While working on my story on the fight against Alzheimer’s disease for Denison Magazine, which has been making its way to mailboxes across the country in the last week, I came to feel fortunate that my knowledge of dementia was based almost entirely on research. Confronting it in person looks like a highly frustrating experience, and it’s easy to surmise that the patient simply is losing his or her mind.
That sort of assessment would be met with sympathy by the people I spoke with for Denison Magazine’s story, “The Race to Slow It Down.” But that take on things is not their take. Such a thought is useless in the face of the giant battle researchers are waging. Alzheimer’s currently afflicts more than 5 million people in the U.S., and by 2050 the cost of caring for them is expected to exceed $1 trillion. It is the sixth most common killer in the United States, and its mortality rate has not been slowed. On a global scale, matters are even worse; as longevity increases in lesser-developed areas of the world, so too will dementia.
The one encounter I had myself has stuck with me for decades now. It was a mild brush against dementia, and yet it is among the oddest interactions of any kind I have had in my life.
It was summer of 1990, and I was in graduate school in Virginia. I was on a trip to see a friend in Philadelphia and planned also to stop in to visit my grandmother in her new apartment. Her story is not uncommon; my grandfather had grown too frail to live at home and had entered a nursing home. Finally, after many years, my grandmother, Mom-Mom Rose, had moved out as well. She had a small apartment, not quite assisted living, but with helpful amenities like communal meals and a cleaning service.
My father had warned me that she might seem different. She could be confused, he said. But on the afternoon my friend and I stopped by on our way to the ballpark, she embraced me as warmly as she had my entire life. She greeted my friend cordially. There was coffee.
We made small talk, and though she seemed slightly agitated, overall I could not understand what my father had been talking about. Her living space was a microcosm of the tidy home she had lived in for decades—the same slipcovered sofa, the same lounge chair.
But after she offered my friend a black cherry soda, she walked me to the other side of the living room. On top of a small chest of drawers was a large bottle of bathwater—Jean Naté, in a tall frosted glass cylinder with a black knob on top, about half full. She had kept a bottle on display somewhere for as long as I could remember.
“They’re taking it,” she said. When I asked her who, she explained that, slowly, the cleaning ladies who came once a week were siphoning off the fragrance, and replacing it with water. I removed the cap and sniffed inside: grandmother-smell, citrus and spice box, sweet as it had always been. I told her I thought it was fine.
“I’m on to them,” she said.
In the closet in her small bedroom she showed me a black lambswool coat, the sheen of its tight curls somewhat faded. With it on its hanger was a matching scarf, and, on the shelf above, a hat to complete the set. “My fur coat,” she said. “They took the scarf and replaced it. It looks just like it, but it doesn’t match.” I held them side by side, both of us looking at the same thing but seeing something different.
My buddy and I got on with our day. He asked me what I had been worried about. She had seemed to him like any grandmother, just a little old. Vague. Normal.
But me? I had found the visit suffused with oddity.
My grandmother may or may not have had Alzheimer’s, and however unsettling my encounter with her, philosophical questions about who exactly I was visiting don’t matter much. Expensive, dedicated, large-scale clinical trials matter. For now, those double-blind, impersonal efforts are the only visible path toward alleviating the pain for the stricken and the caregivers. It’s the kind of work being done by Jim Summers ’77, vice president of neuroscience discovery research at AbbVie Inc. in Chicago and by Rachel Andaloro ’06, a neuropsychologist living and working in Boston.
Dementia has an element of cruelty, taking over individuals while skillfully leaving in place a familiar veneer. In pleading with my father to move her close to him in Atlanta, or back again to Philadelphia, or back South again, my grandmother’s voice must have sounded to him like the voice of his mother telling him she needed something. And so he did everything he could.
One afternoon late in her life, when my father was visiting, for some reason she tried to explain her state of mind. She could remember her childhood, she said, and pleasures and friends from long ago, but for some reason, she said, she couldn’t remember tomorrow.
David Zivan ’88 is editor-in-chief of Modern Luxury’s CS magazine and group editor of the company’s six other Chicago titles. Zivan is the former editor-in-chief of Indianapolis Monthly and was an editor at Chicago magazine.
Please share your stories with TheDEN in the comments section and with Denison Magazine (firstname.lastname@example.org) about your encounters with Alzheimer’s disease and dementia. Unfortunately, the scale of the disease means that nearly all of us will be touched in some way by the emerging epidemic. And watch for the latest issue of the magazine to meet the alumni who are working to fight it.