06/12/2010 05:12 am ET Updated Nov 17, 2011

Why They Call Alzheimer's 'The Long Goodbye'

"There's your mother, Fawn," my best friend said as she pointed to a woman crumpled over in a wheelchair near the nurse's station.

"No, that's not my mother," I said.

"Yes, it is."

I walked over to the woman, certain it was not my mom. Her head and shoulders were completely slumped over, and she was unresponsive. Her hair was whiter than my mother's hair has ever been, her mouth was completely slack and puffed out in a way I'd never seen. I bent down close to her face, still sure it was not my mother.

But, it was my mother. I couldn't recognize her even though I'd seen her a few days earlier at the nursing home, when she was in her bed and in the context I've come to recognize and accept.

Alzheimer's Disease is a cruel insult to anyone who suffers its indignity. This is the last, lingering chapter in a story that began with a paralyzing stroke 19 years ago. Mom fought back and faced every obstacle, but things greatly worsened with the appearance of Alzheimer's Disease in 2001. My mother is now almost lifeless, yet unable to die with the dignity and peace that she deserves. I have always said that acceptance is a mandatory coping tool with this insanity, and acceptance helped me face her decline without regretting what we were losing along the way. I treasured every connection we had, because even when she couldn't speak, I could feel her love. I do believe she wanted to keep living.

But, there is no acceptance at this point. My mother is suffering. I know this. Even though she is comfortable, I know she is suffering.

I know she doesn't want this. How could she? She had a living will, but her will to live has kept her going through this crucible without extraordinary means. When the Alzheimer's robbed her of her ability to swallow, she was given a stomach tube for feeding. She said she wanted it. Now, that tube is keeping her alive, even though there is almost nothing going on in her brain.

After her nurses put her back to bed yesterday, I brushed my fingers against her cheek and told her how much I love her. I sang her the Jewish hymn, Ein Keloheinu. It was her favorite hymn, and the song was one of the last things she remembered how to communicate. She looked at me. The right corner of her mouth became a smile. I love her so much.

I wonder what it is like for her, trapped in so much nothingness. Does she feel the slowness of time passing? What is she thinking? Is she thinking anything? Is she fighting to stay alive, or is she too lost to let go? I am so confused. I hurt for her.

I have some videos that were shot of her before the stroke. I did not watch them -- not once -- after the stroke changed her voice, appearance and mobility. But, I did watch them a couple of weeks ago. There was my vibrant, strong, funny, loving, warm, precious mother, and she was talking to me, singing to me, smiling at me, laughing with me... Oh, if I could have just one more minute with her, I would tell her how proud I am of her.

And I'd know she'd hear me.