Learning to Be a Lucid Window Washer
“Just sit and watch him,” said his wife, with affirming nods from their children. They were heading out to enjoy some respite from the demands of caring for a terminally ill family member.
It was the same set of instructions my hospice supervisor gave me about spending time with this patient. It’s uncomfortable to stare at a very ill, elderly man who is restricted to bed for hours on end. I wanted to help, but all I could do was sit and watch his chest rise and fall beneath the bedcovers.
Suddenly, he jumped out of bed, dashed to the kitchen, and began stirring ingredients for homemade chocolate chip cookies. I couldn’t believe what I was seeing. I followed quickly behind him. He started talking about how this was a special family recipe, and he was the only one who made these cookies for his family.
While he stirred and blended ingredients, I was transfixed by this dramatic change in the man. I could barely say anything, let alone comprehend his actions. Just moments before, he was unresponsive to my presence. Now, he was demonstrating fluid movements and stimulating conversation about cookies.
After the first batch of cookies came out of the oven, the sugary aroma filled the kitchen. They were perfect. And then, as suddenly as he had arisen, he returned to bed. He died the next day.
This pre-death burst of mental lucidity and physical activity is called terminal lucidity. Terminal lucidity is not the same as paradoxical lucidity — when Grandma, who is sitting at the kitchen table, suddenly remembers all the grandchildren’s names and what she had for breakfast, despite her long-standing diagnosis of dementia. Grandma may return to her baseline dementia after a few moments, leaving bystanders dumbfounded.
My experiences of lucidity with Parkinson’s disease aren’t so dramatic. I have days with the “beast” when I can’t think clearly and everything seems muddled in my mind. Then, there are afternoons when everything in my life seems to flow effortlessly: thoughts about writing, thoughts about plans for the garden, everyday thoughts. By 4 p.m. most days, those lucid moments are mostly gone, and I descend into my usual afternoon “off” period.
I do so enjoy the clarity of the lucid window, no matter how brief.
Cognitive fluctuations are a distinctive diagnostic feature of mid- to late-stage Parkinson’s, and they’re a core feature of clinical diagnostic criteria. These fluctuations of paroxysmal deficits of cognitive function alternate with alertness and lucidity. The pathophysiology of cognitive fluctuations remains unknown.
According to the Parkinson’s Foundation website, “Cognitive impairment is different from dementia, which is when cognitive impairments occur in more than one area of cognition, leading to more severe loss of intellectual abilities that interferes with daily, independent living. While approximately 50 percent of people with PD will experience some form of cognitive impairment, not all lead to a dementia diagnosis.”
Many of my columns address preventing the “beast” day by keeping the well of resources from running dry. An added focus helps to crystalize both meaning and purpose regarding the practice of refilling my well of resources: I need the resources to help me expand the lucid window. I become a “lucid window washer,” in a sense, so it’s worth taking the steps for well resource optimization.
First, I can’t cross the threshold of emotions. When my Parkinson’s emotions run amok (caused by physical fatigue, unexpected stress, or overstimulation), then I can find myself pushed to the threshold. My mental and emotional focus must pull me back from the precipitous edge. Otherwise, I end up in a free fall, spiraling into the vast cavern of dysregulated emotions. I lose myself there, lucidity nonexistent.
Second, be aware of when lucidity occurs and the circumstances that lead to the experience. Hold those as part of a sacred process.
Third, don’t expect lucidity to be present all the time. I can’t flip the “on” switch and have lucid moments on demand. I can’t grasp or flail about to create lucidity; I must follow a steady, patient, curious attitude that is simultaneously kind and sacred.
These are tiny steps of progress with lucid window washing. Like cleaning the speck of a squashed bug off the windshield, it’s a small improvement in clarity that, when repeated, makes a difference.
As I stay prepared for lucidity, I am also cognizant of the many triggers for Parkinson’s brain fog and just as many daily adjustments that can minimize the impact.
I can’t think clearly all the time, which, for a guy who lives to think, is a bit of a bummer. So I cherish the lucid moments and act in a manner that encourages more of them.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Kathleen L. Karafonda
Very helpful version of the fluctuations I experience...such good writing! Thank you!
Janne Fredsbo
How I enjoy the writing of yours. Thank you so much.
Dorothy
Thank you for sharing your experience. We have described a "wonder window" to my mother's doctors, but they don't seem to appreciate what is happening or how desperate she is to lengthen it. We would love to hear of ways that you or others have been able to stretch out these miraculous windows of lucidity.