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Trust

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Trust and have faith that the right thing is going to come. This is not my line. Someone said it on TV a couple days ago.

I found myself staring at this thought and wondering where I was going and all the while thinking about St. Valentine’s day coming up. This by the way could allow me to wander down my own personal rabbit hole of date is dyslexia. But I will not do that. I ignored this prompt for a couple days until today.

We have a bulletin board on our hallway to the main bedroom. I made this for Cheryl a few years ago because she needed a place to hang THE CALENDAR. Since she is not home with me I did not bother to buy and hang up another calendar. I use the calendar on my desk in front of me. The board looks a little naked and I hang little tchotchkes that I find as I go through her collections of cards, photos and other memorabilia.

When I am stuck on something, a thought, a problem, a puzzle, my emotion, I leave it alone for awhile to see if my brain finds a solution. I have used this technique throughout my working career. This morning walking back to the bedroom to get dressed and start my day, I passed by a card that Cheryl had gotten for me some time ago. (I know that because her script is still readable.)

On the front: “Thank you for finding me, charming me, and loving me. Thank you for making me laugh, for being there for me in so many ways, and for always being the best friend I need.”

Inside: Dear Paul, (in here hand) “Thank you for making me feel like the luckiest person alive.” Love, Cheryl (in her hand)

These days since Cheryl has very little voice left these words mean a lot more to me than I care to admit to myself. I am not sure when she got this for me. In fact she may not have given it to me. Over the past couple years she would often write a card out and then put it away in one of her collections of stuff to take care of later. The great organizer of our family had lost her organization. When I found it a few weeks ago I put it on the bulletin board instead of the throwaway pile of 20 year old birthday cards and Christmas cards.

Happy Valentine’s Day, Cheryl. I love you! I hope that somewhere in your befuddled head you still understand that.

Carpe Diem.

A Letter

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Dear Cheryl,
Today I got up a little before 7AM. I had coffee, some toast and an orange while working through the Wordle and the Nerdle. I found a reference to Nerdle in an article in the WSJ. You get six chances to solve a math equation. (Something like: 12+35=47) It is my new challenge for the morning coffee experience.
I looked at the list for the day. I had purposely left my journal open to that “Each Day” list I told you about last evening after I watered all the plants. Our finances are okay for now. And some robocaller keeps calling my cellphone from a 651 area code. I did not answer. I also stopped some Amazon subscriptions that I had forgotten to stop when you moved to Bridgeway. I now have enough coffee to last until May, I think. Maybe June.
It is hard to remember to do something(s) when you consume so much of my thought process. I make various attempts to distract myself with other fun things. When I do that I often forget to do other chores that actually need doing.
Also this morning I got out some great northern beans to soak. I am going to make bean soup tonight or early tomorrow. I spent some time looking at various bean soup recipes on the world wide web but ultimately I will probably create my own. I know that you never cared for bean soup because you you were worried about farting. Now that you are there and I am here, I do not concern myself with that dilemma. And I probably will not worry over a specific recipe. Maybe just; the french trinity, a little olive oil, some garlic, the beans and some chicken broth. Season to taste with basil and other spices like cumin for that old sneaker background flavor. I know you are not going to eat any so I can suit my palate.
Some of this I am writing while Michael the hospice case nurse is examining the sore on your bottom and dressing it for you. The aides noted it on your chart info. And Mike is addressing it. If you wonder what he did, he rubbed an antibiotic ointment on the area and put the biggest band-aid on it I have ever seen. I looks like the sores that you rubbed on your butt while sitting on the toilet at home before I got the terry seat covers from Amazon. This sore is right at the end of your tail bone. If you could eat a little more, perhaps you would get more padding there and your tail bone would not be trying to wear through.
I went over to the small cafe that is in the Drake Center for lunch when it looked as though the staff was getting all of you ready for your lunch. I noticed that in the past if I sat with you for lunch or dinner that I would become anxious if you did not eat well. I would try to help my anxiety be helping you to eat and we might even fight if I anxiously awaited putting the next bite of food into your mouth. It was aggravating for you as you worried about disappointing me. It was aggravating to me because I realized that I had removed your last bit of independence. It is better that I feed myself somewhere else without annoying you.
Lunch was good. Something called a chicken club sandwich and some chunky steak fries to go with it. I also got a piece of pineapple upside down cake. I took that home with me for later. My eyes were bigger than my stomach. (I am eating it now while I write this letter to you.)
I paid cash for $9.67 lunch with a $20 bill and marveled as the attendant got out her iPhone to calculate what she owed me for change. I reminisced about teaching rudimentary math and GED topic areas at Southwestern College downtown. The same question popped into my head that popped at least once during every class I taught after the first one there – Why is this so easy for me and hard for other people? And then two things dawned on me – there is no CASH button for her to input how much money I gave to her; there are no numbers on her screen at all, she merely inputs what she sees in front of her (just like McDonald’s). I could tell her the answer but to me, that seemed both impolite and pedantic, so I waited politely.
Afterward we sat together for awhile when we were both finished with our lunches this afternoon. I really enjoyed that. Just sitting and holding hands reminds me of when we were much younger. Do you remember sitting in the March sunshine and holding hands in the woods when the Boy Scouts showed up in that park in Kentucky? That is a great memory of mine.
Know that I love you and I miss you here at home. I wish our situation was different but I also know that you are getting excellent care at BP.
Your loving husband,
Paul

In a Facebook group someone suggested that I write a letter to Cheryl each day. It could be cathartic, she said. Writing and journaling is cathartic. Writing a letter can and does channel ones thoughts. I am writing to her about my day as though she is far away and I want her to be here in my part of the world.

Carpe Diem

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.

Pizza Tuesday

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Sometimes You Can Be Surprised

There are special people in your life that unbeknownst to you are looking out for your welfare.

A wonderful thing happened to me last evening. A friend – I thought Cheryl’s friend – asked me in a text message if I was still going to a favorite pizza place on Tuesday evenings. I am not.

This was something that Cheryl and I started many years ago as a reason to have some time out of the house and enjoy each other’s company without the distraction of other things. We started the pizza tradition on a Friday night twenty or so years ago. Her Parkinson was non-existent. Our favorite pizza store at the time became very crowded on Friday and over time we tried different days until we landed on Tuesday for no other reason than it was not crowded on Tuesday. “Anything goes Pizza Tuesday” was born.

It is amusing as to how little family traditions are born. Our pizza Tuesday was born this way. On some Tuesdays we would try a different pizza store but it was always pizza. Sometimes Cheryl wanted a calzone. On those occasions I would get a hoagie sandwich. But Tuesday was sacrosanct and pepperoni was king. If it did not have pepperoni on it, it did not count as a pizza. It was merely flatbread with stuff on it.

As Cheryl’s disease progressed I kept up our outings for pizza. I invited our good friend and neighbor to come with us. I invited other friends and family. Some nights we had a crowd. Some nights it was Cheryl and me. During the pandemic pandemonium I carried out from our favorite pizza store and we ate around our dining table with our neighbors.

I kept this going for longer than was probably necessary. The last few times we went on a Tuesday evening Cheryl had little mobility and I would push her around in her transfer chair.

But I have digressed a bit. When Mary Jo texted me and asked about pizza Tuesday, I asked her what did she have in mind. After a few exchanges we settled on a time and she and her husband would pick me up. Two days ago, Cheryl had been mostly sleeping away the day as a result of all her activity on Monday. After our chat with Dr. Y she had three visitors in succession. That sort of thing tires her out. Sundowner Syndrome is annoying to deal with in winter but Showtime which she is still able to muster up for an hour or so just plain wipes her out. So on Tuesday she mainly slept. And on Tuesday I went to the bar with Gary and Mary Jo.

Help from Many Others

Two women have been a great deal of help to me over the past couple of years are Cindy and Linda. Both are cousins-in-law. Cindy is married to Cheryl’s cousin. Linda was married to my cousin Frank. Frank is gone from this Earth. Both asked how they could help me spontaneously without me asking for them to help. Men are not good at asking for help of any kind, especially me. Cindy recognized that first and volunteered to come and sit with Cheryl for a couple hours once a week while I went to ride my bike and got some exercise. Linda did a similar thing. I was able to twist her arm to get her to sit with Cheryl while I attended a seminar on caregiving a couple years ago. They will always be front and center in my mind when I think of people who have helped me the most as Cheryl’s cognition deteriorated.

If I look with different eyes I find myself surrounded by caring and kind people just like Cheryl is surrounded by caring and kind people at Bridgeway Pointe. Sometimes you just do not know who will step in to help.

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

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

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.

With Dementia

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With dementia, though I know she has it, I want her to be like she was before.

With her dementia, it is hard to separate what I want to do from what she is capable of doing.

With her dementia, I want her to be organized like she was before.

With her dementia, I want her to wake up and be ready for the day.

With her dementia, I want her to go with me and walk in the sunshine and enjoy the day.

With her dementia, I want her to comb her hair as she likes it to be. Men are not good at hair.

Even with her dementia, I want her to be aware of her surroundings.

With dementia I want her to be with me in the present.

Though she has dementia I want her to help plan our future.

But with her dementia and her associated Parkinson mobility issues little of that is possible. I do not know what is possible anymore and that frustrates me.

If that sounds like a lament to you then I have accomplished my goal.

Whoopadiddee

Carpe Diem.