NEW YORK CITY
Fall 2014
With Joan’s help, we interviewed a wonderful home-care worker: a young Jamaican woman named Colleen whose last client had had Alzheimer’s. Colleen had just become available, Joan told us excitedly; this was a stroke of good luck. I was reminded of that saying about doors: when one closes, another one opens. The reason Colleen was free was that her last client had died.
Colleen was well educated, well mannered, and imbued with a really positive attitude—impressive in her line of work. But I could sense B. holding back. After twenty-two years of marriage, I knew the first signals as well as the nose on my face. That very polite but slightly cool tone, the smile that departed just a little too soon, the tendency to listen and not ask questions…By the time she crosses her arms over her chest you know you’re fighting for a lost cause.
Why? I wondered. But I knew the answer even as I posed the question in my mind. Colleen was a little too well educated, and maybe a little too attractive. The last thing B. wanted, in her diminished state, was a rival in her own house. Or so she felt. So excuses were made, and the post remained unfilled.
Meanwhile, I saw nothing wrong with putting B. alone on a jitney to Manhattan. A jitney, understand, is how most New Yorkers get to and from the Hamptons. Someone had the smart idea to call it the Hampton Jitney so people wouldn’t think they were taking a bus. It is a bus, but a nice one, and parents feel fine about putting their ten-year-olds on it unaccompanied, as long as there’s someone to meet them at the other end. I put B. on, told the driver to keep an eye on her, and said she’d be getting off at the first Manhattan stop, where her stepdaughter would be waiting for her. I needed to stay out in Sag Harbor and take care of business. Everything seemed under control.
The reason B. was headed in on her own was to buy a nice gown for a benefit lunch the next week. She still had all those gowns in her closet, but somehow none of those would do. I could have argued but…why? A new dress might lift her spirits, as it had before all this. In truth, I wasn’t sorry to be getting a day to myself. Guilty—hell, yes. But not sorry. Anyway the lunch was a fund-raiser for a wonderful group called the Alzheimer’s Drug Discovery Foundation. B. was to be the luncheon’s honoree; she would be getting an award, and giving a speech, for becoming a spokesperson for Alzheimer’s research.
The only problem with this plan was that Dana had gotten confused about when B.’s bus arrived in Manhattan. She’d thought it was due an hour or two later. When I called Dana to remind her the bus was arriving at 2 p.m., she exploded in that way I knew so well. “I’m on a bleeping train to Westchester to see a litter of puppies. I thought she was getting in at three p.m.” Ever since Dana had given Bishop to us, she’d felt glum about not having a dog of her own. The litter she was going to inspect was of Italian mastiffs—Bishop’s breed.
I called Ionia, B.’s friend and former stylist, who had volunteered to help B. do her gown shopping. Ionia had planned to meet B. and Dana at Lord & Taylor. Instead, she rushed over to Fortieth and Third to meet B.’s bus just in time. I would have called B. to tell her Ionia would be greeting her, but I couldn’t: foolishly, I was still hoping we would find her lost phone, since it had to be in the house somewhere. As a result, she had no phone. Nor did she have any sort of identification necklace or bracelet, let alone a GPS tracking device. Why, when being on the jitney was as safe as being at home, a closed container from point A to point B? Or so I thought.
Dana met them at Lord & Taylor, still steamed at getting the times confused but grateful that Ionia was there. B., she knew, would never go for a dress that Dana picked for her. It needed Ionia’s seal of approval.
Dana thought she would at least participate in the choice. Otherwise, why be there? Instead, Ionia and B. emerged from a dressing room with a purple dress in hand—purple being the official color of the national campaign against Alzheimer’s. “This is the one,” Ionia declared. Dana put it on her credit card—B. no longer carried them with her, at my insistence; I would of course reimburse my daughter. The dress was set aside to be overnighted to Sag Harbor, and Ionia and Dana took B. downstairs to find shoes for the dress.
B. hated the first four pairs of shoes Ionia showed her. Worse, she was now confused. She couldn’t recall what her new dress looked like.
The three of them went to take another look at the dress. “Okay, Mom, you got it?” Dana said. “This is the dress.”
B. nodded, and the three of them trooped back down to the shoe floor. None of the next pairs met B.’s approval, either. Now she no longer recalled buying a dress at all.
“This is bullshit!” Dana exclaimed. Again they went to the dress floor; this time Dana took pictures of the dress. Now when they went down to shoes, B. could at least see what she was buying, and look for shoes that matched.
By the time Dana put B. on a 5 p.m. jitney back to Sag Harbor, both daughter and stepmother had calmed down. Dana always remembers—sooner than I do—that getting angry with B. is unfair and a waste of everyone’s emotions. As for B., she just forgets why she was tense in the first place.
From Manhattan, the bus went straight to the Hamptons without a stop. Then it pulled into Southampton, and afterward came to Sag Harbor. I would be there when it pulled into Sag Harbor, right in front of the American Hotel.
Still, I couldn’t help but feel guilty at the thought of B. alone on that bus, riding east in the dark. Would she know where she was, and why she was on it? Would she know I’d be waiting to meet her and get her safely home?
Or would she sit there wondering where she’d come from, and where she was going? And if she did, what would she feel then?
That night she got off right on time in Sag Harbor. I was there to greet her, and sweep her in to a festive dinner at the American Hotel. I remember thinking what a blessing it was that B. could still ride in and out of the city on the jitney herself. And that I’d been wrong to be so worried.
I wouldn’t think that way for long.
A week later, we drove back in to the city together for the Alzheimer’s benefit luncheon at which B. would be honored. We had written out a statement for her to read, and she was happy with it. For all that Alzheimer’s had done to her, B. was perfectly capable of reading aloud a simple acceptance speech. Nor, I thought, would she have any jitters. Clouded as her mind was, B. was still the consummate professional. She knew how to work a crowd.
As the city skyline loomed, I snuck a sidelong look at her. She was fine. I was the one with jitters, I realized. Was I wrong to be doing this, putting her onstage in front of a crowd, even a sympathetic one? That’s what Dana had felt. She would be there, too, but she wasn’t happy about it. She felt the whole thing was a mistake.
As guests of honor, B. and I sat at a big round table in the Pierre hotel with family and friends. Along with Dana, there was Tichina Arnold of the television series Everyone Hates Chris and Martin. S. Epatha Merkerson, another television star, had played the lieutenant in Law & Order for seventeen years. Maurice DuBois, the WCBS anchorman, was there; so was Rashid Silvera, a longtime male model and dear friend of B. from her early days; Grayce Galioto, B.’s onetime assistant; Edward Robinson, B.’s oldest New York City friend; and Inez Richardson, head of the Metro-Manhattan branch of The Links, Incorporated, the national nonprofit group of African American professional women. A lot of these friends hadn’t seen or spoken to B. in weeks or months. Rapunzel hadn’t let down her hair very often.
Paula Zahn, the glamorous television news anchor, was the luncheon’s hostess, making her opening remarks to a packed banquet room of at least 250 people. Almost everyone there had some experience with Alzheimer’s—a wife or husband, father or mother.
I thought B. was the only one who would actually have the disease, but I was wrong. Quite a few did, and came up to identify themselves that way to us.
B. sat beside me in the elegant purple gown she’d chosen, nodding and smiling as her old friends addressed her. She seemed more than fine: happy and animated. Only if you kept conversing with her would you realize something was wrong: a question repeated, a strange comment out of the blue. To one friend she said how lovely the luncheon was, so much so that she wished she’d thought to invite her parents.
There, too, was the renowned doctor who leads the Alzheimer’s Drug Discovery Foundation (ADDF), Howard Fillit, along with a West Coast colleague and ADDF-funded researcher, Dr. Michael W. Weiner. As Paula Zahn explained in introducing them, the ADDF is totally focused on new drug trials. Leonard A. and Ronald S. Lauder, billionaire sons of the late cosmetics tycoon Estée Lauder, underwrite nearly all of the ADDF’s administrative costs, so that all donations go straight to research. That leaves the doctors free to focus on the science, and work up clinical trials for the most promising new drugs.
Unfortunately, as Dr. Fillit told us, the news from the drug front wasn’t good. The French drug company Sanofi had recently spent $1 billion on a new drug, to no avail. “To date, the pharmaceutical industry has spent well over ten billion dollars on drug research, including Phase 3 clinical trials that cost about three to four hundred million dollars each, and we have had a 99.6 percent failure. That can’t go on forever,” Dr. Fillit warned. Companies can’t keep taking these huge risks without eventually saying this is too hard, and getting out. In fact, that is already happening. That is why we need philanthropy to create innovation and take risk, and partnerships between philanthropies, government, and industry to spread the risk.”
There was one piece of good news: the PET imaging that now made possible clear diagnoses of Alzheimer’s. At least, from now on, researchers would know that every patient in a new trial actually had the disease, rather than guessing from symptoms, only to learn after the three or five years of a trial that many of the participants had something else: another form of dementia, or just a naturally fading memory. “So instead of spending fifty million dollars on a trial with hundreds of participants to be sure we had enough with Alzheimer’s, we can spend half that on a much smaller trial,” explained Dr. Fillit’s colleague Dr. Weiner. “Unfortunately, only 5 percent of Alzheimer’s patients enroll in clinical trials. We need a lot more to join the fight.” Dr. Weiner had an answer for that: a new, national sign-up operation he called the Brain Registry.
Now it was our turn. Paula told the crowd about B., and spoke of her courage. I guided B. to the microphone and gave her an encouraging squeeze. She started out fine—One-Take B. Then a wave of emotion washed over her, and she started to cry. Embarrassed, she turned her back to the crowd, and I stepped in to help. It was fine: no one in that audience was anything less than 100 percent understanding. I kept going until B. recovered and turned back to face the crowd. Then she threw her arms around me. “Don’t I have a wonderful husband?” she called out. The crowd roared its approval.
The speech was put aside. For the next few moments, we just went on instinct and pure emotion, each of us speaking from our hearts. I don’t remember all we said—it was a blur. But I do remember where it ended up. “Don’t fear Alzheimer’s,” I said. “Hate it. And fight back—with the one weapon we have, money, to develop the drug that finally beats it.”
We got a standing ovation. And I think I can speak for both of us in saying that for that moment, with all that love washing over us, we were really happy.