Courtesy of Marisa Cohen
“I was the smartest girl in the Bronx!” My mom was telling this to her neurologist as she sat in his examination room about six years ago, while I perched a few feet away on a folding chair. She might have been exaggerating just a bit, but Mom was always proud—and deservedly so!—that she graduated two years early from high school and earned a master’s degree in psychology by the time she was 21.
But at that moment, her her brain was failing her. She was in her late 70s, at a follow-up exam a few years after she had first been diagnosed with Alzheimer’s disease. She was unable to name the current U.S. president, and when asked what year it was, her guess was off not by a year or two, but by decades. As a final task in this checkup, the doctor asked my mom to write a sentence—any sentence she chose—on a notepad. I peeked over to see the results. There, in penmanship that was a little shaky but still recognizable from so many shopping lists and letters to me at camp, I saw these five words: I want to get better.
That was the moment that broke my heart.
Over the past decade, as my mom has slipped from the fog of mild cognitive decline to the near silence of full-blown Alzheimer’s disease, I often wonder, How much of the mom I used to know is still in there? And how much does she know about what’s happening to her? I felt as if that note was a little message in a bottle sent to me, my dad, and my brother, saying, I’m still here, I know what’s going on, and I wish it were different.
Facing my mom’s diagnosis
My mom was diagnosed with Alzheimer’s in 2012, just before she and my dad celebrated their 50th anniversary. There had been clues that something was going on. Mom had been a travel agent for decades and loved nothing more than exploring Europe, China, and U.S. national parks. But my dad confided to me that she had gotten lost driving to the hair salon a few miles away. She started having outsize meltdowns for illogical reasons (she got fixated on the idea 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 earlier and was so inconsolable that we canceled our trip). She’d ask the same questions over and over in a single phone call, which irritated me to no end.
I often wonder, ‘How much of the mom I used to know is still in there?’
For a few years after the initial diagnosis, my parents were able to keep things going, remaining in the suburban house I grew up in. But the situation got worse when Mom fell off a chair and injured her tailbone. She recovered after a six-week stay in rehab, but as is often the case for those with Alzheimer’s, the physical trauma accelerated her cognitive decline. Though we had installed a stair lift and hired an aide to help out five days a week, Mom was getting increasingly frail and forgetful, and I worried that she would get up in the middle of the night, forget how to use the lift, and fall down the stairs.
My dad helped out as much as he could, but he has vision loss due to macular degeneration, so every knob on the stove, every hot water faucet, and every container of food past its expiration date seemed like a ticking time bomb to me. My brother and I were faced with a difficult decision: keep them in the home they loved or move them to an assisted living facility where we could be sure they were safe?
Making decisions for my mother
In addition to being well-read and smart, Mom had always been the alpha in our family—she was outspoken, opinionated, and fiercely protective (some would say overprotective) of my brother and me. But Alzheimer’s picks up the entire family, shakes the pieces around, and rearranges the dynamics.
My brother and I found ourselves in charge, trying to guess what she would want—and weighing that against what was safest—and then making the decisions and explaining them to my mom in simple language she would forget as soon as she heard it (my dad, who had always been more laid-back, told us he trusted us to do what was best).
The author’s mother, Gloria, with Marisa as a kid. (Courtesy of Marisa Cohen)
When we first toured the assisted living facility, I kept asking Mom what she thought of the fancy dining room; the more casual Bistro, with its juice machine; the schedule of daily activities; the apartment with safety rails and call buttons everywhere. She claimed she liked it and said she wanted to move in.
But a month later, after we unpacked my parents’ bags, Mom asked when we were going home. When I explained that they were staying—at least for a few months, to give it a try—she was outraged, saying she would never agree to such a thing. I sighed, stuck in the heartbreaking position so many family members of people with dementia find themselves in, making the best choice under difficult circumstances but never being able to explain it adequately to the person it affects the most.
My parents’ new love story
Now, three years later, my mom has stopped asking to go home. She has stopped asking much of anything at all. During the pandemic, of course, my parents’ facility was in complete lockdown, which meant I could communicate with them only over the phone. Usually this meant an aide would hold the phone to Mom’s ear while I tried to connect with the mother who was still somewhere in there, sharing news about her grandchildren and telling her about the election of the first female vice president, which I knew would have thrilled her. Sometimes I would get a few words back in response, but mostly I’d hear silence.
Flickers of her old personality do appear now and then. She perks up when my dad asks Alexa to play music by Judy Garland or Tony Bennett (research actually shows that an appreciation for music can stick around through the later stages of dementia). Soon after my parents moved into the facility, I heard Mom laughing uproariously from the other room; an aide had switched the TV to an Amy Schumer comedy special. But it gets harder each day to recognize the mom who knew every answer in Jeopardy, who loved off-Broadway theater, who tried to convince me that “computers” would be a more stable career choice than journalism but then saved every article I wrote.
Gloria celebrating her 80th birthday with her beloved husband and daughter (the author). (Courtesy of Marisa Cohen)
In the end, there is one person who has never lost sight of the real Mom, and that is my dad. A neuropsychologist friend of mine once told me that one of two things usually happens when one partner suffers from Alzheimer’s: It causes anger and resentment in the caregiving spouse, or it brings the couple even closer together. My parents—who never held hands or kissed in front of me when I was growing up—have become like newlyweds again. Dad never walks by my mom without patting her hand or kissing her on the top of her head. They sit, day after day, hour after hour, on the couch in their room, holding hands.
He still sees the smartest girl in the Bronx in there, and though it gets harder and harder, sometimes, I can see her too.
Marisa Cohen is an editor in the Hearst Lifestyle Group’s Health Newsroom, who has covered health, nutrition, parenting and culture for dozens of magazines and websites over the past two decades.