We have been caregiving for my mother with Alzheimer’s and Vascular Dementia for a year and a half now. It was a difficult family decision and we knew we’d be making sacrifices when we made it, but obviously we didn’t anticipate quarantining at home together to protect her health during COVID-19. After a few weeks, the absence of all our normal frameworks upon which to frame our days made time seem to stretch and melt like the Salvador Dali clock.
Parallels emerged in my metaphoric mind between my mother’s progressive confusion and disconnect from reality, and the deterioration of the rest of the family’s normal sense of time and space. I decided to try writing an essay from her point of view based on some of her language and my understanding of her symptoms. It was inspired by, and submitted to, a wonderful project called “Letters from the Pandemic” aimed at capturing text and art time capsules of this unique yet oddly familiar time of upheaval of human society.
Dementia is a slow and relentless thief, and it’s nothing short of gut-wrenching to watch a beloved parent’s formerly massive intellect disintegrate before your eyes daily. I broke down randomly in Lowe’s the other day mourning my fellow plant-clearance-rack-addict home improvement buddy.
But glimpses of personality bubble up and pop at the surface at surprising times. Old inside jokes become new shorthand for forgotten labels of ordinary objects, and in this way, new languages are created. Essential character is shrouded, cloudy perhaps, but true. Melody and scent, food and touch and texture, temperature and humidity, and tone of voice, offer reliable inputs that reassure a slowly dying brain shrinking into its reptilian roots.
Gone and not-gone, she is mispronouncing her name, which is taped and Sharpied onto her walker, with a painfully beautiful childish glee, tasting and rolling the syllables, giggling, over and over. She once testified before Congress, and photos of her with notaries line the upstairs hall. It’s impossible to tear away from their knowing eyes, holding the memory of her former self.
Impishly I admit that a certain freedom lies in being forgettable, and I may wear several personalities in a day to accommodate her beliefs and my convenience. (I am all of the other characters mentioned in the letter. Except for the cat, that’s Simon, and he really does meow prodigiously first thing in the Tuesday-er, morning.)
I hope you enjoy mine and the other letters in this project. There is some outstanding work in there. The plan is for it to be submitted to the Library of Congress.
Shout out to @MelissaFoxMedia for her incredible aesthetic and for initiating this project. I am truly honored to be included.
Visit Letters from the Pandemic here:
#lettersfromthepandemic