It's an image I will never forget: my mom holding a stranger in her arms. I was 9, and couldn't see what had happened from the backseat of our car, but somehow I learned right away that the driver in front of us had struck a boy. Mom and Dad had seen him fly into the air over the hood of her car and fall out of sight.
They jumped into action as a team.
Dad ran to the boy on the ground. Miraculously, he wasn't seriously hurt. Most clearly, I remember what Mom did. She went straight to the woman who had been behind the wheel.
"He ran right in front of me!" she wailed over and over. She collapsed onto the street. My mother scooped her up, rocked her, and cried with her.
"I know, yes, I know," Mom sobbed.
My mother, Linda, has always had a way of relating to people, even total strangers, without pretense, on a deep, empathetic level. It's one of the things I have loved most about her. We never saw the driver of that car again. But I imagine that Mom's support helped her get through one of the worst experiences of her life.
Nine years ago, it was my mother's turn for a horrifying, life-changing moment. She was diagnosed with primary progressive aphasia (PPA) at age 61. It's a degenerative brain disease, a form of dementia with no treatment or cure. Since then, I've watched a passionately joyful woman, a devoted mother, an engaged listener and friend deteriorate and transform into someone almost unrecognizable. It's been agonizing to slowly lose her.
A year before, my mom confessed she was having trouble signing her name. She'd recently started a job fund-raising for the Michael J. Fox Foundation for Parkinson's Research, and her ability to connect passionately with people was paying off. She was soon raising millions, and was an adored mentor for junior employees.
But she was struggling to find words in everyday conversations, especially in groups. Her normally flowing handwriting morphed into choppy, childlike block letters. She had trouble organizing meetings she was expected to run. She couldn't understand jokes, and often asked my dad to tell her what was funny. Without our knowledge, but with my father's help, she began a series of medical tests to try to figure out what was wrong.
We heard the verdict at my home in Nashville over Christmas in 2005. My husband, my brother and sister, and my in-laws sat on one bed as my parents explained that Mom had five to seven years until she would need full-time care. We listened, shocked, and struggled to understand. It was hard for Mom; she'd made my father keep the news from us for a few months. She was determined to continue working as long as she could, and didn't want pity. We were sworn to secrecy.
And so began an excruciating period where we had to act as if nothing was wrong. We started covering for my mom's condition everywhere we went with her--even Starbucks, where, at the head of the line, Mom said, "Let's get nachos!" We faked laughter at her "joke."
We coached her at crucial moments when no one was watching. One day, my sister, Ashley, visited her at work and found her hunched over a phone book. "Oh, good, you're here," Mom whispered. "How do you spell Chicago?"
Almost every time we had dinner together, a glass broke or a plate of food wound up on the floor. She ate spaghetti with her fingers. She had accidents and falls that landed her in the ER. In conversations, we worked subtly to help Mom find words or finish sentences, trying to shield her from her own struggle. It was scary, and exhausting.
One summer day, an old high school friend of mine saw her walking on a road close to home and offered her a ride. Mom couldn't tell her where she needed to go, and seemed lost and confused. That marked the end of the charade. We couldn't keep her secret anymore. It was a relief, in some ways, to allow the truth to emerge. The Fox Foundation graciously kept her on for many months, but it was time for her to retire far sooner than any of us had imagined.
My first child, Huck, was born in 2007, the same year my mother stopped working. She had always wanted to be a grandma, and sometimes she surprised us. One afternoon when Mom and Dad were babysitting for me, I called to check in. Mom tried to tell me how it was going.
"He's. He's. He's being--" she stuttered. There was a long pause. I thought she wasn't going to be able to say more. "Cantankerous," she blurted, the longest word she had mustered in months.
In his early years, Huck was often cantankerous. But he and "Nana" spoke a language the rest of us couldn't understand and didn't quite have the patience for. She couldn't change his diapers, but when they sat on the floor with a spinning top or a jack-in-the-box, my mother's heart and silliness shone, and their energies matched. When my second son, Jasper, was born, Mom had trouble saying his name. She and Huck made a game of it.
Huck: Say Jasper, Nana.
[Hilarious, fall-down laughter]
In some ways, she was delightful. There was plenty of the emotional connection I had known all my life, without the concern for manners and appropriate behavior. She was less judgmental of others, and often playful.
But just as often, she was depressed and angry. She couldn't hold Jasper by herself when he was a baby, because once, in a moment of confusion, she almost dropped him. I was struggling to protect both my children's safety and my mother's pride. After awhile, the "Spasper game" with Huck was more humiliating than fun. We had to explain to him why he couldn't play it with Nana anymore. He adapted.
Finally, as the doctors had predicted, caring for my mother became too taxing for my father. She was unable to dress or bathe herself. She often wandered away from the house in fits of rage. My dad followed and coaxed her home. She became physically aggressive and abusive, sometimes biting or throwing things. When we saw each other, visits revolved around preventing some kind of physical or emotional injury. Once, right in front of both boys, she screamed obscenities and dropped a glass that smashed right by their bare feet.
We tried hiring aides. She hated almost all of them. Many of them burned out and quit. My mother wanted only my dad's help, and simultaneously craved independence from him.
One early morning, my father thought he was having a heart attack. While he sat in the foyer awaiting the paramedics, he worried more about my mother's well-being than his own, as she ran upstairs and down multiple times in her underwear, trying to figure out how to help. Tests later showed he hadn't had a heart attack. It was stress, we realized, verging on panic. The family became convinced that, for everyone's safety, Mom needed long-term care.
The move was the hardest change my tight-knit family has ever had to endure. The residence we found for her is full of kind, skilled people, and within a short time my mother seemed settled there, and unaware she was in a new place. But our visits were agonizing for me. I couldn't look at her without seeing a fading picture of who she used to be. I resented this mostly manic, dangerous, crazy woman who had taken over my mother's body. I hated her insidious disease. I couldn't help but speak of Mom in the past tense. She just wasn't there anymore, not in the way I wanted her to be. I searched my mother's familiar face, but I barely saw a glimpse of her. I usually broke down after I got home, sobbing so uncontrollably that I was sore the next day.
Then, unexpectedly, I discovered a kind of healing. At a party, I found myself talking with two women whose parents suffered from dementia. One of them told me she'd moved to Nashville to take care of her mother in the last year of her life. She said she had found surprising serenity and healing in an emotional, spiritual relationship with her mom that was different from any they'd experienced before. The second woman was a good friend who told me about a phone call from her dad right before he died of Alzheimer's. For a moment, he showed a remarkable lucidity, and for the first time in her life he told her he loved her, over and over again. Listening to their stories, I started to weep. I needed to love my mother in a different way. The innocent way Huck did. The empathetic way my mother had always loved others, sometimes total strangers.
With a renewed heart, I flew to see her the next day. She was sitting, head bowed, in the living room of the residence. A guitar player strummed and sang for a small audience of patients. One woman across the room occasionally shouted at no one. A man in a wheelchair angrily said, "Come ON!" Another woman sat upright, singing along beautifully, knowing all the words of "You Are My Sunshine." Mom slept.
I shook her gently.
"It's me," I said. "It's Kim." I brought my head down underneath hers, trying to get her attention. It took a few moments. But when she saw me, her eyes opened wide. Her mouth lifted into a wide, happy grin, as though I was one of the greatest surprises of her life. We sat like that for a while, smiling at each other and humming a bit to the music. I rubbed skin cream on her dry hands. I focused on this new person in front of me, in many ways a stranger. She radiated a peace that comes from having little self-awareness.
Sometimes she seemed sad and cried out, wordlessly, for no apparent reason. My dad had told me how to copy her with my voice, at the same volume and pitch, as a way of communicating. I tried that and we locked eyes when she heard me. Then I brought my cry down to a quieter, calmer tone. Her voice followed me there. With almost all language gone, she and I discovered a new way to say, "I get you. You understand me. We love each other."
She is, in many ways, a "new" mom. But now it's easier to welcome memories of her as she used to be. I see her in the expression Jasper makes when he sings at the top of his lungs, eyes and mouth open wide, head tilted back and shaking slightly. I remember her as I run, the way she always used to, into a cold ocean when no one else wants to. I'm sure I know how she felt as I listen to my own children with all my heart.
In the living room of my mom's new home, I wrapped my arms around this changed woman. Then I got up to get her some juice and a straw. When I came back to her, she had forgotten me. But joy spread on her face as she discovered me for the first time all over again. We both cheered.
"Want to go for a walk?" I asked. She sucked in her breath in wonder. Her eyes opened wide and bright.
"Yes!" she said.
" With almost all language gone, she and I discovered a new way to say, 'I get you. You understand me. We love each other.'"
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