confusion

Time Is… Precious

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Time does not move in one direction. Time is never straight. – Alexis Pauline Gumbs

A long and winding road… – the Beatles

Life is a winding road. – Sheryl Crow

Observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction. Indeed a wiggly and tedious road life is.

I subscribe to poetry magazine. It is a small unadorned volume that appears in my mailbox every few weeks. It takes me elsewhere when it comes. The quote that appears first is on the back cover of the September volume. This morning it attracted my eye. My thoughts went off in a similar but musical direction. I found the rest of her writing inside and I read it for a bit.

Today, however, is for the students. The introduction to industrial robotics and computer integrated manufacturing class for which I am the instructor is very technical. The students are young and vibrant. They are just beginning. Near the first curve or the first fork or the first turn-off, they must decide continue or turn. Is this the way? They are not here today, so I can review their work without them yammering in my ear about why they did this or did not do that because I was unclear. Many will not or are unable to ask a question. Many are able to accept another’s work as correct and useful. (No it is not cheating. I want them to help each other.) At this early part of the journey many believe (I think) that they still need to be spoon fed. A few are beginning to try things on their own.

The software is complicated and I have not found the way myself but I have a different motive. (I want them to discover for themselves the bigger picture.) They are able to twist the software into a knot that is hard to untangle. Learning programming techniques on the fly is fun, terrifying, frustrating, satisfying and tedious. → Observation, code, check, test, reaction, observation, coding, check, test, reaction, observation, more coding, check, test, reaction, observation, coding, check, test, reaction, observation, much more coding, check, test, reaction, observation, coding, check, test, reaction, observation, coding, check, test, reaction, observation, yet more coding, check, test, reaction. Will this never end? (I imagine some in the class thinking this to themselves because they are reluctant to say they are struggling out loud to the instructor.) Indeed, a wiggly and tedious road coding is, similar to life itself, similar to writing.

I can feel it coming in the air tonight… – Phil Collins

A wiggly road teaching is. As I work my way through the material which is specific to industrial robots of a specific manufacturer, my thoughts go toward how to generalize techniques and ideas to other areas. Programming (coding) a process is an art form. It is both technical and elegant. Although I have had the good fortune to do this work throughout my working career, I recognize I do not know all. Teaching, mentoring and instructing is humbling for me. I find out how little I know.

… all I wanna do is have some fun before the sun comes up over Santa Monica Blvd. (also Sheryl)

All of these thoughts and others came tumbling into my head when I read Alexis Pauline Gumbs’s quote on the back of Poetry. On some days, most days, poetry centers me. When I read the quote from her above I felt a pull to the content. I was floundering with industrial robots. Alexis was not writing about that. Alexis was writing about a fellow poet Cheryl Clarke.

“Time is not straight. Time spirals and veers, embraces and releases. She shows up with a U-Haul after one date. Time doesn’t move stubbornly forward. She comes back and helps an ex-girlfriend mourn the loss of her more recent lover, maybe even helps her raise her kids. Time is not obsessed with progress. She wants you to come back and revisit lessons you thought you had already learned. Time shows up brand new, as an imp and a trickster. Time is guided not by security, but by the risk of love. Again.

This instant. This triumph. Time is a lesbian.” — Alexis Pauline Gumbs, Poetry, September, 2025 issue

These are powerful words. ( “She shows up with a U-Haul” made me chuckle.) Time (life) is an instructor. Wisdom is “she” in the Bible. We would do well to listen, heed, be present for the message. Our time here is short and winding. Listen. Observe. Embrace the tedium.

Carpe Diem

Too Busy Too Much

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Can life be too busy? Can it be too much?

At certain times in a time of creativity it is. Yes it can.

I have not been good at blocking throughout my life. I must learn that, the ability to block certain times for certain activities and to block out other thoughts while doing those activities, is helpful to following creative thought.

“Human life revolves around four big questions: What is the meaning of life? What is the ultimate source of right and wrong? How can we reduce the amount of suffering and injustice in the world? How can we understand the world without resorting to magic, using reason and evidence instead? – Jonathan Rauch.” I read this in David Brook’s column in the New York Times. What does that have to do with “too busy”? Throughout my life (and career as a controls designer) I found that when I was up against a particularly vexing problem – dilemma, conundrum – simply walking away mentally for awhile helped with finding a solution or at least a path towards one. Some would call this prayer. I think of prayer as a literal request, so, I do not. (Maybe I should think of prayer differently – a different topic.) Although I am not good at blocking, there are too many devices nearby, I am able to about-face my mind and focus entirely on something very different. Jonathan’s list groups some of the topics hovering in the background that jump into the foreground when I let my mind wander off the vexation.

These are all deep enduring thought exercises. If I truly want to abandon rational thought for awhile I ponder the meaning of Facebook, TikTok and X.

Writing these small blog posts help me to disengage for a bit.

Simply disabling the ringer on the mobile phone is remarkably satisfying.

Life is too busy.

I want to devote more time to writing. I want to devote more time to travel. I want to devote more time to service others. I want to do more me before there is less me to do it.

Carpe Diem

On To…

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I originally wrote most of this in December of 2021. The lessons I learned and techniques I developed for communicating with my wife who was dealing with Parkinson disease and associated dementia are applicable today. The lessons of life are illusory and fade if not maintained.

I am learning things about myself from Debbie that I was only beginning to learn from Cheryl and taking care of her at the end of her life. Dementia is a misunderstanding between the brain and it surroundings and the sensors it uses to detect the environment. An oversimplification to say the least but a miscommunication certainly. Missed communication is at the heart of any conflict or dispute.

Lessons from making cookies

December, 2021: Cheryl’s Cookies (Not the Commercial Venture)…

Living with a parkie (person suffering from Parkinson’s disease) makes me alert to new information when it comes up. That being said I do not always recognize my new task nor do I always recognize the information as new. This is about becoming a master cookie maker on the fly. I was not completely inept. I make bread often.

Executive function and loss of it…

Dementia occurs in about 50% of Parkinson’s sufferers who have had it for some time. Mild cognitive impairment often shows up first, followed by hallucinations, delusions, misunderstanding, memory loss and inability to follow simple directions. It is disheartening. Some behaviors are side effects of medications. Some come with build up of unpronounceable proteins in the brain. No matter the source, the behavior can be disheartening and annoying from a care partner perspective because the person you once knew is physically there and mentally not completely there. From a care partner’s perspective it seems that the medical community does not forewarn anyone about this aspect of the disease.

I am a retired engineer and have an innate curiosity about everything around me. Cooking, baking, bread making and all things requiring an oven have a particular fascination. There is practical chemistry in cooking both with the ingredients and the people cooking them. To the question, why do it that way? Near the end, my wife’s reaction often was anger to some perceived slight or merely to the wording of it. (She is the parkie in this story but that may have little to do with it. I caulked most of these reactions to her PD and her mental state at the time.)

It is an engineer’s question. It starts with me. Words and question structure are important factors. Engineers always want to ask why something is done some way or simply is some way. Why often sounds like a challenge, even to other engineers, if it is not asked properly. Tenor is detected in tone of voice both in the sound we make with vocal chords and inside our own head. Cognitive impairment interferes with interpretation of subtleties of tenor and tone of voice.

How to do…

December, 2021: Our latest challenge to our marital bliss is Christmas cookies. Baking is a hobby and a passion to me. I like to think I have perfected my meager talent at making breads of various types and shapes. I am proud of that but lately I have pushing into cakes and pies. The pandemic pandemonium gets to us all in various ways.

My perception of making cookies is one of a trivial exercise in baking. That is an incorrect perspective but one that I have internalized. December is cookie making time. Cheryl is helping me or I am helping her that is unclear in this reminisce but her Parkinson is affecting her more and more. Two cooks in the kitchen is a recipe for a challenge to peaceful coexistence. Two bakers near an oven enables battle lines to be established and defended with vigor. Starting a question with why is akin to removing one’s glove and casting it upon the dueling ground. [Emoji (:-)] Cheryl has made perhaps a giga-dozen (I just made up that word) of cookies. I have made none. What can I say to redeem myself? Engineers ask why a lot and in this exercise I learn to find a more agreeable way to get her to tell me what she knows.

The lead-in; I do not understand, why do… seems to temper the why. Small children ask why a lot until finally the because-I-say-so comes out.

Where to start…

To a skilled cookie baker the recipe is merely a guide, a refresher, a list that says these get lemon zest. Interestingly, that is much like how I view a new bread recipe. I am on familiar territory. (He thought to himself with arrogance.)

Not so fast apprentice! Nearby there is a master cookie baker. Do not question the master’s skill at her craft with disdainful utterances such as, why and how come? All will be revealed. But also keep an eye on the recipe and make answers such as, yes, we have put that in the mix and suggestions, such as, shall I add the butter?

Sometimes with creeping dementia ingredients are forgotten. Sometimes without that factor ingredients are forgotten. Try to be kind and remember that no one got up in the morning thinking, how can I mess with his mind today? Most importantly, do not raise your voice two octaves, that is a dead giveaway to your ignorance.

How does one check for doneness? (It is common sense!) Look at them. (the “fool” is left unsaid.) They will look right. What is right? (and on and on and on…) Cooking is a process. It is learned by doing. Life is random. It is learned by experience.

The 3C method – Cut out the Crap in the Conversation…

To a person standing nearby this conversation sounds rude. It sounds like one person is giving another orders and it can be that way. If done with kindness in the communicator’s heart and with understanding that a Parkinson’s patient also may be dealing with confusion issues, it is neither rude nor demeaning in any way. Often a person experiencing Parkinson’s cannot or does not get the implication or inference. Be clear. Have kindness in your voice when speaking. No teasing.

When tasting the cookies later after they have cooled, do not say, “YOU FORGOT THE SALT!” Instead say “These seem off somehow. Did we forget an ingredient?” Gentle discussion allows for thoughtful assessment rather than confrontational reaction.

The onus is on the care partner not the parkie to be patient, kind and clear. Be aware, care partner, that this is hard to do because you remember how your partner/spouse/parent/friend was before. (Good natured teasing may be misinterpreted. Be certain that your partner is not confused.) You too can be unaware of how they are now. The Parkinson’s patient may become sad or angry. Be persistent if you as care partner are very concerned about safety. Add some love to the conversation if you think you are not getting through the confusion. Strive to not become frustrated and raise your voice (two octaves).

We did wind up with our first battle batch of cookies. Although they were a motley crew, they tasted fine.

This episode came to me as I was thinking about other experiences that have cropped up in my new relationship with Debbie and I am getting to know her family and friends. Patience, kindness and clearness are useful aspects of communication with anyone, especially someone you care for deeply. Debbie has told me several times that she does not always know when I am teasing her. Perhaps I should not do that at all. The ability to tease someone comes with trust and love and familiarity. Perhaps I should remember that I do not know what I do not know and err on the side of kindness and ease, not tease.

Everyday is a winding road. I get a little bit closer. – Sheryl Crow (Good poem/song – read the lyrics)

Carpe Diem.

Men Don’t Like Questions

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Men Do Not Like Questions and Women Need Reassurance

That is a tag line that provokes thought. Debbie said that to me in a conversation we were having about I do not know what. It struck me as so true to stereotype I stopped to write it down in my notes app on my phone.

I observed the stereotype at work in an extra class I taught this spring at the community college. A logistics difficulty with the school caused me to take over a class that had been started by another instructor.

Young men in their all knowing way can plunge off into the abyss of I don’t need any help/I got this. In this case a little extra knowledge is helpful. They were building a control panel for the semester project. For one the magic smoke leaked out of a component. This is never good in electrical work. The young women, there were three, were unsure of their abilities and were more cautious. One told me one day, “I don’t feel like I know what I’m doing.”

I wrote to her at the end of the class my thoughts about her performance in the lab project portion of class. I do this for all of my students. I have done this since my student teaching days. I think of teaching and instructing as guiding the students. Lecture implies an all knowing authoritative relationship. I do not have that style. I think it helps me to get to know and understand their abilities and how I can guide and help them succeed. Along the way I make notes about them in the hope of aiding the journey.

To Simara: I recognize that my taking over the course midstream was disruptive to you. In my short time with you and the rest of the class I took the time to observe a few things about each of you. I am writing this to you to report those observations and offer some unsolicited advice. I detect that you are unsure about many things both in this class and around you in life. That observation may be an incorrect one as I have only known you for a short time. And yet you were not afraid to admit it as you said, “I don’t feel like I know what I’m doing.” That admission is a bold thought and shows an intelligence beyond your years. The important thing is that you asked for help. You may not understand how well that ability will serve you through life but it is a very useful ability to ask for help. Not everyone can do that. Often they are worried about looking stupid and unknowledgeable.

The whole idea of this class is to gain some practical hands on experience, so at the end of our time together I wrote to everyone to tell them what I thought of the class as a whole and to thank them for the smooth transition. They gave me the impression that the previous instructor did not like to answer questions. That simple fact would explain why they were so tentative about asking for information about the project they were working on. And for the project they were working on, they had incomplete information.

This experience was not unlike several business experiences in which I was tossed into a project that was going awry with the wish of, see if you can fix it. Sometimes that means starting over midstream rapidly and using as much of the existing disaster as possible. Sometimes it means finding a new piece of paper and resharpening the pencil. I failed one young man, Sam, who raced ahead not knowing he had incomplete information.

Not only do men not like questions but they do not like asking questions. Women on the other hand ask lots of questions. Follow up questions, many follow up questions help to define the edges of the path to be taken. The path becomes clearer as the follow ups serve to sweep the leaves off the pavement.

Debbie does this to me. My usual response is, “Hmmmm…” while I am stalling for time to answer whatever she asked. Sometimes our banter wanders off into the weeds while I am thinking about what I am thinking about. (It is another comment of hers, “you are always thinking about what you are thinking about.”) She is right. I am not a spontaneous answer-er. I have several stall techniques.

She asks hard questions sometimes, often actually. Her questions are often feeling questions. The answers to which are very often hard to put into words. I will see her today. I look forward to our long conversations about life. She helps me to see how bright and cheery the world is even though Cheryl is not in it. For that I will be forever grateful.

Carpe Diem.

When She Tries To Eat Her Fidget Beads

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When she tried to eat her fidget beads
I reacted not with excitement but love
When she poured her water in her lap
I came to her aid with love and caring
When she talks so soft I cannot hear
I ask her to use her outside voice
And yell with all her might

She replied I am.
I took her fidget beads with me today
I realized the meaning of out of sight, 
out of mind in her case totally
I got a towel to dry her pants and sleeve
I asked her if I could help her change clothes
No, she said. I did not push.
And I am learning to read lips.

Today she tried to eat her fidget beads
To her these resemble candy.
Touch is more important than being right
Gentle touch and just being

Help Me!

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This morning one of the residents who lives at the Harbor with Cheryl called for help with a deep longing in her voice. From deep inside her soul she longs for help. She does not know what that help is nor what she needs. She is mostly deaf so the aides trying to help and distract her are using their football stadium voices to communicate with her.

Another resident responds by asking about what help she needs. Her request is repeated by others. There is a deep longing for help. Cheryl is dozing off and on. Her request for help has become part of her dreaming.

They were getting organized for luncheon. The atmosphere left me with an overwhelming sense of disconnect and sadness.

Carpe Diem

Little Incremental Changes

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This morning I am thinking about the little incremental changes this disease of Parkinson caused in Cheryl. The trees in these pictures are maples and they are turning with the season. It is not apparent in the big picture as they show below but zoom in and each individual leaf has a tinge of red around the edge of the leaf. The green still remains in the core of the leaf. Little incremental changes as the leaf begins to shutdown for the season.

Tonight and on days since I started this essay, I am thinking about the little incremental changes this disease of Parkinson that has invaded the person I most want to be with, the person where I am home, has caused in me. Our green area is smaller. And yet at the same time it is still green.

It is my goal to talk to her on a level that is her. Sometimes her behavioral response to some situation can appear childish to me. It has only recently come to me that I must ignore that perception and talk to her as I once did. Almost every morning when I wake her she will ask, “Can we still get to church?” or “What time is church?” I used to respond with, “There is no church today.” Sometime in the past I decided that response was unhelpful. These days when she asks me about church I take that to mean, “What is on the agenda for today?” She has little memory of what we may have discussed doing on the previous evening when we went to bed.

Aphasia appears often. When she is telling a story it is very important to her to get the names dates and places correct, even if she is way off the mark. Her mother is no longer on this Earth nor is her sister Janice. Cheryl tells stories about them or visiting with them in the present tense. Once in awhile I might tell her that her mom is in heaven. She will respond, “Are you sure?” That question reminds me that it is unimportant to correct her perceptions. I have a difficult time resisting the natural male response of – bullshit that is not the way it is.

It appears to me – just observation – that although she can read, the words are mostly meaningless. It the morning over breakfast we look at the newspapers. For me that is the Wall Street Journal. For her that is the Cincinnati Enquirer. I have two observations; She does not recognize that they are two different papers. She is unable to comment on articles that she may be looking at in the paper. (I have asked.) The particular article might be about some city council fiasco. She will tell a story about Sr. Janet and what the newspaper tells Cheryl about her job with the parish office.

I know there is some green still left in the middle.

I am thinking about how it has changed my focus. I used to worry about how late she slept in the morning. The why of that worry always comes back to how much sleep I will get that night. Those two ideas are connected only in my mind. They are not connected in practice.

It changes my perspective. There is a bigger picture. Just like these trees on our property, when one zooms in one sees the differences in the leaves but when one zooms out one sees beauty.

It changes my interest. What can I do to enable her to reminisce even if her memory is weak? Perhaps I can aid her reminiscence. Comment about her stories to get her to tell me more.

It changes my observation of the universe. There is beauty everywhere you look. Cheryl is always telling me about the moon when we are driving somewhere. I look too. She can see the moon in the clouds. So can I if I look carefully and listen to where she says she sees it. A shape in the clouds looks to her like the moon. I long to see through her eyes.

Maybe I could read to her rather than watching her struggle to understand printed words.

Carpe Diem.

A Day that will Live in Infamy

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Looking back from the afternoon towards the morning I have to laugh a little.

Cheryl’s doctor is still adjusting her meds. Trying to sort out sleep issues, depression issues, hallucination issues, movement issues and other Parkinson dilemmas takes time. In the meantime sleep is illusive. Last night I got the message – quit taking the quetiapine for sleep. So I did not give her the quetiapine.

This morning I got the message, the doctor has communicated with the neuropharmacist and reviewed all the other stuff she is taking. Start giving her the quetiapine 75 mg for 5 days and then 100 mg from then on. The nurse practitioner will check back in two weeks to see how it all turned out.

That is counter intuitive. 75 mg is twice the original amount of quetiapine that she was taking. After I finished reading all that I went to check on Cheryl. She was awake as she had slept poorly but quiet enough that I slept like a stone or at least a stone with a two-teaspoon bladder capacity. Overnight I sensed that Cheryl was awake but she was not talking gibberish which happens sometimes when she dreams out loud. I fell asleep easily after getting up a couple times. (God, I hate old age.)

We decided on waffles and fruit for breakfast. She ate her pears and part of a waffle and disintegrated into a coughing nausea fit which caused her to quit eating anything else for awhile. As that died down a bit, my cousin-in-law called with a long explanation about why she was unable to participate in Pizza Tuesday tonight.

Linda told me a story about her upstairs neighbor’s incompetency, water leakage and associated repairs. I started to think my life was not so bad at least my building wasn’t falling down around me.

Cheryl decided that she wanted to lay back down for awhile. I helped her back to the bed room and the bed. I then returned to the kitchen to finish assembling a new pot of coffee and wait for the next activity. I turned on the kitchen tap and a tiny trickle came out.

When I had the kitchen remodeled a few years ago I opted for the super faucet that I only need to touch somewhere to make it come on. It was a $300 option but it was extremely handy over the years. It is a battery powered system and the problem that presented itself told me the batteries needed to be replaced. Alas! I found new batteries and did that. Still no water! I called the plumber. Micky listened and told me that they have had a couple failures but she was sure mine was still under warranty and would check to see how long to get parts and call me back.

I took my coffee pot to the sink in the utility room for water. The sink in the utility room was running very slowly. WTF? Did we have a water main break? I called the Greater Cincinnati Water Works generic hold number and the robot answer-er asked if I wanted to discuss my bill. No! I replied. and eventually was connected to queue manned by a single human. This is similar to going to the post office to buy stamps at the wrong time of day. While on hold i decided to go look for my Amazon package that the driver had beeped my door buzzer about earlier. The package was leaning on my front door which led me to look into the front lobby of our condo building. The front door was propped open by a plumber who was working on the new neighbor’s condo up stairs. I tapped on her door and grumped long and loud about turning off the water to the building without warning anyone. — Turn about is fair play; she grumped loud and long about someone stealing her ladder when she was moving in which did not happen. The painters thought it was theirs and realized their mistake and put it back in the incorrect spot.

Someone had mismarked the main water supply which comes into the building as the cutoff for the second floor condo not realizing what they were doing. Our new neighbor’s water shutoff valve was hiding behind the water heater. The plumber figured out where it was after we complained about the water being off. He got bad information from a resident that was not here. Who knew?

I later apologized to my neighbor about raising much ado about nothing.

In the meantime Cheryl’s head is off in lalaland.

Sleep would be a good thing for her.

It is Pizza Tuesday.

Carpe Diem.

A Quiet Monday

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My mother always hated Monday. Even after she was long retired from her working career she would refer to Monday as Bloody Monday. I never understood that attitude.

This Monday morning Cheryl is sleeping in the other room. Quiet after she had been up concerned about strange thoughts just before midnight. She was worried about when Jan and Nancy were going to pick her up. Jan has passed away. Her thoughts are often very jumbled up these days.

Yesterday evening she was very anxious about our nephew Mark and his girl friend Jill. This was brought on by us driving past the FedEx terminal near where we live and Cheryl asking about Max working at FedEx. I responded with the fact that Mark, our nephew, worked for FedEx. I asked if she meant him. She said yes, I think so. And this launched her into several hours of on and off conversation about him and his girlfriend Jill (I quit correcting her ideas) and birthdays and presents and on and on.

After awhile it is very hard to deal with random nonsensical conversation.

I convinced her we should practice her voice exercises. We shouted MAY, ME, MY, MOW, MOO for several minutes. And tried to make AH last for ten seconds. Parkies do not breathe deep. In Cheryl’s case she often has very little air behind her vocal chords.

We rounded out the evening by watching 60 Minutes on CBS and then the movie “80 for Brady” (for the 53rd time).

I am starting to wonder where she has gone in her mind. She has exhibited several unusual behaviors over the past couple weeks but I disregarded them to simple tiredness from her current PT schedule. Physically she seems to be moving worse so none of this seems to me to be helping her.

A few days ago she sat in the rocker in our living room and stared out the window at the bushes in the overgrown lot behind us for two and a half hours without moving. She did not speak during any of this time.

She puts together random collections of pieces of paper and photographs. Some of these I have taken out surreptitiously of her circulation and put them on my desk to look inside her mind. I think it may be scrambled but occasionally I find little gems.

These pictures of Dad were attached to one of Cheryl’s lists of stuff: Moeller; Dr. & Mrs. Fred Kraus; Jeane Krause; Mr & Mrs.; Barb Kalb; Find Barb’s Christmas card; when I find the list compare the list to current addresses for all; Lists <-> Krause, Torbeck, Driscoll, Weisgerber, Welch; Make a list – Cheryl Torbeck, Cheryl’s friends… None of this has anything to do with these pictures which were probably collected for my father’s funeral in 2007. I am glad I found them.

Maybe one day I can find her mind for her and give it back to her.

Carpe Diem.

Why

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Why do I feel like Cheryl has to try out restaurant restrooms like a small child who has been recently potty trained? Is it my imagination or the real feeling that she is has. She seems to ignore her bladder and her bowels until we get to somewhere that she may get trapped. She has no ability to think or plan ahead for toilet contingencies. And then at other times it is all she can think about.

Why?

Yesterday, the discussion was about some lesson plans and software development for the early computer program that she pioneered in the grade school our kids attended when they were small. We had come to a nearby park for a walk after dinner. She spoke of this as though it was on going. She had to get that organized.

On the way home from dinner in one of her favorite restaurants, there was a near disaster with urinary incontinence and no protection for it. This part of our life saddens me. She will not ask for help. She knows that she needs help but is either unable or unwilling or simply embarrassed to ask for it. When I offer unsolicited help she will become angry and anxious. I understand this completely and at the same time I do not understand it. An urgency in her head is organizing old birthday, Christmas and other greeting cards in her office. Taking a break from that for a bathroom break has no priority. Her “full” signal does not work correctly. By the time her body signals full to her brain, she is stuck because she forgot how difficult it is to get out of the chair. The bouncy motion she uses is not helpful. She will not ask for help.

Why

Tonight when we got to the restaurant she was looking around to see where a couple of our kids were. She thought that they were coming even though there was no mention of them coming or any communication of that sort. An idea jumped into her head from left field. In the afternoon lots and lots of left field thoughts appear. Why is this part of the plan?

Why?

Why in the afternoon? Or is it merely that I notice in the afternoon and it grates on me more after having dealt with her worsening dementia all day? Sometimes her memory is so short it is not unusual for her to forget the previous sentence. Where are we going? – can create great frustration in a caregiver (me) when repeated at two minute intervals throughout the day.

This essay started with me sitting in one of our favorite restaurants wondering if she would be able to get back through the ladies room door. As I now read what I wrote that day and think about where we are with this disease — we is an important part of those thoughts — my meditation drifts off into why do I think I know better? For that matter why do folks generally think that they have the solution to this dilemma or that conundrum and freely volunteer the solution? There is no answer to that last comment. I can, however, parse and control and limit my own contribution to living our best life with Parkinson.

Tomorrow we see a new doctor. Her calling and interest is palliative care with a chronic degenerative neurological disease. Cheryl’s movement disorder specialist suggested that she might be able to help. He also wrote scripts for PT, OT and speech therapy. She has been therapied by these people before. She lied to the PT folks last time when they asked if she tried the exercises that they gave her to do. I do not think her moderately cognitive impaired brain thought of it as lying. She thought about doing the exercises, that was enough.

For my part, I bought a caregiver call button from Amazon. My thought was that Cheryl could press her button if she really felt that I could help her – get up, find clothing, get socks, and a myriad of other small helps with which she is struggling (her mind says no she is not) but does not want to accept that she needs help with (see I did it again.) Her speech is so soft she cannot say loudly, “I need help” or I am not listening. With this doorbell she could press it when she needs help rather than me hovering around the bathroom door asking, “Are you doing okay?” She does have to keep the button with her. That is the next great solution to find.

Admittedly it seemed like such an attractive solution. Ugh!

Carpe Diem