memories

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

A Budding Scientist

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One of the hidden benefits of my sister-in-law’s retirement from her lifelong private babysitting business is the fact that Zane her grandson often comes to help his mom spruce up my condo. Zane came yesterday and brought his rock collection. He is so proud of it.

I have many magnification devices and he had none, so, I gave him one of mine so that he could further explore his collection and expand his knowledge of his world. I also gave him a special Rubbermaid rock case to house his collection. He seemed satisfied with both

I snapped a few photos of the future STEM student. I am hoping that Zane will come to help his mom often. And I hope he will keep up his interest in geology.

It is unlikely that his interest in rocks will last throughout his lifetime but it might. Maybe many years from now when I am gone he will remember the good time he had yesterday examining his collect with the special magnifying glass Uncle Paul gave him.

He has such a great smile.

Carpe Diem.

After the Eclipse

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Scott figured out the exposure controls on his phone and took this picture. All I got was a blob of white light. The corona is still quite bright and phones have poor optics.

Leading up to and leading away from the time of totality, the light takes on an odd quality. In much the same fashion as just after a fierce rain storm, a thunderstorm, the light is oddly yellowish. It is dimmer of course but it is diminished and yellowish.

After the eclipse, young people’s conversation was about other things in their lives. My thoughts were about what I had just witnessed. I think I was a little awestruck and underneath the complete shadow, I felt a little sad. The sadness passed quickly as the awe took over.

After the eclipse shadow passed over us the newly blooming tulips where opening back up. The plants had closed their eyes for the night when the moon blocked out the sun.

Sunlight was dim but getting brighter. Little half moons appeared where the sunlight filtered through the bushes nearby.

Mostly though my thoughts went to Cheryl. Cheryl was fascinated with astrological phenomena. I was saddened that I could not enjoy the spectacle with her. I spent some time thinking of her reaction and discussing what we saw. We talked at length about how magnificent the corona appeared once the moon completely shut off the rays of the sun. She noted that she felt chilly when the shadow of the moon was directly overhead. (I am glad she did not need me to get her jacket from the car.) I told her that I noticed that the wind had kicked up somewhat . I supposed because the air was cooler. Many but not all of the birds stopped chattering to each other. I asked her if she had noticed the eerie sunset like quality to the horizon in all directions. This was unexpected for me.

Perhaps this is a way to mentally deal with grief, just simply talk to her. Later when I go to find the northern lights she can see them with me.

Carpe Diem.

Potato Mashers

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Opening the miscellaneous tools drawer in kitchen can send me down the rabbit hole just like Alice of rock song and wonder land. There are many things in this drawer. All of them have their own memories associated with them.

Before the move to our condo this drawer was much larger. We were less discriminating about which tools to keep and use. Following Cheryl’s ultra frugal idea of we might need it again, we kept many things. In her house as a child and even as we were dating in high school, her Mom kept throwaway plastic utensils. But we all have our little quirks. The picture above has two wire whisks in it because at some point in my life I decided I needed two. Rare has that occasion been but I still have two just in case that situation pops back up.

If I am going to mash potatoes I tend to reach for the handheld electric mixer in the next drawer over. It is way more efficient and quicker. Cheryl liked her mashed potatoes whipped up with a little milk and butter. There is the special two prong fork on the right side of the drawer (prongs are hidden) which is the only tool capable of determining if the potatoes have completed the boiling process. I learned so many cooking techniques from my wife. I can still hear her voice, “Get me the fork to check the potatoes.” Sometimes we would prepare a meal together but often she would shoe me out of the kitchen so that she could do things her way. We all have our ways.

Many nights cooking for myself I think her ways are better. And I was able to have a glass of wine and set the table. I think food tastes better if you do not have to do it yourself.

I did use the potato masher a couple times recently (in the last year) while following the meal preparation card that came with the Hello Fresh ingredients. Cheryl told me that she really does not care for sour cream in her mashed potatoes. “The garlic was okay but couldn’t we use milk and leave out the sour cream?”, she once asked. The potato masher was nestled back into the drawer never to come out again.

There are many stories associated with the implements shown in this drawer picture. The can opener came from a Magic Chef party held by a working friend of Cheryl who we met at Taste of Cincinnati. She was single and had leased an apartment in the old Shilito’s department store building downtown. It was a cute little apartment. I have repaired the handle several times. It has memories of better times associated with it.

As I was preparing to go visit Cheryl today, I pulled a ball cap off the shelf in my closet. Fifteen other hats fell on me. Those hats have a similar set of remembrance stories. Those are for another day.

Carpe Diem.

Cheers

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I have a lot of extra time. Cheryl is being cared for at Bridgeway Pointe and I hunt for ways to fill my day. I take walks on good weather days, this is one of those. The Spring weather is warming. It is not warming fast enough for me. Every time I walk by my bike to get into the car to visit Cheryl I check the tires just because. My plan for the summer is to ride that bike as many days as I can fit into my open schedule.

This morning I was uninterested in the news of the day. Donald is going to badmouth Joe for eight more months. It is impossible to describe how uninterested I am with all of that. The primary in Ohio is March 19th. After that I will no longer hear about what stinkers Frank and Bernie are and the guy with the construction company may get to drive down and fix the wall. None of those guys are telling me what they plan to do make the world a better place. They are telling me what the other guy is incapable of doing. Politics is sport. Trash talk is here.

Losing interest in network television I woke up Prime video and eventually old TV shows appeared inside of the CBS app. Cheers is an old favorite. The theme song came on and took me back to long ago. Making your way in the world today takes everything you’ve got. Taking a break from all your worries sure would help a lot. Wouldn’t you like to get away? ….Sometimes you wanna go where everybody knows your name and they’re always glad you came. You wanna be where you can see our troubles are all the same.

I sat and watched the very first episode (I think) where the bar burns down at 2 AM in the morning after partying hard at a wedding. Afterward I told Alexa to find the theme song and it politely played that for me before switching to a collection of other TV show themes. Nostalgia on some days is good I think.

Stephen Curry was on the morning news yesterday for a bit. He wrote another children’s book. He commented that his theme is to leave the world a better place. I think that is a good life philosophy. I used to have as a goal to have the money run out about the time I did, but that is a low bar.

Perhaps, “Choose happiness and leave the world a better place than you found it. And when you start something, finish it.” is my new motto, philosophy, theme.

Spring is coming!

Carpe Diem!

—

Cheers Lyrics: Songwriters: Gary Portnoy / Judy Hart
… Making your way in the world today
Takes everything you’ve got
Taking a break from all your worries
Sure would help a lot
Wouldn’t you like to get away?
… All those nights when you’ve got no lights
The check is in the mail
And your little angel
Hung the cat up by it’s tail
And your third fiance didn’t show
… Sometimes you wanna go
Where everybody knows your name
And they’re always glad you came
You wanna be where you can see (ah-ah)
Our troubles are all the same (ah-ah)
You wanna be where everybody knows your name
… Roll out of bed, Mr. Coffee’s dead
The morning’s looking bright (the morning’s looking bright)
And your shrink ran off to Europe
And didn’t even write
And your husband wants to be a girl
Be glad there’s one place in the world
… Where everybody knows your name
And they’re always glad you came
You wanna go where people know
People are all the same
You wanna go where everybody knows your name
… Where everybody knows your name (where everybody knows your name)
And they’re always glad you came
Where everybody knows your name (where everybody knows your name)
And they’re always glad you came
Where everybody knows your name (where everybody knows your name)
And they’re always glad you came
Where everybody knows your name (where everybody knows your name)

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

Florida Again

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After a few months, I find myself in Florida again without Cheryl. In June of 2023 when Cheryl and I came to the Florida panhandle with Anna and her family it was fun and it was exhausting. This time Cheryl is not with me. This time Joyce is often driving and I am able to watch the scenery. This time is different.

Last summer may have been our last trip together. This trip is not the first one without her that I was not going to work but this trip feels different. I cannot put my finger on what is different. Is it because Cheryl is not with me and it is the nation’s designated vacation spot? Surely that’s not it. I am visiting family with family. Is it because I am not worried or concerned about her care? As I was visiting with my sister in the previous October? I am still analyzing those thoughts.

Judy’s pool view

This trip started as an invitation to participate in an informational weekend about  the activities supported by the Southern Poverty Law Center  founded years ago by Julian Bond et al.

The weekend’s events culminated in jubilee commemoration of Bloody Sunday 59 years ago on the march from Selma to Montgomery Alabama.

Edmund Pettus Bridge

My impression of Selma is that it is remarkably poor. This impression is supported by empty and boarded up storefronts and the slow or non-existent recovery from the tornado that passed through a couple years ago. Whatever the vision is in the leadership of the great State of Alabama may be for the future it seems to have left the the small village of Selma behind. It is a pretty area. The few pictures I took of the river area show this fact and Selma has a grand boulevard in the center of it. There is a Walmart Super Center less than two miles from the town center. Big box stores tend to kill off the core of little towns. It seems to be happening here.

The bridge crossing happened on Sunday and after we walked across the bridge and completed wading through the crowd on the other side taking selfies and deciding what to do next and generally recrossing the bridge on the sidewalks back to the carnival atmosphere a block off the side of the boulevard, we found our bus back to Montgomery. That evening we went to a nice local restaurant for dinner. Fifty-nine years ago many of those bridge crossing folks spent the night in jail or the hospital somewhere. It is quite a contrast, then and now, but the poverty is still there.

The next day we were off to Port St. Joe, Florida to visit with our nephew Mark and his wife Leslie. Their little vacation home in Port St. Joe is set up perfectly no TV, no WIFI,  just conversation. Port St. Joe is a sleepy little town with the distinctive title of original capital city of the State of Florida. Leslie grew up there. Mark and his family took us to a raw bar. I later found out this is another name for a sea food restaurant.

As I conversed with Mark it struck me that he is very much like his father, my brother. In addition to resembling his father physically, his mannerisms, his focus, his jesters, I felt like I was talking to a younger version of my brother. I have not seen Mark since Mom’s funeral and we did not talk at length at the funeral.

Cheryl came flooding back into my mind. I looked around and in my head she told me that if she could have been there she would have sat near Leslie and the kids to talk and catch up. Family and conversation is very important to her. Sitting with Mark, my sister Joyce and his family, I realized how much I was missing Cheryl. She would have enjoyed this trip very much. And the additional aspect of lived history would have had her telling about this trip over many dinner conversations into the future.

The next day we continued on to visit with Mark’s mother, my sister-in-law, Judy. My brother left this Earth in May of 2020. Sadly, because of the COVID travel restrictions, Cheryl’s inability to travel easily and other factors, we were unable to attend services for my brother Bill. Judy showed Joyce and me a wonderful memory book put together by the funeral services company as well as the program for Bill’s celebration of life. I picked up the book and looking through it had to catch myself as I wanted to turn and show it to Cheryl. (I was missing Cheryl again.)

This was perfect; family, history, hiking, a beach nearby, Judy’s beautiful house at the end.

When I got home in the early evening my son Scott picked me up at the airport. As we rode along my only thought was to drive over and visit Cheryl. She was in bed already so I kissed her goodnight and returned home to eat something and consider various aspects of the trip, my relationship to my own family and enjoy sleeping in my own bed.

Carpe the road trip Diem.

Dear Cheryl,

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I am thinking about you this morning as I do every morning.

Earlier I listened to and old U2 song – With or Without You – And I realized that these words from this song have a very different meaning to me than the original lyricist meant. I cannot live with you physically. It is simply more than I can handle day to day. Between your Parkinson and the associated memory and dementia, it is overwhelming for me to take care for you by myself. This breaks my heart.

And yet, in my heart I cannot live without you constantly in my thoughts. Often in the morning when I hear some song or part of a song I think of a time when we were younger and this song was on the radio or the group was very popular and what we were doing in our lives. Some of those memories are vague with little flashes of pictures in my mind. The dream ends and I am in our home, alone, without you. I become sad again.

Songs and particular lines from songs often evoke an emotional (teary) response from my heart. Loving you and living without you is a very unsatisfactory feeling.

With you or without you – I miss you,

Paul

Dear Cheryl,

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Dear Cheryl,

You were sleeping today when I came to visit. Sleeping so very soundly that I did not want to disturb you. I kissed you on the cheek like I usually do to tease you awake. I know that you do not like me to kiss you on the ear. You did not even stir, not one bit.

I sat in the rocker for a little bit to watch you breathe.

After a few more minutes I left you to rest and came home. As I was driving home I thought to write this letter to you. I have been listening to a collection of songs from Spotify entitled – Songs to Sing in the Shower. Pulling into the garage LeAnn Rimes started singing, “You Can’t Fight the Moonlight”. This line – “There’s no escaping love; Once the gentle breeze; Weaves its spell upon your heart” – stuck with me.

I suddenly realized how much I missed seeing you today. The past couple days you were alert and we were able to sit and hold hands quietly. Yesterday you put your head on my shoulder and we sat that way for awhile. I enjoyed that quiet time with you.

I think that touching you is more important to me than I admit to myself.

Sleep well and rest. I will see you tomorrow.

I love you,

Paul

When I Visit Cheryl

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When I visit Cheryl which happens everyday I notice things. Some of these are after I return home. I am not so concerned about where I put my shoes after I take them off for example. When Cheryl was here with me I was constantly concerned with trip hazards lying about in our condo. Occasionally we would argue about things like doormats and trow rugs, all of which I had removed from the condo over time as her ability to move and walk and balance became worse.

I notice how the staff interacts with the residents. They are generally kind and attentive. They are, I imagine, acutely aware of their own staffing levels.

I notice how the residents interact with the staff. Helen, another resident in the Harbor with Cheryl, is awake and alert and talkative today. Last night the Super Bowl went into overtime. It was not won until just before 11 PM, so, I imagine that several maybe most of the staff sat up and watched it until the end like I did. The difference being that I did not have to get up at 5 AM to make the 6:30 AM staff meeting. Some of the staff have that combination of Monday morning sleepy grumpy going on. I get that. I used to be a service/engineering manager. Mondays were often unnecessarily busy while we picked up all the stuff that fell on the floor over the weekend.

I notice the level of staffing. It is less so on the weekends as one might expect it to be. If there is one single area that I could suggest could be improved it would be weekend staffing. The world in general revolves around folks not working weekends without some sort of extra incentive which is often money. Rewarding altruism and empathetic caring for folks who cannot care for themselves is hard work for the administration and work life balance is strained when the work and life are similar. Conjuring useful rewards for weekend work like appealing to their sense of altruism is probably tough.

I notice the changes when the shift ends. The next group comes in. It is generally a smooth transition.

I hear the little discussions between the staff – what’s important to them.

I also find that if I am not the full time care partner I was when Cheryl was home with me I am able to have opinions about how others do the same task. I wonder about how I might do it differently. I keep those thoughts to myself. Juggling the needs of a dozen people at different stages of Alzheimer’s, Lewy body, Parkinson’s and other forms of dementia is more complicated than I had to deal with at home. My personal dilemma was remaining kind and thoughtful with lack of sleep but a lot of love. Love is sometimes hard to find if you are Mr. Lack-of-sleep-cranky-pants.

All of this wandered though my thoughts today as I visited with Cheryl and sat with her while she dozed in her chair. She was slightly awake but sitting with her eyes closed. She was uninterested in having company. I just held her hand for a bit and it seemed like she relaxed and fell into a nap. I miss her daily company.

Carpe Diem. ( Carpe Somnum when it is time.)