Everywhere I went today — the waiting room for my dad’s radiation appointment, the line at the pharmacy, the coffee stand at the grocery — everyone was arguing about “the dress.”
I don’t know what causes people to see the colors differently. I’ve read a couple of different theories. And dueling, over-educated baristas each presented me compelling, but opposing, scientific arguments while making my soy latte.
But I do know is this: The battle over whether the dress is white with gold stripes or blue with black is a free ticket to tour life in dementia-land — where perception and reality are frequently at odds.
My husband is a jukebox of bad jokes and cheesy puns and one of his standard oldies goes something like this:
Q: Why is it so easy to have an Easter egg hunt for Alzheimer’s patients?
A: Because they can hide their own eggs.
My mom — who has Alzheimer’s and vascular dementia — has always been my husband’s biggest fan and still prods him once in a while to tell the one about the Easter eggs.
But memory — misplacing things or forgetting someone’s name, even your own — is only part of the horror of dementia.
Just as bad, at least for my mom, is how dementia changes the way people view the world around them.
My mom studied art for a couple of years after high school and she has always considered her easel and paints more essential household furnishings than either a bed or a table and chairs.
She never tried earning steady money from her artwork until she thought I needed braces to close a gap between my front teeth.
Dental wasn’t covered by my dad’s health insurance and my parents couldn’t afford the braces, so mom placed an ad in “Yankee” magazine offering to paint people’s homes on one of the hundreds of pieces of slate roofing someone had abandoned in our barn years before.
She did well. Word spread and it led to real estate agents and landscaping companies contracting with mom to paint watercolors and acrylics for their clients.
Decades later, when mom and dad moved in with us, there was no room for her easel, but I’ve kept mom well stocked in art supplies. She has spent many afternoons on the couch sketching something from memory or painting a flower I snapped fresh from the garden.
But as her dementia advanced, her artwork has changed.
It’s unrecognizable, gloomy now.
Part of it, mom insists, is because she can’t control her hands. She doesn’t have a good grip. And that appears to be true. The faces she draws are now generic, the veins in the leaves of her trees are missing or haphazard squiggles.
Everything exists in a washed-out fog.
But worse, I think, are her color choices.
In mom’s dementia-land, the sky in no longer blue. Or, if it is, mom can’t recognize the blue pastel crayon or the blue paint to reflect that in her art.
Her work is now dominated by darker shades of orange, purple and green — no matter the subject matter.
I never mention this to her. Just the opposite, I try to oooh and ahhh over every piece because she needs to paint as much as I need to write this blog — these life-long passions of ours are keeping us each grounded during this time of upheaval.
But mom is embarrassed. She gives up painting or drawing for weeks at time. She recognizes her sketches and paintings don’t represent her and she’s not even sure why.
For a couple of years, I have avoided attaching the word “dementia” to mom in front of her or dad, as if that truth would somehow accelerate the disease. My head knows this is ridiculous, but my heart tells me otherwise.
Now, though, mom has started talking to me about it, trying to explain this mysterious phenomenon that has changed her perception of reality.
“It’s like floating above your body,” she told me yesterday, raising her arm and swirling it above her head.
“I know I’m here with you and sitting on the couch, but I’m thinking about the past, living in the past,” she said. “What’s going on around me feels like it isn’t happening, like I’m watching a TV show.”
This, she said, has been particularly difficult since dad was diagnosed with cancer. She knows what is happening — dad’s prognosis is grim — but it doesn’t seem real to her.
She confided this after overhearing a phone conversation between me and a childhood friend, Brenda, who is dad’s oncology nurse. We were discussing some of dad’s symptoms and what would happen now that cancer has spread into his lungs.
When mom first heard us talking, she thought Brenda and I were upstairs, young girls again playing a game in my childhood bedroom, something she had heard hundreds of times before.
Eventually though, with all the talk of cancer, mom said she figured out she was lost in the past and came crashing back to the reality of here and now.
Time traveling like this won’t always be possible for mom. And even now, it’s painful.
I think of all of this during the great dress debate of 2015 and how passionately people are defending reality as they see it, even in something so meaningless — an ugly white dress with gold stripes vs. a just-as-ugly blue dress with black stripes.
Imagine being trapped in dementia-land, not even knowing for certain whether the sky is blue.
mom and dad move in 