First, dementia stole my mother’s smile

Amy Koss writes often for the Opinion section of the Los Angeles Times.  Her Op-Ed piece in Sunday’s paper (Oct 14) captures so beautifully her experience and the changing relationship she has with her mother living with Parkinson’s dementia.

Reprinted from the OP-ED section of the Los Angeles Times, Sunday, October 14, 2018

There are millions of people living with all kinds of dementia. Millions. I assume each case is as different as the sufferer. I know my mom’s version, but only as a deeply biased observer. She and I have now spent five years negotiating the deterioration of her mind, and yet the conversation we began before my birth continues.

My mom and I were never shoppers. We didn’t bowl or work out or cook together. Our thing was always talking, on the phone or on the couch, sharing an afghan. We talked when I was growing up; we talked after I left home and when I went back to visit.

She was never coy with me, she didn’t shy away from any topic, but once the dementia began, she wouldn’t or couldn’t explain what her descent was like from the inside. No matter how I would ask, nag, beg, the only thing she put into words was, “It’s like there’s a stranger asleep in my bones.”

You could call our lifelong conversation gossip, but I always thought we were engaged in serialized nonfiction, never-ending stories about the people in our lives. With spinoffs. I knew most of the characters in her stories. She kept my characters straight with a few prompts. Clara’s the one whose Mom lives with her. Debby is the mohel who had us all over one Passover.

Over time, her characters died or simply drifted away. But it isn’t death or drift that has threatened to stop our dialogue. Parkinson’s dementia did that.

First, it replaced her animated face with what the Parkinson’s crowd calls “poverty of expression.” That poverty has included the end of hand gestures, nods, shrugs.

Meanwhile, the disease devoured her short-term memory, making storytelling stressful. She not only forgot where she was in a sentence, as we all do, she got lost while forming the intention to speak.

To complicate things further, time seemed to lose forward momentum. She began surfacing in the past, accompanied by the dead. It’s 1939, she’s at Central High in Detroit with her girlfriends, when her elderly daughter suddenly breaks into the conversation.  Momba? Do you want ice cream?”

Even in the moments when my mom was clearly with me in the here and now, she was unable to picture my distant life or keep track of whether my kids were little or away at college. She repeated questions but couldn’t retain the answers.

As her attention span shortened, so did our talks. Once she’d established that everyone was safe, healthy, present or accounted for, she required no further details. It seemed I woke her no matter when I called.

Then, although her vocabulary was still rich, the elegantly enunciated words stopped working together. If I were adept at languages I might have been able to crack the code. I recorded some of our conversations to try, but the syntax changed too quickly for me to learn it. We were talking, but I didn’t know what about.

Next, the words went the way of her smile. They melted into sounds. Sometimes I could

tell she knew my voice by the relief I heard in hers. And even with garbled lyrics, I still had the melody. Tone, tempo, inflections and pauses. The range of her voice is my mother tongue.

My mother has always been a worrier. Our conversations, such as they were, still opened with some rendition of “Thank God you’re alive!” My job, as always, was to convince her that no worry was required. I tried to convey what would calm her, ease away any urgency. Of course, with no short-term memory, she couldn’t stay reassured.

Then the music stopped, and she went silent. But our conversation continues.

I still chatter into the phone or at her bedside, listing her nearest and dearest in an attempt to check us off her worry list, in case she still has one. I tell her she’s brave. If I let the silence stretch long enough she occasionally makes a grunt that’s part throat clearing, part gasp.

I can’t bear to imagine how terrifying her situation may be to be her. I’ve no idea if my voice and words reach her. I don’t know if she longs for death, hopes to be cured, or neither. Last time I saw her, she rarely woke up.

I miss those earlier conversations, of course, the ones with story, music, delivery. I miss them down to my bones. But I also miss her abstract babble of just a few months ago. Now I know these barely audible breaths are her last contributions to our dialogue. And the silences between are nothing compared to the silence to come.

Amy Koss writes often for Opinion.



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