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.
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.
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.
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.
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.
Late in the evening when I am able to sit quietly and think about where we are with this parkinson thing I start to realize how it is affecting me. I ponder and think about how it is affecting her. Self -doubt pursues me everywhere.
As Cheryl’s confusion and memory lost develop into her dementia, I wonder if she is aware of her disability. I wonder if she knows about what is going on around her. I wonder is if she is scared. I know it scares me. She has always been self reliant. She often resists help. She makes me feel intrusive and yet I know her mind is awash in confusion. (Do I actually know that? Is that a misconception?)
Yesterday we had lunch with our daughter and talked about their family’s planned trip to Florida. We talked about the logistics of getting six differing schedules aligned for a family vacation. I thought it might be nice to go to there with them. I held Cheryl’s hand and asked her if she would like to do that. She was reluctant but interested in visiting with other family. (If we went along would we be a burden to Anna’s family and their time off vacationing together?)
My daughter pointed out to me that I keep track of Cheryl’s health like a hawk. She asked if I was keeping track of my own health. I think I am. But when I drift into deep discernment, meditation, prayer and thought, I am unsure. I think back to times when Cheryl and I went off together somewhere sometimes for a week or so, sometimes with friends we met up with, sometimes for a weekend alone with just us to entertain each other. Once Cheryl planned a special surprise for my birthday, all the kids and grandkids showed up – it was a well kept secret. These are all wonderful memories and it makes me long for those times. I makes me attracted to the idea of vacationing.
I think Anna was trying to tell me that a vacation would be good. I agree with that thought and in this part of my life and our marriage it would be useful if I was able to get away from the day to day care for Cheryl. Maybe it is time to give that away and return to simply being a husband.
A vacation from caring seems attractive.
As I write this and think about that aspect it lifts my heart. Worry and anxiety are easier to bear if there is occasional relief. I think I need to work on that sort of relief.
It is late in the morning now and she is gently snoring in the bedroom. This is one of those days when the day just seems to be slipping away. I begin to worry that she may not sleep tonight. I wonder how a professional caregiver would respond. I talked to her earlier when I put her meds in the bathroom for later. As I sat on the edge of the bed and comforted her a bit she fell asleep, so, I got up and left her to rest some more.
I am not surprised that she is sleeping late. Although she did not disturb me overnight I think she slept fitfully. I slept my normal get up to go to the bathroom every 2-3 hours. Occasionally she was whispering a list of people out loud as she thought through the planning of a family reunion style gathering that our sister-in-law has taken over but Cheryl cannot let go of in her mind. No amount of “Tari is handling that” relieves her from thinking about logistics. I often hope that Tari will spontaneously call and talk about it but I recognize that she probably will not. (I sent her a text message and requested her to call Cheryl. I will wait and see if she does.)
I mentioned – return to simply being a husband. I big part of that idea is not doing Cheryl’s things for her.
Many things wander through my thoughts as I checked on Cheryl again and got cleaned up, brushed my teeth (now the coffee tastes funny) and put on clothes for the day. I can hear my mother’s voice as she told me years ago, “I do some of my best sleeping in the morning.” When Mom was still alive if I visited her before noon, she might be just barely awake. Once or twice I made her breakfast and sat with her for awhile. I start seeing that happen with my wife. (I suppose I do not want that for us. I want us to be young and vibrant or, at least, think we are.)
I know that she wants to go to church services tonight. It is just before Easter. Easter is a big deal for Cheryl. She has been talking about coloring eggs for several weeks. I have extra eggs in case I cannot get out of doing that. It is getting late, so, as a husband I will get her up and listen to the complaint while I do that.
She is up now at 11 AM. I made her favorite breakfast of scrambled eggs and bacon with grape jelly toast. She told me that after she was done with breakfast she wanted to lie down again.
Adjunct_Wizard 