24th Annual Mayoral Conference on Alzheimer's Disease
Brooklyn Marriott - Brooklyn, NY
Oct. 31st 2008

Many thanks to a Totally Kate contributor for transcribing Kate's speech
Hello ladies and gentlemen, how are you? What an extraordinary privilege and honor to be in such exceptional and august company. Please go on, eat your dessert – I know that’s the priority. But I’m going to tell you a little story while you are having your dessert, if you don’t mind.

I’m at a stage in my life where, finally, I can accept that almost all experience is bittersweet, and I can accept too the inevitability of death. I think I will neither fear it nor welcome it, as long as I can face it squarely and with some dignity. After all, we have no say over our entrance into this world. The least we can ask as human beings is to go clear-eyed and honest into that good night.

My mother’s name was Joan, but everyone called her Jiki. The bookends of my mother’s life reveal the full irony of her story. Her own mother died in childbirth, stamping my mother, before she could even speak, with a wild hunger, and a deep and a solitary grief.

These currents ran through my mother all her life, and though they shaped her, they did not define her. She learned the gifts of passion and friendship early on, and when she stumbled upon my father, she recognized a kindred spirit. And so they ran off together and had eight children, in quick and alarming succession.

I was her second-born, her first girl, and as she would later say – to the surprise and occasional horror of anyone who would listen – “Kitten was my first daughter, so of course she was my favorite. She was the mother I never had.”

She buried two of her eight children when they were very young – Maggie, as a baby, and Tessie, of a brain tumor, when she was 14. This last was a mortal blow and nearly cost my mother her marriage and her sanity. She rallied, however, and with Baruch Spinoza as her mentor and art as her creative furnace, she became a celebrated painter, a maverick personality, a remarkable example of grit and depth, wit and daring. We all loved her quite madly.

For her 70th birthday, I took my mother on a cruise up the Aegean Sea. One night, looking at the Turkish moon and drinking Irish whiskey, she wanted to talk about sadness. She told me that the greatest sorrow of her life was that she had never stopped searching for her mother, and whereas she knew this was emotionally irrational, she could manage it as long as she was intellectually sound.

“My brain gives me all my happiness,” she said. “I can read, paint, play the piano, laugh at your father, I can think, and I can love. Want to know how special the brain is?” she asked, pointing to the sky. “I can see the moon, but the moon can’t see me.”

A month later, my mother was diagnosed with Alzheimer’s disease. She begged me to help her find a way out of the nightmare, but of course, I didn’t. I couldn’t. You understand.

Instead, I just watched. I watched as my father, furious with denial, slowly disintegrated, until one day he crawled into his bed and died there two weeks later. Cancer, they said. Cancer everywhere – in his lungs, in his chest, on his brain stem.

I watched as my siblings, once so gfunny and charming and irreverent, grew confused and suspicious. And unable to sever the bond they had always known with their mother, severed it with one another instead.

I watched my mother’s caregiver, Lucy, as she navigated the uncharted currents of this disease. In fascination, I watched as she led my mother from her pride of place at the table to her permanent place in bed. From her perfumed bubble bath, to her soiled Depends. From her humming and winking, to her mute horror. From cognizance to dementia. They held hands as my mother went from somewhere to nowhere.

As my mother disappeared, I marveled as Lucy’s attentiveness grew. With every step my mother took into her private hell, Lucy responded in kind with a gladness and a grace, a lightness of touch and a sweetness of laughter. And it was evident to all who could see, that as my mother lost her capacity to love, Lucy’s love for my mother deepened until it was burnished with sacrifice and service, and a humility borne out of something profoundly shared.

One day, eight years after her diagnosis, my mother simply refused the spoon. And shortly afterward, she refused the water. But even then she held on, as one by one, all of her children embraced her and bade her goodbye. 

I was the last to kneel by her side, and looking into her eyes, I gave her the morphine tonic that would gentle her into oblivion. Her eyes were wide open. Then suddenly, Lucy was by my side, and she was whispering something to my mother, and so delicately closing her eyes, and smoothing my mother’s brow. And I can’t be sure, I’ll never be entirely sure, but I think I heard her say, “Thank you sweetie, for giving me the best time of my life.”

You cannot know, those of you who give care, what those of us who watch you understand. There are few gifts as precious as yours, and in your constant service, there is something far better than recognition. There is absolute humanity.

You have my stampeding admiration, and on behalf of my mother and all victims of Alzheimer’s, and in tribute to my darling Lucy, I congratulate you and give you my undying gratitude. Thank you very much.

National Alzheimer's Association
Fisher Center for Alzheimer's Research Foundation
More Alzheimer's Links