Tag: Death Meditation

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Hospice Nurse Hadley Vlahos Has Seen Incredible Things from People Facing Death That Defy Medical Explanation.

— Here’s What It’s Taught Her About Life

By Stacey Lindsay

In her bestselling book The In-Between: Unforgettable Encounters during Life’s Final Moments, hospice nurse Hadley Vlahos writes the truth she sees in her job working with dying patients. “The one thing I can tell you for certain is that there are things that defy medical explanation and that in between here and whatever comes next, there is something powerful and peaceful.”

Alas, Vlahos still knows that “in between” and death are tricky topics. Death anxiety is real, she tells The Sunday Paper. But it is this angst that she hopes to dispel, both with her honest posts on social media (Vlahos has over 2 million followers on TikTok and Instagram combined) and in her book, in which she writes about all she’s witnessed and gained. As she says in a video post, “I found life again from caring for dying patients.”

Books on what those who are dying can teach us abound, and they share beautiful similarities in how we must grab the time we have and learn to embrace the beauty of passing on. Yet The In-Between is a book only Vlahos could write. In her captivating narrative, she layers between her accounts of people going to the other side, her own journey of facing poverty as a single mom, taking a chance in becoming a hospice nurse, and finding a Technicolor purpose—perhaps even more remarkable than she ever could have imagined.

A CONVERSATION WITH HADLEY VLAHOS
You write that people ask you about the subject of death often. What does this curiosity say to you?

I’ve been a hospice nurse for seven years now. And in the beginning, it was very hush, hush. You don’t talk about it. And I’ve noticed a huge cultural shift over the last two to three years since COVID, where people want to know. People realized how in the dark they were about what was going on, and they became hungry for knowledge. And it’s wonderful. Whenever you’re educated about something, it reduces the fear around it. I think everyone has that little bit of death anxiety, of course. Whenever we open up and talk about it, it makes it better.

You share these bone-chillingly incredible stories about things that happen to people as they are dying in hospice that, as you say, “defy medical explanation.” Many people connected with loved ones; in one story, Miss Glenda started talking to her deceased sister in the time leading up to her death. Tell us more about what you see.

We don’t learn in nursing school about people seeing deceased loved ones. So, whenever it first started happening, I thought it was a hallucination. Because that’s what I learned: People take medications, and then they hallucinate. And then I started talking to all my hospice coworkers and physicians, and I realized that they don’t believe that it is hallucinations. My first thought was maybe they’re all religious. But then I started being the one in control of my patients’ medication; I was the one who knew what they were taking and not taking. I would see the correlation between no change in medications, some patients not taking medications at all, and people with completely different religious backgrounds and diagnoses, and they were all having the exact same experience of their deceased loved ones coming to get them at the end. I started looking into it, wondering why this was happening and we don’t know why. There is no explanation as to why this happens and it is incredibly interesting to me.

There are a few different ones that happen. There is the seeing of deceased loved ones. There is also something called terminal lucidity, which is where people with dementia and Alzheimer’s will suddenly gain their memories at the end and be able to have conversations. I don’t witness it too much, but it is unbelievable to witness, and we don’t know why that happens either. The other one is what we call a surge of energy. That is where people at the end who have maybe been bed-bound for a while or have not been eating or talking much will suddenly be like, ‘I want to go into the living room and eat my ice cream and chat with my family.’ We don’t know why it happens, but it can sometimes give people a false sense of hope. And that is hard because loved ones will call me and say, ‘They’re doing so much better. I don’t even know if they need to be on hospice,’ when in reality, it usually means that they’re going to die very soon.

Going back to what we were talking about, whenever we educate people, they then know, oh, this could mean that my time is limited, and I need to enjoy this moment and take advantage of it.

This all sheds light on how we may force things on our loved ones who are dying, perhaps food or water, for instance, when they no longer need it. It is well-intentioned, but it speaks to a need for more understanding. What do you wish people who have a loved one who is dying knew?

I wish people knew that patients know that they’re dying. A lot of times, I watch this dance where someone is on hospice, or they’ve had terminal cancer for years, and no one wants to talk about it. Everyone wants to pretend that it’s not happening. What they think they’re doing is they are being kind by not saying, ‘I know you’re going to die one day,’ and not bringing up a difficult topic of conversation. But in reality, what I see with a lot of patients who confide in me is that they feel alone. They have all of these big feelings and thoughts and feel like they can’t talk to anyone about it because people change the subject. So I always tell family members, if your loved one brings it up, please talk to them and don’t try to change the subject. I know it’s uncomfortable. I know that the family members are trying to do the best thing, and they think they’re doing the right thing, but sometimes it leaves patients feeling alone.

You worked as a nurse in a traditional hospital setting before transitioning to hospice. How you speak of the hospice community paints a picture that it’s holistic and more harmonious. What things from the hospice world do you wish could be imbued in the medical world?

I have been what is called a case manager. If you’re in hospice, you have a registered nurse case manager. That means that I had patients assigned to me that were my responsibility. So, if a physician wanted something, the doctor had to come through me. If the chaplain wanted something, he had to come through me. If anyone wanted anything, they would have to come through me. I know not only what medications my patients take but also what prayers they’re saying with the chaplain and what conversations they’re having with the social workers. That kept things very cohesive.

A lot of patients tell me, and I’ve seen this from my own experiences, that it can feel like your cardiologist is telling you to do one thing and another doctor is telling you to do the opposite. No one in there’s saying ‘Okay, the cardiologist said this, let me call them.” Because so often, patients don’t know how to have the medical conversations that need to be had. There needs to be that one person. Right now, the only case managers we have in the hospital-type setting work for insurance companies, and that can be a gray area, as they’re usually on the phone and not caring for the patient and laying hands on the patient. So, I think other areas of medicine could learn from that approach, making it holistic.

You’ve said many times how positive of an experience death has been for so many of your patients. What can that teach us about life?

It can really teach us how to live a good life. Truly. I think that whenever we recognize that our life is short, and that’s such a cliche statement, but whenever we realize that, Okay, one day, I’m going to be on my deathbed. I see my patients, and I think, ‘That’s going to be me one day.’ So am I doing what I want to do every day so that when I’m in this position one day, I don’t have regrets? Or I can look back and do my life review with my own nurse and be like, ‘Yeah, I really went for it. Maybe I failed a little bit, but I really went for it. I really lived life.’ I think that that’s a really beautiful thing to be able to do.

When it comes to life wisdom, regrets, and looking back, what are some things you’ve heard from people as they pass on?

They tell me a lot! ‘Eat the cake,’ which I put in my book, is one of my favorites. I think about it all the time. But one thing that people have told me a lot, which I surmised from all of them, is that they lived for other people instead of themselves. That can mean a bunch of different things. That could be buying a new car because the person on the street has a new car. That could be choosing a career because that’s what your parents or society expected of you. Those are the regrets I’ll hear: They wish they would have just lived for themselves instead of others. Whenever I first heard ‘Don’t try to keep up with the Joneses,’ as someone said to me, I first thought the best way to live is to have no possessions and live a very low-key lifestyle. But as I started talking to more people, I realized it was more about: If you buy this house, is it because you love the house and you love coming home to this house every day? Does it make you happy? Or if you’re really into cars, does that car bring you joy? So I’ve realized that ‘Keeping Up with the Joneses’ means buying stuff for other people, not yourself.

What is the “in-between”?

It has a few different meanings. The main one is that I feel I’m with patients in between this world and whatever comes next. We get that little window of patients between worlds, and they seem to go back and forth. It’s my favorite period of time. I love being part of it.

On a more personal life side, the in-between for me was getting comfortable in the uncomfortable and being able to say, ‘Maybe I don’t have the answers, or maybe my life isn’t exactly how I want it to be, but I’m still finding happiness in this in-between phase.

Your book has been wildly successful. What did you hope people would take away as you wrote it? And what has surprised you now that it’s in so many people’s hands and ears?

I hoped that people would have less death anxiety. Whenever we turn on the TV, we see this tragedy—all the time. There was just a study that came out about how 80 percent of what we’re shown is just traumatic deaths. And I’m aware that that is not the reality for the majority of people. So, I was hoping that people would understand that you’re likely going to die in a slower way. And I think that that helps with people’s death anxiety. That was always my goal.

I was very shocked just how much people loved it. And I was very shocked at how much people related to me on a personal level. I was nervous. I quite literally wrote whatever my thought was. I put myself back in that moment in time, and whatever my thought was, whatever I was thinking, I just wrote. It was extremely honest, and I was a little bit nervous about it. I have been shocked by the messages, handwritten letters, and people just saying, ‘Thank you. I’m really glad to see someone else go through these things.’

And then how many ‘Eat the Cake’ tattoos! I think I’m up to 17 tattoos that I’ve seen. I love them so much!

Hadley Vlahos is a registered nurse specializing in hospice and pallative care. She is known as “Nurse Hadley” to her over two million followers online. Her first book, The In-Between: Unforgettable Encounters During Life’s Final Moments, is a New York Times bestseller. Learn more at nursehadley.com.

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Dia de los Muertos (Day Of The Dead) 2023

More than 500 years ago, when the Spanish Conquistadors landed in what is now Mexico, they encountered natives practicing a ritual that seemed to mock death.

It was a ritual the indigenous people had been practicing at least 3,000 years. A ritual the Spaniards would try unsuccessfully to eradicate.

A ritual known today as Dia de los Muertos, or Day of the Dead.

The ritual is celebrated in Mexico and certain parts of the United States. Although the ritual has since been merged with Catholic theology, it still maintains the basic principles of the Aztec ritual, such as the use of skulls.

Today, people don wooden skull masks called calacas and dance in honor of their deceased relatives. The wooden skulls are also placed on altars that are dedicated to the dead. Sugar skulls, made with the names of the dead person on the forehead, are eaten by a relative or friend, according to Mary J. Adrade, who has written three books on the ritual.

The Aztecs and other Meso-American civilizations kept skulls as trophies and displayed them during the ritual. The skulls were used to symbolize death and rebirth.

The skulls were used to honor the dead, whom the Aztecs and other Meso-American civilizations believed came back to visit during the monthlong ritual.

Unlike the Spaniards, who viewed death as the end of life, the natives viewed it as the continuation of life. Instead of fearing death, they embraced it. To them, life was a dream and only in death did they become truly awake.

“The pre-Hispanic people honored duality as being dynamic,” said Christina Gonzalez, senior lecturer on Hispanic issues at Arizona State University. “They didn’t separate death from pain, wealth from poverty like they did in Western cultures.”

However, the Spaniards considered the ritual to be sacrilegious. They perceived the indigenous people to be barbaric and pagan.

In their attempts to convert them to Catholicism, the Spaniards tried to kill the ritual.

But like the old Aztec spirits, the ritual refused to die.

To make the ritual more Christian, the Spaniards moved it so it coincided with All Saints’ Day and All Souls’ Day (Nov. 1 and 2), which is when it is celebrated today.

Previously it fell on the ninth month of the Aztec Solar Calendar, approximately the beginning of August, and was celebrated for the entire month. Festivities were presided over by the goddess Mictecacihuatl. The goddess, known as “Lady of the Dead,” was believed to have died at birth, Andrade said.

Today, Day of the Dead is celebrated in Mexico and in certain parts of the United States and Central America.

“It’s celebrated different depending on where you go,” Gonzalez said.

In rural Mexico, people visit the cemetery where their loved ones are buried. They decorate gravesites with marigold flowers and candles. They bring toys for dead children and bottles of tequila to adults. They sit on picnic blankets next to gravesites and eat the favorite food of their loved ones.

In Guadalupe, the ritual is celebrated much like it is in rural Mexico.

“Here the people spend the day in the cemetery,” said Esther Cota, the parish secretary at the Our Lady of Guadalupe Church. “The graves are decorated real pretty by the people.”

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A dinner party for dead guests serves up surprising connections

— My friends came to a silent supper with their dead friends and relatives so that we could grieve our loved ones together

‘It’s only minutes into the evening when it becomes painfully, joyfully clear that everyone around the table needs this communion’: India Rakusen at her silent supper.

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I don’t normally feel worried about having my friends over for dinner. Usually, I’ll be covered in splashes of soup and partially dressed when they arrive, but tonight I feel nervous.

Figuring out who to invite was complicated. Not only did they have to be available at short notice, but they had to be up for it, open to something different. Because this evening everyone has been asked to bring a plus-one … someone who has died.

As my living guests begin to arrive, bringing in the dark and subtle nip of the October air, I have the strong sense that they are not alone. I take their coats and ask them for the photo of their guest. Out of their pockets come snapshots. Smiling portraits, a moment of laughter on the stairs, a child on the beach, the ruffled ears of a French bulldog, a matriarch blurred by clouds of cigarette smoke.

In the other room, it’s quiet. The table is laid with candles, autumn leaves from the park and bright flowers, and there are twice as many plates laid at the table as there will be people in the room. I put each photo in its place. Because this is where we will serve food to the dead. We will eat, sometimes in silence, but we’ll talk and remember and, probably, cry. This is a silent supper. A feast for the dead.

It isn’t something I’d even have thought to do if I hadn’t been hanging out with witches for the series Witch for BBC Sounds and Radio 4. I’ve rarely felt comfortable or at ease talking about the dead or talking to someone who’s grieving, but for witches this seems to be different. Over the past year I’ve taken part in seances, been to an ancestor ritual and made an ancestor bottle for the spirit of a loved one. Most witches have regular rituals and altars for their ancestors and, of course, they have a dedicated season for remembrance. Witches believe that on 31 October, or Samhain, the “veil” is thin. It’s a skin between life and death that becomes more porous throughout October until, on this night, life and death can pour into each other – a lot like the world we see around us.

There are twice as many plates at the table as people in the room

This is the idea we play with at Halloween when ghouls and night terrors come knocking at our door. There’s a playfulness and joy at the idea of the afterlife being present, but in reality it’s so far out of reach. This year, I’ve decided to search for meaningful ways to remember the dead.

I decided that hosting a silent supper – historically known as a “dumb supper” – could be a good start. Eating in silence and feasting for the dead has been part of life for centuries. In England, there used to be a tradition called “chesting”.

Prof Diane Purkiss, author of English Food: A People’s History, explains: “This was even more of an Irish wake than an Irish wake. It involved having a feast that was laid out on the coffin of the deceased person. A massive blowout meal with huge treats and sugary goo. It’s honouring the dead, but it’s also quite visceral because you’re doing it on the coffin and it almost brings them physically into the feast.”

A silent supper is one step further. “What you’re describing is a ritual around the scariest and most taboo thing, which is the dead,” she says, “and this is because witches have a very special relationship with them. I define a witch as someone who doesn’t see the dead the way other people do.”

That’s certainly true. Last year my friend, colleague and witch Tatum Swithenbank reached the age at which a much loved and needed auntie had died. So their coven held a silent supper. “Sometimes we just want a space to talk about the people who have passed and there’s not really any great comfort you can give in words,” they told me. “What’s better than listening in a neutral space? That was the power of it. I don’t think you have to be a witch or be practising to do that.” They ate cheese, skull-shaped pizzas and a pumpkin pie.

Feeling underqualified to host my own silent supper, I ask for advice. “Making it dark, with only candles, really helps because people feel they are not as exposed,” says Tatum. “And it’s important to say something at the beginning. I acknowledged that grief is messy and complicated.” Another witch who loves a silent supper is Emma Griffin, who shares the ritual with her children. “It’s really nice for them to know their heritage,” she says. “We’ll have supper and talk about death, look through photos and also talk about death bringing changes. This year we are making food that my dad would like – meat and potato pie, mash and gravy.”

She advises me to make the space sacred and gentle. “I suggest giving people a dress code. When they come over your threshold, give them a little tealight. Remember, it’s a celebration of life. And you want to burn myrrh,” she says, gently but firmly as she talks me through my first ever online myrrh purchase. “It will smoke a lot, so don’t panic.”

The most pressing question of all is what on earth am I going to feed the dead? “Traditionally, the dead seem to want luxury foods,” says Purkiss. “They tend to eat dessert first, you know, life is short, eat dessert first. The dead always feel undervalued and in a way it makes them shirty so you are trying to get them to a position where they feel you value them.”

So, before the event, I threw myself (and my partner) into planning a six-course feast, my guests constantly in mind, especially the dead ones. What would they want? What would we give them if we had the chance again?

I bring Grandma Suzette. The family rarely talks about her

Purkiss approves. “Isn’t that what we all want?” she says. “When someone dies, virtually the first thing you feel is, ‘Oh, if only. If only I’d done this, or if only I’d found the time’. And the whole point of the ceremony is to give yourselves the healing chance to show great aunt Sarah you did really care.”

On the night itself, I choose to bring Grandma Suzette, who I have never met. She died when my dad was a baby. The family rarely talk about her. As my own son turned one, the loss of her for my dad and his siblings, and for me, started to ring loudly in my body. I am desperate to grieve for her.

And that’s what we’re here to do tonight. There’s a lot of normal party noise in the kitchen, but when we enter the dining room, absolutely brimming with myrrh smoke, everything softens. First, we light a candle and welcome our dead guests to the table. It feels a little strange, but maybe it should be normal. After all, eating for – and even with the dead – was once a living tradition, one that’s been purposefully rubbed away.

“There was this way of seeing the dead as beings that you interact with,” says Purkiss, adding that Catholic death rituals, such as kissing ornately decorated bones of saints, or praying in huge ossuaries stacked with bodies, went out during the Reformation. “Protestants threw all of that out, partly because they thought it had become a bit of a scam and it probably had in some cases. But the phrase throwing out the baby with the bathwater comes powerfully to mind.”

And she might be right, because it’s only minutes into the evening when it becomes painfully, joyfully clear that everyone around the table needs this communion with the dead. The phrase “I haven’t allowed myself to grieve” comes up time and again. One friend hasn’t allowed herself to grieve for her mum for 11 years. Another drifted from someone she adored and never felt she had permission to mourn them. A pal describes her love and grief for her dog Buddy as tied up with her longing for a baby. We also share joy and memories. My sister brings my other hilarious, powerful granny. A friend shares the story of a grandad who brought him pure and uncomplicated joy.<

The talking is a release, but so is acknowledging the empty places. “People did that a lot after the First World War,” Purkiss says. “They would lay places at Christmas dinner for people who had died. It makes sense.” There are three mini courses that we eat without speaking. We reflect or we write, and then we burn things we wished we could say to them.

As the courses continue to roll out, my guests talk about how much their plus-ones would have loved the feast, the wine. The chance to eat dessert again and again. We make them feel loved through food. Buddy the dog would have had a field day.

We eat too much, raise glasses of sweet mead to everyone, say the names of people out loud many, many times. We look each other straight in the eyes. No one shies away from death. By the end we all stink of myrrh, but it is as though something had shifted, for all of us. For me, I know how to talk about my grandma now, and I cannot wait to keep celebrating the people I miss in my life.

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A Hospice Nurse on Embracing the Grace of Dying

Hadley Vlahos

By David Marchese

A decade ago, Hadley Vlahos was lost. She was a young single mother, searching for meaning and struggling to make ends meet while she navigated nursing school. After earning her degree, working in immediate care, she made the switch to hospice nursing and changed the path of her life. Vlahos, who is 31, found herself drawn to the uncanny, intense and often unexplainable emotional, physical and intellectual gray zones that come along with caring for those at the end of their lives, areas of uncertainty that she calls “the in-between.” That’s also the title of her first book, which was published this summer. “The In-Between: Unforgettable Encounters During Life’s Final Moments” is structured around her experiences — tragic, graceful, earthy and, at times, apparently supernatural — with 11 of her hospice patients, as well as her mother-in-law, who was also dying. The book has so far spent 13 weeks on the New York Times best-seller list. “It’s all been very surprising,” says Vlahos, who despite her newfound success as an author and her two-million-plus followers on social media, still works as a hospice nurse outside New Orleans. “But I think that people are seeing their loved ones in these stories.”

What should more people know about death? I think they should know what they want. I’ve been in more situations than you could imagine where people just don’t know. Do they want to be in a nursing home at the end or at home? Organ donation? Do you want to be buried or cremated? The issue is a little deeper here: Someone gets diagnosed with a terminal illness, and we have a culture where you have to “fight.” That’s the terminology we use: “Fight against it.” So the family won’t say, “Do you want to be buried or cremated?” because those are not fighting words. I have had situations where someone has had terminal cancer for three years, and they die, and I say: “Do they want to be buried or cremated? Because I’ve told the funeral home I’d call.” And the family goes, “I don’t know what they wanted.” I’m like, We’ve known about this for three years! But no one wants to say: “You are going to die. What do you want us to do?” It’s against that culture of “You’re going to beat this.”

Is it hard to let go of other people’s sadness and grief at the end of a day at work? Yeah. There’s this moment, especially when I’ve taken care of someone for a while, where I’ll walk outside and I’ll go fill up my gas tank and it’s like: Wow, all these other people have no idea that we just lost someone great. The world lost somebody great, and they’re getting a sandwich. It is this strange feeling. I take some time, and mentally I say: “Thank you for allowing me to take care of you. I really enjoyed taking care of you.” Because I think that they can hear me.

The idea in your book of “the in-between” is applied so starkly: It’s the time in a person’s life when they’re alive, but death is right there. But we’re all living in the in-between every single moment of our lives. We are.

So how might people be able to hold on to appreciation for that reality, even if we’re not medically near the end? It’s hard. I think it’s important to remind ourselves of it. It’s like, you read a book and you highlight it, but you have to pick it back up. You have to keep reading it. You have to. Until it really becomes a habit to think about it and acknowledge it.

I was reading these articles recently about how scientists are pursuing breakthroughs that could extend the human life span to one hundred twenty.1

1
Examples of which could include devising drug cocktails that get rid of senescent cells and filtering old blood to remove molecules that inhibit healing.

There’s some part of people that thinks they can cheat death — and, of course, you can’t. But what do you think about the prospect of extending the human life span? I don’t want to live to be 120. I have spent enough time around people who are close to 100, over 100, to know that once you start burying your children, you’re ready. Personally, I’ve never met someone 100 or older who still wants to be alive. I have this analogy that I did a TikTok2

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Vlahos has 1.7 million followers on TikTok, where she posts about her experience as a hospice nurse and often responds to questions about death and dying.

on. This is from having a conversation with someone over 100, and her feeling is that you start with your Earth room when you’re born: You have your parents, your grandparents, your siblings. As you get older, your Earth room starts to have more people: You start making friends and college roommates and relationships. Then you start having kids. And at some point, people start exiting and going to the next room: the afterlife. From what she told me, it’s like you get to a point when you’re older that you start looking at what that other room would be, the afterlife room,3

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According to a 2021 Pew Research survey, 73 percent of American adults say they believe in heaven.

and being like, I miss those people. It’s not because you don’t love the people on Earth, but the people you built your life with are no longer here. I have been around so many people who are that age, and a majority of them — they’re ready to go see those people again.

“The In-Between” also has to do with the experience of being in between uncertainty and knowing. But how much uncertainty is there for you? Because in the book you write about things that you can’t explain, like people who are close to death telling you that they’re seeing their dead loved ones again. But then you write, “I do believe that our loved ones come to get us when we pass.”4

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From Vlahos’s book: “I don’t think that we can explain everything that happens here on Earth, much less whatever comes after we physically leave our bodies. I do believe that our loved ones come to get us when we pass, and I don’t believe that’s the result of a chemical reaction in our brain in those final hours.”

So where is the uncertainty? The uncertainty I have is what after this life looks like. People ask me for those answers, and I don’t have them. No one does. I feel like there is something beyond, but I don’t know what it is. When people are having these in-between experiences of seeing deceased loved ones, sometimes it is OK to ask what they’re seeing. I find that they’ll say, “Oh, I’m going on a trip,” or they can’t seem to find the words to explain it. So the conclusion I’ve come to is whatever is next cannot be explained with the language and the knowledge that we have here on Earth.

An image from Hadley Vlahos’s TikTok account, where she often posts role-playing scenes and video tutorials. She has more than two million followers across social media.

Do these experiences feel religious to you? No, and that was one of the most convincing things for me. It does not matter what their background is — if they believe in nothing, if they are the most religious person, if they grew up in a different country, rich or poor. They all tell me the same things. And it’s not like a dream, which is what I think a lot of people think it is. Like, Oh, I went to sleep, and I had a dream. What it is instead is this overwhelming sense of peace. People feel this peace, and they will talk to me, just like you and I are talking, and then they will also talk to their deceased loved ones. I see that over and over again: They are not confused; there’s no change in their medications. Other hospice nurses, people who have been doing this longer than me, or physicians, we all believe in this.

Do you have a sense of whether emergency-room nurses5

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Who, because of the nature of their jobs, are more likely than hospice nurses to see violent, painful deaths.

report similar things? I interned in the E.R., and the nurse I was shadowing said that no one who works in the E.R. believes in an afterlife. I asked myself: Well, how do I know who’s correct? How am I supposed to know? Are the people in the church that I was raised with6

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Vlahos was raised in an Episcopalian family. She now refers to herself, as so many do, as spiritual rather than religious

more correct than all these people? How are you supposed to know what’s right and what’s not?

But you’ve made a choice about what you believe. So what makes you believe it? I totally get it: People are like, I don’t know what you’re talking about. So, OK, medically someone’s at the end of their life. Many times — not all the time — there will be up to a minute between breaths. That can go on for hours. A lot of times there will be family there, and you’re pretty much just staring at someone being like, When is the last breath going to come? It’s stressful. What is so interesting to me is that almost everyone will know exactly when it is someone’s last breath. That moment. Not one minute later. We are somehow aware that a certain energy is not there. I’ve looked for different explanations, and a lot of the explanations do not match my experiences.

That reminds me of how people say someone just gives off a bad vibe. Oh, I totally believe in bad vibes.

But I think there must be subconscious cues that we’re picking up that we don’t know how to measure scientifically. That’s different from saying it’s supernatural. We might not know why, but there’s nothing magic going on. You don’t have any kind of doubts?

None. Really? That’s so interesting. You know, I read your article with the atheist.7

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“How to Live a Happy Life, From a Leading Atheist,” an interview with the philosopher Daniel C. Dennett, published in August.

I feel like you pushed back on him.

There are so many things in our lives, both on the small and the big scale, that we don’t understand. But I don’t think that means they’re beyond understanding. OK, you know what you would like? Because I know that you’re like, “I believe this,” but you seem to me very interested; you’re not just set in your ways. Have you ever heard that little story about two twins in a womb?8

8
Known as the parable of the twins, this story was popularized by the self-help author Dr. Wayne W. Dyer in his 1995 book “Your Sacred Self: Making the Decision to Be Free.”

I’m going to totally butcher it, but essentially it’s two twins who can talk in the womb. One twin is like, “I don’t think that there is any life after birth.” And the other is like, “I don’t know; I believe that there is something after we’re born.” “Well, no one’s ever come back after birth to tell us that there is.” “I think that there’s going to be a world where we can live without the umbilical cord and there’s light.” “What are you talking about? You’re crazy.” I think about it a lot. Do we just not have enough perspective here to see what could come next? I think you’ll like that story.

For the dying people who don’t experience what you describe — and especially their loved ones — is your book maybe setting them up to think, like: Did I do something wrong? Was my faith not strong enough? When I’m in the home, I will always prepare people for the worst-case scenario, which is that sometimes it looks like people might be close to going into a coma, and they haven’t seen anyone, and the family is extremely religious. I will talk to them and say, “In my own experience, only 30 percent of people can even communicate to us that they are seeing people.” So I try to be with my families and really prepare them for the worst-case scenario. But that is something I had to learn over time.

Have you thought about what a good death would be for you? I want to be at home. I want to have my immediate family come and go as they want, and I want a living funeral. I don’t want people to say, “This is my favorite memory of her,” when I’m gone. Come when I’m dying, and let’s talk about those memories together. There have been times when patients have shared with me that they just don’t think anyone cares about them. Then I’ll go to their funeral and listen to the most beautiful eulogies. I believe they can still hear it and are aware of it, but I’m also like, Gosh, I wish that before they died, they heard you say these things. That’s what I want.

You know, I have a really hard time with the supernatural aspects, but I think the work that you do is noble and valuable. There’s so much stuff we spend time thinking about and talking about that is less meaningful than what it means for those close to us to die. I have had so many people reach out to me who are just like you: “I don’t believe in the supernatural, but my grandfather went through this, and I appreciate getting more of an understanding. I feel like I’m not alone.” Even if they’re also like, “This is crazy,” people being able to feel not alone is valuable.

This interview has been edited and condensed for clarity from two conversations.

Complete Article ↪HERE↩!

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Death Is a Part of Life

— A mindfulness of death practice inspired by the Buddha’s teachings in the Maranasati Sutta

By Nikki Mirghafori

The Buddha taught mindfulness of death teachings in many different discourses. Today we will discuss the Maranasati Sutta (Anguttara Nikaya 6.19). Maranasati means death awareness—marana (death) and sati (awareness or mindfulness). At the beginning of the Maranasati Sutta, the Buddha is said to address the monks, or practitioners (we’re all practitioners), thus:

When mindfulness of death is developed and cultivated, it’s beneficial. It culminates in the deathless, and ends with the deathless—but how does one develop mindfulness of death?

I’d like to go over these benefits before talking about the specific instructions he gave the monks.

The Benefits of Practicing Mindfulness of Death

Many of us in the West might be afraid of death—we don’t want to think about it, we don’t want to talk about it—and yet, bringing death into our awareness has many benefits—benefits for ourselves and our loved ones, benefits in how we live, and benefits for how we die. This practice prepares us to have a sense of peace, not being scared and fearful, when the moment of death arises.

The moment of death is said to be a liberating moment. So doing this practice is supreme training for that important moment of transitioning. However, this practice isn’t just for the potential of liberation. It impacts the way we live and how we show up for ourselves and others—loved ones, people we don’t know, and people we have challenges with.

Living according to our values is one of the many benefits of this practice. When we know that our time in this body and in this life is finite—when we fully embrace finitude—we don’t waste time. When the scarcity of our time comes into the forefront of our consciousness, we tend not to do the unskillful actions that cause harm. When we “greet and hold death as an advisor on our shoulder all the time,” as Carlos Castaneda said, the way we live our life changes.

We live with more freedom, peace, ease, love, and care because we know there is nothing to hang on to. We are a traveler on this earth. This body is not mine. It’s for rent. This life is for rent.

When we realize this, we live differently, we live more freely. We let go of our clinging, our sense of attachment to me, me, me, mine, mine, mine. It shifts our perspective. We can live with more freedom, generosity, kindness, and forgiveness. There is nothing to take with us. There’s nothing to hang on to. So this practice is liberating, just as the Buddha says, and it has the deathless as its fruit.

What does the deathless mean?

The deathless refers to nibbana (nirvana). The deathless is another translation for nibbana, freedom, liberation, awakening. So mindfulness of death practice is a liberating practice. It leads to freedom in the way we live and in the moment that we die—the ultimate letting go.

Summarizing the Sutta

So with that as the preamble, let’s continue with the Maranasati Sutta.

So then, as I read, the Buddha asked the monks:

Do you develop mindfulness of death? How do you develop mindfulness of death, knowing how important it is?

One monk raises their hand and says:

Oh, yes, I develop mindfulness of death. If I’d only live for another day and night, I’d focus on the Buddha’s instructions and I could really achieve a lot. That’s how I develop mindfulness of death.

And then another monk raises their hand and says:

Me too, me too! I practice mindfulness of death. If I’d only live for a day, then I’d focus on Buddha’s instructions.

Another one raises their hand and says:

Me too, me too! I practice as if I’d only live as long as it takes to eat a meal of alms food.

And then the fourth one raises their hand and says:

Oh, Buddha, Buddha, I practice, thinking if I lived only as long as it takes to chew and swallow four or five morsels of food.

A fifth one raises their hand and says:

Actually, the way I practice is, if only I lived as long as it takes to chew and swallow one morsel of food.

And then the last one, the sixth one in the story, raises their hand and says:

Buddha, the way I practice is, I might live only long enough to breathe out, after breathing in, or breathe in, after breathing out. That’s how I practice mindfulness of death.

And then the Buddha says:

Okay practitioners, those of you who said, “I think I’m going to live another day or night and I have time,” or said, “I may live another day,” or said, “I may live to eat another meal,” or said, “I may live to eat three or four morsels of food,” all of you are living heedlessly. All of you are living heedlessly.

Those of you who are practicing while thinking, “I might only live long enough to chew this bite of food,” or “I might only live long enough to eat this bite of food,” or “I might only live long enough for the duration of this in-breath or the duration of this out-breath, that I might die after this in-breath or after this out-breath”—you are practicing heedfully.

So as practitioners, how do we heedfully practice the instructions of the Buddha? The invitation is not to think, Oh I’ll have time, I have another year, or another month, or another week.

Heedlessly was considered thinking I have another day, another few bites of food. The Buddha is inviting us to consider that we could die in this moment, at the end of this in-breath or this out-breath, at the end of this bite of food, right here, right now. The Buddha is inviting us to bring death intimately into each breath.

The Practice of Mindfulness of Death

So with this, I would like to lead a guided meditation for us to practice with these instructions. I would like to invite you to close your eyes, if that’s comfortable for you. To feel yourself sitting or lying down, whatever posture is comfortable for you. Feel yourself having a sense of integrity, a sense of uprightness, letting the body be relaxed while rooted to this earth, to your sit bones, to your feet. Feeling your hands and yet the sense of uprightness, dignity.

Let us begin by bringing our awareness, our attention, into this body. This long fathom body, breathing in this moment. Feeling the breath where it’s comfortable for you, or in your abdomen, sensing the life force moving through.

This body is alive in this moment and breathing. Let’s connect with the sense of aliveness in this body. Breathing, pulsating, this amazing piece of nature. Through this in-breath, through this out-breath.

After we connect with the living, pulsating, alive nature of this body, let us connect to the fact that this body too shall die. This body is nature. It’s not a mistake. It’s not an aberration. It’s not a problem. Death is a part of life. Everything that is born also dies, and this body too.

Letting the awareness connect with the in-breath, with the out-breath. Settling, calming, and appreciating that death is so close. It’s always close. I might only live as long as it takes to breathe in, that’s all. Or I might live as long as it takes to breathe out after breathing in.

Death is so close and intimate. Can we bring it close and intimate, like a friend who advises us, on how to live, how to practice, how to be in this moment attending to the Buddha’s teachings on love, compassion, letting go, and generosity.

What if I only have the length of this in-breath to live? The length of this out-breath to live? Can we open our hearts to relax and embrace this liberating truth of impermanence?

For some of us, this practice can bring up a sense of agitation. It’s okay. You’re not doing it wrong. If agitation arises, let yourself relax with the out-breath. Connect with the sensations in the body in a spacious way, making space for the agitation or the fear that may have arisen. It’s not a mistake. As we allow ourselves to make space and be with what is difficult, arising in this moment. As expand our capacity for peace. To be with what is challenging, we extend our capacity and we cultivate fearlessness, another synonym for nibbana.

So as you do this practice on your own, bring in this contemplation: Death is so close, I might only live as long as it takes to breathe this in-breath or out-breath.

At the end of this morsel of food, how do you want to live? How do you want to show up? How do you want to cultivate your heart and mind in this short flash that is our life?

Remember that this practice of mindfulness of mortality is a liberating practice. It ends in the deathless. In nibbana, in freedom, awakening.

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Death is inevitable

— Why don’t we talk about it more?

Alua Arthur

Death is hard to talk about. But death doula Alua Arthur says if we want to live presently and die peacefully, we have to radically reshape our relationship with death.

 

About Alua Arthur

As a death doula, Alua Arthur help individuals and families to navigate the emotional, legal and spiritual issues that arise around death. Arthur worked as an attorney prior to entering the field of “death work.” Her organization, Going with Grace, educates fellow death doulas in nonmedical end-of-life care. Her forthcoming book, Briefly Perfectly Human, reframes how we think about dying.

Arthur was recently featured in the National Geographic television series Limitless, in which she helped actor Chris Hemsworth map out his own future death. She has been featured in the Los Angeles Times, Vogue, InStyle and more. She is a former director of the National End-of-Life Doula Alliance.

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My Husband Is Dying

— Advice from the Cancer Wars

Lou and Leida’s wedding day, 1982

The emotional and physical toll on both of us during our last year together

By Leida Snow

Everybody has a sell-by date, but some folks know theirs in advance. About a year ago, my husband and I had a meeting with a doctor who was new to us. Nice looking man with an open face. He saw our expectant looks and stopped mid-sentence. Looking at Lou he said, “Has no one mentioned that you have stage 4 cancer?”

No one had. We knew there was an issue. Lou has one kidney from birth, and at his yearly checkup, the kidney specialist said to talk to a cancer doctor. But he didn’t seem overly anxious.

I was grateful that finally someone was speaking truth. The hardest to hear was that Lou had, probably, about a year to live. It was as though someone had taken a very sharp knife and plunged it into my stomach.

The oncologist explained that Lou had cancer cells in his liver, but they were not those expected to be there. They were squamish cells, usually associated with other locations. That meant they had spread (metastasized) from somewhere else. But they didn’t know where they had come from.

A Rare Form of Cancer

Lou has cancer with unknown primary (CUP). It affects 2% to 5% of diagnosed cancers. The doctor’s next words tore at my gut: Because the primary source is unknown, there are no data-based, targeted treatments. In other words, for those with CUP, treatment is a guessing game.

I was grateful that finally someone was speaking truth. The hardest to hear was that Lou had, probably, about a year to live.

We had gotten the news at NYU Langone, a top-flight institution where we see our specialists. The overwhelming advice was to go to Memorial Sloan Kettering (MSK) in New York, the Gold Standard, we were told.

Given the restricted time frame, we expected MSK to build on NYU’s findings. But they had to re-do tests, to validate the results. Over the following months, I swallowed my anger and frustration, as the days filled with tests, biopsies, CT scans, MRIs, x-rays and hours spent waiting. The immunotherapy and chemotherapy had zero effect on killing any disease. I hugged Lou close as he comforted me when I couldn’t control the tears.

Lou suffered all the side effects — extreme fatigue, drug induced lung infection, steroids to deal with that, removal of huge amounts of fluid from his lungs, and, best/worst of all, the loss of over 30 pounds. Lou has never been fat. Now he is emaciated. I try not to show him how scared I am.

Not long ago, I heard a crash in the bedroom to find my 6’2″ formerly strong darling dazed on the floor.

There was the offer of one clinical trial. A hope glimmer. But it had mind-blowing side effects and wasn’t aimed at cancer with unknown primary. Lou decided to pass. I steeled myself to be strong for him.

So now we’ve enrolled in what’s called Home Hospice. It’s basically a space where there is no treatment, but you still hope for a magic bullet. Where I watch my husband become less every day.

Not long ago, I heard a crash in the bedroom to find my 6’2″ formerly strong darling dazed on the floor. Lou said he’d bent over to get his shoes and then started to fall without being able to control what was happening. The wall behind him was blood smeared. He had hit his head.

Feelings of Helplessness

Panic. Heart racing. Cloths to press on his head. An ice pack. The hospice said to do what I was doing. Asked if Lou wanted to go to the hospital. No. Didn’t know if I could get him up. But I did. The cut wasn’t deep, but I thought the bleeding would never stop. On his physician’s advice, Lou is no longer taking Eliquis, a blood thinner.

Last year I wrote an article for Next Avenue that flagged that falls can be the beginning of the end. Now it is shattering, personal knowledge.

I’ve cancelled almost everything. Since hospice, there’s minimal interaction with MSK and the long waits. We had to scrub our last session at MSK’s Center for Integrative Medicine. The acupuncture helped Lou to relax, but he was too exhausted to attempt to go.

A Lonely Road

It didn’t feel right to phone and cancel. I went to the appointment and spoke to the doctor. He counseled me to take care of myself. He asked me to keep in touch. His caring for Lou, and for us as a couple, is something I will always remember.

Lou doesn’t want to spend whatever is left of his life in a hospital, and I want to respect his wishes. My insides churn with helplessness.

A couple smiling together in Paris. Next Avenue
The couple on a trip to Paris, one of their favorite places.

My own NYU internist has scheduled a monthly video visit to check up on me, especially since I’ve lost more than 15 pounds unintentionally. And the local rabbi calls this agnostic at least once a week. Some friends have disappeared, but there are those who keep in touch. And, yes, I do have someone I can talk to. But it is a lonely road.

Over a year later, my 87-year-old husband has outlived his prognosis and is a shadow of what he was. But he is here. And I want him here.

Some people get inspired after a diagnosis. They reach for a goal or get everything in order. Lou is frustrated and bored, but he is too worn out to do much of anything. I want things however he wants them.

Mostly, he wants to sleep or read the newspaper or hug me. That’s what I cling to. That he’ll be there to cradle me in his arms me as long as possible. Sometimes we go to the sofa and lie with my head in his lap. Lou believes his job is to take care of me, and some of his distress is that he can’t anymore.

Sleep? Not so much. Exhausted. Deeply. What to do? Besides cry. Besides wish I could do more for this man who’s been my life for over 41 years. Because I can’t imagine my world without him. He’s my rock and my biggest fan, the one whose faith in me is stronger than my own. His all-embracing love is where I am home. Whatever I want to do, wherever I want to go, I want to share those experiences with Lou.

That’s the hardest part of Now. Because I’m with him in this no-man’s land, where we can only cling to each other and wait for the inevitable.

Of course, we would have tried anything, gone anywhere when we first heard Lou’s diagnosis and the medical predictions of our future. But if I’d known then what I know now, I would have encouraged Lou to make a different decision.

Regretting Endless Tests and Treatments

There are cancers that can be targeted. Cancer with unknown primary is not one of those. I hope anyone reading my words never faces what’s in front of us. But if you find yourself in this nightmare, here’s what I would say: Don’t spend whatever time you have going to doctors, submitting to endless tests and treatments, waiting in anonymous rooms filled with distracted, unhappy people. Sitting on uncomfortable chairs, being so vulnerable. Dealing with all-business staff that has all the time in the world, while your time is limited. And waiting. Waiting. Waiting.

If I had known then, what would I have done? I would have gone back to Paris with my husband, or we could have gone to the Broadway shows we missed.

If I had known then, what would I have done? I would have gone back to Paris with my husband, or we could have gone to the Broadway shows we missed. We would have reminded ourselves how lucky we were to be able to walk home from the theater. We could have taken in New York’s magisterial skyline from celebratory dining spots.

Now Lou is beyond tired. His legs give way and he falls, can’t get up. Sometimes I’m not strong enough, and we have to call for help. His MSK doctor says he’s fallen too many times and is not safe at home. Emotional overload. The doctor wants me to move him to an in-patient hospice. Lou knows not being home is a possibility. He is disconsolate.

No. I am not going to rush into anything. Moving furniture to make room for a hospital bed, even though Lou says he won’t use it. Never-ending efforts to schedule health aides. Medicare comes through with 15 – 20 hours a week. We now need 24/7. Trying not to think too far ahead.

Welcome to the third ring of hell. You may have read that because of COVID many health care workers died/changed careers/moved away. At the same time, more and more people need qualified help. Hours are spent trying to figure out what’s possible.

Recently my darling said, “What a terrible burden I’ve put on you.” I thought my heart would crack. “I don’t feel it as a burden,” I said, startled by my truth. What is breaking my heart is the fear that I won’t be able to help him, that I won’t know what the right thing is. Fortunately, the hospice physician and woman covering for him are knowledgable and compassionate.

So far, there is no pain. One blessing among the horrors. But he is suffering, and we are looking at a future of unknown — though not long — length.

Struggles of a Caregiver

As I’m writing this, Lou is visibly deteriorating. He can no longer turn himself easily in bed or rise to a sitting position without help. He can barely stand for a moment with assistance while he is moved from the bed to the wheelchair.

What is breaking my heart is the fear that I won’t be able to help him, that I won’t know what the right thing is.

I can’t imagine how people navigate this without a caring partner, but anyone taking on the caretaker role should know in advance: there is mighty little guidance. It’s learn-on-the-job. Case workers and nurses may or may not be thoughtful and compassionate, but you have to think of the questions to ask because too often no one volunteers information.

Are you willing to stay in because you don’t trust that the aide will keep your loved one safe? Or because the aide didn’t show up? Are you prepared to spend hours of your time trying to find coverage even though the agency assured you they would always be able to come through? Can you handle the blowback when you cancel what isn’t working? Can you deal with the additional cost? Are you prepared for the never-ending laundry? Can you function with catch-as-catch-can sleep, only a few hours each night?

My husband is dying. But he’s not gone yet. A few nights ago, he agreed to the hospital bed. He understood that if I don’t get some sleep, I won’t be able to be there for him. He hates the bed. Misses me at night. I miss him too.

Lou eats little, sleeps at odd hours, is restless at night. The aide has to wake me. Lou’s speech is now slurred. It’s hard to understand him. He is angry. He forgets. He wants the hospital bed and the strange people in the apartment gone. He wants me with him all the time. I am terrified.

Addendum: The Death of My Husband

In the daytime, he dozes, wakes, starts to read the newspaper, dozes, wakes, tries again to read. My plan was to write how I would put my arms around him, wanting him to know how much I love him. I was going to share how he would reach out to put his arms around me, wanting me to know how much he loves me.

On September 17th, Lou slept most of the day and night. He mumbled about wanting to go home. I held his hand, said he was home and I was with him. I used to call him my giant, and I told him that I would still choose him out of all the giants in the world. I said I would always be with him and he would be with me. He smiled, squeezed my hand and moved his lips to kiss me.

The next day, he woke and surprised me, wanting to brush his teeth, shave, shower. The aide helped him into the wheelchair and into the bathroom. Afterwards, I warmed some chicken soup. He reached for it and gulped down almost half a cup. Then he lay back to rest. Suddenly he was gasping for breath. And then he was gone.

I am numb. The aide gently repeats that Lou is not breathing. A convulsion of tears. I thought there were none left. Touching him. Taking his hand. Stroking his forehead. Kissing him. What do I do now? I am lost.

Call the hospice. They will send a nurse to sign the time of death. Call the funeral home. They will come. Then what? Vast emptiness. The rabbi calls and says I have to embrace life. Says that’s what Lou would want. Rationally I know he is right. Somehow, I will find a way. I just can’t imagine how.

This year, for our anniversary, June 27th, we had to cancel reservations at a restaurant with spectacular Manhattan views. Lou said it made no sense to go when he couldn’t eat much. He was devastated to disappoint me.

I said: “We’ll always have Paris.”

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