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.
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.
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.
Cheryl went to high school with Rosie. Rosie went on to become a Sister of St. Francis. Cheryl went to the prom with me and four years later we married.
Yesterday after many scheduling issues we hooked up for lunch. Cheryl was moving very slow that afternoon. Rosie moved very slow with her and very gently held her arm into the restaurant and over to the table. In conversation, Rosie, the quiet calm and gentle person that she is with her own health issues, gently took Cheryl down a memory lane of remembrances from their high school years to their current time.
I slowed a bit and observed. Slow and gentle were Rosie’s movements, her companionship, her conversation. I learned something.
When we got home Cheryl rested for a bit.
I realized that Cheryl needs to go at her own pace. I always knew that she did but I did not always observe that pace or make myself slow to her pace. Cheryl’s pace is principally Parkinson slow with occasion spurts of Parkinson fidget and sprinkled with Parkinson frantic and a little normal motion and conversation.
She did not seem really very tired or ready to go to bed at what I think of as her normal ordinary bed time of 9:30 – 10 PM. I tried to exercise what I had observed earlier in the day and suggested we play a card game or work a puzzle for a while. She said let’s play Uno. We played with half the deck. She shuffled the cards and asked, Does everyone get seven? I said yes and she did not deal any extra players. Uno for those who do not know has a simple theme. Follow the color or follow the number. She could do that for about an hour or so. She began to notice on her own when she could not tell the difference between red and green. She declared herself tired about 11:30 PM and we got ready for bed. She slept soundly for several hours — all at her own pace.
Rosie taught me something. Let Cheryl set the pace. And if she is not around, think about letting God set the pace. Life is peaceful at Godspeed. Life at warp-speed requires quick reactions and having your shields up at all times.
Are the heralds of Spring. In bright yellow against the budding green plants they shout, look at me. I am here. And dare the deer to eat them. When Mr. Sun comes out they shout their greeting louder.
I suppose they do not taste very good.
I Wandered Lonely as a Cloud By William Wordsworth
I wandered lonely as a cloud That floats on high o’er vales and hills, When all at once I saw a crowd, A host, of golden daffodils; Beside the lake, beneath the trees, Fluttering and dancing in the breeze.
Continuous as the stars that shine And twinkle on the milky way, They stretched in never-ending line Along the margin of a bay: Ten thousand saw I at a glance, Tossing their heads in sprightly dance.
The waves beside them danced; but they Out-did the sparkling waves in glee: A poet could not but be gay, In such a jocund company: I gazed—and gazed—but little thought What wealth the show to me had brought:
For oft, when on my couch I lie In vacant or in pensive mood, They flash upon that inward eye Which is the bliss of solitude; And then my heart with pleasure fills, And dances with the daffodils.
As we get older and this goofy damnable disease takes more from her I find that is more important to find those gems of experience and good times.
I did not realize how important that is to me and to Cheryl. Today was a pretty good day. I expected it to not be so. Cheryl slept little overnight.
Ordinarily when that happens she is tired and lethargic the next day or maybe that is just me. Today she got up and had some breakfast. She took a shower with no help from me. We went to exercise class.
I made dinner that evening. I made a Betty Crocker noodle thing that I had not done before. We had our neighbor Jane over to eat with us. Both Cheryl and Jane pronounced the recipe good, so, I will make it again.
At exercise class we were reminded that this evening the Parkinson Community Fitness is having a Beach Party theme party that evening. So after dinner and Jane returning to her condo, I reminded Cheryl of that and asked if she wanted to go. She said yes if it was not too late. It was not so we went.
At first she seemed iffy as the seven o’clock meds shook her well being for a bit but she came out of it okay and had a good time. As you can she by the picture, she had her smile on. We both had a good time and we even got to dance for a bit. (It was more like a sway. :-)) — Thanks to another Jane at PCF we have these great pictures on our Frameo electronic picture frame.
Cheryl and Paul, 2022
In both of these pictures, she has her smile on. Carpe Diem.
She asks me if we are staying here tonight. It is a repetitive theme in her thinking and confusion. Not knowing any better I try to answer her honestly and without any teasing (which she does not understand anyway). Looking at my old notebooks and blog posts it seems that this particular confusion and some others, who I am, for example, have a cyclic appearance.
That was last night. This morning she wants to pack a suitcase for college. The idea that she needs to get ready to go off to college is totally new. The college she wants to go to happens to be the one I am a graduate of and our grandson has been accepted into for the Fall semester. These facts are probably all tumbled up in her head and sort of explain her confusion.
Another interesting nuance is conversing with me as though I am an acquaintance, someone she has not spoken with for some time. We are catching up. We spent most the of the day talking in the third person as though acquaintances. It was a warm late winter early spring sunny day so we took a walk in the park. We talked about many things. We talked about the weather of course. We talked about how far you used to be able to see across the little creek we were walking next to. On the other side of the creek is a concrete and asphalt reclamation business with mountains of paving to crush and recycle. It once was a smaller pile of refuse.
We talked about children. She told me about hers and asked me about mine. She was amazed and intrigued by the fact that our children had the same names. It seemed that the only difference was that her children were in their teens and twenties and my children were middle aged. (smiley face here) It was unimportant to her that these teenagers had children which were her grand children. These conversations were hard to follow but I was able to ask questions and find out more like any good friend would. Most of the time I was able to keep the tears out of my eyes as we created a memory of a good day for her.
She suddenly switched topics and talked about what to do about Thanksgiving dinner. I gently pointed out that it was barely March and Thanksgiving day plans were several months away. Undaunted she replied that it would be here quicker than you think. There is a lot of truth to that last comment. I have noticed as I get older the year goes by quicker.
I promised to get right onto organization of who does what. I fired off a text message to our family text-party line and got positive responses from everyone. Our daughter volunteered to host.
She writes uplifting and spiritual thoughts in a weekly email newsletter she calls “Sunday Paper”. Today she writes about changes in life. She struck a chord in me but probably not in the way that she intended.
This Parkinson thing is a dramatic change in our life. Maria uses as her focus a friend that is moving far away and talks of pivoting toward the future. What struck me is Cheryl is moving away inside. Not purposely of course but this morning the conversation centered on location and space. She believes inside her head that we are far away from home. She asked are we going home today?
Home is a concept different to everyone. I told Cheryl as I always do when she asks this, we are home. We live here. Sometimes I go into more detail and tell her when we moved. She has a puzzled look on her face when I tell her those things. Sometimes I regret moving out of our big old house in Pleasant Ridge when we have these conversations but I have no basis for regret. She is confused now and most likely would be if we were still living in the big old house.
To me home is not so much a place as a situation. If one “googles” home the famous web search returns thousands of pictures of various houses in various places but a building is not home. Those houses may or may not be home to others.
Cheryl is where I am home. Our life was unimaginable to me when we got married 51 years ago.
On this snowy slowly warming February Sunday I am reminiscing about life and home and the twisty turny path we all follow though life. And that is my concept of home.
She sometimes thinks that we are not home. I am as long as I am with her somewhere.
A boy, a fox, a mole and a horse – great book for meditation
The puzzle is completed. Hallelujah! Kill the fatted calf. The Christmas 2017 puzzle is complete. So, now the question is what to do with it? I suggested that she break it into the tiny little pieces she started with and pass them on to her sister Nancy. She is still thinking about it but that is probably what will happen.
Who knows maybe this is a new hobby. It certainly is an occupation once it starts. Cheryl seemed very content while this whole process was happening. Cindy is an enthusiastic cheerleader and champion during the activity. I was not gone for a long time but when I came home they were puzzling away.
I started dinner. I had been out in the rain that we had ahead of the icy wet snowy crap that came today. While out I decided it was a good day for stuff soup.
Stuff soup:
2 small onions chopped
several (5) carrots pealed and chopped
several (4) small potatoes pealed and quartered
several (5) stalks of celery chopped
a head of broccoli chopped – the stems are good in soup the flowers tend to disintegrate like peas.
the end of the bag of frozen corn (maybe ½ C.)
half a cup or so of frozen peas.
½ lb. of mystery beef – bought out of the get rid of it soon shelf at IGA – chopped int ½ in. cubes
some whole wheat pasta for health reasons.
In a dutch oven put about 2 tablespoons of olive oil and dump in the onions. Stir them when they start to sizzle. Rinse the carrots and celery and when you are satisfied with the onions, let them brown a bit, dump in the beef. Brown the beef for awhile and enjoy the aroma. When the kitchen smells like a good diner, dump in the celery and carrots. Stir it up for a bit and put the lid on and give it a few minutes. This is a good time for a little salt and pepper to taste.
When you are ready dump in a box (32 oz.) of whatever broth you like. I used beef broth here. Bring it all to a boil and start the oven set to 300F.
Dump in the frozen peas, corn and chop the broccoli into small pieces. When it starts to boil again, dump in the broccoli and put the lid back on and stick in the oven for 30 minutes or so.
Add the healthy pasta at the end of 30 minutes and set the timer for 10 minutes more. Set the table and find some rye bread to go with everything. Put out the butter, bowls, silverware, etc.
Sit down in the kitchen to eat so that the puzzle can be viewed from afar. It is better to leave the dining table undisturbed. Speak to the small children attempting to mess with the puzzle even if you cannot see them.
Maybe I should look for the special table to build the puzzle on. I kind of liked having dinner at the dining table. We sat closer to the little apparition girls and I could chase them away as necessary while eating. The little girls seem to show up a lot at dinner time.
Adjunct_Wizard 