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.
Today was the day to walk or run or ride to raise money for the Sunflower Rev it up for Parkinson. Team SMILE made a good showing. The pictures say it all.
It is a magnificent day on the riverfront in Cincinnati, Ohio. And a large contingent of our family appeared to help Mom, Grandma, Aunt Cheryl and Cheryl raise money for sunflowerrev.org. The fund benefits Parkinson’s disease research here in Cincinnati. It also is a social event that promotes understanding of Parkinson’s and how it affects patients and their families.
Today is a sad day. Twenty years ago we were at Cliffty Inn in Indiana up the hill from Madison. We were on a spontaneous vacation trip.
The whole world seemed very quiet that day as we made our way to our eventual destination. I realized sometime later that morning that there were no planes in the sky. There were no contrails.
All brought on by a fairly well to do Saudi Arabian who somehow felt slighted by the U.S.A.
Well, Osamba bin Laden, you were evil incarnate. It is so very sad that you did not understand the Quran when you read it.
God is great but you did not understand that idea and believe.
Sometimes Nancy and Virginia come with us to exercise class. Are the coming today?
Those are not the names Cheryl meant to use. They are a couple random names that jumped into her head when we were getting ready to head out to the exercise class in the morning. We did go to exercise class today. In the afternoon we had a bonus activity.
On any day when we are on our way to a restaurant, exercise class, today a movie matinee, this question generally comes up. Is (insert name here) coming with us? Whoever she may be thinking about becomes real to her.
Today as a random afternoon activity, after all we are retired from working careers, we chose to go see a movie. We saw “Swan Song”. It is about a gay drag-queen hairdresser at the end of his life. Sounds like a “I dunno about that idea” but it was poignant and touching. Worth the money to me because I got to hold hands with my special person. Cheryl seemed to understand the nuance in some scenes which does not always work with her confusion.
She did tell me as the theater got dark that she really was tired of that Paul guy telling me what to do and telling me he is her husband. “You are my husband. Does he think I don’t know that?” She went on to say that Paul really was helpful but he gets angry when I don’t do the right thing.
Yes I do but I think I have two choices; get angry or just cry. I am never angry at her, rather, with her disease and what it has taken from her. In the middle of the night it is very similar to reasoning with a child who sees the world very differently than an adult.
We had a good conversation on the way home. I am thinking we should try this more often. Monday is “Boomer day” which means matinee prices are just 6 bucks. Much like Arby’s.
Cheryl carries her emotions close to the surface. It seems more so lately. When we received this thank you card today from a great-niece, she was very excited to hear from her. Ally thank you for being so considerate of your great Aunt Cheryl. I responded to her.
Dear Ally,
Thank you so much for the thank you note and response to our graduation gift. We wish you well in your new career. Can you tell us a little bit about that? What took you to Austin?
As for your questions, the Covid crisis (I prefer pandemonium) in many ways has passed us by. We were vaccinated in January and February at U. C. Health here in Cincinnati. They made it very easy by creating a drive through clinic in the garage of the building that houses Cheryl’s neurologist. In Cheryl’s case they sent her an email notifying her her upcoming appointment with her neurology group and she should make an appointment to get the vaccine by July – and oh by the way here’s a button to click on to set that up. 🙂 She was fully inoculated with the Pfizer vaccine before the end of January. It took me a few weeks longer because I had to set up being a patient at U. C. Health first and then had to wait for a slot to open up but I got both doses by mid-February.
Parkinson’s disease is great practice for staying isolated. Often Cheryl really does not want to do anything. Sometimes I have to push her to get going. She has an exercise class on both Tuesday and Thursday that is oriented towards Parkinson’s patients.
I do not know how much you know about Parkinson’s but it is more than just the jiggly motion with which you may be familiar. Michael J. Fox and his foundation provides a great deal of information and a great deal of money for research. Unfortunately there is no cure (yet) and the disease itself is degenerative. It affects everyone differently. Cheryl’s mobility is generally good with medication but in her case the disease is affecting her cognition and memory. She used to be a whiz at computer databases but now struggles with opening email. 😦
With your graduation card, I suspect she sent it to your grand mother. Cheryl often mistakes who is living with whom and who belongs to which family. I often have found myself correcting that information but it is a never ending task. It is tricky to keep track of your own stuff and someone else’s stuff too. 🙂
If you are interested I whine a bit and muse about things as they are in my life on my little WordPress blog [ www.adjunctwizard.com]. I have discovered over time that your grandfather and I think a lot alike. I did not realize that until a few months before he passed away. I am glad I was able to visit him before that happened. Sometimes I wish that we had been closer when he was alive.
Cheryl’s sister Janice who also lived in Florida passed away from Covid in August of last year. So, the pandemonium has touched our family closely.
We wish you well in your new life. Keep in touch and stay safe.
Best Regards and Godspeed,
Stay safe and be well Ally. May the road always rise up to meet your feet, May the wind always be at your back. Godspeed, young one.
My cousin called my writing poignant. It is a word of which I do not have a clear meaning. He called to wish me a happy birthday a few days ago. Instead he caused me to think about my list of childhood memories some more. The list is something that I work on occasionally as the mood suits me.
Poignant to me means personal, important and a little bit sad. So, I suppose this little blog of mine is poignant. It does come from my heart.
But more to the point why do I find anger in myself when I am attempting to be phlegmatic and calm and loving? Cheryl is often unable to help herself and unable to ask for help with certain things. It is not her that finds this behavior satisfying. It is simply her disease. I tell my inner self this over and over but it does not always last.
Let’s try earrings, for example. She loses them. She cannot get the little clip on that holds them to her earlobes. She loses the little keeper. I bought a box of assorted earring backs on Amazon. A thousand of them for $6. Often I find myself searching for something that requires the sight of a twenty year old person. Can you detect the creeping anger? (smiley face here)
Cheryl did not have her ears pierced until after we were married. Whoever pierced them was perhaps nervous about causing pain in another human being. Whether or not that is the truth, she flinched when poking the hole in her right ear at least. This has made it hazardous to get that earring inserted properly throughout her life. Her Parkinson’s wiggly motion makes inserting the post worse. Her occasional numbness in her fingers makes it virtually impossible and for some reason this drives me crazy. (smiley – sad face). Part of that might be because I want to find the beautician who did this originally and get her money back.
I know not why I focus on earrings for my anger. I was stuck there for a bit last evening when we went to church.
The opening hymn : Healing River of the Spirit
Healing river of the Spirit, bathe the wounds that living brings. Plunge our pain, our sin, our sadness deep beneath your sacred springs. Weary from the restless searching that has lured us from your side. We discover in Your presence peace the world cannot provide.
Wellspring of the healing Spirit, stream the the flows to bring release. As we gain ourselves, our senses may our lives reflect your peace. Grateful for the flood that heals us, may your church enact your grace. As we meet both friend and stranger, may we see our Savior's face.
Living stream that heals the nations, make us channels of your power. All the world is torn by conflict; wars are raging at this hour. Saving Spirit move among us, guide our winding human course. Until we find our way together, flowing homeward to our Source.
I take Cheryl to church as long as she is feeling up to it. I have little interest in church and religion but she does. I do however sing hymns that I know and am comfortable singing. (It is one of the things on my list that I referred to above.) Sometimes hymns touch me in an inexplicable way. This is one. My inner anger melted away.
After the service we walked through the parking area which was covered up with booths getting ready for the last day of the festival at our church. We ran into some friends and Cheryl began talking to Kay. I rudely interrupted to ask my wife if she knew to whom she was talking. She told me her name was Kay. I was rude. I suppose I was worried she did not know Kay’s name. I was wrong about that. It was not necessary to be rude. I apologized and explained to Kay.
I suppose church had gotten Cheryl out of her previous couple of days where she did not know who I am and where she lives. I was unaware and over protective.
Every day is a winding road. Reread the last two lines of the hymn. (smiley face)
MINTS– For years and years and years Cheryl’s favorite candy was peppermint. She liked it in most any form but we always and still do have a glass candy jar with peppermint lozenges (losengers is how she says it). She no longer eats these. We used to buy big bags of them at Sam’s Club and later we found that we could buy them in bulk at another store. We do not buy them any more because she no longer eats these.
After eating at Skyline Chili restaurant we still get York peppermint patties. We used to also get these at Sam’s Club but Sam’s is closed near us. I buy the stuff we used to get at Sam’s Club from Boxed Up online now. I have not looked for peppermint or York patties online at Boxed because she does not eat them anymore. I am not fond of peppermint.
pancakes – I am a big fan of pancakes. Blueberry pancakes, chocolate chip pancakes, fruit pancakes, it does not matter, all pancakes are good things. Pancakes are better when you do not have to make them. It is better to show up and eat.
For awhile I made pancakes for breakfast two or three times a week. Perhaps I overwhelmed Cheryl with pancakes for breakfast. For a long time when I suggested pancakes she responded that she would rather have cereal.
I am not fond of cereal except hot cereal. I am a big fan of grits and oatmeal if the oatmeal has been helped out with dried fruit and cinnamon. Grits are good anyway they come but cheddar cheese really enhances the experience. Shrimp and grits is just heaven in a bowl.
Lately we have been having pancakes again. Today we had scrambled eggs and toast.
calendar – The calendar seems to have lost its meaningfulness. All though our married life we have had a family calendar to record events. With great ceremony the new calendar is lain on the dining room table in the week between The Christmas and New Year holiday. Known events such as birthdays and anniversaries are individually recorded. Regular meetings are noted as well. Any doctor appointments and such are added. When January first comes around the new calendar replaces the old one on the bulletin board of important stuff and restaurant take out menus.
In the past year or so Cheryl has developed a kind of date dyslexia. The calendar has little meaning for her. Not only is she unsure of the day week but she is unsure of the week itself and how long a month is. I noticed this when she wanted to send birthday cards out for the following month earlier and earlier. One month she sent them out so early that she forgot she had sent them. People towards the end of the month got two and in one case three. I started helping with her birthday card scheme. It sometimes works. She is not very accepting of any method that I create to help. It has to be her scheme. We develop a new scheme each month which is not a satisfactory solution.
HOME – When do you think we will go home? I point out that we are home. Yes, I know we are home but when will we go home? – she says. I have always thought to myself that my sense of home is merely being with her. This thought occurred to me many years ago. These days, since she is on and off unsure of where home is, I think that I am a bit unsure of that myself. I detect her slipping away and that causes caregiver anxiety. Where will home be later?
DECISION – “trying to decide” is a phrase she uses when looking for earrings. Unfortunately in her current state it is a very hard task. This has been true of most of our married life. These days with Parkinson adding a factor of confusion, the deciding is measurably harder.
Overall maybe none of these actually matters but it is very hard as a giver of care. I knew Cheryl during her robust working years. For a couple decades or so after the kids where grown and on their own we focused on career, social life, travel. For several years she supported me while I worked to complete my M. Ed. and find a teaching job. We enjoyed it. Those years were for us. We have no regrets.
These years are ours to enjoy or not. It is our choice.
Today is our 51st wedding anniversary. I took as many of the kids and grand kids as could make it out to dinner yesterday evening to celebrate. It was a very nice meal. Cheryl told me she was grateful to everyone who was able to come and she had a great time. Later when it was time to go to bed she wished me a happy birthday. She said in all the confusion and celebration she had forgotten to do that. I thanked her.
Several weeks ago in early July she gave me this note. She was listing cards to buy at the time and she realized from her notes that our wedding anniversary was coming up in August. I remember on that evening a few weeks back that she was very proud of herself. Her math was still working. I just smiled and agreed with her and kept this note. I think I will always keep it.
Although life could be better if Cheryl did not have Parkinson’s disease, I would not have missed one day of our life together. Happy Anniversary to us!
And then not. It is a puzzling disease. It is odd and frustrating. It is Thursday. It is a exercise class day. I had no other expectations beyond that. The morning was kinda normal. I got up at 7AM for meds and she laid back down for a bit. We got up at 8AM. Overnight she had been angry with me for helping her to the bathroom. She seemed like she was dreaming. She forgot where the bathroom is located and became angry when I opened the doors to show her. She shifted into what I call “little kid” mode and said, “you don’t know everything. I’m going to bed.” (Her hesitant PD motion is gone during these episodes.) She has had other verbal dreams like this before. She does not remember them in the morning.
Breakfast was her usual Life cereal with dried cherries and milk. Orange juice is the drink of choice. She perked up a bit and I watched the news. The morning news is getting a bit repetitive; first the covid report, then the Afghanistan debacle and then the general disaster report, fire, earthquakes etc. Life sucks all over the world. The boys in Gaza were not throwing stones and other pieces of concrete at the Israelis across the fence. The Israelis were passing out booster shots instead. But Cheryl seemed to be doing well this morning.
Off into her office she goes to check email and see if there is any news. She checked for text messages on the way there. No emergency emails were found. This could indeed be a good day.
Close to time for her second dose of meds she reported being very tired. Indeed this is a normal wearing off of the medication. I suggested that she should take her ten o’clock and then lay down for a bit. After her 10AM meds she is up and down a lot. It takes some time for the medication to bring relief. She often reports a tightness or congestion in her chest. A coughing jag may occur. She might get up and wander the house with her limping hesitant parkie motion. I asked if she needed help with anything. She said no. I told her that her class was going to happen in a couple hours and she should start preparing for that and put on her clothes, put in her earrings and so on.
She decided I was being mean and I should leave her alone. Perhaps I was pushing too much for her to get dressed.
As a caregiver it saddens me sometimes that as I try to steer her towards activities that I am certain will help her feel better she is resistant. I admit to pushing sometimes to get her off the tired and feeling not up to it fence. She gives me her wrath in return. It would be easier to give in and accept her malaise. The relief is only short lived, as I have done that before and she wanders around in a funk for hours.
We discussed going to her exercise class at length. She told me that she knows it helps her but she was really tired at that moment. I suspect it is hard for her some days to summon up the courage, strength and ambition to go forward with this tiring disease. Her sister Janice often complained of being incredibly tired constantly. In Jan’s case she slept mostly in a lounge chair. Cheryl seems unable to nap in a lounge chair.
I asked if she wanted a little Coca-Cola and chips or a snack of some sort. Yes. What kind of chips do we have? – was her reply. Only potato chips, I think you ate all the Sun chips, I told her. Another thing to keep track of is her appetite and desire for certain foods. Up until about three years ago Cheryl always had some peppermints with her. It was basically the only kind of candy that she would eat. Today she never wants them but I have butterscotch blobs in the car because I like them. She likes them also.
She went to class. I noticed that she seems to be coming out of her funk. She had conversation with several of her fellow classmates on the way in. PCF is such a warm and welcoming place. As she came in and talked to people she perked up. As we were driving over to PCF she asked where should we go for lunch. Then she asked, “How about Skyline for lunch?” We have not been there for several weeks but it is a favorite of hers. (One cheese coney – no onions. Sinful.) We’ll see was what I thought at the time. We ate lunch at the Skyline on Plainfield Rd. (One cheese coney – no onions. Still sinful. I had a 5-way.)
We shopped at the IGA to buy groceries on the way home from Skyline.
We had corn on the cob and hamburgers for dinner.
After dinner she went to work on the labels for birthday cards. She was confused about printing labels when I checked on her but she was working on organizing things.
She came into my office at about 9PM and asked me to give her a ride home. She mumbled something like, “Mom has left so I’ll need a ride home.” I helped take her bedtime meds. I explained that we were already home and I would help her with printing the labels for the birthday cards tomorrow.
Wednesday night dinner out was a favorite place Bacall’s Cafe. She had a half BLT and a salad. I had pot roast, mashed potatoes and vegetables which turned out to be sauteed zucchini. It was a regular night.
Cheryl spent a great deal of the time trying to get her right earring in. She never did. The waitress tried to help but was worried about hurting her ear. Many years ago when she had her ears pierced the incompetent piercer did not get the hole straight through. For many years she was able to make it work. These days her PD fidgety motion makes inserting the post or pin often unsuccessful.
Eventually I convinced her that no one cared and she should put it in her purse and try later. We talked about different things none of which stuck with me. She did not have any odd topics to talk about. It was a dinner conversation that lulled me into forgetting about her PD. We teased each other as old married people do.
I remarked that none of her family came to her family gathering at her cousin’s house. She replied that maybe since they had been at our niece’s wedding the previous weekend they were doing other things. Perhaps she right, as family gatherings go, the clans tend to stick together with not much intermingling.
We saw several old acquaintances at other tables and booths. It was Wednesday afternoon and the old folks were out having dinner and a drink or two. Talking about this and that. She was having a good day for the moment.
When we got home, I settled into my recliner to watch a bit of news and for Nature to come on our local PBS station. She went into her office to look at the clutter and maybe check email. About an hour or so later as I was starting to read my book and tigers of India were saved for now, she showed me some pictures that she thought were of my sister Laura and her family from a trip out west. (POOF) she was off in PD la la land.
The pictures have little to do with Laura although she is in some of them and nothing to do with any trip out west but Joyce and Rob, our family’s only westerners, are in them. The pictures are of two Christmas celebrations twenty-five or so (maybe thirty) years ago.
This whole hallucination, delusional reality thing that seems to have developed during this latest phase of Parkinsonism is truly disheartening.
Last night she addressed me as “Dad” several times. I tend to ignore it when she does this because much of the time she merely cannot find a name or a term for someone or something. Occasionally it becomes a little game that we play until I guess the correct person or thing. She responds with, “Thank you” when I find the name for her.
Sometimes, however, it becomes apparent that she is having a delusional episode. It becomes apparent suddenly to me. I do not recall the exact context last evening but I became aware that she did not know who I am. I asked, “Do you know who I am?” She replied, “Dad always says you are Paul.” My heart just broke when she said that.
It is a hard to describe the emotion. It feels like something in between fear, anxiety, anger, empathy, love and disappointment.
A deep love for her as we travel this journey. One foot in front of the other as we travel step by ever so slower step. We make every attempt to enjoy the scenery and smell the flowers. We take as much joy as we can in the moment. It is hard sometimes but in the last several days new life has come into the wider family and we are happy for the new parents, grandparents, aunts and uncles.
A great fear for her future and perhaps I dread the eventual realization that I might not be able to care for her alone. Those thoughts tumble down into the mire of money and will it last and for how long and how long will we need external support and how long and how long. These thoughts go nowhere. No one can see the future and if you are a deep believer, there is a plan somewhere. It sure would be nice to peek at it to prepare.
An anxiety about all of those things is a first cousin to fear. Meditation and journaling helps. It is not my make up to leave things in the hands of others.
I have developed an empathy through walking this road together with her. It saddens me that I cannot fix it. Much of that thought comes from the feeling that the Plan is being developed as we move along the road. That sucks, big time. The engineer in me pushes back on idea of starting the mechanism while it still being developed. Poor practice as that will really blow the service budget.
A few months ago I realized that the anger I feel, a deep despairingly fist hitting anger, is with the disease and what it takes from her. I am embarrassed to admit that I am not good at redirecting my anger into action. Or deflecting my anger away from her by keeping it out of my voice. I am just not good at that last. I apologize a lot.
All of those things add up to a disappointment with the situation.
On the next day she was lucid, not confused and fine. Go figure. “everyday is a winding road” – Sheryl Crow
Adjunct_Wizard 