My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
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.
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.
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.
Cheryl and I have come to Florida rarely. My brother who was several years older than me chased his job to Florida in the 1970’s. We had been to visit with him and his family three times in all those years. The last time was not even a year before he passed from the Earth.
There are times when I think about Bill. Occasionally I hear his voice when I talk but occasionally I hear my father’s voice also. We came from the same germ so that’s bound to happen. Dad’s intonation and cadence is in our speech.
This place is in the panhandle almost Alabama part of Florida. Driving around today using up time before we could claim our condo for ourselves I noticed how busy this place is. It seems many are packing as many experiences as possible into the week that they have here.
The water seems to be a different color than the Atlantic coast around Myrtle Beach where we took the kids for many years. I could be wrong about that. It has been many years since we have been there. Memories fade over time.
The pine trees in southern Alabama look to be same species as those in South Carolina and Georgia.
Cheryl seems very tired. It is understandable. It has been a long ride for her and me. The view is very different from our veranda. It is certainly not Ohio.
The surf is very loud.
Cheryl seems concerned that she is not attending to some things that need attention. She is unclear about what those things are. I have assured her many times over that I have made sure that nothing will be missed because of this trip.
If she sleeps well tonight it will be great on the morrow.
Cheryl slept pretty good last night. One of my many anxieties about this vacation trip is how well she will sleep at night. In retrospect it is a constant concern. Like everyone she is much better health and attitude wise with a good night’s rest. Parkinson merely makes that harder to achieve with regularity. Stopped overnight in Cullman Alabama she seemed to sleep okay. We snuggled for a bit until she was asleep or seemed so to me. I moved quietly to the other bed afterward.
Buckee Hat
This morning I was up at 6 AM but we are on CDT now. Cheryl awakened at 7 AM. I helped her toilet and get cleaned up and change clothes. I thanked the Almighty for the smooth start to the day. We rolled down to the breakfast area to se what we could find. I found scrambled eggs, toast and bacon for Cheryl. Her favorite these days and as she started to eat and proceeded to have a coughing fit, I cursed the Almighty for interfering with Cheryl’s need for sustenance. That was a joke of sorts but lately when she eats breakfast she suffers through a coughing fit until the phlegm drool gets down her throat and her esophagus gets its act together and she can swallow okay again. She eventually settled down and drank a little green tea.
Day two of the trip is off and running. Google says that if we do not stop we will be on the beach at 2PM. And in the shameless advertising of places to stop, LaQuinta in Cullman has executive suites- their term- that are pretty nice if you are traveling with a less than ideal mobility person.
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.
Cheryl is sleeping very late today. This she has done before and it concerns me that she will not sleep tonight. For now though, I will try to be in the moment and think of all the good things going on about us. I will push away the anxiety of the future events.
If she should wish to go to bed at a time later than me tonight, so be it.
Recently a longtime high school friend came to town to experience a grandchild’s graduation from high school. Cheryl and I met Paul and Kathy for lunch. It was a great visit with no particular direction to the lunchtime conversation. Just a chance to catch up.
At the end Cheryl needed the restroom. And for awhile we talked about Cheryl, her disease and where we were in life. Paul asked how I was doing. He was sincere and so was I when I replied that I was okay.
They are very good friends. They both listen. They do not offer unsolicited advice.
Listening is the most important quality in a friend.
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.)
This morning after Tony Decouple told us that they were following news of what could become news later today, I turned him off. Perhaps in the future Ronald and Donald will fight it out in the abortion war staged for prime time but how will that solve the debt crisis? A cacophony of unimportant drivel assails one’s ears on the commercial news broadcasts.
Social media is no more informative.
“That is ….. on so many different levels” – How does one interpret that omment? Tony knowingly nods his head and Nate agrees. Buy this thing through our Deals and keep miscellaneous stuff from falling in the crack between the console and the seat. Try not getting it out while the car is moving at fifty miles an hour. Why is there a crack? Remember bench seats? Romantic.
As humans we interpret what we hear against our education and prior knowledge. What is important to us may not be important to others. Unless we can construct a way to make it important to others.
Guns are bad. Guns are good. Mental health is bad. Mental health is good. Take this drug and remove fat. Take this drug to make type two diabetes to go away. Take this drug to combat the effects of taking that drug. Take this drug and be stronger, stiffer and last longer; this one is not advertised. Men just know about it. Take this drug and live nine months longer even though you will die anyway. There is a thought. We are all going to die. No one gets out of here alive.
Bent carrot disease has a patron. His name is Peyronie. Cancer has Hodgkin. Dementia has both Lewey and Alzheimer. Movement has Parkinson.
It is going to warm up to 80 degrees today but tomorrow it going to be much colder, only 72 degrees. Much colder is a modifier I probably would not have used but Tara, the weather interpreter, has to be heard above the other unimportant noise. Why have television stations devoted so much money and technology to something that is essentially a PowerPoint presentation?
I wonder how many people change their drive to work based on the traffic report? That used to come via a reporter in a helicopter who was barely able to talk over the top of the engine noise and the wop-wop of the blades. The internet has made so many things safer. No more flying in the fog. I am so glad Al invented the internet.
What does it all mean? A fusillade of information unimportant for living daily life bombards us all day long.
Adjunct_Wizard 