Same Old, Same Old

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Once in a while I am stunned by how much our world changes and how much it stays the same. E.B. White of Charlotte’s Web fame wrote many essays for the New Yorker during the early to late 20th Century. This is a good one from 1948:

Expediency — 1/31/48

WE HAVE OFTEN WONDERED how journalism schools go about preparing young men and women for newspaperdom and magazineland. An answer came just the other day, in a surprising form. It came from California, via Editor Publisher. We quote:

San Francisco—Public opinion polls are scientific tools which should be used by newspapers to prevent editorial errors of judgment, Dr. Chilton Bush, head of the Division of Journalism at Stanford University, believes.“A publisher is smart to take a poll before he gets his neck out too far,” he said. “Polls provide a better idea of acceptance of newspaper policies.”

We have read this statement half a dozen times, probably in the faint hope that Editor & Publisher might be misquoting Dr. Bush or that we had failed to understand him. But there it stands—a clear guide to the life of expediency, a simple formula for journalism by acceptance, a short essay on how to run a newspaper by saying only the words the public wants to hear said. It seems to us that Dr. Bush hands his students not a sword but a weather vane. Under such conditions, the fourth estate becomes a mere parody of the human intelligence, and had best be turned over to bright birds with split tongues or to monkeys who can make change.

E.B. White – “Writings from the New Yorker 1026 – 1976”

It seems this is still true today. The challenge is to think and listen even if you do not want to hear the message.

E.B. White’s essay in January of 1948 is directed towards journalism and the fourth estate, however, it applies to other situations as well.

Parkinson’s caregivers, be aware of all of the aspects of this annoying disease. Learn everything you can from all sources. Do not accept a future that is bleak and pessimistic. Accept the day as it comes. Be helpful and encouraging. Be aware of your own emotions.

Be well yourself.

Early Morning Conversation

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Where is this place? I don’t know where I am. This, a conversation from two days ago, sticks in the front of my thoughts as I write this. Where is her Parkinson’s taking her?

A few weeks ago, Cheryl slept late. After I had been up for an hour I went in to check on her. She was sitting on the edge of the bed waiting for someone to come get her. She thought other people were here. I had been watching TV news.

I dismissed it as early morning muddled mind.

On this morning I was able to get her up to take her meds shortly after the alarm went off. I did this yesterday and she slept for another couple of hours as she had not slept well during the night. She did well after that. I patted myself on the back for getting through a new behavior of sleeping late.

This morning afterward she wanted to sit down on the edge of the bed and I assumed she was going to decide sleep some more or get dressed. My assumption was a bad one. She needed me to stay with her and help her. Later she came out of the bedroom angry with me for not getting her up for church. After a deep breath to swallow an equally angry response I assured her that today is not Sunday and the church service is on Sunday at 10.

On this third day I changed tactics a bit. I brought her meds, helped her to the bathroom and back to bed. I laid with her for a bit until she started snoring gently. I got up.

Checking on her later I found her sleeping on what is usually my side of the bed. I do wish I could see inside her mind to take part in her experience. Her sister and she slept in the same double bed as children. Often in her dreams when her vocalizations are understandable she is talking to her sister. Sometimes she has told me in the dark as her surrogate sister to stay on my side of the bed and quit hogging the covers. (I’m smiling here.)

Her sister is in her thoughts. Jan has spent the last several days in two different hospitals in Florida with blood clots inhibiting breathing. There is no Covid-19 according to the testing but deep vein thrombosis is suspected. She is home now with doctor appointments and physical therapists coming and going. The whole family is worried for her health but especially her childhood bed mate.

Writing this over a period of several days I have come to understand the agonizingly slow progression and the painfully irritating non-linearity of that progress.

In the late afternoon and evening her questions and conversation indicates that she senses others in the room or nearby. These ethereal presences are often young children. Tonight she looked to see who else was joining us for dinner. Later in her office she was talking someone about markers and where they could be found if they needed them to color with.

Her doctor says, if these become troublesome, drugs can be prescribed to combat the symptom. Troublesome how? Miragic little people are rarely trip hazards. I suppose if she trips over things that she cannot see because of the hallucinogenic little people, that would qualify as troublesome.

Sundowners syndrome. It is a thing. https://www.parkinsonsresource.org/news/articles/what-is-sundowning-what-causes-it-and-how-does-it-impact-the-caregiver/

Sleepless Nights, Urgent Wanderings

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2AM: I hear the shower running. I felt her get up and realize she is not merely washing her hands. Cheryl does not know what time it is. Or, probably more correctly, she does not have a good sense of – when should I start preparation for church this morning. Church is at 10AM. I get her to turn off the shower and come bad to bed reminding her that it is eight hours away, so, no hurry.

5:30AM: Can I lay down here for a bit? She awakens me and asks permission to lay back down. Sure, I say. Let me help. Did you take a shower?, I ask. She is no longer wearing pajamas. She is in her bathrobe and damp. Yes but I need to lay down for a bit before we go. I help her back into bed and ignore the conversation about what time it is. I’m a little peeved at myself for not detecting her getting up again or hearing the shower run.

6:30AM: She gets up. Most parkie’s have lost their skoocher so in Cheryl’s case when she gets out of bed it is like trying to sleep through an earthquake – magnitude 9-ish. I am still wondering how I slept through her getting up at 5AM.

7AM: I hear the TV come on to the morning news and I relax a bit. I think that she has taken her morning meds and is sitting for a bit watching the news. I relax enough that I fall asleep.

8AM: I get up to see how she is and discover her asleep in her lounge chair. I get some coffee and reheat it in the microwave. I look and find that she has not taken her meds. I get them for her and some water and apple sauce for the sticky ones. She announces that she does not think she can go to church.

8:30AM: She goes back to bed for a nap.

10:15AM: She is up again. We have coffee cake and tea for her , coffee for me.

The days begins again. Parkinson’s disease sucks but there is no reason to loose sleep over it. The loosing sleep part will occur naturally.

Leading Indicators

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She did not sleep well because of thinking about anxiety for family and  staying up late – past 11. She was off most of the previous day. More sleep into the morning is impossible.

All indications of the day to come?  She is very tired. At 8:30am, I help her back to bed for a nap.

At 10:15am, oh what a beautiful day! She is awake and only off schedule for meds by 15 minutes.

Interesting conversation when she came out — Isn’t it amazing how much this place looks like ours? She said. Whenever I come out on this floor I’m amazed.  All the same pictures like we have are hanging up. I agree it is amazing. I say it is very much like our old place.

In our old house we had two floors.  She still uses this terminology and I do not correct her. Maybe I inadvertently promoted two floors in her mind? She complains of hunger but is unsure of what will satisfy that hunger. I suggest a couple of the cookies we made a special trip to buy yesterday. She brightens and says yes to that idea.

She is improving while I watch her eat some cookies and OJ.  Working the puzzles in the newspaper is her favorite awakening activity.

She seems okay for the moment.  I will go back to my baking. When I come back from assembling the fruit pocket with yellow crumb topping the conversation turns to Catholic church and thoughts of a female priesthood.

She ponders the future of any of that and compares it to our used-to-be Sunday dinners. A reminiscent memory of times past brings forth tears of regret and sorrow over experiences lost to time. At our old home – a five bedroom house with plenty of space for kids to roam and adults to sit and converse around the table while waiting for digestion to make room for dessert – we often had many for Sunday dinner. Those days are happy ones. They are fond memories.

These days of a smaller place and dealing with Parkinson’s disease do not allow for that in our home. (It is perhaps time for the children to start that tradition but they seem uninclined to do so.) It is understandable. Their families are young and vibrant. Many distractions occur on the weekend. Feeding old folks is not one of them.

The oven beeper rings out its merry song! The baking is done! The baking is done! Come get the baking. It is done. (smiley face) Here is a picture. The only thing left is the icing but they have to cool for that to occur.

Cherry pocket Coffee cake: undefined my drizzle got away from me.

I like to bake. On another part of this blog I published my Cinnamon rolls. I could go through in laborious detail how I make these coffee cakes. They have become Cheryl’s favorite. I make them often.

In the midst of this scribble my sister-in-law in Florida announced she is negative for Covid-19. That’s really good news but her doctor believes she may have clots developing in her lungs. That is ominous.

She walks by to announce she is taking a shower to get cleaned up. We have our listening for thumps segue and she goes to get cleaned up. All was going well again, but, alas it was time for the 1PM meds. In fact she was late taking them.

This has turned into a rambling account of a day in the life. I did not intend it to be but this day, for whatever reason, is hard on Cheryl. I think that even though she knows there is little she can do for her sister from so far away, she is very anxious about her.

These two women slept in the same bed as children. Often in Cheryl’s dreamlike state in the middle of a semi-dreaming world she will see her sister. She has several times asked me in the morning if Jan had gone home or when did Jan leave? Jan is part of her hallucination that occurs often in the early morning brightening gray light. Their connection is strong through PD and yet their symptoms and treatment are so dissimilar.

We are able to take a walk at about 2:30PM. I admire her persistence. It can be hot in Ohio in July. So we take a walk of about a mile around this little park nearby. It is slow going but we get through it by resting in the shade occasionally. The reward is a stop at a nearby creamy whip ice cream store.

We have decided on waffles with fruit topping for dinner. That was going to be breakfast, then lunch. It became dinner. (smiley face) Things take a little longer in the parkie world. Sometimes you get waffles for supper. Other days not. She is laying down again.

No more pertinent updates from the Florida chat line. The text messages have gone quiet for a while. Perhaps we can sup at 6PM.

Time to get started just in case it happens.

A Nervousness in my Gut

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There are so many concerns and worries with Parkinson’s that any extra things are a distraction and unappreciated.

My sister-in-law has sent herself to the hospital in Florida because she is having trouble breathing. In addition to PD she is diabetic. Her PD symptoms are different than Cheryl’s but it is still very worrisome. It has been our experience that many hospitals are unequipped to deal with parkies. It is not that they do not understand the disease but clinically they do not seem to get the rigid meds schedule.

In my sister-in-law’s case food intake and timing is extremely important. As well as timing of her diabetes meds.

This of course is on top of the Covid pandemonium and other things going on in our lives. Cheryl is anxious for her sister. I am also. She is far away and the communications are broken by distance and isolation.

The worry continues. And, oh by the way, Parkinson’s sucks!

Another Day, Another Nuance

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Parkinson’s disease causes ever so slight changes every day. Many are so subtle they cannot be perceived until many days or weeks pass. The caregiver wonders when did that start?

How can something so debilitating be so subtle?

Shit Happens — An Old Forest Gumpism bumper sticker

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Nothing happens without a reason.

But everything has an explanation.

Somethings require no explanation.

But somethings need a reason.

Cheryl: I went to the other bathroom because someone was using this one. Me: Who was in there? Cheryl: My sister Jan and a couple little girls.

A conversation early this morning with Cheryl. It worries me. Early in the morning she sees people moving from sleep to wakefulness.

So why does this make me so angry.

There are other things going on in my life of course. One of the residents of our condo association is in dispute with another resident that has little to do with the HOA accept that resident number one wants the HOA to fine resident number two and has chosen to communicate with the board through her lawyer. Why can’t people get along? Admittedly R2 lives above R1 and R2 has had four plumbing issues that have affected R1 but all have been repaired. Lots of intensity that boils over occasionally. Maybe that is why I am angry.

Covid-19 has everyone nervous and hunkered down at home. Cheryl and I are in the “maybe you could die” risk group. If she gets ill and lands in some hospital, she might not die but she will be off her meds and in a crazed state for some time after, not to mention during. Been there. Do not want to go back. Maybe that is why I am angry.

She decided to make potato salad for Sunday’s July the 5th celebration. We will have enough kartopfel salad for 20 people. (smiley face) And I got stuck with many of the cooking duties. Maybe that is why I am angry.

Or maybe my concern is for her and focused on her and her well-being and these side distractions keep requiring attention. Maybe that is why I am angry.

Our niece is in labor and what would ordinarily become a happy watch and wait party by family has turned into a listen for a text and read it party. (smiley face). A good distraction but not one that makes me angry. It is her first baby. A baby she has been trying to have for a long time. She has had problems with earlier pregnancies. This one is an added worry.

Seems to me that sitting at home worrying about what is next is counterproductive. I just do not know how to live life under the shadow of Parkinson’s disease and Covid-19. My go to survival mode for this kind of sedentary activity is to find a good book(s) and an author or two and read their collected works. Break that activity up with bike riding, walking or some other form of exercise and I can hunker for a long time. Through my working career it has worked when faced with some long project — work, read, sleep, repeat. I do not think it is working correctly with PD. Maybe that makes me angry.

I am charged with the task of helping someone else navigate through problems and physical difficulties not of her making. Who has cognitive disability. Who sometimes wants to do crazy shit like make enough potato salad for twenty people. But I love her. I just need to get over my anger at the disease and what it has done to her.

Facebook tells All

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A colleague of mine posted the following on Facebook:

I have screwed up as a Man, as a partner, as a parent, as a Son, and as a friend simply because… I don’t always do or say the “right things”.

I have a smart mouth, I have secrets, I have scars because I have a history.

Some people love me, some people like me, and some people might hate me.

I have done good in my life. I have done bad in my life.

I go without shaving sometimes and I don’t get dressed up half the time.

I may even be crazy, random and silly. I will not pretend to be someone I am not. I am who I am. You can love me or not.

But if I love you, I will do it with my whole heart, and I will make no apologies for the way I am and if I do not like you I promise you that you will know that too.

I AM ME….And I would not change it for the world.

GENTLEMEN, I dare you to put this on your status, with a picture of yourself, if you are proud to be who you are.

— William Jackson on Facebook

Thanks Mr. Jackson for the writing prompt. But, but, but! There are some changes I might make. I am older and like many older adults wonder, what if? I have no regrets about the path I chose through life. Looking back, some small things I might have done differently. There are, however, one or two big what ifs.

At the end of my first college career in 1972 the country was in the midst of the Vietnam War and coming out of a mild recession. We were married. Our first child was on the way. My greatest focus was on finding an income to support my wife, who had supported me through my last two years of university life, and our family. I needed a paying job.

Networking works! I found two positions within forty-eight hours of each other. Looking back from fifty years, I embellished it a bit in my mind. I had interviewed at a company with the engineering manager through a contact of my father on a Monday. On the Friday of that same week the company offered me a job. On Monday of the following week the head of the department of Engineering Technology asked me to visit with him in his office. The ET department offered me a position of teaching assistant. The position had a stipend and the benefit of paid tuition as I was expected to work on my Master Degree with doing my TA job.

I accepted the engineering position and never looked back except occasionally when I read things like Mr. Jackson’s post on Facebook. What if I had accepted instead the TA job at Miami. Who knows?

I never lost the mindset of learning. Eventually much later in life, Cheryl encouraged me to focus my efforts and I achieved a M. Ed. from Xavier. But who knows? Who knows what academic heights I could have achieved? Who knows? Impossible to know! Time travel is unavailable. Face forward and go where life takes you. Carpe diem (from Horace)

As we, Cheryl and I, live with Parkinson’s disease, I am more cognizant than ever that we cannot go back. There is no benefit to looking over one’s shoulder and wondering what if. There are so many things in life that unfortunately cannot be changed without prescience. The idea of unintended consequences must be considered.

undefined A Chrystal Ball is a wonderful thing. But I do not own one.

… the Adjunct Wizard

There is a lot going on or Nothing going on

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..undefined Virus pandemonium will cause me to not watch any television news anywhere mainstream media or minor-stream media. Too much like the weather report.

I quit watching the weather report years ago. What a great job — weatherman. Death by PowerPoint with a guy (gal) in the picture as part of the slide set. What is it going to do today? The answer is usually one word but talented weather guys can make that word last for several minutes. There is a teaser early in the society report to get you to stick around for the first set of commercial ads. Weather in 10 but first this…

I may have first noticed this sitting with my widowed mother who was an avid cable news fan. She was not discriminatory. She watched all the news channels. Soap operas were boring to her. She watched news shows. News shows are repetitive. The news outlets allowed opinion to creep in. The morning cable shows modeled themselves after the NBC Today show. three or four folks sitting on a couch or around a table yakking. Easy to let opinion in when folks are yakking around a table like folks do. Folksy.

Mom would say, “The world is going to hell in a hand basket.” I would answer, “Maybe. But it’s not that bad. What’s a hand basket anyway?” in a feeble attempt to distract her away from the stupid tube’s opinions. If you are house bound as many elderly are it sure seems like the world is going to hell in a hand basket especially if your only source of information is cable news outlets all of which come with the cable television package.

Our house did not have cable service until Cheryl started spending more time at home. Faster internet came as a fiber optic cable and with it a package deal with cable TV. And now we don’t really need TV since Big Bang Theory is off the schedule except as reruns. Parkies sometimes have a hard time following any story line. Things that may be inferred from opening scenes need further explanation. For Cheryl focus is hard so she rarely sits through any complete show.undefined

This is Birthday card week. The last week of the month is birthday card week for getting together the batch of cards for the next month. HAPPY BIRTHDAY TO YOU ALL! It is an elaborate task made harder by the fact that Cheryl automated her birthday list with Microsoft Access years ago. Now with the PD creeping into her cognition, it will take several days for her to print address labels and correct an address or two in the list. It is way faster now that it is more obscure to her parkie brain.

Birthday card week starts with a trip to the Dollar store for a batch of ten or fifteen cards for the next month. It ends with a memory test to remember which card was selected with care for which person. It is almost complete.

Last week was “Make a Mask” week, as in, I need a different mask so I can get my hair done. Some things take a little longer but they get done.

Life moves on. There is a lot going on or not so much.

A New Day

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I write a lot about PD as a way to vent.  Today Cheryl made French toast for breakfast.  Her not me. I mentioned it last night at dinner which I cooked. Most times I cook.

This morning I had to do my standard male task and get the electric skillet out. Then I went to my chair for coffee and the paper. She cooked.  Like old times.  … tearing up as I think about it.  Like good times.

And that’s my complaint today; just when you get used to the everyday annoyances they go away for a while.  Carpe momentum…. didn’t have coffee yet. 

Today was a great day. Cheryl got to exercise in her PCF class. We had a little lunch at home afterward. I went to ride my bike in the afternoon. When I got home she was sewing and listening to music.

She rested at 4:30 until about 5. Pretty normal reaction to the meds in the afternoon. I cooked dinner and she ate it all.

Now she is sewing some more.

Parkinson’s disease sucks and then it’s gone.

Exercise before Covid-19