Pizza Tuesday

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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

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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

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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

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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

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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.

This Morning there came a Little Girl

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Cheryl got up very early this morning. I expected that but hoped for not.

Today we had an early eye exam. It is time for that once a year what is up with your eyeballs visit to the eye guy.

I angrily got up to get some breakfast for her but before that she was talking to someone. An apparition standing in front of her she described as a small girl.

After breakfast she walked into the bedroom several times. I asked her what was she looking for; could I help her to find something? She replied that she was looking for that woman who takes care of the little girl to find out what she – the little girl – might want for breakfast.

As the day moved on and her meds kicked in the apparition faded but Cheryl was angry that I did not believe her.

I believed her and I told her so. I merely could not see the girl.

An update; this evening Cheryl asked me if I saw that other woman tonight when we were sitting in the theater (living room). I answered no I did not but I was not paying attention to the other people. Cheryl said that she wanted to apologize for not talking to her about the little girl this morning.

There is some longevity to the dreamlike hallucinations.

This disease of Parkinson is relentless.

Carpe Diem.

Extra Shadings

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Things rarely are as simple as they seem. Life is not binary nor tertiary. It has many more shades than that. Many more colors exist.

How do we perceive color in the world and what is its importance? There seems to be no physiological construct to perceive color in our eye. Are we able to detect minute variation in frequency of light waves? And our brain says – wait a minute that photon was faster, or slower.

Some are color blind but what does that actually mean? Are we not all color blind to some degree?

The girl in the control booth says fade to black. Is that a color? Why not say fade to white?

An analog world of life has nuance. It is not binary nor tertiary. It is a rainbow.

#RDP, #Nuance

We did Cards Today

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I have written about this in the past. Cheryl has taken over the task of writing birthday, anniversary and other occasion cards to the family. Her mother used to do this and in Elaine’s later years, Cheryl helped her. Today, we did cards.

A Bit of a Crisis

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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.

A fun trip to CA

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My daughter gave me a gift I may never be able to fully appreciate. In many ways I feel refreshed. I had not realized or believed how important it is for someone caring for another who has a chronic disease to be able to get away from that situation for a bit. It took a couple days for me to relax. My daughter somehow knew this and sort of pushed me into it.

Way back at the beginning of Spring I was two weeks past my second vaccination dose. I called my sister in Portland, Oregon whom I had not seen in person for about five years and asked, “What are you doing the end of April?” I explained the whole vaccination scenario. She was vaccinated also and over the past few months we had discussed traveling the countryside and having a hug tour. She has a very good friend in Florida and they got together about once a year somewhere. She had not been with Phyllis in awhile.

She suggested meeting up in Sacramento CA to visit for a bit, drink a little wine and attend our nephew’s wedding. What a great idea!

Last week I headed West to visit.

Over the course of several telephone conversations Joyce and settled on a little inn located in Freeport, California called Freeport Wine Country Inn. This turned out to be an ideal location for site seeing, wine drinking and visiting. It is a little inn with ten rooms and a bistro which was not officially open when we were there but probably is as I write this. California was not officially open yet, Gavin did not have his big announcement until the following week but the population was pushing in that direction. Next door is the Freeport Bar & Grill. An excellent location for drinks and dinner. Breakfast is available at the golf course on the other side of the Bar & Grill but we found the Cafe Latte about a mile up the road on Friday morning and went there everyday afterward. Overall neither of us had any complaints about our accommodations.

The Freeport Inn is a very low key relaxed inn run by Marnie and John. I recommend it to everyone. Across the street (Freeport blvd.) and up the levee is the Sacramento River and nice walking/biking path (albeit gravel) on an old railroad track. About six miles north on Freeport Boulevard is the California State Capitol building and gardens.

The picture at the top of this post was taken by Jeff Hook. Most pictures of the Sacramento skyline show this lift bridge across the Sacramento river. It is on the other end of Mall Blvd. from the capitol building. Few show the state capitol building.

We traveled to Pittsburg for dim sum with the nephews one day. We traveled to Lodi another day to Stama Winery and Dancing Fox Winery for a little tasting and lunch. South Lake Tahoe made the agenda on the third day with lunch obtained from a sandwich shop and an empty picnic table facing the lake only made more perfect by a younger Hispanic woman cooking on a grill nearby for mom and dad and the rest of her family. It smelled heavenly.

The wedding happened on Sunday in the afternoon between two very happy people who seem very much in love.

Joyce and I parted ways reluctantly at the rental car return. At Sacramento International Airport there are two terminals and as near as I could tell there was no transport between them without leaving the secure area. Bummer. We were early for our flights. I was because Joyce was driving and her plane left about an hour before mine. Joyce was early because that’s the way she rolls. Sitting for a bit at the departure gate with a sandwich and a bottle of water, my phone played its little text message tune. My flight would probably be late into Dallas-Ft. Worth were I had to make a connecting flight. I settled in with my book to wait for what the rest of the day would bring.

Carpe week-em! If someone offers to keep track of your loved one for a bit while you travel and hang out, take it! Do not feel guilty. Two things will happen, that person will understand better what you have been dealing with and you will get some time off from a burden that you accepted gracefully but had no knowledge of how much it would narrow your world when you started.

It is called respite for a reason. My daughter kept a little journal of activities and gave it to me when I got home. We exchanged a lot of text messages in between and I called every day but she was with Mom.

The trip home was amusing but I did not concern myself with things I had no control over. This is something PD has taught me over the years.

Carpe Diem, baby!