love

Close  Friends

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Cheryl has been a close friend since 1966.  Often being a close friend is not considered when talking about a spouse. Why does that not come up? I think love binds friends together.  Good friends have mutual love. Acquaintances have attraction but not love. Maybe they express empathy but not love. It is different somehow.

Close means something near. The opposite of close is far. True for physical distance and feeling. Close also means dear. Close Friends are Dear Friends.

We were friends first and then spouses. This what I think, marriage of friends will last. I do not mean that one will never wonder what if but the what if is not a passion. The what if is merely a speculation.

Every day I have a feeling begins about 9:00 a.m. I feel the necessity to get moving and go visit Cheryl. At the same time, I am certain that she is going to be sleeping and not know that I am there. I am not certain of this but it happens more and more. Fear is, perhaps, a better word. When she is sleeping, it is personally a disappointment. However, I think the closeness that I feel for her is unsatisfied until I see her and touch her. Even if she is sleeping, I can feel my heart and mind calm – she is okay. I have not thought about this before our current situation with her disease.

Maybe this is what I felt when I was working and traveling for work. I especially felt a longing in my heart on the weekend should my travel last that long. It would be very important to get home. Is this homesickness? She was where I was home. During the week while away I could distract myself with work and maybe in the evening a little alcohol. But on the weekends I needed her. Fortunately most of my travel rarely was over the weekend. When I retired it was a comfort to have her nearby most of the time. I needed the closeness and doing things together.

I am thinking about all of this as I struggle with the idea that she is leaving me. And as I have written in an earlier post, I do not know where to put that. So, I am thinking about our trips. I am thinking about our children when they were small. I am thinking about our life. I am remembering the great times we had.

Carpe Memoriam

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.

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.

When She Tries To Eat Her Fidget Beads

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When she tried to eat her fidget beads
I reacted not with excitement but love
When she poured her water in her lap
I came to her aid with love and caring
When she talks so soft I cannot hear
I ask her to use her outside voice
And yell with all her might

She replied I am.
I took her fidget beads with me today
I realized the meaning of out of sight, 
out of mind in her case totally
I got a towel to dry her pants and sleeve
I asked her if I could help her change clothes
No, she said. I did not push.
And I am learning to read lips.

Today she tried to eat her fidget beads
To her these resemble candy.
Touch is more important than being right
Gentle touch and just being

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.

Ennui (un-WEE)

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Ennui is a feeling of listlessness and dissatisfaction arising from a lack of occupation or excitement according to the Oxford entry that pops up when one pokes this word into Google. I have several dictionaries in print form. They are left over from my high school and college days. My copy of the American Heritage Dictionary (copyright 1971) defines it as a feeling of listlessness and dissatisfaction arising from a lack of interest (boredom). It is a small word that conveys a big emotion.

This word was part of the Quordle this morning. I did not get it. It is not part of my regular vocabulary. It is adopted into the English language from the French. The French have a lot of good words that are adopted into English. Altruism or the root of that word is another. Entrepreneur is another.

Words are a fascination for me. I think this word, ennui, is an excellent description of how and what I feel emotionally when I get home from visiting Cheryl at Bridgeway Pointe.

Moving forward from this point I will strive to become more engaged in life around me. Look for things to stimulate my interest. Succumb to various fascinations that I have about the world. Immerse myself in new vistas of my environment.

These last ideas are antonyms to ennui. Introspection is useful. Self-absorption is not. Perhaps I have been too self-absorbed to understand and accept emotional help from those around me.

I will meditate about that today. My son has invited me for dinner.

Carpe Diem.

If She Was Home

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If Cheryl was home with me she would be on my case to get the tree up and drag in the decorations. I do not have the enthusiasm for that activity that she has (had?) every year. I wondered this morning if I really wanted to do that at all. I am gaining an understanding for why many who have lost people that they love deeply may not have as much enthusiasm for the holidays.

I will eventually put the tree up when I think I will be able to do that without tears coming to my eyes.

And that brings up a new/old theme I have not written much about. For the past year I have listened to a lot of instrumental jazz music. New age, Smooth jazz that has no ties or memories from my youth. It is soothing and calming. I suppose I have become a fan of elevator background music.

All the other music that Cheryl and I listened to, her tastes are much different than mine, I like rock, she likes big band standards. I like classical and opera and ballet. She does not. Nevertheless, much of that other music awakens memories and nostalgia. It is hard to see through the watery tears, so, I do not play it as much as I used to play it for myself.

So far, I have my Christmas tree on this blog. These are last years pictures of the tree but the Christmas cactus has opened its blooms for this year. I moved it away from the window that it was shining its beauty out of. And I have reread last December’s blog posts. (deep sigh here.) things have not improved.

This is a selfie from yesterday’s visit.

Carpe Diem

Admission Of…

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What is a good way for me personally to think about, meditate, ponder my own feelings and emotions as Cheryl adjusts to her new environment? I have expressed to others that this change in our lives seems harder on me than her. It is merely a perception but she has adapted and accepts her new digs as hers.

I admitted to myself a few days ago that I felt guilt and doubt about getting Cheryl into Bridgeway Pointe’s Memory care unit. I now think it was the best decision we could make for ourselves. Many people including the nursing staff at Bridgeway have asked me how I am doing.

Dealing with feelings of emptiness…

I feel empty. It is as though a death has occurred.

Every day, all day up until November 15, 2023 Cheryl occupied my waking thoughts. On November 14th she moved into Bridgeway Pointe’s Harbor section room 137. She did not leave my heart but she left. Things were still happening on the 14th but on the 15th when I woke up, I did not have to take care of anybody but me. My day was suddenly empty.

I went to get a haircut and get the oil changed in the car. Two things that I had put off because I either did not remember to do it until it was too late in the day or I could not focus on the day to day activities that one has to do to keep it all moving forward. As I drove off to do those chores I said to myself out loud in the car that I could do whatever today and one of those whatevers could be visit Cheryl.

I suddenly felt empty again. I really hate eating alone.

Connections to others…

For some time now I have focused all my energy on Cheryl and her needs. It is time to reconnect with other friends and acquaintances and lament the lack of a life long friendship with anyone other than my wife.

Perhaps it is time to make new friendships. Have lunch. Drink a beer or two and watch a football game.

Turned inward toward Cheryl for so long…

I was and am still so focused on Cheryl and assuring myself that she is happy and we cared for I was unable to accept the fact that others may be able to do better for her than I could.

I have visited with her each day since she moved in. There is actually nothing for me to do but visit. That is fine but she is off in her own thoughts and delusions most of the day. Once she told me that I needed to take care of myself. (She has little periods of lucidity.)

I cannot always distinguish between watery eyes and simple ego. Both make it hard to see. Ego takes a lot of side stepping to see around. It really blocks the view. Watery eyes distort the view much like looking through a piece of skrim.

What is next?

For now I will devote more time to my part time activity at Mason. There are many things that I want to make sure work correctly for the red level control activities.

I want to write about our experiences more. I may back away from my blog for a bit. Writing about Cheryl and her affect on my heart is still too much. It gives me watery eyes.

I want to set up a work area in my little office space. I have always been interested in electronic things and gadgets. I need to set up a space to do those things – whatever they are.

Today I made bread. Baking is a hobby. I will have to be careful since I am the only one to eat anything I bake. Perhaps I can find others to give my baking to and make a new connection.

Carpe Diem is a motto I need to apply to myself.