exercise

Hurry, Haste

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What is your hurry?

I ask myself that question several times per day. What is your hurry?

My encouragement to myself is “what is your hurry?” At this stage of my life the answer is I do not know. (IDK)

I do know that when I close my eyes in the sunny shade of these woods and empty my mind as best I can, and then I open my eyes again the evergreens are a brilliant color with a deeper blue. Why is that? IDK. I have hurried through life without looking.

Why did I pick this trail for today’s activity? A day ago I wrote that I am not a child anymore and I am not youthful but I still see a world of wonder with youthful eyes. I remember long ago when Cheryl and I came here we hiked this trail more quickly than I do today. I am not in a hurry. Maybe that memory brought me up the cliff face. IDK. Today I stopped often to rest but also to look, think, remember and read and listen while I read.

I selected several books to bring with me on this retreat and personal retrospective. I selected first “So long and Thanks for the Fish” by Douglas Adams. I have read a couple of the others from the Hitchhiker’s Guide to the Galaxy trilogy. There are five books altogether and the theme is cynicism and simultaneous mediocrity as we splash through life. Wonko the Sane explained why he became a hermit – “The sign read: hold stick near the center of its length. Moisten pointed end in mouth. Insert in tooth space blunt end next to gum. Use gentle in-out motion. It seemed to me,  he said, that any society that had so far lost its head to put such a detailed set of instructions on a package of toothpicks, was no longer a civilization that I could live in and stay sane.” We have a lot of things like that going on. “Caution HOT!” is printed on the side of the McDonald’s coffee cup.  I always think, “I hope so.” Why are warning signs like this posted? I passed several today on railings erected along the trail. The other side of the rail was a sheer drop. “DANGER No Entrance ” is printed on the sign.  IDK. I did not hurry through the small volume. Several times walking today I found myself reading on a convenient log or outcrop of rock.


Why did I select this book to read first? IDK but it has been many years since I read the Hitchhiker’s Guide to the Galaxy and the absurdity of the story line is compelling. Maybe it is time to review my life and start anew. Maybe I long for the next great thing. IDK. There is no hurry.

There will be time to take time for wonder. There is no hurry.

Carpe Diem.

What a Days I Have Been In.

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Yesterday we tripped to a couple wineries to enjoy a bottle and some snacks. Today we saw waterfalls.

Don’t go chasing waterfalls, please stick to the rivers and the lakes that you are used to. I know that you want to have it your way or nothing at all but you are moving too fast. – TLC

This song often pops up in my head. It has a good cadence for bike riding and as a result it is on my playlist from Spotify. It has a metaphorical meaning that I interpret as look around and understand where you are before you dash off looking for something better. Another phrase is – the grass is always greener on the other side of the fence. Maybe it is maybe it is not. I suppose that we always want the thing that we do not have. We want what the other guy has rather than merely celebrating with him that he has it and enjoying what we have.

When I would take mom to dinner at a restaurant which has not happened for some time, she would ask me what I was having. This a different form of the same thing. Why would Mom want to be interested in what I was about to order from the menu if she did not believe in some way that it was going to be better than what she was intending to select for herself? Is there something I am missing here? Once I protested telling her what I was thinking about having and made that argument to her. She responded with – I might want to change and get what you are getting. That is a reasonable response.(After we ordered and the food came, often she would take her fork and get a bite of my whatever it was. I loved Mom but that always annoyed me.)

We all have had experiences like this. We all have a fear of missing out (FOMO). We are not missing out on anything. We may be unsure of our decision but that specificity does not imply that the particular decision that we have made for ourselves is the wrong one. That cannot be known or understood until it has been executed. The decision may morph into a learning experience. That is a good thing.

These days as I wonder what purpose this portion of my life is for, thinking about and pondering big changes to my life, I look for the waterfalls.

In the background while I am doing the day-to-day activities of life, various chores, duties near to and necessary for the little part time job I have with a local community college, I think about making larger changes in my situation. Cheryl was all of my day before she moved to memory care. She was a huge part of my day when she moved and had full time care not from me. Now that she is gone there is a vast empty time.

I have thought about continuing with volunteer work or activities of some sort at the memory care facility where she had been. I just do not think I can do that. The memories are too raw. My heart sinks when I think about it. I feel that I am letting them (the patients there) down. I do not know where that feeling comes from within me.

For now, I have filled it partially with bike trips. These trips of 12 or 15 miles at a stretch let me get much needed exercise. They provide solace and distraction. It is easier to imagine the times when she was not sick.

This week I am filling my time with visiting with my sister. We have a commonality in that she became a widow a few months before I became a widower. We support each other in that respect. She was not expecting to lose her husband and I was not expecting to lose Cheryl. Even though it was right in front of me I refused to believe Cheryl would be gone. I have come to grips with that now. (I still do not like it but there it is.) I notice myself talking about Cheryl and trips we made. It is easier as time continues.

Where do I go from here? Should I look for a new waterfall? The pool below the fall is close to the ground but still agitated. Often the stream below is swift moving. When the water joins the river it is moving slower and calmer.

Carpe Diem.

Today Too day Two day

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I got up earlier than usual, although not that much earlier. I did not sleep well. I have little idea why that I did not sleep well. Often I wonder why that is or why other things are. There often is no answer to; Why?

Small children ask this of their parents. My parents are both gone so I have no one bigger or more elder to me to ask, “Why?”.

Y is also the second to last letter in the English alphabet. Z, the last letter, is often used in graphic novels and comic strips to indicate that the character is sleeping. Why comes just before Sleep. Sleep is how Jesus refers to Lazarus in that story in the Bible.

Yesterday I visited with my son. We sat in the sunshine in his backyard enjoying some time together. My daughter-in-law is off on a trip with her mother visiting a new niece. They currently live in Spain so that child will eventually ask, “por qué ?​” (thank goodness for Google translate.)

This morning as I sat and watched the CBS morning news with little interest, I noticed my neighbor Pat walking to and fro past my window as she worked on her garden in the rear of our property. Why am I watching this show which has failed to capture my interest on this beautiful sunny day in Ohio? Perhaps I should get up and get my bike out. Why not? I have this wonderful neck brace on my neck. Why should that stop me from doing something that I truly enjoy. Perhaps I can go on a short ride before I go to visit Cheryl today.

Why not? I am done sleeping. Perhaps it is time for a little extracurricular activity.

Carpe Diem!

It is Quite a Task

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It is a task to watch her struggle to walk. She will not ask for assistance or help. One has to brave the storm and help anyway. To me as her principal helper, it is frustrating.

We went to the physical therapist and the occupational therapist today. I suppose I was hoping for some magical solution to Cheryl’s interest and attitude towards exercise. I suppose I was hoping for a story end like the tale of Lazarus. (“Rise up and walk!”)

He suggested to her that she practice by taking big steps and for exercise stomp down on the floor to emphasize a marching motion. He suggested that she practice getting out of and into a chair– nose over toes. Bend forward to stand up. Bend forward and stick your butt out to sit. When you are up – grab your walker. Practice this often and muscle memory will kick in. When we were home she complained of pain in her back. Her core is weak.

He politely suggested that I should coach her to put her feet in the right place and lean forward to stand up. Her has no idea how much friction that coaching causes. (You are always telling me what to do!) I do tell her to lean forward and stand up. I usually put my hand on her back to help her and steady her as she rises. She leans on me pretty hard. She might say stop pushing but if I remove my hand I find that she was leaning hard backward on me and she can easily stumble back and lose her balance. I ignore her complaint mostly and apologize later when I am sure she is stable.

I learned an important nuance today from Justin the physical therapy guy. He had never met Cheryl before so part of the visit was him looking through her records and asking various questions about this and that. He asked about falls. Everyone new asks about falls. I replied that Cheryl falls a couple times a week. She usually falls backwards and it seems to me that it is getting worse. She tends to lean backwards when getting up from a chair. If she passes by a stable solid piece of furniture that she has grabbed for extra support she hold onto that as long as possible even to the point of leaning backwards to maintain contact. Justin told me that is pretty typical for folks with balance issues. (Huh. I was under the misguided illusion that parkies tend to hunch forward. Cheryl never hunches forward.)

I know that there is no magical solution. But I can hope.

Just like I can hope her voice will get stronger with speech therapy.

Just like I can hope for the occupational therapist to be useful to her.

The palliative care clinic is focused on improving her sleep. Part of that is controlling her constipation. If she sleeps well she does better during the day. She can remember who I am for example. She will remember to eat. Perhaps she will quit losing weight.

There is no cure for this debilitating and degenerative disease.

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

Walks on the Beach and other Memories

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Our selfie

When the children were small we began a tradition of making a trip to Myrtle Beach about once each year. The company that I worked for at the time used a pair of common vacation weeks which always landed at the end of July and the first week of August.

The company paid us salaried folks every four weeks called a period. The vacation weeks were the middle two weeks of the eighth period of the year. There were thirteen periods in a year and every few years a week was added to the thirteenth period to correct alignment with a normal calendar year. The Roman’s and later on the Pope would have been proud of Cincinnati Milacron.

Every year for 15 years or so our family went on vacation in the hottest part of the Ohio summer. Since my father worked for Milacron the memories of this vacation time goes back to childhood.

Cheryl liked to hike and walk. Not being an especially athletic person she substituted hiking and walking for any other athletic endeavor. At Myrtle Beach we would get up early hike the empty beach. It is where I first saw the green flash that occurs when the sun comes up over the ocean.

On other vacations over the years hiking was a big motivator. In every state park or national park or area that we stopped in walking and hiking was a major part of the experience. Maps were collected upon arrival and put to good use during the stay. In one Kentucky park our hike was about ten miles. It is without a doubt the thing I miss most with the onslaught of Parkinson. Her struggle to walk freely and move easily is disheartening. It was in many ways our main entertainment.

Conversation, discussion, debate, points won, points lost were all accompanied by a satisfyingly long walk. I think I miss those more than I can easily express.

Today my daughter and her husband took a long walk down the beach together. I was envious.

The hat

This time at the beach I am pushing her here and there. There are special wheelchairs for the beach and they are free. There is good ice cream across the road. I pushed her there too.

Carpe Diem.

Tan Shoes with Pink Shoelaces

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Cheryl was moving slowly this morning but she said yes when I asked if she wanted to go to exercise class. I asked her if she wanted her blue shoes. She said, no, I want the pink shoes.

An old do-wop song jumped into my head.

It is amazing the crap flying around in your brain. I wonder how that works.

In Cheryl’s case it does not work as well as it once did. Her memories are jumbled up. She remembers that our granddaughter Laurencia is about to be graduated from The Ohio State University but mixes that memory with her mother’s teaching career. I used to correct the story but I no longer do.

Our granddaughter Regan is finishing high school and will move on to attend Ohio University at the end of this month. That idea is jumbled up with our grandson Max who graduated last year and is going to Miami University. When Cheryl tells the story we have three graduates. One of whom has been teaching for a couple years.

She wore her pink shoes with gray shoelaces, a flowered shirt and man oh man…

Carpe Diem

Seated Cardio Classes

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Cheryl really enjoys these classes when I can get her moving quickly enough to get there. Joelle leads a cardio (seated) that involves a lot of dance moves (shoop, shoop) and alternately boxing moves in time to the music.

Unfortunately I had the sound off when I made this video the other day. The rest of the staff joined in as background dancers.

Parkinson Community Fitness – check it out if you are in Cincinnati, Ohio.

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.

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.