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!
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.
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!
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.
Anna also put together this collection of snippets of various sources.
… 50 years later here we are. Happy 45th Edie and Tom – May the sun always be shining on you and your family.
I can identify with everything you said. This is our 48th year of marriage, and it is year 21 of Parkinson’s. I grieve for the man I married, yet I’m so thankful for the man he is today – calm, peaceful, yet one step away from leaving this earth. Thanks for your candid post.