No Church Yet

Last night we sat outside for a bit and watched the International Space Station fly over. She was very excited to see it. She had found an article in the Cincinnati Enquirer a few days before that described upcoming events in the night sky.

We live on top of a hill and have a fairly unobstructed view of the horizon to the west. There are buildings, of course, but all in all not a bad view. After the the ISS disappeared from our view behind our building we went inside and she wrote this note to our children and a few other random family members. She wrote it in Word and printed it out and then asked if I could send it to our kids. This morning I did just that.


Hello, Anna, Scott, David, Janice, Jan, Nancy, Bill Farmer, Iris, Virginia, if I forgot someone, please pass this information along,

During this time of the year, there are often beautiful sights in the night sky. Paul is aware of these because he often researches some of the software that is available. You do not need to have access to special software… although it is
helpful. You can see some of the stars and planets without any special equipment; you can watch the International space station as it travels across the evening sky. These sights are magical! Many if you have clear skies at night… some of them are visible in the early evening. When you learn that there is a lovely event that is expected to occur, get the kids ready for bed, explain the event to them… where to look in the sky, etc., they should ask their
teachers about the night sky.

We found our information for tonight’s show in the Cincinnati Enquirer, the subtitle is “Crescent moon next to dazzling Venus.”, on page 5A.

Love,

Grandma. Aunt Cheryl, and any other relatives who may enjoy this.

The morning started pretty normal. The VERY LOUD ALARM clock awakened me to get her 7AM meds. I helped her to the bathroom and waited on the edge of the bed for the toilet to flush. She took her meds. We laid down again for a while.

Later I got up to find coffee and watched TV for a bit until Cheryl got up. She popped out of the hallway to our bedroom all excited because she could not find any underwear. In my stupidity I pointed out that she had underwear on just no pajama bottoms. (She was confused getting up this morning but I did not understand the extent of her confusion.) She was intending to get dressed for church but I did not realize this at the time. I was pleasantly ensconced in my Saturday morning coffee and newsy programs.

The newsy programs I have found to be not so newsy. The pattern is repetitive and to me boring — Covid we’re all gonna die; the latest political kerfuffle; desperate folks swimming the Rio Grande trying to get to Texas; some weather activity. Lately there seem few MASS SHOOTING events that make the news. Are they becoming commonplace? Or is it merely that most do not rise past some low bar of heinousness that is defined somewhere.

Nevertheless She was looking for underwear so I went back with her and found some undergarments which she pronounced good. I asked if she needed more help and she said no. I resist being a helicopter care person because it seems to anger her when I give unsolicited help. I went back to the coffee and pressed play on the DVR. This is a handy way to watch a two hour news show which is actually fifty-seven minutes long with a lot of breaks for commercial messages about Prevagen, Progressive insurance, the Good Feet Store, Kroger’s and the local weather. With a pre-recorded program you are able to fast forward through the windows direct USA.com and the rest of the crap that comes with commercial television. Cable TV is much better with no commercials and the inability to speed through the ads. (Facebook has this same model.)

After a suitable period of time, it takes concentration to speed up the saved file and catch the actual stories from the Saturday news show, I returned to the bedroom and realized my error. She was all dressed up for church and fidgeting with her earrings in front of the bathroom mirror. I apologized to her and told her that church was not for seven more hours. It is not time to go to church yet. But she was dressed and ready to go.

She blew up at me a little. “No one tells me. Neither of you told me anything!” I was two people. One in the mirror and one behind her. I admit I did not think of it. Almost everyday this week when she woke up she would ask, “What time is mass again?”

This seems to be turning into a constant in this life. For the past few weeks she awakens thinking it is time to go to church. I usually tell her – no this is (mon, tues,wednes,thurs,fri)day. Church is on Saturday afternoon. If she does not ask I do not tell. It worked for Bill Clinton, alas, not for me.


I find in myself an anxiety about getting something fixed before she spirals off into the weeds. By this I mean some task with which I have decided to help her. Her interests are not always my interests. Cheryl has taken on the task of sending thank you notes to those who have participated with or donated to the Sunflower Rev It Up for Parkinsons walk/run/ride last weekend. In this new world of no white pages phone books and no landlines it is harder to discover the addresses of those who have disconnected from the 48VDC copper transmission lines. For a parkie with no sense of how else to search that information it is impossible.

There is some confused repetition to her actions and to our life. I will tell her I will do something for her and find that a few minutes later she is doing whatever that may be instead of waiting for me to complete that task. I admit to not being johnny-on-the-spot about it. Her needs are not mine. Her interests are not mine. And I might have to gracefully let go of whatever mundane task I have given myself to do.

It stresses me a bit. I worry about letting her wander off into the weeds of Parkinson confusion, delusion, hallucination and altered reality. But it does provide some relief to me as long as it is not harmful to her. At least, that is my selfish view. Even now as I pour my inner thoughts into this commentary she is reading and re-reading a two year old story she wrote about the beginnings of whoopadiddee as though it is new.

I suppose the idea that nothing and no one cannot fix her confusion is most troubling to me. As long as she does not seem to be lost completely to me I let it flow around me. It is disturbing to my soul. Occasionally I am two people, the one who lives with her and that guy who brings the pills in the morning. Once in awhile I am Paul.

Alas, Carpe Diem.

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.

Are They Going Today?

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.

We could do both! She likes Arby’s.

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.

God Damn this Disease of Parkinson!

Yesterday was Hallucination day! I try to schedule very little for Monday. When I was still working it was one of those days that it was unnecessary to plan. Monday usually awoke with a bang and set the tone for the rest of the week. These days it is merely “wash the bed linens” day.

Yesterday which was Monday also was Hallucination Day. Cheryl’s little girls visited for most of the day. They were vividly apparent to her. She talked to them while she was working on organizing her stuff.

I had taken her medication to her in her office on Sunday evening. She was talking to her cousin and spilled the water on a couple of address books that she uses to organize the birthday card activity. A disaster occurred when the books got wet. Yesterday I got the hair drier out and showed her how to use it to dry the pages. She spent a couple hours and an enjoyable conversation with – she said – Virginia. It seemed harmless so I went with the flow. I worry about the eventual outcome.

An aspect of this is that I am able to get her to come back from who she sees by talking to her directly and getting her to tell me who or what she sees. At least she doe not see visions of horror. A drug she took about three years ago caused horrific visions especially at night.

These days she sees her sister Janice and our granddaughter Virginia mostly. Yesterday she saw her Dad, Mom and my mother. She had a long conversation with my mom on the back porch as she swept some twigs and dirt off it that was left by some storms that passed over during the past weeks. When I asked her to come in to eat dinner she asked if my mother was eating with us. Pointing out that Mom was dead dissipated the vision.

The hallucinations are activity related. She talks to Virginia when she is doing arts and crafts. Janice shows up at night when she is sleeping or awake to go to the bathroom. Her mother seems to appear when she is thinking about and working on the card list. It seems like she occasionally mistakes me for her dad when I am working on some household project. Our sons come and go at random in her reality. She often thinks our youngest is here when we are getting ready to eat.


A favorite organizational chart or crafty Venn Diagram

Every now and then the whole confusion and got to get organized thing adds together with the memory thing to make life miserable for a few minutes or hours while I try to locate an important something for Cheryl. Today it was a couple of checks that her friends who are not internet savvy gave to her to donate to her sunflower fund raiser. She put them in a special place while I was not paying attention. Just when things are going smooth and the road looks straight a tire blows out and the vehicle veers off into a ditch.

It is much easier when I can see where she stashed (whatever) in the Special Place. The checks were discovered inside an old envelope from our nephew Stephen that was used to mail a thank you card to his grandmother now deceased. I suppose the envelope was kept because it had a current address for Stephen at the time. Why it was not recorded and then pitched is beyond this humble person’s understanding. Why it is in our house ten years later is less so.

Caregiver Anger — Damn this disease! In her confusion she found this envelope parked where Jill and Michael’s envelope had been parked for weeks. (The Special Place).

It is possible to laugh and cry at the same time.

It would be so much better if she was merely slow and stiff. I say this without meanness. If this was merely a physical disability. It might be easier for me personally to deal with but I am merely speculating. The mental difficulties come and go. They go less so of late. Mentally she is still young and agile. In the present she is older and fragile.

I worry about her falling and then she tells me she can not find something. I help her to find it and she is sorry to have brought an extra task to me so she puts herself in precarious positions to help look for it.

It is a repetitive story.

Carpe Diem.

A Severe Bout of Hallucinations

I started this commentary about ten days ago but it is a recurring theme. It has made night time sleeping a bit tenuous. But as I think back about the problems she was suffering through I am heartened by the fact that this was before her visit with the neurology folks. And comparing then to now I see a bit of change with her new medication.

Looking back — Cheryl sees little girls in our house. She associates them with various nieces and grandchildren when they were younger. Perhaps these apparitions are in the four, five and six year old range. Janel as a small child she has reported to me is in her office. Sometimes she is with Virginia and Laurencia as young children if there is a group of kids.

Sometimes the kiddos have a woman who keeps track of them. Over the past few days I have come to realize that the woman who keeps track of them is Cheryl. Listening to how she talks about the woman made me understand that she is talking about herself as though she was standing outside of herself and looking back.

Hallucinations are more common than one would think as this old article points out. I have expended a great deal of time researching auditory and visual hallucinations. Brain chemistry is fascinating and a seriously deep rabbit hole to fall into. Hallucination is merely altered chemistry of which we know surprisingly much and little.

Carpe Diem.