06/27/17

The Symptoms of Dying

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You and I, one day we’ll die from the same thing. We’ll call it different names: cancer, diabetes, heart failure, stroke.

One organ will fail, then another. Or maybe all at once. We’ll become more similar to each other than to people who continue living with your original diagnosis or mine.

Dying has its own biology and symptoms. It’s a diagnosis in itself. While the weeks and days leading up to death can vary from person to person, the hours before death are similar across the vast majority of human afflictions.

Some symptoms, like the death rattle, air hunger and terminal agitation, appear agonizing, but aren’t usually uncomfortable for the dying person. They are well-treated with medications. With hospice availability increasing worldwide, it is rare to die in pain.

While few of us will experience all the symptoms of dying, most of us will have at least one, if not more. This is what to expect.

The Death Rattle

“The graves are full of ruined bones, of speechless death-rattles” (Pablo Neruda)

We suspected the patient wouldn’t survive off the ventilator. A blood clot had crawled up one of the vessels in the back of his brain, blocking blood flow to the area that controlled alertness. He would die from not being awake enough to cough.

The beat of the death rattle began when the breathing tube was removed and continued until life was done. It was a gurgling, crackling sound, like blowing air through a straw at the bottom of a cup of water. The average time between the onset of death rattles to death itself is 16 hours. For him, it was six.

The death rattle is a symptom of swallowing dysfunction. Normally, our tongue rises to the top of the mouth and propels saliva, liquid or food backward. The epiglottis, a flap in the throat, flops forward to protect the swallowed substance from entering the airway.

In the dying process, the symphony of swallowing becomes a cacophony of weak and mistimed movements. Sometimes the tongue propels saliva backward before the epiglottis has time to cover the airway. Other times, the tongue fails to push at all and saliva trickles down the airway to the lungs in a steady stream. The death rattle is the lungs’ attempt to breathe through a layer of saliva.

Despite the sound’s alarming roughness, it’s unlikely that the death rattle is painful. The presence of a death rattle doesn’t correlate with signs of respiratory distress.

As often happens in medicine, we treat based on intuition. To lessen the volume of the death rattle, we give medications that decrease saliva production. Sometimes, we are successful in silencing the rattle. More of the time, we placate our instinctive concern for a noise that probably sounds worse than it feels. Without hurting our patients, we treat the witnesses who will go on living.

Air Hunger

“You villain touch! What are you doing? My breath is tight in its throat” (Walt Whitman)

The patient was a wiry woman in her 80s who had smoked for seven decades. Cigarettes turned her lungs from a spongelike texture to billowing plastic bags that collapsed on themselves when she exhaled. It was like trying to scrunch all the air out of a shopping bag. Air got trapped.

Air hunger — the uncomfortable feeling of breathing difficulty — is one of the most common end-of-life symptoms that doctors work to ease.

The treatment? Opiates, usually morphine.

People sometimes ask why the treatment for painful breathing is a medication that can depress breathing. You’d guess that opiates would worsen air hunger.

The answer hinges on defining why air hunger is uncomfortable in the first place.

Some researchers think the discomfort of air hunger is from the mismatch between the breathing our brain wants and our lungs’ ability to inflate and deflate. Opiates provide relief because they tune our brain’s appetite for air to what our body can provide. They take the “hunger” out of “air hunger.”

Others believe that the amount of morphine needed to relieve air hunger may have little effect on our ability to breathe. Since air hunger and pain activate similar parts of the brain, opiates may simply work by muting the brain’s pain signals.

The patient traded her cigarettes for a breathing mask when she came to the hospital. She quit smoking for the umpteenth time and made plans to go home and live independently again. A few days later, her thin frame tired. She died in hospice.

Terminal Agitation

“Do not go gentle into that good night” (Dylan Thomas)

My grandfather screamed two days before he died. “Open that door and let me out! Right now! It’s a travesty! Open that door!”

It was the scream of a lost child. My grandfather’s eyebrows, which had been lost over the years from the outside inward so that only a centimeter of long gray hairs near the middle remained, tilted toward each other.

Until then, we were preparing for missing and absence. Not for an agitated delirium. Not for rage.

A famous poet once wrote that “dying is an art, like everything else.” For hospice doctors, the artists of death, terminal agitation is the subject’s revolt against the shaper. It’s uncommon, but it can be difficult to watch when it happens.

Instead of peacefully floating off, the dying person may cry out and try to get out of bed. Their muscles might twitch or spasm. The body can appear tormented.

There are physical causes for terminal agitation like urine retention, shortness of breath, pain and metabolic abnormalities. There are medications that quell it. Yet it’s hard to discount the role of the psyche and the spiritual.

People who witness terminal agitation often believe it is the dying person’s existential response to death’s approach. Intense agitation may be the most visceral way that the human body can react to the shattering of inertia. We squirm and cry out coming into the world, and sometimes we do the same leaving it.

Complete Article HERE!

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06/25/17

End-of-life care: when CPR is wrong

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Pursuing treatment a person has declined represents questionable ethical practice

CPR is the appropriate response when someone has a cardiac arrest, but it has no role in the patient who slips away naturally at the end of a long illness.

The modern intensive care unit offers a wide range of life support mechanisms so that even the sickest person with multi-organ failure can be kept alive. Parallel to this, the media, and television in particular, has removed any veil of secrecy that may have existed about emergency and intensive care medicine. But it may also have raised expectations to an unreasonable level, with evidence to show that the public perception of the role of cardiopulmonary resuscitation (CPR) is not a realistic one.

The inappropriate use of CPR in certain end-of-life situations has been highlighted recently in medical literature. CPR is the appropriate response when someone has a cardiac arrest. However it has no role in the patient who slips away naturally at the end of a long illness. Senior clinicians have expressed concern that doctors who are called at the time of death feel they have no authority to withhold CPR, or they fear the legal risks of doing so – even where CPR is clearly pointless. As a result, patients with terminal cancer or end stage dementia are being vigorously resuscitated rather than allowed to die naturally.

However, this newspaper has uncovered another questionable aspect of end-of-life care. Responding to recent column, readers have described how patients who had clearly and formally indicated they did not wish to be resuscitated were in fact given CPR. In most cases, the treatment failed, but relatives are being traumatised – firstly by having their concerns pushed aside and then seeing their loved one’s body bruised and broken as a result of vigorous CPR.

In some cases this is happening despite having properly drawn-up advanced care directives present in the patient’s chart. In addition, many charts have DNACPR (do not attempt CPR) stickers prominently displayed on their front covers.

Whatever about the legality of ignoring a patient’s wishes in this way, pursuing treatment the person has declined represents questionable ethical professional practice. Healthcare regulators must take steps to address this breach of trust as a matter of urgency.

Complete Article HERE!

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06/24/17

Many faith leaders are unprepared to help people make peace with death

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Rabbi Laura Geller addresses a room of participants at Temple Emanuel’s conference, “The Next Stage: Looking Backwards and Ahead,” on November 9, 2014.

Confronting sickness and death is part of a faith leader’s job description. Members of the clergy sit with congregants during chemotherapy treatments and pray with them in the midst of pain.

Pastors prepare for this work at seminary, spending a semester working as a hospital chaplain or volunteering at a nursing home. However, some still enter professional ministry unprepared to sit at someone’s bedside and offer advice, according to recent research on religion and end-of-life care.

Many faith leaders are uncertain of when aggressive treatments should be traded for hospice care and confused about what palliative treatments consist of, reports a study in the April issue of the Journal of Palliative Medicine.

Seven in 10 clergy members say it is “somewhat” or “quite a bit” important for them to encourage ongoing treatment for a cancer patient, even when a doctor says there is no hope for a cure, notes a new study in the Journal of Pain and Symptom Management.

This research, as well as other findings from The National Clergy Project on End-of-Life Care, points to a need for ongoing education, according to health experts.

“Poor knowledge of end-of-life care may lead clergy to passively enable congregants with serious illness to pursue … treatments that are associated with increased suffering,” wrote researchers in the Journal of Palliative Medicine.

The National Clergy Project is part of Harvard University’s Initiative on Health, Religion and Spirituality. Program leaders are working on a free end-of-life care curriculum to empower faith leaders, highlighting the important role religion often plays at the end of people’s lives.

“What clergy say — and what they do not say — can make a major difference in whether believers experience a ‘good death,'” the Association of Religion Data Archives reported in its overview of recent research.

Increasingly, palliative care, which focuses on providing pain relief rather than a cure, is seen as a key part of dying well, yet many people, including pastors, find it difficult to give up on intense or invasive treatments.

Accepting that a cure isn’t possible “may be perceived as a decision that undermines one’s faith in a God who may intervene with a miracle through medical treatment,” wrote researchers in the Journal of Pain and Symptom Management.

These researchers and other experts at The National Clergy Project on End-of-Life Care don’t want to undermine religious beliefs. But they do want to ensure that faith leaders are informed about medical options before they influence a patient’s decisions.

“Our goal is for patients and families facing difficult medical decisions to receive better spiritual and medical care,” the project website notes.

Around 3 in 4 faith leaders are open to training on end-of-life care, recent research showed.

In addition to seeking out insights from medical professionals, members of the clergy may benefit from organizing conversations about death and dying within their communities. Rabbi Laura Geller, rabbi emeritus at Temple Emanuel of Beverly Hills, has done this as part of a broader effort to understand what people at her synagogue fear as they near retirement.

“The conversations were so rich and powerful that nobody wanted them to end,” she told the Deseret News last year.

Initial small-group discussions on life after retirement grew into a communitywide effort to better serve the needs of older synagogue members. People thought through how to emotionally and spiritually grow even as their bodies aged and illnesses loomed, Rabbi Geller said.

“How do you make meaning in the face of the fact that you’re going to die? That’s what faith communities are supposed to be teaching people,” she said.

Complete Article HERE!

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06/23/17

I’m Dying Up Here: Books on How to Grieve and How to Die

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I’m never going to die. I’m sorry I can’t say the same for you. My role models for how to do death are Jesus and Wile E. Coyote. Yours are other dead people. However, because I’m never going to die, I’m super comfortable with the entire topic, and the fact that I’m late turning in this column on books about death and dying has nothing to do with avoiding the subject.

So an author who suggests the dead are not howling in the abyss but rather hanging out in what she imagines as a pretty “waiting area” — well, that’s an author who’s easy for me to love. Theresa Caputo’s television show, “Long Island Medium,” has been a mainstay on TLC, and in GOOD GRIEF: Heal Your Soul, Honor Your Loved Ones, and Learn to Live Again (Atria, $25.99), Caputo (with her co-writer, Kristina Grish) wants us to know what she has learned from all those years of channeling the dead: “It’s their greatest hope that you learn to heal and carry on.” The dead — or Spirit, as she calls them — are quite chatty and opinionated. Among the things Spirit wants you to know:

Your relationship with your loved one isn’t over; it has merely changed. (Even if the loved one can’t drive you to the airport, if you ask nicely Spirit might “help you get a cab.”) You can let your feelings rule you for short periods of time, but “you must also take active steps to heal.” (Spirit doesn’t like whiners.) When it’s your time, it’s (usually) your time, or at least in the “destiny window” of time. Caputo has a host of practical, rather adorable ideas for honoring Spirit, which often involve giving gifts to others in Spirit’s name.

After a while it occurred to me that if the departed behaved in the loving way Caputo describes, I would like them more when they were dead than when they were alive. No matter; I am entirely agnostic, and still found this book comforting and quite touching. I felt oddly close to my own dead parents as I read along.

Those whose loss is more recent may prefer a less warm and fuzzy approach — more of a “what can I do to get on with my life right now?” book. Resilience is a hot topic these days, and Lucy Hone has written a book about bereavement reflecting both her own research and her own grief. RESILIENT GRIEVING: Finding Strength and Embracing Life After a Loss That Changes Everything (The Experiment, paper, $15.95) begins with Hone’s own tragedy: In 2014, her 12-year-old daughter was killed in a car accident. Hone shows us how to harness the (thankfully common) power of our own resilience to work our way through a horrible loss.

Resilience is not a shield against suffering, Hone suggests. It enables us to feel and to move through emotions like pain and guilt so that we can continue to feel alive and experience happiness. Hone does not buy into the idea that you just feel your feelings and take all the time in the world; what if, like Hone herself, you have other kids at home, a demanding job, and an urgent need to function in the real world? Hone offers concrete strategies for regaining your equilibrium even in the greatest pain. Among them: Choosing where to focus your attention (not on hating someone or something, which consumes energy); taking your time with the body of the one you love (there is no mad rush to bury or memorialize beloved); and re-establish routines, particularly if you have children, who may need that structure even more than you do.

Despite her insistence to the contrary, there is a strong whiff of “just-get-on-with-it” matter-of-factness that may be a little beyond some of us. Patrick O’Malley’s GETTING GRIEF RIGHT: Finding Your Story of Love in the Sorrow of Loss (Sounds True, paper, $16.95), co-written by Tim Madigan, is for those of us made of less stern stuff. O’Malley was trained as a counselor, but when he lost his infant son, and he tried to work through the famous Kübler-Ross stages of grieving — denial, anger, bargaining, depression, and finally acceptance — he felt like a failure. Grief was not linear; it was more of an oscillation. O’Malley wanted to talk about his son, to tell others who his son was, even in the few months he was on this earth. He began to see the wisdom of the writer Isak Dinesen, who noted, “All sorrows can be borne if you put them in a story or tell a story about them.”

O’Malley gives us the tools to tell the story of the deceased: favorite memories, when he or she was happiest and saddest, how you learned about the death, and so forth. Different kinds of loss bring different stories, and different kinds of pain. Telling the story of how you loved and how you lost gives shape and meaning to what first seems to be a meaningless, uncontrollable event.

For a compelling argument for why we have to rethink the wisdom of end-of-life “heroics,” there is EXTREME MEASURES: Finding a Better Path to the End of Life (Avery, $27). The author, Jessica Nutik Zitter, is a physician who specializes in both critical care medicine and palliative care, the yin and yang of medicine. Critical care specialists are taught to save lives with all the technology and machinery at their disposal. Palliative care specialists need the opposite skill set: They have to know how to help a dying person let go. Zitter is trained in both.

Of course, it was not always thus. Dr. Zitter describes her first Code Blue as a resident. She rushes into the room to heroically save the patient, and instead she is asked to resuscitate someone who is clearly dead, or should be. “With each compression, there is a sickening click, which I don’t recognize until I hear someone next to me whisper, ‘His whole chest is breaking,’” she writes. “This man is dead.”

The patient stays dead. But in that moment Zitter realizes that there must be a better way to depart this earth. She also discusses how palliative care can respond to many of the most painful symptoms of dying in a way that care geared toward prolonging life cannot. And why, at the end of life, less is often more compassionate. Like Atul Gawande’s “Being Mortal,” Zitter’s book shows how knowing when to do nothing is as vital to being a good doctor as knowing when to do everything.

As compared to the more philosophical “Extreme Measures,” John Abraham’s HOW TO GET THE DEATH YOU WANT: A Practical and Moral Guide (Upper Access, paper, $14.95) is exactly as nuts and bolts as it sounds. Abraham, a thanatologist and Episcopal priest, writes extensively about advance directives and how to ensure your wishes are abided by; and then, he tells us the least painful and messy ways to go. It may not be easy to read about these methods, but they affirm the idea expressed by a popular button worn by Abraham and other members of the Final Exit Network — “Let me die like a dog” — because anyone who has ever had to euthanize a beloved pet knows how painless and peaceful death can be. Those of us who fear loss of control of our lives more than we fear death will find Abraham’s book edifying. I even appreciate the phrase he uses instead of assisted suicide; he prefers “deliberate life completion.”

Knowing Nina Riggs died shortly after writing THE BRIGHT HOUR: A Memoir of Living and Dying (Simon & Schuster, $25), the story of her experience with metastatic breast cancer, makes this moving and often very funny memoir almost unbearable to read. But that’s because it is not one bromide after the other. It is true, and it might crush you. There is one moment here that says everything about how lonely you can feel when you’ve been told you have a disease. It’s past midnight, and Riggs and her husband are lying in bed: “‘I just can’t wait for things to get back to normal,’ says John from his side of the moon.” Riggs realizes there may not be a “normal” anymore, and reacts with anger, and a growing resolve that we all wish we could achieve: “Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other.”

I’ll just say this: You can read a multitude of books about how to die, but Riggs, a dying woman, will show you how to live.

Complete Article HERE!

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06/21/17

The New Stages of Grief: 5 Tasks, No Timeline

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What bereaved survivors wish they’d known about the grieving process

Bereaved people often brace for the so-called stages of grief, only to discover their own grieving process unfolds differently. The stages of grief — popularized from earlier theories put forth by Elisabeth Kübler-Ross in her 1969 book On Death and Dying, and later modified by others — initially described responses to terminal illness: denial, anger, bargaining, depression, acceptance. While some find those responses relevant to coping with death, psychologists increasingly believe that the idea of “stages” oversimplifies a complex experience. And grieving survivors seem to agree.

“When we’re confronted with emotional chaos, we yearn for clarity, and the Kübler-Ross stages of grief serve as a kind of road map,” says Robert Neimeyer, a professor of psychology at the University of Memphis who studies grief. “But it’s more accurate to think about phases of adaptation rather than stages of grief. And they overlap rather than fall in sequence.”

No two people mourn the same way. The grieving process is shaped by one’s relationship to the deceased and the nature of the death, Neimeyer says. For example, “non-normative losses” — sudden or untimely deaths (accidents, homicides, deaths in youth or life’s prime) — tend to trigger more intense anger and disbelief, and longer depression.

What all survivors share: Death presents challenges, from processing the loss and coping with grief symptoms through reformulating a relationship to the late loved one — tasks that can take months and years to work through.

Grief task #1: Acknowledging the Reality of Loss

The finality of death is always a shock, even after a known terminal illness. After helping her 62-year-old husband battle a brain tumor for four years, Maureen McFadden thought she’d girded herself for his eventual passing. “A nun warned me that for all the pain I’d already gone through, I would not be prepared for what grief is. She was right,” says the Brooklyn, New York, widow. “Even though I understood the outcome when he was first diagnosed, I had no idea that I was still hoping. When someone dies, you’re just not prepared for that, because humans don’t know how to live without hope.”

It wasn’t until after the busy period of nursing, funeral planning, and the memorial services that the truth struck — “as if I’d been shot,” McFadden says. Later, one of her husband’s physicians told her that people who are constantly at a dying loved one’s side often have the hardest initial response. “He said they seem to hold an unarticulated belief that just by virtue of their presence and determination, they will keep the person alive,” she says. “The eventual death seems like a terrible failure.”

Accepting that death is real (and not your fault) isn’t the same as being OK with it. It merely means absorbing the truth of what has happened. This can be as difficult and painful as smacking through the first high breakers at the ocean’s shore. For some people, acknowledgment happens quickly; others remain in disbelief for months or years (or experience disbelief in periodic bursts).

What helps:

Experiencing the rituals of death. Lise Funderberg and her sisters allowed someone else to organize a quick memorial service because “we were so out of it, floating in Jell-O.” Looking back, she wishes they had done it themselves. “We didn’t even put anything in the papers. I wish we had known how a ritual of closure is really important for everyone in the community of the deceased, everyone who loved him,” says the author of Pig Candy: Taking My Father South, Taking My Father Home. “It’s not like we would be doing another one.”

Knowing there are no shortcuts through grief. “Grief can begin even before death, during caregiving. But grief doesn’t end until we do,” says Sherry E. Showalter, a social worker in Tarpon Springs, Florida, who’s the author of Healing Heartaches: Stories of Loss and Life.

Practicing your faith traditions. Some research shows that survivors with a spiritual life tend to absorb grief more quickly, possibly because — psychologists believe — people who eventually find meaning in loss are generally better able to cope with it.

Grief task #2: Weathering the stress of separation

Mourning brings many physical and emotional hallmarks: crying, being unable to cry, sleeplessness, not eating, numbness, feeling forlorn, withdrawing socially, and so on. The exact mix is different for everyone.

Anger is a common response, especially to a violent or untimely death. “My anger was so primal and intense, that this good person, my dad, had to die. It was illogical. I was mad at the world. I even thought, ‘Why couldn’t it have been my mom?’ who was already sick and not a contributing member of society,” says Harriet, a San Francisco producer whose father died at 69 after a cancer diagnosis.

Intense emotions can be a way to “hang on” to the deceased person, bereavement counselors say. It’s a tangible connection to the person who died. “It feels like power, like life,” one widow says of her white-hot anger. Letting go of the emotion, or learning to live with it, can feel like letting go of the person who died. Naturally, there can be a built-in reluctance to do that.

Another confusing emotion: Relief. “I felt horribly guilty that I was so relieved when my mom died,” says the daughter of an alcoholic. Caregivers, for example, often feel surprise (and, in turn, guilt) that they feel a lifting of a physical and/or emotional burden when caregiving ends. This is a natural response that’s separate from the sadness of losing the person. It’s entirely possible, and normal, to feel two such different emotions at the same time.

What helps:

Letting yourself experience turbulent emotions rather than shutting them down. “Wallowing is good,” says Cherie Spino, a mom of four in Toledo, Ohio, whose mother was killed at age 69 by a drunk driver. “You have to go through it, dwell on the person and your sadness, cry.”

Redirecting anger. Within a few years of her dad’s death, Harriet, the producer, “used my rage to fuel my passion” for a new project about cancer.

Asking what the deceased person would suggest. Maureen McFadden, whose husband died of a brain tumor, says she partly transitioned out of anger when the thought struck her, “What would Jim want from me?”

Reading about others’ experiences. Literature about grief can point out common threads. Survivors often point to Joan Didion’s The Year of Magical Thinking and A Grief Observed, by C.S. Lewis.

Seeking bereavement support. Professionally led support groups or individual counseling provide skilled guidance as you navigate confusing or painful emotions. The goal isn’t to make the feelings go away but to help you embrace their purpose. Some people are ready immediately for this kind of help while some come to it long after the loss, and others do fine on their own.

Grief task #3: Adjusting to Everyday Life After a Loss

After the funeral and burial, mundane life patterns such as shopping and working must eventually resume, now in altered form. “Everyday life” often leaves survivors experiencing long-term reactions on top of the more familiar emotional and physical manifestations of grief.

Most common: yearning (intense longing for the person who has died), stress, and depression. These can prevail whether the relationship was happy or turbulent.

“Whatever unresolved issues you have, they get magnified and are elusive at the same time; you feel alone in the world,” says Ellie, whose parents and sister all died within five years. “I felt so isolated in my grief.”

What helps:

Not rushing yourself. “Being without my parents knocked me down and kept me down for a long time; it was as if something had been severed in me,” says Ellie. “Time and new experiences helped, but it was mostly a matter of putting one foot in front of the other.”

Ignoring the “grief police.” Don’t let others rush your adjustment. Turn a deaf ear to the well-meaning comments people make that miss the mark — including “It’s time to move on.”

Getting help as needed with practical tasks. Handling finances, cooking, yard work, and so on can swamp a bereaved person, especially if they’re unfamiliar duties. This just adds to stress and prolongs pain.

Inching toward new ways of doing things. One woman who had a standing Saturday morning long phone call with her late mother felt bereft at that hour each week. “I switched my walking time to then and called my sister while I walked, which shook up my routine and dulled the pain.”

Not expecting you can medicate the pain away. Antidepressants have a place in helping someone who has a chemical imbalance causing depression. But antidepressants can also impede the grieving process, and they can’t remove the yearning that’s associated with depression. The goal should be to think about the deceased with less pain, over time, and to derive a measure of comfort from such thoughts.

Grief task #4: Revising your relationship to the deceased

Your relationship to the person who died doesn’t end with his or her death; it changes. “The goal of grieving is not to let go but to find a way to hold on with less pain,” Neimeyer says.

Simon Ruben of Israel’s University of Haifa describes the grieving process as being “two-tracked,” with two processes happening simultaneously. On one track, we cope with the visible symptoms and emotions (anger, depression, sleeplessness, and so on). On the other track, less obvious but equally important, we’re working to reframe our relationship to the loved one who has died.

Nobody forgets a loved one. The question is, how do we hold him or her in our memory, our rituals, and our conversation in a way that’s manageable, possibly even comforting, rather than painful?

What helps:

Reminiscing aloud. “Loss is so taboo in American culture. You’re supposed to have a funeral and move on,” says Jennifer Amandari of Los Angeles, who lost her mother when she was 16 and then lost an infant daughter six years ago. “But not talking about the person stunts your ability to heal and work the loss into your life.”

Having your grief witnessed. When psychologist Robert Neimeyer’s teenage son got choked up at Thanksgiving on realizing he was seated in his late grandmother’s chair, the table conversation came to a halt. Rather than rushing the awkward moment, someone shared his own memory of her. “We all began to recall ‘Gloria stories,’ and it was a beautiful moment that allowed us to continue a connection to her,” Neimeyer says.

Reflecting on the legacy of the person who died (alone or with others). How did he or she inspire you? What was his or her life’s meaning and purpose? Questions like these help shape a perspective on the seeming meaninglessness of death.

Following rituals that celebrate or honor the deceased. Victorians made an art of the rituals of remembrance, from wearing black and jewelry made from the hair of the deceased to producing funeral cards and postmortem photography. Such traditions help survivors maintain a connection and continuity. Family members join Lisa Byers of Toledo, Ohio, on an annual visit to the grave of her late husband, who died of a heart attack at age 46. Patti Anderson, who lives in Cincinnati, joins her out-of-state sisters in annual trips for their mother’s birthday. They’ve turned it into a memorial to her, complete with a special dinner devoted to reminiscing. Another family sends balloons aloft on the anniversary of their father’s death — followed by a dinner at his favorite restaurant.

Creating a memorial. Cherie Spino and her sisters plan to make a wall hanging from scraps of their mother’s clothing that they’d saved. Others have found solace in creating scrapbooks or PowerPoint presentations with old photos, symbolically lighting a Caring candle and posting a dedication, or planting a tree or garden.

Grief task #5: Rewriting the storyline of your life

“Grief is more than an emotion; it’s a process of reconstructing a world of meaning that’s been challenged by loss,” psychologist Neimeyer says. When our life is closely entwined with another’s, and that person dies, it’s as if a main character in a book dropped out. How can future chapters be rewritten so the book makes sense?

And yet there must be a rewrite, because life is a narrative. An important part of grieving is to gain a perspective on the meaning of the loss and to reconstruct a world in which you can live effectively afterward. Who will now do the things that your loved one once did for you? Who will you confide in about your promotion or your child’s first steps? Will you ever be able to walk into a hospital or nursing home again? Be able to love again? How has the meaning of your life changed?

One challenge: This involves integrating the reality of death into a cultural system that likes to pretend death doesn’t exist.

What helps:

Finding compassion in the workplace, one’s place of worship, and social organizations. It can be incredibly useful to reintegrating into life after a loss to have it acknowledged, rather than ignored without comment. Example: a manager stepping forward to say, “I’m sorry for your loss; let’s talk about what you feel like tackling now.”

Putting your life story on paper. Neimeyer has his patients write the chapter titles of their life stories. Then he asks them to reflect, in writing, on specific questions: How did you organize the flow of your self-narrative? What are the major themes that tie it together? If you were to give a title to your self-narrative, what would it be?

Recognizing that you’re not the same person as before. Losing any loved one is a transformative experience. Expect and embrace change, rather than avoiding it and expecting to return to your “old self.”

Expecting the intensity of your grief to vary. “Whenever I go to a funeral, I cry and cry now — for my own loss,” says one woman. Mother’s Day, birthdays, and anniversaries can ignite surges of depression years later — or there may not even be an obvious trigger.

Being open to help. It’s worth noting that there may be a syndrome called complicated grief, in which grief reaches a point where therapy can be useful. Is prolonged grief a new psychological disorder? Many psychologists now think so and want to see it become a recognized disorder. But more relevant than labels is being open to help if you feel stuck.

A “Happy” Ending?

Important point: Completing these five tasks doesn’t “end” the grieving process. They may never be fully completed. Grief isn’t a disease, after all; it’s a transition.

“Grief is like a room we may enter or leave again and again, for years,” psychologist Robert Neimeyer says. “The character and quality of grief may change across time, but it remains available to us as a resource that we can revisit.”

That positive word, resource, is a deliberate choice: “Being able to revisit earlier losses and their implications for us can enrich our lives and make our narrative more coherent about who we are and how we got to be who we are,” Neimeyer adds.

“I still feel such a sense of loss,” says writer Lise Funderberg of her father’s death in 2006. “But qualities of that experience were incredibly moving — the compassion and charity shown to me and witnessed by me. It’s strange to hold two opposing ideas in your head: that an experience can be horrible and yet have good effects. Things were stirred up by my dad’s dying that are pretty incredible and life-affirming. I now know that if you’ve loved a person, you will always grieve them. It just changes over time.”

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06/20/17

Family Cited For Viking Funeral on Local Lake

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Photo taken seconds after the explosion on Scotts Flat Lake.

By

A local family from the Cascade Shores housing development is in hot water for attempting to cremate a deceased relative on Scotts Flat Lake earlier today. The Barstad family recently suffered the loss of the family’s patriarch, Norman Barstad, who had lived with the family at their Spanish Lane home. The senior Barstad, who was 92 years old when he passed last week, requested that he receive a full Viking burial on the water. The family agreed to his last wish. Unfortunately, neither the Nevada County Health Department nor the Sheriff (who answered numerous  9-1-1 phone calls) seemed to think this was a good idea.

“Generally, the burning of bodies on an open and public water space is frowned upon,” said Nevada County Sheriff Keith Royal in a prepared press statement. “And although there are no specific laws preventing a traditional Viking funeral on Scotts Flat, you can’t just set stuff on fire and send it off into the lake. Especially things as explosive as this.”

According to witnesses at the lake, the Barstad family gathered on the shore of the Nevada Irrigation District-owned lake around 11 AM on Friday. A large Dodge truck was towing what appeared to be a homemade pontoon boat. There is some debate about the make-up of the boat. Some said that it looked like a pile of logs; others said it looked like a re-purposed pontoon boat covered in kindling. What is not in question is what happened once it arrived in the middle of the lake and detonated.

“Yeah I was fishing,” said area handyman Hank Snow in a Scooper telephone interview. “I saw these guys lower this homemade pile of sticks down the boat launch ramp. I didn’t think much of it because, well, you know, this is Nevada County and I figured it was a back-to-nature type of thing. But when no one got on the boat and then about 200 yards out it exploded into flames, I was like, ‘holy [redacted]’ and I called 9-1-1. There was debris flying everywhere. I think I got hit with a detached finger.”

Jimmie Barstad, the son of the incinerated father who organized and built the cremation boat, said that he may have “overstocked” the vessel with too much gasoline and surplus illegal fireworks from the last 4th of July.

“Well, I wanted to make sure that it went off and worked,” said a somewhat proud and nervous Jimmie Barstad. “So I really stuffed that thing with everything flammable I could find. I just didn’t think gasoline would explode like that. I thought it would work more like the lighter fluid on my Weber grill. So the explosion scared the heck out of everyone. We’re still picking up pieces of Dad all over Cascade Shores.”

Instead of engulfing the senior Barstad in gentle and majestic Viking flames, the homemade barge violently exploded, sending bits of the senior Barstad flying over Cascade Shores. While some of the remains of Mr. Barstad immediately disintegrated from the intense explosion, some body parts landed around the development.

“I heard this explosion in the distance,” said Cascade Shores resident Sherry Smith. “I didn’t think much of it at first because we’re always hearing crap like that up here. You know, shotguns and whatnot. It wasn’t until I heard a thump on my metal roof. I went outside and right as I looked up, part of a leg slid down and whacked me in the head. It was pretty horrible.”

Other neighbors reported mostly wood debris in, on, and around their properties. One local family was struck by flying fragments while using their powerboat.

“We were out there with the family,” said Stacy Grant of Nevada City. “We had borrowed my Dad’s boat and were tooting around the lake. We didn’t see the explosion. We heard it. We were up by the dam, which was kinda far away. We still got showered with a bunch of sticks and things. I hope they were just things.”

As for the Barstad family, they have no regrets about giving their patriarch a proper Viking burial.

“It’s the Viking way,” said Jimmie Barstad describing the last wish of his now incinerated father. “We were happy to pay the fine to give Dad the burial he wanted. We knew there would be some risk, but this is Nevada County and we hoped that no one would notice or care that much. Turns out we were correct, except for the Sheriff and County officials. I hope to have my burial on Lake Tahoe someday. But that will be a trickier one for my kids to figure out. I’m glad they got to see their Grandpa leave us like this. It was a special day for everyone.”

Complete Article HERE!

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06/19/17

This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide

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Nursing professor Cathy Campbell aims to expand palliative care practices in places around the world where it’s existed only informally.

By Christine Phelan Kueter

Each week, as she sits at the bedside of dying patients, University of Virginia nursing professor Cathy Campbell remembers the bad old days of end-of-life care during her early nursing practice in the mid-1980s.

Staff didn’t know how to treat patients, their bodies addled by pain and disease, and treatment had less to do with pain management than with beating back deadly illnesses, she recalled. Even for patients who were moments from passing away, there was great reluctance to offer relief with drugs like morphine and Demerol, so as not “to hasten death.” But death in hospital intensive care units, with wires and tubes snaking from patients’ every orifice, was painfully common.

“There was always this great tension between compassionate care and the cure, the cure, the cure,” said Campbell, recollecting her early years as a nurse in a Florida Veterans Administration hospital, “and at that point palliative care wasn’t very good, and the things we did to patients weren’t very good for them, either.”

While the memories still smart, Campbell’s relieved when she considers the expanse of modern palliative care, and the growing understanding that “there is such a thing as a good death.”

But drugs and technologies aside, palliative care remains rooted in compassionate presence. That might mean that light chit-chat, passing ice to the bedridden, or quietly holding a griever’s hand. It also might mean answering loved ones’ frank and probing questions – What does death look like? How do you know if he’s in pain? Does she know we’re here at all? – or recommending medication adjustments for pain, based upon observed distress.

Many times, though, Campbell’s just there, palms up, offering herself as a witness and a comfort.

“This is what I want to do, where I want to be,” said Campbell, a nurse for 31 years and a palliative care scholar for 25. “The day of death is one day, but there are a lot of other days to provide support in between.”

But if palliative care has more recently expanded into America’s consciousness, beyond our borders its practice is spotty at best, and absent at worse. That absence is felt most acutely in the world’s poorest, most rural regions where chronic illness and death from diseases like HIV and AIDs, malaria and tuberculosis are common.

In many areas, palliative care is anemic due to too few providers. In South Africa, for instance, the patient-nurse ratio is 417-to-1, a reality that pushes many tasks onto community health workers who provide the majority of rural patients’ care. Among those workers – local individuals, some trained, who do home visits and provide a conduit to nurses in charge of vast geographic territories and literally thousands of patients – palliative care knowledge is even less common.

Most community health workers have basic training in bathing and turning bed-ridden patients; perhaps know how to take vital signs, like blood pressure and pulse; and may, too, know something about vectors of disease transmission for some of the region’s most deadly diseases, including tuberculosis and HIV. But palliative care, Campbell said, is “learned on the fly,” even as it’s an increasingly robust part of their job.

Those gaps in knowledge are due to the fact that palliative care concepts haven’t become fully integrated into overseas’ nursing curricula. It all adds up to a perfect storm, Campbell said, even in this era when the World Health Organization has declared access to palliative care “a human right.”

Given these twin realities, Campbell said, a movement to buttress community health workers’ education, skills and reach is afoot, and Campbell is in the thick of the march. She just received a two-year Fulbright Scholarship to augment the bare-bones understanding of palliative care as it exists in two rural provinces of South Africa and Thailand, and how best to broaden it with the support of community health workers.

Campbell’s years of work as a faculty mentor and researcher at UVA’s Center for Global Health have provided invaluable insight into the many issues and tremendous potential of community health workers in rural communities. This summer, Campbell will mentor a team, in collaboration with colleagues at the University of Venda, of Center for Global Health University Scholars for a fourth year of longitudinal research on community health worker engagement in community care.

With the Fulbright, Campbell and her UVA research assistants will conduct focus groups with 60 rural community health workers across Thailand and South Africa to discuss the cases they see and document how they handle them, in order to determine what types of educational and training programs make the most sense. Their ultimate aim is to expand palliative care practices in places where it’s existed only informally.

Campbell has already observed community health workers’ appetite for training in palliative care in particular – “they’re eager for it,” she reports – and in many cases, the most experienced and seasoned workerss are likely to receive training and education and then return to their peers to train them.

Community health workers, Campbell said, are the linchpin to expanding developing nations’ palliative care reach into the rural communities that need it.

“We can train CHWs to do more, because they’re really the ones doing the work,” Campbell said. “They’re a community treasure.”

Complete Article HERE!

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