Slow Dancing with a Stranger Read online

  A well-dressed man in his midfifties caught up to me walking on a downtown street to say, “Your story was hard to watch. Too bad your husband doesn’t know how lucky he is. I don’t think my wife would be as good to me. I’m afraid to ask and find out.” Then he turned and crossed the street before I could respond.

  On a shuttle to New York, a sleep expert from Scripps recognized me and offered that lack of sleep over time increases the risk of dementia. “Be careful not to become the other victim of this disease,” he warned. I smiled, then closed my eyes. I had been up all night.

  At a dinner meeting, a scientist to whom I had just been introduced, pulled me aside to ask, “Please forgive my blunt question. Are you doing what you do for your husband out of love, or are you just trying to do the right thing?” I must have appeared perplexed because he quickly added, “I struggle with this question myself, which is why I asked. My wife was diagnosed three years ago. The woman I live with is becoming less and less the woman I fell in love with and married. I fell in love with a person, not a body. How must my relationship evolve? I asked you because you have had almost three times longer to think about it. I also asked you because I believe you will tell me what is real, not what is ‘correct.’” He deserved an answer, but then was not the time. I offered him my business card with a hug and a whisper to call me.

  Professional women, most of whom I didn’t know, contacted me out of the blue through e-mails. They both admired me and admonished me for sacrificing my career. A few shared the toll Alzheimer’s had taken on their own marriages. One woman e-mailed me that she thought I was brave going public. She added that she would draw the line on caring for her husband when he either became incontinent or wandered away. Most said they did not plan to take care of their spouses at home.

  I was mulling over the varied reactions when, one day, a woman I knew professionally called me and said she urgently needed to meet. Over breakfast at a neighborhood bakery, she confessed that she was struggling to get both her husband and herself through the early stages of his Alzheimer’s diagnosis. No one yet knew that her handsome husband, a Washington insider, was in the early stages of disease. For now, at least, she preferred to keep it that way.

  I listened while she talked, her croissant untouched on the plate. Then she stopped for a moment, her voice catching, and said, “I saw you on the NewsHour program.” I waited to hear what she would say next. A few moments passed in silence. “I can’t do it,” she confessed. “I don’t want to be like you.”

  Before she could say anything more, I stopped her. Amid all my uncertainty about how to move forward, my constant debate over the right words to use, I finally knew what I wanted to say. I told her, “I don’t want anyone to have to be like me.”

  TEN

  THE MESSAGE HAS BEEN SENT

  It was a gray, cold winter day, January 16, 2007. The air smelled just the way it does before a snow as I drove to Reagan National to catch a morning shuttle to New York. The night before had not been easy. Just after midnight, Harvey had one of those frightening seizures that I had learned to recognize. It started with a sudden cold sweat and a glassy stare. Harvey’s skin color turned almost ashen, and his eyes rolled back in his head. The hardest part came next: the loss of control and bowel function, as his body writhed and twitched. There was nothing I could do to stop it. The doctors had coached me never to try to restrain him. All I could do was turn his head to the side so he didn’t choke on his own saliva or vomit, or swallow his tongue. Even though I knew how to manage the events, the four to ten minutes the seizures lasted always left me a bit shaken. That day, it was 1:30 A.M. before things settled down, and my alarm was set for 5:00 A.M. When I left for the airport, I was exhausted. I had no inkling that my journey that day would present me with not only an incredible opportunity but also the first stirrings of an emotion I hadn’t felt in a long time. Hope.

  I was scheduled to brief G. Thompson Hutton, Trustee of the Geoffrey Beene Foundation and CEO of Geoffrey Beene, LLC, on Alzheimer’s disease advocacy. The introduction had come through Lisa, who had passed my name along to this southern gentleman whom she’d met at the Slate 60 Philanthropic Conference at the Clinton Library in Little Rock, Arkansas. Lisa’s text was short and to the point. “If his office calls with a request to meet—JUST DO IT.”

  I did a search online but was hard put to find much information. I presumed the trustee preferred it that way. As it turned out, we were both scheduled to attend the Rita Hayworth Gala in New York later that week. At registration, I asked what table he was seated at and went over before dinner to quickly introduce myself. Three weeks later, a call came from his executive assistant with an invitation to meet at the Park Avenue Café in Manhattan at one o’clock.

  I pieced together that Hutton had personally spent the past two years establishing and launching the Geoffrey Beene Cancer Research Center at Memorial Sloan-Kettering Cancer Center. The Foundation focused on funding research designed to lead to new therapies for all cancers. It honored the famed designer, whose iconic career in fashion spanned forty years. As CEO of Geoffrey Beene, LLC, Hutton had transformed the global designer menswear company into a philanthropic entity where one hundred percent of net profits funded critical causes. It was an innovative business model—a unique positioning in the highly cyclical retail fashion industry.

  At this point in my life, I didn’t carry a résumé. What professional good was an updated résumé with a gaping twelve-year hole? What would I write in as my occupation—at-home caregiver, case worker, accountant, cook, memory keeper?

  My memories of the fashion designer, Geoffrey Beene, went back to the early 1970s, when I did a short stint right out of college writing for the style section of The Philadelphia Inquirer. My boss also oversaw the fashion column, so I got to open the garment bags filled with the latest fashions that were sent her way. The outfits cost six times my monthly salary, but I marveled most over those by Geoffrey Beene. His designs for women represented an American version of Paris couture, and a legion of well-heeled women collected them as others do art. I loved the sequined football jerseys that he made into floor-length evening gowns and his unconstructed men’s suit jackets, which conjured up the informality that came with power. I thought it inspiring that he showed his collections on ballerinas performing theatrical dance routines rather than models parading down a runway. Beene had been a medical school student before turning to fashion, and in the office we used to joke that he must have memorized Gray’s Anatomy to design his sculptured, slinky gowns.

  By the time I went to meet Hutton, my closet was filled with dated business suits that I never wore anyhow. I tried to make do with what I had, carefully choosing a black cashmere sweater, slacks, and a tailored menswear-styled houndstooth jacket with velvet trim on the collar. But walking along Madison Avenue on the way to the Park Avenue meeting, I wished I had something more elegant in my wardrobe than just memories.

  Then I got a reminder that no matter what I wore, I could never completely leave home. Two blocks from my destination, I received a frantic call. My on-duty nursing aide reported that Harvey was having another seizure and asked if he should call 911. That morning, I had instructed him on both the symptoms of seizures and walked him through how to manage the situation. Now I talked him through step-by-step what to do and waited until Harvey’s seizure subsided. Still shaking, I arrived at the restaurant on time.

  The chic, oak-paneled restaurant was surprisingly empty as I was led to my host’s table on the far left of the room. With him was a petite, effusive woman with voluminous auburn hair whom I recognized as his wife from a brief gala introduction. She volunteered they were celebrating a special day, but offered no details. It was not my place to ask.

  Immediately, I was struck by their energy as a couple. After three years of marriage, they still behaved like newlyweds. Their hands only unlocked when it was time to read the menu. I found it charming rather than territorial and it set the tone for a more casual business
meeting.

  After the waiter took our order, we settled into a more focused conversation about the Foundation’s structure, its mission, and a portfolio of charitable giving that included heart disease, protection of women and children, veterans’ support, and animal welfare. Now Hutton was looking to create an initiative around Alzheimer’s. He confided that he had received proposals from other major nonprofits but was unsatisfied. I talked about my personal frustration with the direction of Alzheimer’s disease advocacy, which lacked the energy that drove federal funding for both cancer and HIV/AIDS. Hutton mentioned that he and his wife had seen my story on PBS. I guessed that was the reason for his invitation.

  Just then my phone vibrated loudly enough for everyone at the table to hear. I excused myself, saying that I had to check in at home. I fled outside into the cold because the reception inside was so poor. My nurse was reporting back that Harvey was stable and he apologized for being shaken by the seizure’s sudden onset. I thanked him for reaching out as a precaution and reassured him I would not be late for my night shift. When I returned to the table, Hutton asked if everything was okay. I long ago learned that people didn’t really want the details. I gave him my standard reply: “As good as it gets under the circumstances.”

  Hutton then turned his attention to his real agenda. He ask me whether I was interested in setting up an Alzheimer’s foundation, to do on a smaller scale, what he had done with cancer.

  I was unprepared for the proposition. I certainly needed a job, but I was struggling just to take care of Harvey. The idea of starting a foundation, setting up the infrastructure, and recruiting a board was overwhelming. He asked me to give it some thought and send him a proposal built around a five-year budget. The dollars on the table floored me, but so did his faith in me. Asked if he wanted a list of references, he said, “That’s not necessary.” I agreed to get back to him with a proposal.

  I exited onto Park Avenue in a daze. I felt excited and frightened. Nothing good had happened to me in so long that it seemed unreal. I knew I couldn’t possibly take on more, but I couldn’t stop myself from thinking about the offer. I burst into tears, which immediately froze on my cheeks from the blast of cold. Outside it had just begun to snow. In the streets, the trees and lamps seemed to glisten with promise. Despite years of living in silence with Harvey, the dreamer in me was still alive. I now had a chance to be the steward of philanthropic dollars that, if properly focused, might be a catalyst to change the way the public viewed Alzheimer’s disease and help drive scientific inquiry. At that moment, I wanted to share the news but wasn’t sure whom to call. I immediately thought of Lisa and her hope that something good might come of the meeting. In a way, it already had. I texted a message as short and meaningful as her earlier one to me. “Surprise dream opportunity. Stay tuned.”

  Nothing was very different now from the circumstances that had forced me to leave my career twelve years before, but somehow along the way I had changed. I had the conviction and tenacity that came from personal pain. I set out to craft a proposal that reflected all I had learned with Harvey along the way.

  My deepest frustration as an advocate was that Alzheimer’s disease lacked the kind of activism that advances cures. There were some exceptions. Over the years, researchers came up with better clinical trial designs. They tried to organize more efficient ways to share data on promising drugs. Challenges to the FDA to allow more therapies to reach patients faster were beginning to surface from desperate families. There were growing public calls for making Alzheimer’s research funding a higher priority through the NIH, and more support for legislation to help caregivers.

  But at the time, it was a piecemeal fight in this country. By contrast, France, Britain, the European Union, Japan, Canada, and even developing countries like China and India, had announced national plans to fight Alzheimer’s. Our country had no similar prevention strategy.

  The demographics indicated that there were 86 million of us between the ages of fifty and eighty, the target ages for MCI, dementia, and Alzheimer’s. Yet this generation continued to focus on how to turn back the clock and redefine aging. It was hard to engage people on issues that most of us preferred not to face. Hutton challenged me to think “out of the box.” The new foundation wouldn’t have enough dollars to fund research for development of a drug. Its 501(c)(3) status prohibited involvement in any political lobbying. But we could raise awareness about the need to identify people at risk for Alzheimer’s, highlighting the importance of intervening before symptoms appear, with the goal of preventing what happened to Harvey from affecting others.

  In the late hours of my night shift, between Harvey’s night howling and diaper changes, I put my ideas down on paper in what slowly became the Geoffrey Beene Foundation Alzheimer’s Initiative. I let my experiences with Harvey drive my proposal; what I had done out of love over the years supported my professional insights. Harvey and I were a two-person clinical study. There were lessons here that gave me confidence as I wrote. Our life together helped legitimize and strengthen my voice as an advocate.

  Despite this, nagging self-doubt still haunted me. How could I take on one more responsibility in addition to Harvey and my mother? My care team worked because I was always available to assist. Taking on the creation of a foundation might upset the balance that I had spent years achieving. Out of necessity, my personal agenda was to sock away what I earned to make up for more than a decade out of work, and to replenish the savings I had raided from my own account to subsidize Harvey’s care. But I knew I could not leave home or work traditional hours.

  The solution was to set up a virtual office relying on a freelance assistant or consultants if a project needed it. I gave myself five years to make things happen. Then the money would be gone, and I would be out of a job.

  I wrote a wish list for a dream team board on a Post-it and stuck it to my computer. Top picks on my eclectic list for their entrepreneurial, scientific and philanthropic boldness were George Vradenburg and William Haseltine, noted Harvard professor and AIDS scientist. I wanted Hutton to be assured that the new foundation was in seasoned hands. Sometimes I wondered how, from just one meeting, Hutton could be so sure about me. Maybe he was banking on the set of priorities that permits someone to care for another person with such a debilitating disease for such a long time. I never pressed him for a reason. But was this lifeline real, and would my proposal be accepted?

  Harvey was my silent confidant as I wrote and rewrote. Sometimes I read passages out loud to him. I kept my computer perched on his feeding table so I could monitor his breathing, noticing restlessness or signs of pain. The nursing equipment that now filled the room cast ominous shadows on the walls and across the bed where Harvey lay sleeping.

  Every so often, I took a break from my writing and sat staring sadly at Harvey in the bed we shared. By the time Harvey was diagnosed, it was too late for medications to manage his symptoms. I felt the public conversation needed to be about earlier diagnosis. Research should focus on finding drugs to treat people before signs of neurodegeneration appeared, in order to slow and stave off the worst aspects of the disease for as long as possible. To put it simply—our brainspan should match our lifespan.

  A focus on earlier diagnosis could help drive recruitment for prevention trials. I wanted the proposal to reflect what I felt when I watched in horror Harvey’s descent into dementia: the recognition that we are all stakeholders when it comes to Alzheimer’s disease, and we are all at risk.

  If Harvey hadn’t been in denial, we could have planned better financially on how to care for him. He could have written down his express wishes on how much care he wanted and when to stop.

  At two o’clock in the morning with the deadline in sight, I knew I had to finally let go. Hutton’s invitation to move back into the world of the possible rather than disappearing with my husband into illness had sealed my personal commitment—whether he accepted the proposal or not.

  I pressed the send button from my Gmail
account. It flashed back “Message has been sent.” I had no idea whether my ideas would be accepted. There was nothing left to do but wait. But I had learned long ago how to exist in limbo, caught between hopelessness and hope.

  ELEVEN

  OUTLASTING THE BRAIN

  My handsome, glossy black business cards, with the “Geoffrey Beene Gives Back®” logo in the center, bore the title “President and CEO.” On the back were business addresses in Washington and New York. But the reality of my new job was very different. I operated solo out of a home office off my upstairs bedroom. There was no secretary. When tasks needed to get done, I did them. The arrangement allowed me to always be on call for emergencies downstairs with Harvey or my mother.

  Even so, it was a relief to refocus my energies. For the Foundation, I had deliberately shied away from a mission of care support or self-help. For one thing, there were well-funded nonprofits who had taken the lead on those issues.

  I believed that, given the sheer number of my generation likely to be diagnosed in the future with Alzheimer’s disease, the Foundation could make the biggest difference by focusing on early diagnosis and prevention. Even as I respected the importance of care research, I was intent on trying to help save the next generation.

  My hard-won expertise had come from years of trial and error fueled by a determination to battle each stage of Harvey’s disease as the fight of our lives. Caregivers deserved to be validated and empowered, not forgotten. In truth, I could be an advocate on both fronts.

  I knew how caregivers become the second victim; we just wear out. Early in the course of Harvey’s disease, I had a painful bout of shingles. The doctor said that stress, lack of sleep, and the intense physical nature of my care for Harvey made it harder for my immune system to cope with illness. The bout of shingles was a warning sign; when it came to health issues, Harvey wasn’t the only one at risk. Twelve years into Harvey’s disease, I suddenly realized that it had been a decade since I had gone in for a physical checkup of any kind, including a pap smear, mammogram, or colonoscopy. Medical appointments, like everything else, had gone by the wayside.