faithfulness

Sunday Awake Day

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My cheesy grin

Today is Sunday. When I was here earlier Cheryl was dozing. She had taken her meds earlier and ate a little breakfast. Often when I come over on Sunday afternoon she is alert and  active and talking to someone else who is invisible to me. This day is no exception.

She let me sit with her and hold her hands for a few minutes. Now she has rediscovered a knitted fidget that has beads, a pocket, a loop and buttons. Cheryl discovered this shortly after she moved to Bridgeway Pointe and it seems to keep her interest for long periods. She is struggling with the loop to hook it over the bead and button.

The loop is the most fascinating thing. She loves to loop it around her fingers.

I take every opportunity to hold her hand.

Carpe hand holding Diem.

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

Semper Fi; Adapt To Change

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Our son was a Marine. Their motto Semper Fidelis, Always Faithful, is a sentiment I apply to our union. We made a similar vow to each other fifty years ago. Each day is a new day to renew our pledge.

Some new thing comes up all the time. I have to say this up front so you can understand the rest. Cheryl has Parkinson’s Disease (PD) and generally it sucks. Lately, it seems, I may have discovered a silver lining to this malady. Because after a dozen years or so down the road, we are more sedentary. It is unintentional this sedentariness but it is good preparation for the Covid-19 stillness that is imposed upon us. In the early days of the pandemonium the story seemed to mirror much of the apocalypse fiction written by Steven King – The Stand; Micheal Crichton – The Andromeda Strain; and others.

Apocalyptic fiction, of which I have read much, centers on two themes. Either there is some sort of catastrophic war/explosive event or there is a viral/bug/bacterial disease. Both somehow wipe out 96.4% of the global population. 0.6% wind up in a terrible struggle for dominion with the other 3%. I recommend reading none of this fiction while hanging out and waiting for the Covid-19 pandemic crisis (or non-crisis) to complete God’s plan. I did not follow my own advice and finished Justin Cronin’s trilogy: The Passage, The Twelve, The City of Mirrors. But I have digressed.

This pandemic has taught Cheryl and me much about ourselves. We are able to learn new skills such as ordering food online and picking it up a week later. This of course is a memory test to discover if us older folks are with it. This experience is not as satisfactory as ordering from Amazon or Walmart online and having the items delivered directly to your door. The memory test is still present, however, and it is tricky to not order the same item from three different suppliers because you have lost track of who is sending you what when. Some days are like Christmas, your birthday and St. Nicholas Day. Other days are like meatless Fridays.

For better or worse we have learned how to do video doctor visits, video fitness center visits, video physical therapy exercise visits, video Easter gatherings, video faculty meetings, video classes, video masses, video funerals and video do-overs because the WiFi is overwhelmed. Sadly network television, much of it anyway, is one big video conference. The talkers speaking from their bedroom/office/basement/dining room suddenly had to design background. Looks like the intro to the Brady Bunch. Sorry, I have digressed again.

All this video was put in place to give newly created manufacturers the ability to keep up with demand for buffet sneeze shields that are no longer needed by restaurant salad bars and have been newly located at checkout stations in groceries, pharmacies and doctor office locations. This pandemic could be the death of Golden Corral. I do apologize for another digression.

Parkinson’s causes us to stay in a lot but the pandemic has taken away what little go out time we had left. It was easier when I could see that Cheryl was doing well and suggest we go somewhere for lunch at some arbitrary time during the day. Sometimes lunch was late enough that we had to skip dinner and go directly to Aglamesis Bros. for desert. (Sorry again, I grew up in Oakley.) We would do this because predictability of well-being is difficult with a parkie, so you seize the moment. When the day is good we tend to pack it with goodness. Our life is constant adaptation to new developments. Living day by day is a reality into which one is pushed by the persistent ups and downs of the symptoms of PD.

Improvise, adapt and overcome is another tenet of the Marines. I like to use that attitude when new symptoms and difficulties appear as PD progresses. Over the course of the disease, a complicated and long list of symptoms and medicinal side effects are dealt with by the doctor, patient and caregiver one by one. Medical sources describe them all but not all parkies get all the problems. Those patients dealing with PD (parkies) are susceptible to the regular, run-of-the-mill old age crap that comes along; bad feet, sore muscles, sciatica, back ache, cardiac problems, UTI’s, yada yada, yada. Old age is a bitch and then you get Parkinson’s. Sorry, again I have digressed. (smiley face)

So, why exactly is it necessary for us to curtail our “go out” time in the midst of a pandemic? Are we any more susceptible than others to colds and viral issues. No, we are not. But in general going to a hospital for treatment is bad for parkies. The critical regimen of drugs, food, rest and exercise is foreign to the routine of a hospital. Both non-pandemic visits to hospital, two different healthcare providers, have been unsatisfactory. Hospitals simply appear to be unequipped to care for parkies with the same regimen used to by the caregiver. As caregiver and advocate for Cheryl, it is unimaginable how much worse that experience would be if I was not there to speak for her. It is too scary to think about. The idea is to stay away from hospital.

Adapt to change, always faithful, adapt and overcome, slogans to use for one’s own advantage against the annoying inconvenience of Parkinson’s Disease. Perhaps one day there will be a final solution that is not death.

(You though I would end on an up note, sorry.)