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.
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.
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.
Sometimes while caring for someone with a degenerative disease, we have occasion to doubt ourselves. To think we are the wrong person for the job. To think God must have made a mistake – surely someone else could do better. After all, we are so imperfect. Our loved one is not getting better. (We knew […]
This morning after a remarkably good sleep, Cheryl got up and took a shower. She spent a lot of time getting cleaned up. She finally came into the kitchen looking for breakfast about 10am just as her alarm went off signalling the next dose. I asked her if she wanted cereal or something else to eat. She asked, Are there any donuts? (I have to start making some and experimenting with freezing them so they are readily available for breakfast.)
UDF donuts
I got donuts from the UDF store about a mile away. She likes their “kettle danish.” Two have been enough in times past so I purchased two. She is generous with food and offered the second on to me but I did not accept it.
I signed her up her April PCF classes and noticed the hands class teacher is back from Florida. She wants to go to “hands” class. This class has been on line while the instructor has been in Florida for several weeks. That style class really does not work for Cheryl.
Where does “April Fool” come from? I like this explanation I stole from India.com. It is not hard for me, a catholic, to believe some past pope guy started this nonsense.
It is believed that Pope Gregory XIII was the one to be blamed. He ruled the new calendar to start from January 1, instead of the previous celebration of the new year at the end of March or April 1. Though, the change in the annual calendar was brought into practice by France. But across Europe, the people continued to follow the Julian calendar. And those who failed to register the use of a new date and ended up celebrating New Year in April have been marked as ‘Fools’. Hence, a particular day for fools came into being.
Adjunct_Wizard 