My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
Today is Cheryl’s birthday. She is not sure how old she is and that is a good thing in many aspects. When I remind her, her answer is, “Really?”
Tonight we will go to dinner to celebrate. It was a spontaneous decision on my part. Some of her family will come too. With parkie’s many decisions are spontaneous. One has to determine how the day is going.
Her sister Nancy sent her some spontaneous flowers. Our niece, Natalie, brought them with her when she came to clean our condo today.
Spontaneity is the spice of life and living in the moment is something we all need to do more often.
I woke up this morning and there on my Facebook feed
Was this beautiful expression of love on our anniversary
It was made by my friend Edie down south
God spoke to her, we never talk by mouth
She has this exquisite talent she is sharing
she posted this on the day of our pairing
Edie, you did not know
that fifty two years ago
Cheryl and I were wed. Thanks for your art.
This day is special, thanks for the great start.
August 29, 1970
It was a seriously hot day. We were dressed to the nines. We were skinny. Life was in front of us.
This is not my writing but Edie captured my thoughts with this post on Facebook. She and her husband are in about the same place as Cheryl and I with Parkinson’s Disease.
“Accepting what is… Choices and Avoiding The Sting of Defeat…”
There isn’t a day that I don’t Experience either a “slap myself on the forehead” moment, err on the side of caution, spout off an opinion or best of all, make my fella laugh or smile.
Some days are just rough. They’re tough!
Others? Well…there are good times; a smile across the room, a look of total understanding and the knowledge of who we are currently (and who we once were together. We’re still one.
This is a tough week for me personally. Our 45th anniversary is Saturday, Oct.24th. Tommy has been clear headed lately with some delusions.
A while back he mentioned several times that he wanted things to be “like they used to be” with our family. Life evolves and nothing remains the same.
As we all know life is not static. We’re a close family, but the grands have grown up, moved away and their parents are busy too. We used to have UFC Fight Nights, BIG holiday gatherings etc., and even no reason to get together functions. We gathered often and now? Not as much. Parkinson’s causes loneliness.
PD has changed all of us in various ways. We’re each caught in the midst of love, losses and our own feelings and responsibilities in life aside from Parkinson’s and Dementia. It’s inevitable. It happens.
We’re all worse for the wear because it’s a ruthless disease. But making, (hopefully the right) choices, accepting the realities of PD and Dementia, and preparing proactively for change has helped me to avoid the sting I mentioned at the beginning of this post.
Our CNAs have given me the “breathers” that I have long needed to separate myself from too much of anything that could bog me down when I’ve been up to my ears In either a struggle with Tommy, a medical issue, the VA or my own emotions. As caregivers we have lists of to do’s a mile long that threaten to swamp us.
While I’ve been planning our family gathering for our immediate family members, I’ve pulled out photos of us throughout the years, and of course…I cried.
I cried because I love Tommy passionately. I miss him, but I accept him as he is too. I do love him even more today than yesterday. Some days we get on each other’s last nerve too!!!
I cried because as much as I have tried to keep PD and Dementia out of our lives, it has, like a bee being threatened, taken a bite out of us and stings like crazy!
When I finally came to terms with accepting the transition from normal to cognitive issues and delusions, I had another epiphany. I came across a photo of one of the Santorini stones I paint. Painted in the body of the bee are the words, “Let It Bee.” Lord knows, I’m trying!
Moving forward. My menu for Saturday consist of Tommy’s favorites and the carrot cake is my favorite. The wine, Moscato-Asti is our favorite.
I pre ordered (from local businesses) everything so I wouldn’t have to prep or cook. I’ll decorate the cake with a topper that says “We Still Do” and edible FALL leaves. I’m excited and a little off kilter too.
Having the family near will be centering for us both.
The menu is planned and is “enough”. It will be truly complete when our group comes together with gratitude around the Kynard House table.
I wish you all could join us! I’ll post pics later.
Edie and Tommy
We too celebrated a milestone anniversary this year. We have been married 50 years. Sometimes I am disappointed that our retirement activity is centered around Parkinson’s Disease and other days I have come to understand that it may be the reason for being.
Our children organized a wonderful celebration. For that I am very thankful.
50 year cake
Anna also put together this collection of snippets of various sources.
We were young and skinny then.
… 50 years later here we are. Happy 45th Edie and Tom – May the sun always be shining on you and your family.
It has been fifty years since we wed on a HOT August morning. It has been fifty-four years since we first met on a blind date on a blue moon in August. Two skinny kids deeply in love with each other got married in 1970. Nothing but the future in front of us. Standing on the shoulders of our moms and dads.
Spring Grove Cemetery
We had a lot of faith in each other that day. Looking forward we could only see brightness, happiness and companionship. Neither of us could see fifty years into the future. We vowed our love to each other anyway. Here we are.
We were married in the summer of 1970. I was between the University of Cincinnati, newly graduated with an Associate Degree in Electronic Engineering Technology, and moving on to Miami University for a Bachelor of Science. We had rented an apartment in Oxford, Ohio. Scraped together a few sticks of furniture from various sources. Cheryl had gotten a transfer in her job with Metropolitan Life Insurance to the Fairfield office about 20 miles from Oxford, so, we would have an income to support us.
Tricky Dick was president. My commitment to the Selective Service draft was completed. I was enrolled in all the classes I wanted to begin at Miami. Cheryl owned a year old VW beetle that we could have because of her job. (MU had car restrictions at the time.) Life was good.
Three kids
At the end of 1972 our first child was born. — a sidebar: We knew Cheryl was possibly pregnant in time for me to sign up for a second woodcraft class at MU. The Industrial Arts program had a great wood shop. For my project I built a cradle for the new little person. In this class Doc Foss showed a book he had that contained pictures of projects completed by previous students. On the pickup day when I came to get the cradle, he was photographing it for his book. (I got an A. Professor Foss was a grandfather.) Our first child is a science teacher and has four children now. Tempus fugit.
About two years later, our second child was born. — another sidebar: This one was in a hurry. It is common now for the father to be present for the delivery. Not so in the 70’s. I guess we were in the vanguard and Cheryl had all of our children without any anesthesia. Natural. With the first one all went well but took a long time. (A little whining here from dad who did not do much except wait and coach.) So, in preparation for the next big overnight test of endurance, I bought a new thermos, which I still had until 2012 when I dropped it walking into work one morning, filled it with coffee and took it with me to the hospital. Never had a need for the coffee. This kid came zipping out at about 2:30AM. On the way home from the hospital – just me, Cheryl stayed – I decided to try some coffee. Stopping suddenly for a traffic light I spilled a bunch of it down the front of me. HOT. Dam HOT! — Robin Williams, Good Morning, Vietnam. This child is now a mechanical engineer and has married the girl he took to the high school prom as I did. He has two children of his own.
We were fertile! About two years down the road our third child was born. I skipped the whole coffee thing remembering the debacle of our second child. Expecting another zippy birth, I left it at home. Our third child did not want to leave home. Hanging onto mom and not cooperating with the zippy thing, the third one took (I think) the longest to come out and say hello. This one now works for Children’s Hospital as a computer guru. He has two children of his own.
Cheryl had several jobs, me too
When I first started my working career, like my father, I believed that I could work for my employer Cincinnati Milacron for the rest of my work life. That turned out to not be the case. I left CM to work for Valco Cincinnati, left there to work for Cincinnati Industrial Machinery, got a M. Ed. from Xavier University in preparation for teaching high school science. Failing that career move, I taught as an adjunct at Sinclair College and the same at Southwestern College. I became a GED instructor at SWC and taught a basic math class. After a year and the Obama administration insisting that for profit colleges do a better job at helping students to find jobs, I could see my job disappearing and jumped ship to Armor Metal Inc. in the service group. My intention was to ride that horse into retirement and I did.
Cheryl during our early marriage spent much of her time raising the kids and continuing her course work in mathematics and computer science at University of Cincinnati in evening college. She graduated with a degree in Computer Science. Once the children were in school she worked for a time at the same school and ran the first computer lab. Later she worked as a computer consultant with M.B. Potter and Associates. She left there to work for Donahue securities and when they collapsed under the weight of a federal investigation, she worked for the Securities and Exchange Commission. F.D. Fund Choice bought the funds that she had been working with and she worked for them for a time. She left there to work the remnants of the General Protestant Orphans Home in Anderson township. She was RIF-ed from there and worked as a contractor again for a bit for Armor producing the manual documentation for some of the machinery they produced for the can industry. Her Parkinson’s was beginning to be more annoying after this so she retired.
Early in our marriage, Cheryl attending evening college gave me the opportunity to be alone with the kiddos for two or three times a week in the evening. This is the best thing that can happen to a young father. I think it makes one closer to the children. At the very least it makes Dad appreciate Mom’s daily activity.
Travel with kids
When the kids were very small we typically vacationed at one of the Kentucky State parks. We visited many over the years. Kentucky does a great job with their parks and they are very family oriented.
When our children grew and matured we took other longer trips. Some friends of ours sold everything in Cincinnati and bought a small motel about two blocks from the beach in Myrtle Beach, South Carolina. Over many summers we visited them and rented a couple rooms for a week or so and visited Charleston.
The rock, stick and bush tour consisted of Black Hills, Mt. Rushmore, Yellowstone, Jackson Hole, Jackson, Wyoming a lot of Nebraska and a 500 mile side trip to the confluence of America and then home. Two weeks and a lot of driving. In subsequent years there was an old house tour to Washington DC and Monticello that ended in Myrtle each for old times sake. Good family trips involve a lot of argument, fast food and eye-popping credit card bills but are worth it. And make great memories.
Travel without kids
We traveled without kids also to Minnesota, to Alaska, to California, to Florida, to Oregon, to Washington, to Maine, to Massachusetts, to Virginia, to North Carolina, to New York and Vermont. We traveled without kids to some of the same places where we had taken the kids to see them again quietly. The Parkinson’s has slowed travel.
Wonderful memories and great times and great food are a wonderful life.
Words of love Softly spoken Like clouds above Drift away What shall I say? To let you know the way I feel Should I cry out loud that love is real? Or simply reveal Forever my love
Time alone will tell us Lovers born in May May grow bitter and jealous Faded and gray What shall I say? It’s not another lovers game It doesn’t seen to have a name It changes and remains the same Forever my love, my love
Yesterday’s projection will never really know But tomorrow’s recollection will surely know It was so Between us Ain’t no other way Time has seen us Day after day What shall I say? That isn’t in the way I act That will carry through the years intact I’m lookin’ forward to lookin’ back From further in down the track Together in fact Forever my love, my love
She caught me by surprise today. Telling me about this song by songwriters Carly Simon & James Taylor. Lately occasionally in the midst of the corona virus catastrophe, she’s been playing old albums as she puts her office/sewing room in some sort of order. Various moods float through our house.
She also found this picture of us on our wedding day. (Goodness, we were thin then!) She made that dress. It was a wonderful day that I have little memory of. That is sad, is it not? I did not keep all the minutia of that day in my heart as she did. I remember it was HOT.
We were married in late August in Ohio. Long enough ago that A/C was advertised as an important feature of bars and other gathering places.
Today, almost 50 years later, I reflect on that fact and the wonderful times we have had. And look forward to the years we have left and I wonder if I am able to keep the minutia in my heart as her ability to do that fades. I pray that I can. To help her remember later and never correct her recollection, merely help her weakened mind.
Forever my love. That was our vow to each other. Forever. That is love. Her disability now is the reason we were brought together then. He knew she would need me. For that I am grateful. I did not think I would be when we first learned of the Parkinson’s but with each passing day I realize the gift He has given me.
Adjunct_Wizard 