expectations

What a Days I Have Been In.

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Yesterday we tripped to a couple wineries to enjoy a bottle and some snacks. Today we saw waterfalls.

Don’t go chasing waterfalls, please stick to the rivers and the lakes that you are used to. I know that you want to have it your way or nothing at all but you are moving too fast. – TLC

This song often pops up in my head. It has a good cadence for bike riding and as a result it is on my playlist from Spotify. It has a metaphorical meaning that I interpret as look around and understand where you are before you dash off looking for something better. Another phrase is – the grass is always greener on the other side of the fence. Maybe it is maybe it is not. I suppose that we always want the thing that we do not have. We want what the other guy has rather than merely celebrating with him that he has it and enjoying what we have.

When I would take mom to dinner at a restaurant which has not happened for some time, she would ask me what I was having. This a different form of the same thing. Why would Mom want to be interested in what I was about to order from the menu if she did not believe in some way that it was going to be better than what she was intending to select for herself? Is there something I am missing here? Once I protested telling her what I was thinking about having and made that argument to her. She responded with – I might want to change and get what you are getting. That is a reasonable response.(After we ordered and the food came, often she would take her fork and get a bite of my whatever it was. I loved Mom but that always annoyed me.)

We all have had experiences like this. We all have a fear of missing out (FOMO). We are not missing out on anything. We may be unsure of our decision but that specificity does not imply that the particular decision that we have made for ourselves is the wrong one. That cannot be known or understood until it has been executed. The decision may morph into a learning experience. That is a good thing.

These days as I wonder what purpose this portion of my life is for, thinking about and pondering big changes to my life, I look for the waterfalls.

In the background while I am doing the day-to-day activities of life, various chores, duties near to and necessary for the little part time job I have with a local community college, I think about making larger changes in my situation. Cheryl was all of my day before she moved to memory care. She was a huge part of my day when she moved and had full time care not from me. Now that she is gone there is a vast empty time.

I have thought about continuing with volunteer work or activities of some sort at the memory care facility where she had been. I just do not think I can do that. The memories are too raw. My heart sinks when I think about it. I feel that I am letting them (the patients there) down. I do not know where that feeling comes from within me.

For now, I have filled it partially with bike trips. These trips of 12 or 15 miles at a stretch let me get much needed exercise. They provide solace and distraction. It is easier to imagine the times when she was not sick.

This week I am filling my time with visiting with my sister. We have a commonality in that she became a widow a few months before I became a widower. We support each other in that respect. She was not expecting to lose her husband and I was not expecting to lose Cheryl. Even though it was right in front of me I refused to believe Cheryl would be gone. I have come to grips with that now. (I still do not like it but there it is.) I notice myself talking about Cheryl and trips we made. It is easier as time continues.

Where do I go from here? Should I look for a new waterfall? The pool below the fall is close to the ground but still agitated. Often the stream below is swift moving. When the water joins the river it is moving slower and calmer.

Carpe Diem.

The Books Showed Up

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Generally I like mystery stories of some sort. I am a big fan of and have read all of John Sanford’s (Cloud’s) Lucas Davenport and Virgil (that fucking) Flowers series. They are entertaining but not mysteries. The last couple with Letty are mechanical in structure. John may be losing me as a fan. As I look at the library website and read other things, I make note of, or if I have my communication device (phone) with me and can look for whatever book was mentioned, I put the volume on hold at the library if they own it or are buying it.

That last sentence looks cumbersome and may need restructuring. Sometimes the book takes weeks to appear at my local library branch. occasionally several will arrive simultaneously. This simultaneous arrival of several books happened on Friday, I responded on Saturday and another appeared. Alas, I have six books to read or at least peruse before I return them. These six are in addition to the several e-books that I have borrowed and downloaded to my Kindle. I do not read everything that I borrow or download. I give the author a chance, perhaps, ten or twenty pages, before I decide too bad a bummer.

I have a lot of nothing to do lately. It consumes my whole day, however, it is interesting and amusing to me that I can spend all of this time with nothing to do doing nothing and not lose interest. How I tripped over Anne Lamott is a true mystery and I love mysteries. Did I say that? Already? Was Cheryl talking to me? Her book, “Small Victories [Spotting improbable moments of grace]” is not one I would have selected while shopping at the library, nevertheless, it showed up on the holds shelf for me. I did not steal someone else’s hold (I checked) but I wonder what was going through my head when I put it on hold. I put the hold on the LARGE PRINT addition which is often available when all other versions are out which means I felt an urgency to finding a copy. This is truly mysterious.

Her book is a collection of essays about life, faith and graciousness in adversity. We all have adversity fall on us at some time on life’s journey. Cheryl’s death hit me pretty hard even though she died mentally a couple of years prior to her actual death. Anne’s book was on top when I set these six down near where I often sit in the evening to read or find some old movie (or new one) on Prime, Peacock or one of the other streaming services for which I have subscriptions. (Movies get a mere five minutes to gain my interest. I forgot how good JAWS is and the bad science of compressed air bottles.)

Anne entitled this story, simply, “Ashes” and since Cheryl was cremated the story title attracted my interest as the one to read first. I started her anthology in the middle.

Ash Wednesday came early this year. It was supposed to be about preparation, about consecration, about moving toward Easter; toward resurrection and renewal. It offers us a chance to break through the distractions that keep us from living the basic Easter message of love, of living in wonder rather than doubt. For some people, it is about fasting, to symbolize both solidarity with the hungry and the hunger for God. (I, on the other hand, am not heavily into fasting: the thought of missing even a single meal sends me running in search of Ben & Jerry’s Mint Oreo.)
There are many ways to honor the day, but as far as I know, there is nothing in Scripture or tradition setting it aside as the day on which to attack one’s child and then to flagellate oneself while the child climbs a tree and shouts down that he can’t decide: whether to hang himself or jump, even after it is pointed out nicely that he is only five feet from the ground.
But I guess every family celebrates in its own way.
Let me start over. You see, I tried at breakfast to get Sam interested in Ash Wednesday. I made him cocoa and gave a rousing talk on what it all means. We daub our foreheads with ashes, I explained, because they remind us of how much we miss and celebrate those who have already died. The ashes remind us of the finality of death. As the theologian said, death is God’s no to all human presumption. We are sometimes like the characters in Waiting for Godot, where the only visible redemption is the eventual appearance in Act Two of four or five new leaves on the pitiful tree. On such a stage, how can we cooperate with grace?
How can we open ourselves up to it? How can we make room for anything new? How can we till the field? And so people also mark themselves with ashes to show that they trust in the alchemy God can work with those ashes — jogging us awake, moving us toward greater attention and openness and love.
Sam listened very politely to my little talk. Then, when he thought I wasn’t looking, he turned on the TV. I made him turn it off. I explained that in honor of Ash Wednesday we were not watching cartoons that morning. I told him he could draw if he wanted, or play with Legos. I got myself a cup of coffee and started looking at a book of photographs. One in particular caught my eye immediately. It was of a large Mennonite family, shot in black-and-white: a husband and wife and their fifteen children gathered around a highly polished oval table, their faces clearly, eerily reflected in the burnished wood. They looked surreal and serious; you saw in those long, grave faces echoes of the Last Supper. I wanted to show the photograph to Sam. But abruptly, hideously, Alvin and the Chipmunks were singing “Achy Breaky Heart” in their nasal demon-field way — on the TV that Sam had turned on again.
And I just lost my mind. I thought I might begin smashing things. Including Sam. I shouted at the top of my lungs, and I used the word “fucking,” as in “goddamn fucking TV that we’re getting rid of,” and I grabbed him by his pipe-cleaner arm and jerked him in the direction of his room, where he spent the next ten minutes crying bitter tears.
It’s so awful, attacking your child. It is the worst thing I know, to shout loudly at this fifty-pound being with his huge trusting brown eyes. It’s like bitch-slapping E.T.
I did what all good parents do: calmed down enough to go apologize and beg for his forgiveness, while simultaneously expressing a deep concern about his disappointing character. He said I was the meanest person on earth next to Darth Vader. We talked, and then he went back to his drawing. I chastised myself silently while washing breakfast dishes, but then it was time for school and I couldn’t find him anywhere. I looked everywhere in the house, in closets, under beds, and finally I heard him shouting from the branches of our tree.
I coaxed him down, dropped him off at school, and felt terrible all day. Everywhere I went I’d see businessmen and businesswomen marching purposefully by with holy ashes on their foreheads. I couldn’t go to church until that night to get my own little ash tilak, the reminder that I was forgiven. I thought about taking Sam out of school so that I could apologize some more. But I knew just enough to keep my mitts off him. Now, at seven years old, he is separating from me like mad and has made it clear that I need to give him a little bit more room. I’m not even allowed to tell him I love him these days. He is quite firm on this. “You tell me you love me all the time,” he explained ‘recently, “and I don’t want you to anymore.”
“At all?” I said.
“I just want you to tell me that you like me.”
I said I would really try. That night, when I was tucking him in, I said, “Good night, honey. I really like you a lot.”
There was silence in the dark. Then he said, “I like you, too, Mom.”
So I didn’t take him out of school. I went for several walks, and I thought about ashes. I was sad that I am an awful person, that am the world’s meanest mother. I got sadder. And I got to thinking about the ashes of the dead.
Twice I have held the ashes of people I adored — my dad’s, my friend Pammy’s, Nearly twenty years ago I poured my father’s into the water near Angel Island, late at night, but I was twenty-five years old and
very drunk at the time and so my grief was anesthetized. When I opened the box of his ashes, I thought they would be nice and soft and, well, ashy, like the ones with which we anoint our foreheads on Ash Wednesday. But human ashes are the grittiest of elements, like not very good landscaping pebbles. As if they’re made of bones or something.
I tossed:a handful of Pammy’s into the water way out past the Golden Gate Bridge during the day, with her husband and family, when I had been sober several years. And this time I was able to see, because it was daytime and I was sober, the deeply contradictory nature of ashes — that they are both so heavy and so light. They’re impossible to let go of entirely. They stick to things, to your fingers, your sweater. I
licked my friend’s ashes off my hand, to taste them, to taste her, to taste what was left after all that was clean and alive had been consumed, burned away. They tasted metallic, and they blew every which way. We tried to strew them off the side of the boat romantically, with seals barking from the rocks onshore, under a true-blue sky, but they would not cooperate. They rarely will. It’s frustrating if you are hoping to have a happy ending, or at least a little closure, a movie moment when you toss them into the air and they flutter and disperse. They don’t. They cling, they haunt. They get in your hair, in your eyes, in your clothes.
By the time I reached into the box of Pammy’s ashes, I had had Sam, so I was able to tolerate a bit more mystery and lack of order. That’s one of the gifts kids give you, because after you have a child, things come out much less orderly and rational than they did before. It’s so utterly bizarre, to stare into the face of one of these perfect beings and understand that you (or someone a lot like you) grew them after a sweaty little bout of sex. And then, weighing in at the approximate poundage of a medium honeydew melon, they proceed to wedge open your heart. (Also, they help you see that you are as mad as a hatter, capable of violence just because Alvin and the Chipmunks are singing when you are trying to have a nice spiritual moment thinking about ashes.) By the time I held Pammy’s ashes in my hand, I almost liked that they grounded me in all the sadness and mysteriousness; I could find comfort in that. There’s a kind of sweetness and attention that you can finally pay to the tiniest grains of life after you’ve run your hands through the ashes of; someone you loved. Pammy’s ashes clung to us. And so I licked them off my fingers. She was ‘the most robust and luscious person I have ever known.
Sam went home after school with a friend, so I saw him for only a few minutes later, before he went off to dinner with his Big Brother Brian, as he does every Wednesday. I went to my church. The best part of the service was that we sang old hymns a cappella. There were only seven besides me, mostly women, some black, some white, mostly well over fifty, scarves in their hair, lipstick, faces like pansies and cats. One of the older women was in a bad mood. I
found this very scary, as if I were a flight attendant with one distressed passenger who wouldn’t let me help. I tried to noodge her into a better mood with flattery and a barrage of questions about her job, garden, and dog, but she was having none of it.
This was discouraging at first, until I remembered another woman at our church, very old, from the South, black, who dressed in ersatz Coco Chanel outfits, polyester sweater sets, Dacron pillbox hats. They must have come from Mervyn’s and Montgomery Ward, because she didn’t have any money. She was always cheerful — until she turned eighty and started going blind. She had a great deal of religious faith, and everyone assumed that she would adjust and find meaning in her loss — meaning and then acceptance and then joy — and we all wanted this because, let’s face it, it’s so inspiring and such a relief when people find a way to bear the unbearable, when you can organize things so that a small miracle appears to have taken place and that love has once again turned out to be bigger than fear and death and blindness. But this woman would have none of it. She went into a deep depression and eventually left the church. The elders took communion to her in the afternoon on the first Sunday of the month — homemade bread and grape juice for the sacrament, and some bread to toast later but she wouldn’t be part of our community anymore. It must have been too annoying to have everyone trying to manipulate her into being a better sport than she was capable of being. I always thought that was heroic of her: it speaks of such integrity to refuse to pretend that you’re doing well just to help other people deal with the fact that sometimes we face an impossible loss.
Still, on Ash Wednesday I sang, of faith and love, of repentance. We ripped cloth rags in half to symbolize our repentance, our willingness to tear up the old pattern and await the new; we dipped our own fingers in ash and daubed it on our foreheads. I. prayed for the stamina to bear mystery and stillness. I prayed for Sam to be able to trust me and for me to be able to trust me again, too.
When I got home, Sam was already asleep. Brian had put him to bed. I wanted to wake him up and tell him that it was okay that he wouldn’t be who I tried to get him to be, that it was okay that he didn’t cooperate with me all the time — that ashes don’t, old people don’t, so why should little boys? But I let him alone. He was in my bed when I woke up the next morning, over to the left, flat and still as a shaft of light. I watched him sleep. His mouth was open. Just the last few weeks, he had grown two huge front teeth, big and white as Chiclets. He was snoring loudly for such a small boy.
I thought again about that photo of the Mennonites. In the faces of those fifteen children, reflected on their dining room table, you could see the fragile ferocity of their bond: it looked like a big wind could come and blow away this field of people on the shiny polished table. And the light shining around them where they stood was so evanescent you felt that if the reflections were to go, the children would be gone, too.
More than anything else on earth, I do not want Sam ever to blow away, but you know what? He will. His ashes will stick to the fingers of someone who loves him. Maybe his ashes will blow that person into a place where things do not come out right, where things cannot be boxed up or spackled back together, but where somehow that person can see, with whatever joy can be mustered, the four or five new leaves on the formerly barren tree.
“Mom?” he called out suddenly in ‘his sleep.
“Yes,” I whispered, “here I am,” and he slung his arm toward the sound of my voice, out across my shoulders.

Tomorrow I hope the weather will let me ride my bike for a little exercise, but if not, I can read the rest of Anne’s stories.

Carpe Diem!

The Way Things Are (or were)

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Cheryl taught me that you do not have to accept the way things are if you think that the current situation is not acceptable or not perfect for your needs. Acceptance of imperfection was against her nature. It sounds odd even to my ear but I thought about this as I was retrieving the kitchen tablecloth from the dryer to fold it. A few years ago we were shopping for a round tablecloth in Walmart one evening. She found one that she liked but it was considerably larger than necessary to cover the table. I pointed that out to her but she liked the pattern, so, we purchased it. Her solution was to trim it and hem the new edge. She did this to two tablecloths. One to put on the table while the other was being laundered.

This tablecloth story is just one really small example. The tablecloths were not so large that they were unusable as is but it was a point in our life when we were very conscious of trip hazards and grab bars. Extra draping material from the tablecloth seemed to be a thing to avoid if possible.

Support group – her diagnosis of Parkinson and later discovery of others within our parish community were faced with the same malady inspired her to start up a support group within the parish. I wrote the following paragraphs as a part of thank you notes to many people who memorialized her by sending money to the U.C. Foundation.

She set out early on to help others cope and live their fullest life with Parkinson disease. She started a support group at Nativity Church, our parish community, and when COVID came along and stopped everything she moved it to Parkinson Community Fitness in Blue Ash were it grew to include many others who were not Nativity parishioners. Her goal was to disseminate information, provide social interaction and to help with the day to day activities of life with Parkinson. She wanted this to help both the person with Parkinson (PWP) and the care partners.

Her support group which I and a couple other helpers continue, is somewhat unique in this respect. Often support groups are for one or the other but by encouraging both to come she encouraged up front discussion about what both the care partner and the PWP were anxious and concerned about. Those concerns are often very different. Her group provided a safe place for us to talk over those issues.

Exercise – In her own body she did not accept the progression of the disease as a forgone conclusion. She knew that exercise was helpful and important for her to stave off the effects of the disease. Cheryl was not athletic at all during her life time. She played no sports. What she did enjoy is walking and hiking but she accepted the fact that she needed to exercise consistently. We had belonged to the YMCA and the JCC for a long time before her symptoms appeared. In her deep water aerobics classes at the JCC she struggled with moving down the pool as her left side motion and control manifested the influence of early symptoms of her Parkinson.

She did not give in to the onslaught of her disease. We walked more and she worked with a trainer at the YMCA who admitted that she was unfamiliar with PD but she was willing to learn and work with Cheryl. Cheryl for her part had a group of exercises provided by a physical therapist and between the two of them they developed a series of routines that Cheryl would do every time we came to the Y. I just peddled a stationary bike elsewhere in the gym and observed.

She was a consistent exerciser until the last year of her life when the disease took over her cognition and memory. I fought that by getting the doctor to recommend physical therapy. She was unable to keep up with the exercise regimen without some close in support.

Research – she participated in a research study that tracked the progression of the disease and because she told me she wanted to do it, when she neared the end of her physical life, I signed the paperwork for her to donate her brain to the scientists at U. C. studying the causes and searching for a cure for Parkinson. Cheryl’s dementia had completely taken over her brain a few weeks before death. She asserted her will until the end but eventually succumbed.

I was reminded of all of this this morning while folding that tablecloth. It is amazing, her mom’s word, where my thoughts go while doing everyday activities such as laundry.

Never settle for almost the right solution.

Carpe Diem.

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)

Dear Cheryl

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Dear Cheryl,

It has been exactly four weeks since I have written to you. The days blend together, so, ever since you have moved to Bridgeway Pointe, I have kept a journal of how you appear to me, your moods, your alertness, my thoughts and other things. As I look through this log of information about the past few weeks I noted many things that have happened during the last four weeks.

A couple days after I wrote the last letter, I was enjoying the sunset with some of our neighbors and was a little more inebriated than I thought at the time and fell while getting up from my chair. I admit to myself that I was feeling a little sad when I came home from visiting you that day. I do not know why. You appeared frail and I noted that I cried when I first saw you that day. I suppose that was still with me when I returned home to make myself dinner. For whatever reason I give myself, I found the bottle of vodka that I had in the freezer and added a little sprite to it in a glass. ( I was out of tonic. ) It was sweeter than I like but I imagined watching the sun go down while I was waiting for the casserole I had put together cook in the oven. Two of our neighbors showed up to join me and all was well until I fell on my face. I must have knocked myself out because I have little memory of the incident until I was looking at a fireman who strongly suggested that I go to the hospital. I had no interest in doing that but I gave in and went anyway. Now I have this collar to wear that you see me in when I come to visit. And now I know what an annoying experience that must have been for you when you were taken to the hospital over the past several years. Although I was not hallucinating at night, sleeping was like trying to get forty winks in a busy elevator.

I went to the hospital on Thursday evening. I came back home on Sunday afternoon. Sleeping on Sunday night was wonderful. I made it to six hours before my bladder took me to the bathroom. All of our kids came to visit with me on Friday. Scott gave me a ride home on Sunday. Anna and David and Scott visited you and me that whole weekend. We have wonderful children.

On Monday I was a little stiff and wearing an old set of eyeglasses. I could see okay but not comfortable driving with my new neck apparel. Your sister, Nancy, offered to drive me over to Bridgeway Pointe so that is what happened on Monday, bloody Monday. About every other day of that week you were sleeping when I came and Nancy gave me a ride to visit another day and we rode you around the building that day. You were more alert and Nancy seemed pleased to do it.

On Monday March 25th I went to see Lauren, our PCP folk. Her office called me the Monday after I got home from the hospital to check on me and ask if I wanted to come in for a visit. I admitted to her that I felt a little sad that day and asked her if there was a grief counselor or psychologist I could talk to about me. I am not sure what I want to get out of such an encounter. Sometimes when I leave you to come home I feel an overwhelming sadness. I did that Thursday a few weeks ago. I thought to have several drinks. That was a normal, I suppose, and stupid reaction. I will have to be aware of that when it creeps up on me. Perhaps I should just call Joyce or your sister Nancy and talk about what I am feeling. I am unsure about how talking to a complete stranger or a group of complete strangers will help. Joyce asked me if it affected my manliness when I felt sad and teary-eyed with others around. I replied that it did not bother me so much but I wished that it would not happen. She pointed out to me that you are a very important person in my life and although you have not passed on from this Earth, in many ways you have passed on from me and that is always going to be hard on me. (I think it is not so hard on you because you seem off somewhere else most days when I come to visit.)

Anna had a party for Virginia’s Birthday. She is sweet sixteen now. Do you remember what a cute two year old she was? I spent David’s birthday in the hospital. I wished him a happy birthday when he came to visit me.

Britney called me on the phone one evening as I was driving home from kissing you good night. She said you had slid out of your wheelchair as they were getting you into bed for the evening. Are you having a harder time sitting up in that chair? Or were you in a hurry to get into bed? I remember when you were home with me sometimes you went to bed early and were in a hurry to get there.

On Easter Sunday when I came to visit, You asked me where I was going today. I told you that I was going to Anna’s house for the afternoon for a cookout. I noted this in my journal because of two things; your voice was very plain and understandable when you asked, it seemed to me to be a very lucid thought. After you asked me that, you said; good, I am going to stay here today. (I noted a small patch of lucidity.)

I took the seat cushion from your wheelchair home to clean it on April Fools Day. It needed it. I traded the other cushion from the kitchen chairs with you. The last time I washed it I had to chase the washer around the utility room. It was out of balance after the cushion had sucked up ten pounds of water from the wash cycle. This time I thought that I would just soak it in the utility sink. I put about six inches of hot water in it and added a little bleach to the water. (It looked like you may have leaked a little onto it one day.) After soaking overnight it had these vivid purplish stains on it. There must be some metal in whatever it is stuffed with. Bleach reacts with a couple different metals to produce a purplish stain. Its clean but it looks bad.

This situation we are in, as I watch you become more and more frail. And as I watch you lose more and more weight. This whole process makes me worry about losing the picture in my head of your lovely smile. I have made a new project for myself of making a collage of you and your smile. So far it is pretty good, I think. I printed it out for you here so you can see for yourself and judge. I do not have a copy of every picture. There are many. On the next page you can see what it looks like so far. I am still searching for one or two other pictures that I know I have but with the cleanup I have been doing around our house I have placed them in a safe place where they will not be lost. I have not found that place back yet.

I have learned many things over the past four weeks. Do not drink vodka if I am sad. Beer will make me get up for a trip to the toilet more often and the alcohol is more dilute.

Avoid overnight stays in a hospital.

I am not interested in puzzles. I tried to become interested after one of the trips to Bridgeway Pointe with your sister. (new hobby and all that…) I have had it partially assembled on the dining room table for about two and a half weeks. I am told that real puzzle workers do not leave them dissembled out for that long. All I can say is that I am not that interested.

I am interested in writing more. I have a loose collection of stories that I call a hitchhiker’s guide to parkinson. That is much like a puzzle to me. Fitting it together as a story and memoir of our last fifteen years or so is a goal. Whether I achieve it or not is up to me.

A total eclipse of the sun is a magnificent sight. I shall remember it forever.

My journal is becoming more than a log of you and how you are. Two days ago I felt that my sourdough starter was far enough along to use it to make a loaf. Over that day I came to visit with you three times while I was waiting for it to proof and develop. At the end of the day after dinner and I got the loaf out of the oven, I came back over to Bridgeway Pointe to visit you. This is what I wrote that night when I returned home: I use this book to write about Cheryl and how she is doing but tonight I was disappointed that she was already in bed. I suppose I could sit with her in the darkened room but I sat on the edge of the bed for a short time and held her hand. I kissed her good night and went home disappointed. — I wanted to sit with her like we used to do.

(In the evening, some nights I really miss just sitting with you – maybe we watch TV, maybe we just talk, maybe you beat me at Scrabble, maybe I read a book and you are sewing on some project.)

Cheryl that is all I have for now. I have tried to catch you up on all the doings that happened since last I wrote. Know always that I love you.

Paul

Carpe Diem

Dear Cheryl

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Dear Cheryl,

You know of course that you are the love of my life, the place where I am home.  I do not say this to you often enough. I am writing it here so that you can read it often if you want.

This morning when I came to you to be home and see how you were doing, Jennifer told me that you had no interest in getting up so after the bathroom she helped you back to bed. This is where you were when I came. I kissed you and you ignored me.  You were deeply sleeping. I sat and watched you breathe for a few minutes, hoping you would stir. You did not, so, I kissed you again and told you that I would return later.

Here I am again. It is almost three pm and you are still lights out. I talked to Mike in the hallway outside of the Harbor. He told me that you were still sleeping and he had taken your vital signs. He made a little joke about this being one of those days when you are not participating. He is such a gentle nurse.

As I was ending my conversation with him, I met Rosie Doud. You know, Bill Doud’s sister? She is staying at Bridgeway Pointe.

Even though Mike said you were sleeping, I came to watch you breathe. Maybe you will awaken later when Linda and Regan come. Maybe not. Obviously you need to sleep today. I am glad you did not need to doze yesterday afternoon. We held hands and you told me about something but I did not understand all of your words.

Sleep some more and I will check on you after supper.

I love you.

Paul

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.

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.

Not Too Negative About It

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As we move down the road of Cheryl in a special place that can take care of her all day long every day, it gets easier for me to leave her. I am assured that she is getting the best care for her at this time.

The past few weeks when she was still home and it was all me, I started feeling anxious and upset with her lack of motivation to help with her own well being. I knew that her disease was getting in the way more. I was frustrated with her lack of cooperation with me with caring for her.

I was perhaps stepping on the last little bit of control that she had over events in our life. My whole waking day was consumed with her. I did not mind that but looking back, from her perspective, I was overwhelming, helicoptery and just plan annoying. There is a difference between accepting help from someone and having unwanted help thrust upon you. I was drifting into the thrusting arena.

This current situation is different. I can step back and let the aides do it – whatever it may be.

I am a husband again. Making sure has has all she needs to do for herself – whatever it may be.

Carpe (deep sigh) Diem.

We Do Not Know

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I started a single line entry in my note book a few days ago with this single line – A thousand thoughts and prayers amount to less than a single action. It was a thought for the day from somewhere. I get a lot of newsletters and other useless email. This was included in one of them.

People say or write it to each other all the time, ” My thoughts and prayers are with you.” For those who are unable to write or say actual words there is the text-message hieroglyphic picture of praying hands which Anglos interpret as prayer but Hindus probably interpret differently. I do it too. Is it cynical to think of it as a shallow and ineffective response to a request for help of some sort? Caring and caregiving are two very different concepts.

The kitchen garbage can is full. VS. Please, John, take the garbage out. Most will think this a bad example but I do not. The first is a description of a condition. The second is a specific request to a specific person.

Most of us are not specific about any need that we may have for help. It is unusual to make a specific request. It is very typical to talk about our own situation or describe some condition that we are in. Few will volunteer to help without a specific request.

Grace and peace be to all of you who help Cheryl and I without a specific request from us. We love you dearly and thank you for your gracious help.

We do not know the other person’s situation. We are not walking in their shoes. We are not taking their path through life. Let us all listen closely and ask, “How can I help?”

Carpe Diem.