The worst moment was not the end of the vigil; the moment of my brother's death. That was a relief. My sister spoke for all of us just seconds after our brother passed. She said "I'm glad. No more pain." Frank had endured so much pain. Even the lovely card that the nurses sent us later spoke of the 'true suffering' they had witnessed. There was also what I knew; how Frank had made his peace with God while he still was able to do so. I was there with him when it happened. He asked me to help him, so I did. When the end finally came for him, I was able to tell him that it was okay to leave us and that he was going to a good place.
The worst moment came instead two nights before Frank died. It came while he was still reasonably coherent, in those rare moments when he was awake. It was January 17, 2011, a Monday night. We had made the decision to enlist the services of hospice. That had occurred on Sunday. It was Frank's wish that he be allowed to stay at the hospital instead of moving to hospice's facility a dozen or so blocks away. I can't speak for my family, but I was disappointed in his decision even though he made it for the right reasons. He loved the nursing staff on his floor, and they were indeed an amazing group of caregivers. That was why he chose to stay. But staying in the hospital meant not having immediate access to hospice staff. For Frank and also for me, this was to prove costly.
Throughout the day on Monday, Frank had been growing worse. The cancer had completely consumed one lung and was working on the second, gradually strangling him. The hospital doctors, whose mission it is to preserve life, were slow to increase dosages of the pain killers (mostly morphine) that were keeping Frank comfortable. We made three or four calls to hospice throughout the day in order to ask them if the frequent interruptions to Frank's sleep caused by a buildup of fluid in his esophagus was to be expected. Hospice was slow to return our calls but when they finally did, they said that the coughing spasms were not 'normal' and that their instructions to the doctors (since Frank was now officially under Hospice, and not hospital, care) were 'titrate to comfort.' Which of course meant keep him comfortable. The hospital doctors were not doing this.
My mother, father and sister headed home. I was staying for a second night with my brother and I had instructions to call them if it looked like Frank was about to go. We had assurances from the hospice nurse who had been taking our calls in the afternoon that the hospital staff would be increasing Frank's meds by a sizeable amount. She had been dismayed at the levels he had been receiving and had been very specific about what those levels should be. Just before my folks left, she had called me to reassure me that the meds would be increased within the hour. With that assurance, I let my folks leave and I went downstairs to get my first meal in 36 hours. It was hospital cafeteria chicken fried steak, but I ate it so fast that I couldn't tell you if it tasted good.
When I returned to Frank's room an hour later he was awake, coughing, doubled over (as much as he could be while lying on his deathbed) with his face bright red. The readings on his IV, which I had learned to read over the last two days, had not changed. His was still receiving the same level of insufficient medication as before. I gave him a drink. Once the coughing fit was under control, he apologized. For what, I don't know. Then he cracked a joke (which he did almost until he could no longer speak) and went back to sleep.
I was pissed off and scared. I called hospice only to be told that they were in the middle of a shift change and the nurse whom I had been dealing with left a few minutes earlier. They said they would forward my message to the night shift nurse. They also gave me her cell phone number. I called that number and got her voicemail.
By this time it was shortly after 8pm. The lights were off in Frank's room except for one lamp that I managed to scrounge up for light to read by. I looked out the window just as the storm began. We would only get about 3 inches but it was enough to close all kinds of schools the following day. You wouldn't know that it would be a minor weather event from the way it began, though. The thick glass in the hospital's windows prevented me from hearing the wind, but I could see that it was howling. Big flakes blew sideways through thousands of pools of light from as many offices on the upper floors of buildings all over Philadelphia. In the street below, an unfortunate few pedestrians fought their way, heads down, along Spruce street. After maybe five minutes of snowfall, the streets were already silver.
With my cell phone to my ear, I listened to yet another hospice voicemail greeting while fighting an increasing sense of hopelessness. Thirteen inches from my face, visibility had dropped to maybe 100 feet.
That was the worst moment.
My phone buzzed to life a few minutes later. It was JoAnne, the night nurse from hospice. The first thing she did was apologize for not being available to answer my calls. She said she understood how unnerving it must have been, but the reason she couldn't answer was that she was talking to Frank's doctors and their supervising physicians! She said she had been living up to her nickname, which was either Grizzly or Mountain Lion or some other equally menacing beast. Within the next few minutes, she said, I should see a doctor come in and increase Frank's meds. It didn't take that long. In fact it happened even before she hung up.
She said I should call her in 30 minutes to tell her if there had been any change in Frank's status for better or worse. When I called her exactly 30 minutes later, she picked up right away. After I reported that Frank was sleeping comfortably, she asked me how I was doing. She called me brave. It was one of the nicest things anyone has ever said to me.
Throughout that night, Frank would wake up a few times. It was clear that the process of dying was accelerating and that we would need to keep our Grizzly breathing down the doctor's necks. But it was also clear that Frank was much more comfortable than he had been. There were no more coughing spasms, just a good deal of night-sweats to contend with.
As horrible as the evening had been, Frank's wakefulness through that long night provided a memory that I will cherish forever; a moment of which I have not spoken or written until now. He woke in a sweat and asked for some dry towels under his head. When I had provided these, he asked for a drink. He was falling back to sleep even as he sipped his cranberry juice. At length, it seemed like he had drifted off, so I put the juice down and moved the tray out of the way. I wiped Frank's forehead with a hand towel. In the morning we would move him to the hospice facility where he could be cared for more appropriately. He would not regain consciousness after that move. And so, though I did not know it at the time, the words we were about to exchange would be our last.
After I wiped his brow, thinking he was asleep, I leaned in and kissed his forehead. I said, "I love you, Frank." And I heard a whisper, soft and with the words running into one another, but clear enough to understand. My brother said, "I love you, Jim."