My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
One of the hidden benefits of my sister-in-law’s retirement from her lifelong private babysitting business is the fact that Zane her grandson often comes to help his mom spruce up my condo. Zane came yesterday and brought his rock collection. He is so proud of it.
I have many magnification devices and he had none, so, I gave him one of mine so that he could further explore his collection and expand his knowledge of his world. I also gave him a special Rubbermaid rock case to house his collection. He seemed satisfied with both
I snapped a few photos of the future STEM student. I am hoping that Zane will come to help his mom often. And I hope he will keep up his interest in geology.
It is unlikely that his interest in rocks will last throughout his lifetime but it might. Maybe many years from now when I am gone he will remember the good time he had yesterday examining his collect with the special magnifying glass Uncle Paul gave him.
Scott figured out the exposure controls on his phone and took this picture. All I got was a blob of white light. The corona is still quite bright and phones have poor optics.
Leading up to and leading away from the time of totality, the light takes on an odd quality. In much the same fashion as just after a fierce rain storm, a thunderstorm, the light is oddly yellowish. It is dimmer of course but it is diminished and yellowish.
After the eclipse, young people’s conversation was about other things in their lives. My thoughts were about what I had just witnessed. I think I was a little awestruck and underneath the complete shadow, I felt a little sad. The sadness passed quickly as the awe took over.
After the eclipse shadow passed over us the newly blooming tulips where opening back up. The plants had closed their eyes for the night when the moon blocked out the sun.
Sunlight was dim but getting brighter. Little half moons appeared where the sunlight filtered through the bushes nearby.
Mostly though my thoughts went to Cheryl. Cheryl was fascinated with astrological phenomena. I was saddened that I could not enjoy the spectacle with her. I spent some time thinking of her reaction and discussing what we saw. We talked at length about how magnificent the corona appeared once the moon completely shut off the rays of the sun. She noted that she felt chilly when the shadow of the moon was directly overhead. (I am glad she did not need me to get her jacket from the car.) I told her that I noticed that the wind had kicked up somewhat . I supposed because the air was cooler. Many but not all of the birds stopped chattering to each other. I asked her if she had noticed the eerie sunset like quality to the horizon in all directions. This was unexpected for me.
Perhaps this is a way to mentally deal with grief, just simply talk to her. Later when I go to find the northern lights she can see them with me.
Today is Sunday. When I was here earlier Cheryl was dozing. She had taken her meds earlier and ate a little breakfast. Often when I come over on Sunday afternoon she is alert and active and talking to someone else who is invisible to me. This day is no exception.
She let me sit with her and hold her hands for a few minutes. Now she has rediscovered a knitted fidget that has beads, a pocket, a loop and buttons. Cheryl discovered this shortly after she moved to Bridgeway Pointe and it seems to keep her interest for long periods. She is struggling with the loop to hook it over the bead and button.
The loop is the most fascinating thing. She loves to loop it around her fingers.
After a few months, I find myself in Florida again without Cheryl. In June of 2023 when Cheryl and I came to the Florida panhandle with Anna and her family it was fun and it was exhausting. This time Cheryl is not with me. This time Joyce is often driving and I am able to watch the scenery. This time is different.
Last summer may have been our last trip together. This trip is not the first one without her that I was not going to work but this trip feels different. I cannot put my finger on what is different. Is it because Cheryl is not with me and it is the nation’s designated vacation spot? Surely that’s not it. I am visiting family with family. Is it because I am not worried or concerned about her care? As I was visiting with my sister in the previous October? I am still analyzing those thoughts.
Judy’s pool view
This trip started as an invitation to participate in an informational weekend about the activities supported by the Southern Poverty Law Center founded years ago by Julian Bond et al.
The weekend’s events culminated in jubilee commemoration of Bloody Sunday 59 years ago on the march from Selma to Montgomery Alabama.
Edmund Pettus Bridge
My impression of Selma is that it is remarkably poor. This impression is supported by empty and boarded up storefronts and the slow or non-existent recovery from the tornado that passed through a couple years ago. Whatever the vision is in the leadership of the great State of Alabama may be for the future it seems to have left the the small village of Selma behind. It is a pretty area. The few pictures I took of the river area show this fact and Selma has a grand boulevard in the center of it. There is a Walmart Super Center less than two miles from the town center. Big box stores tend to kill off the core of little towns. It seems to be happening here.
The bridge crossing happened on Sunday and after we walked across the bridge and completed wading through the crowd on the other side taking selfies and deciding what to do next and generally recrossing the bridge on the sidewalks back to the carnival atmosphere a block off the side of the boulevard, we found our bus back to Montgomery. That evening we went to a nice local restaurant for dinner. Fifty-nine years ago many of those bridge crossing folks spent the night in jail or the hospital somewhere. It is quite a contrast, then and now, but the poverty is still there.
The next day we were off to Port St. Joe, Florida to visit with our nephew Mark and his wife Leslie. Their little vacation home in Port St. Joe is set up perfectly no TV, no WIFI, just conversation. Port St. Joe is a sleepy little town with the distinctive title of original capital city of the State of Florida. Leslie grew up there. Mark and his family took us to a raw bar. I later found out this is another name for a sea food restaurant.
As I conversed with Mark it struck me that he is very much like his father, my brother. In addition to resembling his father physically, his mannerisms, his focus, his jesters, I felt like I was talking to a younger version of my brother. I have not seen Mark since Mom’s funeral and we did not talk at length at the funeral.
Cheryl came flooding back into my mind. I looked around and in my head she told me that if she could have been there she would have sat near Leslie and the kids to talk and catch up. Family and conversation is very important to her. Sitting with Mark, my sister Joyce and his family, I realized how much I was missing Cheryl. She would have enjoyed this trip very much. And the additional aspect of lived history would have had her telling about this trip over many dinner conversations into the future.
The next day we continued on to visit with Mark’s mother, my sister-in-law, Judy. My brother left this Earth in May of 2020. Sadly, because of the COVID travel restrictions, Cheryl’s inability to travel easily and other factors, we were unable to attend services for my brother Bill. Judy showed Joyce and me a wonderful memory book put together by the funeral services company as well as the program for Bill’s celebration of life. I picked up the book and looking through it had to catch myself as I wanted to turn and show it to Cheryl. (I was missing Cheryl again.)
This was perfect; family, history, hiking, a beach nearby, Judy’s beautiful house at the end.
When I got home in the early evening my son Scott picked me up at the airport. As we rode along my only thought was to drive over and visit Cheryl. She was in bed already so I kissed her goodnight and returned home to eat something and consider various aspects of the trip, my relationship to my own family and enjoy sleeping in my own bed.
This morning my thoughts turned to ice cream. Cheryl and I often went out for ice cream in the evening. In two smaller suburbs there was a Dairy Queen in one – she likes Oreo Blizzards – and Aglemessis Bros. which is a small local ice cream and confectionery. She likes black raspberry chocolate chip.
There is a very good story about the second store. many years ago when Cheryl was still working one of her coworkers would have what she referred to as “Grandma’s Camp”. She invited the grandchildren to stay with her for a week in the summer individually so that she could get to know each child without the distraction of the others and the bigger family around that would be there during big family gatherings. Cheryl decided that this was a good, bordering on great idea.
Audrey, Anna’s third child, stayed with us during this episode of our life adventure when she was about seven years. I am unsure exactly how old she was but it suffices to say she was a young child. She was a very early reader which became apparent when I took her with me to visit my mother at the independent living situation she was staying in to help organize her meds for another week. Audrey read some of the names of the medications and was asking me what various ones were for. Mom took a bunch of stuff.
Afterward I took her to Aglemessis Bros. for ice cream. This store has an old fashioned soda fountain style counter in it that you can sit at and watch the folks (soda jerks) dish up the ice cream and sodas. We sat there. There is a big board on the wall listing all of the flavors and other less important information about price. There is also a menu of sundaes and other goodies in addition to a display case for various chocolate delights and chunky chocolate all sold buy the pound. It is a chocoholic addict’s downfall. Audrey looked up at the board and said to me, ” Grampaw, they have chocolate chocolate chip!” I responded yes they do and you can probably get hot fudge on top if you want that also. I did not know at the time that my granddaughter was a chocolate fan like me. (It makes me smile inside when I recall this experience.)
I think she got chocolate sauce on her two scoops of double chocolate chip ice cream as did I and we sat with satisfaction as we ate and watched the activity behind the counter. I suppose that is why I particularly enjoyed bringing Cheryl to the Aglemessis store. It always reminds me of this story. I think tomorrow perhaps I will see if I can bring Cheryl some black raspberry chocolate chip ice cream from there.
From a precocious, chocolate loving, early reading, intelligent young girl to a beautiful young woman, when I think of Cheryl and I going to Aglemessis Bros. for ice cream, I think of Audrey and chocolate chocolate chip.
There are special people in your life that unbeknownst to you are looking out for your welfare.
A wonderful thing happened to me last evening. A friend – I thought Cheryl’s friend – asked me in a text message if I was still going to a favorite pizza place on Tuesday evenings. I am not.
This was something that Cheryl and I started many years ago as a reason to have some time out of the house and enjoy each other’s company without the distraction of other things. We started the pizza tradition on a Friday night twenty or so years ago. Her Parkinson was non-existent. Our favorite pizza store at the time became very crowded on Friday and over time we tried different days until we landed on Tuesday for no other reason than it was not crowded on Tuesday. “Anything goes Pizza Tuesday” was born.
It is amusing as to how little family traditions are born. Our pizza Tuesday was born this way. On some Tuesdays we would try a different pizza store but it was always pizza. Sometimes Cheryl wanted a calzone. On those occasions I would get a hoagie sandwich. But Tuesday was sacrosanct and pepperoni was king. If it did not have pepperoni on it, it did not count as a pizza. It was merely flatbread with stuff on it.
As Cheryl’s disease progressed I kept up our outings for pizza. I invited our good friend and neighbor to come with us. I invited other friends and family. Some nights we had a crowd. Some nights it was Cheryl and me. During the pandemic pandemonium I carried out from our favorite pizza store and we ate around our dining table with our neighbors.
I kept this going for longer than was probably necessary. The last few times we went on a Tuesday evening Cheryl had little mobility and I would push her around in her transfer chair.
But I have digressed a bit. When Mary Jo texted me and asked about pizza Tuesday, I asked her what did she have in mind. After a few exchanges we settled on a time and she and her husband would pick me up. Two days ago, Cheryl had been mostly sleeping away the day as a result of all her activity on Monday. After our chat with Dr. Y she had three visitors in succession. That sort of thing tires her out. Sundowner Syndrome is annoying to deal with in winter but Showtime which she is still able to muster up for an hour or so just plain wipes her out. So on Tuesday she mainly slept. And on Tuesday I went to the bar with Gary and Mary Jo.
Help from Many Others
Two women have been a great deal of help to me over the past couple of years are Cindy and Linda. Both are cousins-in-law. Cindy is married to Cheryl’s cousin. Linda was married to my cousin Frank. Frank is gone from this Earth. Both asked how they could help me spontaneously without me asking for them to help. Men are not good at asking for help of any kind, especially me. Cindy recognized that first and volunteered to come and sit with Cheryl for a couple hours once a week while I went to ride my bike and got some exercise. Linda did a similar thing. I was able to twist her arm to get her to sit with Cheryl while I attended a seminar on caregiving a couple years ago. They will always be front and center in my mind when I think of people who have helped me the most as Cheryl’s cognition deteriorated.
If I look with different eyes I find myself surrounded by caring and kind people just like Cheryl is surrounded by caring and kind people at Bridgeway Pointe. Sometimes you just do not know who will step in to help.
(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.
As in turn over a new leaf or turn over you are snoring? Nope these are turnovers made with croissant dough, egg wash and, in this case, cherry pie filling left over from another project.
In my father’s family there was this undertone at family gatherings that one should eat dessert first because as we all know, “One cannot predict the time or place of one’s death.” That is for the big man upstairs.Recently I rediscovered my copy of “Baking with Julia” a cookbook in the same vein as her old shows where she demonstrates how to do things. This book is dedicated to bread and pastries. I tend to wander off and experiment with variations on a theme.
About two weeks ago feeling full of ennui I decided to follow the croissant dough recipe and make croissants. Buttery flaky pastry dough has been a mystery for me. I have made bread for many years and each time I do I am amazed at two things; why I continue to buy store bread from commercial bakeries and how long the commercial bakery bread will last while I am eating up the last of the loaf I previously baked.
Following Julia’s explicit detail I mixed up a simple sweet dough and placed it into the fridge overnight. With it I beat up a pound of butter (18 oz. actually) with some flour and shaped it into an oval shape about an inch think and placed it in the fridge overnight. This was a two day activity. Not as big of a time commitment as making sourdough but much more demanding physically and definitely more satisfying mentally.
The croissants tasted great but had no great beauty to them. I used part of the dough to create a fruit pocket style coffee cake but the dough was wrong for that. Danish dough is better for the fruit pocket.
The last of the dough I used to make turnovers. These are great. I rolled the last of the dough out into a 12 inch by 12 inch square, cut it into quarters and folded the dough over a glop of cherry pie filling. I glued the dough together with some egg wash and pressed the edges down with a fork. All are painted with egg wash before going into a 350 degree oven for 15 minutes. When they came out I drizzled them with Virginia Bakery roll icing which is just confectioners sugar with more sugar and a little water. These are good. I will do them again.
Carpe Diem, but do not forget to eat dessert first.
My son’s life got jammed up today. He asked me if I could be at his house when the smallest grand son, Zachary, got off the bus in the afternoon. I said sure I can do that for you.
Four weeks ago that would not have been my answer. A couple of days ago it was yes.
Life changed when Cheryl moved into Bridgeway Pointe. She adjusted pretty quickly. I think that it is taking me longer. She slept late today. Today I have babysitting duty.
And as luck would have it, I was not needed for duty.
Haiku: Too bad, how sad, Dad. | Zachary okay today. | No need for grand Dad.
“Grief is love with no place to go.” says Armand to a young killer. Amazon Videos has made shows out of several of the stories written by some of my favorite authors.
Watching one of these videos the other night while waiting for my croissants to fluff up for the oven, this quote jumped out at me.
I think I am feeling that these days. Baking can be therapeutic. It is a hobby I have perused for many years. When My sister came to visit a couple weeks ago I made her pot roast one evening. It was great and I used the leftover mashed potatoes in a recipe I have for potato bread. That turned out great. Something I have not tried to do but I now have the time for is croissants and other pastry.
Yesterday I made some croissants. (Why is there two sses in croissant?) Here is a image of my first effort. I took them to Cheryl this morning but she was sleeping.
I also need more practice with the croissants. The other half of the croissant dough is resting in the freezer waiting for me to become inspired to try it again. I think maybe a hotter oven and proof the yeast a bit when I start the dough. The recipe I was following used wet (cake) yeast which I do not have. Perhaps further experimentation with technique. These two out of ten turned out okay – not bad for a first effort.
Holy cow they are rich. There is a whole pound of butter in this recipe.
Adjunct_Wizard 