Watching someone you love slowly forget everything about their life is hard to witness. So as my grandmother’s memories continue to fade, it’s important for us keep the good memories of her alive.
As I sit in a nursing home on a rainy Sunday afternoon visiting my grandmother, I listen to the nurses read chapters from her book out loud to the residents. The book is a family memoir that my grandmother published nine years ago. It should be noted that we’re in the dementia wing, so most residents, including my grandmother, don’t understand what’s being read. But the nurses still read, and it seems to offer a sense of calm and normalcy.
My bubbie, Sissy Carpey, was a writer. During the years when I lived in New York City as a young professional, she would remind me of how, when she was younger, she would dream of running off to Manhattan to write full-time. A marriage to my grandfather and a baby by 21 brought to life a different dream: one of love and family.
I grew up around the corner from my grandmother, so she felt like a second mom. The love that she showed me and her six other grandchildren, as well as her three children, was immeasurable.
Although my grandmother started a family at a young age, she was determined to build a meaningful career. She was proud to be a working woman and spent time in public relations while writing on the side. She won several awards and published articles in The Washington Post. But she always wanted to write a book. It was the final professional goal she had.
Ever the optimist, she spent several years in her mid-70s completing a memoir about her family’s escape from Russia.
She worked hard on that story, pouring all of her energy into the writing. And because of that, she was different by the end of those years. A little more tired, a bit more forgetful. We called it aging.
During one of my visits around 2009, as she was putting the finishing touches on her memoir, I was sitting in her office, surrounded by dozens of printed pages and a mountain of sticky notes. She was not an organized woman, so I was used to the clutter. But on this day, her office felt like a tornado had ripped through it.
She was clearly tired, as I assume many writers and artists are after they finish a piece of work that took years to complete. As she was attempting to organize her space, she started talking about life and told me that her biggest fear was not losing her energy, but losing her mind. I told her that she was a sharp woman and had nothing to worry about.
Shortly after the book was finished, she was diagnosed with pancreatic cancer. Although typically a fatal diagnosis, she was able to receive immediate surgery and survived. But while her body recovered, her mind never did.
She gradually experienced increased memory loss and forgetfulness. I remember one moment when she couldn’t remember something and kept scolding herself, “Bad Sissy, bad Sissy.”
She would wake up in the middle of the night confused, looking for the “babies” in the cabinets of her kitchen. She started to sleepwalk and would fall back asleep on the floor of my grandparents’ office. She would repeat herself endlessly and struggle with name and face recognition, unsure of which grandchild I was. She knew that I was one of hers, but didn’t know which one. As things got worse and she needed more attention, she started receiving around the clock care at home and then transitioned to a nursing home.
Today, my grandmother is suffering from late-stage Alzheimer’s disease, which has slowly progressed over the past seven or so years. She doesn’t recognize her family or know who she is. She wears diapers and can hardly speak. Sometimes she’ll say things like “I’m scared,” but doesn’t follow it up with anything else.
There are some bright moments. If we sing a song that triggers something in the depths of her mind, her eyes light up a little. If we give her a hug, she seems to appreciate the affection. If we say the name “Al” (her husband) or “Norman” (her brother), she looks at us with slight awareness.
But the reality is that we’re strangers to her and she would be heartbroken if she understood her current state. As she said to me a handful of years ago, losing her mind was one of her biggest fears.
Back in the nursing home, after the aides finish reading an excerpt from her book, I push her wheelchair to the dining room to feed her dinner. I share updates on my life, hold her hand and then say goodbye. I lean in to give her a hug and she touches her forehead to mine.
Words, she doesn’t have. But the natural instinct to be affectionate, she does.
Watching someone you love slowly forget everything about their life is hard to witness. So as my grandmother’s memories continue to fade, it’s important for us keep the good memories of her alive. Remembering the unconditional love she showed her children and grandchildren. The “every day is a beach day” mantra she lived by. Her smile, warmth and ability to find the good in almost every situation.
This is what I will hold onto.
Editor’s note: Sissy Carpenter passed away on Nov. 6, surrounded by her family. She was 85. JN
Rachel Greenspan is a program manager with Techstars, a global startup accelerator program. She previously founded an online community called Quarterlette.com for millennial women. November is Alzheimer’s Awareness Month.