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.
One can always learn new things if you open your heart to the experience.
Recently we met with a dementia specialist. It was not intended on my part to be one on one but as it turned out it was. She had several key points to deescalate frustration and anger. Like many things that happen these days with Cheryl and me, I often forget which people and services I have investigated before. Theresa Youngstrom is a nurse and a dementia specialist. In a previous post I quoted these points from her website.
This company wants me to buy a device that pretty much tells me I am not dead yet. I already know that. I run to the store and run to the library and run to the doctor fairly often. I am pretty sure I am still running okay and not dead.
Many people, probably most, spend a great deal of time running here and there. It is ingrained in us. We chide each other if we are not active. But instead of running what if we took a deep breath and stopped to look around at God’s wonder of Spring and the renewal of life. It happens every year. It is truly amazing.
Breathe and notice the world. Run for exercise and health but do it outside where He can show you His wonder.
Wouldn’t it be great if there is a manual for living? Wouldn’t it be great if there is a book that tells one how to do everything. Wouldn’t it be great if there is book that tells one what to do different when something goes wrong? It would be like an appliance troubleshooting page in the operator manual.
But life is not like that. It would be great if it was but it is not. I am ecstatic when I find one of these charts because any problem I have is rarely on the chart.
In my working career I occasionally helped to create charts like these for industrial machinery but there is no such manual or chart for life. There are however lots of pious platitudes. Social media platforms are full of them.
This last one with the turtle has become my mantra of a sort. Forward is forward. Progress is progress. With chronic degenerative disease one can maintain hope for a cure, that being said, it can be more useful to accept the situation and play the hand that was dealt to you. (My very own platitude.) Forward is forward.
Stephan T. Patsis is a favorite cartoonist. His signature work, “Pearls Before Swine” is the cartoon in the comic section of the local newspaper that I read first when my wife hands me the funnies and says, “There are some funny funnies today.”
You have to choose to be happy. The goat who is somewhat intellectual and thought provoking tells rat. An absolutely true statement from a smart goat. One does choose to be happy and no one else can make that choice for you.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy. – Desiderata by Max Hermann
The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!” To which LAJ responded… “I thought it was going to be about a caregiver who thought their husband didn’t like them anymore, […]
As Sue thought, I thought this was going to be about the care giver. It is not. It broke my heart. I have watched Cheryl struggle with opening many things. And I heard Parkyboy talking in the background.
Mavis is here building the apple pie – as I wrote on Friday. This is the end result. We took it to Anna’s house for Easter dinner. The pie dish is now in the dishwasher. All is well.
Cheryl told me today that we should get a deep dish pie pan for Mavis for her birthday.
This particular pan came from my mother’s house, so, it has some history. It also has a recipe for quiche that I think I want to try. Quiche is pie with a different flavor, savory rather than sweet.
Pardon the apple pie shrapnel
Quiche Lorraine: 1 C. shredded Swiss cheese, 1/2 lb. bacon fried and crumbled (I interpreted 1/2 16 as 1/2 lb.), 2 C. half and half or milk, 4 eggs, 1/8 teaspoon red or white pepper, 1/2 tsp. salt, 1/3 C. minced onion, 1/4 tsp. sugar. Preheat the oven to 425° F and prep pastry. Sprinkle cheese, bacon and onion in pie plate. Beat eggs & blend in the remaining ingredients. Pour cream and egg mixture into the dish. Bake for 15 minutes, reduce heat to 300° F, bake 25 to 30 minutes until a knife inserted comes out clean. Let stand for ten minutes before serving in wedges.
It is so easy to creep into denial mode when caring for a loved one with a chronic disease. The care activity takes so much of the the daily activity that one can feel guilty about merely sitting and reading a book.
I read books a lot. It is the major consumption of my time the other major part of the pie being a care partner to my wife.
It is rare that I will ask for any help. When others ask how am I? or How are we doing? I deny the fact that on some days we are swirling around the drain. Maybe because on other days life is swell. I merely reply, we are fine.
After all not everyone needs to know and who needs that comment, “You are so blessed.”
The previous post was self serving but I would like to have my old life back. I would like to have my young body back too. That is not going to happen anymore so wishful and wistful thoughts are not going to be helpful to looking ahead. Let me face forward and move on.
As hard as it is I want to try a new tactic. Much of my anxiety about Cheryl is fear for her failure and subsequent embarrassment. I project that on her. She is not concerned. She is talking about apple pie again. Today we bought more apples and she chopped them up to make an apple pie for Easter dinner.
Last night or perhaps the night before her confused head decided that she should call her sister Deb and chat her up about making an apple pie for the Easter gathering. As time moves on she seems more and more confused about what and when and who. I have explained that we are going to our daughter’s house for Easter dinner. Somehow that gets converted into Nancy and Jan and Deb.
Nevertheless I asked my daughter-in-law Mavis to come and help Cheryl finish the pie. She readily agreed.
The one who I could tease a little. The person who when I would toss a teasing barb at her would toss it right back and then some. Fifty plus years of marriage let you do that to each other. We had some great times. We had a lot of fun times. We always wish that the kids will have as great a time and Cheryl and I had along the way. We were never rich financially but there was always enough to make it work out. We were and are rich spiritually, socially, romantically and personally. I suppose that is what makes her mental state so disturbing and frustrating to me in this part of our life.
I can go back and forth, staying present and grieving what is lost to us. As I think of these things and reminisce I think of the song, “As Time Goes By.” There is a British TV show of the same name with Judi Dench and Geoffrey Palmer. It was one of our favorites. We rarely sit for long enough to watch any TV show. Any plot line makes little sense to her so she loses interest and gets up to go organize her office. It is her form of something called punding which is a useless and senseless activity that many in her situation do.
Cheryl was the one who was super organized. She kept the check book. She paid the bills. She was hawkish about getting and keeping and filing receipts for groceries and gas and any other expenses. She preferred to pay cash for stuff. If you did not have the cash in your hand, you did not buy it. When the kids were small we went to the grocery once a month and filled the larder. When it was gone you had to wait for it to come around again. There were some exceptions of course for milk and eggs and bread but generally you had to wait. The kids learned to be frugal. They were allowed to pick their own special things for school lunch and they learned how to make it last. Even when the children moved out to have their own lives we still shopped mostly once a month.
Cheryl knew how to use a screwdriver and still does but somethings that were second nature to her are now befuddling. How to open and what to do with an email. She once put all the family information into an Access database to print addresses for birthday cards, Christmas cards and anniversary cards. She knew how to drive that simple data system. She was used to putting together other databases and accounting systems for the clients she and others had in their small computer services company. It is hard now for her to wake up Microsoft Word to write a letter these days.
She was the one who did most of the household chores. I do that now and I do not mind doing it but she would if she could stand up long enough to do the laundry, make the bed, cook dinner, bake a cake or pie or simply vacuum the carpet.
Both her motor control and mental agility are greatly diminished and she is aware of those diminished abilities and it frustrates her.
She is the one who loved to hike. My favorite memory of this is a ten mile hike we once took in March many years ago. We hiked around a lake in a Kentucky State park. It was an eight mile loop and a two mile hike to the trailhead and back. We surprised some badge earning boy scouts about five miles from no where as we sat for a bit to enjoy the view and soak up the unusually warm March sunshine that day. It is a wonderful memory. We slept well that night.
She wants her old self back too. Who wouldn’t? Her sister passed way in the pandemic. Her sister also had Parkinson’s disease. Jan had other things going on that kept her from surviving the Covid wave in 2020. She still sees and talks to Jan. Tonight she sent her a text message. Tonight she does not understand that Jan will not answer but I might be the one who is wrong about that. Jan might answer. She often does – answer Cheryl when Cheryl talks to her.
Cheryl saw Jan at the table when we sat down for dinner tonight. I have no doubt that Jan was real to her. We discussed it. She decided to send her sister a message.
It is a powerful thing to see how strongly she was certain Jan would answer. It was moving to me. She went into her office to partake in a zoom meeting with some friends. She gave me her phone to hold in case Jan would call back or return her text above. These things sometimes break my heart. I try to keep them inside.
There is still time for new memories. I am sure of that. None of us knows when we are leaving this Earth. The best thing we can do is look for the good things, look for the humor in today’s situation. It is, however, difficult on some days.
An update after I published this about an hour ago. She came back from her Zoom meeting and remarked that she had not been out this late for a while. She wondered aloud how she would get home. I smiled and said that is the magic of Zoom, you are home. I gave her a tour of the condo.
What gets people even total strangers to talk to each other? And what gets them to talk about intimate subjects?
The other day I was in our local IGA waiting for the deli guy to get finished with an earlier customer and I noticed that I was not next I was three from next. A woman came in behind me pulled number 20 out of the number dispenser and looked disgustedly at 16 displayed on the Now Serving display. She seemed in a hurry. It was lunch time and people working nearby often come in to pickup something for lunch. I pegged her for one of those people. I traded numbers with her. I told her she seemed in a hurry and I was going to do some other shopping while I was waiting for my number to come up.
I walked around the fresh fruits and vegetable area near the deli while waiting for 20 to get close. I got the other items I needed in that part of the store and found myself waiting while 18 was displayed as Now Serving. She initiated the conversation. I was only going to get cheese. I replied me too. I told her that I needed some Hoffman’s American cheese because I had planned on making macaroni and cheese. It had to be Hoffman sliced american cheese because in the past our daughter had related a story to Cheryl about our grandson Max telling his mom how he liked grandma’s macaroni and cheese better because grandma used special cheese. And why couldn’t she get some of grandma’s cheese to make macaroni and cheese with?
At our house we now call Hoffman’s cheese “Grandma’s cheese.”
She laughed and offered to give back 19 because she too was going to buy some Hoffman’s cheese. I replied no, that is okay I have plenty of time. I am retired. She told me that she was retired also and that she had worked in administration for Maple Knoll retirement community. She went on to tell me that she had cancer and was in treatment. So far, it was working. Her cancer was in remission.
I asked her if she knew Lynette Petersen, our friend that had recently passed away had worked as the executive chef at Maple Knoll. She had been retired from Maple Knoll for a few years. Number 19 had probably left Maple Knoll shortly after Lynette started there. She said the name was familiar but she did not work with her.
We exchanged other pleasantries and discussed other cheeses and how it seemed that Boars Head was taking over the deli case. She was not satisfied with Boars Head and I agreed.
But what would make her want to tell me about her cancer? That seemed a left turn in the conversation about retirement and its features. That seemed to me to be intimate information that one might not want to pass along to a total stranger. I was an empathetic face because I exchanged tickets with her?
Perhaps I was a friendly face and my kindness persuaded her to tell me about her current crisis.
I was an ear so she could expose her anxiety and worry without consequence and without concern about getting perhaps unwanted and unsolicited advise from family or a close associate. At that moment I was a help to her.
Adjunct_Wizard 