A Story from Two Years Ago

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I wrote the following essay about two years ago. I put the first draft of my book about Cheryl and the last five or so years of her life together in the form of my web log essays and stories gleaned from there and my journals.

I am letting my book gel in my brain for a while and as I do this I occasionally reread an article that I wrote sometime ago. Cheryl often comes into my thoughts and explains her side of the story. It can be and often is a mystical experience.

Apathy and Living

Has she apathy? As we move forward it seems to me that she cares less about day to day activities. She seems to recede into her own thoughts but not as a prevailing occupation. I think of it as apathy-not-quite. When she gets in this mode it’s often temporary. She is tired from some activity.

Specifically activities like taking a shower, getting cleaned up, physical therapy sessions or exercise classes are obviously tiring for a PD sufferer. Something as easy as thinking about what is next seems to tire her out also. It like a temporary apathy. Procrastination?

It starts with, ” I don’t think I can go to… exercise class, church, physical therapy…” Admittedly it takes a lot for anyone to be motivated to exercise. It was not a big part of our lives when we were younger. Neither of us were sports buffs. My main sport is riding my bike. There is a solitude to doing that which I am unwilling to give up or share. As her care partner, it is frustrating for me that she cannot observe how much she is helped by exercise and her PT sessions. She seems to not remember. It seems like she is going merely because I am taking her there.

When Cheryl gets in this mode (mood?), I turn the corner to something else. I am resistant to letting her go on and isolate herself in her little office area thinking, punding and organizing. I take her out. Anywhere works as long as it is out of our condo.

Yesterday I took her one of our local county parks that we have not visited for a long time. Afterward we went for ice cream at a nearby Dairy Queen. I had planned to make dinner at home but she suggested we find barbecue somewhere. This being an odd suggestion because it seems to upset her stomach often and she says never again later in the evening. We did not find the barbecue place to be amenable to folks with mobility issues so we landed at one of our old favorites and ordered something different than we usually get so the newness was preserved. On the way home she thanked me for taking her to Lake Erie and she told me a story about when she was very young.

In the early days of her father running his own gas station which was a life long dream of his, he rarely took any vacation time. It seems one of his friends had a vacation cabin up near Lake Erie and not far from Port Clinton. There is a park nearby called East Harbor State Park. Our walk by the shore of a much smaller lake in the park much closer to home than Lake Erie must have taken her mentally back to her childhood and a very fond memory. We visited the same area a few years ago and visited East Harbor.

She talked at length about the trip with her mom and dad. She thanked me for getting her there and back in the same day.

I started this writing and contemplating apathy, but maybe it’s projective (mine) apathy? Or predictive apathy? Or apathy is the wrong word? (indifference? passivity?) Or is it poor sleeping patterns? This morning she got up at quarter til ten which means that she was in bed for about eleven hours. She awakened this morning from the same position she fell into when she got in bed. On the previous evening she went to bed very late after midnight and slept very little. (As a result I slept little also.)

Is apathy and memory related? I wonder about ideas like this. Perhaps she cannot remember that she seemed to enjoy herself the last time we went there? Wherever there is.

When I finally teased Cheryl awake this morning, she opened her eyes and asked, “Is Mary Pat here?” An amusing opening question about the day. I smiled and told her, ” No Mary Pat is not here. I think you were dreaming about her.” I have no idea where the Mary Pat (a childhood and current) friend thought came from but she has talked to her a couple times over the past few weeks.

I encourage her to talk to her friends when she gets excited about some memory or misconceived thought. Many of them have had strange conversations with her about things. I used to be embarrassed for her and, at first, discouraged these phone calls which she often decides to do later in the evening. But as I thought about it I decided that it was not my place to absorb or accept or become embarrassed for her. Her friends know her state of mind. They are wonderful people and she is blessed to have them as life long friends.

Focus, cognitive abilities, caring, likes and dislikes are all related to memory issues. Staying active, no matter how small that activity is, helps.

Carpe Diem. Written July, 2022

The picture is from the same time that summer. Parkinson Community Fitness had a luau party.

Carpe this Diem.

Calendars, Checkbooks, Organization

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On Saturday, sometimes on Friday, I look at the checking account and check the bank’s math. These days when I do this I think of Cheryl and reflect on how she was able to show me how to do the family finances. Over the past few years she showed me how to do other things too.

Cheryl and I went to Saturday afternoon mass. It was better for her schedule wise to do this on Saturday. I typically go to mass on Saturday since she has left. Mostly to think about her and to talk to her there. This day is the beginning of festival season and there are now five festivals in the combined parish. Sr. Carren used to bring communion to Cheryl and she asked me to attend the first festival with her.

It was a good time. Several other parishioners that I knew came also.

Now I am in church for the second time this weekend. The mass today is for Cheryl. So, as little time I spend praying, I am praying with her today. Some have said pray for her but I do not think that she needs prayer. I do pray with, think about, ponder, meditate about and spend time with Cheryl. I carry her in my heart. She is with me today. One of her favorite hymns was the opening song this morning.

As I quietly sat before mass earlier I thanked her for encouraging me to do all these chores that I had not done before. I found myself talking to her in the quiet of my mind. It was comforting.

Not only do I do the chores for myself now but I also make a list of what those things are so that I do not forget any. Cheryl showed me how to do that also.

Carpe Diem

She Made Me think for a Bit

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Have you ever lived on your own before?, Natalie asked me. An innocent question on her part, I am pretty sure. We talk about sundry topics while she is cleaning. I appreciate the fact that she wants to know more about me. I think.

She made me think about it. The answer is no. I moved out of Mom and Dad’s house to our apartment in Oxford. Cheryl was slightly more experienced.

She was resident at the high school she attended but lived in a dormitory situation with many girls around her there. She lived at home in the summer. She had a tough guy for a dad who told the head of the novitiate program that when Cheryl was under her care she would do what she said and when Cheryl was home for the summer she would do whatever he said. That was after some discussion about dating boys.

Thanks, Bob.

Natalie’s question added nuance to my current situation. Another background spice that makes the flavor so new to me. I am 74. I have never in my entire life lived by myself. So far, it is not bad and yet it sucks too. Maybe I need a list.

PROSCONS
laundry can lay around until laterdo own laundry
cook own food – experimentcook own food
do whatever during day, no rulesno schedule, no rules
go wherever during dayable to eat ice cream for breakfast
get up whenever – early or latemake own bed
only thing holding me back is meonly thing holding me back is me
only consideration is mehome feels empty
I am sure there are more.

Maybe I do not need a list. Although a list does make me think of Cheryl and her lists. I have kept many that she made and put in her office when I cleaned it up.

There are pros and cons to those thoughts also.

Carpe Diem.

Concerned about What is Unknown

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I just heard. Are YOU doing okay?

That question annoys me when coming from anyone other than close friends or family. My first thought is to say, of course I am not okay, you dumb shit. My wife, the love of my life, the person that makes me whole,  the place where I am home has gone to heaven and left me here to deal with the dumb shit questions about how I am doing. But, I do not respond that way. I merely respond with, I am okay most days.

That truth is how I think about it. Some times I am saddened when I think of Cheryl, however, most of the time I am happy for her. She was very ill. It would be better maybe great if she was still alive but not with the health situation she was in. She was sick. She was eating so little her body was consuming itself to stay alive. And although I feel guilty about admitting it, I am happy she died. She truly is in a better place. No bullshit about it. She knew she was dying for awhile. She told me about it a few months before her actual death.

We do not talk about death as a society. Christians believe in an afterwards. When this is done there is more and it is better. Other religions have similar beliefs. I personally am not so sure. (If it’s better afterwards why is it a sin to commit suicide?) Maybe Ronny Reagan is right. But what if he is not? Lots of philosophical ideas there. Plenty to think about.

Cheryl and I talked about it a couple of years ago. I think that it occurred to her that she needed to make her wishes known to me so that I could do it for her. After death discussions with Mom, it was not so upsetting to talk about it all with my wife. Cheryl was focused on the actual service. I was focused on the practicalities of burial and cremation. At the time she still had long periods of almost normal cognition and she recognized that it was lessening. Imagine how scary and upsetting that would have been to her. She never offloaded any of her personal grief about her disease on me. Looking back it was another kindness that she used to protect her family from sadness.

I wish I had spent more time with Cheryl talking about hymns and prayers. She cared greatly about the service. I wanted to ask her things when we had the meeting to discuss what and who. The kids were great. They knew Cheryl’s wishes. I suppose she was talking to them as well as me.

I started this thinking about how annoyed I am with the question about how I am doing. Cheryl just told me to be kind.  Most folks do not know what to say or how to respond to news about death. Mostly they are thinking, man, it must be hard. And it is but my perspective is different and I am doing okay mostly.

Michele Obama’s mother passed away recently. She was 86. No cause for her death was given. (said a stupid news reader.) Why is a cause important? Is there a solution to old age other than death?

Carpe this Diem and the rest that you are given.

She Talks to Me

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I think of Cheryl often each day through the day.

I think she trained me to be on my own path without her. I had this thought as I was doing laundry for myself yesterday. Up until about 5 years ago, Cheryl did the laundry for both of us. It became hard for her to maneuver the laundry basket and use her cane or use one hand to steady herself on the wall in our new condo. I started to help her do the laundry. Separate the load into dedicates, colors, whites, etc. she would tell me. We used the bed to fold, smooth and put away.

I still do it her way even though I think of it as my way or the way.

She got me to take over other tasks of everyday living over time.

Another kindness she did for me.

Carpe Vitae

6 Valedictorians, 15 Salutatorians

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Wow. The folks in charge of it all gave all six kiddos a chance to speak, two minutes each, a common theme. They are all very young. They all have vast horizons in front of them. Carpe Diem!

Curiosity,  love,  kindness, passion and compassion when do these ideas fade?

They are a big group of graduates. Audrey was in the fifteen Salutatorians. They did not get the opportunity to speak and that is too bad because I am sure that they are full of curiosity, love, kindness, passion and compassion. I am also sure that the other more than 500 graduates are also full of those aspirations. Some are going into the military services. Some are going off to further their education beyond high school. Some are going off to the world of jobs. Some know or think they know what they want to do in the years to come. Some do not. Some are intrinsically motivated. Some are reaching for each ring and hoping for gold (or brass).

Looking at this group from up in the stands as they are perched at this jumping off point in their young lives, I reminisce fondly to my own graduation ceremony. It was many more years than I care to admit to myself. We were all seated on bleachers set up on stage in Cincinnati’s Music Hall. My graduation class was all boys. There were more than 220 of us. Music Hall has great acoustics. I once saw Peter, Paul and Mary in concert there on stage without microphones. It was great. I would probably not remember it at all except for this.

There were more than 220 of us and one of them discovered a loose board in the steps that made a crisp thwack sound when trod on properly as he returned to his seat in the second row of bleachers. Imagine. We were all boys about to be thrust into the world of men and war. It was 1967. (“Squirrel!”)

ThWACK! THwack! bumpff… THWACKub. … only 198 guys left to test their metal. Only one chance per player. The quiet first row never stood a chance but in all fairness, they did not get a chance to play.

The game was on and boredom no longer reigned within the class of baby boomers.

I missed Cheryl’s physical presence at Audrey’s ceremony. Later as I drove home we talked about it.

Carpe Diem, Audrey!

LRFZSUV

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What could it mean?

I followed this license plate to the place where I rode my bike yesterday. It went on but it stuck in my head because I followed it for several miles.

Last Real Fun Zanny Sport Utility Vehicle? It was on the back of a VW Tureg. So, maybe.

Perhaps it was only meant to have meaning to the driver. After all, she spent the extra money for the vanity plate.

I need more to do.

Carpe Diem.

Continuing Saga

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Today it is two weeks since Cheryl died. I still think of her in the present tense. I suppose to me she is. This morning as I talked to my sister on the phone, she is home now after the funeral service, I told her about my rediscovery of a couple tubs of reminiscence on the shelf in our storage area. The letter that was clearly visible, albeit, upside down in its placement in the tub attracted my attention.

After we finished chatting I took the tub down to look at it and its contents. Inside was a black and white picture of Cheryl in her wedding dress that had been submitted to the Miami Valley Press in 1970. It had been returned to Mr. & Mrs. Paul J. Weisgerber at our residence in Oxford, Ohio. It cost eleven cents to mail. It is a good memory.

I hope she never quits talking to me and directing my attention to things around me. (And smile pictures I did not know I have.)

Carpe Diem

Friday is for Cheryl

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Today’s daily mass has Cheryl as one of its intentions. So I came for her.

It is quiet. Peacefully quiet. I was okay when Fr. Pat read her name. Tears came though when she was not next to me at the “Our Father”. I could not hold her hand.

Today is Cheryl’s birthday. Happy Birthday Cheryl! Melissa just asked me if you are having Angel Food cake today. Are you? I made your favorite Betty Crocker pound cake mix. I think I got the icing right with Nancy’s help. I followed the Quick Icing recipe in the Dinner for Two Cookbook and added a little margarine. I had some for breakfast. It is pretty good.

I also planted your flowers yesterday. Remember? The fancy purple impatiens that you told me to get on Sunday? They look good by the door. It rained last night so they are not waiting for me to water them.

Cheryl, I find myself listening to Tracy Chapman”s “Fast Car” song a lot. I have no idea why except that it talks about two young people just trying to get through life and their excitement about their engagement with the world both past and looking into the future. For whatever reason it helps me to see your smile. Are you trying to tell me something? I will keep listening.

Happy Birthday to you!

Carpe Diem.

A Peace for Cheryl, Some Peace for Paul

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“There are always problems to face, but it makes a difference if our minds are calm. On the surface we may get upset, but it makes a difference if we are able to stay calm in the depths of our minds.”

His Holiness the great 14th Dalai Lama

Three days later and all the life celebrations are complete. I need some time to just be quiet. Some time for me only to think about Cheryl and maybe I can distract myself from my sadness. I do not know where I am going with that thought. A dismasted ship is a good metaphor. It is still upright. It has not lost its keel in the storm but its means of propulsion is missing.

I need some time to find propulsion. This feels very weird. My life is suddenly empty of a major piece of it. It is very hard to watch someone who you love die. I am not talking about being there at the actual moment of death. A very somber moment for sure but I am thinking about the long process that Cheryl went through.

Reading through my blog, journal entries, pictures and Cheryl’s postie notes to herself, the process took about six years. It was longer than that but that is the time line that I notice as I reread those.

Charlie Brown says it all, “AAUGH! and that gives me license to scream my displeasure at the whole thing and cry a little.

Carpe Diem.