Slow Dancing with a Stranger (11 page)

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 echoed 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.

I showed up on day three because it was my rotation and found Harvey sleeping in another woman's bed as she sat stupefied in the chair. I joked to the nurse, “She can have him if she wants him,” as I led him back to his room. Nothing had really changed, except Harvey seemed to grow more unreachable day by day.

During the long rides back and forth to Copper Ridge, I had time to think and reflect, and I found myself doubting some of the decisions I had made.

In the seemingly endless search for a diagnosis, I used to take Harvey to the gym. I pushed him physically with rigorous routines on the indoor track and the weight machines. At each and every station, I demonstrated the routine, helped him get seated, and then assisted because he forgot what to do in midair on each repetition. I was determined to preserve muscle memory so he would not have to be confined to a wheelchair. But now, in hindsight, I realize that what I did was make him physically stronger even as his mind deteriorated. My best intentions had resulted in a situation where Harvey was feared for his strength and vice-like grip, fueled by adrenaline and aggravated by confusion.

We lucked out that 2002 was a mild winter, and soon the 90-minute round trip to Copper Ridge seemed routine. I went home each night to sleep in my bed and not in a chair or on an air mattress on the floor of Harvey's room.

Years later, long after Harvey had left Copper Ridge, the empathetic head nurse, Carol Palmer, told me that she did not think the constant calls from the private nurses had been a good idea. They kept me mired in the tiniest details of Harvey's daily life. I never got a break. Some things, she chided, aren't necessary to know. But I didn't get the chance to explain why this dynamic worked. I treated my nurses like extended family, expressing as much concern for their well-being as I did for Harvey. I knew better than anyone that caring for Harvey was a difficult job. They were encouraged to express their frustrations and feelings. I never asked them to do something for Harvey that they hadn't seen me do personally. These shared experiences held us together through the most disheartening moments that came all too often as tests of our endurance.

It was too late to go back and undo my decisions so I refused to dwell on them. For now, I needed to find a way to compartmentalize my pain. I did not get a chance to dwell too long on it anyway. I was always chasing Harvey.

Unlike amnesia, in which a person does not remember anything, Harvey suffered from agnosia, where he couldn't recognize familiar objects and faces. One moment he knew you, the next time he didn't. Aphasia added to his frustration and outbursts because he was unable to find words or understand them. This meant that the nurses and I were forced to anticipate or guess what Harvey wanted or needed.

The Copper Ridge medical team conceded that there was nothing typical about Harvey's case. None of the usual therapies seemed to work for his aggressive temperament and severe dementia. Even when his foot got badly infected and so swollen that he shouldn't have been able to get around, he walked through the pain. I found myself nervously holding my breath each time I walked into the ward, and only breathed normally when I started the drive back home.

Throughout Harvey's illness, each doctor told me that, although the course of the disease was impossible to predict, typically the downward decline of an early-onset patient is precipitous. They speculated that Harvey was not likely to survive a long time, giving him roughly five to eight years to live. As a consequence, most of the personal decisions I made turned out to be based on a prognosis that was very wrong.

After his stint in the hospital, I had just assumed that Medicare would continue to cover his care. I was so wrong. Medicare covered acute episodes but paid nothing for long-term, chronic care. I had budgeted for full-time private-duty nurses, doctor visits, diapers, medication, and even special medical equipment because the Medicare-issued portable commode and wheelchair didn't fit a man Harvey's size. When I opened the bill for the first month at Copper Ridge, the total for the care and the private nurses came to $15,000. It didn't take too much to do the math. My bill for his out-of-pocket care would run $180,000 annually. Here we were two adults in our prime and both out of work due to circumstances beyond our control. The fees to keep Harvey at a facility I trusted were simply beyond our financial means.

The situation reminded me of a similar financial predicament twenty years earlier, when my younger brother overdosed on prescription meds at college. I will never forget being rebuffed at admissions to Sheppard Pratt, a private psychiatric facility outside of Baltimore. They required a $10,000 down payment to admit him. It was money neither my mother nor I had. We had already wiped out our family savings caring for my father who lingered for twelve years mentally diminished from self-induced carbon monoxide poisoning.

When we walked out of the building, the ambulance with my brother came up the winding driveway. I instructed the driver to follow me and drove to the closest emergency room. Eight hours later, I signed my brother out of the hospital, laid him in the back of my gray Nissan van, and took him home with me. In the end, my repeated rescue efforts over the next four years failed. Long after his death, I often wondered if the outcome would have been different had we had the money. Now when I thought about Harvey's situation, the same questions haunted me.