Slow Dancing with a Stranger (6 page)

That day I had an important meeting, but halfway downtown, I got a frantic call from Olga. Harvey had pushed her aside when she tried to block his exit at the front door. He was already a good distance up the street and headed for Cedar Lane, a rigorous three-mile trek to the NIH. A long-distance runner, Harvey could move fast, but he was carrying two heavy briefcases and wearing slip-on loafers. I knew because I had helped him dress before I left for work. I turned the car around, backtracking to cut him off before he came to any harm.

A return trip that should have taken fifteen minutes took only ten, as I raced through side streets and cut through alleys, like a flashback to my adrenaline-driven reporter days when I raced to be first on a crime scene. Turning off Wisconsin Avenue past the NIH complex onto Cedar Lane with no Harvey in sight, I made a U-turn and headed in the direction of the Clinical Center, where Harvey used to see his patients. The route was devoid of pedestrians. What about Rock Creek Park, which intersected Cedar and where we ran on weekends? I had just driven under the overpass before Beach Drive when I noticed in the distance a solitary figure propped awkwardly against a tree. As I approached, I saw it was Harvey. Next to him stood like sentinels the two briefcases filled with research he would never finish.

I pulled onto the gravel strip and jumped out of the car. “Hi, love,” I said to him, trying to feign a nonchalance I did not feel. “Need a ride home?” Harvey did not look surprised to see me there in the middle of the park. He merely looked up and said he had spent the morning at the NIH Library doing research and thought he would walk home for lunch. It was only 10:30, and I knew that he had never made it there, but I said nothing. He did not inquire why I wasn't at work.

We sat together for a few minutes while I debated how to cajole him to come home with me. Fortunately, Harvey began to get hungry since he had refused breakfast. I reached out to pick up one of his briefcases but the anger in his eyes made me recoil. I felt stung by his unspoken admonition that he did not need my help. He asked about his car again and why he couldn't drive himself to the office. I told him it was in the shop so we'd have to commute together, but the only place he was going that day was home. Even after we arrived back at the house, I remained terribly shaken by the turn of events. I called work and canceled the rest of my meetings for the day.

With Harvey now home all day, I tried hard to keep things as
normal as possible. It was maddening, but I just quietly played along as if it were the first time I had heard, “When can I go back to work?” “Where's my car?” “How come you are in my house?” “Do I know you?”

The most pressing issue was figuring out what was going wrong with Harvey. I wasn't sure how to explain my current home situation at work. Under new leadership, the broadcasting division had been decimated, our ranks stripped away, the studio emptied, and jobs reassigned. Any request for time off would be viewed critically. There was no way to manage Harvey at home without devising a better plan. My accrued vacation time combined with sick leave would give me six weeks to try to pin down a diagnosis. I needed to be careful not to jeopardize my position at work. Right now, my job was our sole source of income.

At first, I tried to engage Harvey in the quest for information about his symptoms, but that once-brilliant mind could no longer remember the most basic tasks. He began needing prompts on how to button his shirt and reminders to bathe and to brush his teeth. There were days when he engaged in endless repetition and others when he said nothing at all. It was hard to decide which I disliked more. But if you asked him directly how he was, he answered that he was fine.

We only had a short time before my leave would end, so I pressed to have Harvey seen by a prominent neurologist and physician at Johns Hopkins. The wait was six months. I wrote a letter to the then president, citing my husband's contributions in the research community and requesting an urgent second opinion. Perhaps Johns Hopkins, one of the leading research hospitals, could help me solve the mystery of Harvey's symptoms.

Two weeks later, armed with his test results, MRI scan, and my typed observations, we entered the outpatient assessment center in Baltimore. To protect Harvey's privacy, instead of using his real name, I wrote in the name of his favorite '82 Bordeaux, a reminder of better days. For the next week he was known as Peter Petrus.

Still, even at this top-ranked medical institution, they did not immediately suspect Alzheimer's disease, even after reviewing the diagnosis and charts from the Bethesda Naval Center. Back then, formal diagnosis for Alzheimer's came only with autopsy. It would be a drawn-out process of elimination.

On one trip to Hopkins, we were directed to the office of Dr. Peter Rabins, whose book,
The 36-Hour Day,
had become the bible for Alzheimer's caregivers. Dr. Rabins interviewed us separately and then together. It was the first time I felt a clinician listened to me; the first time one had asked how I was holding up. Rabins sent Harvey for further psychological tests—more endless hours in monochromatic waiting rooms and exam rooms that felt like holding pens for the anxious families.

Although Rabins didn't use the word
Alzheimer's,
when he wrote out a prescription, it was for an antidepressant and Aricept, one of only four drugs available to temporarily moderate the symptoms of dementia. Despite the mounting signs, the doctors still didn't feel they could conclusively diagnose Alzheimer's disease. Harvey's medical condition remained undiagnosed, debated, and unresolved for the next two years.

Between doctor visits, I spent hours trying to put Harvey's papers in order. Harvey had always been a very private person. I searched to no avail for some kind of advance directive so I could execute his last wishes. It had been on our to-do list after we gave each other power of attorney in the event of illness early in our marriage. I also uncovered evidence that Harvey had been having issues since before I had even first suspected. I found three years of signed tax returns that had never been filed stuffed under a dusty pile of research papers on the credenza behind his desk. There were also unfiled patent papers for monoclonal antibodies, research papers left half finished, unpaid parking tickets, an unused certificate for a weekend racing school that we had given him one Father's Day, boxes of old cancer slides, and safe deposit keys that opened doors I knew not where.

Why hadn't I pushed him harder to share important documents and keep information up to date? I turned my anger inward; there was nowhere else to direct it. I had so wanted to believe Harvey when he said that he wanted to take care of me. I was trusting, and it was now coming back to haunt me. How could I have missed his lack of concern, especially about matters that pertained to both of us?

In the evenings, between Harvey's waking hours and the nightmares that made it impossible for him to sleep through the night, I tried to read up on diseases of the brain, searching for ways to try to preserve his motor function. I closely tracked Harvey's behaviors, sleep patterns, and outbursts, looking for a pattern or a clue—something that might offer me a way to help him.

I knew that once I went back to work, it would be harder to find time for the kinds of exercises the books discussed: stretching and calisthenics to strengthen gait and eye-hand coordination, verbal games involving repetition of phrases and words in a desperate effort to salvage language and skill sets that he was already losing. I started to wonder, “My God, what if he forgets my name?”

My combined leave and vacation time ran out with no diagnosis to show for it. Now I had to go back to work caught between two uncertain worlds and distracted daily by Harvey's growing dependence and unpredictability. By then, Olga and I had devised a routine. She distracted Harvey when I left for the office. I coached her to pretend to be his research assistant, and told her that she could drive him anywhere he wanted to go except for the NIH campus.

During the day at work, I made sure that Harvey and I spoke every hour and sometimes more than once. He needed me to reassure him that I would be home shortly. The frequent and insistent calls were distracting. Every time I sat down to work on a project or concentrate on some task, the phone would ring, a jarring reminder that even here there was no escape from what was happening at home. I switched my hours so I could get home earlier, arriving at work at 7:00
A
.
M
. and leaving at 4:00
P
.
M
., then spending the remainder of the day caring for Harvey. I worked hard to hide my exhaustion, giving myself an extra twenty minutes to meticulously apply makeup—my mask to the world.

Once home, I walked with Harvey for up to six miles to help alleviate the confusion known as sundowning, when patients with memory issues are most likely to become agitated. I drove him almost every day to the tennis courts near our house. Hoping to help him maintain eye-hand coordination, we hit the ball back and forth in a monotonous rhythm. Still physically agile enough to get to the ball, we would volley, only stopping when Harvey tired or he couldn't focus.

At night, we washed up together in a shower built for two, which we had installed thinking about romance but appreciated now for its practicality. I locked the door to our bedroom, leaving the light on so he could see we were safe, but he still had trouble sleeping, and that meant I was up too—cajoling, comforting, and cradling him when he said he saw snakes crawling on the walls or heard strange voices. His medications were adjusted, but the anxieties remained. I tried ruses to assure him we were safe—screaming at the moonlight that cast shadows through the shades, catching the illusive creatures of the night in pillowcases that I had previously filled with toy rubber vermin—all to persuade Harvey that he could go back to sleep. In this way, night and day often ran together. Soon, weeks and then months slipped by without me noticing. I felt like I lived in a perpetual haze.

I remember him lying in our bed one night early on and furtively staring at me. Then he challenged me on why I was in his bedroom. I quickly pulled a dictating recorder out of my side table, used for sleepless nights when my mind wouldn't turn off, to record the conversation. He didn't recognize me as his wife even when I showed him photos of us together. But it was also the first and last time he ever acknowledged my sacrifice. “If you are in fact my wife,” he said, “then what's happening is very unfair to you.” I was hoping for more guidance.

What should I do? Divorce him? I loved him and felt committed to our promise to care for one another in either good or bad times.

Put him away in a facility and get on with my life? The regulations back then allowed nursing homes to advertise dementia units without any specific training for their workers, specialized activities, or safety measures in place. Harvey deserved better.

Send him to live with his son in California? Their relationship worked because they were apart except for an occasional phone call, and I quickly dismissed the idea.

Assist him to end it all because without his intellect he was no longer himself? This felt immoral to me and I knew it was something I could never do. For someone like Harvey, hanging around wasted and dependent would be more abhorrent than death. When he was cogent, before the disease took hold of his mind, he had said those exact words but left no written directives.

Harvey's denial about his own descent into disease would be his undoing and my own.

Trips outside the house, even for minor errands or grocery shopping, were fraught with unexpected complications. Harvey's social filters were unraveling and, along with them, his inhibitions and sense of appropriateness. If he had to urinate, this once distinguished man picked the nearest bush, a stack of newspapers at the pharmacy, or the wheel of the car next to ours in the shopping mall. I couldn't easily interrupt him, so I did my best to block the view or remind him to use the bathroom before we walked out the door. I always carried a fresh change of clothes for him. Excursions became more and more limited. Even at home, I sometimes unexpectedly found urine in waste cans, drawers, and as irrigation for houseplants.

As much as possible, I still tried to take Harvey out, hoping that seeing friends might stimulate his fading memory. I exhausted myself bathing, shaving, and dressing him, and then hurriedly dressed myself for the occasional evening out. If we kept moving at a cocktail party, I figured no one would suspect the truth. But by the end of those evenings, I often wondered if the effort and dissembling was worth it. Harvey couldn't tell me where we'd just been or whom we'd seen, even if they were our close friends.

Most people have a bucket list of things to do before they die; mine is a “never again” list. On work assignments that required a night away from home, I had no choice but to take him with me. One particular report was on board a cruise ship docked in Fort Lauderdale. There was no live news feed, so I thought I could manage him. On a docked ship, I figured there were only so many places for Harvey to get lost. I purchased an identification tag and bracelet at the mall and put them on him, but Harvey had never liked wearing anything but a watch, so I was afraid he would take it off. As an additional precaution, I sewed name tags in his clothing, as you would for a child headed for camp. I even taped a strip inside both shoes with information on how to contact me if he got lost.

I hired someone to watch him while I filmed, but almost immediately, Harvey slipped away. Fearing that something bad might have happened, I told the camera crew to shoot the scene without me while I frantically searched the ship. Harvey eventually was discovered at the bar drinking wine and comparing notes with the ship's sommelier. He had already downed several glasses, so I hurried him back to the stateroom, where he promptly passed out. I called the crew and told them to wrap. I grabbed a pillow off the bed and slept on the floor, propped against the door to make certain Harvey didn't disappear again. We disembarked early the next morning.