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.
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.
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.
One of our regular social gatherings is Pizza Tuesday. (Yes, I know it is supposed to be taco Tuesday.) Most times it is just a few of us, maybe 3 or 4. Occasionally Cheryl’s brothers and sister show up. Last evening in a moment of serendipity her cousin and many of his family showed up to celebrate their father’s birthday. Cheryl got a hug from her cousin that she really has not talked to for years.
Bob’s second wife died about a year ago and I took her to the funeral mass. We did not stay for the gathering after because Cheryl was not doing well that day.
Cheryl did not talk much to Bob. For one thing he was there to celebrate with his family in the big front room. For another although he may know of Cheryl’s on going battle with parkinson and dementia, he may not know how long it takes for her to get a thought out. Sometimes her thought is gone before she can vocalize it. I have been watching this for years. At home I merely wait.
Others have a hard time waiting so they want to guess what she is trying to say. Forming thoughts and then assembling complete sentences, keeping track of any names that need insertion is a hard task for Cheryl these days. I only help when I am very sure of who or what she is talking about and even then I can be wrong. Parkies can change topics in a heartbeat.
Last evening, however, was special and when we got home she wanted to do two things. Get Bob’s telephone number so she could call him and talk. And sit outside for awhile and watch the clouds go by to expose the moon and the planets. Venus is very bright and the moon is several days past its crescent phase. Watching the night sky lately seems peaceful for her.
I asked her siblings for Bob’s phone number. She now has his phone number for when she wants to call him.
As we left the restaurant her brother, as he often does, said to me thank you for taking care of my sister. My inner thought to him is I love her dearly and we made a vow to each other fifty years ago. What I say to him is “you’re welcome” and that bothers me sometimes. Some day I will pour my heart out to him. He is a good and kind man.
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.
In a discussion last evening about bread knives with my daughter, I admired the bread knife that I bought her for some occasion in the past after discovering that she did not have a large knife for slicing the bread I had made for it. The knife that I have and use at home is a knife that has been around since my childhood. I do not really know the detailed story but Mom and Dad had this knife in their kitchens through life and they used it to slice breads and cakes.
As a child I always thought of it as “The Knife”. It is not the knife I used as a child of six years or so to slice open the back of my left index finger. The Knife was made by Federal Cutlery Co. N. Y. That is stamped into the side of the blade. The handle however looks to be my father’s handiwork. He made a couple pieces of wrought iron furniture when he was in Hughes high school. It would not surprise me if he had repaired this knife at Hughes and kept it for my Mom. Or found it somewhere in New York when they lived there shortly after the war. I was a toddler then. I do not know the story. I should have asked when Dad was still alive.
It does not cut as well it once did. Perhaps it never really cut that well but because Dad had repaired the handle and injected his love into it, it had never been let go. That is where my discussion with Anna went as I was admiring her knife and how smoothly it sliced the Irish Soda bread I had made. Perhaps it was time to let “The Knife” go?
Maybe if Dad was still alive he would tell me he did not really like how the handle do-over turned out but Mom really liked it. Dad was always trying to find the right gift for Mom. This was especially true on her birthday and Christmas. I went shopping with him a couple times. Looking back, he had a mechanical man’s sense of what would be the perfect gift but he loved her dearly.
The Knife will still be in the knife drawer but underneath the new bread knife I ordered identical to the one Anna has. The Knife and I have history together.
There are other things such as these that I have let go or am working on letting go. Some are physical, some are attitudes, some are worries.
Adjunct_Wizard 