admission of doubt

No Church Yet

Posted by

0

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.

Last night I was Someone Else

Posted by

0

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.

On Making Pies

Posted by

0

Perhaps if one would choose, a bit more experience would precede making a pie for company.

About Thursday of last week, something she saw on television or read in the paper caused her to decide that she would make a pie for dessert on Sunday.

In her mind’s eye, it was no big deal. In her mind’s eye there is no Parkinson’s disease. In her mind’s eye she has plenty of stamina. On the way home from dinner at Through the Garden Restaurant on Friday evening we stopped at the grocery and bought some apples. On Saturday she cut up and peeled three of the four apples and had to sit down. I peeled and cut up the last one and another for just-in-case.

She took her meds and laid down for a bit. When she felt a little better, I made the crust under her tutelage. We (I) rolled it out and started over about a dozen times. I quit to put on shoes and gather my stuff for a trip to the store for a premade crust. On the way through the kitchen I stopped to try just once more with a twist.

My twist worked and we (I) assembled the pie.

Today we will take it to my son’s house to see how it turned out.

My other son’s wife is an expert pie maker. I probably should have subcontracted the pie to her and they live pretty close by. Maybe next time I will do this or maybe next time I will practice making crust.

Martha Stewart has a website full of ideas.

My pie – ready for transport

Carpe Diem!

Occasionally to Her I am a Different Person

Posted by

0

“Not everything that is faced can be changed, but nothing can be changed until it is faced.” 

James Baldwin

I do not know much about James Baldwin. He was a black man and an author. He wrote “Go Tell It on the Mountain” and other things. He died a while ago. This quote which I tripped over this morning reading through other articles not from mainstream media as my sister-in-law likes to say, spoke to me. Lately, Cheryl has been struggling with seeing extra people in our home and upon occasion, though not wondering who I am, seeing me and sometimes not seeing me.

Yesterday evening she asked me if I had talked to Paul about something. I do not remember what the something was. It was not important . I quickly realized that she thought I was not me. I replied with I am Paul.

These moments seem to come early in the morning or late in the evening. It is dark. The lights are on here and there.

She talks about dad doing this and dad doing that. The first time she started telling me about dad was when I changed the dimmer switch on the light fixtures in our master bath. I had added a newer dimmer control with a toggle. I had thought it to be more convenient for operation in the night. It is and she approved of its installation. She told me so that night by saying – did you see the new light switch dad put in? It works great.

I did not ask who she thought I was. I merely acknowledged that it was a good thing that he put it in the bathroom.

That guy who brings the pills… is a common early morning remark lead in to some comment I said when I got out of bed to turn off the alarm and retrieve her first dose of medications for the day. There are many of these; That guy who brings the pills in the morning, he said we were going to the store today. (for example)

Extra people appear to her in our home. Not religious apparitions but little girls and sometimes their guardian an older woman will appear with them. A few days ago when I returned the bowl that had contained her pills and the water glass to the kitchen, she asked me what that woman wanted. I told her that there was no woman there. I was merely putting the glass away. She accepted that.

For many months, I had accepted that this observed change in her behavior and thinking was just a natural progression of Parkinson disease. This behavior does not present itself when she and I visit her neurologist. I sent him a note before our last visit. We talked about it at length when we were there last time.

We are in the midst of slight medication adjustments and a series of pathology tests to rule out any physiological problems that could cause symptoms such as these.

So far these are all negative which makes me a bit sad. She is in the minority of parkies that the disease affects her cognitive function.

It is now more important than ever to seize the good moments, live in the present and jettison the anxiety for the future.

Face the thing. Maybe the outcome can be changed. As a caregiver do not forget that you have greater knowledge of your loved one than the doctor does. Tell the doctor what you see. It will help to find a solution.

And don’t forget to Carpe Diem!

Who are you?
Who, who, who, who?
Who are you?
Who, who, who, who?
Who are you?
Who, who, who, who?
Who are you?
Who, who, who, who?

— Peter Townsend