AFTER DEATH, WHAT?

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This is not a philosophical question, or a religious one. It’s a question about what happens to the person sitting by a hospital bedside when the occupant of the bed, someone who was loved and cherished, becomes (suddenly or at last) “the deceased,” dies perhaps even while the sun is still shining brightly through the clean hospital windows, mocking the dark ache in the heart of the solitary survivor.

In the hospital where Bill died early in May, a four-year-old state-of-the-art hospital in upscale Princeton, New Jersey — home of a world-renowned university, of the Institute for Advanced Studies (where Albert Einstein found safe harbor after fleeing anti-Semitism in Europe during World War II), and of Westminister Choir College, whose graduates grace stages in many celebrated opera houses – in this spiffy new hospital, the person blinded by tears who holds the still-warm hand of a new cadaver simply ceases to exist.

A nurse’s aide came to wheel away the equipment that had sustained Bill’s life for the past seven days. I began to gather up my things, thinking they were about to clear the room. “You can stay for half an hour or so,” she said matter-of-factly as she left. “They won’t take him away and remake the bed before that.” People continued to walk back and forth in the hall. I had to get up to close the door.

Not that I had counted for much in the hospital before that, except as a conduit for conveying important information about Bill. In fact, “you can stay for half an hour or so” was one of only five things anyone there said to me the day Bill died. Earlier, Bill’s fourth pulmonologist had come by to report he wasn’t getting better and what did we want to do next, whereupon I told her Bill’s son and I agreed we should let him go. She nodded and said, “I wish more families were as wise as you.” And that was that. She just left. I never again saw or heard from her, although it was me who had accompanied Bill on every outpatient appointment with her and asked at least half the questions. It was also me who had brought him to her office in a wheelchair just before she checked him into the hospital because he was so weak and sick. She knew me. I had thought she was nice. But of course I wasn’t her patient. Her role as a physician ended with Bill’s death. She had no obligation to me, not even a human one. Not even to say she was so sorry.

Somewhat later, another pulmonologist came in. I had seen him briefly just once before, because he was one of four in practice together who took turns doing the hospital rounds for pulmonology cases, so that each was there only every fourth day and you never really got to know any one of them. (Maybe that’s how they keep from becoming too emotionally invested in a patient.) “You’d better notify a funeral director to come get the body afterwards,” he said. “We can only keep it overnight.” As if Bill were a left-behind package needing removal.

After they pulled out the intubation tubes and — still unconscious — Bill was rapidly slipping away, an intensive care nurse came to check that dying was proceeding properly and reprimanded me for looking at the monitor to see his oxygen level. “Don’t look there. Look at his face,” she scolded. (While I still could?) She turned off the monitor. So it was me who first noticed he had died. I held my hand against his cracked and slightly open lips but no faint breath came out. She brought in the pulmonologist who had advised calling a funeral director. He held Bill’s inert wrist for a moment, looked at the clock, and said — not to me, but to the nurse, who was taking notes — “Time of death 2:52 p.m.”

When he, the nurse, the nurse’s aide, and the equipment were gone, I called the funeral director and made arrangements to come to his office next day to pay him for what he was about to do and give him the requisite information for the death certificate. Then I kissed the forehead of the body in the bed that wasn’t Bill any more and stumbled out of the room into the hall and towards the elevator. It was a long hall. I had trouble maintaining my balance. The resident who had seen me every day for the past seven days was at the floor reception desk as I passed him. I gave him a slight nod, but not a flicker of recognition crossed his face. He might have been staring into space. I also crossed paths with the two day nurses and one of the four pulmonologists who had looked after Bill during the seven days he spent in their care. All three looked right through me.

One person noticed how erratically I was walking. It was the respiratory technician, a woman called Antonia who appeared to be in her late fifties; she had been in Bill’s room every day during the last three days of his life to adjust the respirator keeping him alive. Our eyes met, she came towards me and held out her arms. It was a big hug. My eyes began to fill again. “Will you be all right driving home?” she asked, still hugging. I nodded, because it was too hard to speak. “Be careful,” she said. “God bless.”

Of course I wasn’t all right driving home. My hands and arms shook so much I could hardly keep the wheel from going out of control as I tried to make the winding turns out of the hospital complex and back onto Route 1 South. Two other drivers gave me long and frightening honks, as if it were thanks only to them I myself had narrowly escaped being killed.

Resigning myself to the fact of Bill’s death is still very hard. But what particularly festered on the day he died, and does to a certain extent even now, is that his doctors and nurses made it so very clear they didn’t care at all about what I might be feeling. Maybe where there’s so much pain and suffering for their patients, they can’t permit themselves the humanity to be even momentarily concerned with those who survive the patients. Or maybe my experience was unique. Maybe at other hospitals it’s different. I don’t know. All I can say is that nearly three months later, I don’t remember the names of any of the four pulmonologists or the intensive care nurses. I’ll remember Antonia with gratitude for a very long time.

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BEREAVEMENT ASSIGNMENT

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I’m not generally a group person. I have belonged to book groups over the years, where I invariably tend to talk a lot.  As a rule, however, I’m more comfortable meeting people one on one, rather than being one of many sitting around a conference table.

That said, Bill (in helpful mode to the end) noted from his hospital bed that I might find it comforting to join what he called a “grief group” after he was gone.  Dutifully, despite my lack of enthusiasm for groups, I found two, terming themselves “bereavement” groups.  The first, which cost $50 for six weekly sessions and by happenstance had only women participants, is over now and was not, for me, particularly helpful, other than being a place to go when I needed very much to get out of the house.  The second, also running for six weeks but free, has another two meetings scheduled and is more interesting, possibly because there are a couple of men in it who speak of their bereavement in somewhat different terms than the women in both groups have tended to do, but possibly also because the leader/coordinator is a much better counselor.

For this second, still ongoing, group there was an assignment this week: I was to write myself a letter from Bill in which he addresses what he valued and appreciated about me during the time he was facing his illness and death with such bravery, and then to reflect  on what difference this letter might make for me in my life currently. I was also cautioned not to stress about it or put myself under any pressure, and to remember there is no right or wrong.

Stress? Pressure? Me? This “assignment” was like waving catnip at a pussycat. Thirty minutes later I had sent it off, thinking, as I clicked “attach file,” that it might also make a pretty good sequel to the last piece I posted here several weeks ago. So for those of you who are wondering how I’m doing, here’s how I’m doing, as of now:

Bereavement-Group Assignment, July 26, 2016

I wrote many letters for Bill during the years we lived together – business letters and also letters to his grown children, the latter based on what he wanted to say to them but typed all lower case so as to look as if he were the one at the computer and not me.  The fact is Bill not only couldn’t really type, but also couldn’t write worth a damn (which he cheerfully acknowledged), and couldn’t spell very well either, although he had a huge vocabulary and was an easy and charming conversationalist.  It’s a wonder he got through medical school, and in French, too. (His medical degree was from the University of Geneva, in the days when very few Jewish boys were accepted by American medical schools.) So it seems extremely unlikely he would have written me a letter when he was dying.  If he had, it would have looked like the messages on the birthday cards, Valentine’s Day cards, Mother’s Day cards, and cards that came with flowers for no reason at all just because he felt like bringing flowers home that day: “For my beautifull wonderfull Nina. All my love, Bill.”

But he did tell me what he might have put in a last letter, had he thought to write it.  He told me on the evening of May 3, the last night before intubation and three days before he died; it was the last night he could still speak, although through the bi-pap mask.  I wrote it down as soon as I got home, so I would never forget it.  This is what he said:

            “It breaks my heart to see you so sad.”

             “You were the best thing that ever happened to me.”

              “You’re one in a million.”

               “I love you so much.”

                “You are wonderful and beautiful. You’re intelligent, and funny and sexy.”

                 “You’re so kind.”

                 “We had fifteen wonderful years together.”

                 “It’s all right to cry.”

                 “I hate to leave you. But I don’t want to live on a machine.”

                 “I know everything will be okay.  You’re strong, and you’ll be fine.”

 Does rereading this change anything about my days without Bill?  It doesn’t make them less painful. If anything, it reopens the raw wound of his having disappeared from my life.  I feel it’s better for me not to dwell on what is gone and irreplaceable, but just to go on putting one foot in front of the other and trust that, as he said, eventually “everything will be okay.” Maybe not “fine.” Certainly not “wonderful.”  But okay. After all, he was “one in a million,” too.

When I was somewhat younger, I used to think what you had to do in life was find the “right” person and become secure in your relationship together, and that would be the end of the story, that particular search story, anyway. I now feel nothing in life is secure, and that it’s all a journey each of us takes by ourself, with good times (if we’re lucky) that we don’t entirely appreciate while we’re passing through them, but also times after the good times that are not so good, because at bottom we remain profoundly alone, even where there are other (similarly lonely) people to keep us company at the movies.

 

 

MY DARLING BILL IS DEAD

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i.

He died at the University Medical Center of Princeton on May 6, 2016.

ii.

It was sudden, and not sudden. Although this blog has candidly addressed my thoughts and feelings as I enter late life, there have been significant and purposeful omissions. The biggest is that from its inception two and a half years ago, Bill and I both knew he had a fatal disease for which there was no hope of cure.

For a long time it was a theoretical knowledge, obscuring our horizon but not imposing much practical restriction on daily life.  Back in 2005, when we had been together only four years and still lived in Massachusetts, he felt unwell and checked himself into the ER of Mass. General.  It turned out he had been overdosing with vitamin D, which is unwise (as he should have known, being an M.D. himself).  In the course of the complete workup that hospitals are wont to do when addressing a systemic complaint, a perceived crackle in the lungs led to a scan, which led to a hospital pulmonologist showing up at his bedside to announce bluntly that, by the way, he had idiopathic pulmonary fibrosis and the average life expectancy for that disease was three years.

“Idiopathic” meant, in his case, no known cause.  Fibrotic scarring of the delicate lung tissue can be generated by continued exposure to and/or inhalation of strong irritants, after which it continues even where there is no further exposure. Bill had never worked in an environment polluted with noxious substances, never smoked, never lived in a heavily trafficked inner city.  He was a psychiatrist who sat in a chair in a comfortable and well ventilated suburban office for most of his working life and listened to unhappy people talk about their problems. “Why him?” is another of life’s unanswerable questions.

Moreover, the diagnosis was inadvertent.  If he had not gone to the hospital because of the excess Vitamin D, the fibrosis would not have been discovered until one or both of the two symptoms of this hopeless disease manifested themselves: continued coughing and/or shortness of breath.  Bill was symptom-free in 2005 and remained so for eight more years. That said, it’s not a diagnosis one can forget. He took a copy of the scan with us when we moved to Princeton and began a rigorous program of what he hoped would be proactive “alternative” treatment for lung issues.

These I will not describe, other than to remark that for the rest of our time together half our freezer and refrigerator were given over to expensive, time-dated and time-consuming antioxidant substances to inhale or swallow, and that one of our two linen closets contained enough supplements to open a store, plus boxes of bottled remedies to ward off any incipient cold that might develop from a sneeze or a sore throat, because even a cold could turn into a bronchitis or a pneumonia that his compromised lungs might not be able to handle.

iii.

The threat of death by suffocation was not all Bill confronted by the time he was 83 or 84. But although several of his other medical conditions were extremely painful, they were not fatal, and all but one tended to be cyclical, so there were periods of relief.  He was brave, patient, not particularly complaining, and appreciative of everything he felt life still had to offer.  However, these other ailments distracted me, so that I didn’t note with precision when the coughing began.  Looking back without notes, I place it in the fall of 2013 — two and a half years ago, which was when I began to blog.  (I don’t think there was a connection, but I must say that although he was never a demanding man, when doing all the chores around the house and tending to him began to consume much of my time, the blog was a great help to me; it could be written at home but also connected me to the world outside.)

The coughing was awful, and incessant, and utterly exhausting.  It sounded like a large dog barking non-stop.  If I had gone out to market or the drugstore, I could hear it coming from the front bedroom or living-room when I pulled into the driveway.  One or two of the neighbors inquired.  Not wanting to explain about the fibrosis, he said he was having a bad bronchitis.  Perhaps he thought that was true.  Somewhere he had picked up the idea that if the coughing was productive, as his was (meaning it produced phlegm), it was not a fibrosis symptom.  If so, he had been misinformed.  Even if productive, that kind of coughing is a sign of fibrosis.  In any event, he found a medication, Gabapentin, which suppressed the cough (although not the cause) and another year went by.  He could still climb the stairs in the condo without getting out of breath, and if he seemed to tire on short walks more quickly than before, that could be attributed to age. The last time we strolled the paths in Marquand Park together, in May 2014 (a visit memorialized in this blog with many photos of the trees he loved), he needed to rest on a bench halfway along.

iv.

At the end of 2014, the stairs became more difficult for him and we began the search for a pulmonologist to work with.  We did not revisit a second time the full-of-himself head honcho at Columbia Presbyterian in New York who had replied to Bill’s initial question, “How long do I have?” with a shrug and the curt, “Pick a number.”

In Princeton, the kindly fellow who ran the pulmonary rehabilitation lab at the University Medical Center where Bill would die a year and a half later told him he was off the bell curve for death from pulmonary fibrosis because he was still alive nine and a half years after diagnosis. That was cheering but also wrong. As we were told by the third pulmonologist, who took over when the kindly fellow retired, the clock begins to run from manifestation of symptoms, which is usually when the disease is diagnosed, and not from the time of an inadvertent diagnosis made when there were not yet symptoms.

Oxygen entered our house.  Medicare paid for a large concentrator with a fifty-foot cannula attached. (Easy to trip over.)  It stood at the foot of the stairs, so the cannula would reach Bill’s side of the bed in the master bedroom.  He didn’t need it for a while. He did need the seven-pound portable rechargeable oxygen concentrator that could be carried, with effort, in a shoulder bag or a backpack whenever he left the house or did anything requiring exertion. It had to be recharged every two hours or so, which meant we couldn’t stay out very long.  By now, I was doing all the driving anyway.

There was also Esbriet, an obscenely costly prescription medication the FDA had just approved; in Europe it had been shown to delay the development of the fibrosis somewhat if taken at maximum dose.  Bill was never able to achieve the maximum dose.  Even a two-thirds dose closed his esophagus so he couldn’t swallow, made him round-the-clock nauseous, and removed all his appetite, so that he lost significant weight — for him, always trim-to-slender, not a good thing. The third pulmonologist thought his problems with it might be age-related; younger patients seemed to tolerate it better. He recommended stopping it entirely or else trying an alternative and equally costly new drug, Ofev, that similarly slowed fibrosis development but had a different, although equally undesirable, side effect: constant and urgent diarrhea. Bill rejected the alternative without trial.

v.

At the beginning of 2016, a fourth pulmonologist arrived at the University Medical Center. She seemed empathetic and had a father with emphysema and his own oxygen concentrator at the foot of the stairs.  That may not have been the best of reasons to switch, but Bill wanted to feel comfortable with his doctor, which was probably as important as anything at this point. She put him on oxygen 24/7, which meant he began using the fifty-foot cannula day and night. Essentially, he was trapped in the house. It also rubbed sores on the tops of his ears. We had to put moleskin rectangles there.

The pulmonologist at Mass. General who had said the average life expectancy was three years did not offer detailed statistics.  50% of pulmonary fibrosis patients live five years from onset of symptoms; the other 50% don’t.  Since the coughing had not begun till the fall of 2013, I calculated that with some luck we might have another two or two and a half years together. Bill, tethered to his tubular lifeline, wanted to believe me but I think now probably realized it was not likely to happen.  He read books about the meaning of life, listened to Baroque music, watched nature videos, and slept more. We also held hands much of the time, even as we fell asleep.  I felt he was drifting into some space in his mind where I couldn’t follow, seeking to make peace with death.  Someone commented on this blog that the few and sporadic pieces I managed to post in 2016  were very dark.  Of course they were: It was just too hard to be lighthearted, even in a virtual world that wasn’t our real one.

vi.

Bill turned 88 on January 27.  After he died, I found in the recent Google history of his iPad the question, “What percent of people live to 88?”  Was he trying to comfort himself?  April 13 was our fifteenth anniversary but it was raining, so we postponed celebration.  A few days later, he made the effort to shower, shave and dress nicely; we went out to dinner at a local Italian restaurant. (He loved pasta to the end.)  I let him out at the door with his portable oxygen, parked, and walked back to join him.  Although neither of us knew it, it would be our last outing together.

Near the end of April, I came down with the worst flu I had had in forty years (despite our both having had the recommended flu and pneumonia shots the prior fall).  For four days, I could hardly get up in the morning.   Of course, he caught it from me.  Just as I was beginning to recover, he sank fast. He fell out of bed the following afternoon, so weak I couldn’t help him off the floor.  I had to call a neighbor and her teenage son; the three of us managed to hoist him onto the mattress. That night it happened again, at one in the morning.  This time I called the police. They sent an ambulance and the EMTs, as well as a young police officer.  The head EMT wanted to take him to the hospital, but Bill refused and signed a paper to that effect.  However, the following day, his fourth pulmonologist insisted I bring him in.  He had to rest several times between the door and the car. When we reached the hospital, I brought a wheelchair out and helped him and his portable oxygen into it, parked, and came back for him.  I had never pushed him in a wheelchair before and was picturing in my mind that I might be doing that from now on.  I still thought there would be a “now on.”

vii.

He arrived on a Friday. He died the following Friday.  A nasal swab indicated that what we both had had was a viral flu, which in his case had turned into viral pneumonia with a probable overlay of bacterial pneumonia.  For three days, while he remained relatively upbeat, they pumped him full of steroids, antibiotics, anti-viral medication and much more oxygen than the home concentrator could generate, but were unable to reverse the infection in his lungs. They then suggested a bi-pap mask, which would prevent him from eating.  They also explained that they couldn’t leave him on it long,  and the next step would be intubation (breathing on a respirator) followed, if that didn’t work, by a tracheotomy.  Bill adamantly rejected the idea of tracheotomy; he refused to live connected to tubes and machines.

At first he decided against intubation as well, knowing that if it didn’t assist him in beginning to breathe on his own, he would never come off it, meaning when they removed the tubes, he would die.  But then on Tuesday, he changed his mind. One of the hospital pulmonologists was encouraging intubation because with the extra time it could provide, the medication might eliminate the infection and he would have another two or three months of life. Eventually, he agreed.  “Let’s give it a shot,” he said.

viii.

I spent Tuesday night at the hospital.  We both knew it might be our last night together, because intubation involves so much morphine that he would be unconscious from then on.  But we had time to tell each other most of what we wanted to say.  When I couldn’t quite understand him through the bi-pap mask, he wrote in a little notebook I still have in my bag. I did most of the crying. He said he wasn’t afraid to die anymore, that slipping away under morphine was not a bad way to go, and that he was only sorry he was leaving me.  He also said many other things I shall treasure all my life, but they are not to share.

By Friday morning, it was clear that intubation was an exercise in futility; it was not helping him breathe on his own. The doctors asked if I wanted to continue. I called Bill’s son in California, with whom I had been in daily contact. He agreed we should let him go. I had asked the attending that day how long Bill might live when removed from the respirator.  He said a few hours, or even a day. They removed the tubes at 2:35 in the afternoon.  He was pronounced dead at 2:52.  I sat by his side, and held his hand, and watched the blood drain from his face.  Although the hand remained warm for a while, his face turned yellow.  Whatever was lying in the bed wasn’t Bill any more.  Bill was gone.