Courage

Kenneth was recently moved to another unit, so I took my mom to visit him.

“Do you miss me? Do you know me? Are you okay? Do you like it here? Do they take you outside? Is the food good here? Do you still love me?”

She fired off one question after another, and he didn’t respond. He couldn’t seem to get the words out, and plus, he was refusing to look at her. He flashed me an angry, almost indignant, look when we walked in. Then, trapped in his wheelchair and unable to move, he looked away.

Maybe he had felt abandoned when he hadn’t seen my mom for five days. But I have no idea what was going on in his brain.

Waiting for answers that were never going to come, my mom started to cry.

He is getting worse. I’ve been noticing this for a long time now. In their early days together, he was charming and dapper. He held my mom’s hand as he walked her up and down the halls, talking continually.

Now he is what we mean when we say, “If I ever get that way, will you put me out of my misery?”

In May I read a story in the New York Times about a Cornell professor who planned to commit suicide after she learned she had Alzheimer’s. She didn’t want to be alive when she could no longer access the brilliant, witty, incisive mind that was central to her identity. She lived for five years after diagnosis, gradually losing her mind until she and her family chose a day for her to kill herself. Then she did it.

What a tremendously courageous act, I thought. Most people wouldn’t be able to go through with it.

But then I decided that no matter what you do, live with it or die (naturally or by your own hand), you’re always performing a courageous act with Alzheimer’s.

My mom would never kill herself to escape a future in which she would lose her identity. It’s not in her DNA to take that kind of control of her life, and it would conflict with her faith.

But how courageous is it for her to walk through each day, dropping pieces of herself on the linoleum floor never to find them again, and yet continue to go on?

She doesn’t know what’s happening, doesn’t know what she will be called to do from now until the day she dies. So maybe it’s not right to call her courageous.

Maybe, she’s just an unfortunate victim.

But I hate thinking of her that way. I prefer to tell myself that in a strange, maybe backward, kind of way, she is lucky.

Maybe life is large enough to encompass a radically shifting identity, or energetic enough to move forward when identity falls apart completely. Maybe life is bigger than who we think we are, the skills we nurture, the limits we set for ourselves, and even the relationships we cultivate.

Maybe in some way, in tiny increments, my mom gets to experience that largeness. And maybe there are moments of joy and wonder.

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About daughter3

My mom has Alzheimer's disease. She's 88 and lives in a nursing home. She has three daughters. I'm her youngest.
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8 Responses to Courage

  1. Nancy Shamban says:

    Beth, This is a very special posting and I love your writing. xx

  2. Adrienne Rosen says:

    Beth, reading your blog brought tears to my eyes. The tears were for Kenneth, your mom and the millions of people living with Alzheimer’s. It does take courage not only for the people living with this horrific disease but also for family members like yourself.

  3. Megan says:

    This is such a poignant post, Beth. I keep thinking that if the awfulness at the end of life serves any purpose, it may be to enable us to let go of life.

  4. laurajstein says:

    Thank you so much for your thoughtful and honest writing!

  5. curvyroads says:

    Beth, you have again written a beautiful, thoughtful, painful piece, which could be about my mom, in so many ways.

    I struggle with not knowing how someone with ALZ feels, what they know, what they dread about the progression of their disease, and despite the unknowns, feel so strongly that my mother would not want to continue to decline the way she is. Watching her, and the other residents, decline, only convinces me I would not want to live that way.

    But then, there are moments that she seems so happy, even if it is brief.

    Truly, you are the courageous one. For your mom. Hugs, Lynne

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