Month: January 2022

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9 Myths About the Stages of Grief

By Elizabeth Beasley

Ever since Dr. Elisabeth Kübler-Ross’s book “On Death and Dying” hit the shelves in 1969, it’s been a key source of information about the grief process. Dr. Kübler-Ross outlines five stages of grief that many people go through: denial and isolation, anger, bargaining, depression, and acceptance. But her theory was geared towards people who were in an end-of-life situation and facing imminent death. Also, she never intended the stages to be a linear timeline. Though her model is helpful for understanding grief, it has created myths about the stages of grief that don’t ring true for everyone.

Myth 1: There’s a clear timeline for grieving. 

“On Death and Dying” lists five stages of grieving, but there’s no real timeline for the process. Grief is a very personal experience and most people go through it in whatever way helps them the most. You may stay in one phase longer than others, bounce back and forth between phases, skip a phase, or have phases that are uniquely your own.

The grief experience is complex and, while the five phases are a guideline, it is perfectly normal to grieve in a completely different pattern. That’s why many researchers and clinicians quit using the term “stages” when talking about grief.

Myth 2: Mourning and grief are the same thing.

This might surprise you, but they’re actually different. The definition of grief refers to the emotional state you experience when you’ve lost someone or something. Those emotions include a wide range of feelings from numbness to pain. Mourning is defined as the way you express your grief and the actions you take as you go through the grieving process. A good example of mourning is wearing black, bringing flowers to a gravesite, or following specific traditions of bereavement. Most people experience both grieving and mourning.

Myth 3: The grief process is the same for everyone.

When it comes to grieving, and even mourning, there are a lot of societal and cultural expectations about how to do it correctly. But every person is as unique as their grief process and will think, feel and act differently. Know that there is no correct way to cope with a loss. If you can find a way to grieve while feeling supported, rested, healthy, and authentic, then you are doing a great job. It won’t always be easy, but it’ll be the way you need it to be.

Myth 4: Ignoring your grief helps it go away faster.

When you’re experiencing a loss, it can be tempting to stay busy and distracted. This can lead to a pattern of avoidance that keeps you from feeling your emotions and healing. Grief is emotional trauma and, like physical trauma, it’s important to acknowledge the pain and treat it.

In some cases, ignoring grief may lead people to numb their pain with substance abuse, which can cause more pain. Of course, there will be times you’ll want to take your mind off your experience. Try to find support that lets you balance some breaks with fully experiencing your grief.

Myth 5: Crying is necessary for grieving.

We grow up learning that crying is a normal response to sadness, but it’s not the only way to show you’re sad. People who don’t cry over a loss can be experiencing just as much grief as those who do. Keep in mind that feeling numb or being in a state of shock is also a common grief response. This may prevent people from expressing their emotions with tears. Crying can help you process the pain of grief, but you can still work through it without shedding a tear.

Myth 6: The first year is the toughest.

This myth is common, because it is somewhat true. The most intense emotions related to the grief process often happen in the first year. However, every year and anniversary after that may still be difficult. Remember, there is no timeline for grieving. If you are grieving or know someone who is, be open to unexpected emotions at unexpected times and don’t expect the grief process to suddenly be over. Also, remember that support groups are always available and you can get counseling services at any time, even years after your loss.

Myth 7: Grief will eventually go away.

Time does not heal all wounds, especially the wounds of grief and loss. The intensity of your grief may decrease with time, but you may never forget it or feel truly healed. Grief ebbs and flows and can continue for a lifetime. When you prepare for it to last, you may be more at ease expressing your feelings in your own way as they come and go, rather than trying to suppress or stop them. It’s also helpful to know what makes you feel better when grief shows up, so you can get the support you need.

Myth 8: The goal of grieving is closure.

Our society is built around achievement. Common milestones include graduating from school, getting married, and retiring from a career. We like to check things off the list, but closure isn’t the goal of grief. Finishing grieving is not the endgame and there is no finish line. Some say the main objective of the grieving process is to experience your feelings of loss, sadness, anger, and guilt, while taking care of yourself and continuing to live and move ahead. Keeping an open mind about grief will serve you better than looking for closure.

Myth 9: Grief affects females more intensely.

The process of grieving has taken on a lot of expectations from society, including stereotypical views of how females and males grieve. Society expects females to be more emotional, to openly grieve through crying and expressing their feelings. “Boys don’t cry” is a stereotype that keeps males from showing their sadness through tears and emotions. The truth is that every person is unique and should freely cry or not cry or show grief in their own way. No one grieves more than anyone else. We are all individual beings with individual grieving styles.

Complete Article ↪HERE↩!

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How I helped my mother to have a good death from afar

Due to the COVID-19 pandemic, Melbourne man V Srikanth had to support his mother in India from afar as she neared the end of her life. This is what he learned.

By V Srikanth

And so when I got the call from my brother-in-law at 4 o’clock on a Thursday afternoon to let us know she had suffered a serious stroke, my brain snapped into clinical gear fairly quickly.

I was in Australia and she was near Bengaluru, and so began the very strange experience of helping my mother through her illness and to have a good death from afar in the middle of a global pandemic.

I was in Australia and she was near Bengaluru, and so began the very strange experience of helping my mother through her illness and to have a good death from afar.

I come from a medical family. I trained to be a physician and a geriatrician and I think I can make very clear decisions. My father, my sister, my brother and my brother-in-law are all doctors too. However, even for us there were many difficult decisions to be made. There were points where we were second-guessing ourselves and questioned whether we were doing the right thing.

In my job I have seen dozens of advanced-care plans. They are a good thing. But even the best advanced-care plans come unstuck. People’s wishes may not always be communicated well, and many families struggle with letting their loved ones go. Some want everything to be done until the very end, but what ‘everything’ is, might be viewed differently by different people. You can’t apply the same advanced-care plan to every scenario. 

Early on my mother briefly regained some consciousness, but shortly thereafter she slipped back into an unconscious state.

I had seen the brain scans, I knew the odds. Neurosurgery was an option, but the likelihood of her surviving it and recovering to live an active life with good quality was extremely low. And Amma was in a large hospital in the middle of the Covid crisis.

My siblings and I decided it would be best to get our mother out of that hospital environment. We were fortunate in that we knew of a small primary care facility where she could have access to nurses and a physician.

What many people don’t know is that a formal system of palliative care is rare in India and is not routinely incorporated into healthcare. In fact, the medications that we use in Australia for palliative care like sedatives and opiates are very tightly regulated in India and not readily available for good palliative care.

I was lucky enough to be able to speak with my colleagues here about the best practices we might use, even if those best practices were not known in India, and provide my siblings with advice. However, we still all had to be on the same page and that is always the tricky part.

When would we stop providing food through a tube? When would we stop giving intravenous fluids? What is the right amount of care to keep someone comfortable but also allow them to die?

If you don’t know about palliative care and have not talked about death, these decisions can be challenging. And they are made harder when you don’t know the patient’s wishes or have a desire to ‘fix’ everything with every option of treatment available, however futile they may be.

With my family it was different. We were in agreement on most things and for the most part we knew what our mother would have wanted us to do. She had held separate conversations with all of us about what she would have expected for herself. And my father, tough as it was for him, also accepted the reality of how Amma was – and trusted us to help him make the right decisions.

And this is what I would say to anyone going through a similar situation. Ask yourself, to the best of your knowledge, how would your relative have wanted to live on the other side of a significant medical intervention when faced with a seriously disabling or terminal illness? Ask the doctors what are all the options and what are the specific likely outcomes of each?

When the time came for my mother it was extremely peaceful, with my family by her side, and no discomfort. She would have been 80 this year, a wonderful person and she was really clear in her mind, always keeping people connected. In many ways, as she always did, she made it easier for us at the end.

Complete Article ↪HERE↩!

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When a friend dies by suicide

— Preventing suicide contagion

A friend or classmate’s suicide can increase risk for whose who are emotionally vulnerable or see suicide as a way to solve problems.

by

Suicide can shake an entire community. For some kids, a friend or classmate’s suicide increases the risk that they may resort to the same behavior. This risk, known as suicide contagion, can affect people who lived down the street from the person who died, went to school with them, or simply saw them around town.

“After suicide, the person’s closest friends aren’t necessarily the ones at greatest risk,” says Kimberly O’Brien, clinical social worker in the Department of Psychiatry and Behavioral Sciences at Boston Children’s Hospital. “The kids at greatest risk are the ones who are already emotionally vulnerable and those who believe their classmate solved their problems through suicide.” O’Brien is also co-author of Emotionally Naked: A Teacher’s Guide to Preventing Suicide and Recognizing Students at Risk with Anne Moss Rogers.

Here, O’Brien and Boston Children’s psychologist Erica Lee talk about how a classmate’s suicide can affect children and teens and ways parents can help their kids process their feelings.

Risk of contagion in the aftermath of suicide

Any death, particularly a death by suicide, brings up a wide range of feelings: shock, sorrow, anger, and guilt, to name a few. While there’s no right or wrong way to feel, some kids are more vulnerable to suicide contagion than others. “If a kid is already struggling with depression, anxiety, or suicidal thoughts, a classmate’s suicide can exacerbate those thoughts and feelings,” says Lee.

The way people talk about suicide can also increase other students’ risk. For instance, the more details about how the person took their life are made public, the greater the risk that other students may engage in similar behavior.

To reduce such risk, parents and school officials can take a cue from the news media’s suicide reporting guidelines. The voluntary guidelines aim to reduce the chance of suicide contagion by:

  • not focusing on the method or location of suicide
  • not speculating what event or person may have triggered the suicide
  • not suggesting suicide is an understandable response to difficult feelings

This is not to say that parents should try to gloss over a classmate’s death. “Parents should not try to keep the suicide a secret from their kids,” says O’Brien. “You don’t want to focus on the method of death, but don’t take away from the loss of this person by not doing or saying anything.”

Self-care for parents in the wake of suicide

It’s only natural for parents to have a strong reaction when a child dies by suicide. Ignoring such emotions in an effort to appear strong can backfire. “Kids often monitor their parents for signs of distress,” says Lee. “If they think their parent is upset, they might hide their thoughts and feelings rather than upset their parent more.”

Taking time to process their emotions also gives parents a chance to think about what they want to say and how they want to say it, adds Lee. “The conversation may be hard to have, but approaching it in a calm, open frame of mind can reassure your child you will work through this together.”

Open communication to reduce kids’ risk of suicide

O’Brien suggests that parents check in frequently with their child after a classmate’s death by suicide. “A kid might feel fine one day, then it may hit them the next day.” Conversations should leave room for children to explore their feelings about the person who died, suicide, and their own experiences.

Open communication also includes asking kids if they have suicidal thoughts. “Many parents worry that asking a child if they think about harming themself may ‘plant’ the idea in their mind,” says Lee. It doesn’t. By asking the question, parents let children know it’s OK to talk about scary feelings.

Tips for talking with tweens and teens about the death of a classmate by suicide

  • Use clear, straightforward language and leave plenty of room for your child to express their thoughts and feelings.
  • Open the conversation with questions. For instance, ‘What have you heard about what happened?’ and ‘How are you feeling about what happened?’
  • Focus on the fact that the person who died had a psychiatric illness that made it hard for them to think clearly.
  • Avoid judging the person who died or the people close to them. No single event causes suicide.
  • Be ready to hear what your child is thinking and feeling. Remember, everyone responds differently to suicide.
  • Offer reassurance. Most people with suicidal thoughts get support that helps them find other ways to cope with emotional pain.

If your child tells you they think about harming themself, feel hopeless, or is in overwhelming emotional pain, seek help from a mental health professional. If you believe your child is in immediate danger, call 911 or bring your child to the closest emergency room.

Honoring the person who died

Grieving after suicide can be complicated. “It’s important that kids have a way to honor their friend or classmate without reinforcing the idea that dying is a way to gain attention or love,” says Lee.

“To reduce other students’ risk, the emphasis should be on suicide prevention,” adds O’Brien. She suggests working with an organization like the American Foundation for Suicide Prevention to help raise awareness about suicide. Kids can also participate in a fundraiser like an Out of the Darkness Walk or volunteer for a crisis hotline. Any of these activities can help kids acknowledge a classmate’s death while learning about suicide prevention.

If you or your child is in crisis, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255), or contact the Crisis Text Line by texting HOME to 741741.

Complete Article ↪HERE↩!

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Is It Time to Rethink End-of-Life Decisions and Care?

By Judith Graham
For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill — living wills, do-not-resuscitate orders, and other written materials expressing treatment preferences.

Now, a group of prominent experts is saying those efforts should stop because they haven’t improved end-of-life care.

“Decades of research demonstrate advance care planning doesn’t work. We need a new paradigm,” said Dr. R. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York and a co-author of a recent opinion piece advancing this argument in JAMA.

“A great deal of time, effort, money, blood, sweat and tears have gone into increasing the prevalence of advance care planning, but the evidence is clear: It doesn’t achieve the results that we hoped it would,” said Dr. Diane Meier, founder of the Center to Advance Palliative Care, a professor at Mount Sinai and co-author of the opinion piece. Notably, advance care planning has not been shown to ensure that people receive care consistent with their stated preferences — a major objective.

“We’re saying stop trying to anticipate the care you might want in hypothetical future scenarios,” said Dr. James Tulsky, who is chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute in Boston and collaborated on the article. “Many highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won’t.”

The reasons are varied and documented in dozens of research studies: People’s preferences change as their health status shifts; forms offer vague and sometimes conflicting goals for end-of-life care; families, surrogates and clinicians often disagree with a patient’s stated preferences; documents aren’t readily available when decisions need to be made; and services that could support a patient’s wishes — such as receiving treatment at home — simply aren’t available.

But this critique of advance care planning is highly controversial and has received considerable pushback.

Advance care planning has evolved significantly in the past decade and the focus today is on conversations between patients and clinicians about patients’ goals and values, not about completing documents, said Dr. Rebecca Sudore, a professor of geriatrics and director of the Innovation and Implementation Center in Aging and Palliative Care at the University of California-San Francisco. This progress shouldn’t be discounted, she said.

Also, anticipating what people want at the end of their lives is no longer the primary objective. Instead, helping people make complicated decisions when they become seriously ill has become an increasingly important priority.

When people with serious illnesses have conversations of this kind, “our research shows they experience less anxiety, more control over their care, are better prepared for the future, and are better able to communicate with their families and clinicians,” said Dr. Jo Paladino, associate director of research and implementation for the Serious Illness Care Program at Ariadne Labs, a research partnership between Harvard and Brigham and Women’s Hospital in Boston.

Advance care planning “may not be helpful for making specific treatment decisions or guiding future care for most of us, but it can bring us peace of mind and help prepare us for making those decisions when the time comes,” said Dr. J. Randall Curtis, 61, director of the Cambia Palliative Care Center of Excellence at the University of Washington.

Curtis and I communicated by email because he can no longer speak easily after being diagnosed with amyotrophic lateral sclerosis, an incurable neurologic condition, early in 2021. Since his diagnosis, Curtis has had numerous conversations about his goals, values and wishes for the future with his wife and palliative care specialists.

“I have not made very many specific decisions yet, but I feel like these discussions bring me comfort and prepare me for making decisions later,” he told me. Assessments of advance care planning’s effectiveness should take into account these deeply meaningful “unmeasurable benefits,” Curtis wrote recently in JAMA in a piece about his experiences.

The emphasis on documenting end-of-life wishes dates to a seminal legal case, Cruzan v. Director, Missouri Department of Health, decided by the Supreme Court in June 1990. Nancy Cruzan was 25 when her car skidded off a highway and she sustained a severe brain injury that left her permanently unconscious. After several years, her parents petitioned to have her feeding tube removed. The hospital refused. In a 5-4 decision, the Supreme Court upheld the hospital’s right to do so, citing the need for “clear and convincing evidence” of an incapacitated person’s wishes.

Later that year, Congress passed the Patient Self-Determination Act, which requires hospitals, nursing homes, home health agencies, health maintenance organizations and hospices to ask whether a person has a written “advance directive” and, if so, to follow those directives to the extent possible. These documents are meant to go into effect when someone is terminally ill and has lost the capacity to make decisions.

But too often this became a “check-box” exercise, unaccompanied by in-depth discussions about a patient’s prognosis, the ways that future medical decisions might affect a patient’s quality of life, and without a realistic plan for implementing a patient’s wishes, said Meier, of Mount Sinai.

She noted that only 37% of adults have completed written advance directives — in her view, a sign of uncertainty about their value.

Other problems can compromise the usefulness of these documents. A patient’s preferences may be inconsistent or difficult to apply in real-life situations, leaving medical providers without clear guidance, said Dr. Scott Halpern, a professor at the University of Pennsylvania Perelman School of Medicine who studies end-of-life and palliative care.

For instance, an older woman may indicate she wants to live as long as possible and yet also avoid pain and suffering. Or an older man may state a clear preference for refusing mechanical ventilation but leave open the question of whether other types of breathing support are acceptable.

“Rather than asking patients to make decisions about hypothetical scenarios in the future, we should be focused on helping them make difficult decisions in the moment,” when actual medical circumstances require attention, said Morrison, of Mount Sinai.

Also, determining when the end of life is at hand and when treatment might postpone that eventuality can be difficult.

Morrison spoke of his alarm early in the pandemic when older adults with covid-19 would go to emergency rooms and medical providers would implement their advance directives (for instance, no CPR or mechanical ventilation) because of an assumption that the virus was “universally fatal” to seniors. He said he and his colleagues witnessed this happen repeatedly.

“What didn’t happen was an informed conversation about the likely outcome of developing covid and the possibilities of recovery,” even though most older adults ended up surviving, he said.

For all the controversy over written directives, there is strong support among experts for another component of advance care planning — naming a health care surrogate or proxy to make decisions on your behalf should you become incapacitated. Typically, this involves filling out a health care power-of-attorney form.

“This won’t always be your spouse or your child or another family member: It should be someone you trust to do the right thing for you in difficult circumstances,” said Tulsky, who co-chairs a roundtable on care for people with serious illnesses for the National Academies of Sciences, Engineering and Medicine.

“Talk to your surrogate about what matters most to you,” he urged, and update that person whenever your circumstances or preferences change.

Most people want their surrogates to be able to respond to unforeseen circumstances and have leeway in decision-making while respecting their core goals and values, Sudore said.

Among tools that can help patients and families are Sudore’s Prepare for Your Care program; materials from the Conversation Project, Respecting Choices and Caring Conversations; and videos about health care decisions at ACP Decisions.

The Centers for Disease Control and Prevention also has a comprehensive list of resources.

Complete Article ↪HERE↩!

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The poetic elegies that can help us make space for our pandemic grief

Elegy performs an essential caretaking, both intimate and public, of our dead.

Claudette Donlon attends a memorial service at Washington National Cathedral on Jan. 19. Some of Donlon’s friends have died of covid-19.

By David Sherman and Karen Elizabeth Bishop

The grinding work of pandemic survival leaves few moments to reckon with the significance of our catastrophic losses. The scale of death from the coronavirus — 5.4 million, more than 800,000 of them in the United States, and counting — baffles understanding and eclipses feeling. But a society survives such devastation only by creating shared spaces and open time for mourning. How do we begin to acknowledge so many dead? What cultural forms and expressive practices can bear these absent lives with us into the future?

Elegy is where we figure out how to do this work. Elegiac poetry helps us hold vigil over the dying and bear the dead to a resting place. The form has long offered symbolic versions of these defining human acts, surrogate ways to fulfill existential obligations when we are rendered passive and mute by another’s death. Whitman’s “When Lilacs Last in the Dooryard Bloom’d,” shared in so many classrooms and anthologies, still resonates for the way the poet risks the unanswerable questions at the jagged heart of elegy: “O how shall I warble myself for the dead one there I loved? / And how shall I deck my song for the large sweet soul that has gone?”

Whitman wrote these lines for a slain president and a nation devastated by civil war. In a pandemic, when a flood of statistics threatens to swallow the singularity of every death, contemporary elegies — about the dead, for the dead, in place of the dead — offer us new ways for our grief to work its way past silence. Elegy performs an essential caretaking, both intimate and public, of our dead. Poetry is a labor of survival.

At the beginning of the pandemic, our most established mortuary and memorial practices were in lockdown. Funerals were forbidden and mourners had no way to gather in person, as farewell rituals collapsed into screens. The anguished poetry of that moment tried to work through this dreadful impasse. Nick Laird’s “Up Late,” an elegy to his father, who died of covid-19, describes the sudden, otherworldly alienation of pandemic dying: “This morning / the consultant said your father now is clawing / at the mask and is exhausted and we’ve thrown / everything we have at this. It’s a terrible disease. … // Dad, / you poor bastard, I see you. / You lay like that for a week alone / with your thoughts in the room. // Tethered. Breathless. Undefended. / At sea as on an ice floe / slipping down into the shipping channels.” As touch is impossible, Laird labors to make sure his father is seen and his death de-sequestered. The poem struggles with how to be present from a distance, how to witness the ravages of the pandemic from the inside out. In this final gift of elegy, his father is isolated, but not alone, as he drifts into death’s cold waters.

In recent seasons, many have tried to acknowledge the pandemic dead in inventive memorial forms: empty chairs in D.C. and Tennessee; flags in Austin and on the National Mall; prayer flags and cairns and quilts in Massachusetts; origami cranes in Los Angeles; and freshly planted groves of native trees in Ohio. But where memorials, however elegantly conceived and assembled, function only in situ, elegy offers an alternative: a text that is easy to access, reproduce, circulate and share. Whether spoken or written, elegy leverages that most intimate, visceral and spontaneous mechanism of expression: the human voice.

Contemporary elegy, like love poetry, seeks to tell something very old and repetitive — I miss you, where are you, why were you lost among so many spared — without cliche. Each death uniquely rends our shared world; the shock of innovative elegiac form captures the specific incompleteness of being in the wake of another’s death, telling how this death and this grief matter. “In the night I brush / my teeth with a razor”: This distich — an old elegiac form renovated here by Kevin Young — is the entirety of his poem “Grief.” It jolts us awake to confront a terrible void by coupling daily routine with violence. Just as a blade might threaten the nerves protected within teeth, his image cuts through familiar language to expose raw grief. In the same volume, “Book of Hours,” we come to the oddly musical line: “I wish to wash / my face in the furnace.” Such soothing alliteration and assonance, laid out in iambic pentameter, delivers us without warning to the terrifying catharsis of a cleansing by fire. Where elegy wounds in image and sound and figurative device, it also houses the impossible strangeness of grief so that we survive it.

Many poets use elegy to tell the dead about their own passing, as if they might help us make sense of their absence and our own, now uncanny, survival. “I was asleep while you were dying. / It’s as if you slipped through some rift, a hollow / I make between my slumber and my waking,” Natasha Trethewey explains to her dead mother in “Myth.” Trethewey addresses her mother directly, seeks to summon her with just the right images, rhythms, and pitches of longing. For a moment we meet in a fertile borderland between being and nonbeing, or a time zone between is and was. We inhabit this space alongside the poet; elegy is a practice of addressing the dead so that others can overhear. Trethewey’s address to her mother is also to us, and eventually to herself, in a circuit that offers company for grief’s isolation.

Elegy, like other commemorative practices, often strains between individual and collective voice amid widespread trauma and social crisis. Mass death requires a different language to grapple with loss, fracturing traditional elegy as poets seek to chronicle many interrupted lives. Kim Hyesoon’s astonishing book “Autobiography of Death,” translated by Don Mee Choi, responds to the April 2014 Sewol ferry disaster, in which hundreds of schoolchildren drowned off the coast of South Korea in view of a horrified nation. Hyesoon hallucinates impossible rites of commemoration: “a four-ton bronze bell with a thousand names of the dead engraved on it dangles from the helicopter / The helicopter flies over a tall mountain to hang the bell at a temple hidden deep in the mountains,” or “A thousand masks float on the thousand rivers of the north, south, east, west.”

In these poems, the 304 people killed in the disaster become thousands of names, masks, and rivers because their loss is incalculable, beyond account. Each death, for Hyesoon, is multiplied by injustice and official negligence so that it becomes many deaths, intolerable and beyond repair. Her imagination inscribes the sky, water and land with their absence, remaking and remapping the world in their wake. Her poetry teaches us about the combination of imagination and courage we need to create commemorative spaces for the millions who have died, and are dying, of covid.

Elegy modulates collective anguish into form and meaning. In “The Man with Night Sweats,” poems written in response to the AIDS epidemic in the 1980s, Thom Gunn imagines lives vanishing on a wide scale, and in intricate entanglement: “Contact of friend led to another friend, / Supple entwinement through the living mass / Which for all that I knew might have no end, / Image of an unlimited embrace.” For Gunn, the living mass names our basic existential solidarity, the far-reaching interdependence of human lives.

“The Missing” goes on to explore a sense of mutual implication in others’ illness, a shared exposure that speaks clearly to the present: “But death — Their deaths have left me less defined: / It was their pulsing presence made me clear. / I borrowed from it, I was unconfined, / Who tonight balance unsupported here.” Gunn searches an ambiguity in survival, because every survival is temporary. It is hard to ignore, against these measured verses, the pressure of the shadow-word “uncoffined” for “unconfined,” as if the speaker has returned from his own burial to speak here also for himself. In a posthumous undertone, Gunn speaks with the dead. Elegiac language is a territory that the living and dead inhabit together. Four decades later, we need to reclaim this lyric territory.

Elegy does not change the fact of death. It is just poetry, as frail as the breath that utters it and a confirmation of our own precarity. As Joy Harjo tells us in “Death Is a Woman,” “I have nothing to prove your fierce life, except paper / that turns back to dust.” But somehow we are stronger in both knowing that the terms of death are nonnegotiable and still insisting, on the page and in our voice, on negotiation. The mind imagines tactics; the voice tries out its claims. This work is ours to do. Poetry helps us gather the remains of the dead, even across great distance, and offer them a place. Elegy makes our dead, sheltered from the weather, sound.

Complete Article ↪HERE↩!

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How to Be the Caregiver From Hell (When Necessary)

The ‘Health Your Self’ author’s advice on how to help your loved one get the best care

By Janice M. Horowitz

When the nurses were a few moments late giving Aurora Greenway’s daughter, Emma, pain medication for cancer in the 1983 film classic, “Terms of Endearment,” Aurora (played by Shirley MacLaine) let them have it. “My daughter is in pain! Give her the shot!”, she belted out in an unforgettable fist-banging, gyrating fury.

And then, scaling to the top of her lungs: GIVE MY DAUGHTER THE SHOT! At that moment, she became the caregiver from hell.

I’ve been that kind of caregiver myself — and I encourage you to do the same when necessary, although it’s best to tone down the histrionics.

Caregiver From Hell: Part 1

My first time going (nearly) full Aurora was in 2016 when I took my then 90-year-old mother Estelle to the ER for a severe allergic reaction that caused her lips and tongue to swell so enormously I thought her airways would be compromised. 

I started screaming, threatening at 2 a.m. to call the chief resident, while dialing my mother’s well-regarded cardiologist.

It was July, a time of year when the new medical residents begin working. One of them gave my mother a shot of epinephrine, a powerful adrenaline medication known to bring down swelling — but which could have killed her.

Epinephrine punches up the heart rate, something my mother with her poorly functioning heart valve could not afford.

Repercussions for her heart would have happened quickly, so I relaxed for a moment, but then saw the newbie about to administer Round Two. I started screaming, threatening at 2 a.m. to call the chief resident, while dialing my mother’s well-regarded cardiologist. I told them I simply would not let the new resident and the rest of the team do this.

I shouted that I would sign a waiver. I even offered my own idea of what to administer instead, prednisone, a well-known anti-inflammatory. Whatever it took.

And then, probably fed up, they stopped.

The doctors admitted my mother for a night for observation. I was so concerned they’d try this dangerous stunt again that I sat in a chair by my mother’s bed all night. They even administered the prednisone I suggested (proud of myself). She went home the next day.

Caregiver From Hell: Part 2

Years later, I ramped up my Caregiver From Hell character again for my 15-year-old daughter Anna when both of us were in the ER after a car accident. This time I couldn’t scream. The airbag released during the crash had broken my sternum, and just breathing was painful.

So, I whisper-growled insistence from the gurney. At times, I pleaded.

The trauma team in the pediatric wing of the ER had wanted to give my daughter a CT scan (a medical imaging technique using X-rays) for what seemed to be a minor injury to her neck. I had just finished writing, literally at 4:30 p.m. that afternoon, a chapter about the potential perils of unnecessary CT scans for my book “Health Your Self” (which Next Avenue excerpted in “Should I Get That CT Scan?”)

Radiation from CT scans can be hundreds of times that of conventional X-rays. Cancer can take 20 or more years to develop if DNA gets irreparably damaged, so kids, with their long life still in front of them, are particularly vulnerable to any consequences — however rare.

Most of us when faced with the unpredictable vicissitudes of illness will try to wrest the situation from uncertainty.

I kept talking about the research I did, like some smartiepants. I didn’t want my daughter to undergo a CT scan unless it was absolutely necessary. I begged for a non-radiation emitting MRI instead (MRIs use a strong magnetic field and radio waves to create an image).

The team relented, likely thanks to a national campaign called Image Gently, something I kept reminding them of, which urges prudence when it comes to CT scans for kids. 

And it was a success. The MRI showed that my daughter had compression fractures in her vertebrae. As it turned out, MRIs are the best way to find these types of fractures. 

Why do we do it? Why do we caregivers insist, cajole and pour ourselves into the plight of the ones we love?

Watching them suffer is often harder than it would be to suffer ourselves. We become driven to do something, anything to make it stop. Many times, those who become caregivers from hell are people accustomed to exerting control elsewhere in life. But also, most of us when faced with the unpredictable vicissitudes of illness will try to wrest the situation from uncertainty.

How to Get the Medical Care Your Loved One Needs

It’s also a biological imperative, an instinctual need to protect and help an imperiled loved one. Even if we go slightly off the rails in the process.

But how can we modulate our instincts so instead of ranting, we negotiate effectively with doctors to get the best possible care?

My advice: prepare in advance to reduce tensions later on.

If you’re taking care of an older person, maybe your parents, it is critical to have them sign an advance care directive, also called a living will. This is a legal document that spells out the actions they want taken if they become too ill or incapacitated to make that clear at the time. Not so incidentally, it provides you with a set of guard rails, so you know how far to go when advocating for them.

You can also de-escalate some friction with doctors by having your parents or other older adults in your life sign a document called a health care proxy. That authorizes someone else — like you — to make decisions for them.

Doctors hate what are called “triad” encounters where everyone is weighing in at once and they don’t know who is the rightful decision maker.

Having one appointed voice will help foster a kinder, gentler approach to caregiving.

To ease caregiving for your teenage or young-adult kids, you — and they — must stay up to date on any ongoing problem such as asthma or stomach woes. You might also want to check out local hospitals that have a pediatric wing (the age limit is usually 21, sometimes older). That way, you can feel less anxious, and be less likely to lose it, knowing you are in the hands of specialists who see kids their age all the time.

Now is the time to find an expert whom all of you trust, and who can talk, with genuine clout, to emergency room or other physicians as an advocate should the need arise.

Still, there is no shame in loudly sticking up for a loved one. If you think something isn’t going right, trust your instincts, keep up the pressure and get answers.

And if you must, channel Aurora.

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What I Learned About Death From 7 Religious Scholars, 1 Atheist and My Father

By George Yancy

Just a few days before my father died in 2014, I asked him a question some might find insensitive or inappropriate:

“So, what are your thoughts now about dying?”

We were in the hospital. My father had not spoken much at all that day. He was under the influence of painkillers and had begun the active stage of dying.

He mustered all of his energy to give me his answer. “It’s too complex,” he said.

They were his final spoken words to me before he died. I had anticipated something more pensive, something more drawn-out. But they were consistent with our mutual grappling with the meaning of death. Until the very end, he spoke with honesty, courage and wisdom.

I have known many who have taken the mystery out of death through a kind of sociological matter-of-factness: “We all will die at some point. Tell me something I don’t know.” I suspect that many of these same people have also taken the mystery out of being alive, out of the fact that we exist: “But of course I exist; I’m right here, aren’t I?”

Confronting the reality of death and trying to understand its uncanny nature is part of what I do as a philosopher and as a human being. My father, while not a professional philosopher, loved wisdom and had the gift of gab. Our many conversations over the years touched on the existence of God, the meaning of love and, yes, the fact of death.

In retrospect, my father and I refused to allow death to have the final word without first, metaphorically, staring it in the face. We were both rebelling against the ways in which so many hide from facing the fact that consciousness, as we know it, will stop — poof!

We know the fact of death is inescapable, and it has been especially so for the nearly two-year pandemic. As we begin another year, I am astonished again and again to realize that more than 800,000 irreplaceable people have died from Covid-19 in the United States; worldwide, the number is over five million. When we hear about those numbers, it is important that we become attuned to actual deaths, the cessation of millions of consciousnesses, stopped just like that. This is not just about how people have died but also that they have died.

My father and I, like the philosopher Soren Kierkegaard, came to view death as “by no means something in general.” We understood that death is about me, him and you. But what we in fact were learning about was dying, not death. Dying is a process; we get to count the days, but for me to die, there is no conscious self who recognizes that I’m gone or that I was even here. So, yes, death, as my father put it, is too complex.

It was in February of 2020 that I wrote the introduction to a series of interviews that I would subsequently conduct for The Times’s philosophy series The Stone, called Conversations on Death, with religious scholars from a variety of faiths. While my initial aim had little to do with grappling with the deaths caused by Covid-19 (like most, I had no idea just how devastating the virus would be), it soon became hard to ignore. As the interviews appeared, I heard from readers who said that reading them helped them cope with their losses during the pandemic. I would like to think that it was partly the probing of the meaning of death, the refusal to look away, that was helpful. What had begun as a philosophical inquiry became a balm for some.

While each scholar articulated a different interpretation of what happens after we die, it was not long before our conversations on death turned to matters of life, on the importance of what we do on this side of the grave. Death is loss, each scholar seemed to say, but it also illuminates and transforms life and serves as a guide for the living.

The Buddhist scholar Dadul Namgyal stressed the importance of letting go of habits of self-obsession and attitudes of self-importance. Moulie Vidas, a scholar of Judaism, placed more emphasis on Judaism’s intellectual and spiritual energy. Karen Teel, a Roman Catholic, emphasized her interest in working toward making our world more just. The Jainism scholar Pankaj Jain underscored that it is on this side of the veil of death that one attempts to completely purify the soul through absolute nonviolence. Brook Ziporyn, a scholar of Taoism, stressed the importance of embracing this life as constant change, being able to let go, of allowing, as he says, every new situation to “deliver to us its own new form as a new good.” Leor Halevi, a historian of Islam, told me that an imam would stress the importance of paying debts, giving to charity and prayer. And Jacob Kehinde Olupona, a scholar of the Yoruba religion, explained that “humans are enjoined to do well in life so that when death eventually comes, one can be remembered for one’s good deeds.” The atheist philosopher Todd May placed importance on seeking to live our lives along two paths simultaneously — both looking forward and living fully in the present.

The sheer variety of these religious insights raised the possibility that there are no absolute answers — the questions are “too complex”— and that life, as William Shakespeare’s Macbeth says, is “a tale told by an idiot, full of sound and fury, signifying nothing.” Yet there is so much to learn, paradoxically, about what is unknowable.

Perhaps we should think of death in terms of the parable of the blind men and the elephant. Just as the blind men who come to know the elephant by touching only certain parts of it, our views of death, religious or not, are limited, marked by context, culture, explicit and implicit metaphysical sensibilities, values and vocabularies. The elephant evades full description. But with death, there doesn’t seem to be anything to touch. There is just the fact that we die.

Yet as human beings, we yearn to make sense of that about which we may not be able to capture in full. In this case, perhaps each religious worldview touches something or is touched by something beyond the grave, something that is beyond our descriptive limits.

Perhaps, for me, it is just too hard to let go, and so I refuse to accept that there is nothing after death. This attachment, which can function as a form of refusal, is familiar to all of us. The recent death of my dear friend bell hooks painfully demonstrates this. Why would I want to let go of our wonderful and caring relationship and our stimulating and witty conversations? I’m reminded, though, that my father’s last words regarding the meaning of death being too complex leave me facing a beautiful question mark.

My father was also a lover of Kahlil Gibran’s “The Prophet.” He would quote sections from it verbatim. I wasn’t there when my father stopped breathing, but I wish that I could have spoken these lines by Gibran as he left us: “And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?”

In this past year of profound loss and grief, it is hard to find comfort. No matter how many philosophers or theologians seek the answers, the meaning of death remains a mystery. And yet silence in the face of this mystery is not an option for me, as it wasn’t for my father, perhaps because we know that, while we may find solace in our rituals, it is also in the seeking that we must persist.

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