Slow Dancing with a Stranger Page 8

  Back at Kensington Park, Harvey’s behavior continued to be problematic. Now I was only permitted to walk the halls with him at night, when the patients were asleep in their rooms. Then, eight weeks after we first arrived, our stay at Kensington Park came to an abrupt end. During a music session, it was reported that Harvey approached a female resident and exposed himself. His caregiver reported that he did not pull out his genitals. It didn’t matter. We were told he could not leave his quarters and we had to vacate the premises.

  Two days later, we made our way through the empty halls and left before dawn. It was again an ordeal getting Harvey into the car, but there was no dementia guide for our perplexing re-entry home.

  We had lived in the same house for close to twenty years, but nothing was familiar to Harvey—not the pictures on the walls, the books on the shelves, or the furniture that we bought to decorate each room. It took three of us thirty minutes to cajole Harvey up two steps to the back door and an hour of trial and error to reach the second-floor landing. Each step was treated like a victory and cheered silently. Once there, we showered him and lead him into the softly lit master bedroom. Noise set him off so it was only my voice that guided his every move. I arranged a pile of decorative pillows into a barricade down the center of our king-size bed. If Harvey saw me sleeping next to him, I risked being attacked as a stranger. The bedside lamp stayed on. Trying to think ahead of his every move was exhausting. I hung a souvenir cowbell from Switzerland on our bedroom doorknob as a precaution in case he tried to sneak out in the middle of the night. We gave him some Ativan mixed in some homemade applesauce and finally he drifted off to sleep.

  For the next five days, we lived on the second floor because Harvey had become terrified of the steps. I had been worried he could not walk up the stairs but never planned for him being frightened by the descent. I used those days to reconfigure a small side-room library at the front of the house into a bedroom. I installed Smith and Hawkins iron garden gates instead of a child safety gate to control his movement and keep him away from the steps. I put the sofas and chairs in the family room on heavy rubber bed stilts to make it easier for us to help him to sit down.

  How to keep him clean confounded me: a sponge bath was not a solution. Then I remembered the small European bathrooms in the hotels when we traveled—nothing more than a toilet, a small sink with wall tile surrounds, and a drain in the floor so one could also shower. I called a contractor, who showed up the next day with two men to convert the small guest bathroom. The foreman told me the job would take at least two weeks, but after watching me coach Harvey slowly down fifteen stairs from a seated position, one step at a time, they finished in less than a week and presented me a bill for half the original quote. I never thought about how strange we must look to outsiders, but clearly these tough men couldn’t believe what they had seen.

  Life at home was now limited to the first floor. I priced out the installation of an elevator, but it was the cost of a year’s worth of care. The nurses and I worked together, always aware that Harvey could strike out without warning. I brought in an instructor for a session in self-defense and to demonstrate how to unlock Harvey’s vice-like grip. My personal survival regimen—a weekly weight-training session with a former pro athlete nicknamed Huggy, who pushed me to my physical max and pumped up my courage.

  I devised a daily record so we could track Harvey’s moods and behavior; whatever worked we repeated, and then shared techniques. He rarely spoke other than to curse, so we just kept up a cheerful one-way conversation with him while searching for some flicker of recognition or positive response. We prepared his favorite finger foods that he picked up and ate as he wandered the kitchen. Harvey could no longer verbalize his appreciation, so the quirkiest of behaviors became endearing. Any measure of cooperation coaxed out of him scored as a win. But we never let down our guard and maneuvered around him only with great caution.

  Winter approached, and soon the holidays were upon us. I threw a subdued party for the nurses, handing out gifts and awards to the team for their spirit and courage. All the while, in the middle of the room, Harvey circled. As his brain shut down, so did his vision. He lost much of his ability to speak. One of the only words he could still say was his name. Our twenty-third wedding anniversary and my birthday went by as forgotten, irrelevant dates.

  There was a deep emptiness in my life; sometimes I felt as if I didn’t exist. Then in late January 2002, I received a call that there was an opening at Copper Ridge. Was I interested?

  Despite everything I had endured, I was still ambivalent. What if it didn’t work? My previous experiences with Harvey in the locked ward at the hospital and at the nursing facility couldn’t simply be erased. I was hypervigilant, programmed to run interference for Harvey every step of the way. Turning off that intensity was impossible; I didn’t know how to behave differently. There was also no guarantee that the doctors at Copper Ridge would be any more successful at finding a drug to manage Harvey’s aggressiveness without dramatically diminishing what was left of his mental capacity. What was best for Harvey?

  There were also more practical considerations. Would Harvey’s nurses drive the hour each way to Copper Ridge? Was it a safe commute on back roads in bad weather? What if we were asked to leave Copper Ridge? Harvey’s behavior was getting progressively worse. His doctor and my son Jason weighed in again and left me no options.

  So five months later on February 4, 2002, we left the home we had shared for most of our marriage and set out for Copper Ridge. I closed the door behind me and refused to look back.

  SIX

  CHANGING LANDSCAPE

  The off-highway route to Copper Ridge passed scenic rolling hills and a countryside of red farms with bales of neatly cut hay stacked alongside. Winter parched the panorama, but the chill I felt came from within. Harvey had started drifting away from me emotionally long ago. Now the view out the window evoked the vastness of our imminent physical separation. Driving through this unfamiliar terrain, I felt unmoored. I felt like a failure, unable to rescue the man I loved. The road to Copper Ridge was a reminder of how dramatically the landscape of my own life had shifted. Everything looked different.

  My friends had argued relentlessly that I needed to seize this opportunity. At times, it felt like a Greek chorus, dressed in black and predicting doom; their discordant notes echoing in my head. To be fair, they often put into words what I sometimes thought to myself but never dared say out loud.

  “You’ve done all you can. You managed the nightmare and gave up your career.”

  “Put him somewhere safe and reclaim your life.”

  “No one deserves to be on call 24/7. It’s not too late to move forward.”

  “Get out while you can before it is too late.”

  I understood the arguments presented to bolster their case that Copper Ridge represented a safe haven, not only for Harvey, but for me. The stress and the intensity of care that Harvey required—trying to anticipate his every need and keep both him and his caregivers safe as his agitation and propensity to lash out grew—took an enormous toll on my physical and mental health. I could never relax.

  I often found myself sinking into a deep depression fueled by my growing sense of isolation. Even with nursing help, Harvey’s care consumed all my energies. When I did leave the house, it was time used to run errands or see my grandchildren. There was no allowance in our budget for respite care.

  The only time I was physically absent was for a monthly, eight-hour, same-day round-trip drive to check on my widowed mother. She was still feisty at eighty-four, but the problems with Harvey meant that I wasn’t spending as much time with her. She needed my attention.

  Recently, she had been in a minor fender bender, but when the police charged her for making a turn from the wrong lane she abruptly gave up driving. She no longer had any interest in walking the three blocks to the beach, even though watching the ocean had been her major source of comfort through the loss of both my brother and my
father.

  Even after she retired at age seventy-one, my mother had the exacting demeanor of a proud and independent woman. Always fastidious in her dress, she still looked as if she was headed off to teach class even when she was just doing chores around the house. Now she seldom dressed up unless she had a doctor’s appointment. She let her blond highlighted hair go completely white. Unread newspapers stacked up in piles. There were other signs she needed help. She loved to cook so I had bought her a freezer, but she started forgetting her recipes and letting food spoil.

  Over the years, her women friends had died off one by one. She had no energy to make new friends and refused hired help, even weekly grocery deliveries billed to my account. My mother made it clear she wanted only me.

  So twice a month, I left Harvey in the care of the aides and made the trip to my mother’s house to stock her refrigerator, clean the apartment, and take her out for an early Chinese dinner. Then it was right back on the road to reach home in time for my night shift. The entire time I was with her, I worried constantly about what might happen in my absence. She refused to wear a medical alert device to trigger the medics and declined my offer to recruit a college aide part-time. Visits to my mother came to resemble my trips with Harvey to the nursing facilities and the hospital; I never calmed down until I walked out the door.

  I didn’t always share what was going on. It was difficult to communicate the intensity of my predicament to friends out of fear of boring or losing them too. Each of them was dealing with their own personal brand of pain, so I listened instead and said nothing. Nevertheless, one of their honest queries gnawed at me in my darkest moments of self-doubt.

  “Under similar circumstances, would Harvey do the same? Give up everything to take care of you?”

  I never answered them, but I did turn that question over and over in my mind, especially as I drove to Copper Ridge. Harvey had never given up on his patients. I couldn’t shake the feeling that somehow, in bringing him to Copper Ridge, I was letting him down. The truth was somewhere in between. For the first time, I was being forced to start considering what might be best for both of us.

  Harvey had not been out with me in the car since we had brought him home four months earlier from the nursing home. He was agitated. I wanted to think it was just because he wanted to stay at home, but I knew better.

  There was no turning back the clock now. Harvey sat in the front seat because he refused to get in the backseat. Both nurses hovered directly behind him, but eventually we all relaxed. The movement of the car, the pastoral scenery, and Rimsky-Korsakov’s Scheherazade playing softly on the radio lulled him to sleep.

  Copper Ridge had a stellar reputation not only for its management of difficult cases, but also for the quality of their staff. A few weeks earlier, I had made the long drive alone to check it out myself. The staff-to-patient ratio was one to three, which allowed more engagement with residents. Unlike the aloof and revolving-door hires in other facilities, staff tenure there averaged five to twenty years. The way the staff handled patients was akin to old-fashioned country care. The corridors were twice the normal size, and the rooms were spacious. Residents freely moved around the halls many ambulating while seated in wheelchairs as protection from falling. The general population was elderly and docile. Aloud I wondered if Harvey would fit in and how long he might last. The admissions director then took me to visit the special unit. It was on a separate floor reserved for patients with the most ominous behavior issues of dementia care.

  The ward was noisy and frenetic, like a raucous scene, down to bizarrely dressed characters right out of an old Fellini movie. The behavior gave clues to which part of the brain was diseased. Patients with frontal lobe dementia screamed profanities. So did Harvey. Other residents were calm one moment and then something . . . anything . . . might set them off in an episode of rage. That was Harvey, too. Still others wandered while hallucinating, picked at the air, talked to themselves in the mirror as if with a friend, or put foreign objects in their mouths, mistaking them for food. And then there was the repetitive, plaintive cry from those who could still speak: “I want to go home. Get me out of here.”

  Right before my eyes were the same aberrations I dealt with on a daily basis. Moreover, I got to see the trajectory of the problems I was likely to confront next as the disease progressed. I could no longer view Harvey’s behaviors in a void. He was just a variation of them. The realization of what likely lay ahead stunned me, and I burst into tears of premonition.

  The admissions officer suggested we leave, but I pulled myself together to ask if there was a place where I could quietly sit and watch. We moved into a darkened side room with one-way glass. The aides worked calmly amid the chaos. The hard reality was that Copper Ridge offered the best skilled care for someone like Harvey, but I still worried. There was so much noise; shouting and screaming often set Harvey off. The option to accommodate us in the quiet dementia care ward required the added expense of private-duty day nurses that met state of Maryland certification requirements. Fortunately, both of Harvey’s regular nurses, Olga and Hla, were eligible. Copper Ridge also welcomed the presence of spouses, and I vowed to pitch in just as I always had. We would each work twelve-hour shifts on alternate days to ease the burden and long commute.

  It was early afternoon when we arrived. It might have been a new setting, but we acted out our familiar ritual of normalcy. We had dressed Harvey up in a sport jacket and crisp striped shirt to make an entrance befitting a new VIP guest in residence. He wore freshly polished loafers, the footwear of choice when you care for a man who might hit you in the head with his fist if you take too long to tie his shoes. I refused to put him in a sweat suit. I knew the dry-cleaning bill from his incontinence would be high, but it was important not just to me, but also to Hla and Olga that Harvey look like his trademark, polished self. They were the first to remind me when we were out of freshly laundered shirts or when Harvey needed more aftershave and cologne. They took pride knowing that they were caring for someone like Harvey, a preeminent scientist, a doctor who had spent a career trying to cure people of terrible diseases. It helped my nursing aides see the value in their work, which so often could be tedious, frightening, and filled with drudgery. They insisted on calling him “Dr. Harvey,” and they never dropped the honorific even as Harvey’s disease progressed and he could no longer say his own name.

  Driving to Copper Ridge, I overheard their conversation in the backseat. They were skeptical from the beginning that this new arrangement would work. As far as they were concerned, we were headed to a private medical retreat to have Dr. Harvey’s medications adjusted, and that soon we would be coming home again. Still, hoping for the best, I arranged to be billed for snacks from the visitors’ café to break up the monotony of institutional food, not just for Harvey but also for his nurses.

  Harvey’s room was on the inner court, two doors down from the nursing station. It missed the morning sun but was the only vacant room available. I had never unpacked when we came home from the last facility, so this move was complete, right down to the poster-size photo of us with Jason and his wife, Dana, at Harvey’s induction into the American College of Physicians. There we were smiling next to Harvey in his cap and gown, but he was already having problems and his eyes looked sadly vacant. Just ten minutes earlier that day, he was confused enough to have walked the wrong way on the stage. Fortunately, the inductees didn’t have to speak or I wouldn’t have risked it. This was his last hurrah and I was willing to test the odds that we could make it through the ceremony. I mounted the picture facing the bed so if he woke during the night it might give him comfort.

  I was always trying to imagine the world from Harvey’s perspective and leave him clues of the man he used to be.

  The room was not claustrophobic, but Harvey was becoming agitated so we opened the door. Off he went to explore the halls with the aides scurrying behind him. “Let’s keep him moving so we tire him out,” I started to say, but my words just ech
oed down the corridor as they disappeared from sight.

  I took the opportunity to negotiate with the head nurse to let me stay the first night, recounting my traumatic experience at the hospital. All she said was, “Please look at yourself in the mirror. You’re burned out. You really need to get some rest. If you don’t take care of yourself, how can you ever take care of him?” She gave me her personal number and that of the night nurse, with an invitation to call at any hour, night or day. We waited through dinner and cleaned him up for the night. The bell rang that visiting hours were over. By now I was used to one-way good-night kisses, but he surprised me with a kiss back. So I did it again and again, hoping for the same response. There was nothing.

  I drove the long way home, but despite my exhaustion, I couldn’t sleep. That night, I called the nursing station at midnight, then again at 3:00 A.M. Both times, they told me Harvey was up, quietly and aimlessly wandering the halls.

  For the first time, I was now physically removed from Harvey, but I got telephone calls with details of his condition multiple times every day from my nurses. Harvey was having trouble adjusting to his new quarters at Copper Ridge. Up most of the night, he slept much of the morning and was difficult to get up. Shower time required two nurses with him in a large tiled room with a drain in the center. They would literally hose him down at a safe distance with the door ajar in case they needed to call for backup. He couldn’t sit still for activities or physical therapy. The doctors had weaned him off his current medications to start anew. It was trial and error once more.