We are home now and I have been thinking about it all. it was a great trip. Are there things I could have planned better? You betcha but we adapted and got through it all.
A few things that I would do differently…
And before I left I updated the Linux Gnome interface and for the first time in a year or so turned that computer completely off. Gnome is broken. That computer operates like an old DEC PDP 11. I have a project to keep me busy for awhile.
Carpe Diem.
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)
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.
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.
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.
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)
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.
The team colors are navy and gray. The Biscuits have almost the same colors which makes it a bit confusing from the stands.
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.
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.
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.
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.
Interestingly to me anyway yesterday’s plan works today. I suppose that overtime I will come to understand that what I want her to do and the speed I want her to do it are not hers so it can never be.
Today’s class is sitting cardiovascular motions. I features the Beatles and the Righteous Brothers as accompaniment. Nice.
Carpe Diem.
We play more scrabble these days.
Back in the pre-Parkinson’s days, Cheryl was a computer database wizard (witch?) or at least the guru for several companies that her consulting company serviced as clients. She spent a lot of time on her computer. Even in retirement she kept it up with church and other groups providing email news and other communications.
We play more scrabble these days as I try to pry her out of her office and away from her computer which has become more frustrating and confusing to her. Her other go-to game is bridge but that is hard to do with merely two players and her cognitive function failing. So, we have been playing scrabble more often. I offer it as an enticement to get her away from her computer. Many times it works. I hate scrabble.
She was (is) a good scrabble player. A good scrabble player does not worry so much about the words as the score. A good scrabble player is always hunting around for a word that goes into the corner for the TRIPLE WORD SCORE. A good scrabble player is always plopping a word on the double word score preferably one with a Z or Q in it.
I am a lousy scrabble player. I am always looking for the longest word I can make. The more pedantic the better it is. If a player asks – what does that mean? – or challenges its meaning, I am vindicated. Cheryl often beats me, maybe always beats me. I love her. I hate scrabble.
Her computer is becoming more confusing and the frustration has kept her from sleeping. Over time I have contacted some of the organisations that she was doing things for and suggested that they relieve some of the burden on her. It takes her more time and she worried about missing her own perceived deadline. It kept her from sleeping as she got anxious (a good scrabble word) about what she may have forgotten to do. The people she works with have relieved her commitment without grief. They understand her disease and how it screws with her head and her need to stay involved.
So I try to get her to play Scrabble more often. Last evening my lousy play was winning. I was ahead by 40 points at one point. I felt a bit guilty because she was struggling mentally and getting tired. But my lead kept shrinking. Was this a ploy? (one of my words) At the end she was ahead by two points but had many points left on the shelf. Aha! I had some too but fewer. I did the math.
She still beat me by 1 point. I hate scrabble but love her. She still has the killer gamesmanship in her.
Maybe we will try something that I can win at but on second thought that is not the point for me. I hate scrabble. I am not competitive.
Is there an online bridge group for parkies? Google search coming.
Adjunct_Wizard 