TWENTY-FIVE

NEW YORK CITY

November 25, 2014

From Howard’s office, Dana walked B. to the nearest jitney pickup: Lexington Avenue near Fifty-Ninth Street. The sky was the dirty white of possible snow, darkening on this late November afternoon as the bus drew up. Dana helped B. find a seat, then told the driver her mother had Alzheimer’s. Could the driver keep an eye on her, and be sure she got off not in Southampton—the first stop in the Hamptons—but in Sag Harbor, the stop after that, where I would be waiting for her? The driver said he would—or so Dana recalled.

Three hours later, as the bus rolled up to the American Hotel, I was there to greet it. One by one the passengers disembarked. I was sure that B. would be the next one, or the one after that. She wasn’t. Panic gripped me as the last passenger climbed down. I bolted up the bus steps to ask the driver what the hell had happened. No, he said, no woman fitting B.’s description had gotten off in Southampton. “Well then where is she?” The driver just shrugged and said he had no idea. Even if he’d seen her get off in Southampton, he told me defensively, he couldn’t have stopped her. He couldn’t stop someone from getting off the bus. Well then, why had he said he would?

At that Southampton stop, there’s an inside waiting area where you can sometimes get coffee and a bagel, or even a glass of wine. Surely B. had gotten off in Southampton and was waiting for me there. Where else could she be? A jitney employee checked: no luck. The waiting area was empty.

Now the full impact of this hit me. B. had vanished. She had no phone. She’d lost the gold handbag in which she kept her driver’s license and credit cards. I’d put some secondary identification in a little clutch bag she’d taken with her. But how likely was she to have it still with her? She could easily have left it on the bus.

Here’s the stone-cold truth: you can never truly, fully appreciate how much you love your partner until you feel you might have just lost her forever. The woman I’d married—the woman I’d loved since that first night I saw her on Valentine’s Day, 1987—was already gone, her mind diminished, her very character wearing away. Yet she was still my B., still the woman I could hold, still the sweet companion who told me how grateful she was that I took such good care of her. I wasn’t feeling like I was doing such a good job taking care of her now. My B. had just vanished, with little or no awareness of wherever she was.

I called the police but learned it was too soon for them to conduct a search. As the evening hours passed, and a cold rain came on, all I could think of was whether she was safe, and where she might be, and how irresponsible I’d been in letting her get on that jitney alone. The phone kept ringing, but it was never her, nor anyone calling to say they’d just run into her. I talked to Dana a dozen times, and got an earful each time: my daughter reminded me in no uncertain terms that she had disapproved of my putting B. on the jitney before, on the trip to get her fancy gown. Why had I gone ahead and done it again? It was stupid, and thoughtless, and now look what had happened. Under her recriminations, I felt Dana’s own guilt, as strong as my own. I knew she felt that by putting B. on the jitney, even at my urging, she was to blame as well.

After a sleepless night, I had to face the reality that something awful might have happened to her, and that it was time for the police to get involved. The Southampton jitney stop wasn’t in Southampton village; it was on busy County 39, a four-lane road lined with car dealerships and medical buildings all closed by 8 p.m. There was no nearby diner or coffee shop where B. might have huddled through the cold and rainy night. I’d checked those farther away—no luck. Any decent person who had come in contact with her would have called the authorities by now. To me that left only two possibilities. Either she’d walked into the woods alone and spent the night outside, or some psychopath had abducted her.

Alarmed now, the police put out an Amber Alert for B. throughout Suffolk County. They started filing a more formal missing person’s report, too.

At a friend’s suggestion, I called the local television news station and the local radio station. Then I took it a step further: I called the major New York City newspapers. I had mixed feelings about that; it was like swinging a bat at a beehive. But as mortified as B. would have felt if she’d been able to understand it, I just felt it was another way to get the word out—a card we could play because B. was well-known. Why not? I’d do anything to get her back.

By 10 a.m. that Wednesday, a media caravan had descended on our Sag Harbor house. There were video cameras and microphones and lots of people—for me it was all kind of a blur. Fox News and CBS News were the first to get out the word; USA Today soon followed. “An alert has gone out for famed restaurateur and former model Barbara Smith, known as B. Smith, who has Alzheimer’s and has been reported missing on Long Island….Police in Sag Harbor, where she lives, confirmed that there is an open, active missing person investigation seeking Smith, and asked for the public’s help in finding her.”

I’ll never forget that Wednesday morning, how slowly the minutes passed. The press stayed encamped at the house, waiting, as I was, for news. Emails and calls were coming in constantly, from all over the country and abroad. Apparently those first news stories online had gone viral. I’d known a lot of people out there loved B. I had no idea how many. All those voices of love and concern—it was incredible. I wished I could have appreciated them more. All I could think about was B. I kept looking out at the rain, cold and raw, hoping she wasn’t exposed to it, hoping wherever she was she was safe, and warm, and dry.

And then, as shockingly as it had begun, the ordeal ended. Out of the blue at about 2 p.m. that day came a call from a Sag Harbor friend of ours, Terry Steiner. Terry and her husband, Roger, had a house in Sag Harbor, but that’s not where Terry was.

She was in Manhattan.

Terry had run into B. at a diner called La Parisienne on Seventh Avenue between Fifty-Seventh and Fifty-Eighth streets. Terry had just happened to walk in, and seen B. sitting at one of the tiny tables. B. greeted her warmly, but looked disheveled and disoriented—and wet.

Terry hadn’t heard that B. was missing, but she did know B. had Alzheimer’s. Still, she might have said hello and moved on. After all, B. was just a block from our old apartment on Central Park South. Clearly she’d gone there because it was familiar to her; La Parisienne was a favorite quick-bite place for us. And despite her appearance, B. was cheerful as always. But Terry was sensible enough to take action—and for that, I’ll always be profoundly grateful to her. Not having my cell number, she called our restaurant on Forty-Sixth Street; a restaurant employee then called Dana, and Dana called me.

Dana was a stew of emotion, grateful and relieved but also frustrated. First she had lost her birth mother; for the last seventeen hours, she had had to fear that the stepmother she loved as her real mother was gone, too. I got it—and felt awful. No more jitney rides alone for B., that was for sure.

Terry stayed until Dana arrived to take B. to her Chelsea apartment. B. was, of course, happy to see Dana, but in the way she might have been to see her after a little trip to the store. She was thrilled to see the newest family member in Dana’s tiny studio apartment: Sansa, the Italian mastiff puppy Dana had just gotten to replace Bishop, named after a character on the HBO series Game of Thrones.

After Dana’s relentless questioning, the mystery was solved. B. hadn’t gotten off the jitney in Southampton and then boarded a bus back to New York, as I had imagined. She’d never gotten to the Hamptons at all. Between Fifty-Ninth Street, where she got on, and Fortieth Street, the jitney’s last stop before leaving Manhattan, B. had forgotten why she was on the bus—and gotten off at Fortieth Street.

The details were in bits and pieces, like shards of a broken mirror. B. had walked the streets of the city all night—that much was clear. She was wearing heels, and her feet were badly blistered. Apparently she had walked first up to Harlem—she said as much—then all the way down to Battery Park. At some point she had taken a ferry to Staten Island; she remembered someone recognizing her, and singing songs with a group of people. She’d come back on the ferry, and then resumed walking, all the way up to La Parisienne. Whether she’d huddled for some hours in a doorway like a homeless person, or possibly come by the restaurant on Forty-Sixth Street long after it had closed for the night, and tried to get in—these were details we’d probably never know. They were lost already in B.’s fog.

As soon as I could gently ease the media and various concerned neighbors out of the Sag Harbor house, I drove in to Manhattan to Dana’s apartment. Dana was relieved, and B. was happily playing with the puppy: as Dana had said to Dr. Howard Fillit, B. was more and more like a puppy herself. She apologized for scaring us both; she knew enough to know she’d done that. How much more she knew was hard to gauge.

At least I had B. back, and she had us. For all we had lost, we were still a family, and on the day before Thanksgiving, that was a lot to be grateful for. Dizzy with relief and happiness, I put B. in the car and drove her out to Sag Harbor as I should have done the day before. The next week, she would have no recollection of that ride.

With all the excitement, it somehow didn’t occur to me to ask if B. was hungry until we rolled into Sag Harbor. She was. What did she want? Not kale, or berries or sardines—none of that Mediterranean diet tonight. “Hot dogs,” said B. with a grin. “That’s what I want.”

So we went to the market and bought a dozen Hebrew National hot dogs, along with Häagen-Dazs Dulce de Leche ice cream and various kinds of Pepperidge Farm cookies. Back at the house, we ate and ate, happy as fridge-raiding kids. Then I helped B. into a hot bath, put her into warm, dry pajamas, and we got into bed to watch an old movie with our ice cream and cookies.

The next day was Thanksgiving. No turkey dinner for us: we were just thrilled to sleep late and spend the day together.

I was exhausted, but thoughts were churning in my mind. For me, as B.’s caregiver, this was a wake-up call I’d finally heard. Joan, our strong-willed advisor from the Alzheimer’s Disease Resource Center, had warned us before: no more leaving B. on her own. I’d thought the jitney was an exception, and Dana had certainly made it clear to the driver that B. had Alzheimer’s and mustn’t be let off before Sag Harbor. How had he heard that message at Fifty-Ninth and Lexington, and forgotten it by Forty-Second Street?

At the end of the day, though, I was still the one to blame. However inattentive the driver might have been, I was the one who’d made the choice to put B. on that bus in the first place. I made that choice in the State of Denial, a place I intended never to visit again. A lot would have to change—right now. Yes, we would get home-care help, hopefully someone B. liked, right away, but if not, then someone she grew to like. Saying no to one candidate after another was no longer an option. We would get B. an Alzheimer’s bracelet and a GPS tracking device. We would not let her ride on the jitney alone; we would not leave her home alone without someone to watch her. All this, plus daily exercise and that healthy diet, we would resolve to do. We would also have to face the realities of medical insurance. How much would all this cost, starting with the daily home care? Would Medicare pay for it, now that B. was sixty-five? If not all, how much?

—

But I wasn’t just thinking about us. I wanted to know why medical science hadn’t gotten further with this disease. Why had no one yet come up with a treatment or cure? We’d gone public to help eradicate the stigma of Alzheimer’s, especially in the black community, and I wanted us to do a lot more. I wanted to do more than the occasional TV appearance and newspaper story. I wanted to use our platform to say to the scientists and doctors, the drug companies and policy makers of America: let’s do something big about this. More than thirty years ago, AIDS had swept out of Africa like a global storm, and many had died, but then activists had pushed drug companies, and policy makers and politicians had helped, and out of that devastation had come a “cocktail” of drugs that turned AIDS from a killer into a manageable disease.

Where was our cocktail? Where was our Manhattan Project for Alzheimer’s? Where was our Hail Mary pass for the 5.2 million Americans suffering with Alzheimer’s right now?

To be smart about that, to know what the hell I was talking about, I wanted to learn what was going on—in the labs, at the drug companies, in the halls of Congress. I wanted to know—and then I wanted to help push it all where it needed to go.

LESSONS LEARNED

COGNITIVE TESTS, GAMES, AND BOOKS

Dr. Fillit conducted quite a number of cognitive tests with B. and brought, of course, a lifetime of medical expertise to analyzing the results. The fact is, though, that anyone with a fading memory can download cognitive tests and be his own judge of whether the results justify voicing concern to a primary care doctor. And for loved ones in the first, mildest stage of Alzheimer’s, a number of brain exercise tests and games may just help slow the progression of the disease. Even if the science is sketchy on just how much they help, they sure can’t hurt.

The Alzheimer’s Association lists a dozen or so memory game and test sites. Some are free, some aren’t, but none are expensive. Among the free ones: www.fitbrains.com, www.aarp.org/​fun/​puzzles, and www.setgame.com. The fee sites include http://mybrainteasers.com, www.happy-neuron.com, and www.brainhq.com.

Our personal favorite is www.lumosity.com. It’s a trip! You can try it for free at first, and it’s well worth the time. Before you know it, you’re looking at cards, trying to remember if the new card matches the card you just saw—or steering different-colored trains into their proper train sheds, clicking to turn the tracks that get them where they’re supposed to go. You tailor a program of games to your needs: memory, attention, speed, flexibility, and problem solving. And then you do the games several times a week. It’s like push-ups for the brain—but more fun—for about fifteen dollars a month.

Here, too, are just some of the books that also have puzzles and games to test and strengthen the brain:

Get Your Brain in the Fast Lane, by Michel Noir and Bernard Croisile

365 Exercises for the Mind, by Pierre Berloquin

The Memory Bible: An Innovative Strategy for Keeping Your Brain Young, by Gary Small

And finally, two books for Alzheimer’s patients no longer able to play games quite as challenging:

The Best Friends’ Book of Alzheimer’s Activities, by Virginia Bell, David Troxel, Tonya M. Cox, and Robin Hamon

Alzheimer’s Activities That Stimulate the Mind, by Emilia Bazan-Salazar

WANDERING

Wandering is an all-but-inevitable symptom of Alzheimer’s, a direct consequence of damage to the brain. The wanderer may have intended to go from point A to point B but gotten lost en route. She may feel determined to get oriented on her own—like a subway rider who emerges from a station confused, for a moment, about which direction to head. Only the wanderer, unlike the commuter, can’t get her bearings. That may make her anxious, and further impair her ability to find her way home. She may just wander out of curiosity or boredom.

One good measure is to have an ID bracelet or necklace made for your loved one with name, phone number, and nature of the disease (“Alzheimer’s” or “memory impaired”). A new generation of GPS-equipped locator devices has made a huge impact on the issue. Some are worn on the wrist, others are pagers, still others are attached to cars. A loved one’s family can follow a wanderer’s path on-screen, as satellite signals track her. The Alzheimer’s Association offers Comfort Zone, which also has a 24/7 hotline with a national search program. (See Resources for more details.)

Wandering is exacerbated if the patient moves to a new home, or starts going to a new daily care center; she may be unable to process that this is where she should go.

Wandering confused in Manhattan is, by definition, potentially dangerous—but in a rural area, in perhaps very cold weather, it can be life-threatening. Most wanderers go no farther than a few miles from their homes, and can generally be found by police. Maddeningly, when asked, they tend to deny they’re lost. That was the case with B. Even after wandering all night and morning, she still didn’t tell our friend Terry that she was lost. Terry had to sense that herself.

Along with providing the loved one with a GPS tracking device, helpful measures include hiding the car keys, not leaving a wanderer in the car alone, and providing as much of a daily schedule for her as possible.

For the caregiver, wandering can seem a form of rejection. It isn’t. It’s just part of this dreadful disease.

THE A’S OF ALZHEIMER’S

There’s some debate in the field about how many “A’s” of Alzheimer’s there are: four, five, or more. I count eight. Here they are, in alphabetical order:

• Agitation: nervousness and alarm, with a tendency to restless movement

• Agnosia: a difficulty with processing sensory information, leading to the inability to recognize familiar objects, tastes, sounds, and other sensations

• Amnesia: loss of memory

• Anomia: inability to remember names

• Anxiety: persistent and excessive worry or concern

• Apathy: general indifference, inability to feel optimistic and happy

• Aphasia: inability to express oneself through speech

• Apraxia: the loss of fine motor skills