Slow Dancing with a Stranger (18 page)

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.

M
y 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.

My friends Trish and George made periodic visits to the Mayo Clinic for comprehensive physical exams. This time I joined them.

At Mayo, after informing the physician who screened all incoming patients that I was taking care of two dementia patients at home, I was sent to see a psychiatrist without requesting the meeting. I will never forget our discussion.

“Aren't you afraid you'll wear out?” the doctor asked me.

I told him I didn't let myself think about that possibility. Then I turned the question back on him.

“Will I wear out?” I asked. He had no answer.

He asked me if I had hobbies or a way to relax, and I told him that I did not. There was no time to pursue hobbies, cultivate special interests, or even relax by reading a good book.

The doctor likened my constant vigilance to a form of post–traumatic stress disorder. I was always on alert, and over time the toll from lack of sleep and hypervigilance would surely lead to health consequences. He urged me to find someone to cover the night shift. I told him I couldn't afford the expense.

Later, I took a cardio-stress test and X-rays of my shoulders, which constantly ached. My left shoulder was freezing up, making it harder and harder to lift Harvey. The doctor suggested shoulder surgery, but I did not have time. Today, the pain in my shoulders is even more intense, and I still keep saying that I will take care of the problem some other time.

My new position gave me the opportunity to walk out the front door. I threw myself into work, always looking to find a creative and fresh approach to promote both the cause and the philanthropy. My periodic overnight trips to New York for meetings with researchers, strategy sessions surrounding public awareness campaigns, and conferences on Alzheimer's disease were rewarding but also solitary. Several attempts to dine out alone at a sidewalk café right off Fifth Avenue and Fifty-Fourth Street, while watching the pickup scene, felt more uncomfortable than fun.

I never tried to make plans when in the city. I was just too tired to be social. Besides, I much preferred to spend my time on the fortieth floor in an expansive corner apartment, with a view of Central Park to the north, and directly down on the spires of Saint Patrick's Cathedral at Fifty-First and Fifth Avenue.

The place belonged to Trish and George who encouraged me to stay there on my infrequent visits. It was a gesture so personal and special that each time I unlocked the door, it felt like a gift. I nicknamed it Heaven. The quiet was welcomed; I felt safe. At night I left the blinds open on the floor-to-ceiling windows so I could awake to an impressionist sunrise over the skyscrapers. The light cast a warm glow on the parquet floors and across the library couch where I slept. There was a foldout bed in the library, but I never bothered to open it up. Instead, I just curled up at the very edge with a duvet and pillow, always on the verge of falling off. Later, I realized that I slept the same way in that exquisite New York apartment that I did when I was home taking care of Harvey. It was hard to live differently, even when I was away from home.

The way I survived professionally and personally was to consciously compartmentalize my work and what happened at home.

One of my early public service campaigns for the Geoffrey Beene Foundation, called “Rock Stars of Science
^™
,” treated top researchers like celebrities and paired them with icons in the music world. It was a salute designed to excite young people to consider careers in science. My pro bono pitch to the stars was that they didn't need to own the pain of a disease; they were standing next to the “Hope.” Pulling that project together took me back in time, to when I produced live shows and worked against tight deadlines. The scientists' schedules were even more complicated than those of the rock stars.

Five weeks after Geoffrey Beene's “Rock Stars of Science
^™
” ran in
GQ
magazine, the chairs of the congressional biomedical research caucus invited us to Capitol Hill because we embraced all major diseases. In less than eight weeks, I pulled together a three-hour congressional briefing and live concert.

Researchers turned up to testify about the lack of funding for basic research and the impact on the field of Alzheimer's. There were updates on cancer and HIV/AIDS, but the most magical moment of the day came when Rudy Tanzi (a top Alzheimer's gene hunter), Joe Perry of Aerosmith, and the director of the National Institutes of Health (Francis Collins) got up and jammed together.

At one point, Collins played the guitar and sang Bob Dylan's classic hit “The Times They Are A-Changin'.” When Collins got to the line “Come senators, congressmen, please heed the call,” with Joe Perry and Rudy Tanzi backing him up, the audience roared and the energy in the room was palpable. I stood on the side watching it all, not believing that my vision to honor researchers had brought this scene to life. For a moment, even after all I had been through and the reality of the harshness of the disease, I believed something could change.

But at the end of the day, after the researchers had gone back to their labs and the politicians back to their offices, I stood alone on stage at the U.S. Capitol Visitor Center.

There are always moments, as a caregiver and an advocate, when I wonder if what I do makes a difference. At home, Harvey couldn't tell me. In advocacy, one is never sure until years later that a project succeeded in opening a dialogue or changing people's thinking. As glorious as the day had been, the current stillness and emptiness in the room reminded me of life with Alzheimer's. Someone had to remove the signs and take responsibility for the final cleanup. Soon, I would head home too. The memories of the day were mine to keep, at least for now. But there would be no chance to celebrate or share what went on that day, unless I was content to talk to myself.

Things were getting worse at home. Three times in the past five
years, Harvey's doctor had referred him for hospice care based on an assumption that he wasn't going to live longer than six months. I braced myself for the end and made funeral arrangements.

Unlike hospice care for patients with end-stage cancer, where the end-of-life trajectory is somewhat understood, Alzheimer's taunts patients and families in the end stage of disease. The more likely scenario is that the patient suffers a traumatic episode, perhaps a stroke or severe seizures. This dramatic diminishment is often followed by a plateau period; the Alzheimer's patient sinks deeper into the disease without getting progressively worse.

This kept happening to Harvey. Each time, the doctor ordered hospice care at home, predicting that Harvey would not live longer than six months. Each time, Harvey's health would painfully disintegrate and then stabilize. The nurse practitioner came to the house every two weeks to reevaluate him. She couldn't get someone like Harvey on a scale to measure weight loss, so she measured “active dying” by the circumference of his arms. Two times, we were dropped from the list.

At home, it increasingly felt like we lived in suspended animation. The truth was that Harvey had been sick so long that I had forgotten what he was like before Alzheimer's disease. Sometimes I took out old photo albums to remind myself of good times together, but Harvey's personality was no longer the same. He had none.

As the years went by, it got harder to recall who he had once been. I changed his diapers. I cleaned up his accidents. I dealt with his childlike behavior and unexplained outbursts. Somewhere along the way—even now I am not exactly sure when—my husband disappeared. I have slept by his side all these years to reassure him that he is safe at home. I kiss him at night and snuggle in close, like we used to do. If his eyes flicker open briefly—something that is quite rare now—I try to get directly in his line of sight. I know that it is unlikely he can still connect the image with the voice. I have no way of knowing what he takes in, but I do it anyway, just in case.

Each time the hospice nurse came to visit, I asked for a copy of her notes. I wanted to share Harvey's prognosis with his doctor, but I struggled to understand it myself. Harvey had confounded the experts at every turn. I never knew if this time would be different.

One of the most recent reports reminded me of the challenges of his case. Harvey was now seventy-seven years old and had lived with Alzheimer's disease for close to twenty years. The nurse practitioner wrote that she never expected him to live this long. For the past two years, he had been unable to hold up his head, had serious difficulty swallowing even when we massaged his throat, experienced seizures, and had a bluish coloring to his skin.

“He is so well cared for,” the nurse concluded in her report, “that his body is outlasting his brain.”

Harvey now spent most of his days in a specialized wheelchair, his chin to his chest, drooling, with his eyes closed. He never made eye contact, and he hadn't spoken for over seven years. He was losing weight because, despite our best efforts, we couldn't always get him to swallow his food. No one could tell me how much longer the situation might continue. Every time I asked, the nurse repeated the same line: Harvey's prognosis was that he would live less than six months.

I kept an emergency kit tucked in the refrigerator in the event
that Harvey's seizures could not be controlled or he showed obvious signs of pain. The contents included medicine to relieve anxiety, atropine drops to dry out secretions, acetaminophen suppositories for when he could no longer take medications by mouth—even when crushed in homemade applesauce—and senna for his bowels.

There was one other bottle with a pearly salmon-pink liquid that I hid elsewhere. It contained morphine, and we all knew that it required a hospice nurse's orders. The drug was to be used only to manage extreme pain when all else failed. One evening, close to midnight, Harvey was more restless than usual. His face was contorted, and he made strange, piercing sounds—trapped moans from deep within that tormented me as I stroked his forehead.

I tried everything I knew to settle him down, but nothing worked. I called the hospice to ask for help. The on-call night nurse instructed me on how to administer the morphine by mouth and use Ativan as a booster to speed up its effect. If he did not calm down in the next thirty minutes, she told me, I would need to repeat the dosing.

I felt an overwhelming fatigue sweep over me after I administered the first dose. I lay on the bed next to Harvey, trying to comfort him by tracing circles with my index finger right at the base of his neck. Nothing was working. The nurse called to check on us thirty minutes later. She told me I needed to give him another dose. His breathing was shallow. Resting my head on my chest, I obsessed over his every moan. Harvey's face had always been a road map for us, letting us know if he was suffering even when he could no longer speak. Now his face offered no information about what might come next. I kept listening for a heartbeat.

Lying there, my thoughts drifted to an encounter I had had a few years earlier after giving a speech at a conference in Boston. This was part of my new life and job representing the Geoffrey Beene Foundation Alzheimer's Initiative. I shared not only a vision for the future of Alzheimer's research but also parts of my story, so the audience could understand why I felt it was so important to develop tools to identify high-risk people before they manifested symptoms of Alzheimer's disease. It wasn't easy sharing something so deeply personal. Often, after I talked, people in the audience came up to me with their own tales.