I always approached her door with caution.
I longed to see her and yet I was fearful; apprehensive.
And when I peeked into her room, there she was: the woman in the wheelchair.
She looked just like my Mother.
When I entered the room, she would throw her arms in the air, grinning ear to ear.
Hallie! You’re here! I had a feeling you were coming!
I want a hug!
Did you fly here? On a plane? All the way from New York on a plane…?
Oh my…!
For more than ten years, we replayed this scene — and every time, I was grateful;
because after that, anything could happen.
Her mood could change in a flash; her sweet, playful expression could morph into a scowl; the loving caress transform into a clenched fist– ready to strike.
During one visit, my Mother raised her hands in the air; her fingers poised like a cat’s claws. She hissed, ready to scratch. I laughed; I thought she was playing, until a nurse quickly pushed me out of the way.
She scratches, she warned.
She scratches?
She scratches.
Just for the record, my Mother did not scratch people. But the woman in the wheelchair did.
And the woman in the wheelchair was, of course, my Mother.
I was always overjoyed when I found her in a good mood; we could have an upbeat, interesting conversation. On a good day, we would sit in the garden and watch the birds; exclaim over the view of Los Angeles; share stories of past.
But even on a good day, without warning the conversation could veer wildly –like a driver who suddenly ran off the road. Her words would become harsh, outrageous, nonsensical; her demeanor strident, angry, defiant; her memories jumbled, dark, impenetrable.
It happened so many times; you’d think I’d get used to it.
I never got used to it.
Sometimes it helped if I remembered an image suggested by my sister:
Think of her brain, she said, as if it were a piece of Swiss cheese.
Swiss cheese; not exactly scientific, but I liked the analogy. When my Mom appeared calm and conversant, I pictured her gliding on the solid surface. But any moment she could plunge into the void where she could no longer
Control her thoughts;
Temper her words;
Constrain her actions;
Or even have the power to try.
But even with that image to guide me, I never fully grasped what she was up against. Only now do I realize that the smart, complex, complicated woman who had been my Mother never stood a chance.
Dementia had claimed her.
And for me to think that “she wasn’t herself” was actually part of the tragedy.
She was herself, and her self was unraveling.
Perhaps it was just too painful to contemplate, but now I realize that I had witnessed the total disintegration of her being. Her personality and psyche had literally come apart, like pieces of a jigsaw puzzle.
Looking back, I think of dementia as a masquerade. Looks are deceiving; and because the woman in the wheelchair still looked like my Mother, I wanted her to be my Mother.
I wanted her to pull herself together, literally. I wanted funny, kind, smart, wry, dignified, wise, loving.
I wanted my Mama.
This woman embarrassed me.
Even years after her diagnosis, I desperately wanted to deny the power of the disease.
I never stopped longing for her to be the way she once had been.
I never stopped wanting her to be the person she could no longer be.
And that is my deepest sorrow.
The long and winding road that leads to your door
Will never disappear
I’ve seen that road before, it always leads me here
Leads me to your door …
…Many times I’ve been alone and many times I’ve cried
Anyway you’ll never know the many ways I’ve tried
And still they lead me back to the long and winding road
You left me standing here a long, long time ago
Don’t leave me waiting here, lead me to your door …
~Sir Paul McCartney
The Long and Winding Road that leads me to your door will never disappear Photo by Hallie Swift
