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“When my father awoke at 7 a.m., I happened to be in the room, in the middle of this crisis, with a camera,” Robert Nickelsberg wrote in an email. He was recounting the last days of his father, Harold Nickelsberg, who died at the age of 98 on Christmas Day 2014. Robert, a photojournalist, is best known for his work covering conflicts in Afghanistan, Kashmir and Iraq.
In October of 2014, his father fell at home and was taken to the hospital, where an MRI revealed that a hematoma from an earlier, more serious fall was putting pressure on Harold’s brain. In December he began having seizures and was taken to the hospital. After he was released, Robert, his youngest son, arrived at 2 a.m. in San Juan Capistrano, California, where Harold had retired.
“He was surprised to see me,” Robert’s email continued, “gave a genuine smile, asked about the flight and soon expressed an appetite for some food. I started to take pictures, partially out of my nervous reaction to a crisis I felt was going out of control and the need to document this and to stay useful in some way. To create something from this chaos. It’s what I do.”
During Harold’s brief stay at the hospital, it became clear to Robert that when his father returned home, it would have to be to in-home hospice care. Robert arranged for a hospital bed to be put in the den and for a team of nurses to provide round-the-clock care.
Like Harold, the vast majority — about three-quarters — of Americans say they want to die at home, but only 20 percent to 25 percent do. Over the past 10 years, hospice care has become an increasingly popular option for the terminally ill.
These are the last days of Harold Nickelberg’s life, in the words of the people who cared for him at the end and in pictures by his son.
Robert Nickelsberg: [Before the seizures began] it was obvious that things were breaking down. [My father] was no longer reading two papers a day and doing two crossword puzzles a day. He wasn’t interested in television anymore. He was angry that “M*A*S*H” was not on anymore. He canceled his New Yorker subscription, which was very strange — he had it for like a hundred years. He wasn’t reading anymore, because he couldn’t retain the information.
And the seizures were an indication that he was not bullshitting us. He wasn’t lazy. He was very energetic. His mind was sharp as a tack. He had a great memory.
But I could hear the caregiver’s voice changing on the phone. She was getting worried. She said she couldn’t control it anymore. Something more serious needed to be done.
Sam Lynn Clayton, R.N.:Bob, when I arrived, your dad was in crisis. We did get him comfortable.
Nickelsberg: Sam arrived at the house with a blue nurse’s outfit on. Tall, thin, wiry, she immediately went to work crushing Ativan, which is an anti-seizure medication, and adding a bit of morphine. When a patient goes into hospice care, there is sort of a kit that comes with it, not just Band-Aids and Mercurochrome. Now I pulled back and realized this is a one-way shot. They are not just going to stop the seizures. This is it. He is going into crisis hospice care and not coming out.
Trudy Jenks, R.N.: I often talk with the family about how important it is for them to be the family. To be the daughter, to be the husband, to be the granddaughter and try to let us be the nurses and the caregivers. Sometimes when people are so tired and stressed from making decisions, they kind of run out of coping strategies and start having car accidents or crashing into walls or dropping things or becoming irritable and angry. They don’t mean to be. They’re just stressed to the max. We start trying to take care of families as soon as we get there, and we realize that maybe they’re already tired. Or maybe [death] is just pretty hard to face.
Clayton: I am an ex-dancer, and I tell the patients, caregiver and family member that this is a one-time performance. You don’t get a second chance. Do what you need to do, say what you need to say. This is it. No regrets. If I can facilitate saying what needs to be said, to do what is important so there are no regrets and later no guilt, I have done my job. I have also made promises to the dying patients, and I have kept each one. They are mostly about keeping them out of pain.
Loraine Ferrara, R.N.: I originally started out wanting to be a midwife. Where I came to regard myself in this work genuinely is as a spiritual midwife, as somebody who’s helping somebody to be born into whatever it is that they would do next.
With Bob and his family, I talked about being at the bus stop. All I can do is walk with [the patient] down to the bus stop, help him wait for the bus. I can help him get on the bus. That’s my part of it. The point is that I don’t get to determine at what point that happens. Death comes in its own way, on its own terms. That’s the other part I think that Americans have such a hard time with.
Clayton: [Death] is a natural part of life that became an ICD [International Classification of Diseases] code in less than 90 years. We were not meant to live forever. And yet it appears that Western medicine and the pharmaceutical industry have gotten Western culture to buy into this idea.
Ferrara: We’re not exposed to death enough in this culture, partially because of technology. A hundred years ago, I’m sure, my grandfather saw people die all the time.
Jenks: I was born and raised on a farm and was familiar with the fact that things are born and things die and that that is a continuum of life. Your favorite horse, something happens to it, and it has to be euthanized, or your favorite dairy cow that you go milk every morning dies because she’s old. That was part of it, and it was sad, but I remember even trying to make the animals feel good. I would sit there and sing to them sometimes.
Nickelsberg: During dinner, the caseworkers would tell us their stories, their cases, because my father was basically out. He was sitting there, and they’d be like, “How’s his heart rate?” They would check the monitors, blood pressure, no food, no water, checking the urine level — gone, basically static — so you had a chance to talk. Otherwise they would sit and read or write reports.
There was a lot going on, even though nothing was going on.
Ferrara: I’ve had people yell at me and scream at me. I sort of become the symbol for every single doctor, every single hospital, every single painful test, every single screw-up. All of a sudden, I’m the person who is responsible. I [recently] had a guy who kept saying, “You people did this” and “You people did that.” After about the fourth time, I said, “You have to understand, I’m from hospice.” [But he said] “You’re all the same.” In his head, we were.
Nickelsberg: So the conversations went pretty quickly, and I said, “I am going to be taking pictures of this.” If somebody new came in, I said, “I am here to document this. I don’t know what I am going to do with it, but you guys are amazing. I have been doing this my whole career, and I think that this should be recorded for greater distribution. It is really amazing how well you guys are coordinated, how you react, how in sync you are with each other.” This is the strength of the system.
Clayton: A message that I give to the living is that they should have no regrets. Do what you need to let go of guilt. If I can give a gift, it is to explain death even after the fact. One day I met a woman on the [shuttle] going home. We had 40 minutes to talk. She told me what she did for a living, and I told her what I did. Both her mother and her brother had died on hospice. One went well, and one was difficult. She was carrying a great deal of sadness and guilt about her mother, who died alone when she left the room. So I asked, was her mother a private person? And she said that she was. So I explained that often people wait for someone to leave, like they need privacy in order to go. This seemed to resonate with her, and she cried and told me that a heavy weight had been lifted off her shoulders.
Nickelsberg: The six hospice staff explained it very simply. Most had been registered nurses in the past, either in emergency care, the oncology ward, rural medicine and midwifery, assisting to keep people alive. Now they were practicing medicine that assisted patients to transition to the next stage of their life, comforting those at the end of their lives.
Ferrara: Towards the end, people’s breathing becomes ragged. They open their mouths, their breath smells bad. They’re in an odd position. Their skin turns an ugly color. That’s when you really have to understand that you are working with spirit, no longer with body. If hospice nursing is anything, it’s the art of transition.
Clayton: What I find fascinating is all people, across socioeconomic and racial lines, when they are transitioning [they] will reach in the air with their hands and exhibit what I call the dance of death. Their hands reach up, and sometimes it appears like they are between two worlds. I imagine there is a neurological rationale for this.
Nickelsberg: On the 25th, he expired, at 12-something, between 12 and 1 in the afternoon. Twenty-fifth of December, Christmas Day. But it was California, where, you know, Christmas is quiet. There is no snow or freezing, and everyone is out wearing red like a reindeer.
Nickelsberg: The undertakers were there. The funeral home had arrived. Two guys wearing black suits had come in with their gurney, an empty gurney. The hospice nurse had dressed him — proper shirt, pair of pants. He’d been shaved. The undertakers took a certain amount of data from me, then wrapped him in a white sheet and pulled him over to a gurney, which is at the same height as a hospital bed. Took him out to the hallway. I was trying to photograph it all, figure out, is there enough light in here, and what the hell is going on, you know? And they say, “Was your dad a vet?”
And I am thinking, “Why?” And they have the blanket ready to cover the white shrouded body, and I say, “Yes, he was.” And they quickly turned it around and turned it into an American flag. They had a two-sided blanket that comes as a kit on the gurney.
Nickelsberg: My dad didn’t polish his brass all the time, and he was certainly left of center in his political point of view — against the Vietnam War. I think in the end two people showed up from some National Guard unit around New Jersey, where he was buried. And very respectfully, there was a recording of taps. And the flag, the middle of winter and dark brown, faded green cemetery — it was perfect. Red, white and blue. And it wasn’t out of place. It wasn’t gratuitous, and it would have meant something to him, and I think if it had been one of his buddies, if he had been at that cemetery, he would have said that it was well done.