Month: June 2024

Death and Other Thoughts

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I have spent a considerable amount of time thinking about death lately. I imagine that that is not unusual given the fact that the love of my life and my closest friend died just a few weeks ago.

I just finished a memoir by Sloane Crosley entitled “Grief is for People”. In it she discusses her relationship with a good friend, mentor and boss. She delves into her own feelings of grief and emotion after his death. He commits a suicide one day that no one including his partner had any hint was in the offing. She is angry and sad and writes about her life experiences with him. Her candor and vivid description of social life and office life is compelling. She had left the publisher to follow other interests and others said to her but he was just your ex-boss, why are you so upset? She examines that question from all sides. Regardless of the manner of death it is a well written discussion of emotion and friendship and loss.

I think I fell into reading it to examine my own grief for the loss of Cheryl. This is one of the few times that I have selected a book entirely based on the title and read it through. It was not what I was expecting it to be. I am always hunting for the manual that goes with certain places, stages, phases of life. I have found none, so, one might think I would quit looking for the repair manual that goes with this or that stage, phase or place in life but hope springs eternal in my mind. I will continue to search for meaningful words from someone who went down the road before me.

This book did cause me to think about Cheryl and analyze my feelings and my grief for her death. I have come to believe it is impossible to fathom death as a concept. I am not anxious for mine. Cheryl’s dementia was such that she seemed unaware of hers.

In a Louise Penny novel somewhere is the line, “Grief is love with no place to go.” This comment probably from Gamache, her main character, is succinct and directly to the point. I wrote that down in my journal a few years ago. It seems to me that I have no place to send my love for her and that is what makes it so difficult to accept.

Death is a normal and natural event. It can also be an abnormal and unnatural event. In either case it is death. Those of us left behind must find a new place for our love.

Carpe Diem.

A THOUGHT FOR TODAY: The ability of so many people to live comfortably with the idea of capital punishment is perhaps a clue to how so many Europeans were able to live with the idea of the Holocaust: Once you accept the notion that the state has the right to kill someone and the right to define what is a capital crime, aren’t you halfway there? -Roger Ebert, film critic (18 Jun 1942-2013)

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.