Caregiver diversions

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

Catfish Friday

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Many years ago when I was still working our company had installed a machine in a manufacturing company in Glasgow Kentucky. If it was necessary to visit this customer I would try to steer the meeting to Friday because it was Catfish Friday at Annie’s Kitchen in Glasgow. That memory came to me today when I ordered the catfish in the Drake cafeteria for lunch today.

I do not remember when I was last to Annie’s but it has been quite awhile. The fish at the cafeteria was pretty good but the fish at Annie’s place was exquisite.  I do not eat a lot of fish. I live in Ohio.

Lent is upon us and many churches, restaurants and volunteer firehouses have fish fries during lent. For many years that was our Friday(s) in Lent. Go to the fish fry and visit with friends and be Catholic like the old days when we were children for a time.

The pandemic pandemonium killed that all off for a time. And afterward Cheryl was less and less able to navigate the cafeteria and the commotion.

I miss that. Today I had fried catfish for lunch. (Okra and cornbread, too.)

Carpe Diem

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.)

A Letter

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

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

Carpe Diem

Random Thoughts for Today

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Today I am having one of those — Why is That? – kind of days. Last night or maybe the day before I was flipping through Facebook using up time. A friend had posted a picture of what he had made for breakfast. This morning I made a similar thing. His had bacon. Mine had ham. Why is that? I have bacon in the fridge. More importantly why am I occupying my time with Facebook? Should I not be on Truth Social or X getting excited about Elon and Donald care about? Why do I stick with Mark?

Down the rabbit hole I went. I have a lot of time to use up.

Observations

Extreme motion straight fit tapered leg – I noticed this written inside the waist band of the jeans I threw in the laundry this morning. I have read this before and took no notice. Today I thought, what does that mean? Is there an oxymoron in there somewhere? Are the legs straight or tapered? Is there another way to taper the legs other that in a straight line? Do they do that by hand or is there a sophisticated machine that does that? And what is extreme motion?

I am probably over thinking the banner written on the inside of the waist band. Only I see it when I put these jeans on and throw them into the laundry later. There is very little about my motion that is extreme. This pair of jeans has a little spandex or some other stretchy material mixed into the fabric which makes them comfortable to me.

I have split out two pairs of them in the seat. Perhaps I should look for “Extreme Motion – big butt rounded fit tapered leg” next time. Perhaps I will start looking now. It might take some time to find them.

Carpe Diem

Things People Said (or say)

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Lately I have been in a deep blue funk, a pile of heaping morosity, unsure of where to go from here. Vocabulary.com writes: When someone is morose, they seem to have a cloud of sadness hanging over them. This word is stronger than just sad — morose implies being extremely gloomy and depressed. We all can be morose at times, like after the death of a friend or family member. Whether you’re morose due to an event or just because you’re feeling blue, you should try skipping or whistling a little tune to perk things up. To find the other side of that mood, I do chores and concentrate on doing those efficiently and well. I am still arranging my little condo into a bachelor pad (for lack of a better description).

While doing chores I play Spotify on the TV or on a Bluetooth speaker I carry with me. A song list called “Classic Road Trip” is long, does not repeat until 700 songs later and sounds like old WSAI without all the Coke ads.

“I Ain’t Missing You at All“ by John Waite has words in it that captured my attention today. Usually the music is just background. This place is so quiet without Cheryl in it. Or maybe there is a hole that keeps me from being whole, nevertheless, he sang, “… And there’s a storm that’s raging through my frozen heart tonight. I hear your name in certain circles and it always makes me smile. I spend my time thinking about you and it’s almost driving me wild and that’s my heart that’s breaking…” I had been singing along but that got to me for a little bit. I had not noticed that the lyrics are generally sarcastic.

But I hear other’s words and relate them to things that I am feeling. I collect them on little scraps of paper. I found several while cleaning up a bit. Sometimes they are words to live by. Sometimes they are clever colorful descriptions from novels. Here are a few. It is up to you to discover the meaning.

To serve is to live. — Frances Hesselbein

Life is about living not existing – Arnold Schwarzenegger

You’ve got to be taught to hate and fear – from South Pacific

Marooned in a blizzard of lies. – social media rant

Oh, to be thirty years old again and have a prostate the size of a peanut. – wistful thinking by an older man.

It is not often that you realize the benefit of talking to close friends, with no pretense, with no excuse. – unknown

This last line I read somewhere. I wrote it in one of my many notebooks. It is very true. Simply being with friends and enjoying their conversation, the conversation past, “how is Cheryl?”, “how are you?”, which are two questions that I wish I were never asked, is generally enjoyable and relaxing. They know that I will volunteer information if I want to do it.

Carpe Diem!

A Sense of Cheryl

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Often when we went to see her neurologist and I talked to him about Cheryl seeing things or we saw the nurse practitioner and had similar conversations, he spoke of sensing a presence nearby. For the past few weeks that Cheryl has been away I have had that same sense of her nearby. It occurs mostly in the morning when I awaken. The sense of her is not always there but it is often there.

I admitted that to myself and others when we met for our support group meeting last night. The concept is hard to describe. There is something about being sensate to this world and being aware of our presence in it that implies to me an additional sense of soul. If there is a soul who is to say two souls cannot touch each other. They could become entangled and affect each other. Why not?

Yesterday I did not sense any of this presence of her. When I went to visit she was deeply asleep. No amount of talking or kissing of ears would awaken her. In the evening when I was home alone after my second visit I felt disconnected. Something was missing. I have no idea what but I felt or did not feel something. It was an emptiness and maybe a little anxiety because whatever it was, it was not there.

On this morning I felt her. I was certain she was awake and aware. When I went to visit, she looked at me and smiled. Maybe it is just fifty-three years of marriage. Maybe it is just a comfortable familiarity and an expectation that she will be with me in the morning. Perhaps it is just a pleasant dream of her that I am waking from. Perhaps it is what is referred to in the Star Wars movies as the force. I like to think there is an ethereal connection between us. We are eternally connected souls. Maybe a quantum connection exists.

Yesterday her end of the connection was off. Today it was not.

Carpe Diem. Carpe Nexum.

Words, Wordle and Anagrams

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An early morning wake-up activity for me is working my way through the Wordle, Quordle and Octordle, although I have little idea how to pronounce the last one. Being non-competitive does not mean that I do not enjoy intrinsic triumphs. I am a fan of crosswords, golf and trivia. All of these can have an externalized competitive setting but primarily these are the player versus the game itself. Nevertheless, words and word games are a fascination to me.

Occasionally working my way through these in the morning sparks other thoughts. An arbitrary word guess – because i am stuck and I have pecked in five letters to discover what my brain thinks about it – will turn into a valid word, often wrong, but valid. Campo was one of those. I am one of those who has several dictionaries and a couple bibles. I tend to look up bible citations and previously unknown words. “Campo” is a grassland plain in South America. (The Spanish and Portuguese got there first so they got to name things, I guess.)

In Octordle the object is to find all eight words in as few guesses as possible. My first two guesses are generally wasted while I hunt for vowels first. Once one of my vowel words showed all green but that was not my lowest score (low scores are best). Another internal fight I have with myself is to focus (or not) on a single word. Sometimes guesses are answers elsewhere. Those are just strategies. Today in one group all five letters where there after my third word entry (first guess). These were “r,a,t,e,h” sort of clumped in a corner grouping. EARTH or HEART are both good guesses here. I picked heart and I was incorrect. An anagram of both words is HATER which was the correct guess.

My brain whorled off into the ether. Heart versus hater. Light versus dark. Without a heart, one cannot live. Without hate not only can one live but life itself is brighter. An anagram is a simple rearrangement of the same letters. Perhaps we need more anagrams in our lives.

Carpe Diem or maybe Carpe Lucem!

Ice Cream

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This morning my thoughts turned to ice cream. Cheryl and I often went out for ice cream in the evening. In two smaller suburbs there was a Dairy Queen in one – she likes Oreo Blizzards – and Aglemessis Bros. which is a small local ice cream and confectionery. She likes black raspberry chocolate chip.

There is a very good story about the second store. many years ago when Cheryl was still working one of her coworkers would have what she referred to as “Grandma’s Camp”. She invited the grandchildren to stay with her for a week in the summer individually so that she could get to know each child without the distraction of the others and the bigger family around that would be there during big family gatherings. Cheryl decided that this was a good, bordering on great idea.

Audrey, Anna’s third child, stayed with us during this episode of our life adventure when she was about seven years. I am unsure exactly how old she was but it suffices to say she was a young child. She was a very early reader which became apparent when I took her with me to visit my mother at the independent living situation she was staying in to help organize her meds for another week. Audrey read some of the names of the medications and was asking me what various ones were for. Mom took a bunch of stuff.

Afterward I took her to Aglemessis Bros. for ice cream. This store has an old fashioned soda fountain style counter in it that you can sit at and watch the folks (soda jerks) dish up the ice cream and sodas. We sat there. There is a big board on the wall listing all of the flavors and other less important information about price. There is also a menu of sundaes and other goodies in addition to a display case for various chocolate delights and chunky chocolate all sold buy the pound. It is a chocoholic addict’s downfall. Audrey looked up at the board and said to me, ” Grampaw, they have chocolate chocolate chip!” I responded yes they do and you can probably get hot fudge on top if you want that also. I did not know at the time that my granddaughter was a chocolate fan like me. (It makes me smile inside when I recall this experience.)

I think she got chocolate sauce on her two scoops of double chocolate chip ice cream as did I and we sat with satisfaction as we ate and watched the activity behind the counter. I suppose that is why I particularly enjoyed bringing Cheryl to the Aglemessis store. It always reminds me of this story. I think tomorrow perhaps I will see if I can bring Cheryl some black raspberry chocolate chip ice cream from there.

From a precocious, chocolate loving, early reading, intelligent young girl to a beautiful young woman, when I think of Cheryl and I going to Aglemessis Bros. for ice cream, I think of Audrey and chocolate chocolate chip.

Carpe Diem.

Pizza Tuesday

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Sometimes You Can Be Surprised

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

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

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

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

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

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

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

Help from Many Others

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

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

Carpe Diem.