Love and Life

Today Cheryl took my Breath Away

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Allison is a wonderful young woman who has been cutting and styling Cheryl’s hair for some time. She had been operating out of a salon on the second floor of a business front in our old neighborhood for some time. Many years ago when Cheryl had foot surgery I asked her if she could come to our house and do Cheryl’s hair while she was stuck in a chair waiting for her foot to heal. Allison said of course she could. She had several clients that she took care of at their house.

Cheryl visited her in the salon for a couple years after her foot healed but eventually it became too much – the stairs. I asked Allison if she would visit us on a regular basis and a new relationship of service started.

As Allison was getting ready to leave and I handed her a check she said let’s set up a date for here next hair visit. I got out the calendar of all knowledge and we looked at August dates. Weeks-wise the next date would be August 23rd but that date interfered with something for her son Paulo. She suggested either August 30th or September 1st. I picked August 30th.

August 30 is the anniversary of the day we met. It was August thirtieth of 1966. It was a blue moon. Cheryl remembers that. I would to report to you that I remember it succinctly but I would be lying or at least making up stories about my youth. She remembers that it was a full moon. That fact caused me to look up astrological data to find out it was a blue moon. It is a blue moon this year too. I told Allison the story of our meeting.

After Allison left Cheryl talked about her death, something that every human is able to imagine. Cheryl said to me, “She is such a nice young woman. She didn’t mention that I won’t be here then.”

I replied, “What do you mean by that?”

She said, “I will be dead by then.”

I sat down to have a conversation but I was too dumbstruck to speak for a minute. I wanted to know where that thought had come from. She did not have an answer but she was adamant about it. “I’ll be here in spirit”, she said. (Wow. I thought.)

I don’t know what to make of that idea that she has or had for that moment in time this morning. What I do know is that I will be more alert to her needs for the next few weeks.

Carpe – blue moon – Diem.

81 Miles to Home

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In my former life as a teacher of control topics I had the students set up an electronic timer to reach its goal at 10 seconds and 30 seconds to teach the point when you are waiting 10 seconds to is a long time and 30 seconds is “forever “.

From my view in the back seat the miles to go display is not fast enough. What is it about progress displays that make us wish them to go faster? The electronic timer had no display. It also taught patience.

61 miles now. Urgency is calling me. We are close to home and I can feel stability and familiarity drawing me in. It was a great beach trip.

Black hat
Us beaching
Early morning beach
Setup
Patience almost done

Carpe patience Diem.

Bittersweet

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THOUGHT FOR TODAY: The bitterest tears shed over graves are for words left unsaid and deeds left undone. -Harriet Beecher Stowe

This TFT came via Anu Arg’s newsletter to me this morning and when I read it two thoughts occurred to me. The first observation is yes but more importantly talk to the people you care most about and listen to them. The second observation is that I have been getting Anu’s newsletter since he started it in college about 1994-ish. Long ago and several email servers back. He and I share a love of words and their meaning both old and new. Today’s word is chirk. An old one that means cheerfulness. (Such a contrast to the TFT)

The Last Day

Today is our last day at the beach in Florida. Is it bittersweet? Tomorrow morning we will return home to our regular daily life (sweet). Am I reluctant to leave this Florida beach (bitter)? No I am not. It was/is however a nice change of pace.

Florida is hot. The humid air sticks to you like Luke Skywalker does to Mark Hamel. Fine white sand is everywhere. Tile floors although easy to maintain feel like a NHL practice rink just before the Zamboni comes out to a parkie unsteady on her feet. Those are a couple of the nuances that did not dissuade us from taking the opportunity to come here with Anna’s family. The experience was sweet. Going home will be sweet as well. No bitterness here.

Cheryl made it through all of the little inconveniences that come with being away from home and slightly off schedule for several days. Her schedule is very different from the rest of us and especially me. I suppose that I should be more cognizant of that but I am not. I am always hopeful that her disease interlaced with dementia will cure itself and we can move on with our life, run around and travel, drink fine wine, keep a schedule, make love again, just simply be. And that makes me forget where she is and where we are. Alas.

Red flag day

There is only sweetness coming when we get home. This vacation adventure with our daughter’s family has been hard on Cheryl but she does not seem to know it. She only knows that I am angry when she is doing something different than I am trying to get her to do. The page I have here about Dementia alludes to a lot of those little daily frustrations that I have observed. I should read it more often. Daily, perhaps?

… talk to the people you care most about and listen to them. Even when they are suffering with dementia and memory loss, she is still in there. Thanks, Anu. I often forget about that. The bitter can overwhelm the sweetness.

Carpe Diem.

Make a List

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Cheryl makes many lists. Early on when she was still working and Parkinson was not a friend, she made TODO lists for work, school activities and whatever was coming. These days with Sam’s disease (Samuel Parkinson) such a big part of our lives making a list is more nuanced. The next day one must remember what the list is about.

In May two of the grandchildren marked significant events in their education. One matriculated from university and will begin contriting to the business world after this family vacation. And one graduated from high school and has her sights set on university in the fall. Cheryl made a list to mark both events. We were only able to attend one of the graduations but both celebrations. The list worked but I had to remind her what her notes meant.

Vacation view

In another part of the family, preparation is happening for a family reunion style gathering with no funeral attached. Cheryl wants to be very involved although her organizational skills are mostly gone. Her head however is jumbled with ideas.

“I need to make a list!”, says she.

“Try to relax and enjoy the beach.”, he replied.

“I will after I make a list.”

Sam this disease of yours is so much more than we had hoped for in our lives. (sarcasm)

CARPE DIEM (dammit)

Baseball Hotdogs and Humidity

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Tonight it is the Blue Wahoos of Pensacola versus the Biscuits of Montgomery Alabama. Pensacola has a minor league baseball team and both Max and Eric are huge baseball fans so we thought it would be fun to go. Tickets were found and we are off. A trip to the pro shop netted a really fine Florida baseball hat.

Real Florida

The team colors are navy and gray. The Biscuits have almost the same colors which makes it a bit confusing from the stands.

Whoopadiddee

It was a great time although Cheryl ran out of gas at the bottom of the seventh inning with the score tied 3 all.

Carpe Diem.

Longing

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Last night when I came to bed Cheryl was still awake. I asked like I always do if all was well. She replied that yes she was okay. She said, “I was thinking about Mom.”

“What were you you thinking?”, I asked.

” I miss talking to her.”

It was an incredibly lucid moment of which there are fewer and fewer. We talked for a bit about our mothers. She missed Elaine in that moment but she was not sad. She was thoughtful. Elaine is very present to her. Most days Cheryl wants to call her and tell her about what is going on. When we go somewhere, Cheryl wants to make sure someone is attending to her mom’s needs.

Day Three

I suppose that time for relaxation and thinking and memories of her childhood and past good times bubble up in her thoughts when she lets go of control for a bit. Last night was one of those. She was not upset. If anything she was relaxed and pleasantly fatigued from the day’s activities.

Lately I have been giving her a chance to talk about her thoughts as she goes to bed. If I read for awhile before coming to bed and she is still awake I encourage her to tell me what she is thinking about. Sometimes many anxieties are jumbled up in her head. Sometimes, like last night, she is thinking pleasant thoughts. Sometimes she longs for Auld Angsine. (Sp?)

The crabcakes were good and it was breezy on the pier. The shore birds where grabbing any of the small bait fish that they could find.

Today is a new day.

Carpe Diem.

Heart and Hater

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This morning after I finished my old people chair yoga and relaxed for a bit in the morning quiet with the daily Wordle, I found that four of the five letters were contained in my search for vowel words. Those four letters led me to guess heart which contains all the letters but in the wrong order. The correct answer is hater.

It stuck me as sad that hater is an anagram of heart. These are two very different emotions.

In other news stories over the weekend a gentleman expressed chagrin at the failure of smaller local newspapers. His point was that lack of local fourth estate oversight allows corruption to creep into local government and institutions. The national news organizations will fill the gap but never tell the local story. National issues, although real, affect little in our local lives but tend to polarize our conversation. There is support for this in my home town of Cincinnati.

Indeed the last of the local newspapers, the Enquirer, is a sort of ghost paper. It is part of the USA Today paper equivalent of cable news. The sports section is often more pages than the rest of the paper. Whether it it is causation or merely correlation is probably unknown without more study. Nevertheless three city council folks fell prey to the lure of really fine campaign donations by developers vying for attention. It is sad really. And no doubt these folks thought that they were helping the community. No local news hounds were asking those embarrassing questions that make public figures think about issues in a different light.

Heart versus hater.

The combination of Parkinson and Lewey body dementia some times combines to embarrass Cheryl in the most private of ways. I hate the diseases and what has been taken from her. My heart goes out to her and wishes to save her from any embarrassing moments. Often I fail. No amount of planning for contingencies can prevent every disaster. Incontinence issues can be a disaster or a merely a learning experience. I can be a disease hater and take heart as I help her through it. I have learned to not hate myself for missing things that in retrospect seem obvious should have been planned for things. React and respond.

As Cheryl often reminds me, it’s an adventure. It is! I can hope that she will give me a hint that she needs extra help sometimes but I realize that it is not part of her persona to do so. She was raised to not be a burden and no amount for talking from me will convince her that to me she is not burden. I gave her my heart almost sixty years ago and she is still very private. I feel intrusive when I help her probably because I do it without her permission. I can not stand to watch her struggle. We are too close. I am too much in love with her to do otherwise. Occasionally it causes conflict.

I often write Carpe Diem.  More importantly seize every opportunity to learn and grow.

Our little trip to Florida provides many of those. It is an adventure. It is an opportunity to grow. It swells your heart. I feel any hateful feelings for the disease dissipate for now.

Onward. Carpe Diem.

While Driving and Talking

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Last evening as we drove to our granddaughter’s high school graduation it became apparent to me that although Cheryl knew who I was she did not really know who I am. She started talking about events in the past that we had done or children and grandchildren, sometimes mixing those together. Her discussion might start out as Paul and I did this or Paul and I did that or Paul told me etc. It makes one wonder about the complexity of the human mind.

In one of these conversations, an incredibly lucid one, she said to me that she thought her Parkinson disease was getting worse. (AHA) She went on to say that her memory was very bad at times. I just took a deep breath and let her continue. She explained that she was having a harder and harder time remembering names and relationships (she said “who they belong to”) and that thought bothered her. Throughout the rest of the evening at the graduation ceremony, pictures in the courtyard outside the high school and on the way home, this failure to remember names and relationships was forefront on her mind.

This information is very important to Cheryl. Embarrassment or shyness keeps her from merely asking, “who are you?” I told her that she can always ask me who the other people are and I would tell if I knew. I am not shy. I merely say, I’m sorry I’ve lost your name in my head.

Most times these drive along conversations fall into the category of prattle and I can respond with, ugh-huh or yes that is probably true or I don’t know about that but, yesterday evening it was more serious than that. Last night it affected her sleep as she began to worry about how everyone fits together. She could not find those relationships in her head to her satisfaction. She spent the three hours from eleven PM to two AM speaking to herself in a low voice and fidgeting with her hands. Fidgeting often accompanies her discussions with herself as well as others.

There was a lot of hugging and reassurance that I would always help. She on the other hand is aware of her memories dissipating into the ether and it scares her.

Indeed, her disease is getting worse.

Living in the present is all that is left when one cannot plan ahead nor remember past experiences. Disappointment was rampant in our drive along yesterday. Regan’s graduation ceremony, however, was well orchestrated. She is on to the next thing. (Smartphones take really crappy long photos but here is some from the ceremony.)

Carpe Diem

Changes are So Slow

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Today as I encouraged Cheryl to wake up and get out of bed it occurs to me that the changes are very slow. This morning is very different. It is hard to recover from a night of little or no sleep.

Yesterday she was awake very early simply because she had not slept overnight. I was not awake overnight to observe her but I get up two or three times to use the toilet. I long for the days when my bladder could contain my overnight urine output until morning but alas those days are gone. (I have digressed.) Each time I made this trip she was awake and talking to me. As I attempted to fall asleep, she squirmed as she attempted sleep. Each time I woke up she was in a different position. It suffices to say she slept little overnight.

Yesterday she was delusional and hallucinal and those experiences went to talking to her mother, my mother, seeing our two sons around, seeing her deceased sister and our smallest grandchild, Zachary.

Yesterday evening was my regularly scheduled meeting with friends. We formed a stock club many years ago and we enjoy a few beers and talk about various get-rich-quick schemes as well as attempting to discover the next Walmart or Amazon. It is a satisfying evening for me and our son Scott comes over to hang with Mom for a couple hours.

We had a gift for our newest high school graduate so I enticed our son David to stop by and pick it up. As I was texting David and working out the details Cheryl wondered aloud if Scott was bringing Zachary with him. I texted Scott with that request.

Our daughter-in-law brought Zachary over after he had been fed at home. Scott came at the usual time to hang for awhile. And David came by for a few minutes to pick up the gift and chat with Cheryl for a few minutes. I left for my meeting.

She saw them all in reality instead of inside her head.

Afterward she went to bed and although she was awake when I returned from turning off the lights and reading for a bit she fell asleep shortly thereafter.

Today she really had a hard time getting started. I rolled her, she has a new transfer chair, to breakfast after getting her on and back off of the toilet. She ate scrammed eggs, toast, bacon and some orange juice. She has started reading the Wall Street Journal to which I subscribe. (Getting rich quick is still strong in me.) She likes the editorial pages. I rolled her back to the bedroom afterward and now I hear her moving around selecting her clothes for today.

Carpe Diem.

It is Strange

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Yesterday I looked at my notebook and realized I had written little in my journal for several days. I pondered the fact that things seem to smooth out for a bit. Usually it is a long enough bit that one can be lulled into the idea that things are changing. Things are changing for the better.

And then,

Stuff that lost your attention falls in the dumpster.

Last night after Cheryl’s previous night of reasonably good sleep stayed awake all night.

Today will be a long one. She will be tired all day. So will I.

Carpe Diem, dammit!