“I was the Bronx’s smartest female,” About six years ago, my mother was telling her neurologist this as she was seated in his examination room, and I was perched on a folding chair a few feet away. Mom was always proud—and rightfully so!—that she completed her master’s degree in psychology at the age of 21 and graduated from high school two years early. She might have been exaggerating a little, but Mom was always proud of her accomplishments.
But at that point, she was having trouble thinking. At a checkup a few years after receiving her initial Alzheimer disease diagnosis, she was in her late 70s. She was unable to identify the current president of the United States, and when asked what year it was, her estimation was decades wrong. The doctor requested my mum to write a sentence—any sentence she wanted—on a piece of paper as the last chore for this visit. I glanced over to check out the outcomes. I saw these five words there, written in penmanship that was a touch wobbly but nonetheless identifiable from so many grocery lists and letters to me at camp.
Do you have a loved one who has been diagnosed with Alzheimer or dementia?
I frequently contemplate this. And how much of what is happening to her is she even aware of? I had the impression that the note was a tiny message in a bottle meant for my dad, my brother, and myself, letting us know that it was still me, I knew what was happening, and I wished it were otherwise.
Facing my mom’s diagnosis
2012 saw my mother receive her Alzheimer disease diagnosis, just in time for their golden wedding anniversary. There were indicators that something was wrong. Mom had worked as a travel agent for many years and had a passion for visiting national parks in the United States, China, and Europe. But my father revealed to me that she had become disoriented while making her way to a nearby hair salon. We had to cancel our trip to Texas because she started having irrational, outsized meltdowns (she became focused on the thought that my kids wouldn’t enjoy her anniversary celebration at a family resort in New York if we went on a long-planned trip to Texas a few weeks sooner). In a single phone call, she would repeatedly ask the same questions, which irked me much.
How much of the mother I knew growing up is still there?
My parents were able to continue living in the suburban home I grew up in for a few years following the initial diagnosis. Mom hurt her tailbone after falling off a chair, which made the issue worse. After a six-week stay in rehab, she was able to get better, but as is frequently the case with Alzheimer patients, the physical trauma sped up her cognitive deterioration. Mom was getting more feeble and forgetful, and even though we had a stair lift installed and hired an assistant to assist five days a week, I worried that she would wake up in the middle of the night, forget how to use the lift, and fall down the stairs.
In spite of his limited vision caused by macular degeneration, my father tried to help out as much as he could. To me, every stove knob, hot water faucet, and food item that had passed its expiration date looked to be a ticking time bomb. The choice for my brother and I was whether to keep them in the house they cherished or transfer them to an assisted care facility where we could be sure they were secure.
Making decisions for my mother
My brother and I suddenly found ourselves in charge, attempting to predict what she would want while weighing that against what was safest. We then made the decisions and informed my mother of them in plain language that she would quickly forget.
I kept asking Mom during our initial tour of the assisted living facility what she thought of the opulent dining room, the more relaxed Bistro with its juice machine, the daily schedule of activities, and the apartment with safety rails and call buttons all over. She claimed to like it and to desire to settle there.
But a month later, after we had unpacked my parents’ belongings, Mom inquired as to our intended return date. She was furious and insisted that she would never agree to their staying—at least for a few months to give it a try—when I explained that they were. I sighed as I realized how heartbreaking it was for so many family members of dementia sufferers to be forced to choose the best course of action in trying situations but never be able to fully explain it to the person it will most likely affect.
New love between my parents.
Three years later, my mother no longer requests to go home. She no longer makes many requests at all. Naturally, during the pandemic, my parents’ facility was in total lockdown, so the only way I could contact them was by phone. Typically, an assistant would hold the phone to Mom’s ear as I attempted to speak with the mother, who was still present, to update her on her grandchildren and to inform her of the election of the first female vice president, which I knew would have delighted her. I occasionally received a few words in return, but the majority of the time there was silence.
There are occasional flashes of her former self. She smiles when my dad asks Alexa to play music by Tony Bennett or Judy Garland (research actually demonstrates that musical appreciation can endure into the later stages of dementia). My mother started laughing hysterically from the other room shortly after my parents moved into the facility; an aide had changed the TV to an Amy Schumer comedy special. The mother who loved off-Broadway theater, knew every answer to Jeopardy, tried to convince me that “computers” would be a more secure career than journalism, and then saved every article I ever wrote is becoming harder to recognize every day.
In the end, my dad is the only one who has never lost sight of my mom as she truly is. One of my neuropsychologist friends once told me that when one partner has Alzheimer disease, one of two things typically happens: Either the caring spouse becomes enraged and resentful, or the couple becomes even more in love. When I was a child, my parents would never hold hands or share a kiss in front of me; now, they act like newlyweds. Dad never passes my mother without giving her a handshake or a kiss on the top of the head. They sit on the couch in their room holding hands, day after day, hour after hour.
Even though it’s getting harder and harder, he still sees the Bronx’s smartest girl there. Occasionally, I can too.