Alzheimer's is a mother fucker. I apologize if that offends you but it is. It's a haunting disease. It's a demon that slowly possesses the victim. It's the Great Pumpkin on Halloween night wrenching every ounce of dignity and happiness from you until all that's left is the empty husk of despair---like the dried hollow carcasses of the left-over summer cicadas that crunch below your feet. Their magnificent song now smote. Dementia is not the romanticized tearjerkers with Jessica Tandy twittering around looking for long lost school books in Driving Miss Daisy or the stylized melancholy of Julie Christie's evaporative performance in Away from Her. No, this disease is much crueler than either.
As a caregiver, I often feel like I am on the 102nd floor of the World Trade Center on that bright azure Tuesday in early September of 2001. Like a thief, my mother's illness came upon both of us suddenly. I was going about my life; doing my job, going on vacation, playing my games and watching television. When neurological disease attacked. At first there was confusion and pandemonium then the shrieking realization that both our lives would be forever altered.
As the bricks of memory crumble one must knit as much of life together as possible. As the disease pushes your loved-one deeper into that small space you feel helpless. You watch as the light of understanding fades from their eyes. I imagine having Alzheimer's is like watching a disjointed movie filled with images and instructions. All of them coming at you in rapid succession. Random words next to images that you think you should know but somehow you don't. That improbable reel now playing in my mother's mind has began to to tell her to wander---a marked symptom of dementia. Usually the person, in his or her mind, is looking for something specific. With my mother it is the mail. She wants to be useful. To pay her bills. To be functional. The tentacles of a life, no longer tenable, are reaching out to her. She tries to feel normal.
We recently acquired a new neighbor who is doing extensive work on his yard. While nice and commendable, it has affected the predictable balance that was our morning routine. Soon after breakfast, from about 9 to 11 a.m., my mother gets up out of her seat and walks outside. She stares blankly across the yard with her arms neatly folded behind her back. She walks to the mailbox, bends over at the waist looking for something inside that may hold a glimpse to her former self. When she doesn't find it, she closes the box and continues her walk. She makes a circuit around our house then returns inside to her recliner, only to pop up ten-minutes later to go back outside. You can time it: no more or no less than seven-to-twelve minute intervals. Up out of her seat, hands neatly folded behind her back walking outside.
Intermingled with this wandering is the random changing of her clothes. For some reason, she's started changing her clothes multiple times a day, sometimes two or three times within an hour. She'd get up from her recliner, go upstairs, change, and return sporting a new outfit and a wig. Now, my mother has always loved her wigs. And I don't mean a few ornamental wigs like switches or chignons. My mother had long wigs, curly wigs, sassy wigs, dowager wigs, solemn wigs, flirtatious wigs, Afro wigs, straight-haired wigs, church wigs, cookout wigs. Wigs for all occasions in many different shades and textures. My mother was always a well-dressed woman. She was born of that era when women dressed to show their status and education; to show they were not "loose" or lurid, thus always evoking propriety and decorum. But now she's taken to resembling a bag lady. She's taken to wearing one of my old work shirts over her housecoat, layered over a pair of denim jeans, layered below a skirt that would be at home at a hideous skirt convention. Our family always knew her looks were uncompromising, but now her patrician style has been breached by disease. Yet, she still has an attachment for those wigs. So with each costume change she dons a new one and descends our curved staircase as if she's Queen of Romania.
But as soon as she sits down she takes the wigs off and completely forgets them. As her parade of motley fashions progresses throughout the day her wigs pile up on the end table like some furry creature in a horror film. I envision them forming some hairy amalgam coming after me as if I was Karen Black being chased by a demonic idol in Trilogy of Terror. Truth be told, I hate those wigs. I always have. They are the source of one of my greatest teenage traumas. It happened quite surreally on a Wednesday afternoon. Not unlike 9/11, it came quite unexpectedly. I was just in the beginning stages of experiencing "outcast status" in the ninth grade. At the time, Carrie White was my hero and I fantasized I had magical powers and would one day rain holy teen angst-driven hell down on my classmates. I had stayed late after school because I didn't want to be at home around my new family---My mother had remarried after my father's death and my stepfather and I were at odds. I got a ride home with some classmates. As we pulled up in the driveway, one of the kids pointed toward my backyard. My eyes widened in sheer fright. My mother had taken this occasion to wash her wigs and hang them on the clothes line (which was never used for clothing because we had a Whirlpool washer and dryer so what the bloody hell would she hang those wigs out there like that for?). Somebody asked if we were skinning raccoons and the entire car erupted in laughter. If I only could have withered into nothingness. I remember being so angry at Mother. She did go through a Jheri Curl phase where I actually wanted the wigs back, but that's another blog.
It's funny how when life gets dim and dour it is the small things that keep us going. We rush through life feeling angry and jilted, percolating on emotions of fear and loneliness; discharging unhappiness to everyone we meet and favoring complaint and complacency over love and adventure. I try not to live like that. Not to say I'm some radiant beacon of hope in a thickening fog of woebegone. But life is simple, really. "If you're breathing you're already better off than the dead" as my mother likes to say. And now that her disease has taken away so much of her---of us---it truly is the simple that I focus on. So I just sit back and watch in wonderment the show that is my mother's illustrative incarnations on our kitchen runway serving Miss Havesham realness.
These fleeting moments are just either the foam needed to keep the flames at bay, or the snippet of air drawn in to soothe the heat; a hushing cool on my face that whispers a stillness to life that says these moments matter. That it's not the raccoon-looking wigs on that clothesline from years ago. But the pile sitting here on the end table today that's most important.
