told me some story that I could barely hear because her voice is so soft. There is a lot of ambient noise; television in the main room, television in one or two side rooms, Bluetooth music and the occasional phone call, she would simply just sit holding my hands. She was okay to sit that way. Every now and then I had to move my hand and scratch my nose or whatever and every now and then she would let go and you know touch something else or scratch her nose or whatever. It is fascinating to me as this goes on how much it is important for the both of us to touch each other.

The whole thing about touch is sort of interesting to me. I think we have always had that throughout our married life but as I as we get further in this Parkinson’s journey, the sense of touch is is important to me and I think I really do think it’s important to Cheryl. We are communicating our presence to each other through touch.

She does not resist it. She does resist things that that bother or sometimes hurt her. Her sense of pain can be strong. I am sure she feels pain because every now and then she says stop doing that, it hurts me or something like that, or maybe she’s having a cramp in her leg or whatever the deal is, but simple touch is very different. She will also grimace if something causes pain.

I have been exploring the nuances of touch in my head and I don’t really know how to describe differences of instance. It is interesting to me that it is important to her and me at the same time.

Now if she is sleeping or she’s very tired or trying to doze or she does not feel quite right or she is hungry or she needs to go to the toilet or needs to move, then touching gets in the way. When she was still home here with me, it seemed like we would fight (not the right word) when I was helping her with one of these activities. She would be dissatisfied with any any help that I would give her.

I sometimes just reached over to touch her leg to see whether or not there is anything left there. And I realize that I am holding on to her thigh bone, for example without hardly any any any meat. She used to be a much bigger woman. She used to be a lot fluffier. Just a year ago, I would have had a very hard time picking her up and holding her up and helping her into and out of bed. These days, in some book somewhere, I read somebody describe somebody as a bag of bones, that is a pretty good description of Cheryl. She still has a lot of muscle strength when she decides to squeeze and grab something, but she really doesn’t have a lot of mass. There is little subcutaneous fat left on her body and that too makes me want to touch her just simply so that I know in my own mind that she’s still there and she’s still alive. Without touching her she still in my heart. I think about her all the time but somehow there is a physicality that happens when when I actually touch her.

She is very skinny. Touching helps me to understand.

Carpe Diem.

Things People Said (or say)

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Lately I have been in a deep blue funk, a pile of heaping morosity, unsure of where to go from here. Vocabulary.com writes: When someone is morose, they seem to have a cloud of sadness hanging over them. This word is stronger than just sad — morose implies being extremely gloomy and depressed. We all can be morose at times, like after the death of a friend or family member. Whether you’re morose due to an event or just because you’re feeling blue, you should try skipping or whistling a little tune to perk things up. To find the other side of that mood, I do chores and concentrate on doing those efficiently and well. I am still arranging my little condo into a bachelor pad (for lack of a better description).

While doing chores I play Spotify on the TV or on a Bluetooth speaker I carry with me. A song list called “Classic Road Trip” is long, does not repeat until 700 songs later and sounds like old WSAI without all the Coke ads.

“I Ain’t Missing You at All“ by John Waite has words in it that captured my attention today. Usually the music is just background. This place is so quiet without Cheryl in it. Or maybe there is a hole that keeps me from being whole, nevertheless, he sang, “… And there’s a storm that’s raging through my frozen heart tonight. I hear your name in certain circles and it always makes me smile. I spend my time thinking about you and it’s almost driving me wild and that’s my heart that’s breaking…” I had been singing along but that got to me for a little bit. I had not noticed that the lyrics are generally sarcastic.

But I hear other’s words and relate them to things that I am feeling. I collect them on little scraps of paper. I found several while cleaning up a bit. Sometimes they are words to live by. Sometimes they are clever colorful descriptions from novels. Here are a few. It is up to you to discover the meaning.

To serve is to live. — Frances Hesselbein

Life is about living not existing – Arnold Schwarzenegger

You’ve got to be taught to hate and fear – from South Pacific

Marooned in a blizzard of lies. – social media rant

Oh, to be thirty years old again and have a prostate the size of a peanut. – wistful thinking by an older man.

It is not often that you realize the benefit of talking to close friends, with no pretense, with no excuse. – unknown

This last line I read somewhere. I wrote it in one of my many notebooks. It is very true. Simply being with friends and enjoying their conversation, the conversation past, “how is Cheryl?”, “how are you?”, which are two questions that I wish I were never asked, is generally enjoyable and relaxing. They know that I will volunteer information if I want to do it.

Carpe Diem!

A Sense of Cheryl

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Often when we went to see her neurologist and I talked to him about Cheryl seeing things or we saw the nurse practitioner and had similar conversations, he spoke of sensing a presence nearby. For the past few weeks that Cheryl has been away I have had that same sense of her nearby. It occurs mostly in the morning when I awaken. The sense of her is not always there but it is often there.

I admitted that to myself and others when we met for our support group meeting last night. The concept is hard to describe. There is something about being sensate to this world and being aware of our presence in it that implies to me an additional sense of soul. If there is a soul who is to say two souls cannot touch each other. They could become entangled and affect each other. Why not?

Yesterday I did not sense any of this presence of her. When I went to visit she was deeply asleep. No amount of talking or kissing of ears would awaken her. In the evening when I was home alone after my second visit I felt disconnected. Something was missing. I have no idea what but I felt or did not feel something. It was an emptiness and maybe a little anxiety because whatever it was, it was not there.

On this morning I felt her. I was certain she was awake and aware. When I went to visit, she looked at me and smiled. Maybe it is just fifty-three years of marriage. Maybe it is just a comfortable familiarity and an expectation that she will be with me in the morning. Perhaps it is just a pleasant dream of her that I am waking from. Perhaps it is what is referred to in the Star Wars movies as the force. I like to think there is an ethereal connection between us. We are eternally connected souls. Maybe a quantum connection exists.

Yesterday her end of the connection was off. Today it was not.

Carpe Diem. Carpe Nexum.

Ice Cream

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This morning my thoughts turned to ice cream. Cheryl and I often went out for ice cream in the evening. In two smaller suburbs there was a Dairy Queen in one – she likes Oreo Blizzards – and Aglemessis Bros. which is a small local ice cream and confectionery. She likes black raspberry chocolate chip.

There is a very good story about the second store. many years ago when Cheryl was still working one of her coworkers would have what she referred to as “Grandma’s Camp”. She invited the grandchildren to stay with her for a week in the summer individually so that she could get to know each child without the distraction of the others and the bigger family around that would be there during big family gatherings. Cheryl decided that this was a good, bordering on great idea.

Audrey, Anna’s third child, stayed with us during this episode of our life adventure when she was about seven years. I am unsure exactly how old she was but it suffices to say she was a young child. She was a very early reader which became apparent when I took her with me to visit my mother at the independent living situation she was staying in to help organize her meds for another week. Audrey read some of the names of the medications and was asking me what various ones were for. Mom took a bunch of stuff.

Afterward I took her to Aglemessis Bros. for ice cream. This store has an old fashioned soda fountain style counter in it that you can sit at and watch the folks (soda jerks) dish up the ice cream and sodas. We sat there. There is a big board on the wall listing all of the flavors and other less important information about price. There is also a menu of sundaes and other goodies in addition to a display case for various chocolate delights and chunky chocolate all sold buy the pound. It is a chocoholic addict’s downfall. Audrey looked up at the board and said to me, ” Grampaw, they have chocolate chocolate chip!” I responded yes they do and you can probably get hot fudge on top if you want that also. I did not know at the time that my granddaughter was a chocolate fan like me. (It makes me smile inside when I recall this experience.)

I think she got chocolate sauce on her two scoops of double chocolate chip ice cream as did I and we sat with satisfaction as we ate and watched the activity behind the counter. I suppose that is why I particularly enjoyed bringing Cheryl to the Aglemessis store. It always reminds me of this story. I think tomorrow perhaps I will see if I can bring Cheryl some black raspberry chocolate chip ice cream from there.

From a precocious, chocolate loving, early reading, intelligent young girl to a beautiful young woman, when I think of Cheryl and I going to Aglemessis Bros. for ice cream, I think of Audrey and chocolate chocolate chip.

Carpe Diem.

Poetry and Meaning

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This poem by Shel Silverstein is from an anthology of poems and cartoons published by him with the same name in the 1970s. I do not remember how we got it but I have several books of poetry. Poetry can tell a story, elicit emotion, evoke a memory or simply make one think.

Where the Sidewalk Ends by Shel Silverstein

There is a place where the sidewalk ends
And before the street begins,
And there the grass grows soft and white,
And there the sun burns crimson bright,
And there the moon-bird rests from his flight
To cool in the peppermint wind.

Let us leave this place where the smoke blows black
And the dark street winds and bends.
Past the pits where the asphalt flowers grow
We shall walk with a walk that is measured and slow,
And watch where the chalk-white arrows go
To the place where the sidewalk ends.

Yes we’ll walk with a walk that is measured and slow,
And we’ll go where the chalk-white arrows go,
For the children, they mark, and the children, they know
The place where the sidewalk ends.

http://famouspoetsandpoems.com/poets/shel_silverstein/poems/14836

Hauntingly to me it is a metaphor for life. I do not know where the smoke blows black and the dark street winds but every life has rough spots. Childhood is full of hope and dreams and looking towards a bright future free from cares.

But growth and maturity catches us and distracts us from ourselves. It adds fear, anxiety and worries about things over which we have no control.

Looking back from the end of the sidewalk one sees with great clarity the chalk marks where direction was changed forever.

Or Shel may have been writing with something totally different in mind.

Carpe Diem.

Dance Competition

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A small gymnasium with loud music and time to wait, the pre-dance show is boring. I am glad that I have a book. I am writing facetious nonsense.There is no pre-dance show. It is loud music, unnecessarily so, in a small gymnasium.

The girls on all the teams are enthusiastic and passionate about their routines. As a biased grandfather watching these kids perform I think my granddaughter did the best but two concepts interfere with that assessment, familial relationship and ignorance of the judgment criteria. A rubric would be helpful with the latter. There is no help for the former.

I did enjoy the afternoon with my daughter’s family. Earlier in the day Cheryl had been sleeping soundly in her recliner. I sat with her for a time. She did stir when I talked to her. She did not stir when I kissed her cheek. She did not stir when pulled the blanket from beneath her head and covered her with it. She did not stir when I kissed her good-bye and left to have some lunch before the ride to the competition.

Jazz Dance

Cheryl was safe and taken care of. I went to watch the dancers without concerns for her wellbeing. I thought about how she would have liked to have been there. I made a video to show her later.

Cheer

Carpet Diem

January 6th and End of Life

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Yesterday I put away the few Christmas decorations that I had spotted around. The very last thing was the door decoration that I had carried over to Cheryl at the Harbor. Later I realized I was a day early. Cheryl always did that on January 6th or the weekend afterward. I left a little carved camel and a note “Off to find the star…” in the place where I had set up a small creche that had been my mother’s.

I went out to retrieve the snail mail to today and noticed my note to mostly myself but able to be viewed by my neighbors. In the mail was an envelope from my sister that contained the signature page of her advance directive document should someone need to speak up for her at the end of her life. She has saddled that task on her lifelong friend Phyllis. I am her first alternate.

I visited Cheryl earlier today. She was sleeping very soundly so after sitting with her for a bit and sending her picture to her brothers and sisters, I kissed her good-bye. She did not stir so I left to find lunch at home.

Off to find the star… is a metaphor to me for life and where Cheryl and I are. I am very glad that she is well cared for at all hours of the day and night. Once in awhile I have this overwhelming sadness and grief that sneaks up on me at odd times. This morning it was during the simple activity of making the bed. It is funny how certain chores are taken over by various participants in a loving marriage. Cheryl always did this until a few years ago. Even a few weeks ago as I was making the bed I might be talking to her and encouraging her to select a certain shirt or “why don’t you wear your red jeans today?” Even though I was doing the bed, we would banter back and forth.

I miss that. The star dims with time.

My granddaughter is participating in a dance competition today. Soon my daughter will pick me up to go with her to watch the competition. Cheryl is safe and calm and perhaps asleep. I am off to find the star by myself.

Carpe Diem.

In This New Year

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Be it Resolved:

That I will be the best husband that I can Be but not better than I Am.

That I will be the best father that I can Be but not better than I Am.

That I will be the best grandfather that I can Be but not better than I Am.

That is all I resolve to do in this new year of 2024. For those of you math nerds it is the day after 123123 (12/31/23) and one year after the Fibonacci year 01123 (1/1/23). Those dates may be significant to others who look for significance where there is mere coincidence but for me those dates only mark passage of time. After all the calendar is arbitrary. In the sixteenth century our calendar was adjusted by the Pope. It was adjusted again in the eighteenth century that is why George Washington and a couple other founding fathers have two birthdays. The Chinese standardized theirs in 2017 but in some places it is still 4721 or 4722 depending. There is much that is arbitrary and little that is significant with calendars.

Cheryl was the keeper of our home calendar but lately it was me that pasted birthday labels and marked other appointments and social events on it. In the week between Christmas and January 1st, I would layout the new wall calendar on the dining table and mark birthdays and other carry over appointments on it and then hang it for the last few days behind the current calendar. Lately she was unsure of which part to look at. To Cheryl it is Easter time. I have not purchased a new home calendar. Perhaps I should do that soon.

I have found and am wearing my father’s watch given to him to mark the anniversary of his 25th year where he had worked his entire life except for the bad times in the early 1940’s.

Time passes. Tempus Fugit.

Cheryl is comfortable, settled and safe in the Harbor memory care section of Bridgeway Pointe. Last week we met with a hospice care induction nurse to find the best course of care for her in this new year. I believe that she is getting the best that I can do for her in the new year.

No one can be better than they are. My hope is that I can be the best of what I am.

Carpe diem, tempus fugit.

Christmas Season 2023

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(A beginning of a new life and the ending of an old one.)

This holiday season marks the beginning of a new phase in our life. “We’re in this love together” popped up on the Spotify playlist as I started to write my thoughts. Cheryl and I are in this love together and forever.

For the past few weeks I have been organizing, sorting and cleaning our living space. I have gotten rid of multiple copies of old emails and address lists. I have meticulously gone through rubber banded stacks of old Christmas cards and retrieved pictures, snapshots and photographs. The work has been tiring and emotionally draining. Old photos bring back fond memories and nostalgic remembrances of good times. And some old photos do not. Those photographs distract me into detective mode. (Who is that person? Why were we there?) Even with those questions hovering in the background of my mind I think, look how young we were once. How did we get here?

This year has been a tumultuous one with both love and mental chaos, physical challenges, extra equipment and extra medical help as Cheryl’s Parkinson and dementia seemed to overwhelm her and me. Her good days became fewer. Now, today, Thursday, December 28th, my sister Laura’s birthday, Cheryl is staying in the Harbor memory care section of Bridgeway Pointe. How we got here is a story about the agonizingly slow progression of Parkinson’s disease and the mental toll it takes on many of its victims. It is also a story of how it slowly came to me that although I thought my love could conquer all, there is strong evidence that extra hands and expertise were needed. It is a story for another day.

This holiday period is very different. About two weeks before the Thanksgiving Day holiday Cheryl moved into the Harbor. A week and a half later as I took her to David’s house for Thanksgiving dinner, she was resistant to getting out of Bridgeway Pointe to go to David’s house. After that experience I told the kids and extended family that any more celebrations we had to take to Cheryl. We should not expect her to go to them. (It is too hard for her and for her husband.) Cheryl had settled into Bridgeway Pointe in a fashion that I had not expected.

The rest of the holiday dinners and celebrations I attended without Cheryl by my side. I visit Cheryl every day. The kids visit on many days. Her brothers and sisters and friends visit when they can. It is different. I do not know what I was expecting or what I want it to be, all that I know is, that it is different. There is something missing for me at the celebrations. I think that something is Cheryl’s spirit, her smile, her glee watching the kids open presents, catching up on family or simply delight in the moment. “Don’t it always seem to go that you don’t know what you got ‘til it’s gone?” – these words are from an old song.

From here at this moment in time we begin anew. I do not know what our new life will bring but it will be better for us.

Carpe Diem.