How Dementia Defies Our Expectations

and How Caregivers Can Cope

Hello, friend.

Before my late husband’s stroke, I thought dementia was a linear decline—a steady erosion of abilities and awareness. But that’s not what Tom experienced and it’s not what my father is demonstrating. I’m learning that dementia operates more like a faulty electrical system: some circuits remain perfectly intact while others flicker and fail, often unpredictably.

My father’s sense of humor is 100% intact. Yesterday, when a nurse asked what he does when his arthritis causes pain, he didn't miss a beat before quipping, "Oh, I complain a lot." When she asked him what he did for work before retiring, he answered, “Well, I got a degree in engineering, so naturally I became a writer.” His raised eyebrow indicated the non sequitur was deliberate. His timing was perfect, his delivery dry and deliberate. In these moments, his personality and wit are undiminished.

But other times, he veers off the conversational track unexpectedly. A few minutes later when she asked him if he knew what day it was, he launched into a long-winded explanation of the pricing structure he had used for his consulting business twenty years ago.

I've come to see dementia as a series of disconnections rather than a wholesale shutdown. Certain neural pathways remain robust while others fray and detach. My father's social skills and conversational abilities have proven remarkably resilient. His procedural memory still allows him to button his shirt and tie his shoes with the same precision he's always had. But his ability to create new memories or maintain orientation to time and place has become tenuous at best.

When I arrived at his house yesterday, he marveled at the vast pile of mail spread across his dining table. He said the stack of envelopes and circulars had been so thick he had to shimmy them out of the mailbox one at a time. “All this in one day!” he exclaimed.

“Are you sure that’s just one day’s mail?” I asked. He was certain he’d been checking his mail every day. More likely, he’s lost track of the days and the mail had been accumulating in the mailbox for a week or two.

Perhaps the most poignant evidence of this inconsistency appears in the notes I find scattered throughout his house. Written in his still-meticulous handwriting, perfectly straight on unlined paper, these notes offer a window into the disjointed workings of his mind. One note I found last week began with "oil service"—a reasonable reminder. It continued with what appeared to be a shopping list: "eggs, turkey, bread" and abbreviations that may have correlated to grocery stores—or maybe not. Then, inexplicably, it transitioned to a catalog of cheese types: "cheddar, gouda, Parmigiano, etc." And finally, the mysterious single word: "bowls."

I asked him about the note. “I can’t make any sense of it,” he said, shaking his head. “Can you?”

Looking at these notes, I can almost see his thought process fragmenting in real time. He begins with a clear purpose, but as he writes, his focus shifts and wanders down neural pathways that no longer connect in logical sequence. The notes themselves become a metaphor for his cognitive experience—starting with clarity before drifting into disconnection and randomness.

This inconsistency can be maddening for caregivers. How do you calibrate your support for someone who might engage in sophisticated wordplay one moment and become disoriented the next? There's no single approach that works consistently because the person you're caring for is, themselves, inconsistent. Vision, hearing, and mobility losses complicate matters.

Here are a few suggestions that might help:

1. Meet them where they are, moment by moment. Rather than correcting or contradicting when your loved one is confused, try stepping into their reality. When my husband forgot he’d had a stroke and thought he needed to go to work, I learned to say, "Your boss called and said you don't need to come in today" rather than arguing about whether he still worked. This validation-based approach preserves dignity and prevents frustration on both sides.

2. Preserve the connections that still work. When you discover areas where your loved one still functions well—whether it's humor, music appreciation, or discussing certain topics from their past—actively cultivate those opportunities for connection. These moments where the person shines through the fog of dementia are precious for both of you. I make it a point to share jokes with my father and bring up topics where his expertise remains intact, creating islands of normalcy in our interactions.

3. Acknowledge their frustration. When I show my father how to make the phone that is mystifying him do what he wants, I do not say, “See, it’s easy!” even though it seems easy to me. I say, “Oooof, that is frustrating. Maybe try doing this,” and them I demonstrate the easiest way to do it without pointing out how easy it is for someone without dementia.

4. Be patient with yourself. Acknowledge that you are suffering and be patient with yourself as you learn to work with your loved one’s dementia. You will mess up—I sure do. But you’ll also get things right, so celebrate those wins, no matter how small they are. You’ll need to experiment continually to adapt to their capabilities.

The journey of caring for someone with dementia means constantly adjusting your expectations and approaches. By honoring both who they were and who they are now, we can maintain connections even as the cognitive landscape continues to shift beneath our feet.

If something here resonates with you, I'd be honored if you shared it with someone who might need it today. Let’s help each other along on this journey. I'm grateful our paths have crossed.

Onward, in hope and solidarity.
Elizabeth

P.S. The sculpture pictured at the top is by Lucas Zwodynski.