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.
About 6 or 7 o’clock in the evening is prime anxiety time for me. I start to carefully assess Cheryl and look for things for us to do together to use up the evening. I spend too much time obsessing about what might come. I could wait and see instead of obsess and fret.
Last evening after Cheryl’s rough day I started to think this way again. As I wrote the paragraph above I thought to myself – you know what? – que sera sera, dude! Foohhget about it! Let’s just see where this all goes.
Later we went to bed like normal. I read for awhile. She was still awake when I came to bed. I helped her roll over. Ultimately she fell asleep.
Huh?
We got through it.
Perhaps it is time for me to let God do his thing.
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.
Cheryl was interested (it seemed to me) in going to bed at the normal time about 10 PM. I helped her through all the normal changes and toileting. Afterward I sat up to read but could not wrap my head around the story I was reading. I came to bed at 11 PM.
After I laid down and got comfortable she started talking to someone. I thought at first she was talking to me but listening I realized she was having a conversation with whom – several people – she was seeing in her head. She has had these episodes in the past but not for some time. Last night and early morning her hallucinations were strong. At least three people were in the room – Nancy and a couple of smaller children and Zachary. They talked about church topics. They talked about playing. they talked about what was best to eat. They talked about books and stories. They talked about breakfast.
After an hour or so of this I got up. I must have gotten used to her murmurings and fallen asleep for awhile but I awakened at a little after 1 AM and could not return to blissful slumber. I got up and pulled the sofa-bed apart with the intention of sleeping in the living room for a couple hours but that did not work out as I heard her moving around shortly after I got up to switch rooms.
When I reentered the bed room she was perched on the edge of the bed trying to get up in her hop-hop mode. I helped her up and she needed to put her imaginary earrings on the dresser in our bedroom.
I suggested to her sleepy, dreamy, hallucinatory self that she sit on the toilet while we were up and she did that. I changed her overnight incontinence stuff and while I was doing that she saw imaginary wetness on the floor as well as several imaginary insects moving about. We captured the imaginary insects after getting off the toilet and searched for more. Afterward she announced that she wanted scrambled eggs and ham. I sadly reported that we were out of ham and I would have to go to the store the next day and fix that but I could do scrambled eggs and toast. She was okay with that modification.
I made her scrambled eggs at 2 AM.
After she ate we returned to bed. I did not hear the living room clock strike three but that may have been because I stopped its pendulum while I was laying on the sofa-bed earlier next to it counting the ticks and the tocks.
It is 10 AM and she is still sleeping and I am wondering how long to let her sleep. We plan to meet one of her friends for lunch today at 12:30 or so. And what should I offer her for breakfast. This day is starting out very hard for Cheryl and very slowly.
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.
What Rose Forgot is a novel by Nevada Barr. Rose, the main character, is struggling with mental illness and memory loss brought on by some unseemly characters in her family. Her granddaughter helps her through the dilemma that she finds herself in. But one line early in the novel stuck out – memories fell into her head like random boulders from a bucket high up all jumbled with no relationship to each other.
Cheryl’s conversation, especially in the evening, is much like that. Kathy came to visit her today and I noticed that her conversation and memories are like that during the day also. Kathy ignored any incongruities if she knew they where there. Had I been sitting near Cheryl I would have had to correct her memory of people and events. It is really, really difficult for me to not jump in to the conversation to fix things.
But I am getting better at it.
I am not certain that I got the quote right but the image is there. Random chunks of memory come into Cheryl’s head. It makes me sad. Sometimes she realizes that this is happening.
Tonight when we came back from getting ice cream at our favorite ice cream store, she went off looking for her Mom in our condo. I did not stop her or correct her impression. And, to her, perhaps, Elaine was there.
I am in pursuit of her calmness of mind. And I admit it makes me anxious.
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.
As I loaded the dishwasher I thought of David our middle child. He and Melissa are not feeling well.
I thought about Anna as I started to write this. Perhaps I will call her later.
I sent a text to Scott and Mavis and asked about a do-over of our unsatisfactory Cracker Barrel experience. We were compensated by the manager with 4 free meals. Scott invited us for dinner instead. I volunteered dessert. It will be Cheryl’s favorite – pound cake. I cleverly ordered two box mixes when I ordered online from the Kroger near us. I rarely order from Kroger but I did the other day for pick up on Saturday.
Cheryl was worried about organizing an Easter party last night. She thinks Easter is tomorrow or next week. No matter how much I reassure her that it is not for a couple weeks yet she is worried about candy and small children and hard boiling eggs. I convinced her to sleep a little and we could do that in the morning. (I had hoped she would forget her anxiety.)
This morning as she was putting on clothes she made reference to those thoughts. I texted her sister Nancy since Nancy was part of Cheryl’s thoughts. Nancy came to visit for awhile. They talked for an hour or so.
Often on the weekend this road of Parkinson is disturbing for me. The dementia aspect of Cheryl’s Parkinson is disturbing for me. I wonder if there is a class or something I can do to feel more comfortable with helping her.
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.
This writing prompt magically appeared from Word Press. What makes me the most anxious is the fact that some new symptom or behavior will appear with Cheryl’s Parkinson and I will not be able to help her. Coupled with that fear is the anxiety that little techniques that I have developed so far will quit working. And lastly I will have to give in to the fact that I can no longer care for her myself.
Adjunct_Wizard 