My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
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.
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.
I am either becoming used to the odd late night behaviors and reacting to them in a calm sane fashion or they are simply unremarkable to me and seem commonplace.
At the very least I should be thankful to the Almighty that we are in a place that does not drive me to my blog to write about and discern my own feelings and emotions.
At various points in our lives I imagine many of us feel this way. As summer approaches it is time to slow down and enjoy the world’s awakening.
One grand daughter is graduated from university and is on a long awaited tour of England, France and Italy. Cheryl’s sister is off to Italy with her gentleman friend Gene. Another grand daughter graduates from high school in a few days. Our daughter’s family is enjoying their new boat on this bright sunny May Sunday afternoon. Cheryl’s brother is on his boat. He posted a picture this morning on Facebook.
Cheryl seemed to have slept well. I made her current favorite breakfast of scrambled eggs and bacon with grape jelly toast. She seems to be getting up later as time goes on.
Today we will take a walk somewhere in the sunshine.
Many years ago I had the privilege of working with my father at a company that manufactured machine tools. Dad and I worked very little together but on one project we found ourselves in many design meetings essentially working for a guy Dad did not particularly like. I could tell that by how my father held himself occasionally while in the meeting this gentleman was talking about various ideas. When I asked my father about it he said that you always have to listen to the other guy even if you think he is a jerk because it is possible that he might have a good idea.
That thought has helped me through many uncomfortable conversations where I might have rejected the other’s opinion or thought simply out of hand because he rubbed me the wrong way.
I could have rejected my Dad’s lesson but I decided to keep it for my own.
Yesterday (a few days ago actually) was Easter Sunday. Like many families we gathered to celebrate it and simply be together.
Grandpa made a ham and all the kids showed up with food and drinks to provide sustenance.
All of the grandchildren, save one, are teenagers or older anxious to get onto their lives. As I looked around the room and watched Cheryl light up and become mom for awhile I wondered who they would all turn out to be.
The oldest soon to be graduated from the university will remain in the same city. After having accepted a position with a business consulting firm there, apartment hunting is the main concern. Frugality seems the overriding criteria although location is also important. There is a gap between starting the new job and commencement at the university so there is time for vacation with family and trips with friends before starting the new career. This time of life is exciting. It was for me. I can understand a little about how this grandchild is feeling. She was such a cute little one growing up. We have many great memories of her. I pray she will do well in life.
Her younger brother is in his first year of university. It is the transition year. He is looking for himself. He is attending classes at the same school that I was graduated from 50 years ago. The fact that he is attending my old school probably influences how I think about him. He will do fine in life if he becomes aware of other’s needs. He is attentive to his grandmother. I remind him when I get the chance to take classes in topics that he may be interested in. He is actually a pretty good family storyteller. He found some old videos from his family’s younger years and strung them together in a competent narrative. I suggested journalism might help with his nascent storytelling talent.
Behind him in age is a younger sister who after becoming an early reader and chocoholic like me, flashed by him in high school math classes. She ran through the math available at her high school and takes college level classes. She has learned to fly and is interested in attending the Air Force Academy in Colorado. Her mother wants her to have a backup plan if she does not get into the academy but I think her heart is set on Colorado. She is so young. Her entire life stretching before her. She is a wonderful dancer and a part of her high school’s competition dance team. She will accomplish her goals.
The baby sister in that same family is clever and crafty. She is a child that has been and is always interested in many things both arts and crafts. She has her own workroom in the basement of their house were she can pursue her interests without disturbance. She plays in her high school band and seems to love it. Just a few months from driving age and the freedom that driving yourself to activities and friend’s houses, she too has limitless horizons in front of her.
Her cousin is an avid swimmer and swims with his high school swim team. He is ahead of his younger sibling by eleven years in life. Their relationship is special. At grandma’s house he often sits quietly somewhere with his earbuds in, futzing with some game on his phone. Like many kids his age (and his Dad) he is an avid gamer. He does not isolate himself though, if you address him directly he responds. He has a couple more years until he needs to think about university or other. I hope he gets his driving license soon. I could hire him to take me places. He is a good student and will do well.
His tiny brother is eleven solar circuits behind him. His happy face lights up the room and makes my heart smile. Grandma got down on the floor to help with the marble track. Oh, to be young again.
Another grandson and the oldest of his family group is still searching for himself. He has come to the conclusion that driving pizzas for a living, although okay for now, is not a career goal. He is a wonderful photographer with a high skill for composition that I think he should pursue. But I am grandpa. I am not a counselor. He is still searching for his dream.
The only one of the grandchildren missing is his sister. She graduates from high school next month and has her sights set on a university in southern Ohio. She is president of her high school class, an avid volleyball player and has her sights set on bigger things. She will do well in life.
It was a wonderful visit and I hope a good time was had by all.
There is a sameness to our daily life with this disappointing disease of Sam Parkinson. On many of these days I am saddened by the fact that he described it but was unable to say, “Aha! Here is a cure.” Early on few have been able to describe all of the other features of the disease. From my perspective, preparation is a big part of success in future endeavors. All of these kids I have described know this. Some learned it early, some learned it later but all of them recognize preparation is important. I want to be prepared for what the future brings Cheryl and me. So many aspects of Parkinson disease are unknown. Every day is new. Every day is the same. Easter, however, was special. Most were here.
That is a math concept that is lost on many people. It is lost on engineers who should be good at math.
Many years ago I was given the opportunity to teach a very basic math refresher style math class in a for profit community college setting. It was very interesting to me as I have an engineering background and my math abilities are strong. I began to think deeply about “Why is this easy for me and hard for these students?” I used that as a mantra when I was trying to explain and help them through the class. My other duties where chief GED instructor. There I discovered that if you can read well, all else is easy (maybe not exactly easy but at least attainable with time).
This was an eye opening experience. One of the forks in my life journey was accept a job in industry or continue my education and teach on the university level. I chose industry and never looked back but teaching these couple classes as an adjunct wizard taught me much about myself and what is important.
When I started these thoughts on Sunday, I wrote that Sunday for me is a time for reflection. It is not the only time.
Thinking about the future of things while making the bed up and doing other needed chores for today — Qué será, será – Whatever will be, will be – an old Doris Day tune popped into my head. It made me smile. Was Elaine floating around today? Doris was a contemporary of Elaine’s in high school. Cheryl seems to sense her mother today. She has mentioned her a couple times in the present tense. This evening she asked if we could go visit her mom tomorrow. We will. She seems to know her mom is deceased. I did not remind her of that fact. Perhaps we will go visit her grave tomorrow and then find some lunch.
I wonder if I have planned well enough for our future. Whatever that may be. (Man plans, God laughs.)
Perhaps another meeting with the children is in order. I should make an agenda so that I do not forget anything.
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.
Adjunct_Wizard 