My father died last Wednesday afternoon at the age of 87 in a hospice room in Jacksonville, Florida, four months to the day after my mother. In the United States, we tend not to experience death—it’s usually confined inside hospitals—but I was there when my dad died, and I thought the way that I and my family experienced my father’s death to be of interest. This is not intended to be ghoulish; it is what it is. If you don’t want to read about death, stop now.
I arrived in Jacksonville Tuesday evening. Dad, who had been diagnosed with ALS two months earlier, had been suffering significant pain due an intestinal blockage, and so between the pain and the medication, I’m not sure that he was fully aware of my arrival, though there were some indications that he was. My brother D, his spouse J, and their daughter R were all there, as were my three oldest children, J, I, and M.
We knew that he was going to die at this point, but we did not know how long it would take—D and I discussed matters and suspected it could be a week or more. (D is a doctor with extensive experience.) Dad had not wanted ALS to strip him of his independence, preferring to die on his own terms, so we had been trying to make plans to get him to Washington or Oregon or another State with more liberal laws regarding end of life alternatives. We also considered flying to Switzerland, which permits physicians to assist in handling end-of-life matters. My passport is scheduled to arrive next week.
Last Monday, I got a call from my brother telling me that Dad had taken a turn for the worse, and that it might be a matter of days—he was not going to make it to Switzerland. X-rays on Sunday had showed that he was collecting air in his stomach, which was not surprising, so the hospice folks inserted a tube through his nose and down his esophagus to release the pressure. However, the next day, fluid was coming out of the tube, which indicated that he wasn’t able to process anything—no more food, no more water. Further study showed the intestinal block, probably due in part to the narcotic pain medications that had been prescribed for him due to increasing back and joint pain. Surgery was a possibility, but Dad knew that would mean only a tiny delay of the inevitable, and he declined surgery.
I live in the northeast, so I booked a flight for the next day and landed at 7:30 pm. My brother and I talked, and M, my oldest, and I relieved J and I, who had held vigil since the previous night. Dad had been febrile the previous night, and they had spent much of their time changing wet washcloths on his forehead to try to control the fever. By the time I arrived, that fever was pretty much gone.
There was a reclining chair to the right of Dad’s bed, and I sat there, talking with M and changing the washcloth from time to time, talking about music, and holding Dad’s hand. Around 2:00 or so I fell asleep in the chair and M continued to take care of Dad. I woke around 4:00, and noticed that he was becoming agitated—moving his hands and legs, pushing off his covers, moaning. I talked to him throughout the process, but never heard a clear response. M, who was already exhausted, curled up on a couch and got some sleep.
Then, starting around 6:00 AM, Dad’s breathing started to sound more labored. Not gasping, but a sort of snorting draw of breath. Apparently this isn’t uncommon. D stopped by at 7:00, on his way to the hospital where he works. He was committed to several rounds of surgery that day, but told me he’d be monitoring for texts, and that he could get back if need be.
Around 7:30 I went to the hospital’s café and got breakfast for M and myself and brought it up to the room.
By 9:00, everyone was back (except D), and Dad’s breathing had returned to something more normal. So we sat and talked and caught up, and took turns drinking weak coffee in the family lounge down the hall. The nurses came and went with pain medications and others to reduce agitation. Dad looked like he was sleeping.
By 11:00, nothing was happening, and a sense of boredom, if that’s the right word, set in. We decided to go out for a quick lunch at a nearby restaurant, did so, and were back by 1:00. Nothing had changed, but Dad’s caregiver, H, who had helped him out since Mom’s death, was waiting in the room. We thanked her for helping Dad during the previous four months, and she started to show us photos from the time they had spent together. She had taken him for sushi when he developed a taste for it, and the photos showed him enjoying the meal.
Then, while H was showing me the photos, something changed. At about 1:45, I noticed that he had stopped breathing completely and went over to him; I thought it must be the end. But when I felt for his pulse, it was clear and strong. It must have been 30 second before he drew a breath, and the hoarse, snorting sound was back when he did. Then he returned to regular breathing for a few minutes, and it happened again. I called in the hospice doctor and we agreed that we were now looking at perhaps an hour before he died.
I texted D and he got out of surgery and arrived by 2:15 or so. By that time Dad had gone through the stop, gasp, start process perhaps 10 times, and each time, I thought it would be the last. We kept changing the washcloth, holding onto Dad’s hands (he still had a fierce grip) and checking his pulse. I noticed that it was getting harder and harder to detect his pulse. It wasn’t racing or slow, just weaker.
After D arrived, Dad seemed to stop his breathing pauses for a while—then they began again. He did that two more times, starting at about 3:00, and then, finally, his throat just stopped moving. His heart continued to beat for a few minutes, and he was officially declared dead at 3:30 pm. As simple as that.
You know how in murder mysteries they say “The body’s still warm!”? That’s a relative thing. Bodies cool quickly. Within moments, we all knew Dad wasn’t there. His skin took on a yellow, waxy tone, and you would never mistake what was in the bed for my father. He was gone. Though neither of us was religious in any meaningful way, after his breath stopped, but before his heart did, I said the Shema for him.
Hospice asked us what we wanted to do, and we asked that he be cleaned up a little. They did that, while we went home to gather a few things. My brother’s eldest, A, was just arriving, having been unable to get an earlier flight. We got A, and then we gathered some things my father loved—good cheeses, chocolates, crackers, apples, and a $400 bottle of desert wine—Chateau Yquem—he had set aside for a celebration. I think he had planned to drink it with us before ending his life with a physician’s assistance, and we had hoped to celebrate with him on Tuesday, but that was not to be.
We went back to his Hospice room, and set out a feast. They had cleaned him up and he looked peaceful, not alive, but peaceful. We set out trays and we opened the wine and we drank to all of the good things he had done for us, all the changes he had made in the world, all the travels he and my mother had undertaken in their 65 years together. And then each of us said our goodbye in turn. I kissed the forehead of the thing that had contained my father—but it wasn’t him. He was to be found in the complex firing of nerves and chemicals that make up the brain at work; now it was at rest, and would never fire again. I kissed his body, but I remember his life.
And my brother and I, orphans, walked from our father’s presence for the last time.