Cheryl was going through a bit of confusion as I put dinner on the table. She kept getting up to look for her deceased sister Janice. (She called her Janice instead of “Jan.”) Eventually she was satisfied that Jan was not here to eat with us. She became interested in food and ate what I had cooked. (Chicken, noodles, green beans and broccoli)
I had put some music on the radio to play quietly while we were eating. Jimmy Buffet and “Margaritaville” came on when we were finished with the meal. I asked her if she wanted to dance. She said yes. We did.
For a few minutes we were young at a dance with Jimmy Buffet. Our dancing these days is more of a swaying-in-place but it is fun anyway.
We had a wonderful dinner with friends last evening. This gathering had been put off three times for various reasons but yesterday we got together. Gary showed off his wine aerator when he was pouring the wine. He told me he cannot tell the difference. His palate is older than mine and I had gin and tonic. Perhaps he was sold a bill of goods by an aerator salesman.
Everyone contributes when we have these dinners. My job was bread. Yesterday after several false starts I got two loaves of italian (my version of italian) together. They were remarkably good so I should perhaps I will note in my notebook of cooking disasters what went wrong and what I did to recover.
Today Cheryl is very tired. She refuses to admit it. I suppose I am tired also. We did not stay out late but we did sit up and watched a PBS show to unwind a bit when we got home.
We had french toast made from the second (leftover) loaf of bread from last night. It was good again. I am very thankful that I do not have celiac disease. One reason to not be grumpy today.
Cheryl spent some time cleaning the kitchen after she had her french toast with blueberries breakfast. All the time I was worried about her. I think I am anxious for her because the last few times she has fallen, it has happened in the kitchen. This time however she moved a lot of things around and wiped counters; swiffered the floor; threw the kitchen tablecloth into the washer along with the clean one she got out to replace it with (both will be clean in soon); and then became tired and uninterested. She took her ten o’clock meds and went to lay down for a bit. When she awakened, she announced, “Today is my birthday!”.
It is not and stupid me pointed out that it is May the fourth. I thought about – may the fourth be with you – but left that unsaid. She responded with, I wish people would stop changing the dates or some other angry anxious comment. I backed off quickly. I apologized to her and pointed out that her birthday was next week on the tenth of May but tonight we should go somewhere and celebrate her birthday.
She became calm and sat down to watch the gabfest on the View. I brought her a coke and set about putting the kitchen back together. I discovered that she had thrown the tablecloth from the table in with the folded one from the drawer into the washer and I did not catch that before tossing a bunch more towels in on top. (Damnation. I became immediately grumpy.)
I sat down to write this little story and laugh at myself. I do not want to be grumpy today.
She actually slept pretty well and later today we will probably get out and take a walk in the park. And celebrate her birthday. There is nothing to be grumpy about. We had dinner with friends last evening. It was good company and good conversation.
There is absolutely nothing that goes fast in our life anymore. Do I miss it? My immediate reaction is NOT.
I like how the young people emphasize comments by using ALL CAPS. That enables their fast comments about most anything that strikes them.
FAST however is gone from our life with Parkinson. Planning and thoughtfulness and SLOW are the current buzz words in our life.
I have noticed as I get older (I am Old) and drive my wife with PD to various exercise or other social activities that many drivers – not necessarily young drivers – move through traffic fast. What is their hurry?
Even when I am feeling as though I am late for something, I ponder what will be the result if I am later than I expected to the destination – mass, restaurant, exercise, whatever. The end result is similar to removing one’s arm from a bucket of water.
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 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.
When engineers look for a solution to some dilemma, they often spend a lot of time observing the problem.
Many thoughts can arise. Many questions seek answering. But ultimately the dilemma is slowly broken down to component problems and individual solutions to small problems are sought out. An engineering education teaches this process. An engineering education does not teach solutions for Parkinson’s disease and related issues. Those are discovered along the way.
“There’s someone hanging upside down in the trees in back”, she told me. There is a scrub tree growing in the weedy lot behind our condo. It has a crotch near the ground and branches into to smaller trunks as it grows toward the light. The bark is a light color almost khaki in color. To Cheryl it looks like a kid standing on their head. Perception is off a bit and her creative brain describes a different interpretation.
In that moment she pushed me into interpreting things and objects differently. Are painters able to do this spontaneously? Are story tellers able to imagine a different reality? Are engineers stuck with what they see and touch with little imaginative creation? It intrigues me, the imagination and story telling part. I have often thought that if I could get into her head I could help but maybe I would merely be steering her toward my reality and away from hers.
There are many changes that I notice in her behavior. She can easily ramp up an anxiety about indigestion. It is not apparent to me what specific foods cause distress. Milk products and foods high in milk and sugar seem to give her a hard time. Tomato sauces and beef with a high fat content also distress her stomach. The engineer says figure that out and do not eat those. (Easy Peasey) The average time to relief is an hour to an hour and a half.
I have not discovered any silver lining in these stomach episodes. It is challenging to distract her from focusing on how her stomach feels although occasionally I can get her to sip lemon ginger tea which settles my stomach and does not add caffeine. After a severe episode she is typically awake much of the night. This happened last night.
After it became obvious to me that there was no way for her to calm down and sleep some more, we got up. I got her a bowl of cereal and some orange juice. She sat and worked the puzzles for a bit. I sat with her and worked on the crossword. I ate a banana and drank some lemon ginger tea. I asked her if she wanted to watch TV for a bit to see if she would get tired. She agreed and I played a couple of episodes of Steven Colbert. I can no longer sit up and watch his show so I record it for later. We watched a couple shows. Fortunately he was funny and Cheryl laughed here and there.
Today she is not in tip top shape of course and she fell over backwards in the kitchen. She is understandably fuzzy headed even though she slept until about 9 am. Maybe one day she will keep her hands empty when getting up from or down into a chair. But my wishes and encouragement which she interprets as anger go mostly unheeded.
On the drive to exercise class she asked if I slept well. I asked her if she remembers being up for a large part of the very early morning hours. She said no. The fact that she does not have a memory of being awake is not uncommon. I asked her if she specifically remembered watching Steven Colbert’s late show. She remembers that slightly. She apologized. She apologized for something that she has no control over and that frustrates me to no end.
There is no reason for her to apologize. It is not her causing undue commotion. Parkinson did it.
Watch out for kids hanging in the trees. Carpe Diem.