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July 10, 2021

Dementia: The First Signs of our Waking Nightmare.

I sit alone in an almost eerie silence nine months to the day since my beloved husband, Trond, drew his last, labored breath.

All that time, and for so much more before, I, myself, was silent, lacking the will and way to express the waking nightmare of our life.

Trond’s debilitating dementia robbed us, ever so quickly at the end, of much more than the noble man he had been for some 80 years. Caring for him day and night for the last many months of his otherwise independent life all but took my breath away. I still don’t have it fully back.

Nonetheless, a frighteningly empty Monday looms before me—with, okay, no legitimate excuses left to drum up. And so I open my phone and begin to document the demon that affects one in three of us who make it to age 85.

Difficult a story as it is, I can feel my heart leap at the chance to again express myself—to share the terrible universality of my particular experience. Yes to that, after three years of near silence and, sometimes, horrific pain.

Thank God for the gift of words to offer what this dear heart of mine is becoming too full to contain. My love and a shoutout of great gratitude to my Baldwin School English teachers and advertising Creative Director, Kaye Christian—all surely dead by now. How blessed I am that so many generous women knew the value of teaching their students to write, and in a way that can be heard and helpful to others.

My nightmare—if not yet Trond’s—began about 20 years ago when he turned to me one day and asked quite innocently out of the blue, “What is an eggplant?” My heart sank, as it was to do many times over the next several years.

Granted, an eggplant was not a very popular American vegetable (actually a fruit) and Trond, who was born and raised in dark, frigid Norway, had probably never seen that sun-loving nightshade until he emigrated. But the Trond I had married 30 years earlier knew perfectly well what an eggplant was. And now, suddenly, he didn’t. So marked the beginning of the end of life as we’d known it.

Many people claim that dementia doesn’t occur to them until it gobsmacks them over the head. Often, they write off slight stumbles as “normal aging.” While I don’t generally agree with this old adage, in that case, maybe ignorance is bliss.

But from our unnerving eggplant moment on, I knew exactly what was going down and had to work hard not to be looking for the next worrisome sign around every murky corner. But like with the puzzle where you finally see—and can then no longer not see—the monkey in the tree, that was a losing battle for me.

Trond’s mother had fully developed dementia at around the same age Trond’s signs started ramping up. We both knew it was a possibility for him and we believed there wasn’t a damn thing we could do about it. Since I can’t remember when we talked about it openly for the first time, it must’ve happened pretty organically. The topic was hard but not taboo…at first.

What I do distinctly remember is the day years later, in the summer of 2016, when we had “the talk.” We crossed a vast green lawn toward two bright Adirondack chairs by a lake at the Prince Edward Island inn where we were staying. We’d gone on a rare mini-vacation from what most people would’ve said was already a vacation, a couple of months at our Nova Scotia cottage.

We wanted to get away from the everyday in order to talk frankly without interruption about Trond’s forgetfulness and confusion. It was a matter we couldn’t help noticing had increased dramatically, but which we had assiduously avoided addressing lately. It had gotten hard.

Still, we both knew it was high time to get real with it. So we had set aside that afternoon, first outdoors at the inn and later on the stunning red sand beach nearby, to address it head-on.

We settled as best we could into the hard wooden chairs and took in the warm summer breeze coming off the ocean. There was a short silence as we hesitated before plunging into this conversation we dearly wished we didn’t have to have.

Then Trond, ever the gentleman who, unlike his admittedly potty-mouthed wife, rarely used even a mild expletive, turned slowly to me. With the most pained expression I’d ever seen on his beautiful, Nordic face, he cried out from the depths of his being, “I am losing my f*cking mind!” There wasn’t much more to say that day.

We walked slowly across the lawn to the beach, completely empty except for a professional photographer. He told us he was there to record the striking sunset. As Trond and I sat quietly holding each other in the fading golden light, the dear man asked if he could take our picture. And so he did, beautifully documenting the beginning of the end of us in our favorite part of the world.

And so began the odyssey that swept us and our two devoted children up and away for the next four years. Thank you for bearing witness to my sorry story, which I’ll pick up again soon. And I look forward to your comments more than ever.


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