On Einstein’s birthday and on the day of Stephen Hawking’s death, I found myself driving into a black hole of our healthcare system, a nursing home, to visit my old friend Paul Scharf. Paul was the next door neighbor when I first moved onto Park Place in downtown Princeton. His mother had died when he was very young. When I moved into the neighborhood Paul was in his late 30s and clearly emotionally disabled in some way. He was living with his father, a retired electrician.
The father would attempt to involve his son in any number of menial tasks around the house. Invariably Paul would find a way to screw it up. “You nincompoop,” the father would mutter, before taking the task over himself. When the father left Paul home alone for more than a few hours Paul would come to one of the neighboring houses and asked to be let in. His heart pounding, Paul would ask to be taken in. “Do you think my father’s going to come back?” he would ask.
When Paul’s father died in 1984, Paul did not collapse as we in the neighborhood thought he would. Instead he actually got a little better. He continued to live in the house, and took in a housemate — a person who like himself took part in the Saturday night “Hub” program at the nearby Methodist Church.
For a while he worked as shopping cart attendant at the supermarket. He also helped unload newspapers at U.S. 1’s office on Roszel Road. Through it all Paul had but one burning goal: He never wanted to live in a group home. He said it over and over.
Eventually Paul’s ability to care for himself diminished. I tried everything to assist him, even hiring cleaning people to help keep his place in order. Soon the options boiled down to one: a group home. I got help from Adult Protective Services, part of the state’s Department of Human Services. I told the social worker that a group home was the one thing in his life that Paul wanted to avoid at all costs. He would probably have to be dragged there, and then locked in for some time to keep from escaping.
The social worker, Renee Swain, interviewed Paul, and then told me the outcome. “He’s going to a group home and he’s going to love it.” She came by one morning, picked him up, and drove him over to a group home in Hightstown. She called me later in the afternoon. “He’s there and he loves it.”
He really did. My family and I visited a few times — he had pretty much elected himself mayor of the facility. After a few years Paul was transferred to another facility, farther away. A year or so ago, mostly confined to a wheelchair and with his health visibly failing, Paul was transferred to King Manor Care & Rehabilitation Center in Neptune, an hour’s drive from Princeton.
By now all the other friends and family in Paul’s orbit were either dead or out of touch. Paul would call me once a week. We always began with a discussion about how much the call meant, that we would talk 15 to 20 minutes, that he would like me to take him out to lunch, to which I would reply that going out to lunch was a great idea but impractical until he began walking again, that he was pretty sure he would be able to walk soon, and that we would talk again in another week, for 15 to 20 minutes. The call usually ended after about seven or eight minutes.
I took the family out to visit Paul on Christmas Day, 2016. The kids performed a little trumpet-trombone Christmas medley for the patients and staff. I visited Paul again last summer. He pleaded with me to take him out to lunch — he had been there several years and never had ventured outside the facility. As much as he would have liked it, he still wasn’t ready to go out to lunch.
Through all this I would get periodic calls from the nursing staff. Paul cut himself and we are prescribing an antibiotic. Are you OK with that? The first few times I said sure, whatever. Eventually I got wary, and went out of my way to announce that I was not — and would not be — Paul’s guardian. Practicing telemedicine — especially from a distance of 40 miles — was not on my to-do list.
Was I sure about that? A social worker at the nursing home pressed the matter with me last summer. She understood why I didn’t want the responsibility but she asked me to consider the consequence. With no family or friends to represent him, Paul would be in the care of the state. If Paul slipped into an unsustainable physical condition, the state would use extraordinary means to sustain him — the last thing the state wants is to let a person die naturally, and then have a long-lost relative come in and demand to know why more wasn’t done to save him.
Late last year Paul, now 75 years old, sounded as if he was losing his voice when he called. The calls then stopped altogether, and I eventually got a call from a representative of some state agency. Was I Paul’s guardian? No, I was only a neighbor. He was calling, he said, because Paul had had a tracheotomy, was intubated, and was unable to talk. I told him to keep me informed. We had reached that exact position — sustaining an unsustainable life — that the social worker had hoped to avoid.
After that I heard nothing. At one point I called the hospital to which he had been transferred, and asked about his condition. He was intubated, the nurse on duty said. Would it help to have a visitor? Not really, was the response, he probably wouldn’t even know you were there.
I never heard another word. I figured Paul was dead.
Then I got a call from Karen Sesto of the Office of the Public Guardian for the Elderly. Paul was indeed intubated, and unable to talk, but he was conscious and, Sesto thought, he would appreciate a visit from anyone who could show him that he was not alone. Sesto asked a few questions: Did he have any family? Where were his parents buried? Did he have any religious affiliation?
I answered as best as I could and then set aside Wednesday, March 14, for the trip to that black hole. In Stephen Hawking’s world, a visitor to a black hole of the universe would be eaten up and spit out as a lifeless form of energy. Driving up Route 206 north to I-287 to the exit for Wayne, New Jersey, is a hellish drive in the real world, with traffic on 287 inexplicably tortuous above and below I-80.
Finally I reached the Lakeview Rehabilitation & Care Center, more than 90 minutes away from Paul’s last permanent residence in Princeton. After several years in a triple occupancy room at King Manor, Paul now enjoyed a room of his own at Lakeview. Enjoyed might not be the right word. I entered and saw a lifeless form on the far bed, a clear plastic, corrugated tube coming out of his throat. Thinner tubes fed water, nutrients, and an antibiotic into various points in his arm.
Paul’s body was bloated, but he was neither lifeless nor comatose. When I got his attention his eyes flashed in recognition. I held his hand and asked him to give me a squeeze if he could hear. No response. I asked if could shake his head up and down to signify a yes. He didn’t move. But when I showed him a photo of his childhood home on my cell phone his eyes opened wide, and he struggled to talk.
Struggled and struggled and struggled without an audible trace of success. I imagined that if he could talk he would probably talk about the same subjects that were the substance of our many phone calls. As he struggled I filled in with small talk:
Everyone back in Princeton says hello to you, Paul. I’ll come back again. When I get back to Princeton I’ll tell everyone that you were asking about them.
Paul struggled to reply. From the movement of his lips I couldn’t discern a single word. This, I thought, must be how someone struggles when they are drowning. Paul struggled so hard that his lower lip began to bleed. No sounds came out.
Disabilities, dying, death. They are all great equalizers. On the way back to Princeton, I thought about the frustration of not being able to communicate with another human being. Albert Einstein, may have experienced it himself, as he lay on his death bed at the Princeton Medical Center. The last words he uttered were in German. The look on the face of the only person in the room, nurse Alberta Roszel (now living in a senior care community in central New Jersey), must have been one of bewilderment. She couldn’t speak a word of German.
For Stephen Hawking, the pivotal moment came in 1985. Already largely debilitated by ALS, he came down with pneumonia. Doctors asked his wife if she wanted his life support turned off. She said no, a breathing tube was inserted, and he carried on, but with no ability to speak. Eventually scientists devised a system that enabled Hawking to communicate by means of an infrared beam, activated by the blinking of his eye or the twitching of his cheek. A speech synthesizer enabled him to speak about 15 words a minute.
The day before he celebrated his 76th birthday, on January 7 of this year, Hawking talked about depression at a lecture at the Royal Institute in London. “Black holes ain’t as black as they are painted. They are not the eternal prisons they were once thought. Things can get out of a black hole both on the outside and possibly to another universe. So if you feel you are in a black hole, don’t give up — there’s a way out.”
That’s a nice message for you and me, but probably too much for a guy like Paul. For all his physical challenges in the black hole of the nursing home 60-plus miles from home, Paul must also be deeply discouraged. It’s not a happy message.
But that’s not the message I promised to bring back with me. Did I tell you yet? I just visited with Paul. He was asking about you.