Four
Mom’s condo was part of a retirement community that provided two meals a day, weekly cleaning, and laundry service with the monthly assessment. You could pay extra for certain amenities, like having a nurse stop by once a week, once a day, or multiple times a day and hover—tapping her foot impatiently—while your parent took her medications as slow as humanly possible and with her face set just so. There were additional charges for bathing and hair care. For a fee your mom could take the bus service to the local grocery store as well as a number of different churches and medical centers, wander around, get lost, then get picked up again after having no recollection of where she’d been or what she’d done. The retirement community offered organized activities such as bingo, musical events, movies, and sing-a-longs. Mom didn’t participate until her dementia advanced and Vicki encouraged her. Vicki could get her to enjoy herself. I didn’t have the patience.
~
When Mom turned ninety my sisters and I took her to Florida to celebrate her birthday. We lost her at a shopping mall in Boca Raton.
It turns out that losing old people is a major problem. Those with dementia have a tendency to wander off, or even drive off. Time is critical and the outcome is often bad, meaning they are found dead. My sister Beth and I sat together in the shoe department at Nordstrom—Beth was trying on something comfortable, expensive, and ugly—when I let Mom walk to the bathroom by herself. Because I didn’t have the patience to take her. After all, I could see the entrance to the Ladies Room from my chair; it was less than fifty feet away. And we—I—still managed to lose her. Luckily, we were at an indoor mall, I remembered exactly what she was wearing, and the mall was in Florida where losing-old-people happens with some frequency. Security uses Segways, allowing them to find missing persons with a reassuring rapidity. They found Mom within twenty minutes—she’d wandered amazingly far in a short period of time—and without her realizing she’d been misplaced. Mom survived my neglect. But what did it mean, cognitively? She took a wrong turn, it could happen to anyone.
~
Over thirty years ago I met a woman who had critical lessons to impart about caring for an elderly parent. If I’d been paying attention, I might have learned them. They were all wrapped up in one brief experience, one night long ago. But I got the lessons wrong. It took years before I understood.
The woman stood silhouetted in the soft light coming from the doorway of her father’s hospital room. I was mid-way through my internship year. Though she told me her name, I would forever think of her as the conductor’s daughter; I would always remember her as Nathaniel’s daughter.
It was near midnight and I’d just gotten round to eating dinner: a tuna salad on whole wheat sandwich, the remains of which were room temperature, runny, and stuffed into the back pocket of my scrub pants. Nathaniel’s daughter wore elegant clothes, but her suit hung rumpled, as if she’d been caught in the rain then fallen asleep. Dirt streaked her Ferragamos with their iconic buckles and low heels, the rich woman’s version of a sensible shoe. She stood still, wraith-like, hands clasped. As I approached, I noted the scent of something herbal. Patchouli? Somewhere I’d read that as few as four molecules of a given substance can be perceived by a sensitive nose. My nose is not only sensitive; I can smell disaster at the molecular level.
~
I don’t consider us lucky that Mom wandered off at the mall that afternoon in 2007, but we were fortunate that it happened when my sisters and I were together. We were forced to deal with it. We recognized that Mom had crossed into a territory beyond which there was no turning back. This was new. The implications, the inconvenience, and the cost of this next giant step forward seemed enormous. But convincing our mother that she needed a caregiver would require another two and a half years. We had to balance her safety against her dignity, her security against her autonomy. Role reversal took on complex layers of meaning. We used the utmost care in how we approached various issues—her medications, her checkbook, her finances—and each of us did it differently with equally poor results. We had already taken away her car after she’d broken her neck while playing golf at the age of eighty-eight. She wanted to maintain what precarious independence she had left. Who could blame her?
~
“There you are, Doctor.” The Ferragamo woman, older but vulnerable somehow, oddly dispossessed, went from still to a flurry of animated motion, as if life had placed her on pause and my arrival pushed her play button. “Thank God you’re here!”
~
Dementia doesn’t look the same every day to every person. It doesn’t always sound like anything out of the ordinary over the phone. Mom had days when she could carry on a conversation as if she were twenty years younger, days when she remembered the names of all her grandchildren, where I worked, all the details of her past life and mine. And on those days, I agreed with her that she did not need a caregiver. But then she would ask me a question about a topic we had discussed just moments before. Her short-term memory could turn itself off and on and off, unpredictably. The ability to remember what just happened, where you are and were and what was said allows you to function in ways we implicitly take for granted. Our tendency, as offspring, is to use all the available evidence to underestimate how much our parents have declined mentally—it’s a well-described cognitive bias called the valence effect, or optimism bias. It’s also known as wishful thinking. In the evenings and at night, Mom often hallucinated. When I called in the mornings, she would describe her hallucinations to me. It’s hard to pretend everything is okay when your mom describes a midnight visit from a long-dead dentist.
I try now to deconstruct those experiences with my mother. I thought of myself as levelheaded at the time, but in retrospect I wonder. Dementia plays you like a seesaw, only the fulcrum refuses to stay put. As adult “children,” we struggle with how to make decisions for the parents who once made decisions for us. We often depend on physicians but aren’t certain who to trust because of the conflicting information and advice we’re given. The flip side of wishful thinking is to err on the side of caution, which unfortunately means being hamstrung by guilt and doing too much of everything, whether it’s indicated or not. Who wants that kind of medical care?
~
The bedraggled woman grabbed my hand and pulled me into the room where an old man lay on a hospital bed. His eyes were closed; his mouth was open. We call this the “O” sign. Commonly seen en route to the “Q” sign.
“My father’s miserable.” She gestured toward him, still grasping my hand in hers. “I hope you can help him.”
“What seems to be the problem?” Looking down at our joined hands, I felt the moist scratch of her freshly bitten cuticles. I used to bite my cuticles, too. Working one week in a hospital cured me forever. “Hello, sir,” I said to the patient while disengaging from the daughter.
“His name is Nathaniel,” she spoke low and directly into my ear. “Nathaniel Corpisi. You’ve probably heard of him.”
“Hunh,” I said.
“He can’t urinate.”
“Okay. Let me go and grab his chart. I’ll be right back.”
“But Doctor,” her jaw clenched tight, “you are going to do something, aren’t you?” She grabbed me again, both hands on my forearm, twisting. The patchouli, at close range, was potent—way more than four molecules. “You are going to help my daddy! He is a very famous conductor, you know. He’s conducted some of the finest symphony orchestras in the world, traveled everywhere. We spent holidays in Russia, Vienna, London, and he was the