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.

 

Follow Fawn Germer on Twitter: www.twitter.com/FawnGermer

Comments

[Limbicdoc]

01:19 AM on 05/26/2010

My mother dies 23 years ago from Alzheimer's. This was long before it was a household word. As the youngest child I was her primary caregiver at age 17 for my last two years of high school. I voraciously wrote about it a year after she died, I was in my third year of medical school by then. The manuscript sat dormant as life went on after that. The problem was there was no ending, long after a victim leaves the earth, things are never the same. In recent years I was finally able to complete it, when I realized how universally connected we are by this diabolical disease, this great equalizer, that connects us all as humans. Years of work have shown me how far we have not come with the lack of honor and respect we pay to our elderly and our AD victims. We are all innately connected by this most dehumanizing disease. Thanks for your courageous sharing and post.
Joseph J. Sivak MD
http://alzheimmers.blogspot.com

[lucylou]

11:33 AM on 05/19/2010

Thank you for that poignant portrayal. Yes, I've seen that slump, those vacant eyes, the non-ability to even recall how to swallow. Incredibly, when I brought my cute little dog into the room, my great-aunt would still light up and sometimes try to reach out a hand to call him over. Remarkable.
Your mother probably does hear you at times even though it would seem a very very remote possibility.
For my aunt, it was fortunately not a long goodbye (about 4 yrs), but first came the altzheimers & then the stroke - an act of mercy for an otherwise healthy woman that seemingly could have suffered that 'indignity' forever.

[LisaJane]

07:14 PM on 04/15/2010

Fawny that was beautiful. I am so sorry she is suffering, as you are.