memories

Children are a Joy

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Even at somber occasions like funerals kids are a joy to the heart.

Verna’s funeral was today. (Cheryl’s cousin) Visitation was in church before the mass. Children playing hide and seek before mass in amongst the pews seems irreverent to many adults but not to me. The joy in their hearts shouldn’t be squashed or demeaned in any way. Some were wearing kitty ears. Some were wearing pigtails. All were dressed in their Sunday best because they were going to great Grandma’s funeral.

Funerals can be sad but not with kids around. One little guy spotted his Nana. He went to visit and scored a bag of fruit snacks. Nana is good for a treat. The same little guy needed the restroom in the middle of mass and upon the return decided to get back as fast as he could to Daddy. His father smiled and laughed with him when he returned. (Mom was more somber.)

Roman Catholic funeral mass liturgy is full of hope. There is a format but less ritual. The opening hymn was “Morning has Broken“. It is a good one full of hope and cheeriness. I always will hear Cat Stevens’ (Yusaf Islam) beautiful rendition of it in my head and because I like his music, the music of my youth, I know all the words.

Verna’s son, in his eulogy remarks, commented that someone had told him that he was now an orphan. I suppose one could say that since both of his parents had passed from this life but looking around the church full of family, children, grandchildren and friends, it seemed a poor term to describe this part of his journey through life.

Cheryl found and met with a couple cousins she had not seen for years.

She is making the snicker-doodles we started last night.

Carpe Diem.

A Great Time

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We went out with friends to a new restaurant. We had to be seated on the second floor. There was a ladies room on the second floor.

What a relief it was to us both.

Not the most appropriate opening to a story about going out to dinner with friends but parkinson makes the very small things in life into major obstacles. Those need not be obstacles but they can win out in the “Is it hard? v. Is it easy?” tug-of-war that enters the discussion whenever any social activity happens.

I have written about women’s restrooms and some of those experiences. This is not a blog post about that. This is a story about how truly graceful are friends that Cheryl and I have in our life and have had for half a century. It starts with an email from Jan in early December proposing that we gather for dinner somewhere for our annual holiday gathering. Cheryl used to refer to this group as the defunct bridge group because although we used to play bridge at our gatherings, over time we simply gathered for a meal and socialization.

Jan suggested a few dates in January and suggested collecting at her house or a restaurant somewhere. I immediately voted for a restaurant somewhere for two reasons; it puts the eventual clean-up in someone else’s bailiwick, it gets Cheryl into a social situation were she does not believe she is a burden to anyone. (Grace on Cheryl’s part, she does not want to be a burden.) And besides, Gary and Jan go to restaurants that we might never pick just because of unfamiliarity. She picked the Purple Poulet in Newport Kentucky.

In a later email after Jan had confirmed the reservation, she wrote that we would be seated upstairs and asked if that would be a problem to anyone (grace – Jan did not single us out). I did not respond to her email because upstairs by itself is unimportant. It does tell me what equipment I might need. It also tells me that I need to call the restaurant to understand restroom facilities which I did not do. (no grace for me) Somehow with our narrow life activities, I never got around to calling the Purple Poulet and asking about ladies restrooms. I am not shy about that idea merely incompetent in this instance.

Yesterday was January 20th, the day that had been previously selected for our dinner gathering. Sherry called to ask if we would like to come to her house late in the afternoon for a drink and we would leave from her house to go to the restaurant which was a thirty minute drive through the center of town. (Grace on Sherry’s part for offering extra time to socialize and catch up.) Sherry has a sister who also has parkinson as a part of her life. Her sister is living in an institutionalized setting but Sherry spends a good amount of her time there. Cheryl is comfortable in conversation with Sherry and Sherry understands Cheryl’s difficulty with mobility and mental agility.

After I accepted Sherry’s invitation, we discussed restaurant steps, parking arrangements and restrooms facilities and, oh bye the way, if steps and restrooms were a problem, why did I not speak up? (She left out – you fool!) Sherry is too polite for that last part. She did start dialing the phone. Pretty soon it was all settled. We would meet at her house and ride to the restaurant in Gary’s GMC Acadia. (Grace to Gary and Sherry.) Sherry suggested that if the Ladies was downstairs which was my fear, we would just deal with it at arrival. (More grace to Sherry – her words – I’ll just tell Cheryl I have to go and we’ll go together when we get there.)

I managed to get Cheryl to Sherry’s house before everyone so that I could put our car deep into her driveway and out of the way. I was successful and the evening was all set. Denny and Katy arrived a few minutes after us. Gary and Jan arrived shortly thereafter. Sherry had drinks and snacks. For an hour or so we were surrounded by just friends not Parkinson. What a relief it was to us both.

It is not often that we acknowledge the kindness and graciousness in our life. There is no excuse for that. Many explanations but no excuse. This group of friends surrounded us with love and kindness and helpfulness and grace. For a few hours we, Cheryl and I, could just be. (Thank you, all.)

About the Purple Poulet; I linked their website to the first mention of them above. For me at least and I think Cheryl would agree it was a great dining experience. The restroom on the second floor was marked Ladies on the door near our table but was in fact a well appointed handicapped restroom. I have been in many. I know.

The steps turned twice and had handrails on both sides. If there is no elevator the next best thing is handrails on both side of the steps and a gentle slope to the stairway. Up is never a problem for Cheryl. Down, however, is a perceptual problem as well as a physical one. A short gentle run of steps is much less intimidating than a long or steep straight run. (grace to the stairway designer.) I have not gone down a set of steps with Cheryl forward for many years. (Sherry managed the walker while I was helping Cheryl manage the steps down – grace to Sherry.)

We both had their chicken. On their website they claim “The Best Fried Chicken by Southern Living” – It was the best fried chicken I have had in quite awhile.

This morning Cheryl is still sleeping. I am not but I should have skipped that second glass of Robt. Mondavi that I allowed myself because I was not driving to and from the restaurant. (no grace to me – grace to Gary for driving)

Carpe – the best fried chicken – Diem.

And surrounded by grace is another reason to stay connected.

Grace to you, Denny, Katy, Jan, Sherry and Gary for letting us simply be us.

Pizza Tuesday

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An old tradition of ours is pizza Tuesday. I know. I know it is supposed to be taco Tuesday but neither of us are super huge fans of tacos. Although if we wind up at a Mexican restaurant and there are some very good ones in the Cincinnati area, Cheryl will order tacos. Some of the Hello Fresh meals are Latin American in flavors. Neither of us grew up with that but the La Rosa family has been in business for sometime and some scenes from the Rain Man use Pompellio’s as back drop. Sorry I have digressed again.

We used to frequent a small pizza joint nearby (run by a family of German dissent or Latvian if the spelling is different) that we liked. We tried several nights during the week and ultimately landed on Tuesday as the least crowded. It stuck. Over time it became “Anything Goes Pizza Tuesday” because sometimes one would rather have a hoagie or a hero sandwich or a calzone or maybe just a salad. Cheryl did not care as long as there was pepperoni somewhere. The only exception being a steak hoagie sandwich reminiscent of Pasquale’s. Sadly, the Pasquale’s of our childhood is no longer.

Lately we have moved Anything-Goes-Pizza-Tuesday to a newer use of an old italian restaurant near where we live. They opened just before the pandemonium and we supported them with carry out orders during the shutdown.

Pizza Tuesday has developed into a social affair with friends and neighbors. Sometimes Cheryl’s family shows up. Sometimes anything goes.

On this particular night Cheryl’s cousin Donna showed up. We had been trying to get together and on a whim I called her and invited her to Strong’s Brick Oven Pizzeria. She came. My cousin’s widow, Linda showed up. We had a great conversation. We got home later than we usually did. Sadly, we had no leftovers and that is too bad.

It was a time to connect and make new connections. The pizza Tuesday reminder list is getting longer. Cheryl had a good time and told stories.

Carpe pizza Tuesday Diem.

Inspiration in Song and Poetry

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I often find hope and inspiration in song and poetry. Today while reading blogs of others I tripped over this from Filosofa’s Word. Kermit and his rainbow song.

To me and I suppose many, poetry and song are the same thing. A song with a melody that is catchy enables a poor poem to live. A sweet expressive poem often needs no accompaniment. Sometimes the music is first and inspires the poem. Sometimes the poem is first and inspires the melody.

A favorite poem Desiderata sort of sums up life. It has no metre. It follows a prose format. I find it to be calming to my heart. I have not read it for a while but reading Jill’s blog page about caused me to do that today.

Carpe Diem and keep connected to everyone around you.

New Year’s Day

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We had a great visit from all the kids and many of the grandkids. On New Year’s Eve I spontaneously asked our children if they had anything special planned for New Year’s Day. I asked if not would they like to gather around our table for a meal in the afternoon. I suggested about 4-ish. They all said yes.

I stole this idea from Frank C. Church. Thank you, Frank for a spontaneously good time.

Who can tell? Maybe a new family tradition? Traditions have to start somewhere. They are kept up if everyone has a good time participating. Zachary certainly had a good time. He had not seen grandma’s marble race before so Mom and Gavin helped him put it together.

Most importantly Cheryl got to have everyone at her house. She smiled and laughed at the conversation and activity. It was simply wonderful to see her smile.

Her smile and laughter are less as we head on our journey of Parkinson. Yesterday was very special to her and to me.

Carpe Diem. And don’t forget to connect!

Merry Christmas

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In this season of happy and family and celebration, after I have gotten through all the wrapping and cookie making and other organizational tasks, I slow to take stock of the year. Good things happened and not so good things happened but mostly this year was. It is in the past now.

Throughout this year Facebook is a personal source of joy, amusement, interest, empathy and puzzlement. When some political whiny rant appears, I am puzzled by the things total strangers will say to others that they would not say in person. I am filled with joy at the pictures of children both young and old. I am amused by the various MEME cards that folks post, sometimes without thinking. I am interested in other care giver’s thoughts as they travel down their road of Parkinson. And I am empathetic to their particular struggles. In this collage of pictures selected in no particular sequence are pictures of things, people and MEMEs that appeared on Facebook during the past year and I downloaded to my tablet as I watched the TV news and waited for Cheryl to wake up.

The good things

  • The joy in Zachary’s face. He always makes me smile.
  • Luke’s artistic muses in photography
  • Family
  • family gatherings
  • Max is off to Miami University — I am class of ’72
  • Laurencia is 21!
  • Cindy Smith
  • Linda Weisgerber
  • Kathy Mellen
  • Mary Jo Horton
  • Jane Pohlman
  • Parkinson Community Fitness
  • UC Health
  • Jeff and Stephanie’s ELFie – Elizabeth Laura Fisher
  • Zane and Charlotte
  • Lydia (think songs from the Music man)
  • Anniversaries
  • Anna’s 50th birthday (I love you)
  • trips and vacations
  • New people in our lives
  • Looking back and memories
  • Learning how to make cookies
  • Sr. Carren and Nancy Strapp
  • Visits from friends of Cheryl
  • Phone calls to Cheryl from her friends
  • Special friends
  • small faces and their happiness
  • Jana Ann
  • The class I took on being a good care partner (Linda stayed with Cheryl so I could go.)
  • A new found interest in cookies and muffins
  • Finding out that adjusting meds, schedules and eating has reduced Cheryl’s upset stomach to non-existent almost. (and the neurologist MDS says bravo.)
  • Lunch with Marilyn

The not so good things

  • Constant reminder of Parkinson
  • Anna’s Fiftieth birthday (wow, I am old.)
  • Cheryl’s lost memory
  • Learning how to make cookies (there have been disasters.)
  • Cheryl’s worsening confusion in the evening
  • dementia in all its forms – delusion, hallucination, Capgras, sundowner, showtime
  • frost on the window (I have never been a big fan of winter)
  • avocados
  • Cheryl wanting to talk (call) to her mother in the evening (which worries me – I think – unnecessarily.)
  • Late night punding in her office

These are both incomplete lists. However the good list is already way longer than the not so good list. (And a couple of those are tongue-in-cheek jokes.) I constantly try to turn away from letting Parkinson and dementia drive our life.

I will probably add to these lists during the holiday down time.

Carpe Merry Christmas Diem.

A Nice Dinner

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We went to one of our favorite places to eat dinner tonight. Friday night with my girlfriend, best friend, lover, mother of our children and life companion. It was a good time. Christmas decorations are everywhere. People are visiting and gathering for the holidays. Bacall’s Cafe was loud. It was full of us old people chatting and eating and drinking and gathering. We were all catching up with each other and the world.

It seems to me that the smaller local restaurants have better service. Those restaurants seem to provide employment to the youngsters in the neighborhood.

Friday night has a special atmosphere. It always has for us. When we were younger and still working full time for others, it marks the end of commitments for the week. Often Cheryl and I would meet for a quiet dinner somewhere. Just us and our conversation was a special time to relax and take stock of things. When the kids were small Friday was often chaos. But those years passed by too fast and it was just us again.

These days I think that it is important to stay with her in her remembrances. If she wants to talk about long ago I try to stay with it. But I also try to gently steer her to the present if she has strayed far off the road. As we were driving to the cafe she asked me where I wanted to celebrate my birthday next week. — Her deceased father’s birthday is next week and her brothers had been talking about meeting for dinner somewhere to commemorate that event.

I am still on a learning curve with this sort of conversation but I calmly reminded her who I am and reiterated the conversation about celebrating her dad’s birthday. I switched the conversation to where do you think we should go? She switched it back to I wonder where Dad would go if he was here. And we went down that road for a bit until we arrived at the cafe.

AHA: Preserve any routines you can. Embrace any memories she has. Calmly help her find her way back to the here and now. Emphasis on calmly and watch the pitch and tenor of your voice.

Date nights are not always for the young. We had a long wandering conversation about the place we were eating. We talked about other places we have been. We talked about family. She had a coke. Years ago it would have been a glass of rose or white zinfandel. I had a gin and tonic. Years ago it might have been a nice single malt scotch. As we have aged we both like sweeter things. It was a good time.

As we were getting into the car for the drive home, one of her old time friends, Donna, called my phone. I almost did not answer. Robo-calls are annoying. Donna had gotten my number from one of Cheryl’s friends that she had met in church. She called to get together for lunch one day after the holidays. A new conversation about Donna happened on the way home. We will have lunch somewhere in a couple weeks.

Carpe date night Diem.

With This Ring

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With this ring I thee wed. It was a long time ago and I do not remember the actual wording of our vows as I slid the wedding band on her finger. Lately she has the delusion that her wedding band belonged to her deceased sister Janice and was give given to her by her mother for safe keeping. Last evening she told me that she wanted to give it to her sister’s granddaughter.

Stories and delusional narratives like this that she makes up out of whole cloth disturb me. And, at the same time, they are very interesting to me. They are a kind of window into her confused mind.

In the past few months, Janice, is on her mind a lot. She talks to her in her sleep. She talks to her in her head during the day. She will find an old photo of Eric or Kevin and remember Jan. At night if I awaken her when I visit the bathroom, she might say, “Jan, what’s going on?”

She mixes up her sister Nancy with Janice. Nancy was very close to Janice in life. That thought mingles the two sisters in her current mind.

Occasionally she will say to me, I should call Jan and see how she is doing but I don’t know her number so I’ll call Mom first. With people dealing with dementia and confusion the experts say to go with the conversation and accept what the delusion may be at the moment. I do mostly but I avoid promotion or continuation of a mistruth. I respond with, “Think about Jan for a minute” and she will say, “oh, yeah she’s gone isn’t she?” To which I respond yes, she is but you can still talk to her in your head. You can say Hi to your Mom too. (I always worry that it will make her sad. It does not seem to do that. She seems calm with the fact that she remembers her mother and sister’s passing.)

She brought me this photograph last night that she had found in her office. Her little note “Hoo? is this” made me chuckle. I still have that Hilton Head hat and occasionally wear it in the summertime. That is her shoulder off the left of her posty note. I have a gray mustache but Cheryl’s hair is still brown. I put it on my desk to look at and remind me where we are on this road.

I have no idea who took the picture. the print date on the back is June of 2006, so, it is pre-parkinson and his damned disease.

After we had been married twenty-five years we gave each other new wedding bands to commemorate the occasion. The inscription reads Cheryl to Paul 8-29-70/95 on mine. (This is so I would not forget our wedding date. We met on the 30th of August, so, I always have had a little mental confusion about the date.) Twenty-five years down the road her fingers were more robust as were mine.

Our 25th commemorative bands are larger. About a year ago she complained that her wedding band would simply fall off her finger and she wanted to get a chain to put it on to wear around her neck like a necklace. I took her to the jeweler and we found a chain. She later discovered her original wedding band and found that it fit again after losing Parkinson weight. She has been wearing it for many months.

In the past couple days she believes it to be Jan’s wedding ring.

Carpe Diem.

Janice

Christmas Memories

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From Cheryl on December 27, 2021:

Every time members of our family get together, we have lots of fun. We don’t need board games or card games.  We remember    lots of events, and those memories breed  more memories. Most of the time, the memories are triggered by a long-lost photo that we find when getting out the Christmas decorations. For instance, there is a memory I have that I have told many times over the years– it’s a good memory.  I was probably 4 years old and Jan was probably 2 years old, and she had curly blond hair.  I had straight brown hair.  Mom wanted me to have curly hair.  It was Christmas eve.  Jan and I were supposed to take a nap. Mom used some metal curlers to curl my hair for the occasion. Then she put Jan and me to bed  in Mom and Dad’s bed. At the time, their bedroom was separated from the living room by a set of  sliding pocket doors. So Jan and I were told to go to sleep. Jan went to sleep almost right away, while I tossed and turned…wide awake!  In the pocket doors there were a couple of key holes that were just high enough in the doors for me to look through.  So, of course I peeked in, and there, across from the door, was a  doll-size table and chairs, with a babydoll sitting on each chair! I just stood there staring at my new toys. Then suddenly Mom opened the door   right in front of me.  Then Mom gently scolded me, and told me to get back in bed. She said that Santa was in the kitchen, and he wouldn’t be happy if he saw that I was awake. I went right back to bed and kept quiet until it was time for supper. This is one of my fondest Christmas memories. 

Her short term memories are virtually gone and yet she can write these amazing stories from her childhood. This is from about a year ago. she sent it to me in an email. She has almost no use of her computer these days. She does not know how to turn it on.

I am embarking on a global search of stories like this from her.

Carpe Diem and save the memories as best you can.

Black Friday

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This is a term associated with the Friday after Thanksgiving Day. (2022) We had been at Anna’s house. Anna hosted. Almost everyone was there. Cheryl sat at the end of the table near Anna. Anna read a wonderful prayer. I sat at the other end of the table near Scott and Gavin. A great meal surrounded by family was enjoyed by everyone.

Today – black Friday – Cheryl was a little down this morning after breakfast. She talked about not understanding what was going on about her yesterday.

She did not remember that she had forgotten being there last night as we went to bed and I talked about the meal and conversation at Anna’s house. — Last night as she was crawling into bed she asked about going to Anna’s house for Thanksgiving dinner. Without thinking I responded with we were there all afternoon. Do you not remember having dinner at Anna’s? Luke had really long hair. She became upset. She could not find that memory and it seemed that for a moment it terrified her. (I knew immediately I had made a terrible mistake of assuming she knew.)

She talked about “losing her mind” this morning. She talked about her granddaughters who were sitting all around her not understanding the surroundings. We had another moment were we sat for a minute to recognize the changes in her memory and cognition. (I am losing her more and more and she recognizes that and it makes us both sad.)

Thank you Lord for the moments we both still have. Even if we cannot remember.

Carpe Diem.