NEW YORK CITY
Winter–Spring 2014
One day about five months after the diagnosis, we went to Mount Sinai for a checkup with Dr. Goldstein. Once again we filed into his tiny, dimly lit office, took two of the scrunched-together chairs, and struggled for legroom against his desk. Once again he turned his computer screen toward us so that we could see B.’s brain scan with its amyloid plaques.
“Last time we tried Wellbutrin/bupropion XL, two hundred milligrams for executive cognition,” Dr. Goldstein began, addressing his remarks to B. “The cognitive symptoms were taking a toll on your morale. That was leading to depression symptoms.”
B. nodded.
“Separate from the depression, Alzheimer’s can produce distraction…keep you from focusing. That can make your memory worse. Also, depression becomes a risk factor in the progression of Alzheimer’s.” He paused. “Looking back in terms of your spirits overall, how do things seem? Better? Worse?”
“Better,” B. whispered. She started tearing up.
“Some tearfulness is to be expected,” Dr. Goldstein said. “If things make you sad, you should feel sad, but I want you to be in control of those experiences.” Had B. felt in control of her feelings? he asked.
“Sometimes,” B. said. “In general. I feel good, but I’m a little emotional from time to time.”
B. started crying quietly. Dr. Goldstein waited until she stopped. “Any new symptoms?” he asked me.
I told him about the sugary midnight snacks. Also that B. had begun closing doors—closing herself off in one room or another to take naps that went on for hours.
Dr. Goldstein was more worried about the closing of doors than the midnight snacks. “What feels better about being by yourself?” he asked.
Out of nowhere, B. laughed. “It’s not always that I want to be by myself!” The doctor and I laughed, too. We knew what she meant. I could be a pretty intense guy. Sometimes she just wanted to get away from me.
“I’m going to start a gentle additional antidepressant—Lexapro,” Dr. Goldstein told us. “It tightens things up a bit, maybe makes you less vulnerable to wanting to isolate.” He paused. “If I met you five years ago, would you have been someone who preferred closing the door?”
B. shook her head. “No,” she said quietly.
The immediate goal, Dr. Goldstein explained, was to get B. to be less “isolating” and less tearful. She should be sure she took her Aricept—the drug that specifically addressed her short-term memory loss. That was the one she needed to take for three months, consistently, before she could enter the clinical trial for the new insulin-based drug.
“The sweet tooth,” Goldstein asked. “Any reflections on that?”
“I’m going to try not to have those things,” B. said sheepishly.
“We want you to enjoy things, have pleasures,” Dr. Goldstein said. “We just want to be sure it doesn’t become a compulsion.”
B. sat quietly, on the verge of tears again.
“Talk to the doctor, honey,” I told her. “What do you feel?”
B. cried again.
“She’s a little embarrassed,” I explained to Dr. Goldstein, “because she’s always bedazzled everyone, cooked, come out, smiled; now she has to think about…everything. It’s tough.”
“It’s unsettling and dispiriting, I know,” Dr. Goldstein said. He smiled sympathetically. “All the more reason we have to restore some of your confidence.”
Easier said than done.
For this job of caregiver, which I hadn’t signed up for, hadn’t bargained on, never anticipated, I was doing my best. But my best wasn’t good enough, not if I flared at the wife I loved who couldn’t help herself. So that made me feel even worse: not just frazzled and tired and very depressed but guilty.
Since then I’ve learned that that’s all too common among Alzheimer’s caregivers, even the millions who are better at it than I am. Even the Mother Teresas! You’re human. You can’t help snapping sometimes when your loved one loses her handbag for the third time that morning, or asks you the same question again and again. It’s just human to get annoyed. Counterintuitive as it seems, the trick is to care for yourself first. Take the time off you need, get a good night’s sleep, let yourself have a little fun for a change. And when a friend offers to sit with your loved one for an evening, and bring over a home-cooked meal, don’t be the martyr who says, “No thanks,” to that. Your answer is: hell, yes.
In this “mild-stage” world we were in, neither B. nor I thought we needed a health-care worker coming into our home. B. was adamant: she didn’t want anyone underfoot and in her personal space. She certainly didn’t want someone telling her what to wear and how to cook! A couple of times, we did try bringing someone in on a very part-time basis, and found that he or she showed a little too much interest in our personal lives. Maybe they were just trying to be helpful, not getting nosy about a woman who had had her fair share of celebrity. But I was wary.
As for friends pitching in, that just never turned out well. Real friends had busy lives, and for all their earnest intent, they backed off after a time or two. New friends—or, shall we say, acquaintances—simply couldn’t be trusted, at least not by me. What if a “friend” borrowed money from B. while I was away? How would she remember to tell me about it, much less get it back? What if they hurt her or were unkind to her? The what-ifs were numerous. So we held off on bringing someone into our home, paid or unpaid.
Then, too, we’d always relied on each other. We were a small family—just the three of us with Dana, since B.’s parents and mine had all passed—and a very tight-knit one. We weren’t accustomed to asking anyone for anything. We didn’t appreciate yet that we were in a new world where the old rules didn’t apply, and where pride and privacy would have to be put aside. We just kept on as we had, pretending life was unchanged—or not changed so very much. Which led to the night of the car chase.
Dana was managing the restaurant now, and doing a good job, but no twenty-seven-year-old can keep a kitchen crew and waitstaff in line on her own, even a woman as blunt and tough as my daughter. You have to crack the whip—instill respect, even fear—and if that means firing the sous-chef who gives you attitude, you do it. That’s for the big mean owner to do. So I was down there almost every night, at least for an hour or two. But I’ll be honest, I was also escaping my caregiver role—without a backup—leaving B. in the apartment on Central Park South so I could grab a bit of the downtime I liked best: socializing with customers at the bar.
I may lose you here, but the fact of the matter is I really like bars—my own and a lot of others. I’m a social guy! I like chatting up people I find at the bar, buying the next round, sharing a few stories, a few laughs, some spirited debate. The television show Cheers said it all for me: the place “where everybody knows your name.” For a lot of years our restaurant on Forty-Sixth Street was just like the one on Cheers, with regulars there every night. Even now, with B. there less often, it sometimes felt like that. B. loved all this, too, before the veil of Alzheimer’s came down around her. Should I have stopped completely now that B. didn’t spend as much time with customers at the bar as she once did?
Anyway, I was there that night, at our restaurant bar, talking up two female patrons when B. walked in unexpectedly. She fixed me with a look, came right over to me, and punched me hard on the arm. Then she turned on her heel and marched out.
I was stunned—and embarrassed. True, the two female patrons were attractive. True, I was enjoying their company. One might even say, as B. declared later, that I was flirting a bit. Guilty as charged. But this was no different than a thousand other nights at our restaurant. Talking up the clientele, even flirting with the clientele, is part of the business, as every bar owner knows. B. had done her share on those nights, too. We both understood that the bar was our stage, and the roles we played were audience entertainment, but it was all left behind at the door. In all our years together, B. had never been jealous of me, nor did she have any reason to be. All that had changed here was B.
By the time I’d made my apologies to the women and gotten outside, B. was around the corner and gone. As I reached Eighth Avenue, my jaw dropped: there she was, driving past me in a black Mercedes-Benz G-Wagen, scowling at me through the closed window as she floored the accelerator. Her mood was startling enough, but even more confounding was how she had our truck. I’d just parked it down the street at a meter, and the garage in our apartment building had access to only one set of keys—the ones I was holding in my hand. Something told me to go down to the space where I’d parked the truck. The truck was there! So whose truck was she driving?