Category: Talking about death

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What Does It Feel Like To Die?

By Gabrielle Elise Jimenez

For the past few months, when appropriate, I have asked some of my patients what it feels like to die. My reason for this is because I want to provide better care; I want to truly tap into all the ways that we can relieve someone of the struggles they experience when they are dying. I found it interesting that most people said that usually, no one asks that particular question. I explained my reason for wanting to know, and almost everyone had something to say.

I think we always assume pain is in the forefront, and that has proven to be true but it goes deeper than that. With the pain, comes the fear of never being free of the pain. The emotional exhaustion from having to constantly try something new, or increasing something that doesn’t work, or worse, not having it even touch the pain at all, is a heavy weight to bear. There is a very common thread amongst people who are experiencing pain; no one wants to die feeling that way, or worse, living that way until they die. While medications are effective most of the time, usually they just knock the patient out for an hour or two, and then are woken up by their pain once the medication wears off. Each person told me they do not want to die that way. One person said to me, “every day I lay here in this bed and I don’t move; not because I am paralyzed physically, but because I am paralyzed by the fear of making my pain worse if I move. Every time someone comes in here to reposition me, or check on me, I prepare myself for pain”. This resonated huge for me.

Death is hard enough, but death with pain is a constant debilitating struggle. I certainly can’t speak for anyone else, and I am in no position to tell you what to do, but after hearing this over and over again, and as a patient advocate, I can assure you anyone nearing the end of life, struggling with severe pain does not want to hold on and wait it out. They certainly do not want to feel this way until they take their last breath. My advice is if given the opportunity to ask them what they want or need, and they have a voice, listen to them and respect their wishes. It may not be something you approve of or agree with, but this isn’t about you. Imagine if you were able to be the difference between a painful or a peaceful death.

Emotional pain is a runner up to physical pain for those at the end of life. You would be surprised at how many people are actually not afraid to die. They are not as focused on the death itself, but more often, the amount of time it takes to get there. One person said to me, “every morning I wake up, I want to cry because I am still here”. Lying in a bed, day after day, knowing the inevitable is around the corner can be agonizing. I broke down and cried when a patient said to me, “I just want to die and I can’t. I am given a death sentence, of which I can no longer fight, but I am forced to just sit here and wait. There is no dignity in death. I have to die on someone else’s terms”. How do you respond to that?

They struggle with losing their independence, and having someone else clean and change them. This was repeated often. Having someone else move you from side to side, rolling you over as your head is pressing into the side rail, not even realizing that your shoulder is crunched down under you so hard you ache for hours after. And then, once you are cleaned up, re-positioned how someone else thinks you should be, you just lie there and cry inside. As death nears, they can’t help but think about their death; what it will be like, when it will happen and why the hell it isn’t happening sooner.

Meanwhile on the other side of this, is the family and loved ones crying at your bedside begging you not to leave them. So with everything else you are experiencing, guilt comes along and rears its ugly head. One person said to me, “I feel like I have let them down”. That is a heavy responsibility to carry. It is easy for us to think about how their death will effect us; but what most of us don’t think about, is how our feelings of their impending death effects them. So many have said to me how badly they wish they could tell their loved ones this isn’t their first choice, they didn’t want to get sick, they don’t want to die. They want to say they are sorry; sorry for getting sick, sorry for this long drawn out process, and most of all, sorry for the pain it causes everyone around them. Here they are dying and they want to apologize.

While I heard about the physical and emotional pain, I also heard the lovely things as well. Even people who were usually private and quiet and preferred to be left alone, welcomed the bedside visitors, the memories shared, the music played and the heartfelt goodbyes. They want to know how much they are loved, they want to know they made a contribution, and even though it is a hard pill to swallow, they want to know they will be missed. We think a lot about our own grief, and what saying goodbye to someone will feel like, but they have that too, in a very big way.

Some of the most beautiful conversations I have had are about the visions people see, the people standing next to the bed, or walking by a door or window… the ones that we can’t see. People tend to think they are delirious and afraid, but that is not what they have shared with me. In fact most feel safe and protected knowing there is someone watching over them, and perhaps waiting to guide them safely to wherever it is they will be going. I can’t help but wonder if it is our own fear that we are projecting onto them. What if instead, we asked about who or what they saw, encouraging them to trust us with their visions.

I cringe every time I see someone moving a patient without telling them first; repositioning them every two hours because that is what they were taught, not once thinking if this is truly in their best interest and certainly not thinking of the pain or discomfort this might cause. Whether or not they can verbalize, they should always be treated with kindness and respect. They should be offered a gentle warning before being touched, moved, or given medication. Lights should not be suddenly tuned on above their heads, after lying in a darkened room, covers should not be piled on heavily or quickly removed, and they definitely should NOT be lying naked for all to see when being changed. And please, if someone is actively dying, put the blood pressure cuff down, why are you taking their blood pressure? This irritates me like you can’t believe. Most vital signs can be assessed visually or by touch; at the end of life, please don’t put them through those tests. So many things we could do differently if we took the time to ask them what they need, or if we simply thought about their needs.

I remember awhile back, I walked in to visit a patient and said, “how are you doing today?” which seemed like a valid question. I had no idea the effect that question would have on someone until I received his response. “How do you think I feel, I am dying”. I never asked that question again. I start each visit now with, “it is really nice to see you”.

As I have said in many of my previous blogs, this is their experience not ours. The fact that we assume what they need, without asking, even when they have a voice, is selfish. As a society we have grown disrespectful on many levels and I am reminded of this most of all when talking to people who are at the end of their life. These are human beings who still have a voice and I think it is our responsibility to hear them. If we listen, if we truly take the time to ask them what they need, imagine the care we can provide not only to them, but also to those who do not have a voice, who can’t verbalize their needs. I only spoke to a handful of patients, so my findings do not speak on a global level, but I do think it is a good start to providing better care.

What does it feel like to die? It is emotional, it can be painful, it is usually sad, and it can sometimes be incredibly lonely. People do not die the same way and while there are similarities and common symptoms, each is still very unique. Therefore we need to take the time to listen, to observe, and assess what each person is experiencing, and what they might need when they are going through the dying process. We cannot treat everyone the same way. The only consistencies we should have when caring for someone at the end of their life, is that it is always done with kindness, compassion, respect, and honesty.

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‘Transhumanist’ eternal life?

No thanks, I’d rather learn not to fear death.

By Arthur C. Brooks

Herodotus, in the 5th century B.C., recorded an account of a race of people in northern Africa who, according to local lore, never seemed to age. Their secret, he wrote, was a fountain of youth in which they would bathe, emerging with “their flesh all glossy and sleek.” Legend has it that two millennia later, Spanish explorers searched for a similar restorative fountain off the coast of Florida.

We are still searching for the fountain of youth today. Instead of a fountain, however, it is a medical breakthrough, and instead of youth, we seek “transhumanism,” the secret to solving the problem of death by transcending ordinary physical and mental limitations. Many people believe this is possible. Observing a doubling of the average life span over the past century or so through science, people ask why another doubling is not possible. And if it is, whether there might be some “escape velocity” that could definitively end the aging of our cells while we also cure deadly diseases

Lest you think this concept is limited to snake-oil salesmen and science-fiction writers, the idea that aging is not inevitable is now in the mainstream of modern medical research at major institutions around the world. The journal Nature dubbed research from the University of California at Los Angeles a “hint that the body’s ‘biological age’ can be reversed.” According to reporting by Scientific American on research at the Salk Institute for Biological Studies: “Aging Is Reversible — at Least in Human Cells and Live Mice.”

The promise to end old age is exciting and mind-boggling, of course. But it raises a question: Why would we want to defeat old age and its lethal result? After all, as writer Susan Ertz wryly observed in her 1943 novel “Anger in the Sky,” “Millions long for immortality who don’t know what to do with themselves on a rainy Sunday afternoon.

Your boring Sundays notwithstanding, perhaps you think it’s obvious that getting old and dying are bad. “The idea of death, the fear of it, haunts the human animal like nothing else,” anthropologist Ernest Becker wrote in his 1973 book, “The Denial of Death.” Why else would we willingly put up with a medical system that seemingly will spend any sum to keep us alive for a few extra days or weeks?

It is strange that the most ordinary fact of life — its ending — would provoke such terror. Some chalk it up to what Cambridge University philosopher Stephen Cave calls the “mortality paradox” in his excellent 2012 book, “Immortality: The Quest to Live Forever and How It Drives Civilization.” While death is inevitable, it also seems impossible insofar as we cannot conceive of not existing. This creates an unresolvable, unbearable cognitive dissonance. Some have tried to resolve it with logic, such as the ancient Greek philosopher Epicurus’ observation that “death, the most terrifying of ills, is nothing to us, since so long as we exist, death is not with us; but when death comes, then we do not exist.”

Transhumanism responds, “Whatever, let’s just avoid that whole second scenario.”

Another argument for transhumanism is less philosophical and more humanitarian. We think avoidable deaths are a tragedy, don’t we? Well, if most of the 27 million annual worldwide deaths of people age 70 and over could be somehow avoided, wouldn’t that put them in the category of “tragedy”? Shouldn’t we fight like crazy to avoid them?

While the transhumanism movement is making progress, it isn’t without its skeptics. Some don’t think it will ever work the way we want it to, because it asks science to turn back a natural process of aging that has an uncountable number of manifestations. Critics of anti-aging research envision any number of dystopian futures, in which we defeat many of the causes of death before very old age, leaving only the most ghastly and intractable — but not directly lethal — maladies.

Imagine making it possible to cure or treat most communicable diseases and many conditions and cancers that were once a death sentence, but leaving the worst sort of dementias to ravage our brains and torment our loved ones. Wait, we don’t just have to imagine that, do we? As Cave puts it, we are “not so much living longer as dying slower.” Will transhumanism inadvertently bring us more of this?

No one can say conclusively where the transhumanist movement will go, or whether it will ultimately change the conception of living and dying in the coming decades. One way or another, however, I think we could productively use a parallel movement to transhumanism: one that seeks to transcend our limited understanding and acceptance of death, and the fact that without the reality of life’s absence, we cannot understand life in the first place. We might call this movement “transmortalism.”

Of course, a huge amount of work to understand death has gone on over the millennia and starts with the straightforward observation that confronting the reality of death is the best way to strip it of its terror. An example is maranasati, the Buddhist practice of meditating on the prospect of one’s own corpse in various states of decomposition. “This body, too,” the monks recite, “such is its nature, such is its future, such its unavoidable fate.”

Frightening? Far from it. Such exposure provokes what psychologists call “desensitization,” in which repeated contact makes something previously frightening or foreign seem quite ordinary. Think of the fear of death like a simple phobia. If you are afraid of heights, the solution might be, little by little, to look over the edge. As the 16th-century French essayist Michel de Montaigne wrote of death, “Let us disarm him of his novelty and strangeness, let us converse and be familiar with him, and have nothing so frequent in our thoughts as death.”

Perhaps while we wait for the promises of transhumanism, we should hedge our bets with a bit of transmortalism, which has the side benefit of costing us no money. Who knows? Maybe the solution to the problem of death comes not by pushing it further away but, ironically, by bringing it much closer.

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Coping With Complicated Grief

After loss, it’s a different path to ‘the new normal’ for those with depression

By Suzanne Boles

“Thank you for the intervention. Friends and family came to be with me. I agreed to be admitted to hospital. Am waiting for a bed. I had a horrible breakdown. I am sorry for worrying you.”

This was my message posted on Facebook to friends on October 19, 2014. It was over a year since my husband, Bob, passed away. Every day since he died on June 8, 2013 was like walking through thick, muddy water with a constant fog clouding my head.
I was a willing participant in the loss and grief cycle from day one. I had no interest in the future. The past was painful, the present bleak. Every day I woke up crying, for days, weeks, months, and soon a year passed. Depression is part of the initial journey. Many people feel like they can’t survive without their loved one. The agony is enormous, but the pain starts to diminish with time.

It is natural to experience intense grief after someone close dies, but complicated grief is different.

My story was different. The depression was pervasive and continued, even escalated. I journaled the experience, intermittently, in a blog. Posting my thoughts gave me temporary relief. Then I’d go down the rabbit hole again. What I didn’t realize was that I was experiencing something more than a normal grief journey. Though not diagnosed, researching my symptoms led me to what’s known as Complicated Grief.

The Intensity of Complicated Grief

According to The Center for Complicated Grief (CG) “[it] is a form of grief that takes hold of a person’s mind and won’t let go. It is natural to experience intense grief after someone close dies, but complicated grief is different. Troubling thoughts, dysfunctional behaviors or problems regulating emotions get a foothold and stall adaptation. Complicated grief is the condition that occurs when this happens.

“People with complicated grief don’t know what’s wrong. They assume that their lives have been irreparably damaged by their loss and cannot imagine how they can ever feel better. Grief dominates their thoughts and feelings with no respite in sight.”

According to the Mayo Clinic, CG can be determined “when the intensity of grief has not decreased in the months after your loved one’s death. Some mental health professionals diagnose CG when the grieving continues to be intense, persistent and debilitating beyond 12 months … Getting the correct diagnosis is essential for appropriate treatment, so a comprehensive medical and psychological exam is often done.”

The Diagnosis That Probably Saved My Life

I had seen several therapists. They tried to help, under the assumption that I was grieving as any woman would after the death of her husband. What I didn’t tell them was that my sadness had escalated to suicide ideation.

On the evening of Saturday October 18, 2014, I posted on Facebook: “Please take care of my cats.” My cry for help wasn’t a mystery to friends who were following my downward spiral. Phone calls went out from people in several cities to friends who lived near me who came to my house, then later family. Despite my uncharacteristic reaction screaming at everyone who entered the door and yelling at them to leave, I eventually calmed down and agreed to be taken to the hospital.

I was put in a room with no windows and a security guard. Some family members came in. The doctor followed and told me the medication I’d been taking for many years to control my clinical depression wasn’t working. When that happens, ironically, it can make you more depressed.

That diagnosis rocked me to the core and probably saved my life. Every day had been torture. And now I had someone who was telling me they could help me and life could actually get better.

I agreed to be admitted to hospital and new medication was prescribed by a hospital psychiatrist. I stayed there just over a week, eventually getting day passes, then a weekend pass. After my release, I was closely monitored to ensure my medication was doing what it should have done. I started seeking other ways to help me out of the dark pit and took part in several Cognitive Behavioral Therapy (CBT) programs, or what I refer to as retraining the brain to focus on the positive.

Live in the Moment

Today, I lead what those newly grieving are told is “the new normal life” because, when our loved ones die, life as we knew it is inevitably changed forever and will never go back to what we thought was our normal life. As Buddhist monk and peace activist, Nhat Hanh, said, “It is not impermanence that makes us suffer. What makes us suffer is wanting things to be permanent when they are not.”

The new life can be good if we come to terms with our losses; remember them with loving kindness; embrace our family, friends, and new people who come into our lives and accept that nothing is ever permanent in life. The biggest lesson I learned is to truly live in the moment and enjoy each precious day as a gift.

If you, or someone you know, has been suffering with extreme grief symptoms for over a year it might be time to seek help.

Coping with Grief and Loss

While grieving a loss is an inevitable part of life, there are ways to help cope with the pain, come to terms with your grief and eventually, find a way to pick up the pieces and move on with your life. Here are some suggestions from Help Guide:

1. Acknowledge your pain.
2. Accept that grief can trigger many different and unexpected emotions.
3. Understand that your grieving process will be unique to you.
4. Seek out face-to-face support from people who care about you.
5. Support yourself emotionally by taking care of yourself physically.

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The Ethical Will

Life Is About More Than Your Possessions

By Deborah Quilter

Have you considered how to pass on your non-material assets?

When people find out Debby Mycroft helps people write ethical wills, she always gets a predictable response: The Lament.

“They say, ‘Oh, I wish I had a letter from my dad or grandmother or great aunt,’ whoever that person was. I have not come across a single person who has not wanted a letter from that special person,” says Mycroft, founder of Memories Worth Telling.

Unlike legal wills, ethical wills — also known as legacy letters — are not written by lawyers, but by you. They can include life lessons, values, blessings and hopes for the future, apologies to those you fear you may have hurt or gratitude to those you think you have not thanked enough. Traditionally, they were letters written by parents to children, to be read after death.

People who do not have children address them to friends or groups. One of Mycroft’s clients was placed in child protective services when she was quite young because her parents were addicts. “She had a rough upbringing. She intentionally decided not to have children herself. But she wanted to write an ethical will to other foster kids to let them know [they] can survive this,” Mycroft explains.

Why Write an Ethical Will?

Think that your life isn’t important enough to warrant an ethical will? Mycroft disagrees, saying, “You don’t have to be a war hero or a Nobel Peace Prize winner for your story to have value. When people accept awards at the Olympics, they thank the people who had an impact on their life, like Mom or Dad, who was always there to take them to training.”

But there’s an even more important reason you might want to consider a legacy letter. According to Barry K. Baines, author of Ethical Wills: Putting Your Values on Paper, such documents can bring enormous peace of mind.

Baines recalls one dying patient who was bereft because he felt there would be no trace of him when he left. “The first wave would wash away his footprints. That sense of hopelessness and loss was overwhelming,” says Baines. The man rated his suffering at 10 out of 10; after he wrote his ethical will, his suffering reduced to zero.

Don’t wait until you are on your deathbed to do this, Baines warns. As soon as you articulate your values, suddenly you start to live your life more intentionally. Especially if you share it.

“Live your life as you wish to be remembered,” Baines advises. Plus, he adds, legacy letters can help with making amends, addressing regrets and healing relationships.

Ethical Will: Telling Your Own Story

If you don’t feel capable of writing your legacy letter yourself, you can use an online template, take a workshop, read a book about it or work with a professional writer.

But don’t judge your skills harshly. Baines finds that whether people are educated or not or if their letters are simple or complex, they always have a certain elegance because of the truth they contain. “When the families get one, they just glow,” Baines says, adding, “This is a unique gift that only you can give.”

When you write your letter, don’t just say, “My core values are consideration, gratitude, kindness, simplicity,” advises Mycroft. Tell a story about how you’ve lived these values.

In her own legacy letter, Mycroft told her kids about a temp job she had as a teen. She appeared nicely dressed in a skirt, blouse and heels. When she walked in, the employers gave her a funny look and asked, “Why do you think you are here?”

She explained the agency had sent her out for secretarial work. Then her employers handed her a hard hat and steel-toed shoes. “That’s when I look at them quizzically.”

Turns out they were a plastic-bag manufacturer and she was supposed to sort through damaged goods to salvage the ones that could be sold.

“I was so angry that that agency had sent me out on that job. It was hot and humid in Virginia. I was fuming,” Mycroft says. “When I got home, my parents started grilling me. They said, ‘Did you agree on this job?’” And Mycroft confirmed that she did.

They asked what the contract said. Mycroft replied that the contract was pretty clear. Did she sign the contract, her parents wanted to know?

“Yes, but,” she says she told them. “And my parents said, ‘You signed it; you’re committed to it.’”

Mycroft stuck with the job as promised. “That was my first lesson in integrity, perseverance and diligence,” she recalls. She did what she said she would do. As a postscript, she got fantastic jobs from the agency over the rest of the summer. They knew they could count on her.

What Goes Into the Legacy Letter and What Stays Out

Ethical wills are often likened to letters from the heart, so perhaps the best advice is to literally write a love letter.

Love letters don’t recriminate. They don’t judge. They don’t scold. A love letter is there to show how much someone matters to you.

Criticisms and judgments should be left out, advises Mycroft. It’s okay to include regrets and family secrets, even if they hurt. If worded properly, these could bring the family to a place of acceptance and understanding.

She notes, “Sometimes when those things are hidden for so long it causes a lot of resentment — as in] why didn’t they tell me I was adopted? I wish I had known.”

“Definitely avoid manipulation,” Mycroft advises. “Legacy letters are beautiful expressions of love and encouragement, telling other people what is so fantastic about them. I do not think they should be hands reaching up from the grave slapping you or saying, ‘I told you so.’”

Think about how your letter might be received. Baines worked with a woman who had a very hard life. “Every part of her ethical will was blame and guilt-tripping,” he recalls. While some people can turn around a bad experience and use it is an example of what not to do, this woman could not.

“It almost seemed like she was purposely trying to hurt people,” Baines says. But eventually she realized that and gave up, sparing her family the hurt she would cause them.

Get a Second Opinion

Baines believes writers should show their legacy letter to a trusted friend before passing it on, to avoid inadvertent errors. Your reader might say, “You mentioned your two children, but you only write about one and not the other.” That could be extremely hurtful.

Baines also urges people to share the letters while they’re living. It might be painful, but there’s still potentially an opportunity to mend wounds. After you die, there’s no recourse at all.

What About Videos or Selfie Videos?

Some people make videos or selfies of their ethical wills, but keep in mind that technologies can become outmoded.

Mycroft gave both her children the letter and a video of her reading the letter so they not only have her words, but can also hear her voice.

“I’ve heard of people saving voicemails of people who have passed on,” she says. “Can you imagine saving a voicemail and all it says is ‘Susie, are you there? Can you pick up? Hello?’ If you’re willing to save that message just to hear their voice, how much more powerful would it be to hear your voice reading that letter?”

The Time Is Now

The time to write your spiritual legacy is now. Mycroft provides a case in point about her mother, who knew the family lore and lineage.

“I gave her one of these fill-in-the-blank family history books because I wanted to make sure it was preserved,” says Mycroft. “Five years later, when she had passed away and I went to clean out her office, I found the book. It was completely empty.”

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This Seattle writer wants to change how we talk to kids about death

Facing her own terminal diagnosis, a cookbook author pivots to recipes for coping with grief.

After being diagnosed with terminal brain cancer, Seattle cookbook author Caroline Wright turned her attention to writing children’s books addressing grief and death.

by Tom Keogh

Seattle-based cookbook author Caroline Wright can teach you how to make a salad for four with grilled escarole, peaches, prosciutto, mozzarella and basil oil.

She can show you how a sandwich of grilled manchego cheese and sausage on peasant bread is made in the style of a master chef from Catalonia. For dessert, she’ll tempt you with a wicked coconut-caramel cake with malted chocolate frosting.

But when the leftovers are wrapped and put away, Wright can also impart some hard-won wisdom: how to talk to kids about death.

Wright, who studied cuisine at a renowned cooking school in Burgundy, France, always wanted to write as much as develop her skills in a well-appointed kitchen. At age 23, she became a food editor at Martha Stewart Living, and later brought her crisp, engaging voice to her cookbooks, Twenty-Dollar, Twenty-Minute Meals, Cake Magic! and Catalan Food: Culture and Flavors from the Mediterranean (co-authored with Daniel Olivella).

She hasn’t stopped writing about food. But in 2017 she was diagnosed with a glioblastoma, an aggressive, rapidly growing brain tumor, similar to the one that killed Sen. John McCain. With the possibility of death looming large, Wright turned her prose toward facing her own mortality — and starting the conversation with her kids.

Luminous and voluble in person, Wright is a self-described, inveterate doer. When not writing or cooking, she’s pursuing photography or quilting or knitting. She can’t stop making things happen, whether it’s tinkering with recipes for her next cookbook, or organizing a panel discussion at Town Hall (Saturday, Nov. 9) on children and grief. The event will explore how we talk to kids about death, a topic with no simple bearings.

Wright has written two recent books on the theme of child bereavement, inspired by her and her husband Garth’s agonizing challenge of communicating with their young sons about Wright’s still-uncertain prognosis.

The Caring Bridge Project (which came out in February) is a collection of Wright’s online journal entries from her year of chemotherapy and radiation treatment. It’s part of Wright’s written legacy to her boys, Henry, 7, and Theodore, 4. But she intended it, too, for a broader readership: families facing similar experiences with children’s anxiety and despair over loss.

This past summer she published Lasting Love, a picture book for reading aloud to bereaved kids. The heartbreaking but emotionally affirming story, with comforting illustrations by Willow Heath, is about a dying mother returning home from the hospital with a formidable friend: a mighty, furry creature who will always remain by her child’s side, as both an avatar of her powerful love, and as a faithful companion who never judges grief in any form.

Halfway through the tale, the mother passes.

“The child would know,” says Wright of her decision to include the mother’s death. “So stepping around that seemed silly. I wanted the kid to be part of spreading her ashes.”

For Wright, there was no option but honesty. She knew her kids would watch her change, physically, during treatment, and they would find her less available. Keeping them in the dark — especially the older boy, Henry — would have been unfair. “The thing kids can’t rebound from is broken trust,” she says. “There’s no resolution for that.”

When she and Garth first talked with Henry about her cancer, and how she and her doctors were doing everything they could, but she might die anyway, there were tears. But Henry devised a helpful analogy:

“Mommy’s brain is a garden, and there’s a weed in it.”

“Henry and I have had amazing conversations, poetic and hard,” Wright says. “If I die, I want both boys to have a relationship with their memories of me. If I lied to them, it would sully that relationship.”

Thirty-two months after Wright was told she’d likely have 12 to 18 months to live, she is miraculously cancer-free, but vulnerable to a swift reemergence of the glioblastoma. If you take cancer out of the picture, she actually became healthier while fighting the disease, radically changing her diet, dropping 40 pounds and growing lean and strong through yoga, energy work and exercise.

Wright says the boys now occasionally bring up her cancer at random times. When Theodore recently saw her short hair wet and matted after a shower, he grew weepy, recalling her treatment-related baldness, and associating it with being away from him.

The profundity of loss, and the despondency of a child left without the constancy of a loved one’s care, makes Lasting Love a benevolent bridge between a parent and son or daughter going through these troubles.

“The theme of Lasting Love is, literally, love lasting forever,” Wright says. “That’s what we were telling Henry. That was the only piece of hope that we could give him: Mommy’s fighting very hard. And even if mommy dies, the connection you have with her is never going to go away. And there are many loving people surrounding you.”

Wright’s Town Hall event is part of her outreach mission to regional families and to nonprofits concerned with children and bereavement. Among them is Safe Crossings, which supports grieving kids of all ages, at little or no cost. Amy Thompson, program coordinator, will join the panel, along with therapists from other organizations.

Thompson says the field of grief counseling for early childhood through adolescence is growing because of a rise in traumatic losses: gun-related murders, opioid-overdose deaths and suicides. Grieving kids are often isolated, subject to bullying, and told to “get over it” by clueless adults.

“The message from society to grieving young people is ‘move on,’ ” Thompson says. “But if you’re intensely grieving for months or even years after a death, there’s nothing wrong with you. Loss changes over time. As children grow and reach new developmental milestones, they can better process the permanency of death, and we see them regrieve.”

The attention Wright and Lasting Love are receiving in therapy circles and in the media is helping to normalize grief in children — in everyone, really. When she learned she had beaten seemingly impossible odds and, while not out of the woods, is without cancer, Wright celebrated with her family by making a favorite cake, although with a few adjustments: it was sugar-free, gluten-free and covered in carob frosting instead of her once-beloved chocolate.

“I live with great respect for this thing that may happen to me again,” Wright says of the glioblastoma cells that might still be lurking in her brain. “But I don’t live in fear of it. There is nothing to be gained by that. I might die and I might not.”

But the bond between parent and child will last beyond death, she says. “Kids are resilient. With support, they will have full lives.”

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End-of-life doulas:

The professionals who guide dying people

Christy Marek is a certified end-of-life doula: she accompanies dying people and their families.

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Doulas are tasked with maintaining a sense of calm for dying people and those around them, and opening the conversation about death and loss, topics that can often be taboo

In October of 2016, Gregory Gelhorn ran the Twin Cities Marathon. Seven months later, he was diagnosed with ALS, a progressive neurodegenerative disease that causes nerve cells to break down, resulting in muscle weakness and atrophy. The average life expectancy of an ALS patient, once diagnosed, ranges from about two to five years. The cause of ALS is not fully understood, and no cure is known. Gelhorn was in his mid-40s.

“It was a shock,” said Kathy Fessler, Gelhorn’s sister. “He was always the one who took the best care of himself.”

Dying from ALS is a singularly awful experience; the disease causes the body to progressively deteriorate while the mind remains clear and lucid. Gelhorn had loved being active. He had played three sports in high school, coached girls’ basketball and served as a travel director at Lakeville North high school in Lakeville, Minnesota. The disease progressed rapidly; soon, he was using a wheelchair and relied on a BiPAP machine to breathe. Doctors estimated he only had a few months left. Gelhorn and his family – his two teenage children, wife, parents, and siblings – began to grieve.

In the midst of it all, Fessler happened to see an article in the Star Tribune about Christy Marek, a certified end-of-life doula who lived only a few miles away. Fessler contacted Marek, who soon took on Gelhorn as a patient.

A doula, typically, is a professional who helps mothers during pregnancy and childbirth. Unlike midwives, doulas do not serve in a medical capacity; rather, their primary role is to provide emotional, physical and psychological support.

The practice originated in the natural childbirth movement in the US in the 1970s, alongside the Lamaze method and the popularity of alternatives to hospital birth, like water birth and home birth. That same generation of Americans who were having children in the 70s are now approaching their twilight years, and the practice of serving as a doula has expanded in scope. End-of-life doulas use the same concept as birth doulas: they provide support for the dying.

“On all sorts of levels, I think the Baby Boomers, that generation has just been here to shake things up,” said Marek. “The natural birthing movement, they did that. And now it’s the same thing. They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”

End-of-life doulas are sometimes called death doulas, though many have reservations about the term.

“To me, end-of-life is a process,” said Marek. “The work I do with people isn’t just about that one point in time when somebody dies.”

Although doulas are not required to have medical training, many come from the healthcare field. Shelby Kirillin, an end-of-life doula based in Richmond, Virginia, has also been a neurointensive trauma nurse for over 20 years. It was her experiences in the neuro-ICU that led her towards becoming a doula. Many of the deaths she had seen there, she explained, struck her as cold, sterile and lonely.

“I just couldn’t imagine that the person dying had ever envisioned their death to be like that,” she said. “Dying isn’t just medical. It’s spiritual.”

Fascinated by the idea of a structured approach to end-of-life care that prioritized the individual wishes of the dying, Kirillin enrolled in a doula training course with the International End of Life Doula Association (Inelda), a not-for-profit that promotes the approach. Although there is no centralized regulatory body for doulas, training and certification programs are offered by a number of organizations, including Inelda and the Larner College of Medicine at the University of Vermont.
“There’s so much fear and anxiety about death,” said Janie Rakow, the president of Inelda. “The doulas are there to calm everyone down. They work with the dying and their families to educate, to explain what’s happening. That what they’re seeing is part of the dying process.”

Rakow and her business partner, hospice social worker Henry Fersko-Weiss, founded Inelda in 2015 to train doulas and promote their use in hospices, hospitals, prisons and homeless shelters. Their training program covers topics like vigil planning, active listening and doula self-care.

Part of what doulas do is open the conversation about death and loss, topics that can often be taboo or deeply uncomfortable for the dying or their family.

“Can you imagine if a woman was going through labor and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death,” said Kirillin. “You have to talk about it. You’re dying and you’re no longer going to be here.”

Doulas help their patients plan out their deaths: talking with them about their wishes, and how they would like to spend their last day. Some prefer to die in a hospital, others at home. They decide who they want around them, whether it’s with all their family and friends, or a religious figure, or alone. They choose the details of the setting, whether they want to hear music, whether they want to have someone hold their hand, and what rituals – religious or secular – they want performed.

Doulas often also perform legacy work, the practice of guiding the dying to create tangible artifacts to leave behind for their loved ones. Sometimes, it’s a photo album, a collection of recipes, or a video archive. One of Rakow’s patients wrote a series of letters to her pregnant daughter’s unborn child, expressing her hopes and wishes for a granddaughter she knew she would never meet.

As death approaches, doulas are tasked with maintaining a sense of calm for dying people and those around them.

“One of my patients this past spring, as he was transitioning, he started to vomit,” said Kirillin. “I reminded everyone that when a woman is laboring a birth, sometimes she vomits. It’s the body’s natural way. Let’s just make him comfortable.”

Finally, the last part of a doula’s work comes a few weeks afterwards, when the doula meets with the deceased’s loved ones to reprocess and discuss everything that has occurred.

“It’s after the casserole brigade has come and gone, and everyone’s gone back to work,” Kirillin said. “We talk about grief and bereavement. You’re not going crazy. You can be happy and sad in the same moment. There is no timeline.”

Of course, the practice of guiding the dying on their final journey is not new. Death is not an unknown phenomenon, and the act of tending to the dying has existed as long as human civilization itself. Marek has a theory for why the need for a formalized approach to death has manifested now, in these particular circumstances – why the dying feel the need to contract a trained professional, rather than being able to rely on a more organic source of support.

“In America, a few generations ago, our communities were doing this work,” she said. “The reason the role is showing up in a formalized way now is that we don’t have those community ties any more, not in the same way, and certainly not the same level of responsibility to each other as used to be woven into our communities.”

Kirillin agreed: “I would love for our culture to never need me,” she said.

Much of doula work is the very definition of emotional labor, and though Janie Rakow suspects some doulas feel conflicted about taking money for their services, she sees the profession as no different from that of therapists or hospice workers.

“I had one of my patients tell me I wasn’t charging them enough,” she said, though Inelda also encourages pro bono work, and many doulas serve purely on a volunteer basis. She also cautions her doulas not to take on too many cases in a row, and to be cognizant of their own mental health. But, she said, the act of tending to the dying is not as depressing as many assume; rather, it can be very rewarding.

“When you sit with a dying person and they take their last breath, it is as amazing and awe-inspiring as someone taking their first,” said Kirillin. “It is important, and sad, and needs to be cherished.”

Gregory Gelhorn died in September 2018. He spent his last day in his home, surrounded by his family. Together, they watched a movie and listened to 90s prog-rock.

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Finding Meaning in Grief

Grief expert David Kessler wrote a new book while grieving the loss of his son

In David Kessler’s latest book, Finding Meaning: The Sixth Stage of Grief (Simon and Schuster), he writes: We want to find meaning. Loss can wound and paralyze. It can hang over us for years. But finding meaning in loss empowers us to find a path forward.

By Julie Pfitzinger

For Kessler, a noted grief expert,  finding a path forward became an unexpected and integral part of his life.  While Kessler was writing this book,  his son David, who had overcome a drug habit only to start using again, died in 2016 at the age of 21.

The founder of Grief.com, Kessler, 60, spent several years working with the late psychiatrist Elisabeth Kübler-Ross (author of the groundbreaking On Death and Dying) and co-authored two books with her.

“Our grief is as unique as our fingerprint. We all have different backgrounds of love, and we all approach grief in our own ways.”

Additionally, Kessler, who lives in Los Angeles, has counseled countless individuals, led workshops and delivered presentations throughout his long career. He is a trained thanatologist (someone who studies death and dying) and has been onsite at crime scenes, plane crashes and other traumatic events to help grieving loved ones. Kessler also lost his mother at age 13, and because he was under 14, was prevented from being in her hospital room with her at the end of her life.

Next Avenue talked with Kessler about facing loss and finding meaning in, as he says, “a grief-illiterate society.”

Next Avenue: People in grief often ask you where they are supposed to find meaning in a loss. Where are some of those places?

David Kessler

David Kessler: I think that meaning is everywhere, just waiting to be found. We can find meaning in how [our loved ones’] lives touched ours. There is meaning in how we’re changed by their lives, and how we changed theirs.

In your work as a grief counselor, you tell people their grief won’t get ‘smaller’ over time, but they must get ‘bigger.’ How does that happen?

When people ask me ‘How long will I grieve?’ I respond by asking them, ‘How long will your loved one be dead?’ We can’t change the pain, but we can build a meaningful life around that pain.

Think of the memories you have of your parents or your grandparents, that live with you and that you can share with your children and with your grandchildren. That is the growth that can come from pain.

In our culture, we talk so much about Post Traumatic Stress Disorder, but we should talk about Post Traumatic Stress Growth. It’s after loss that growth is possible.

In today’s world, you say grief has been ‘minimized and sanitized.’ Why is it such a struggle to bear witness to someone’s pain? How can we be present when people we know are grieving?

Our generation is probably one of the last generations that remembers when death was part of life. I remember as a boy riding in the car, and seeing a hearse driving down the street ahead of us. Our grandparents may have died at home, now death generally happens in a hospital.

We are a grief-illiterate society. We are also a society that wants to ‘fix’ everything. When someone is grieving, they aren’t broken. They don’t need to be fixed. They need someone to sit with them in their pain and to witness their grief. In some ways, I’m teaching the lessons of our great-grandparents, who did those things when someone died.

Some people skip funerals because they are afraid of facing pain or remembering their own losses. If you are a person whose friend didn’t attend the funeral of your loved one, how do you move forward in that relationship?

First of all, I really encourage people to attend funerals. It’s important. However, if you have a friend who didn’t attend a funeral for someone you loved, know that it wasn’t about you. It wasn’t a statement about your friendship. It was a statement about their own pain. They didn’t do it to you — they just did it.

If you’ve had a friendship for twenty years, forgive them because of that twenty years.

You talk about the difference between private and public grief. Can you explain this?

Our grief is as unique as our fingerprint. We all have different backgrounds of love, and we all approach grief in our own ways.

In our generation, we were taught to be stoic. Think of the example of Jacqueline Kennedy, who didn’t cry publicly after JFK’s assassination. People said, ‘That’s what strong grief looks like.’ But she was later quoted as saying, ‘That was the First Lady grieving.’ Of course she cried in private.

We all act differently in public. Some people cry with friends, but some only cry alone.

Quoting Elisabeth Kübler-Ross, you say that people can be left with ‘unfinished business’ when someone from whom they have been estranged dies. How can they make peace with that?

We have to accept who they were, and the role they played in this lifetime. I always say it takes two people to tango — it wasn’t all you, and it wasn’t all them.

I believe that if you ask forgiveness sincerely in your heart, the person who is gone will feel it sincerely in theirs. A lot of people report that they have better relationships with people in death than they did in life.

While you do touch on the death of your son David at various points in the book, it isn’t until the end, in a chapter called ‘Everything Has Changed Forever,’ where you tell the story of his death and the days following. Why did you decide to talk about your personal experience of grief at the end of the book rather than at the beginning?

This isn’t a memoir, or a book about my grief. My grief is just one example; the book has many stories from other people about their grief.

A month after David died, a forty-three-year-old friend of mine died of the flu. Another friend lost their beloved dog not long after that. When I offered consolation, people said, ‘Your grief is worse than mine,’ but that’s not true. All tears count. The worst grief is always yours.

How are you finding meaning?

Elisabeth Kübler-Ross never intended for the five stages of grief to be linear. They don’t prescribe how you are supposed to grieve, they describe how you are supposed to grieve. As I write in the book, my work isn’t about my son’s death, but his death has deepened my work. And finding meaning is not extraordinary, it’s ordinary. Grief is not about pain. It’s about love.

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