Growing up Catholic we learned about death rituals as children. Growing up Irish-Italian-American we learned about the deep emotional experience of surviving the death of a loved one.
Strong memories move through my consciousness: the prescribed hours of a wake (the viewing of the deceased), the ornate casket selected by those who survive, the funeral mass essence of incense signifying sanctification and purification, the wailer women dressed in black waving white hankies in the back of the church and the starkness of the burial site draped in bright green turf to cover the deep hole waiting for mourners to leave to attend to their family gathering.
Somewhere in the middle-late stages of my mother’s long-term memory care I read an obituary for a friend’s mother. Connecting only occasionally, my friend was the distant kind and her family I’d never met. For some reason, I’m compelled to attend the wake. My compulsion is powerful, unstoppable; so on a rainy spring afternoon Tom and I drive to the funeral home.
Greeted by the funeral director we’re waved through the all too-familiar steps. Signing the guest book, taking a mass card memorializing the deceased and getting into the receiving line to kneel at an open casket and pay respects before sympathies are shared with family who line in front of the funeral bouquets on the far side of the casket.
As the receiving line moves slowly forward, I catch glimpses of the open casket. The woman lays still; her face possesses a shiny glow and sports bright red lipstick. I wonder is it a shade she might have worn before her death? Did the mortician choose wisely? Each flash of her image, however, leaves me unsettled. I don’t understand why. I don’t know this woman, I’m only there to honor my friend and show respect for her loss.
But with each step forward I feel gravity closing in on me. I become aware: the clamminess of my palms, the rushing sound in my ears and darkness slowly descending over my eyes.
Standing next to me Tom breaks my fall.
Moments pass feeling like hours and when I come to my strongest instinct is to bolt. Suddenly I need to remove myself from this situation. I stand, steady myself and move quickly through the crowd with Tom’s strong arm guiding me. I pass by questioning glances and hear snippets not intended for my ears: “ Is she all right? Who is she, anyway? How is she related? She has no business…”
Plunging through the funeral home doors and into the damp, fresh air I gulp hard. Then I begin to cry a raw and intractable sobbing, making it impossible to answer Tom’s caring and questioning stare as we make our way to the car.
I can’t comprehend the depth of my grief: the grief of losing my mother through her dementia, the grief of watching someone I love forget that they love me.
Excerpt from “The Day the Wheels Fell Off”
I pull up to the side door with direct access to the memory center. From this vantage point I can see her window. I can see the outline of her heavy wooden dresser and the blue lamp, a treasured gift from my father. I can see the television that’s no longer watched. But I can’t see her. Some days I park and go in. Other days the pain is just too great, I slide my foot to the accelerator and bolt out of the parking lot. I drive to nowhere, sometimes grieving the depth of my loss and other times cursing the immense brutality of her loss.
Dementia and Alzheimer’s are perpetually evolving diseases requiring the act of caregiving to be collaborative and codependent. As an individual with dementia progresses in the disease, so does the caregiver. They are entwined in a cruel dance.
Science tells us that no progression is ever completely linear. True for both the primary caregiver and for the individual suffering with this disease. But with dementia and Alzheimer’s the trajectory is the inverse of most progressions.
As one declines, the other must advance.