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.
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.
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.
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.
For the past couple days Cheryl’s watch has been missing. It is THE WATCH. As a routine each night we place the watch on what I call the little hat. It is actually a little ring holder that was given to her by Anna. She put her rings and her watch on it but a little more that a year ago I purchased for her a gold chain to wear her rings as a necklace. She had lost enough weight in her hands that her rings would fall off in the car or a chair or the restaurant. This last was the scariest.
But I have digressed. –THE WATCH – has been missing since at least Wednesday. Kathy came to visit on Wednesday. I first noticed that her watch was missing in action when I made dinner and Cheryl and I sat down to eat it. She is right handed so she wears her watch on her left wrist. I noticed it was not on her wrist but I did not say anything because sometimes she does not wear it. Later when we went to bed I noticed that it was not on the little hat. For a couple days I would surreptitiously search for THE WATCH.
About noon today as she was preparing to take a shower and I was searching, I found her watch. She often puts rubber bands on collections of random items in her office. Her watch was on a book shelf in her office near some items that had been banded together. My heart leaped for joy. (I have not been following my own rule of looking around her office to see where things might be.)
Lately, however, I have become anxious about Cheryl’s mental health. The watch story is not about that, it seems to me to be slowly worsening as time goes on. And I think that I am getting used to it. (That idea makes me anxious and adds a fear of not recognizing changes immediately.) My daily notes about bedtimes, falls and other behavior are no longer daily. I note falls and other anomalies. Bedtimes are between 9:30 and 10:30 typically. Her impostor delusion (a noted behavior) seems to appear if she is up later than 11 PM and disappears into her office to “work on stuff.” Last night was one of those nights. I drove her around a four mile loop in the rain as she anxiously gripped her purse waiting to get home.
She was okay with me helping to change her clothes and get into bed when we got back. She wished me farewell and safe driving home. I left the bed room and open and closed a few doors as though I was leaving. I took off my jeans and sweatshirt that I had put on over my pajamas to make the drive. I turned off the lights and gently eased into our bedroom as her husband coming to bed. It worked. I worry that one time it will not work. So far my fear is unfounded but I still worry because I do not have another plan except for sleeping in the living area on the pull out sofa-bed.
At one time in the past I asked her if she remembered any of that. I learned that a reminder in the morning of odd behavior is unwarranted and perhaps even stupid. Introspection of failed ideas is useful.
I still wonder (and worry) about her failing memory and confusion and general mental heath. And of course how to pay for it all should she need extra care that I am unable to give her. Maybe I need some counseling? Or something to ease my mind? Engineers spend too much time what-iffing the situation.
On the morning news the U.S. Congress spent much of the taxpayer’s dollars annoying the CEO of TikTok. That social media platform gets more time per average viewer that Facebook and Twitter. Alas when will we discover the unimportance of Facebook and other social media? … except as another form of 1960’s TV.
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 