Essay: Welcome to the Memory Café

I’d never felt as alone and scared as when I was caring for my father with Alzheimer's and my infant daughter.

I was so tired. I had cleaned up the remains of dinner (spilled meatloaf—that would be my dad’s; thrown meatloaf and peas—that would be my baby girl’s).  It was the winter of 2003 and life had tasked me with the caregiving of two generations…alone. It was cold, exhausting, and lonely, and frankly, quite scary at times. My husband had left me with a not-yet-1-year-old and my father, who had just been diagnosed with Alzheimer’s disease. When I wasn’t changing diapers (for both of them), I was wondering what our fate would be if the power went out.

And so, I took a leap. I had no other choice. It was one of those “leap or fall” moments, the kind when you see a precipice and think, I’d better do something or I’m going down there. To be accurate, the leap was more of a click. It was the early days of the internet, before the arrival of online everything. Back then, people were just beginning to convene in virtual spaces known as chat rooms, tentatively, nervously. One night, at 3 a.m., in the grips of brutal insomnia, I noticed a chat room called Memory Café, populated by people with handles like aloneandfreaked and justmommaandme.    

“Hi,” I wrote.

“Greetings, Elicoh,” came a flurry of digital responses.

“We are just here talking about shit. Literally,” wrote one participant.

“What are you up to?” wrote another.

“I am just here…feeling scared….” I wrote. And then I started to cry.  I realized that I had found a community, and nobody needs a community more than the Alzheimer’s caregiver.  I had somehow stumbled into a world populated by my own kind, a late night internet “café” for the exhausted and heartbroken. Aloneandfreaked was caring for her father with dementia. Justmeandmomma was caring for her mom. In fact, everyone there was caring for someone who was in the throes of forgetting.

In the Memory Café, I met people who were still reading and thinking, people who were still alive at a time when I felt I was dying.

Over the next months, I discovered that I was not the only person on earth caring for two generations by myself. Apparently, there were hordes of us. The group and I shared tips about what to do about stoves (take the knobs off) and doors (lock them with a key). We exchanged advice on how to find a wandering parent and when a baby’s fever is serious. And in the mornings, even after almost no sleep, I felt better. Somehow, talking with dadthinksIammom and helpmegod about our shared experiences fending off sexual advances from a parent with dementia gave me ballast when I had to get up in the morning and start all over again.

Then, one night, in the pre-dawn hours, someone new turned up. Her handle was readinginreading. She was caring for two parents with dementia in Reading, Pennsylvania.

“At night, I disappear into Alice,” she wrote.

“Alice?”

“Alice Munro.”

She had just finished reading The Moons of Jupiter, and waxed on about how the beauty of the stories allowed her to escape from her circumstances. I went out and got that book the next day. Turns out that Alice Munro’s stories are perfect for the overburdened caregiver, little gems that whisk you out of your own world and all its trappings. Alice and I have been together ever since.

On another occasion, reading told me she buoyed herself with history. “You can blame Hesiod for the way we see the elderly,” she typed.

“Excuse me?” I wrote back.

“Eighth century B.C., in Works and Days,” she clarified. “He describes aging as ‘sorrowful old age’ and goes on and on about how dark and even sinister aging is!” The Chinese, she went on to explain, revere the elderly and see in their plight a sort of luminous state.

I quickly grew to love our nightly sojourns, which were not simply the camaraderie of the exhausted but also a meeting of minds. Reading and I were talking…about ideas! About books! After becoming a caregiver, for the longest time, I had totally given up reading. Instead, I would veg out on bad TV every night, which numbed the loneliness and pain like a drug that salved the immediate discomfort but ultimately left me feeling vaguely hung over. I, who had lived to read, had become too exhausted to read. It seemed as if caregiving had used up that part of my brain. But my friend reading gave it back to me.

In the Memory Café, I met people like her who were still reading and thinking, people who were still alive at a time when I felt I was dying.

Then, one night, I entered the chat room to find everyone was in mourning. “It’s so sad, Elicoh,” someone wrote. “It’s readinginreading.”

“What happened?”

 Someone in the chat room who knew her in the outside world said she’d had a heart attack.

“WHAT?” I screamed.

“She’s gone,” someone typed.

It was like a hole had opened up in the darkness, and the hole was inside the white-blue light of my computer screen.

“It happens a lot,” someone else wrote. “The caregiver often dies first, you know, statistically speaking.”

I flipped off my computer and sat in the dark for a long time, thinking about readinginreading and remembering all the conversations and books we had shared, including Saint Augustine, Jean Rhys and what readinginreading called “My Mahfouz,” referring to the Egyptian author Naguib Mahfouz, who wrote The Cairo Trilogy, books that had literally saved me that spring. The novels had so much intrigue and plot, vast casts of characters and the most lucid and engaging writing. Reading them was like swimming in a warm pool of water inhabited by mermaids and magical beings. Total escape. My friend reading and I had been talking for months about books like The Cairo Trilogy, and also about caregiving, dementia, and life, but I had never even learned her real name.

“Godspeed, my friend,” I whispered into the dark. Down the hall I could hear my father rumbling around in his room in the wee hours, awake as I was, opening drawers, “looking for clues,” as he put it. I could hear the drawers rattling, things clunking onto the ground.

As he fell further into the grip of dementia, he responded like a detective, seeking answers: Where was he? Why was he in this house? And above all, Who was this baby?—my daughter. Was it his? He was terrified that he had fathered a child unintentionally. His reaction was to ask endless streams of questions, like:  “Who pays the hotel bill here?” and “Where is my mother?” Or, to me the most heartbreaking question from a man who’d been a soldier in the Pacific theater: “Is this where the Japanese are holding us?”

And then the baby cried. She probably needed a diaper change. The sun would soon be rising. Another day of caregiving was about to begin.

Elizabeth Cohen is from the Village of Los Ranchos, in New Mexico. She is a professor of English, a mother of a college freshman art student, and, most recently, the proud trainer of a puppy named Layla. Her memoir, The Family on Beartown Road (Random House, 2003) is the story of the two years she spent caring for her baby daughter and her father as he succumbed to Alzheimer’s disease.

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