The Good Doctor (30 page)

The last few weeks at the Mount Sinai were bittersweet. Several departments held farewell receptions in my father’s honor and he received many good-bye notes. But he still felt very guilty about leaving. Luckily, my dad’s associate, Cindy Gustaferro, joined a group of physicians who would cover the infectious diseases consultations at the hospital. On July 1, 1998, my father began what he called a “summer interlude,” planning to assume his position at University Hospital in the fall.

When people asked my father whether he had left the Mount Sinai, he had a quick retort: “No, the Mount Sinai left me.”

CHAPTER NINE

Slowing Down

Why was it taking my father so long to do everything? The two people who most studiously avoided answering this question were the two doctors: my father and me. Physicians are known for being the worst patients, and my father was no exception, attributing his symptoms to vertigo and problems with his balance. For my part, I did not want to know what I knew. As there were no treatments for early Parkinson’s disease, what was the point of finding out?

But for anyone paying attention, it was pretty obvious that there was something wrong. My nonphysician wife, Cathy, for example, had good-naturedly nicknamed her father-in-law Slow-Motion Man. At the medical school, my dad had begun to give his lectures while sitting down. And, although the mental issues emerged after the physical problems, he was not as sharp as he once had been. Finally, in 2001, several years after his symptoms started, my father went to a neurologist and received a formal diagnosis of Parkinson’s.

So imagine my surprise in 2004 when my dad casually mentioned that he was finishing up an article for the prestigious
New England Journal of Medicine
, the journal that had published his famous endocarditis series in 1966. It so happened that I was completing a piece for the
New England Journal
at the same time and was working with the same editor. She was surprised—and pleased—to learn that we were father and son.

But that was my father’s last hurrah in the world of medicine. As most Parkinson’s patients do, he went into a steady decline. By 2007, he had stopped going to the hospital and medical school entirely, and then he gradually became homebound. In 2011, when he was seventy-nine, my mother finally had to put him in a nursing home, one that was affiliated with the facility of which he had been medical director over thirty years before.

My father was becoming the exact sort of patient who had once raised within him such concern and pity. Although I did so reluctantly, I gradually took charge of aspects of his medical care—just as he had done for my grandmothers. There was really no other choice. I was his son and a doctor. But what to do—and not do—for him could not have been more complicated.

Before his health deteriorated, my father spent some quality time at University Hospital. He was “not practicing medicine at the moment,” he wrote in November 1999, but had “a professional address and identity.” He taught medical students, residents, and fellows at the bedside and regularly attended conferences in the areas of infectious diseases and internal medicine. The hospital was always in need of excellent teachers, and his fellow faculty members loved having him around. My father was enormously appreciative of this opportunity and very fond of his colleagues, although he found his new institution to be “vast and impersonal” in contrast to the Mount Sinai.

He also became a bit of a gadfly at Case Western University School of Medicine’s Department of Bioethics, attending its events and arranging for me to give an occasional symposium when I was visiting Cleveland. The faculty welcomed his involvement, although I had the sense that he used his medical degree to pull rank, foisting his impassioned beliefs about medical futility and other ethical issues on his new colleagues.

But medical reality was beginning to take over my father’s life. When he finally saw the neurologist, he reported being unsteady and having difficulty getting out of low chairs. Buttoning his shirt was becoming hard. In addition, his voice had grown much softer, a condition known as hypophonia. There were occasional tremors—involuntary movements of his arms. The neurologist confirmed these symptoms and found my father to be rigid with a stiff gait. “There are definite signs of parkinsonism,” the doctor wrote. A second neurologist concurred: “We are most likely dealing with Parkinson’s disease.”

So how long had my dad been sick? His journals provide a clue. Almost three years earlier, on Wednesday, July 1, 1998, he penned an entry that became increasingly tiny and hard to decipher as he wrote. Micrographia—small writing—is another distinctive sign of Parkinson’s.

His next note commented on the previous one. “The last note is
incredibly
sloppy and almost illegible,” he wrote. “I wonder why?”

Even after receiving his diagnosis, my father could do very little about it. Generally, neurologists begin medications for Parkinson’s only after patients’ symptoms become debilitating, and my dad was still functioning pretty well. This is, of course, one of the reasons he had delayed obtaining a formal medical evaluation. In addition, my father was dealing with another medical problem, prostate cancer, which was discovered in May 2001 and treated by my sister’s husband, Richard Stock, with a radium-seed implant in November of that year. Rich had actually thought that aggressive treatment was not necessary, but my dad had stubbornly insisted—another example of the perils of caring for a family member.

Once my father was formally diagnosed with Parkinson’s, everyone knew what was coming. It was just a question of how rapidly the disease would progress and whether it would also affect his cognition. This inevitable decline is a major reason that my father’s fellow infectious diseases physicians in Cleveland decided to honor him. Happily, they did so in a way that actually mattered to a man who cared little for awards. In early 2002, they formally named the citywide infectious diseases conference, which my dad had modeled on the conferences he had attended in Boston, after him. At one of these conferences, my father’s junior colleague Robert Bonomo presented five cases, each one concerning an infection on which my father had published a landmark paper. It is hard to imagine better tributes to a colleague and mentor.

By the summer of 2002, my father’s symptoms had worsened. “This is by way of announcing the momentous moment I first took medication for my PD,” his July 31 journal entry read. Then, after almost falling on an escalator in January 2003, he added a second type of pill. In October of that year, he also went on Sinemet, the most common Parkinson’s medication but one that neurologists avoid using until it is absolutely necessary. By early 2004, he was going into University Hospital less frequently due to a fear of falling. Eventually, my mother had to drive him there. Not surprisingly, my dad had to give up teaching in the infectious diseases committee—now called Mechanisms of Infection—for Case Western Reserve’s second-year medical students. He had been the driving force for this teaching effort for at least twenty-five years.

Most worrisome were signs of mental slippage. As early as 1997, my mother had thought her husband was forgetting little things. Five years later, he confided in his journals that “I’m having trouble spelling certain common words.” Soon thereafter, he reported a common side effect of Parkinson’s medications: “hallucinations—visual—of a rather startling nature.”

Then, in an entry dated January 29, 2004, my father wrote, “I’m even giving serious thoughts to writing one more medical paper.” Had I read this note at that time, I would surely have been skeptical. After all, my dad’s antibiotic manifesto was more than fifteen years overdue. He had not published a paper in eight years and, frankly, did not seem sharp enough to publish another one.

Yet somehow he pulled it off. And the story he chose to tell, in the August 5, 2004, issue of the
New England Journal of Medicine
, could not have been more fitting. It was about Leo Loewe, a physician at Brooklyn’s Jewish Hospital who in 1942 had discovered that very high doses of the new wonder drug penicillin could cure previously untreatable alpha-hemolytic streptococcal endocarditis. But because it was wartime and there were shortages of penicillin, the US government had ordered that any available drug be sent for use in the military. Loewe, however, managed to forge a connection with a high-ranking executive at Pfizer, which was manufacturing the drug, even inviting the man to meet the endocarditis patients his company’s drug had cured. As a result, the Pfizer executive quietly siphoned off penicillin and sent it to Loewe, enabling him to cure seven additional patients.

My father’s essay was a sort of epitaph for his own career. In response to a letter sent to the
New England Journal
about his article, he admiringly termed Loewe a “desperate physician, eager to explore any avenue for his ill patient.” For my father, there was no other way to practice medicine. But it was another example of changing ethical standards. These days, any sort of deception, even if done for the benefit of a patient, is frowned upon. And if sick patients were to learn that some of them were being deprived of a potentially helpful medication while others received it, they would loudly assert their rights. My dad appreciated these contradictions, admitting that “Loewe’s heroics would not be possible today.”

Even though my father stopped seeing his own patients after 1998, he still remained the unofficial physician for family and friends, as in the cases of Jessie and Gertie. This activity, something he called his “continental consulting service” in an April 2004 journal entry, persisted even after his Parkinson’s was quite advanced. And I recall continuing to ask my father questions about complicated infectious diseases cases that I encountered. But as time went on and he realized that his advice might not be accurate, he was more likely to give inquiring relatives the names of other physicians that they might contact for formal second opinions. Still, my dad’s expertise was so legendary that certain acquaintances, such as my parents’ beloved next-door neighbors, continued to trust his judgment long after he shouldn’t have been giving any opinions at all.

One of the most poignant aspects of my father’s journals is how his growing difficulty in writing reflected the progression of his Parkinson’s disease. By early 2000, less than two years after he had remarked on his sloppy note, his writing was routinely tiny, although, to his credit, still largely readable. On several occasions, he began notes by stating that he was going to make an extra effort to write in large print despite his micrographia. Inevitably, the size of the print shrank as the note progressed. It was a sad reminder of what a devastating disease he had. The notes continued into 2007, but they became increasingly short and unfocused.

My father’s swan song came at my son’s bar mitzvah, in February 2006. Phil was quite unsteady by this point and not traveling much at all. But getting to New York to share his grandson’s big day was something he did not want to miss. When it was time for him to do an aliyah, a prayer uttered before and after a Torah reading, it seemed as if he would have to do it from his seat. But then my dad stood up and, with a shuffle, climbed the two steps to the platform, unsteadily but unassisted. On the return trip, he half raised his arms like Rocky, as if to say,
I did it!
On a day on which I recalled my own bar mitzvah and thought of all the relatives that I so dearly loved and missed, his presence—and his tenuous journey to stand next to his grandson—was profoundly moving.

Over the years, perhaps due to nostalgia, my father had become a little more receptive to Jewish rituals, including an occasional fast on Yom Kippur. And his love for family events and celebrations, even of a religious nature, remained strong. Although religion still meant little to him, his Jewishness was a constant. Ben’s bar mitzvah, he wrote afterward in large print and capital letters, was “JOYFUL AND MEMORABLE.” But by the time of my daughter Nina’s bat mitzvah, in May 2008, he was too sick to travel, and my mother came by herself.

What followed was, as is routinely the case with Parkinson’s disease, a slow but steady deterioration. For a couple of years, although my father was largely housebound, he could still walk up and down the stairs and, with great effort, go out to eat at a local restaurant. The situation was extraordinarily draining for my mother. Thanks largely to the spouses of people with Alzheimer’s disease, the emotional travails of being a full-time caretaker have finally gotten proper attention. Parkinson’s, although more a physical than a mental deterioration, raises the same issues of burnout. My mom, having just devoted years of her life to caring for her mother, now transferred her efforts to my father. As she was reluctant to allocate tasks to others, her burden was especially intense.

Eventually, however, she had to hire outside and then live-in help. By this point, it was quite clear that the Parkinson’s was severely affecting my father’s mental status as well, another common development. Although he could remember the name of the surgeon who had evaluated my grandfather Mannie’s abdomen in 1975, my father did not recall that he had once been the medical director of the Montefiore Home. The visual hallucinations had gotten worse, requiring additional medications that made him groggy and caused him to speak a disquieting mix of fact and fiction. When my dad could no longer navigate the stairs, he was confined to the second floor of the house. It was a terrible state of affairs. In conjunction with my father’s neurologist and me, my mother tinkered with his medications, but there was no real solution.

Right around Thanksgiving in 2011, a crisis occurred. The caregiver who was living at our house was away and my mother had broken her wrist. It was simply too much to keep my father at home. The time had come to send him to Menorah Park, a top-notch local nursing home. My sister and I flew to Cleveland to help with the transition. In retrospect, my mother had kept my dad at home far longer than anybody had thought she should. She felt bad about the transition, but my father did not. At this point, he was too confused to care where he was living.