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.
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.
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.
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.)
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.
Birthdays are a big deal to some. Not so much to others. Cheryl got several cards from friends through the mail.
This vase of flowers magically appeared on Cheryl’s birthday with Natalie when she came to clean. Her sister Nancy had sent flowers for her birthday and Natalie selected them.
In the evening we went to a little cafe nearby to celebrate Cheryl’s birthday with our daughter, granddaughter and her brother. As I was putting Cheryl’s walker out of the aisle in the crowded little restaurant, a woman seated by herself remarked that I was a good husband. She had watched me guide Cheryl into the booth near the window. I told her that I try to take care of Cheryl as best as I can. She told me her husband had passed away a few years previous and she missed him greatly.
When I paid our tab for dinner I paid for her dinner also.
Today is Cheryl’s birthday. She is not sure how old she is and that is a good thing in many aspects. When I remind her, her answer is, “Really?”
Tonight we will go to dinner to celebrate. It was a spontaneous decision on my part. Some of her family will come too. With parkie’s many decisions are spontaneous. One has to determine how the day is going.
Her sister Nancy sent her some spontaneous flowers. Our niece, Natalie, brought them with her when she came to clean our condo today.
Spontaneity is the spice of life and living in the moment is something we all need to do more often.
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.
Like many old retired folks we have a Medicare advantage plan. When I investigated these a few years age I came to the conclusion that the United Healthcare plans offered through AARP seemed to be appropriate for our needs. There have been several adjustments and realignments over the past several years and I am not in any way an insurance expert but so far the system has worked for us. United Healthcare has a feature that sends a nurse practitioner once a year to visit to check their clients if they want to participate. Participation is voluntary. Cynical me wonders what benefit the insurance company receives from visiting it clients but practical me says there is some benefit otherwise they would have no reason to pay a skilled NP to drive around the countryside to visit clients. There is no altruism in corporate america. I agreed to a visit by Whitney on Thursday of this week.
UHC Housecalls (Whitney) came to visit that day. We went through all the medications that Cheryl takes for Parkinson and my few meds for high cholesterol and too much eyeball pressure. There is a modified MOCA test – draw a clock, remember three words while drawing the clock. The normal blood pressure, heart rate and lung listening happens as in any wellness visit. There is also a clip on gadget and an app that runs on Whitney’s laptop that produces circulation information. Good news we are both alive! And one of us could remember the three words.
In addition to Whitney coming to visit, so did Nancy, a friend of Cheryl’s from church. In fact Cheryl has had a different someone come to visit every day this week. It has been busy and that tires her out.
Cheryl was showing signs of exhaustion on Wednesday. In the evening about 11:30 pm she needed to go home. I was heartbroken that night and tired myself from the time change. The impostor (Capgras) delusion seems to appear about once every two weeks. I put her in the car and drove her around the block. I am usually terrified that this time it will not work. This night it did (still).
Today it was hard but busy. Writing this on Thursday, I wrote that I forgot her pills at 1 pm. Damn. That will mess up her mobility and her mind. Later on Thursday I noted — it is almost 8 PM and I think she is back to her normal for now.
Cheryl could not complete the modified MOCA test on Thursday. Today, Friday, she went to lunch with her friend Barb. The week of visits, no matter how well intentioned, is over.
Tonight we went out to get dinner at one of our favorite little restaurants. St. Patrick’s Day pub crawls where in full swing on Friday night. [Éirinn go Brách] The food was good and the crowd was raucous and loud. St. Pat showed up on the second day of March madness.