Great Unknowns

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For the past couple days Cheryl’s watch has been missing. It is THE WATCH. As a routine each night we place the watch on what I call the little hat. It is actually a little ring holder that was given to her by Anna. She put her rings and her watch on it but a little more that a year ago I purchased for her a gold chain to wear her rings as a necklace. She had lost enough weight in her hands that her rings would fall off in the car or a chair or the restaurant. This last was the scariest.

But I have digressed. –THE WATCH – has been missing since at least Wednesday. Kathy came to visit on Wednesday. I first noticed that her watch was missing in action when I made dinner and Cheryl and I sat down to eat it. She is right handed so she wears her watch on her left wrist. I noticed it was not on her wrist but I did not say anything because sometimes she does not wear it. Later when we went to bed I noticed that it was not on the little hat. For a couple days I would surreptitiously search for THE WATCH.

About noon today as she was preparing to take a shower and I was searching, I found her watch. She often puts rubber bands on collections of random items in her office. Her watch was on a book shelf in her office near some items that had been banded together. My heart leaped for joy. (I have not been following my own rule of looking around her office to see where things might be.)

Lately, however, I have become anxious about Cheryl’s mental health. The watch story is not about that, it seems to me to be slowly worsening as time goes on. And I think that I am getting used to it. (That idea makes me anxious and adds a fear of not recognizing changes immediately.) My daily notes about bedtimes, falls and other behavior are no longer daily. I note falls and other anomalies. Bedtimes are between 9:30 and 10:30 typically. Her impostor delusion (a noted behavior) seems to appear if she is up later than 11 PM and disappears into her office to “work on stuff.” Last night was one of those nights. I drove her around a four mile loop in the rain as she anxiously gripped her purse waiting to get home.

She was okay with me helping to change her clothes and get into bed when we got back. She wished me farewell and safe driving home. I left the bed room and open and closed a few doors as though I was leaving. I took off my jeans and sweatshirt that I had put on over my pajamas to make the drive. I turned off the lights and gently eased into our bedroom as her husband coming to bed. It worked. I worry that one time it will not work. So far my fear is unfounded but I still worry because I do not have another plan except for sleeping in the living area on the pull out sofa-bed.

At one time in the past I asked her if she remembered any of that. I learned that a reminder in the morning of odd behavior is unwarranted and perhaps even stupid. Introspection of failed ideas is useful.

I still wonder (and worry) about her failing memory and confusion and general mental heath. And of course how to pay for it all should she need extra care that I am unable to give her. Maybe I need some counseling? Or something to ease my mind? Engineers spend too much time what-iffing the situation.

On the morning news the U.S. Congress spent much of the taxpayer’s dollars annoying the CEO of TikTok. That social media platform gets more time per average viewer that Facebook and Twitter. Alas when will we discover the unimportance of Facebook and other social media? … except as another form of 1960’s TV.

Carpe Diem.

Like a Bunch of Random Boulders

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What Rose Forgot is a novel by Nevada Barr. Rose, the main character, is struggling with mental illness and memory loss brought on by some unseemly characters in her family. Her granddaughter helps her through the dilemma that she finds herself in. But one line early in the novel stuck out – memories fell into her head like random boulders from a bucket high up all jumbled with no relationship to each other.

Cheryl’s conversation, especially in the evening, is much like that. Kathy came to visit her today and I noticed that her conversation and memories are like that during the day also. Kathy ignored any incongruities if she knew they where there. Had I been sitting near Cheryl I would have had to correct her memory of people and events. It is really, really difficult for me to not jump in to the conversation to fix things.

But I am getting better at it.

I am not certain that I got the quote right but the image is there. Random chunks of memory come into Cheryl’s head. It makes me sad. Sometimes she realizes that this is happening.

Tonight when we came back from getting ice cream at our favorite ice cream store, she went off looking for her Mom in our condo. I did not stop her or correct her impression. And, to her, perhaps, Elaine was there.

I am in pursuit of her calmness of mind. And I admit it makes me anxious.

Carpe Diem

After Reflection

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When I started these thoughts on Sunday, I wrote that Sunday for me is a time for reflection. It is not the only time.

Thinking about the future of things while making the bed up and doing other needed chores for today — Qué será, será – Whatever will be, will be – an old Doris Day tune popped into my head. It made me smile. Was Elaine floating around today? Doris was a contemporary of Elaine’s in high school. Cheryl seems to sense her mother today. She has mentioned her a couple times in the present tense. This evening she asked if we could go visit her mom tomorrow. We will. She seems to know her mom is deceased. I did not remind her of that fact. Perhaps we will go visit her grave tomorrow and then find some lunch.

I wonder if I have planned well enough for our future. Whatever that may be. (Man plans, God laughs.)

Perhaps another meeting with the children is in order. I should make an agenda so that I do not forget anything.

Perhaps more reflection is needed.

Carpe Diem

Reflections

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Sunday for me is a day of reflection.

As I loaded the dishwasher I thought of David our middle child. He and Melissa are not feeling well.

I thought about Anna as I started to write this. Perhaps I will call her later.

I sent a text to Scott and Mavis and asked about a do-over of our unsatisfactory Cracker Barrel experience. We were compensated by the manager with 4 free meals. Scott invited us for dinner instead. I volunteered dessert. It will be Cheryl’s favorite – pound cake. I cleverly ordered two box mixes when I ordered online from the Kroger near us. I rarely order from Kroger but I did the other day for pick up on Saturday.

Cheryl was worried about organizing an Easter party last night. She thinks Easter is tomorrow or next week. No matter how much I reassure her that it is not for a couple weeks yet she is worried about candy and small children and hard boiling eggs. I convinced her to sleep a little and we could do that in the morning. (I had hoped she would forget her anxiety.)

This morning as she was putting on clothes she made reference to those thoughts. I texted her sister Nancy since Nancy was part of Cheryl’s thoughts. Nancy came to visit for awhile. They talked for an hour or so.

Often on the weekend this road of Parkinson is disturbing for me. The dementia aspect of Cheryl’s Parkinson is disturbing for me. I wonder if there is a class or something I can do to feel more comfortable with helping her.

More reflection is needed.

Carpe Diem.

It was My Own Fault

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It was my fault. I thought it would be a good thing to take her shopping. The target was J C Penney. The goal was towels. In retrospect I could have selected a different path through the store. The Men’s clothing aisle also leads to the home part of the store. (An AHA moment.)

She found a purse and looked at wallets but none were satisfactory. Or maybe I was an ache in the posterior. She told me she never gets to go shopping very much anymore. She is right. I probably also help guide her maybe more than I should.

From a male perspective this was worse than looking at a menu in an unfamiliar restaurant. It was overwhelming choices of color and style.

We did find towels and a bathmat. In the home area she told me that she likes bold colors. She selected a sort of hunter green, harvest gold and creamy white. She ignored the fuscia, orange, purple and tomato red. Our bathrooms are light green.

Carpe Diem.

Anxious

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What makes you most anxious?

This writing prompt magically appeared from Word Press. What makes me the most anxious is the fact that some new symptom or behavior will appear with Cheryl’s Parkinson and I will not be able to help her. Coupled with that fear is the anxiety that little techniques that I have developed so far will quite working. And lastly I will have to give in to the fact that I can no longer care for her myself.

Dog, Cup, Rainbow

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Like many old retired folks we have a Medicare advantage plan. When I investigated these a few years age I came to the conclusion that the United Healthcare plans offered through AARP seemed to be appropriate for our needs. There have been several adjustments and realignments over the past several years and I am not in any way an insurance expert but so far the system has worked for us. United Healthcare has a feature that sends a nurse practitioner once a year to visit to check their clients if they want to participate. Participation is voluntary. Cynical me wonders what benefit the insurance company receives from visiting it clients but practical me says there is some benefit otherwise they would have no reason to pay a skilled NP to drive around the countryside to visit clients. There is no altruism in corporate america. I agreed to a visit by Whitney on Thursday of this week.

UHC Housecalls (Whitney) came to visit that day. We went through all the medications that Cheryl takes for Parkinson and my few meds for high cholesterol and too much eyeball pressure. There is a modified MOCA test – draw a clock, remember three words while drawing the clock. The normal blood pressure, heart rate and lung listening happens as in any wellness visit. There is also a clip on gadget and an app that runs on Whitney’s laptop that produces circulation information. Good news we are both alive! And one of us could remember the three words.

In addition to Whitney coming to visit, so did Nancy, a friend of Cheryl’s from church. In fact Cheryl has had a different someone come to visit every day this week. It has been busy and that tires her out.

Cheryl was showing signs of exhaustion on Wednesday. In the evening about 11:30 pm she needed to go home. I was heartbroken that night and tired myself from the time change. The impostor (Capgras) delusion seems to appear about once every two weeks. I put her in the car and drove her around the block. I am usually terrified that this time it will not work. This night it did (still).

Today it was hard but busy. Writing this on Thursday, I wrote that I forgot her pills at 1 pm.  Damn. That will mess up her mobility and her mind. Later on Thursday I noted — it is almost 8 PM and I think she is back to her normal for now.

Cheryl could not complete the modified MOCA test on Thursday. Today, Friday, she went to lunch with her friend Barb. The week of visits, no matter how well intentioned, is over.

Tonight we went out to get dinner at one of our favorite little restaurants. St. Patrick’s Day pub crawls where in full swing on Friday night. [Éirinn go Brách] The food was good and the crowd was raucous and loud. St. Pat showed up on the second day of March madness.

Carpe Erin Diem.

More Things Learned

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In my little book – The Hitchhiker’s Guide to Parkinson – I have a section where I note things that I have learned along the way as Cheryl and travel this road of Sam Parkinson.

Today it occurs to me that although I want Cheryl to get up and get going to exercise class because it appears to me that she actually likes this exercise class and although she got up late she still has time, suggestion is the only tool I have to motivate her. Any comments beyond – if you still want to go to exercise class you still have time – reminds her that it was her idea and answers her unspoken question of, is there still time? – are useless comments and could make her feel that I am being pushy.

If she senses that I am being pushy she will resist it every time.

Another technique that I use but often forget about is what I call bump and run. I can use the fact of her really poor short term memory to plant an idea.

This morning it occurred to me in addition to using suggestion as a way to get her thinking about getting up, if she did not I should just let go and not worry about it. I understand why it is good for parkies to exercise but she is not always interested. If she perceives it as her idea, she is in, if not, forget about it.

We made it

I realized that I can switch from encouragement to nag-o-ment if I do not pay attention.

Carpe science Diem.

Scary Morning

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Thank god for day light saving time.

I could not wake her up. Never mind that it was the first day of the idiot time change. We did not have to travel to have the powers that be declare it to be an hour different than it was.

Cheryl slept poorly two nights previously. I was excited to get her to bed without too much fuss. I could tell she was tired, very tired. At dinner she was hallucinogenic. She spent some time discussing dinner with a little brown haired girl who was inside her head and did not answer when she she asked questions.

With her walker I got her to the toilet and sat her down. I thought that perhaps we might not make it. I changed her clothes with no help from her. She would not or could not open her eyes. I dug out the transfer chair to roll her to the table in the kitchen. I got her to take her first meds one at a time. She was awake but not awake. Breakfast was a non-starter for awhile. I rolled her to her recliner and got her it it.

I turned on one of the Sunday morning newsy shows I saved on the cable box. I turned it up so she could hear it. And I watched her for a bit. I left her seated in recliner and did a few chores like dress the bed.

She was awake when I came back 30 minutes later. She was watching the show.

As the day goes on she relates periods of delusional thoughts. And as we talked about those things she has begun to exhibit lucidity.

It is a very very strange version of the disease of Parkinson that Cheryl has.

Carpe Diem.

Tonight for the First Time

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Tonight at dinner for the first time she carried on a conversation with an apparition that she saw at the dinner table.

I invented a new recipe – Macaroni and cheese with chicken – she liked it. She even raved about it. Then she proceeded to discuss this casserole with a small brown haired girl that she saw at our kitchen table. We have a small kitchen with no external lighting so when I changed the ceiling fixtures a couple years ago I selected a couple of flat square LED fixtures that produce 5000 lumens each. It is bright. There was no child with us. There is very little shadow except directly under the small table we have there. I know the girl had brown hair because I asked. I asked Cheryl not the girl.

Cheryl asked her how she liked it. And then responded, “So, you are not going to answer?” after she had waited for a bit. To Cheryl this girl was very vivid. She did not look at me and recognize the astonishment on my face. For several minutes she quizzed the little girl about the food.

Eventually the little girl left us. I did not ask where.

Cheryl did not invite her for ice cream. We had that for dessert.

Cheryl did not sleep much last night. Her hallucinations are strong when that happens. It has been a very weird day. I tried to keep up with the strange conversation. Some stories are made up out of whole cloth. In “What Rose Forgot”, a novel by Nevada Barr, the writer describes that Rose’s memories fell into her head like rocks from a skip loader or similar analogy. In Cheryl’s case chunks of old career work experience, high school and her early computer system help with the grade school our children were in, sort of commingle in the narrative. A simple “ah huh” or “no kidding” keeps the narrative developing as we drive to somewhere.

In church tonight I noticed that she looked at the same page of the church bulletin all through mass. Somehow I could tell that the words were meaningless to her. It saddened me.

Carpe Diem.