Month: July 2021

Dan is Coming

Posted by

0

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

Posted by

0

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?

Posted by

2

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

Posted by

2

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

Posted by

0

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.

Sweet, Fruity and Well Balanced

Posted by

0

That is written on the front of my often bought bag of Eight O’clock coffee. I thought a good life philosophy.

Overnight was a hard one. Cheryl has been having a rough time sleeping at night. She has the normal seventeen trips to the bathroom overnight that occurs with any older person. Her Parkinsonism intensifies this experience.

The past few nights I have trained myself to get up with her. I have tried to get my system on her schedule. We started this because a few nights ago she awoke in a panic. She worries about incontinence. In her dreamy wake up at one o’clock in the morning, she was certain it had happened. She awakened me and I helped her to get cleaned up and new pajamas and other anti-leak equipment. (The pajamas she wore to bed were fine as were the other things but in the early morning dreamy state it is not important to argue.)

Since that experience I have awakened with her to guide her and help. I have to admit I am cranky pants in the early morning hours. It is sometimes difficult to get her interested in going back to bed. I have taken to hiding her medications occasionally because she has taken them in the middle of the night. I am uncertain that I will wake up with her and I worry that she will over medicate and inadvertently harm herself.

Last night and early morning was particularly bothersome. We got through it. I let her sleep a little later than normal before I gave her the mornings meds. She and I came to bed afterwards and slept a little longer.

Today she is very tired. She told me this earlier after her second dose of meds for the day. I told her I was not surprised at that as she had not slept well the night before. She replied that she did not remember. It seems unimportant to discuss overnight difficulties with someone who has no memory of events. I dressed the bed and helped her to lay down for a late morning nap.

Maintaining sweetness, a fruitful and well balanced life as a caregiver to a person with a chronic affliction can be hard. I have no mystical, magic or wise solutions to the stuff that pops up. Meditation does help to calm the caregiver.

Meditations (From Davis Phinney website)

[1] The first one-minute meditation involves counting your breath cycles. You count every exhalation from 1 to 10. Once you reach 10, you can go back down to 1 and continue the cycle as long as you’d like. In the audio recording, with my breath cycle, I only counted from 1 to 10 once in the 1-minute meditation.

[2] The second one-minute meditation is also a breath counting meditation. You count at the beginning of every breath cycle before each inhalation. We count cycles of 10 breaths. Once you complete 10 cycles, you go back to one and continue the cycle.

[3] In the third one-minute meditation, we take a breath before we begin to notice where we feel the breath most acutely. It may be at the tip of the nose, in our chests, in our bellies, or somewhere else. For the entire minute, you focus on the region of the body you feel most throughout each breath cycle.

[4] In the fourth one-minute meditation, we follow the entire breath cycle with our full awareness. We follow the breath from the first area we notice it (for me it is the tip of the nose) until it expands our chest and bellies, we pay attention to the way it feels when our lungs are full of air, and then we follow our full exhalation. We continue to be present with our breath and bring full awareness to the sensations of inhalation and exhalation for the entire minute.

[5] The longest guided meditation is a five-minute body scan. Body scans often range from 15 minutes to 45 minutes; however, similarly to the breathing meditations, I wanted to make this a shorter introduction to the experience to see what feels right for you. We scan from the feet to the top of the head, breathing as we bring awareness to each new area of the body.

This small list of meditations help with calm. They work for me sometimes to help me relax.

Carpe Diem

Old Cars

Posted by

0

I have never really been a car guy. The first car that I owned was a 1956 Chevrolet not a Bel-Air, the other one. Two tone white over blue. I bought it from my grandfather for $100 in 1968 or so. Mom insisted I pay grandpa for it. I am pretty sure he would have given it to me. I gave him $100 of my hard earned cash in cash from random jobs.

I loved that car. It had a steering wheel like you see in buses today. It was huge. A friend of mine and I rebuilt the engine. Replaced several of the valves. It was a good experience many kids today have not had. Spending your own money. Fixing something that you can use for yourself, some work that you can be proud of and show off. I was seventeen then. Life was good. I was living on Dad’s dime and gave my cash to grandpa.

When we got married, my wife had purchased a 1969 light blue VW beetle as her first and for many years of our marriage, our only car. I do not have a picture. I wish I did. I loved that car too. In its later years you had to lift your feet up if your went through a puddle. The floor pan was famous for rusting through on those neat old cars. We owned it until about 1985 or so. It is the only car other than the ’56 Chevrolet – not the Bel-Air, the other one – that I ever personally worked on.

This is the wrong color but it brought back memories. And it has been jazzed up more than ours was. A few weeks back I visited California to attend my nephew’s wedding and visit with my sister. Good memories of the trip and this picture of an old VW made it worthwhile.

One Ear On and One Ear Off

Posted by

0

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

The Parable of the Lost Mind

Posted by

0

The Parable of the Lost Coin; Luke: 15.8 – Or what woman having ten coins (when I was younger, this was talent) and losing one would not light a lamp and sweep the house, searching carefully until she finds it? And when she does find it, she calls together her friends and neighbors and says to them, ‘Rejoice with me because I have found the coin that I lost.’

This story came to me as do lots of stories from the bible and elsewhere after a cataclysmic episode in our life with Parkinson’s damnable disease.

This morning was a confused and befuddled one. This is not unusual in any way with this annoyingly debilitating disease. As a caregiver I just pay attention to be assured that nothing catastrophic happens and when it happens one just cleans up as best as you are able. This morning after she had a light breakfast of cereal, two muffins, orange juice, apple pie and tea she went into her office to check things. I heard her talking into her closet as I passed by with a load of laundry.

After loading the washer I asked who she was talking to. Often she would answer these two women or these two girls, this morning she responded with ‘myself’.

She told me that she could not find the stack of yet to be mailed birthday cards that we had put together the week before and propped next to her computer. She was frantic to find them. (Like the woman in Luke’s story.) I told her the cards where there somewhere probably just under something and not immediately visible. As I went out to gather the rest of the laundry I looked in all the usual places for the stack of cards. After I made my circuit and put the rest of the laundry near the washer I checked on her again.

She had found the cards. They were turned face down on her desk and underneath some collection of printed emails that where clipped together. She explained that and then spontaneously burst into tears.

The saddest, most maddening thing to a parkie with the beginnings of Parkinson’s disease dementia is the knowledge that her cognition is deteriorating. Sometimes she is acutely aware of missing pieces of her memory. Sometimes she is unaware. When awareness comes occasionally we hug and deteriorate into tears for a bit. We contemplate the next steps of our journey. We take time to feel a bit sad to realize the journey is becoming harder to do. The steps are harder to take.

It is hard to remain upbeat. It is okay to cry occasionally and let the emotion out.

I admire those who are able to remain upbeat. Parkinson’s disease sucks!

Carpe Diem.