Spotlight: Looking Past Dementia by Marysue Moses
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In Looking Past Dementia, dementia educator Marysue Moses shares the powerful insights she has gained from more than twenty years working alongside individuals living with Alzheimer’s disease and other forms of dementia. Through deeply human stories, she challenges readers to look beyond symptoms and diagnoses to recognize the strengths, emotions and humanity that remain.
Excerpt
Living with an Uncooperative Brain
How are our brains beguiled
—William Shakespeare, Sonnets, No. 59
Evelyn
“I feel like I have to meet the train, but I don’t know what the schedule is.” Out of the blue, Evelyn confides this to me one day as we pass in the hallway. She reminds me of a hothouse flower whose bloom will be destroyed if the temperature, soundscape and humidity aren’t calibrated to perfection. On the other side of her fragility, Evelyn is a trooper, a good sport with a healthy sense of humor. Still, her sunny moods can flip over into nerves, morph into anxiety, and escalate to full-fledged agitation.
Evelyn loves the color purple. Today, she sports purple pants, a long-sleeved purple velveteen top, and her trademark grey felt hat.
Her tone is resigned yet frustrated when she refers to the train she feels she must meet. Though she is well past the point of being aware of her Alzheimer’s diagnosis, Evelyn is full of insight into what living with dementia is like. When she mentions having to meet the train, her intended meaning hovers like a cloud halfway between the literal and the symbolic. Part of her understands that she has no train to catch; it's something other than a train she’s missing. The other half believes she needs to be somewhere she is not. If only she could recall what place that is, how to get there, and where in the world she put the car keys.
Moreover, now that she thinks about it, she can’t for the life of her remember where she parked…
Another day, after breakfast, Evelyn is having a tough morning. I’ve seldom seen her struggle this much to put a sentence together. Unable to decipher her garbled speech, I’m on the verge of taking her to see the nurse when the word bathroom emerges from a sudden outpouring of nonsensical syllables. I offer to show her to the nearest restroom down the hall. Evelyn nods and trudges along, chewing her bottom lip and concentrating on maneuvering her walker. Her face contorts like a student trying to pick the correct answer on an exam.
I hold the restroom door open and follow her in. Though she can manage on her own in here, I stick around in case she needs extra help today. I lock the door and move into a corner of the small bathroom. Evelyn stops short a few feet away from the toilet, her gaze riveted on the bathroom floor.
Without looking my way, she proclaims, with surprising energy, “This floor! It looks just like my brain.”
Her speech is clear as a bell. I inspect the floor to see what she might mean. It’s covered with two-inch square, grayish-green tiles, and is dustier than one would prefer, but apart from that there’s nothing of note. Every part of the floor looks like every other part. Boring. No direction, nothing of interest. Dull, dull, dull.
Later that day, I returned to the bathroom. I couldn’t get Evelyn’s comment out of my head. I took a photo of the floor and showed it to my husband, Phil, that evening. His response was, “Huh. It’s like a crossword puzzle without any clues.”
What a valuable glimpse into the current backdrop of her mind, Evelyn had offered that morning. Her remark taught me that we must work to transform what I suspect many people living with dementia experience far too often: a landscape filled with emptiness, suffused with boredom; a stage setting full of dead ends and roadblocks; an overwhelming sense of dread, of being lost in a puzzle with no clue as to how to find the way out. Doubtless, dementia mattered to Evelyn that morning in a dark, dusty, distressing way.
I realized I needed to stretch my understanding, to consider what reality feels like for these individuals. It’s easy but unfair to blame them for being difficult and making our jobs challenging to the point of discomfort. Isn’t their chore of dealing with an uncooperative brain tougher than ours?
I learned from Evelyn and many others that there is a gift in accepting the challenges that people living with dementia may present. A door swings open, inviting us to explore, empathize, and understand that each individual is doing their absolute best given the changes occurring in their brain. We begin to imagine what might be beneficial for them. When our chosen strategy proves effective, we incorporate that tool into our ever-evolving toolbox. Of course, not every tactic works for everyone all the time. That’s why we need a substantial toolkit to handle the various situations and emotions that may arise. We expand it and increase our confidence with each person we are privileged to know, care for, and learn from.
The more I understood what dementia felt like for Evelyn, the easier it became to build trust with her, empathize with her concerns, and ensure our interactions were positive and helpful.
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About the Author
Marysue Moses is a dementia educator, consultant and former memory care coordinator who teaches practical, creative approaches to dementia care. Drawing on both professional experience and her family's journey with dementia, she helps caregivers foster meaningful connection and engagement.
You can follow the author at: https://lookpastdementia.com
