Sunday used to be Different

This story is about nostalgia and remembrances of past years. We used to go to 9AM mass. When the kids were small it was 10:30AM mass. Over the years as the priestly population dissipated and became smaller the parish we belong to reduced the number of masses from five to three to two to sharing a priest with another parish. Word is that is to change again here shortly as the Archdiocese of Cincinnati tries to find a solution to the priest shortage. The Roman Catholic church’s own rules keep it from fixing its own dilemma.

A few years ago we switched to attending 4:30PM mass on Saturday. Cheryl’s medication, sleep and “feeling good” circumstances changed when she could tolerate being in church.

Covid-19 changed it again. We stopped attending for a while. The archbishop said it was okay to not go to church on Sunday. People in secular society argued about wearing masks inside. The pandemic eased a little. Health officials said vaccines are coming but wear a mask for now. People argued about other folks telling them what to do or not to do. No one argued about the archbishop saying no one need attend mass. Attendance in person was no longer obligatory. (Is the archbishop telling us what to do?)

The church scrambled to put the mass online as a streaming service. Cable TV still provides a local service channel with an incredible amount of boring but sometimes interesting stuff. A live streamed mass with no videographer or camera operator can easily out do the cable public channel for uninteresting content. There are many boring live streams now. Many live on with YouTube. Seems like every parish has its own live stream. Public health and government officialdom said it was okay to go to church again but wear a mask.

And then little blue ribbons appeared to separate folks from sitting to close together in the pews. Hand sanitizer appeared in the back of church with little baskets of disposable masks. Everyone wore a mask to keep from inoculating others with our asymptomatic illness for many weeks. The ranks at mass were very thin especially the old people’s 4:30PM mass. An entire year went by in this fashion.

Random arguments started about vaccines and how they were made. Experts who knew little about the process spoke anyway spreading the gospel according to Dimwit. The church got on the side of social empathy and “get any vaccine you could.”

Are we riding the horse into the dirt? Many years ago I worked for a large company that kept shrinking and shrinking until it no longer existed. Remnants of it are still around but it no longer exists as a whole. I met one of the former management folks later in a different company around town. The conversation often drifted into what happened? The perceived fault always lay with others or some insurmountable object, however artificial that may be.

Is that happening to the Catholic Church? It seems that many stalwart parishioners spent a great deal of time analyzing what church meant to them. I know I did. The church is changing. I am changing. For me the church and parish is a spiritual socialization. And I like the stories in the bible, many of which I have a different take on then the priest might have in his lecture after the readings.

I started down this thought about Sunday not thinking about church in particular. We used to get some donuts on the way home from church and sat and ate them with coffee for me and tea for her and watched the prerecorded CBS Sunday Morning news magazine show. We did this for many years. I miss it. Cheryl no longer sits for any length of time longer that fifteen minutes to watch anything on TV. We would sit quietly and watch with only occasional comments from either of us. Later in the afternoon we would prepare a meal for her mother and my parents that evening. Sundays are different now. Some of that is age and some of that is the disease of Parkinson. Sundays are just different.

Carpe Diem! Even when the days are short and numbered, remember that we are all flawed humans but if we pool our talents the flaws are out numbered.

One Positive Thing

Edie posted this on Facebook. Her husband Tommy and she are further along in their Parkinson journey. She also has a much stronger faith in the Almighty than I do. But like Parkinson’s disease everyone’s faith is different.

From: The Kynard House
Posts, Notes and Parkinson’s

Tommy is with us still.
He rallied for a few days.
He is alert at times.
Family and friends have been stopping by.
Hospice is a blessing.
It does not seem real.

I know the sentences above seem devoid of emotion, but at this point, I’m like a tire that’s “out of round”.
It wobbles.

I’m on auto pilot.
I slip into the guest room to regroup.
I’ve vented when necessary…cried in bursts and then I get up and do what’s necessary.

God is with me and if there’s any sentence that says it all…I’ll say it again. God is with me.

In the very beginning when I joined this group, I asked the question,
“What is the one thing positive that Parkinson’s has caused in your lives?”

No one answered positively. All were negative responses. I couldn’t grasp that! Positive CAN balance the negative. I refuse to let the negative
outweigh the positive.

Because I’m an encourager, and empathic, I will add to my original post, because personal growth is always necessary.

This is what I have learned.
God is still with me. He is my rock even though I don’t take enough time to sit with Him.

As Tommy (my earthly rock and solid foundation) prepares to leave this world…I am addressing my soul, asking God to open my eyes to anything that I have closed them to…to open my eyes so that I can see my way through the maze of emotions.

Yes, Tommy is still with us and God is within me, all around me and beside me.

The positive?
I now fully grasp, “Fill me up, Lord!”

Edie Kynard
My reply

I think that “the one single positive thing” for me is finding the love in our relationship and making me aware of it. Our love for each other has always been there, after 51 years it must be, but this debilitating disease makes it hard to remember what life once was and what it can be. I have learned to do things I never imagined that I would or could. This damnable disease has caused me to find an inner strength I didn’t know was there. It also has shown me that it’s okay to show emotion and not be embarrassed. Godspeed to you both on this phase of the journey. May the road rise to meet each step along the way. God’s love be with you, Edie.


Edie, like me, writes a lot about her journey. Tommy seems to be getting worse as time has gone on and although I do not know them personally, it seems that he is not resisting PD as he once was.

Nor is Cheryl. Last evening her hallucinational behavior was particularly disturbing for me. The hallucination is one that she often has. She sees two little girls. Last night she was very concerned that no one was coming to pick them up. she began to become frantic about that. She was going to go out and look for the parents.

I reached out to my daughter and my sister-in-law. If I could get one of them to call and bump Cheryl out of her virtual world our evening would be better and she would sleep. It was my hope. Anna called her mom.

Later we took a walk and talked about Anna’s phone call. She was very animated about the discussion with our daughter on the phone. Taking her evening meds gave her a little indigestion as often happens. The girls were gone. Indigestion and hallucination seem to be mutually exclusive.

Oh. About love. Sometimes you will go to great lengths to relieve pain or anxiety in someone that you care dearly for. Sometimes adding mild pain (indigestion) relieves other dilemmas. It was unintentional on my part but her gastric distress relieved her other stress.

A couple years ago Cheryl started a support group at our church. She noticed that in addition to herself several other members of our parish had PD this included the pastor. We (I am the Uber) met several time in the small parish chapel. Covid chased everything onto Zoom for awhile. As we all peeked out from behind our masks we started meeting again in person at Parkinson Community Fitness in the evening. Cheryl always has a meeting to organize the meeting the Saturday before. Today she asked me to organize that meeting for her. Slowly, ever so slowly, she is letting go of things that keep her interested in going on.

I did not push back. I think of this as her project. I merely did what she asked because I love her.

Carpe Diem but seize anything that helps.

Once in a While but more Often Lately

She becomes anxious about not knowing where she is or who I am. Two days ago that happened as I was listening to the 9/11 broadcast on network television. In New York they had a solemn reading of all 3000+ names by various relatives and occasional commentary like – I never knew you Dad but I miss you. Incredibly sad and moving.

Cheryl became anxious and her world collapsed for a few minutes. Perhaps I should have turned the program off or at least turned down the sadness and remembrance of that day.

On the following day we participated in the Sunflower Walk Run to raise money for Parkinson’s Research. It was a wonderful day with the kids and family. Cheryl at the end of the day said, “Thank you for the nice day.” It was a nice day. But slowly, as often happens as the day wears on, she became confused about things. She was worried that she could not figure out how to get a list of participants so that she could invoice them for their donations. (her words) I gently pointed out that the U.C. Foundation had already taken care of that and it was not necessary for her to concern herself with collecting money.

And just now she asked if I noticed that someone is placing Jack-o-Lanterns in the bushes and woods behind our house. The sun is lower in the sky and as its light filters through the leaves it projects patterns much like a Jack-o-Lantern on the forest floor below. It is fascinating to look at the woods out back with another’s eyes. She shows me new things each day.

At the left is a view of the woods. At the right is a zoomed in view of the light patterns through the screen on the back patio. The one on the bottom right, even I can see how she interprets as a Jack-o-Lantern.

Sometimes Carpe Diem means to stand in her shoes and see through her eyes.

Carpe Diem again.

9/12/2021 — Sunflower Day

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.

Special thanks to Texas for helping out today.

Carpe Diem.

Last night I was Someone Else

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

Carpe Diem.

One Ear On and One Ear Off

Diddle diddle dumpling, my son John : Went to bed with his britches on. : One shoe off, and one shoe on; Diddle diddle dumpling, my son John — It is interesting what jumps into your head at odd moments.

This morning after sleeping in for a bit Cheryl was still sleepy when I checked on her and asked about breakfast. She decided cereal was good and I dressed the bed. She used the bathroom and when she returned began searching through things setting on the dresser in front of the mirror on her side of it. I asked what she was looking for and at first she did not want to tell me . Eventually she told me she was missing an earring.

She had worn her little star sapphire earrings to watch our grandson’s ballgame last evening. One was still in her ear. one was at that moment unfindable.

I had to attend a meeting at school this morning, so I would be gone for a couple hours. I promised that I would help her find the earring when I returned. Although I had extracted a promise from her that she would not disassemble the house looking for earrings, I knew that she would be thinking and searching the whole time I was gone.

Later after I came home from my meeting I looked for and found it. She had taken off one and put it in the jewelry box. She had left the other in her earlobe when she went to bed last night. She was very tired last night when she went to bed. She had had a long day.

Anna and the girls had come to take her to her exercise class. They went out to lunch at one of Cheryl’s favorite lunch places. That allowed me to go to my caregiver’s support group meeting at lunchtime. In the late afternoon we watched Max play baseball. It was a long day for her but she enjoyed every minute and she told me so on the way home from the game. “Thank you for the nice day, Dear.” she told me as we drove home.

The little ditty about my son John jumped into my head when I found her earring and became a hero to her this afternoon.

Diddle diddle dumpling my wife Cheryl

Went to bed with her life in peril

One earring off and one earring still

Unfindable in the morning chill

I find that I love her more each day and the debilitating disease of Parkinson I hate even more.

Carpe Diem

A Bit of a Crisis

When I was in California Cheryl had a severe bought of nausea that developed into dry heaves and spasms in her diaphragm. This caused my daughter to ring up the neurologist and as it turned out Cheryl’s doctor happened to be on the hook for answering the emergency phone. He instructed her to get Cheryl to the ER for help.

Our daughter called her brother who lives nearby for extra support just in case and took her to the ER near where we live.

A few hours later Cheryl came home after they had run several tests. She had no more bad experiences while I was away. I am very glad Anna was with her that night.

Sometimes the Diem carpe(s) on you.