#TheDress: The battle over reality — white/gold vs. blue/black — is a free ticket to tour life in dementia-land

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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.

15 thoughts on “#TheDress: The battle over reality — white/gold vs. blue/black — is a free ticket to tour life in dementia-land

  1. I just bought my mom an adult coloring book and pencils. I don’t know whether she’ll use them. She was always very crafty and creative, but lost sight of all that when she allowed care-taking (alcoholic sons, husband with Alzheimer’s) to take over her life. Now that she has no one to take care of but her cat, I’m hoping she might find some joy in the creative. She said she doesn’t think she’ll be interested, but asked that I send them to her anyway, and she’ll give it a try. If she does fiddle with them, I’m curious about the colors she’ll choose.

    Liked by 2 people

    • I’ve asked docs and a nurse practitioner about the color thing and they just give me blank stares. I think many people experience dementia in different ways… I hope your mom uses that creative outlet. Art works for my mom, but the best thing by far I’ve found for my dad is a Kindle…he has macular degeneration and being able to adjust the font size of whatever he wants, whenever he wants it has been a boon…We got him a fancy one, but wish we would have stuck with cheapie…because the only function he uses is book reading…

      Liked by 1 person

      • Oh that darned television turned to level 100!! Oy! Any distraction welcome. I see your cat (who looks very much like one of mine — Jack)…I find our pets are the best distraction for mom. She will stop, smile, pet, talk to the dog or cats no matter what else is going on. My mom won’t use the Kindle..just cause she can’t figure it out.

        Liked by 2 people

  2. Beautiful piece, thanks for same. My son, over the last four months, has been diagnosed with schizophrenia and much of what you have written about your parents applies to him. I also find your piece poignant as I am a writer and photographer. From what I’ve seen thus far, dementia, art and schizophrenia all seem so similar, that it’s as if different strands of yarn have become tangled in the same basket. Or maybe not. It seems each time I’ve figured something out about any of these topics, I find that I’m not quite right. Maybe a basket of snakes and not yarn? I do feel like your thoughts serve to shed some light on these issues, and am grateful for same. Thanks so much.

    Liked by 1 person

    • Hi Michael, I appreciate your view of this — yarns and/or snakes. Indeed. It’s maddening to keep up because of conflicting information and just day-to-day changes in the person. Before I was wrapped up in this, I thought dementia was a gradual slide downward…which hasn’t been the case with my mom or dad (who also has vascular dementia). Lots of jagged movement on the up and down scale. I know very little about schizophrenia but I hope the medical community is making advances in treatment faster than it is with dementia…although, as you point out, they may very well go hand in hand.

      Liked by 1 person

  3. Trapped-that’s how I see my mom too. Only now her voice is also trapped and she speaks in a language I can’t understand. It sounds like it could be English, every once in awhile there is an identifiable word, but the rest is gibberish. The horror of it all.

    Liked by 2 people

    • Lisa,
      Losing all ability to communicate is a horror — both for her and you. I’m so sorry. Have you seen the Julie Moore move yet? I haven’t. I sort of wonder if it white-washes it all. I’m almost certain it will with the $$ aspect. That woman was a professor or something..and almost certainly had great insurance and husband who brought home a great income. Most people don’t have those luxuries. I don’t know your situation..but even with my parents’ frugal life (and they did live frugally), illness and longevity eat savings quickly…leaving family not only stress to provide care…but mourning this slow, painful loss…and trying to figure out how to pay for everything. I want a movie about that. About everyday people facing this horror. (I think I’m really angry today…I’m expressing anger everywhere. Apologies).

      Liked by 1 person

  4. Your write very well, Amanda. Your stories pull the reader in.
    I relate to your mom. For years after a car accident, I often lived in an alternate reality, but even that was fractured. . With various injuries and sleeplessness, I floated in and out of reality, sometimes desperately trying to make sense of what was being said or done around me. It often became much less painful to simply give up trying.
    It makes me empathize with individuals who have dementia, and with their families.
    May you find the strength and stamina to carry on. God’s already given you a great blessing in your husband, as you will need that support and love to do what you’re doing for your parents.

    Liked by 1 person

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