Last Night it was Bacall’s Cafe

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.

Oh well, 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.

August – My Birth Month

Happy birthday to me! On the twenty-first day of August I will note my seventy-second anniversary of my my birth. I have heard this referred to as “trip around the Sun”. I fell down the rabbit hole of how far is that? Naturally Wikipedia provided information and details. This is a trip of 5,062,273 million miles so far and it does not include any travel here on Earth.

Thanks to Mom and Dad for having me. I have gone a long way so far.

And now August is Zane Ryan’s birth month. (7# 3oz. 11:49PM) August 2, 2021 — forever to be known as Zane’s birthday! Babies are a gift.

How many miles will he travel?

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.

Dan is Coming

Cheryl particularly looks forward to visiting with family and friends. She also is close with several women from grade school. They refer to themselves as the Clementines. Lately they have been meeting via Zoom because several of them are taking care of folks that have immunodeficiency in some way. Cheryl really misses the face to face interaction they used to have in a restaurant somewhere.

Today her brother Dan brings lunch. They will sit and talk about family things.

A few days ago many of her siblings gathered at a restaurant to celebrate Dan’s birthday. I was there. I refer to myself as Cheryl’s personal Uber driver but lately I pay closer attention so that I can help her remember what was said and who is doing what to whom. It is not a task that I relish. It is what I do.

As a family group, their generation is beginning to die off. The second oldest died last year in the chronavirus pandemic. They seem to talk to each other more about their personal lives. Most of them are very quiet about that. The youngest talks often about what is happening in his life. He is a new grandfather and soon to be again. All of them live locally within an hour drive.

Our two families deal with grief and loss very differently. My sister and I talk on the phone more often than we did when Mom and Dad were still alive but even so, we might go weeks without doing so. Our older brother and the oldest sibling died last Spring. Our core group has been reduced to two. My sister and I are separated by two thousand miles and three time zones.


… And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.

from Desiderata by Max Ehrmann

Another favorite thought

Carpe Diem. July is almost completed.

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.

Do You Have Sons?

It was an totally off the wall question from her as we finished up the waffles I made for breakfast.  (I have finally succeeded at chocolate chip waffles without screwing up the waffle iron.)  She looked at me sincerely with a forkful of waffle and asked me, do you have sons?  I replied, yes we have two sons.  We have two sons?, she repeated.  Do you know who I am?, I asked her.  No I am not sure, she said.

This morning she is not sure who I am.  She accepts the fact that I am here with her.  She does not question why.  I am at a loss for words and ideas as to how to return her to now.

This morning she is not sure where she is either.  This inability to understand where she lives usually aligns with her inability to know who I am.  It seems to present after a night of poor sleep.  Early this morning she awakened at 1:30 AM or so and became anxious about having something to eat and taking her pills.  She was certain I was keeping her medication from her no matter how many times I explained that it was too early.

Where are we going to church?  After a few minutes of conversation about sons  and their ages, she asked me this question.  I replied that we would be going to Nativity at about 4PM this afternoon which led to a discussion about what day this is and what is going on tomorrow.   I thought she was back.

And then she asked me, is your wife going?  I did not immediately respond and she asked will you introduce me?  This group does not talk much about family.  I would like to know more about this family.  (smiley face)  I thought to myself, this could be a long day of confusion.

As I write this I am listening to her talk to my brother-in-law in Florida.  Cheryl inadvertently dialed him while looking at other stuff on her phone.  She stopped the call but Bill called back to ask if something was wrong.  There was but he was not able to tell from his far away position in Florida.  They chatted for awhile and I thought she was slowly coming back to reality.  Alas, she was not.  After she terminated the connection she asked me where was this place we had spent the day.  This is where we live, I told her.  This is our home.

Confusion about going to church and time to be up seems a common theme of the overnight early morning discussions.  This morning after the discussion about medication schedule and when the next dose was due she reported that she had a queasy stomach.  She wanted something to eat. I got her some cereal and orange juice.  As she spied the pills for 7AM the conversation returned to – I should be taking medicine now. She can be remarkably confrontational and difficult in her early morning confusion. I moved the meds to my office. She ate a little cereal and juice. She eventually announced that she could eat no more cereal.

We sat down in living room for a while and I coaxed her back to bed. Queasy stomach was still part of the conversation. She gobbled a couple Tums. She was unable to sleep without her bucket. She curled up with her bucket angry with me and eventually fell asleep. So did I. I have no doubt that her stomach was queasy although that was a new description.

On our visit to the neurology group did produce a new prescription to help with memory issues which relates to cognition and a whole host of other issues that tumble down from that. The new thing is Rivastigmine which is supposed to help. So far after half dozen doses, the jury is still out. I have been meticulous at making sure that she eats food when she takes this medicine. It can cause nausea.

She is anxious about fund raising for the Sunflower Revolution. She very much wants to raise more money than last year. Even as I explain that she does not have to provide the money, she worries that the word will not get out. My daughter and I have taken over the marketing of this for her.

Carpe Diem this has been a long day.

Time after Time

A few minutes ago I went in to check to see how she was doing. She told me that Tari picked out some really cute birthday cards this time around. (Tari was not with us shopping for cards yesterday but that is not important.) She is working on the August birthday cards. She had just put on her favorite Rod Stewart CD on the player in her little office. This song came on. It happens to be one of my favorites. This disease of Parkinson is slowly taking her from me and I long for the old days.

What good are words I say to you?
They can’t convey to you what’s in my heart
If you could hear instead
The things I’ve left unsaid

Time after time
I tell myself that I’m
So lucky to be loving you

So lucky to be
The one you run to see
In the evening, when the day is through

I only know what I know
The passing years will show
You’ve kept my love so young, so new

And time after time
You’ll hear me say that I’m
So lucky to be loving you

I only know what I know
The passing years will show
You’ve kept my love so young, so new

And time after time
You’ll hear me say that I’m
So lucky to be loving you
Lucky to be loving you

An old standard by Rod Stewart

It is a lament of times passed and an optimism for the future. I often struggle with that last part when this disease of Parkinson appears in the middle of the night or I am researching incontinence products on various websites. On melancholy days I think about the preParkinson times. It helps to not look back with longing for those experiences. Time only moves forward. I am grateful to have had those experiences with her. I am grateful for the times we have yet to experience.

Do I wish she did not have Parkinson’s disease? You betcha.. Cyndi Lauper has a song that might be more familiar with a similar sentiment. Once in a while I get very nostalgic for our previous life. I let it roll over me in waves. It is helpful.

Tonight’s menu is Salisbury steak, rice, green beans and corn. I am baking a small cinnamon crumble cake for dessert. These are some of her favorite foods. I am following the Dinner for Two cookbook by Betty Crocker which is her favorite cookbook. She will compare her version before our kiddos came along to my version this evening.

Hopefully the hallucinatory little girls that often populate our home in the evening will not appear and we can rest later.

She is looking for earrings after she awoke from her nap.

Carpe Diem.

Pizza Tuesday

Several years ago we began going to a favorite local pizza store one night a week. We tried different days and over time we landed on Tuesday as the day we went out for pizza. It developed into a tradition as my youngest son would say. It became known as “Pizza Tuesday”. Sometimes in conversation a friend might say, “Can we get together tomorrow?” I might reply, “No. That’s Pizza Tuesday.” It became sacred. We did, however, invite others to our favorite pizza store to share. Occasionally one could see local celebrities such as one of the local colleges’ basketball coach there snarfing pizza like the rest of us fans.

When we sold our old house and moved to our condominium we invited our neighbor and friend Jane to our Tuesday dining adventure. It became a time to chat and catch up. Pizza Tuesday as a tradition became even more ingrained in our routine.

The pandemic pandemonium stopped much of that activity. At first we carried out (took away) our pizza from our favorite pizza store and moved our tradition home to our dinning room table. That worked well for a bit. Over a period of approximately fifteen months we experimented with pizza that was not only pepperoni. We added vegetables and fungus. We tried other sauces from the menu. We tried other pizza stores. We tried take away from other food emporiums. We expanded our flavors.

As the pandemonium eased Cheryl and I slowly began to visit restaurants with few or no utensils or menus. I learned how to use the square bar code thingy that restaurants pasted to their tables, walls and doors. A restaurant with paper menus became a favorite when previously it was not a favorite. Victoria, a young waitress at the favorite-not favorite, began to recognize us by sight. We came when she was working often. We began to look for her and tease her a bit about her constantly changing hairstyle. There was a reason to go there beyond pizza.

Socialization is a strong motivator. I worried a bit for Cheryl’s safety and health but I recognized that for her it was important to simply get out and see people other than me. Even in a pandemonium, one must live. Neighbor Jane who is immune-compromised remained isolated.

This past Tuesday evening we went back to Pizza Tuesday. The three of us went to yet a different pizza store. Perhaps, for us, THE PANDEMONIUM IS OVER! Prior to this event we made a list of various foods both home cooked and restaurant dishes that we would like to have. Jane aimed this discussion specifically at Cheryl. We will read the list and tick them off one by one. And I hope make a new list at the end of this list.

We are all three vaccinated. Not one of us has bought into the disinformation distribution on social media. Eating out and conversation provides all of Maslow’s hierarchy in one way or another. This chart is similar to one I saw many years ago.

An old psychology chart that I have not seen for awhile.

Godspeed and Carpe Diem.