Wiggling in My Seat (4-min. read)

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If you care for a loved one with cognitive decline or dementia, feel free to raise your banner and sing the anthem of this blog post with me.

At least 2-4 times each week, I find myself wiggling in my seat. Not literally, mind you. But wiggling, nonetheless – in my mind, in my heart. I wiggle in the moments that my dad’s cognitive decline takes over and runs with scissors at full speed – and the result is some outlandish, offensive, yet sometimes also funny comments he makes to strangers and new people in our lives. Think nurses, doctors, the little lady in the grocery store line.

For example, he regularly loves to joke about drinking cheap wine. Now, Dad has rarely, actually consumed alcoholic beverages in his lifetime. Dad probably kept the same bottle of Manischewitz© wine in the fridge for, like, 20 years. He’s a former church deacon and choir member at our family’s church back home in Virginia. A retired public school principal, deeply respected and admired by his former colleagues and students. A trusted confidante and friend to many.

A lush he has never been and is not in the present day.

Yet, pretty much on a daily basis, he raises an eyebrow and slyly says, “You got any hard liquor?”

Not a joke.

So, when he meets a doctor for the first time and is asked, “How are you today?” and he jokingly responds, “I’m doin’ okay. Just enjoying my cheap wine” … welllllllll, you can imagine my utter horror. I usually want to crawl under a rock or exit stage left. But more than that, I’ve come to recognize that a huge reason for my wiggling is that I want to correct him, set the record straight, ensure the doctor doesn’t label him as an elderly lush.

In other words, I want to edit him.

You see, I edit words to make a living. Book manuscripts, academic papers, website content and more. It seems to be in my bloodstream. I can’t help myself. Even when I’m not trying to do so, I’m editing. Improving communication for understanding. Delivering clarity. Ensuring accuracy. On road signs. Restaurant signage. People’s t-shirts. You name it. I edit it.

And I love every minute of it.

I especially have a driving urge to make the inaccurate accurate.  And this, I’m learning – this –frustrates me when caring for Dad at times. Because I am also learning that I cannot really edit my dad – especially when his cognitive decline shows up in the room.

It prompts him to see things that are not there (“We see that same car every day! And that guy wearing the same blue shirt every day!”). Concoct stories that simply are not true. Tell very off-color jokes to strangers. Share the same set of old stories every day and every night. It transforms him into a caricature of himself, sometimes cussing first thing in the morning. It throws his filter and good judgment out of the window. A lot.

For example, very recently – and I’m not kidding – he told a nurse we’d just met that he’s a recovering alcoholic. With the saddest, most wistful look on his face – as if he was actually remembering such a time -, he made this statement. And he was quite believable, as usual. To which I exclaimed, “Daaaaaaaad, nooooooooooo!!!  Missyyyyyyyyyyy, noooooooooooo!!! Missy, do NOT put that in his chart! It’s not true! Dad, what are you TALKING about??? You’ve rarely had any alcohol over the years. You were certainly never – and are not – a recovering alcoholic!!!”

My heart was racing, my eyebrows jumped to the crown of my head they were raised so high, and those veins in the side of my neck popped out while I protested loudly.

I know my blood pressure was up.

Admittedly, this was a rare event for us – a moment I felt I absolutely had to correct his words on the spot. And, yes, when I did so, the nurse stopped raising her eyebrows and breathed a palpable sigh of relief. Out loud.

As frustrating as those moments may be sometimes, I’ve come to understand that my frustration is really sadness – sadness because I cannot fix my dad’s cognitive challenges and restore him to the Dad I’ve known all my life. The dad who was at the top of his game before my mom died almost 8 years ago, and then my brother almost 3 years ago. The dad who fixed anything broken. Cooked like a pro. Cared for so many others – Mom, cousins, aunts, elderly widows without children, neighbors.

The dad who was Dad before cognitive decline moved in.

Such decline is a formidable foe. It’s a Godzilla-sized challenge I simply cannot slay.

So, I’m waving the white flag of surrender. Life insists on teaching me that everything – and everyone – cannot be edited. And I’m learning to be okay with that.  I’m practicing how to embrace, not run from, my own embarrassment or shock over Dad’s behavior. Breathe through his moments of inaccuracy and just let them be. And, for a person who craves order, neatness and especially accuracy (!), that’s a HUGE stretch.

In no way do I ever want to embarrass Dad or step on his toes. I love him too much to do that. Because, more than anything, he deserves to be loved and respected with dignity. And this far outweighs my insatiable need to correct his words.

Dad’s unpredictable stories to strangers are life’s way of reminding me that, if I should live as long as my sweet daddy, I may be in the very same boat someday, drifting along that sea called cognitive decline. Seeing things that are not there, recalling moments that never happened, telling people stories that simply are not true. Maybe even sprinkling my stories with a cuss word or two.

And needing the person who will love and care for me to learn to be okay with that, too.

As you care for others – children, elders, friends, and more -, what are you learning in the process? Share your comments below.

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24 thoughts on “Wiggling in My Seat (4-min. read)

  1. Pingback: Tough Cookie | stretch & grow

  2. Pingback: Know the Script | stretch & grow

  3. Sharon Baker

    Karin, this is a wonderful and insightful piece of you. Thank you for sharing, with us all, what dementia is like from your side of the curtain. You have captured the spirit of your incomparable dad to the molecule, I love that wise and funny man. Even through dementia, he is keeping you on your toes, but also teaching you. By being one of the awesome children that your parents raised, you are generous enough to share information that many of us will need now and in the future with our own parents, thank you!

    Liked by 1 person

    Reply
    1. stretch&grow Post author

      Sharon, my sincere thanks to you for reading and sharing. And, yes: More than anything else, we are thankful for all Dad is teaching us on this leg of our journey together. Sending my grateful hugs to you!

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  4. Jermal Quinn

    Thank you so much for sharing this with us. I think one of the bravest things that we can do is to be vulnerable and share the intimate and veiled elements of things that make us truly who we are. You wanting to “edit” your father shows the great admiration and compassion that you have for him. Dementia may cloud your father’s memory but it has no impact on our memories of him.
    Your father is a great man. He loves his family, his community, his church and his friends beyond measure. I strive to one day have the same scope and breadth of impact on the lives of others, as he has had on mine.

    Liked by 1 person

    Reply
  5. Tj

    You have a way with words. I definitely have a better appreciation for what you’re doing in caring for your Dad. Thank you for sharing your journey. Looking forward to the next post.

    Liked by 1 person

    Reply
  6. Carla

    Karin, I love it! You were born to write (and edit…just not sweet daddy). Keep using your gift to write about this subject and so many others.

    Liked by 1 person

    Reply
  7. Dondra Kinard

    Hey friend. This is truly wonderful. I loved every single word. God Bless you and Mr. Booker. I remember when my grandma went through the same thing. Take care.

    Liked by 1 person

    Reply
      1. Alicia Johnson

        Give your Dad a kiss for me. I only have fond memories of him whenever we came to Virginia. May you continue to be at peace.

        Liked by 1 person

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