Slow Dancing with a Stranger Page 5

  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 wa
tch 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.

  As the months wore on, things got worse. Whatever mind-ravaging illness he had, it now turned him unpredictably violent. I was instructed by doctors to be cautious and call 911 if he got too violent. Harvey was six foot two and 185 pounds; I was fearful all the time.

  The biggest problem was that it was almost impossible to anticipate an outburst. He often came up to me from behind, catching me unaware as I cooked dinner or was doing some household chore. I never knew if he was going to try to hug me or choke me. When I noticed that he seemed agitated, I tried to keep a safe distance. I would quietly leave the room and wait a few moments, then walk back in with a “Hi love, anything you need?” or “You asked me to find your keys and here they are,” hoping that his anger would have subsided or he would have forgotten what was upsetting him. In a fit of desperation, I installed oversized concave mirrors on the walls between the kitchen and family room, our bedroom, bathroom, and adjoining home office. The mirrors were designed to let me see around blind corners, allowing me to monitor him from another room. If he seemed angry or agitated, I had a few moments to decide whether to confront him.

  This was the bleakest period yet. I felt trapped in my own home. Then my world opened up a bit with the birth of my first grandchild, a precious baby girl named Hope. She was doll-like, less than six pounds with perfect little features. I watched Jason through the glass window, hovering over her in intensive care. It was a disquieting scene because it reminded me how helpless and how dependent we are on doctors for answers. All the while, Harvey was regressing. Even though I have a photo of the two of us holding Hope in the hospital room, Harvey never knew Hope or any of his five grandchildren. I quickly realized it was too difficult to take Harvey with me when I wanted to see Hope, Eli, and Benjamin. I paid a nurse to stay extra hours while I drove to my son’s house to help care for and play with my grandchildren. It lifted my spirits to see how each of them responded to me as their “Nana.” The unconditional love and energy I poured into them came back in very direct and honest ways. They were my antidepressant of choice; the only joy in my life, filling me with hope where there was none.

  At home with Harvey, I worked harder and harder, but the person I loved was disappearing bit by bit mentally and physically right before my eyes.

  At our visit to Hopkins, Dr. Rabins had warned me that over time, as Harvey’s symptoms got worse, the efficacy of the medication he had prescribed would likely diminish. At some point, the dosage levels might need to be adjusted. It didn’t take long before this happened, but I kept quietly trying to manage the situation alone through phone consults. The doctor had already increased the antidepressant when I began having trouble coaxing Harvey to get up in the morning. Even with the increased dose, I often had to wake him by saying, “Dr. Gralnick, your patients are waiting. They need you.” Though that seems cruel, it was truly the only way to get his cooperation. By the time he was dressed, he had already forgotten the ruse.

  I frantically looked for options to tame his symptoms. I played New Age music at night and used aromatherapy; I pumped up his favorite rock ’n’ roll from the 1970s so loud he could hear it anywhere in the house. Nothing seemed to help. There were also signs of physical deterioration. I noticed that Harvey had difficulty negotiating the steps up to the second-floor bedroom. He was fearful and timid, sometimes taking nearly fifteen minutes to mount a flight of stairs. Was it a depth perception issue? Would a new prescription for eyeglasses help? I took him to see the doctor, but the eye exam was inconclusive.

  Time weighed heavily for both of us. I checked off each month like a scorecard and test of my own resilience. Another two years passed.

  It was clear that Harvey was slowly and progressively getting worse. If anything, his anxieties seemed more pronounced despite the medications. He shadowed me around the house, refusing to leave my side. Sweating profusely, he continuously paced the family room or kitchen. It got harder to stay out of his way. I tried to come up with strategies to protect myself but usually had no time to prepare. Harvey’s anger came from someplace out of my reach. It was like a sudden summer storm, his face quickly turning menacing. Often he grabbed my wrist in a crushing grip. Unable to pull free and fearing he might break my arm, I would deliberately move closer to him. I kept my head and chin down so he couldn’t get at my throat with his other hand. Then I would hug him with my free arm and say as calmly as the rising fear would allow, “You are a great doctor. You help people, not hurt them. I know you are frustrated, but I am the one who helps you.” I kept on talking until something in my conversation or tone distracted him enough to make him loosen his grip.

  Other times, if he grabbed both my wrists, effectively pinning me in place, I would break down in tears, hoping to bewilder or confuse him enough that he would let me go and walk out of the room. But I realized we could not go on like this; if the situation continued or deteriorated even further, I could end up getting seriously hurt.

  I spoke again with Dr. Rabins who felt it was time for another round of testing. He recommended that Harvey be brought to the hospital and placed under observation to adjust his medication and look for a better diagnosis than dementia. I was reluctant, knowing that Harvey felt safe at home and unsure how he would behave in a strange environment. But at this point, I felt I had no choice. Things were already bad, and there was nothing I could do to comfort him. Harvey’s latest symptoms were adding up to a disturbing prognosis. I started to make the necessary arrangements.

  I was desperate for a formal diagnosis even as Harvey was oblivious.

  I will never forget the morning we checked into Johns Hopkins Hospital on Meyer 6, a lockdown floor reserved for patients with complicated neuropsychological conditions that cannot be managed elsewhere. As we prepared for what was expected to be a short hospital visit, Harvey was more anxious than normal. I dressed him like a gentleman right down to his best cologne, so the nurses would treat him with respect. Even if they didn’t know who he was, they would be able to tell that he was someone of stature, even if he now had trouble getting dressed and kept repeating himself.

  Hospital check-in wasn’t until 12:30 P.M., so we found seats in the cafeteria, but neither of us could eat. We walked around the outdoor garden before going upstairs. Harvey was very quiet and held my hand like a child. I kept talking, reassuring him that we were going to see if we could adjust his medicines so he would feel better.

  “Then can I go back to work?” he asked. Even after everything that had happened, Harvey was fixated on recapturing the life he once had. I would have done anything to help him get it back.

  “Of course, love, that’s why we’re here. The doctors will run some tests and soon things will be just the way they were,” I told him.

  My reassuring words contradicted the sight that greeted us when the elevator door opened. We stepped into a small, beige chamber with a heavy locked metal door and reinforced wired glass windows. The nurses’ voices sounded disembodied as they spoke to us through an intercom and buzzed us in. I kept telling myself that Harvey was scheduled for only three to four days of testing and medication adjustment. If it helped him, a few days in this place was worth it.

  We were led to a drab double room just down the hall with sad beige walls and a bathroom devoid of sharp instruments to prevent the patients from wounding themselves. I wasn’t sure how Harvey would adjust to a stranger in the room, but there were no private singles available. The nurse assu
red me that no one was scheduled in, so he would be alone.

  Harvey was tired from being up so much of the night before, so he lay down on the bed as I quickly unpacked. I had brought along an old radio to keep him company, since Harvey couldn’t work a CD player anymore, and turned it to a channel that played his favorite classical music. If he woke up in the middle of the night and was disoriented, I hoped he would hear the music and relate it to the comfort of home.

  Just then, a senior resident entered the room and apologized for not shaking my hand. “Spreads germs, you know. Our mission here is to make certain the patients’ best interests come first.”

  The doctor then turned to Harvey, who sat docilely at the edge of the bed. “You’ve come to the right place,” he told Harvey. “No one can figure out what is wrong with you, Dr. Gralnick.”

  “That’s because nothing is wrong with me and I just want to get back to work. Let’s get this over quick,” retorted Harvey.

  Nothing in this hospital felt familiar except that sudden flash of Harvey’s flickering personality. For a brief moment, he almost sounded like his old self. I wondered if I should take him home. The only thing that stopped me was the realization that, even if I did, it would only be a matter of time before we had to return.

  FOUR

  OUT OF REACH

  It was 6:00 A.M. the next day. I had promised Harvey that I would be at the hospital when he woke up, even if it was unlikely he would remember.

  There was no one at the nursing station when I arrived, and the cleaning crew paid no attention when, against rules, I slipped into Harvey’s room. There he was, sitting slumped on the edge of the bed staring strangely past me. His eyes were glazed. His words came out garbled and slurred. It was clear to me that he had been drugged.