Holidays

Christmas Season 2023

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(A beginning of a new life and the ending of an old one.)

This holiday season marks the beginning of a new phase in our life. “We’re in this love together” popped up on the Spotify playlist as I started to write my thoughts. Cheryl and I are in this love together and forever.

For the past few weeks I have been organizing, sorting and cleaning our living space. I have gotten rid of multiple copies of old emails and address lists. I have meticulously gone through rubber banded stacks of old Christmas cards and retrieved pictures, snapshots and photographs. The work has been tiring and emotionally draining. Old photos bring back fond memories and nostalgic remembrances of good times. And some old photos do not. Those photographs distract me into detective mode. (Who is that person? Why were we there?) Even with those questions hovering in the background of my mind I think, look how young we were once. How did we get here?

This year has been a tumultuous one with both love and mental chaos, physical challenges, extra equipment and extra medical help as Cheryl’s Parkinson and dementia seemed to overwhelm her and me. Her good days became fewer. Now, today, Thursday, December 28th, my sister Laura’s birthday, Cheryl is staying in the Harbor memory care section of Bridgeway Pointe. How we got here is a story about the agonizingly slow progression of Parkinson’s disease and the mental toll it takes on many of its victims. It is also a story of how it slowly came to me that although I thought my love could conquer all, there is strong evidence that extra hands and expertise were needed. It is a story for another day.

This holiday period is very different. About two weeks before the Thanksgiving Day holiday Cheryl moved into the Harbor. A week and a half later as I took her to David’s house for Thanksgiving dinner, she was resistant to getting out of Bridgeway Pointe to go to David’s house. After that experience I told the kids and extended family that any more celebrations we had to take to Cheryl. We should not expect her to go to them. (It is too hard for her and for her husband.) Cheryl had settled into Bridgeway Pointe in a fashion that I had not expected.

The rest of the holiday dinners and celebrations I attended without Cheryl by my side. I visit Cheryl every day. The kids visit on many days. Her brothers and sisters and friends visit when they can. It is different. I do not know what I was expecting or what I want it to be, all that I know is, that it is different. There is something missing for me at the celebrations. I think that something is Cheryl’s spirit, her smile, her glee watching the kids open presents, catching up on family or simply delight in the moment. “Don’t it always seem to go that you don’t know what you got ‘til it’s gone?” – these words are from an old song.

From here at this moment in time we begin anew. I do not know what our new life will bring but it will be better for us.

Carpe Diem.

Grandkids and Influence

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I seems to me as I go through life I do not know where little things that influence my thinking and move me in a different direction will come from.

When she was a very small child and it seemed barely able to speak, my son and his family including our granddaughter, Regan came to visit one day. Grandpaw (me) was sitting on the front porch enjoying a cigar and probably a beer. Regan looked up at me with her beautiful 2 year old face and stated, “You know grampa, that is very unhealthy!” She was right of course so I quit smoking. Not right away it took a couple years and I still miss having a cigar now and then. My grandfather smoked cigars and I thought they smelled good. Cigar smoke reminds me of him, I suppose.

These days I have been moping around with no Christmas spirit or interest in the holidays for that matter. Cheryl was always the driving force behind our Christmas celebrations. The past couple years I was tasked with the shopping duties for the grandkids. Since I consider myself to be a lazy shopper but efficient, I texted the kiddos and asked them for ideas about what they thought they might want for Christmas. Often I did not hear back from Maxwell. This year without asking I heard from him first. He bumped me out of my morose humbug thoughts about Christmas, the holidays, gift giving and the rest of it.

Thanks, Max. Thanks for getting me out of my sadness. It is maybe not completely gone but I am moving in a different direction. And sure, if you want that, I will get it for you. Merry Christmas!

Carpe Diem.

If She Was Home

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If Cheryl was home with me she would be on my case to get the tree up and drag in the decorations. I do not have the enthusiasm for that activity that she has (had?) every year. I wondered this morning if I really wanted to do that at all. I am gaining an understanding for why many who have lost people that they love deeply may not have as much enthusiasm for the holidays.

I will eventually put the tree up when I think I will be able to do that without tears coming to my eyes.

And that brings up a new/old theme I have not written much about. For the past year I have listened to a lot of instrumental jazz music. New age, Smooth jazz that has no ties or memories from my youth. It is soothing and calming. I suppose I have become a fan of elevator background music.

All the other music that Cheryl and I listened to, her tastes are much different than mine, I like rock, she likes big band standards. I like classical and opera and ballet. She does not. Nevertheless, much of that other music awakens memories and nostalgia. It is hard to see through the watery tears, so, I do not play it as much as I used to play it for myself.

So far, I have my Christmas tree on this blog. These are last years pictures of the tree but the Christmas cactus has opened its blooms for this year. I moved it away from the window that it was shining its beauty out of. And I have reread last December’s blog posts. (deep sigh here.) things have not improved.

This is a selfie from yesterday’s visit.

Carpe Diem

Easter

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Yesterday (a few days ago actually) was Easter Sunday. Like many families we gathered to celebrate it and simply be together.

Grandpa made a ham and all the kids showed up with food and drinks to provide sustenance.

All of the grandchildren, save one, are teenagers or older anxious to get onto their lives. As I looked around the room and watched Cheryl light up and become mom for awhile I wondered who they would all turn out to be.

The oldest soon to be graduated from the university will remain in the same city. After having accepted a position with a business consulting firm there, apartment hunting is the main concern. Frugality seems the overriding criteria although location is also important. There is a gap between starting the new job and commencement at the university so there is time for vacation with family and trips with friends before starting the new career. This time of life is exciting. It was for me. I can understand a little about how this grandchild is feeling. She was such a cute little one growing up. We have many great memories of her. I pray she will do well in life.

Her younger brother is in his first year of university. It is the transition year. He is looking for himself. He is attending classes at the same school that I was graduated from 50 years ago. The fact that he is attending my old school probably influences how I think about him. He will do fine in life if he becomes aware of other’s needs. He is attentive to his grandmother. I remind him when I get the chance to take classes in topics that he may be interested in. He is actually a pretty good family storyteller. He found some old videos from his family’s younger years and strung them together in a competent narrative. I suggested journalism might help with his nascent storytelling talent.

Behind him in age is a younger sister who after becoming an early reader and chocoholic like me, flashed by him in high school math classes. She ran through the math available at her high school and takes college level classes. She has learned to fly and is interested in attending the Air Force Academy in Colorado. Her mother wants her to have a backup plan if she does not get into the academy but I think her heart is set on Colorado. She is so young. Her entire life stretching before her. She is a wonderful dancer and a part of her high school’s competition dance team. She will accomplish her goals.

The baby sister in that same family is clever and crafty. She is a child that has been and is always interested in many things both arts and crafts. She has her own workroom in the basement of their house were she can pursue her interests without disturbance. She plays in her high school band and seems to love it. Just a few months from driving age and the freedom that driving yourself to activities and friend’s houses, she too has limitless horizons in front of her.

Her cousin is an avid swimmer and swims with his high school swim team. He is ahead of his younger sibling by eleven years in life. Their relationship is special. At grandma’s house he often sits quietly somewhere with his earbuds in, futzing with some game on his phone. Like many kids his age (and his Dad) he is an avid gamer. He does not isolate himself though, if you address him directly he responds. He has a couple more years until he needs to think about university or other. I hope he gets his driving license soon. I could hire him to take me places. He is a good student and will do well.

His tiny brother is eleven solar circuits behind him. His happy face lights up the room and makes my heart smile. Grandma got down on the floor to help with the marble track. Oh, to be young again.

Another grandson and the oldest of his family group is still searching for himself. He has come to the conclusion that driving pizzas for a living, although okay for now, is not a career goal. He is a wonderful photographer with a high skill for composition that I think he should pursue. But I am grandpa. I am not a counselor. He is still searching for his dream.

The only one of the grandchildren missing is his sister. She graduates from high school next month and has her sights set on a university in southern Ohio. She is president of her high school class, an avid volleyball player and has her sights set on bigger things. She will do well in life.

It was a wonderful visit and I hope a good time was had by all.

There is a sameness to our daily life with this disappointing disease of Sam Parkinson. On many of these days I am saddened by the fact that he described it but was unable to say, “Aha! Here is a cure.” Early on few have been able to describe all of the other features of the disease. From my perspective, preparation is a big part of success in future endeavors. All of these kids I have described know this. Some learned it early, some learned it later but all of them recognize preparation is important. I want to be prepared for what the future brings Cheryl and me. So many aspects of Parkinson disease are unknown. Every day is new. Every day is the same. Easter, however, was special. Most were here.

Carpe (lamenting the future) Diem.

Sometimes In The Evening

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Late in the evening when I am able to sit quietly and think about where we are with this parkinson thing I start to realize how it is affecting me. I ponder and think about how it is affecting her. Self -doubt pursues me everywhere.

As Cheryl’s confusion and memory lost develop into her dementia, I wonder if she is aware of her disability. I wonder if she knows about what is going on around her. I wonder is if she is scared. I know it scares me. She has always been self reliant. She often resists help. She makes me feel intrusive and yet I know her mind is awash in confusion. (Do I actually know that? Is that a misconception?)

Yesterday we had lunch with our daughter and talked about their family’s planned trip to Florida. We talked about the logistics of getting six differing schedules aligned for a family vacation. I thought it might be nice to go to there with them. I held Cheryl’s hand and asked her if she would like to do that. She was reluctant but interested in visiting with other family. (If we went along would we be a burden to Anna’s family and their time off vacationing together?)

My daughter pointed out to me that I keep track of Cheryl’s health like a hawk. She asked if I was keeping track of my own health. I think I am. But when I drift into deep discernment, meditation, prayer and thought, I am unsure. I think back to times when Cheryl and I went off together somewhere sometimes for a week or so, sometimes with friends we met up with, sometimes for a weekend alone with just us to entertain each other. Once Cheryl planned a special surprise for my birthday, all the kids and grandkids showed up – it was a well kept secret. These are all wonderful memories and it makes me long for those times. I makes me attracted to the idea of vacationing.

I think Anna was trying to tell me that a vacation would be good. I agree with that thought and in this part of my life and our marriage it would be useful if I was able to get away from the day to day care for Cheryl. Maybe it is time to give that away and return to simply being a husband.

A vacation from caring seems attractive.

As I write this and think about that aspect it lifts my heart. Worry and anxiety are easier to bear if there is occasional relief. I think I need to work on that sort of relief.

It is late in the morning now and she is gently snoring in the bedroom. This is one of those days when the day just seems to be slipping away. I begin to worry that she may not sleep tonight. I wonder how a professional caregiver would respond. I talked to her earlier when I put her meds in the bathroom for later. As I sat on the edge of the bed and comforted her a bit she fell asleep, so, I got up and left her to rest some more.

I am not surprised that she is sleeping late. Although she did not disturb me overnight I think she slept fitfully. I slept my normal get up to go to the bathroom every 2-3 hours. Occasionally she was whispering a list of people out loud as she thought through the planning of a family reunion style gathering that our sister-in-law has taken over but Cheryl cannot let go of in her mind. No amount of “Tari is handling that” relieves her from thinking about logistics. I often hope that Tari will spontaneously call and talk about it but I recognize that she probably will not. (I sent her a text message and requested her to call Cheryl. I will wait and see if she does.)

I mentioned – return to simply being a husband. I big part of that idea is not doing Cheryl’s things for her.

Many things wander through my thoughts as I checked on Cheryl again and got cleaned up, brushed my teeth (now the coffee tastes funny) and put on clothes for the day. I can hear my mother’s voice as she told me years ago, “I do some of my best sleeping in the morning.” When Mom was still alive if I visited her before noon, she might be just barely awake. Once or twice I made her breakfast and sat with her for awhile. I start seeing that happen with my wife. (I suppose I do not want that for us. I want us to be young and vibrant or, at least, think we are.)

I know that she wants to go to church services tonight. It is just before Easter. Easter is a big deal for Cheryl. She has been talking about coloring eggs for several weeks. I have extra eggs in case I cannot get out of doing that. It is getting late, so, as a husband I will get her up and listen to the complaint while I do that.

She is up now at 11 AM. I made her favorite breakfast of scrambled eggs and bacon with grape jelly toast. She told me that after she was done with breakfast she wanted to lie down again.

Carpe Diem.

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.

Back in the Olden Days

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Gift wrap at a department store was free for purchases from that store. The malls often had a bunch of girl scouts or boy scouts wrapping boxes and raising money for their troop. If you did not want to get stuff wrapped boxes were available from the department store. (With their logo)

That slowly faded away over time. It was part of the season and might still be there but I have not shopped in a department store for several years. Parkinson disease interlaced with dementia does not enable that to occur with ease. I lament that fact.

This year we did spend some time shopping at J C Penney. Cheryl has always liked Penney’s store. It is one of the few department store chains still surviving after Federated Department Stores sucked up many of the littler ones and became Macy’s. A couple days ago a nice gentleman gave us a couple coupons on the way in the door at J C Penney and bid us well as we began our shopping experience. Later when we had a bunch of carefully selected gifts piled onto Cheryl’s walker and headed to the front to purchase them, he saw us coming and as the line to check out was long he asked the woman staffing the cosmetics counter who was idle to check us out. She smiled and said sure she would do that.

As we approached the counter to do that another frantic old woman who had just come in the door barged in front of us and asked the cosmetic counter staff if she could “pay her bill here” because the line was too long to stand in.

Two things I have not thought about perhaps ever in my life; driving to the actual department store to make a minimum payment on an invoice that was sent to me via USPS, something that can be done by return mail and manifesting surprise at the length of the checkout line at 1 PM on a Sunday afternoon two weeks before Christmas. Perhaps she could not afford a stamp or did not have a stamp and the bill was due on Monday. This woman decided to chat with me about those things while the woman behind the counter opened a different computer to access the billing records and accept the $35 minimum payment on her J C Penney account and applied it to the customer’s Visa account. It is easy to understand how cash strapped elderly women get over their head in debt. (Sorry, that was unkind.) I did not chat. I merely stood silent and waited while Cheryl stood there looking tired.

Eventually the nitwit was gone and the cosmetic woman picked up our purchases on her counter and said, I need to get some larger shopping bags. She was gone for about 20 seconds. She checked us out and I helped put the stuff in the bags because she had very little space on her cosmetics counter.

We completed our purchase and I thanked the woman for allowing us to check out with her. She smiled. Perhaps no one had thanked her for helping them that day.

As we left the store I noticed that the long line had dissipated. I remarked about that to the gentleman who was still staffing the door passing out coupons. He smiled and wished us a good afternoon.

Carpe Christmas shopping Diem.

Easy Life with Grace

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It occurred to me this morning (early afternoon) as I was cleaning up the breakfast dishes that often we want our friends, lovers, significant others to be on our schedule. This is especially true if they rely on us for help. Cheryl has not been on my schedule for a long time. She is on parkie time.

Her dementia seems to have added a special aspect to her conception of time and place. Following instructions in a linear fashion is very hard for her to do. Even if you are not interested in doing what she has decided that she wants to do, it is simply easier to go along. It is actually able to steer the activity if you plan a little bit.

There are three things on Cheryl’s agenda for today; Christmas cards, snicker doodle cookies and a list of complaints for the doctor when we see him next week. For me it is merely laundry day. (But these are all things I will do in some part.)

I got up on my typical schedule at about 7:15 am or so. I figured out the Wordle but used up all of my guesses and got a “whew” for my effort. The morning news was not keeping my attention so I printed the address labels for the Christmas cards and placed them in a prominent spot on the dining room table. I made a boo-boo. More about this later.

At 9 am or so I finally encouraged Cheryl to get out of bed. She had gone to bed at 10 pm but I could hear her moving around while I was learning how to align the address information with the Avery labels that I had selected earlier in the day. I came to bed about 11:30 pm. She was up once after that.

Even though I was making every attempt I could think of without a direct command to get her interested in making the cookies, nothing happened. I gave in and finished the cookies.

The labels however was a businesslike activity and she selected that. All was well until she became confused. I had duplicated a page of the labels when I printed them. UGH! The silver-lining was that she recognized the error. She merely did not know how to react to it. (sad face here) In an earlier life she would have said, “Hey you duplicated a page we need to print the missing page.” (She might have added “dummy” as a tease.)

She discovered this just as I was leaving to take a walk and Cindy had come to sit with her. I took the offending page out of the rotation and suggested that she continue with the rest while I took my walk. While I was gone she just stopped. She was unable to continue. It did not occur to her that she could do the page of labels that was unduplicated. And my suggestion that she do that did not register in her mind.

Later in the afternoon I stayed nearby and repeatedly showed her what to do. She finished one more sheet of labels. We have only thirty to go. Last evening I wrote a small newsy letter to put inside of the cards. I had the cards and envelopes pre-printed with our names and return address.

It is becoming a long and disappointing road.

Carpe Diem.