karin dancy

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.