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.
And Sweetest Day are arbitrary celebrations that I do not get. If you are someone who thinks those are important I apologize for any offense you may get from this essay but why did you focus on one single day? Well maybe two? Why not celebrate that relationship, that connection every day that it exists?
Valentines Day seems to celebrate sugar and chocolate. Sweetest seems to celebrate flowers. The months that each are in, February is filled with frantic anticipation of warmth returning and, October, dread of warmth leaving the Earth seem to posess little reason for flowers and candy. Nevertheless, clever marketers have made up a reason and then filled it.
Tony Decouple was badgered by Nick and Gayle on CBS the other morning when they had run out of mudslides, fires, snow and Donald to talk about. Tony is not a fan of a big deal special day as I am not nor is Debbie. And when Cheryl was with me she was not or pretended to be as she discovered how poor I was at acknowledging dates. I have had my wedding anniversary ingraved inside my wedding ring since day one.
My term for it is date dyslexsia. Many of you will say just write it on the calendar. That works but what if you have calendar dyslexia too?
Debbie and I spent time together yesterday. We had lunch and enjoyed the cold but sunny day here in southwestern Ohio. Discussed movies and kids but did not exchange candy and gifts. Maybe we are older and wiser and less enamored with the made up marketing ploys. (Maybe I screwed up.)
We first met after Sweetest Day last year so that dyslexic event was not an issue.
It just is harder. Several times over the past few days I have been blindsided by my own emotions. A hymn in church, a song on the radio, a picture on the Frameo, a note in a Christmas card, any of these and all of these bring to mind memories of glad tidings gone by. If I am completely honest with myself, I started it.
A good friend asked what my favorite song/hymn was and I responded “Hallelujah” and could not immediately remember Leonard Cohen wrote it so many years ago. It was often used in the closing scenes of the show “Criminal Minds.” It is a haunting tune, at least it is to me. I think the rendition that is used on the show is the one by John Bon Jovi. I am unsure of that fact but it haunts me and reminds me of Cheryl and our younger times together.
When that happens I just let it roll over me. It is disappointing that Cheryl is no longer with me but we had a great life together. More than fifty years of love, children, busy, travel, learning, excitement, anguish, grace, parties, dinners, Christmases, Easters, egg hunts, summers and summer vacations, it was a wonderful time. We argued too but we never took that to bed with us. She supported me and I supported her.
Today as I put my last stamps on my Christmas messages I set Spotify to play “Hallelujah” by Leonard Cohen. After that it wandered off to play a not so random collection of songs from various albums. Yusaf (Cat Stevens) started playing and suddenly I was 25 again. It is interesting to me how that happens. Cheryl has long hair and the kids are little. Yusaf is gray these days, as am I.
And though you want to last forever; You know you never will; (You know you never will); And the goodbye makes the journey harder still – Cat Stevens “Oh Very Young”
It is good to remember those times we had.
Time only moves forward. The Christmas greetings are in the mail.
Early in the morning after awakening I find coffee and turn on a newsy program to get information about the latest weather history. This time of year and on this day that Google Calendar tells me is Native American Heritage Day but the sale folks tell me is Black Friday, the weather folks are doing their best to get us out to shop before the temperature gets to absolute zero. In between the commercial advertisements are entertaining.
A cute little girl asks her mother, “Do crabs have eyebrows?” Today it made me laugh. Why did I laugh on this day?
Who knows? I certainly do not. I tripped over a Spotify playlist of Lindsey Stirling and her high speed electric violin playing and it picks up my spirit today.
And the ads have made me think of Christmases past and hope for Christmases future.
Perhaps I need to be in a crowded place with a hot chocolate in my hand.
The bear got his hat out yesterday. Maybe his friend the elf will show up and help celebrate soon.
On this day, however, this day before Thanksgiving Day I am thinking about our life, Cheryl’s and mine, and what a gift it was to us. Tomorrow is the day to count blessings and be thankful for what we have. For me I am also thankful for what we had.
I do not have Cheryl with me any longer but what I have instead is the knowledge that she is not suffering with Parkinson and dementia. I am thankful for that knowledge.
I do have three well educated and successful children who have built successful careers. All of the grandchildren in all of the families are healthy and happy. Some have moved into careers themselves. Some are still figuring it out for themselves but they are all self reliant. Their parents are excellent teachers. I am thankful for the family Cheryl and I made.
I do have my own health. My knees do not hurt constantly like other friends that I have. My hips do not hurt when I walk like others that I know. I was still able to hike four miles up and down the face of a wooded cliff-side in Kentucky. (My legs complained a bit afterward but the bourbon worked. I bought real hiking boots when I returned home.) In the summertime I spent many days riding 15 – 20 miles on my bike. (I am not fast but I can keep up 12 – 15 mph for long stretches. I am not in a hurry. I like to look around me while I ride.) I would like to lose a little weight but my physic will probably never be like what I was at twenty-five now that I am seventy-five. I am thankful for my health.
My sister and I have become much closer. Only she and I are left from our original family. She and I are both widowed and that is sad but it seems like we lean on each other a bit and that is helpful to both of us. I am very thankful for our relationship.
I am thankful for all the help we received from friends and family this past year as Cheryl’s health rapidly declined. I am thankful to all the kind folks at Bridgeway Pointe and Queen City Hospice that took care of Cheryl as she faded. Thank you all.
I am thankful for new friends and old friends who have helped me through the past year.
I am thankful for kindness in the world.
I am thankful that mom taught me a few basic cooking techniques when I was younger and I did not realize she was doing it.
I am thankful that I like to cook and that I like my own cooking. (See the physic comment above.)
I am thankful that things always seem to work out.
I am thankful that I am getting better at staying in the present and not experiencing anxiety for the future. This quote from Matthew pops into my head sometimes (it is true!) when I think about what comes next. [“Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life? And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin.”] I thank Cheryl for teaching me this concept of staying present and Mom for pointing out self-reliance goes hand in hand with that.
Mom left me with a gift that I will always be thankful for. I wrote this paragraph sometime ago: At the very end of her life my mother awakened for a few minutes as I was sitting with her in her room at Bridgeway Pointe which is an assisted living community where she lived out the last fifteen months of her life. When I walked into her room Mom was quietly dozing in her bed. I sat in the usual chair I sat in and waited to see if she would awaken. It was after her dinner time and she often took a nap after dinner. After a few minutes, maybe half an hour, she woke up and looked over at me. She did not have her glasses on but she said, “Paul, is that you?” I replied, “Yes it’s me.” And then she said something that I was not expecting. She said, “Thank you for all your help.” After that she dozed off again. It was the last conversation I had with my mother. She passed away a couple days later. It still makes me cry.
I am thankful that I was helpful to Mom. She acknowledged that to me. All I could say to her was, “you’re welcome.” And I sat in her darkened room as she dozed off again.
We should always be thankful for what we have and what we have had and what we may be given. When someone is helpful to you, acknowledge it and say thanks to them. (Do not whine about it if they are unhelpful – reread the Matthew quote.)
The holiday festivities are here. The Grief Share topic is “how to survive”. Last year was hard enough. Am I expecting it to be harder? I do not know.
This particular weekend has been and is still a busy one. For some simply being busy helps with grief and I suppose that may be true for me too. Fewer folks showed up for the holiday grief share program. Perhaps that is because they are busy with Thanksgiving planning. Perhaps many simply do not want to think about it. I was not thinking about it until the opportunity arose to attend this special group.
This will be the first Thanksgiving Day – which by the way is my favorite festivity – without Cheryl being physically here. Last year she was not mentally here. I do not expect to not be sad and I will not apologize for feeling that way.
When the carpet cleaner folks are finished today I will decide where to put the Christmas tree. And after I make that decision I will get it out of the box and put it up. I did not do that last year. Perhaps I will start a new tradition this year and place the tree in a different spot. Cheryl will argue with me in my head. I look forward to it (the arguing).
Do not be a curmudgeon, Paul. Try your best to be if not happy, at least, up beat. When we gather this year let’s talk about the good times. I remember a Christmas Eve a long time ago when she insisted that I open her gift to me after we had come home. I wanted to do was go to bed and sleep after a night of celebration and maybe a little too much alcohol. She had made me a shirt. She was so proud of it. Those are the experiences that I want to remember. (I do not remember what I gave her that year.) I was then and am still now impressed with her ability as a seamstress. That is only one of my favorite memories.
Another more recent memory from maybe three years ago, she said to me, “Get your music machine out and turn on Christmas music.” She means Alexa. I cringed when she told to do that. I think I grumped a little too and then I went to get the hockey puck I move around to listen to music. A Christmas song or two in among others is okay. WARM 98’s idea of solid Christmas music, old, new, good, bad, chipmunks, Benedictine monks, rock and roll, country-western, some group of nuns, Bing Crosby, etc. a few years ago lost me as a listener. That was not a big deal to them since I rarely listened to their station. Five weeks of Christmas music is agony to my ear. I feared the worst was going to happen – Christmas carols from Halloween to Christmas. There would be no “Monster Mash”. I said loudly, “Alexa, play Christmas music!” Off we went into the holiday season. Cheryl insisted on making cookies that day and I helped her. (I wish I was not so reluctant to do so that day but that day is history.)
Cheryl often told me a story about peeking through the keyhole of the doorway to the living room and seeing all the toys around the Christmas tree. The keyhole got dark and the door flew open. (Uh oh.) There is more to the story and I wrote it down somewhere. I may spend the rest of the day looking for where I put it.
Smile!
Be thankful for what you have been given! Carpe the Holidays and Carpe this Diem and all the rest you are given.
Listen with your heart. It is quieter than your mind.
Listening to my youngest son talk to his oldest son lightens my heart. They have common interests in sports. I do not have a strong interest in professional sport. Those are merely noise off to the side of the snacks and other refreshment.
Many years ago I listened to my father when he told me, you should always listen to the other guy even if you think he is a jerk because he might have a good idea. Dad rarely expressed his judgment of others. He also understood within himself that listening does not happen while one is talking.
Mom had a phrase that I remember from childhood. She used to say, you have to pull up your own socks. I do not know where that came from but I took it to mean that one should seek help from others when necessary but it is up to oneself to get up and move on from any difficulty.
Today I am listening to my heart. I believe I need to listen to that part of me. How do I feel about all that has unfolded in my life. Political noise has had no effect on that. Life and living with Cheryl for three quarters of that time has. She has made me a better man. But so has listening to Mom and Dad and listening to my son’s conversation with his son. So has listening to my heart. In a lifetime of conversation, real conversation, and listening to others in my life, I have concluded that only I can pull up my own socks. And as I write this I think about the times I pulled up Cheryl’s no slip socks (her name for them) in the evening and put her pajamas on her to prepare for bed. She would not accept my help to do that in the morning when she got up.
Last week I retreated from the every day so that I could listen to my heart. I find that to be easier and more fulfilling if I distract myself after awhile with some occupation totally diverse to a previous concentration. This method has worked often for me through life. (The mantra is “sleep on it.”) A book of fiction or movie that has no moral to convey, a romantic comedy will do this for me. The distraction refreshes. I can look for help where I can find it but only I can pull up my socks.
I have been listening to the Grief Share videos purposefully for several weeks. I find myself talking and commenting to the various experts and listening to the people relating their grief story. There is a yin and yang to it all in my thoughts. I resist experts telling me what wine pairs well with what cheese. Occasionally, Dad will say be quiet and listen. (Maybe not often enough do you talk to me, Dad.) So, today I will listen with my heart.
I will remind myself that my concept of God is not the same as other’s concept of God. It is important to see past the literal when reading the Bible or the Quran or any religious text and just listen. Listen to your heart. Meditation an eastern concept helps with this. Prayer a western concept helps with this. Keep an open mind. Be still and just listen. Read Siddhartha. Be still. Listen.
I ask myself that question several times per day. What is your hurry?
My encouragement to myself is “what is your hurry?” At this stage of my life the answer is I do not know. (IDK)
I do know that when I close my eyes in the sunny shade of these woods and empty my mind as best I can, and then I open my eyes again the evergreens are a brilliant color with a deeper blue. Why is that? IDK. I have hurried through life without looking.
Why did I pick this trail for today’s activity? A day ago I wrote that I am not a child anymore and I am not youthful but I still see a world of wonder with youthful eyes. I remember long ago when Cheryl and I came here we hiked this trail more quickly than I do today. I am not in a hurry. Maybe that memory brought me up the cliff face. IDK. Today I stopped often to rest but also to look, think, remember and read and listen while I read.
I selected several books to bring with me on this retreat and personal retrospective. I selected first “So long and Thanks for the Fish” by Douglas Adams. I have read a couple of the others from the Hitchhiker’s Guide to the Galaxy trilogy. There are five books altogether and the theme is cynicism and simultaneous mediocrity as we splash through life. Wonko the Sane explained why he became a hermit – “The sign read: hold stick near the center of its length. Moisten pointed end in mouth. Insert in tooth space blunt end next to gum. Use gentle in-out motion. It seemed to me, he said, that any society that had so far lost its head to put such a detailed set of instructions on a package of toothpicks, was no longer a civilization that I could live in and stay sane.” We have a lot of things like that going on. “Caution HOT!” is printed on the side of the McDonald’s coffee cup. I always think, “I hope so.” Why are warning signs like this posted? I passed several today on railings erected along the trail. The other side of the rail was a sheer drop. “DANGER No Entrance ” is printed on the sign. IDK. I did not hurry through the small volume. Several times walking today I found myself reading on a convenient log or outcrop of rock.
Why did I select this book to read first? IDK but it has been many years since I read the Hitchhiker’s Guide to the Galaxy and the absurdity of the story line is compelling. Maybe it is time to review my life and start anew. Maybe I long for the next great thing. IDK. There is no hurry.
There will be time to take time for wonder. There is no hurry.
I came to be alone with my thoughts for awhile and hike in the woods.
Leaves falling in a light breeze in a forest sounds like rain if you listen. They mark the end of a season. They make no promises about the next season. The plants go dormant and wait in hope of spring.
When hiking on leaf covered trails pick up your feet to avoid tripping on invisible rocks and tree roots. (Sometimes wisdom emerges during a morning Autumn hike in the woods.) This learning experience dissipated a mere hundred yards down the trail. The lesson was repeated to emphasize its importance.
Another wisdom arose nearing the end of this trail, one I often forget; “You are not a child or even young anymore. Those steep grades covered with leaves are not for you.”
There are many memories in this park and they are all mixed up in my heart and head. You, Cheryl, got the kids and grand kids to appear for my 60th birthday and our 38th anniversary. We came here many times. Now you are gone and I am here without you.
I have to leave that thought. This is an experiment with a new experience. I am still feeling my way along. Am I here because this is the new beginning? That old adage – This is the first day of the rest of your life! – popped into my mind. What should I do with it?
I talk about being old but I am not really. I can walk without assistance. I should focus on what is possible. I have not hiked trail #6 up to the DuPont lodge since Luke was seven or so. Up up and away. I made it and not too winded. (I am not afraid to tune into my body and take a break when it tells me.)
These are things that ran through my thoughts today as I followed two woodland trails. The first down to Cumberland falls from the DuPont lodge in the park. The second back up the cliff to the lodge for a bite of lunch.
This park has a lot of history for Cheryl and me. We came here on our honeymoon trip. We spent a week in one of the old cabins not far from the lodge. In those days (1970) the housekeeping folks showed up everyday with fresh towels and two rolls of toilet paper in what looked like an old milk delivery truck. We took some home, I think. We were poor. Later I would wonder what they thought we were doing that we needed so much toilet paper for. It was late August but I could not imagine how that factored into it.
After the kids were grown and on their own we came back here for our 25th wedding anniversary. I had thought we might do a big deal trip for that but here seemed appropriate. Afterward we came here many times on the weekend near our anniversary. It is close and special. Those particular trips, about ten or fifteen years worth, are special memories. On some trips we when to other Kentucky parks but we continued to return to Cumberland Falls. The last time was before the pandemic pandemonium.
I was thinking about that yesterday. Cheryl needed a cane to lean on then. I asked her when the last time was that we were here as I walked up the front steps into the lodge and she flashed me a picture of her holding her cane and holding the handrail to go down the steps in front. (She was stubborn about ramps.) Often she sends images to me.
Carpe Diem and the images as they become memories.
She did it again this morning. At least that is what I thought when I found most of my ingredients out to remind myself what I intended to do today.
A couple years ago, when Cheryl was struggling physically more with Parkinson and her struggle with the dementia aspects of it was taking away her ability to follow simple directions, she coerced (maybe too strong of a word) me into helping her make cookies. I did not want to do it at the time.
Once or twice these were Snickerdoodles. And a couple other times we made chocolate chip cookies, the recipe is on the two pound bag of Nestle’s morsels. “You have to get the yellow bag!” she said to me once when I when I returned from the store by myself in the midst of the COVID pandemonium and price-shopped for supplies. “Those won’t work.” I was disheartened. I had purchased the store brand of chocolate chips. I argued my case for twenty-two milliseconds before realizing that there was no point in contesting the issue further. I returned to the store for the correct chips (“Morsels! It will say morsels on the bag. The bag is yellow.” She spoke to my back as I left.)
I can hear her voice. Little stories like this help me to recall her voice.
Yesterday, because I could avoid it no longer, I went to the grocery to restore my larder to its previous vigor. At the beginning my list had only two things, dried cranberries and raisins. Both of these I add to overnight oats which has become a new favorite breakfast treat. I have a pint Ball jar that is just the right size to contain a half cup of rolled oats, a cup of milk and whatever else I put in with those usually raisins or craisins some honey and chia seeds to set in the fridge overnight. I have also added at times cocoa powder, cinnamon, cardamon, vanilla or tahinni and used brown sugar instead of honey. This mixture goes well with my assembly of the coffee in the evening as well as drinking the coffee in the morning.
While putting all away I discovered that the bag of dried cranberries that I purchased would not fit into my quart jar I use to save dried fruit. Alas, some remained in the ziploc bag that only zips most of the time. I left them on the counter to become a healthy evening snack near the apples and bananas.
After preparing some lunch I hunted for some sweetness to satisfy my heritage and hit upon spreading the Nutella look-alike I purchased at Aldi sometime in the past on a saltine cracker and sprinkling cranberries on top. That tuned out pretty good. (If you are not a believer, try it.) I realized that I was inventing a variety of cookie – biscuit or digestive to the Brits out there – and heard Cheryl say, “You could try making a chocolate cookie with stuff in it.” I blame Cheryl when I hear these inventive thoughts about cooking. She was not very inventive with ingredients but very inventive with technique.
I launched myself into search for a basic chocolate cookie that I could modify with extra ingredients. Below is the final product:
2 C. all purpose flour
2/3 C. powdered cocoa
1 tsp. baking soda
¼ tsp. salt
1 ½ C. white sugar
1 C. unsalted butter
2 large eggs
2 tsp. vanilla extract
1 C. chocolate morsels (in the yellow bag)
1 C. dried cranberries
½ C. smashed walnuts (crushed in the bag but I smash them further)
I creamed the butter, eggs, vanilla and sugar for a bit. Whisked the flour, salt, soda and cocoa together in a separate bowl dry and then dumped them into my mixer. (I bought a new mixer recently. It has extra paddles.) After a bit of mixing I tried out my folding paddle and dumped in the rest of the ingredients.
Bake in a 350F (177C) – medium oven 8 to 10 minutes. This lump of cookie dough makes about 4 dozen if you use a teaspoon from your table wear set to scoop and spoon some on to UN-greased cookie sheets like I did. (My mind always wants to grease the cookie sheet and Cheryl always tells me, “No!”)
After 8 minutes on the timer, I rotated the cookie sheets in the oven and added 4 minutes to the time. This worked for me because I dislike (maybe hate) chewy soft cookies. There is something special about just the right crunch that makes me smile.
Cheryl! You turned me into a cookie recipe experimenter. It is all your fault. (Dammit.) I love you and you are right. These are good. The tricky part will be spreading them out in my eating habits. I have eaten three while writing this story. They go well with coffee.
In future experiments I may try crushed peanuts and raisins. GORP cookies sounds good to me.
I wonder which wine pairs well. Pinot Noir? Chardonnay?
A conundrum. There was a big one there in the gap. It was begging to be eaten before I took this picture and I obliged.
Carpe Diem. (life is better with cookies and chocolate)
It has been six months today. How are you in your new existence? I have to admit to myself that I still miss you greatly. You were so much of my life how can I not?
I wrote on my blog (I am sure that you read it.) about my own personal “If Only”. If Only is the title of the next section of the Grief Share series. I have not watched the video yet but I will later today in preparation for helping Sr. Janet tomorrow.
In case you forgot, here is what I wrote the other day:
If Only
There is no percentage in “if only”. None. Although many of us spend considerable time with if-only style thoughts. If only I had completed (insert item here) I would be (insert perceived superlative or horror here). If only I had asked (him, her, them) about the consequences of (this, that , those) we would be (better, worse, still wondering). One can go anywhere with a good if only.
There is no percentage in it. Nothing is gained by speculative thought and other attempts to predict present out comes from “if only I had”. Additionally there is no real risk except perhaps diminishing self worth. God (or whatever one’s concept of God is) as the eternal knows the future and needs no predictors. Past, present and future is the same to the eternal.
Fuzzy philosophy there but what-iffing your past actions does not help today’s actions.
Grief Share talks about this in long winded generality. The “if only” that I deal with often when it jumps into my head is why could I not see that she was moments from leaving this existence when I kissed her good night the evening before she died.
This is my “if only”. What would be different today if I had sat up with her as she took her last breath? I will never know.
If Only.
At the time I was experimenting with prose poetry in a way. You know what a corny poet I am. I still have those old letters we wrote each other in high school. I have yours and mine because you never threw anything away. Neither did I. Those notes are special to me. Not long after you died, I read some of them and thought that I should put them together and match the dates. I did not. Much like looking through old pictures (I found the packets from our trip out west with the kids.) I look through your letters and then find my reply. Good heavens, I was smitten with you back then.
I am smitten with you now as I think about those days and the life we had together.
A fellow blogger wrote this comment to me: “I was with my dad in his final hours, lingering long. My older brother wondered aloud if he was hesitant to leave while I was there, as if to protect my sensitive soul. When I went home to sleep, he went on to eternity.
I wrote back: “ … And that is what I tell myself. My father (I think) waited until Cheryl and I left to eat a little lunch. When we came back – Dad was gone. I simply did not want her to feel abandoned. I think that is the source of my sadness when it pops into my head. — and this thought and how it affects me is what I will think about today as I walk and try to enjoy this beautiful Autumn day in Ohio. Those thoughts make it all about me and I do not want to feel that way. At other times I think Cheryl hung on as long as she did because she wanted to be sure that I would be okay. That was her personality. (that thought also makes it about me.) Today is Monday. Cheryl died on Monday April 22. Six months ago today. I think I am missing her a little more today. Thank you for reading and your comment. It is a comfort.”
Do you remember that? We went to be with Dad that day at Hospice and we went to get some soup in the little lunch room they had there. That is a vivid memory of mine.
I can still see Dad’s gray face. I can still see your gray face. I can still see Mom’s gray face. I can still hear the silence when Laura stopped breathing.
Even when it is expected, death is unexpected. If you had wanted me there to be with you that morning and could not wait any longer, I apologize for not getting there to be with you. Please do not think that I abandoned you. If you knew when I was coming that morning and did not want to upset me with your silence, thank you but I was upset anyway. (pretty sneaky, girl)
I miss you today. I am going to take a walk in the sunshine and think about it all.
If you are allowed to, save me a seat next to you. We will talk more when I get there.
Adjunct_Wizard 