Happyness

Emotion is often Close to the Surface

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Cheryl carries her emotions close to the surface. It seems more so lately. When we received this thank you card today from a great-niece, she was very excited to hear from her. Ally thank you for being so considerate of your great Aunt Cheryl. I responded to her.

Dear Ally,

Thank you so much for the thank you note and response to our graduation gift. We wish you well in your new career. Can you tell us a little bit about that? What took you to Austin?

As for your questions, the Covid crisis (I prefer pandemonium) in many ways has passed us by. We were vaccinated in January and February at U. C. Health here in Cincinnati. They made it very easy by creating a drive through clinic in the garage of the building that houses Cheryl’s neurologist. In Cheryl’s case they sent her an email notifying her her upcoming appointment with her neurology group and she should make an appointment to get the vaccine by July – and oh by the way here’s a button to click on to set that up. 🙂 She was fully inoculated with the Pfizer vaccine before the end of January. It took me a few weeks longer because I had to set up being a patient at U. C. Health first and then had to wait for a slot to open up but I got both doses by mid-February.

Parkinson’s disease is great practice for staying isolated. Often Cheryl really does not want to do anything. Sometimes I have to push her to get going. She has an exercise class on both Tuesday and Thursday that is oriented towards Parkinson’s patients.

I do not know how much you know about Parkinson’s but it is more than just the jiggly motion with which you may be familiar. Michael J. Fox and his foundation provides a great deal of information and a great deal of money for research. Unfortunately there is no cure (yet) and the disease itself is degenerative. It affects everyone differently. Cheryl’s mobility is generally good with medication but in her case the disease is affecting her cognition and memory. She used to be a whiz at computer databases but now struggles with opening email. 😦

With your graduation card, I suspect she sent it to your grand mother. Cheryl often mistakes who is living with whom and who belongs to which family. I often have found myself correcting that information but it is a never ending task. It is tricky to keep track of your own stuff and someone else’s stuff too. 🙂

If you are interested I whine a bit and muse about things as they are in my life on my little WordPress blog [ www.adjunctwizard.com]. I have discovered over time that your grandfather and I think a lot alike. I did not realize that until a few months before he passed away. I am glad I was able to visit him before that happened. Sometimes I wish that we had been closer when he was alive.

Cheryl’s sister Janice who also lived in Florida passed away from Covid in August of last year. So, the pandemonium has touched our family closely.

We wish you well in your new life. Keep in touch and stay safe.

Best Regards and Godspeed,

Stay safe and be well Ally. May the road always rise up to meet your feet, May the wind always be at your back. Godspeed, young one.

Carpe Diem.

Lots of Little Things have Gone Away – a Lament

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MINTS– For years and years and years Cheryl’s favorite candy was peppermint.  She liked it in most any form but we always and still do have a glass candy jar with peppermint lozenges (losengers is how she says it). She no longer eats these.  We used to buy big bags of them at Sam’s Club and later we found that we could buy them in bulk at another store. We do not buy them any more because she no longer eats these.

After eating at Skyline Chili restaurant we still get York peppermint patties. We used to also get these at Sam’s Club but Sam’s is closed near us. I buy the stuff we used to get at Sam’s Club from Boxed Up online now. I have not looked for peppermint or York patties online at Boxed because she does not eat them anymore. I am not fond of peppermint.

pancakes – I am a big fan of pancakes. Blueberry pancakes, chocolate chip pancakes, fruit pancakes, it does not matter, all pancakes are good things. Pancakes are better when you do not have to make them. It is better to show up and eat.

For awhile I made pancakes for breakfast two or three times a week. Perhaps I overwhelmed Cheryl with pancakes for breakfast. For a long time when I suggested pancakes she responded that she would rather have cereal.

I am not fond of cereal except hot cereal. I am a big fan of grits and oatmeal if the oatmeal has been helped out with dried fruit and cinnamon. Grits are good anyway they come but cheddar cheese really enhances the experience. Shrimp and grits is just heaven in a bowl.

Lately we have been having pancakes again. Today we had scrambled eggs and toast.

calendar – The calendar seems to have lost its meaningfulness. All though our married life we have had a family calendar to record events. With great ceremony the new calendar is lain on the dining room table in the week between The Christmas and New Year holiday. Known events such as birthdays and anniversaries are individually recorded. Regular meetings are noted as well. Any doctor appointments and such are added. When January first comes around the new calendar replaces the old one on the bulletin board of important stuff and restaurant take out menus.

In the past year or so Cheryl has developed a kind of date dyslexia. The calendar has little meaning for her. Not only is she unsure of the day week but she is unsure of the week itself and how long a month is. I noticed this when she wanted to send birthday cards out for the following month earlier and earlier. One month she sent them out so early that she forgot she had sent them. People towards the end of the month got two and in one case three. I started helping with her birthday card scheme. It sometimes works. She is not very accepting of any method that I create to help. It has to be her scheme. We develop a new scheme each month which is not a satisfactory solution.

HOME – When do you think we will go home? I point out that we are home. Yes, I know we are home but when will we go home? – she says. I have always thought to myself that my sense of home is merely being with her. This thought occurred to me many years ago. These days, since she is on and off unsure of where home is, I think that I am a bit unsure of that myself. I detect her slipping away and that causes caregiver anxiety. Where will home be later?

DECISION – “trying to decide” is a phrase she uses when looking for earrings. Unfortunately in her current state it is a very hard task. This has been true of most of our married life. These days with Parkinson adding a factor of confusion, the deciding is measurably harder.

Overall maybe none of these actually matters but it is very hard as a giver of care. I knew Cheryl during her robust working years. For a couple decades or so after the kids where grown and on their own we focused on career, social life, travel. For several years she supported me while I worked to complete my M. Ed. and find a teaching job. We enjoyed it. Those years were for us. We have no regrets.

These years are ours to enjoy or not. It is our choice.

Carpe Diem. Godspeed to us.

51 Years Today

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Today is our 51st wedding anniversary. I took as many of the kids and grand kids as could make it out to dinner yesterday evening to celebrate. It was a very nice meal. Cheryl told me she was grateful to everyone who was able to come and she had a great time. Later when it was time to go to bed she wished me a happy birthday. She said in all the confusion and celebration she had forgotten to do that. I thanked her.

Several weeks ago in early July she gave me this note. She was listing cards to buy at the time and she realized from her notes that our wedding anniversary was coming up in August. I remember on that evening a few weeks back that she was very proud of herself. Her math was still working. I just smiled and agreed with her and kept this note. I think I will always keep it.

We met 55 years ago on a blind date tomorrow. We were married 51 years ago today. It was as HOT day. It was August in Ohio.

Although life could be better if Cheryl did not have Parkinson’s disease, I would not have missed one day of our life together. Happy Anniversary to us!

Carpe Diem.

Every day is a winding road, enjoy the ride.

Last Night it was Bacall’s Cafe

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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

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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.

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

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

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!