Thursday, June 22, 2017

The Jewish Perspective on Dying and Death with Rabbi Laurie Dinerstein-Kurs

"The traditional view is, while we are not to shorten life...we arenot to prolong death."

  • How a dying patient (goses) should be cared for in the last hours of life 
  • What are the duties of a Shomer The Jewish ritual of Tahara (washing of the dead) 
  • The role of a Chevra Kadisha  
  • Why a traditional Jewish funeral should be relatively inexpensive 
  • Jewish burial customs 
  • The mourning ritual (Shiva) for Jewish families 

  • The Jewish Perspective on Dying and Death with Rabbi Laurie Dinerstein-Kurs

    Wednesday, June 21, 2017

    When a Pet Dies, Helping Children Through the ‘Worst Day of Their Lives’ - The New York Times

    The loss of a pet is often a child’s first experience with death. Understanding the unique ways that children view pets and respond to their passing can help parents to ease the grieving process. 
    Joshua Russell, an assistant professor of environmental science at Canisius College in Buffalo, who has studied the effects of pet loss in children, explained that for many children, pets are more than just animals. “Many kids describe their pets as siblings or best friends with whom they have strong connections,” he said. 
    In a study of 12 children ages 6 to 13 who had lost a pet, published in the journal Environmental Education Research, Dr. Russell found that even years after the pet’s death, some children still described the loss as “the worst day of their lives.” He also discovered that children come up with unique ways to rationalize their pet’s passing and that the way a pet dies influences how children grieve. “Children, in particular, have a distinct sense of existential fairness around whether or not an animal lived until an appropriate age,” Dr. Russell said.

    When a Pet Dies, Helping Children Through the ‘Worst Day of Their Lives’ - The New York Times

    The Symptoms of Dying - The New York Times

    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.

    The Symptoms of Dying - The New York Times

    Tuesday, June 20, 2017

    The parenting lessons I learned from my dying child - The Washington Post

    Jennifer Golden writes about telling her young daughter that her little brother is is dying. <P><P>"Answering the question that is asked is the first step. The tougher part is fighting the urge to elaborate on that answer once delivered. I think of it as a “full-stop” approach, requiring disciplined conclusiveness: Listen to the question; answer that question and that question only; full stop; wait for the next question. The strategy has enabled me to break down complicated, weighty issues into “bite-sized” pieces that are more manageable for a kid’s developing brain to process. It gives the child time to digest the information she has heard and come back for more when she is ready. I have been surprised by the number of times Hannah has returned to a conversation out of the blue hours or even days later. I have benefited, too.  This technique enables me to give my kids answers without sharing my emotional baggage. Some of our conversations are fraught with emotional triggers, particularly when my girls have questions about their brother. But answering them directly and honestly and then waiting, sometimes with gritted teeth, for their next one forces me to follow my child’s lead instead of going down the rabbit hole of my own grief."

    The parenting lessons I learned from my dying child - The Washington Post

    This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide | The Amateur's Guide To Death & Dying

    University of Virginia nursing professor Cathy Campbell talks about how end of life care is improving:
    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 Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide | The Amateur's Guide To Death & Dying:

    Sunday, June 18, 2017

    “How long have I got, Doc?” Why many cancer patients don’t have answers -

    Some patients approaching the end of life are in denial, assuming that they’ll live much longer than is realistic. Yet doctors often have a far more pessimistic estimate of their life expectancy, said Dr. Robert Gramling, the Holly & Bob Miller chair in palliative medicine at the University of Vermont College of Medicine. In a study published last year in the Journal of Clinical Oncology, only 5 percent of cancer patients with less than six months to live had an accurate understanding of their illness. Thirty-eight percent couldn’t remember ever talking to their doctor about their life expectancy. 
    And in a 2012 study in The New England Journal of Medicine, 69 percent of patients with metastatic lung cancer and 81 percent of people with advanced colorectal cancer thought they could still be cured, although both conditions are generally considered fatal, said study co-author Dr. Nancy Keating, a professor of health care policy and medicine at Harvard Medical School.  
    Such misunderstandings can have profound consequences for patients and their caregivers. Patients who don’t understand how long they have to live often choose overly aggressive therapy that can cause pointless pain and suffering. Nearly one-third of cancer patients end up in the intensive care unit, or ICU, in the last month of life, according to the Dartmouth Atlas of Health Care. Although intensive care can save the lives of younger, healthier people, it doesn’t improve or lengthen the lives of people with terminal cancer.  
    “It’s surprising how many people end up in an ICU, critically ill and dying, without realizing they’re dying,” said Dr. Mark Siegel, a professor of internal medicine and critical care specialist at the Yale School of Medicine. These last-ditch measures to extend life can leave families with extended grief and trauma, Siegel said.  
    Although almost half of Americans use hospice care — which focuses on comfort care at the end of life — studies show that many people enter hospice very late in their illness, often only a week before death. “The real question is, ‘How do these patients become overly optimistic about their prognosis and what part do physicians play in this?’” Siegel said. “What do physicians tell the patients? What are patients hearing?”"

    “How long have I got, Doc?” Why many cancer patients don’t have answers -

    Death Trips | Ann Neumann

    Some people prefer dying along.

    To ward off the specter of elder isolation, we are redoubling our faith in individualism, strangely enough—or more precisely, our conviction that what you choose will be your fate. Bad personal choices get you a lonely death. Good personal choices, on the other hand, get you something like “The Death of Socrates,” that painting by Jacques-Louis David in which attendants throng around the deathbed, contorting their bodies in energetic devotion. (The hemlock may have been bitter, but at least he felt the love.) 
    Feats of self-improvement are what will put you on the path to a worthy end—and these days, those feats include spending money on the very thing that our new service economy is keenest to offer you: customized experiences. A doula-assisted death is a bespoke affair. Through made-to-order rituals, your death can be propelled into the realm of the unique, just like everyone else’s.

    Death Trips | Ann Neumann

    Sunday, June 11, 2017

    My sister made her end-of-life wishes clear. Then dementia took hold

    Honoring the wishes of a woman -- what she wanted when she was well might not be what she wanted when her memory faded and her personality changed.
    I had learned that the light of my sister’s spirit was stronger than her illness. It would survive.  
    In inpatient hospice, we gave my sister liquid with a dropper, squirting it into the back of her mouth. Sometimes, she could take a bit of applesauce on a spoon. We’d wait to hear a gulping swallowing sound. And then, after giving her time to rest, we’d try again. She was fading.  
    Family surrounded her day and night. We never sat down and talked about my sister’s wishes. But they informed what was happening along with another set of wishes, which we all understood but had never been articulated: “Treat me with respect. Be there by my side. Love me. Remember me.”  
     In the end, the feeding tube was a side issue. My sister was dying, one way or another, and nothing could change that trajectory. Her husband and children decided against artificial nutrition or hydration. It was what she’d said she wanted.  
    They don’t regret it. Neither do I. And yet. We didn’t turn away from the feeding tube because of the wishes my sister had laid out earlier. We were honoring both the person she had been and the person she had become by making sure she didn’t suffer unnecessarily. Every step of the way, we let her know her life had value.  
    And when the hard times came, we didn’t duck. We were fully present. My sister passed peacefully last November, surrounded by people she loved. She was 58. When I think of her now, I think of a romantic girl, an exhilarated college student, a striving 20-something, a passionate wife and mother, and a person with dementia whose lust for life and inner light shone all the way to the very end. That light has become a beacon, deepening my sense of what it means to be human and what’s possible at the end of life. I carry it with me to this day.

    My sister made her end-of-life wishes clear. Then dementia took hold

    Monday, June 5, 2017

    The Victorian Cult of Mourning

    No one knew how to grieve like the Victorians. The elaborate and often downright weird rituals of the era – inspired by Queen Victoria who publicly mourned her husband’s death for forty years – provide a fascinating look at a culture for whom death was ever present. In the United States, losses from the Civil War eclipsed 600,000 deaths, or two percent of the entire population. Death was everywhere. Mourning was an art form. Widows dressed in black from head to toe for an entire year. Household mirrors were covered and clocks were stopped when a death occurred. Women created and wore intricate jewelry made from the hair of the deceased. And rural cemeteries were established across America. 
    Green-Wood is one such example, which by the 1860’s drew over 500,000 visitors a year who came to see the cemetery’s collection of ornate monuments and mausoleums. Join us for an afternoon symposium devoted to exploring the arts and culture of Victorian mourning with illustrated talks and show-and-tell presentations of period artifacts. 
    Speakers will include Dr. Stanley Burns, M.D., founder of the Burns Archive of photographic history and professor of medicine and psychiatry at NYU Langone Medical Center, Green-Wood Historian Jeff Richman, Evan Michelson, co-owner of Obscura Antiques & Oddities and host of the Science Channel’s Oddities, funeral director Amy Cunningham, Jessica Glasscock, Research Associate for the Metropolitan Museum of Art’s “Death Becomes Her” Exhibition, and more! 
    This symposium is organized in partnership with Joanna Ebenstein, founder of the former Museum of Morbid Anatomy and Laetitia Barbier, former librarian of the Museum. 

     $20 for members of Green-Wood and BHS / $25 for nonmembers

    'via Blog this'

    Sunday, June 4, 2017

    A Daughter Chronicles Her Parents' Final Months With Cancer : Shots - Health News : NPR

    "I picked up my camera and documented my parents' dual cancer treatments for the next 24 months and our lives as they unfolded. From the seven-hour chemotherapy infusions to running errands with Mom according to her to-do lists, I was there with my camera slung across my shoulder."

    A Daughter Chronicles Her Parents' Final Months With Cancer : Shots - Health News : NPR

    Friday, June 2, 2017

    "The Bright Hour": This year's 'When Breath Becomes Air.' - The Washington Post

    The Washington Post calls The Bright Hour by Nina Riggs, a woman who died of breast cancer at age 39, "a stunning work, a heart-rending meditation on life — not just how to appreciate it while you’re living it, but how to embrace its end, too."

    "Two days before she died, Nina Riggs made a request: Don’t be afraid to read my book. There’s good reason for such a plea. Her book, “The Bright Hour,” is a memoir about the last two years of her life. She completed it in January; she died the next month, at age 39, of metastatic breast cancer....In an email interview from a hospice in Greensboro, N.C., Riggs, who had two young sons, remained remarkably upbeat: “I think a real gift that this experience gave me was forcing me to appreciate my life/death, not just my life. I had to embrace the experience of having cancer, because that experience was part and parcel to my experience of my husband, my kids, my dearest friends. So I would say I really hope the book I wrote will make you feel much more joy than anything else.”
    "The Bright Hour": This year's 'When Breath Becomes Air.' - The Washington Post

    Thursday, June 1, 2017

    Rituals to Express and Process Grielf

    Embracing Personal Rituals

    A while back we asked WYG reader to share their personal rituals on our Facebook. We got so many amazing responses, things that speak to the unique and individual nature of the rituals that mean something to us. I’ve got lots of little ones, like the fact that I never turn down a piece of coconut cake. Whether it’s at a restaurant or a coffee shop, if it’s on the menu I order it. Because coconut cake always reminds me of my dad and family and childhood (even though I didn’t really like coconut cake then) so it is my own little private ritual, that can happen almost anywhere.

    Rituals people mentioned included drinking coffee from a late spouse's mug, celebrating the birthday of a daughter who died at 16 every year by eating her favorite dessert, and wearing the bracelets of a mother who is no longer here to family events she would have loved.

    My Father, Dying by Joyce Sutphen

    My Father, Dying
    by Joyce Sutphen

    It was hard work, dying, harder
    than anything he’d ever done.

    Whatever brutal, bruising, back-
    breaking chore he’d forced himself

    to endure—it was nothing
    compared to this. And it took

    so long. When would the job
    be over? Who would call him

    home for supper? And it was
    hard for us (his children)—

    all of our lives we’d heard
    my mother telling us to go out,

    help your father, but this
    was work we could not do.

    He was way out beyond us,
    in a field we could not reach.

    Thursday, May 25, 2017

    At His Own Wake, Celebrating Life and the Gift of Death - The New York Times

    Mr. Shields intended to die swiftly and peacefully by lethal injection, administered by his doctor. Last June, the Canadian government legalized what it termed “medical assistance in dying” for competent adult patients who are near death and suffering intolerably from irremediable illnesses. When his doctor, Stefanie Green, informed him that he qualified, Mr. Shields felt the first hope since a doctor told him more than a year before that he had a rare and incurable disease called amyloidosis, which caused proteins to build up in his heart and painfully damage the nerves in his arms and legs. 
    Having control over the terms of his death made him feel empowered over the disease rather than crippled by it, a common response among Dr. Green’s patients. Mr. Shields believed that dying openly and without fear could be his most meaningful legacy — which was saying something. The man had packed five lifetimes of service into one: He had been a civil rights activist, a social worker for children, the head of British Columbia’s biggest union and, most recently, the savior of a floundering land trust that included 7,191 acres of protected wilderness and historic properties.  
    His newly developed plan for how he would spend his last moments, though, worried his wife, Robin June Hood. Her husband had not left his bed once since he arrived at the hospice on a stretcher, 17 days earlier. His 78-year-old body had thinned; his voice dimmed. He lasted only 15 minutes in conversation before his eyes fluttered closed. Just leaving the room would exhaust him. She knew he could not make it to the restaurant, and there was no way she could tend to his needs at home, even for one night — especially his last. Happily, Dr. Green had become adept at brokering delicate family discussions over the past year.  She had presided over 35 deaths since the law passed, each intimately different from the next. One man got dressed in his amateur clown costume, complete with wig and red nose, and died telling her jokes. He had insisted on being alone in the room with her, but most of her patients died surrounded by loved ones. Many were too sick to devise elaborate rituals, but others had chosen the location, attendees, readings and music as if planning a wedding. Dr. Green called them something she picked up at a conference on euthanasia in the Netherlands: “choreographed deaths.”
    She arrived at Mr. Shields’s hospice room that day to finalize the plans. The couple held hands as she helped them stitch a compromise. On March 23, the last night of Mr. Shields’s life, they would host a party in the hospice solarium with Swiss Chalet takeout for all. The next morning, he would die in his hospice room. Then, his wife and stepdaughter would take his body home and lay it out in his beloved garden for two days. The plan, Mr. Shields said that afternoon, was “absolutely terrific.”

    At His Own Wake, Celebrating Life and the Gift of Death - The New York Times

    Wednesday, May 24, 2017

    Sheryl Sandberg and Elizabeth Alexander on Love, Loss and What Comes Next - The New York Times

    “When I meet a woman wearing a ring on a chain around her neck, I know immediately: member of the club,” Sheryl Sandberg said. “I never noticed before.” That club in question would be the unenviable one for people whose spouses have died. “What I loved about the chain was that I could put both our rings on it,” Elizabeth Alexander added. But these two club members, who met recently for breakfast, have more in common than jewelry.
    Both are young widows, and both found some comfort in writing about it.  Alexander says, "If you can stay at the bone of what’s true, then that’s your lifeboat."

    Sheryl Sandberg and Elizabeth Alexander on Love, Loss and What Comes Next - The New York Times

    Tuesday, May 23, 2017

    When my dad was dying, we forgot to ask him how he wanted to live | The Independent

     "When it comes to end of life care, we talk about dying. But in my experience, care at the end of life should not be not about death – it should be about life....Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face. They told us they’d visit sometime the next day. And so we waited. And Dad lost another precious opportunity to be out in the world he didn’t want to leave."

    When my dad was dying, we forgot to ask him how he wanted to live | The Independent

    Monday, May 22, 2017

    Coping With the Death of Old Friends and Siblings as We Age

    In her book, Lots of Candles, Plenty of Cake, author Anna Quindlen captures the significance of these relationships. “The thing about old friends is not that they love you but that they know you,” she writes.  On an intellectual level, I know that part of life is death, yet I struggle to reconcile this unfair, if inherent, consequence. “In the second half of our lives, we experience more losses,” says Alan Wolfelt, an author, grief counselor and founder of the Center for Loss and Life Transition. “With aging comes the inevitable deaths of those we love. It’s hard, yes,” he adds, “but it’s also a time of opportunity to live, love and mourn as fully as we can.” 

    Coping With the Death of Old Friends and Siblings as We Age:

    At the End of Life, A Way to Go Gentle

    "[Jessica Nutik Zitter] refers to the usual intensive care unit approach as the “end-of-life conveyor belt.” She argues that palliative care methods should be used to slow down and derail the typical destructive I.C.U. approach that often torments people it cannot heal....According to Dr. Zitter, even what are intended to be temporary intensive care measures can put a patient on that conveyor belt to anguish and isolation. She writes of breathing machines, feeding tubes, cardiac resuscitation, catheters, dialysis and a miserable existence prolonged within long-term acute care facilities. In an account of the evolution of her own ideas about doctoring, she also explains why it remains so difficult to change intensive care units so they can better serve the terminally ill." (About the new book, Extreme Measures: Finding a Better Path to the End of Life)

    At the End of Life, a Way to Go Gentle - The New York Times:

    My Vexing/Gratifying 7 Years of Caregiving | HuffPost

    "As a clinical psychologist specializing in helping families struggling with illness, I thought I had some idea of what I was getting into. But, looking back, I did only partially. Real-life caregiving for my mom was much more personal and perturbing, complex and challenging, gratifying and vexing than my clinical work or academic reading could have prepared me for. Like all family caregivers, I suffered growing pains but learned a great deal." This piece is filled with important insights.  One I especially appreciate is: "Anger is an unfortunate way to avoid sadness."

    My Vexing/Gratifying 7 Years of Caregiving | HuffPost

    Sunday, May 21, 2017

    The 11 qualities of a good death, according to research — Quartz

    "The literature review identifies 11 core themes associated with dying well, culled from 36 studies:

    • Having control over the specific dying process 
    • Pain-free status 
    • Engagement with religion or spirituality 
    • Experiencing emotional well-being 
    • Having a sense of life completion or legacy 
    • Having a choice in treatment preferences 
    • Experiencing dignity in the dying process 
    • Having family present and saying goodbye 
    • Quality of life during the dying process 
    • A good relationship with health care providers 
    • A miscellaneous “other” category (cultural specifics, having pets nearby, health care costs, etc.)"

    The 11 qualities of a good death, according to research — Quartz

    Friday, May 19, 2017

    I Know You Love Me — Now Let Me Die

    "We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had. We stopped seeing her, not intentionally perhaps, but we stopped. This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love. A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?” "

    I Know You Love Me — Now Let Me Die:

    Tuesday, May 16, 2017

    Hospice Doctor Describes What Happens The Moment After We Die | HuffPost

    “It’s such a profound, stunning moment to see the body finally as a shell and devoid of that person,” [Dr. B.J. Miller] says. “In that moment of transition around the body, you’re really in touch with the continuum of life, that life is proceeding. That individual is gone, but life goes on.”

    Friday, April 14, 2017

    Wind Telephone – Ōtsuchi-chō, Japan - Atlas Obscura

    "When Itaru Sasaki lost his cousin in 2010, he decided to build a glass-paneled phone booth in his hilltop garden with a disconnected rotary phone inside for communicating with his lost relative, to help him deal with his grief. Only a year later, Japan faced the horrors of a triple disaster: an earthquake followed by a tsunami, which caused a nuclear meltdown. Sasaki’s coastal hometown of Otsuchi was hit with 30-foot waves. Ten percent of the town died in the flood. Sasaki opened his kaze no denwa or “wind phone” to the now huge number of people in the community mourning the loss of loved ones."

    Wind Telephone – Ōtsuchi-chō, Japan - Atlas Obscura

    Thursday, April 13, 2017

    Sheryl Sandberg's New Book About Loss is Option B

    An excerpt from Option B, Sheryl Sandberg's new book about grief and loss: <P><P>

    In the early weeks after Dave died, I was shocked when I’d see friends who did not ask how I was doing. I felt invisible, as if I were standing in front of them but they couldn’t see me. When someone shows up with a cast, we immediately inquire, “What happened?” If your life is shattered, we don’t.

    People continually avoided the subject. I went to a close friend’s house for dinner, and she and her husband made small talk the entire time. I listened, mystified, keeping my thoughts to myself. I got emails from friends asking me to fly to their cities to speak at their events without acknowledging that travel might be more difficult for me now. Oh, it’s just an overnight? Sure, I’ll see if Dave can come back to life and put the kids to bed.

    I ran into friends at local parks who talked about the weather. Yes! The weather has been weird with all this rain and death.

    Many people who had not experienced loss, even some very close friends, didn’t know what to say to me or my kids. Their discomfort was palpable, especially in contrast to our previous ease. As the elephant in the room went unacknowledged, it started acting up, trampling over my relationships. If friends didn’t ask how I was doing, did that mean they didn’t care? My friend and co-author Adam Grant, a psychologist, said he was certain that people wanted to talk about it but didn’t know how. I was less sure. Friends were asking, “How are you?” but I took this as more of a standard greeting than a genuine question. I wanted to scream back, “My husband just died, how do you think I am?” I didn’t know how to respond to pleasantries. Aside from that, how was the play, Mrs. Lincoln?

    At first, going back to work provided a bit of a sense of normalcy. But I quickly discovered that it wasn’t business as usual. I have long encouraged people to bring their whole selves to work, but now my “whole self” was just so freaking sad. As hard as it was to bring up Dave with friends, it seemed even more inappropriate at work. So I did not. And they did not. Most of my interactions felt cold, distant, stilted. In the moments when I couldn’t take it, I sought refuge with my boss Mark Zuckerberg. I told him I was worried that my personal connections with our coworkers were slipping away. He understood my fear but insisted I was misreading their reactions. He said they wanted to stay close but they did not know how. The deep loneliness of my loss was compounded by so many distancing daily interactions that I started to feel worse and worse. I thought about carrying around a stuffed elephant but I wasn’t sure that anyone would get the hint. I knew that people were doing their best; those who said nothing were trying not to bring on more pain, those who said the wrong thing were trying to comfort. I saw myself in many of these attempts—they were doing exactly what I had done when I was on the other side. I thought back to a friend with late-stage cancer telling me that for him the worst thing people could say was, “It’s going to be O.K.” He said the terrified voice in his head would wonder, How do you know it is going to be O.K.? Don’t you understand that I might die? I remembered the year before Dave died when a friend of mine was diagnosed with cancer. At the time, I thought the best way to offer comfort was to assure her, “You’ll be O.K. I just know it.” Then I dropped the subject for weeks, thinking she would raise it again if she wanted to. Recently, a colleague was diagnosed with cancer and I handled it differently. I told her, “I know you don’t know yet what will happen—and neither do I. But you won’t go through this alone. I will be there with you every step of the way.” By saying this, I acknowledged that she was in a stressful and scary situation. I then continued to check in with her regularly. As people saw me stumble at work, some of them tried to help by reducing pressure. When I messed up or was unable to contribute, they waved it off, saying, “How could you keep anything straight with all you’re going through?”

    In the past, I’d said similar things to colleagues who were struggling, but when people said it to me I discovered that this expression of sympathy actually diminished my self-confidence. What helped was hearing, “Really? I thought you made a good point in that meeting and helped us make a better decision.” Bless you. Empathy was nice, but encouragement was better.

    I finally figured out that I could acknowledge the elephant’s existence. At work, I told my closest colleagues that they could ask me questions and they could talk about how they felt too. One colleague said he was paralyzed when I was around, worried he might say the wrong thing. Another admitted she’d been driving by my house frequently, not sure if she should knock on the door. Once I told her that I wanted to talk to her, she finally rang the doorbell and came inside.

    When people asked how I was doing, I started responding more frankly. “I’m not fine, and it’s nice to be able to be honest about that with you.” I learned that even small things could let people know that I needed help; when they hugged me hello, if I hugged them just a bit tighter, they understood that I was not O.K.

    Sheryl Sandberg: Read an Excerpt From Option B |

    Choosing To Die - A Personal Story -

    "Phyllis Shacter courageously shares the first personal story ever written about Voluntarily Stopping Eating and Drinking (VSED). This memoir and guidebook follows the journey she took with her husband, Alan, once he decided to VSED so he didn’t have to live into the late stages of Alzheimer’s disease. This is their love story, their partnership, the brave territory they traversed, including how they prepared themselves with proper medical and legal guidance when electing to VSED. Choosing to Die is filled with emotional depth and sensitivity as well as practical information outlining the process from beginning to end. Phyllis shares every detail, including what Alan experienced during the nine-and-a-half days it took for him to die, and how the experience transformed Phyllis. This book is for anyone who wants a deeper understanding of end of life choices, and especially for anyone who has been diagnosed with a degenerative disease. "

    Choosing To Die - A Personal Story -

    Tuesday, April 11, 2017

    I Learned The Hard Way That You Can't Take A Vacation From Grief | The Huffington Post

     "The thing about grief is that it follows you. It goes where you go, even when you try to shake it off your tail. It causes you to be unfocused, forget things, not really be present in the moment. In our case, it led us to miss a flight, lose a credit card, blow up at strangers, have panic attacks in crowded places, forget valuables in the hotel, and the coup d’grace ― have no clue which airport parking lot we had left our car in. In other tell-tale signs that we packed our grief in our suitcase: We suffered claustrophobia in museums and had to leave, grew unmanageably impatient waiting in lines, overslept and missed events, had little energy to meet up with friends and pretty much never got our bearings. Was our vacation fun? No, not really. But in hindsight, it was funny. And yes, there was good that came of our trip: We recognized the toll that grief is taking on us despite our ― my ― best efforts to keep it at bay."

    I Learned The Hard Way That You Can't Take A Vacation From Grief | The Huffington Post:

    Nurses Ignore Hospital Regulations To Grant Dying Man His Final Wish | The Huffington Post

     "After doctors at Aarhus University Hospital told Carsten Flemming Hansen that he was too sick for surgery and would die within days from internal bleeding following an aortic aneurysm, he revealed the final thing he wanted to do. And that was to smoke a cigarette and drink a glass of cold white wine outside, while watching the sun set. According to a post on the hospital’s Facebook account, nurses wheeled Hansen out onto a balcony on a bed last Tuesday and broke the building’s strict no-smoking policy by allowing him to light up. He then enjoyed a spectacular sunset as he sipped his drink, surrounded by close family and friends."

    Nurses Ignore Hospital Regulations To Grant Dying Man His Final Wish | The Huffington Post:

    Saturday, April 8, 2017

    Cancer Taught Me To Live Like I'm Dying | The Huffington Post

    "The best any of us can hope for is to know that it mattered that we were here—that we somehow made a difference for someone somewhere, that we created a special moment, a special memory for someone to cherish. And every day, we have a chance to create those moments for ourselves and for someone else, and it may well start with a seemingly innocuous greeting."

    Cancer Taught Me To Live Like I'm Dying | The Huffington Post

    Celebrating Life When Death Draws Near

    "So-called living funerals are "on the rise," says Denise Carson, author of Parting Ways (University of California Press, $35), which explores alternatives to traditional end-of-life mourning rituals. "Some look like a cross between a wedding and a funeral," she says. These celebrations provide an opportunity for someone who is near death to gather close friends and relatives and share memories. No rules or customs govern these get-togethers. They can take place anywhere, from a community center to a church or synagogue to a funeral home. "I've seen the honoree dressed in everything from a hospital gown to a tuxedo," Carson says. "Others are more somber, with prayers, psalms, anointing and last rites by clergy." Some attendees bring mementos, such as photos from a family vacation, or poems to recite. In the 1997 bestseller Tuesdays With Morrie by Mitch Albom, the book's subject, Morrie Schwartz, who knows his death is imminent, holds a living funeral in his home because he doesn't want to miss out on tributes to himself.

    Celebrating Life When Death Draws Near 

    How to Make a Shiva Call | My Jewish Learning

    "The great genius of Jewish bereavement is to empower the community to be God’s partner in comforting those who mourn. In making a shiva call in an appropriate and traditional way, we are the medium through which God’s comfort can be invoked. In learning the art of coping with dying, we are, in fact, learning an important aspect of the art of Jewish living."

    How to Make a Shiva Call | My Jewish Learning:

    Tuesday, April 4, 2017

    Funeral homes and the death industry are undergoing radical shifts toward DIY death — Quartz

    In the words of Amy Cunningham, a lecturer and in-demand funeral director in the New York City area, “We’ve mastered the wedding—but the funeral needs a lot of work....The funeral industry may have assumed it was safe from the whims of supply and demand; everyone dies, after all. But modern consumers are educating themselves and demanding more. If the funeral industry is to survive the 21st century, it will need to shed its old ways and begin to participate in open, frank discussions around what we truly want out of life—and death.”

    Funeral homes and the death industry are undergoing radical shifts toward DIY death — Quartz:

    Sunday, April 2, 2017

    Physical Intimacy and the Dying - SevenPonds BlogSevenPonds Blog

     "We do not lose our humanness and need for connection when we are dying. We may have to make adjustments, forego some aspects or find creative yet loving ways to maintain the connection in a way that affirms the loving relationship that was present before the illness. Human touch, however lovingly delivered, is a potent elixir."

    Physical Intimacy and the Dying - SevenPonds BlogSevenPonds Blog

    Friday, March 31, 2017

    A Hospice Nurse: "The Family Is Your Patient"

    In hospice, the family is your patient. They’re truly living their darkest days. For many of them, this admissions meeting is an overwhelming process. Every emotion that they have inside of them that maybe even hasn’t ever surfaced might come to the top. But I don’t want families to cry.

    During that first meeting I don’t say: “So this is what we do for people who are dying.” I say: “Hospice is not about dying. It is about living the remainder of your life how you want to. Not how I want you to, not how your husband, wife, daughters, or sons want you to, and not how the doctor wants you to, but how you want to.”

    If you think about the last time you went to the doctor, he probably said, “Okay, this is what I think. These are the tests I want to run.” Nobody asks you, “What do you think? Does this sound reasonable? Do you want to do it?” Nobody tells patients how their quality of life is going to go down the toilet when they get chemo. So it’s sometimes hard for patients to wrap their head around the idea that everything is their choice now, they’re driving the ship. That’s the mission of hospice.

    Monday, March 27, 2017

    Second chance to learn about death and dying through free online course - Palliative Care

    "Enrollments open today for a free, web-based course that allows people of all ages to learn about death and dying, and engage in supportive discussion.

    Dying2Learn is the second Massive Open Online Course (MOOC) to be offered by online palliative care resource CareSearch. The five-week course, which starts on 3 April, 2017 will have the same content as the Dying2Learn MOOC offered in the middle of last year.

     CareSearch research fellow Deb Rawlings says about 800 people actively participated in the previous MOOC, and many said they were surprised to have really enjoyed it. “You don’t go into this sort of thing thinking ‘I’m going to have a great time here’, but people did and they were surprised by how many like-minded people they met,” she says.

    Dying2Learn will have four modules:

    • How does today’s society engage with death and dying? How do we use language to describe it? What about the role of television and film? 
    • What does death ‘look’ like? How is death and dying portrayed in the media? 
    • If death is the problem, is medicine the answer? A look at what we die of, the role of medicine, and prolonging life versus prolonging death.    
    • Digital dying: Death during the internet-age."

    Second chance to learn about death and dying through free online course - Palliative Care:

    Eulogy for a Fairy Princess – Lisa Williams on the Woman She Loved

    "Whenever I came into her presence I’d feel a sense of relief and well-being wash over me. “It’s like I’m dating a character from a children’s book,” I said. Just a little unearthly. Don’t let yourself think that she wasn’t a grownup; she was responsible, scrupulous with money, prompt, hardworking. I once saw her Priority Mail her electric bill so it wouldn’t be late. But…she wasn’t quite like us....Children loved her. Don’t children always know the magic?

    Eulogy for a Fairy Princess – Medium

    Sunday, March 26, 2017

    John Kaag and Clancy Martin: Looking Death in the Face

    Philosophy professors John Kaag and Clancy Martin write eloquently about how a death 3000 years ago can inspire us to think about life.

    We tend to defer the question of living or dying well until it’s too late to answer. This might be the scariest thing about death: coming to die only to discover, in Thoreau’s words, that we haven’t lived.

    Facing death, though, is rarely simple. We avoid it because we can. It’s easier to think of “dying” as an adjective than a verb, as in a dying patient or one’s dying words. This allows us to pretend that dying is something that is going to happen in some distant future, at some other point in time, to some other person. But not to us. At least not right now. Not today, not tomorrow, not next week, not even next decade. A lifetime from now.

    Dying, of course, corresponds exactly with what we prefer to call living. This is what Samuel Beckett meant when he observed that we “give birth astride the grave.” It is an existential realization that may seem to be the province of the very sick or very old. The elderly get to watch the young and oblivious squander their days, time that they now recognize as incredibly precious.

    When dying finally delivers us to our unexpected, inevitable end, we would like to think that we’ve endured this arduous trial for a reason. Dying for something has a heroic ring to it. But really it’s the easiest thing in the world and has little to do with fame and fortune. When you wake up and eat your toast, you are dying for something. When you drive to work, you’re dying for something. When you exchange meaningless pleasantries with your colleagues, you’re dying for something. As surely as time passes, we human beings are dying for something. The trick to dying for something is picking the right something, day after week after precious year. And this is incredibly hard and decidedly not inevitable.

    A More Thoughtful "Handover Bag" for the Bereaved

    Whether someone dies in a hospital, hospice or residential aged care facility, it’s not unusual for their possessions to be passed back to their family in a plastic garbage bag. An End of Life Care Committee in Queensland has developed a more sensitive and respectful approach, which it hopes will be adopted nationally.

    The Committee, from Sunshine Coast Hospital and Health Service (SCHHS), developed handover bags, which are printed with a tree symbol designed to represent the cycle of life.

    “The aim of the handover bags is to convey to the family and staff that whilst the person was a patient with us, we cared for them and respected them,” says SCHHS principal project officer for End of Life Care, Wendy Pearse.

    “This care and respect begins the moment they arrive with us, until the time they leave. We will treat their belonging with the same care and dignity that we showed to the person who died.”

    The same purple symbol is printed on resources which can be given to families in the bag, including a bereavement card and a booklet titled “When someone dies…”. It also features on door signs which indicate to staff and visitors that a patient has died.


    Thursday, March 23, 2017

    At Green-Wood Cemetery, a Friendly Place to Talk About the End | Village Voice

    Amy Cunningham, wearing Buddhist prayer beads and rose-colored pom-pom earrings, prepared to lead the discussion. She's run the Brooklyn Death Café, an offshoot of the international movement to normalize conversations about death, since 2015. "These Death Cafés are, in our own way, bringing the dead back into our daily lives," Cunningham explained, "by visiting and communing with them and going to spaces like the crematory and seeing the urns in the wall. This is altogether a healthy and positive thing." Cunningham, who worked as a writer and editor for decades, became involved in the death industry after her own father's passing, with hopes of helping others cope with the passing of a loved one as her own funeral director had helped her. She is now an independent funeral director focused on eco-friendly burial and cremation. The cafés, which she leads as a volunteer, are another element of her practice. "I just thought it'd be a nice way to educate people," Cunningham says. "Death shouldn't be so scary. The more we move in toward death, the more we'll learn and put ourselves at ease about our own inevitable demise." 

    At Green-Wood Cemetery, a Friendly Place to Talk About the End | Village Voice:

    Sunday, March 19, 2017

    Hospice Chaplain Writes About Her Talks with the Dying

    "It took me a while to understand that talking about their family and their relationships within their family, their love relationships, was their way of trying to understand these larger spiritual questions.... We’re all meaning-making creatures. All our lives, this is what we’re doing, whether or not we realize it. If you think of these big spiritual questions — why am I here, what does it all mean, why am I suffering now? — those are really hard questions, and so we tend as human beings to want to talk about the abstract by thinking about concrete examples. When we talk about God as love, it’s really natural for people to think: What have my experiences of love been? And what do those experiences, good and bad, teach me about God?"

    Hospice Chaplain Writes About Her Talks with the Dying

    I Know You Love Me — Now Let Me Die

     A doctor writes about the mistake of "adding time but not life."
    When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could, and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.

    I Know You Love Me — Now Let Me Die

    Sunday, March 12, 2017

    Love After Loss

    We didn’t think Randy’s mother would thrive or even survive when she was widowed. Larry and she had also been together since they were teens. She wasn’t eager to move into a senior living community, but we wanted her to be closer to us, so we insisted. It took months for her to go from resentful to enthused. She made friends and signed up for chair yoga, current events, and every museum outing. She dyed her hair red. She was an energetic dumpling zipping around on her walker, usually with a banana or two tucked inside the seat. (When we flew to Chicago for my stepdaughter’s wedding, Ruth was stopped going through security. A gun-like object had appeared in the seat of her walker: a banana.)
    Then, over a hot bridge game, she met Otto, now 94 years old.
    He’d had so many illnesses and operations that even he couldn’t believe he was still alive. “I have no organs left,” he said. “I’m held together by pills.” By then, Ruth was back and forth to hospitals with heart problems. But that failing heart adored Otto. At night they’d take turns visiting each other’s apartments and watch reruns of Hogan’s Heroes, sometimes The Carol Burnett Show....
    Last December, when the doctor told Ruth that her heart had weakened, she said, “No more hospitals.” He explained that she would “most likely pass from this.” Her response: “I’ve led a blessed life. I’m ready to go home.”
    Hospice care was set up in her apartment. The way she wanted. When we received the early morning call from an aide saying that Ruth’s pulse had stopped, that she was gone, we hurried over to find hospice workers waiting in her living room. But it was a sobbing Otto who was sitting by her bedside, watching over her, until Randy and I arrived.

    Wednesday, March 8, 2017

    When is dying a laughing matter? Hospice humor gains a following -

    The therapeutic humor movement is catching on. Last year, the Minnesota Network of Hospice and Palliative Care, which serves Minnesota, Wisconsin, Iowa, North Dakota and South Dakota, closed its annual conference with a session from a humorist. And this year, the conference will open with a session on laughter yoga. “Laughter, of course, is a healthy thing,” said Susan Marschalk, the network’s executive director. “It’s certainly good for people who are caregivers. It’s really good for hospice providers and the people who are working with patients who witness people dying every day. They need laughter.” The connection between humor and health also is recognized by the Association for Applied and Therapeutic Humor. Based in Illinois, the group was started by a registered nurse and has members in Minnesota from various professions — including scholars, psychologists, nurses and doctors. Therapeutic humor is “any intervention that promotes health and wellness by stimulating a playful discovery, expression or appreciation of the absurdity or incongruity of life’s situations,” the group’s website says. “There is a very close relationship between laughter and tears,” said Mary Kay Morrison, president of the association and a self-described “neurohumorist.” “Laughter is a relief. When you laugh so hard that you cry, there is a close connection there. It’s something that brings relief from the stress and anxiety. “Even in hospice, I believe when someone is able to laugh about the situation, you know they are starting to accept it and starting to cope with it,” she said.  “Even in hospice, I believe when someone is able to laugh about the situation, you know they are starting to accept it and starting to cope with it,” she said.

    When is dying a laughing matter? Hospice humor gains a following -

    Monday, March 6, 2017

    Stages of Grief

    A post shared by Mari Andrew (@bymariandrew) on

    Intimacy | Richard Griffin

    Richard Griffin wrote a touching piece about how his conversations with a terminally ill friend have changed their relationship and opened him up to greater intimacy.

    My friend Frank (not his real name) answers his phone. He has this notoriously unreliable Bluetooth earpiece that he loves to use. Today it’s having a bad day. He sounds like a Martian. I tell him I’ll call back. When he answers the second time he’s no longer a Martian. I say, “Ah! It’s my old friend Frank – the one I know and love!” 
    This joke brings him to tears because he’s not my old friend Frank, he’s the new Frank. The one who is fighting a disease that will shorten his life dramatically. This sort of painful moment has become more and more common in our conversations. We’ve been doing these regular phone calls for several years now, starting long before the disease was discovered. In the beginning, our conversations were sometimes awkward, maybe even boring. But they were meaningful enough that we kept having them. Today, neither of us would give them up for the world. They have become a touchstone of sanity for us, a sanctuary from an increasingly chaotic and unpredictable world. We have discovered that we love these conversations and we love each other. 

    Intimacy | Richard Griffin :

    TED Talk: What I Learned from 2000 Obituaries

    Friday, March 3, 2017

    Stifled Grief: How the West Has It Wrong | The Huffington Post

    Michelle E. Steinke writes in the Huffington Post that we need to let go of our assumptions about grief:

    "I’m here to say that the West has the concept of grieving all wrong. I’d like to point out that we are a culture of emotionally stunted individuals who are scared of our mortality and have mastered the concept of stuffing our pain. Western society has created a neat little “grief box” where we place the grieving and wait for them to emerge fixed and whole again. The grief box is small and compact, and it comes full of expectations like that range from time frames to physical appearance. Everyone who has been pushed into the grief box understands it’s confining limitations, but all of our collective voices together can’t seem to change the intense indignation of a society too emotionally stifled to speak the truth. It’s become easier to hide our emotional depth than to reveal our vulnerability and risk harsh judgment. When asked if we are alright, it’s simpler to say yes and fake a smile then, to be honest, and show genuine human emotion.
     Let me share below a few of the expectations and realities that surround grief for those who are open to listening. None of my concepts fit into societies grief box and despite the resounding amount of mutual support by the grieving for what I write below, many will discount my words and label us as “stuck” or “in need of good therapy.”

    I’m here to say those who are honest with the emotions that surround loss are the ones who are the least “stuck” and have received the best therapy around. You see, getting in touch with our true feelings, embracing the honest emotions of death only serve to expand the heart and allow us to move forward in a genuine and honest way. Death happens to us all so let’s turn the corner and embrace the truth behind life after loss."

    Stifled Grief: How the West Has It Wrong | The Huffington Post:

    You May Want to Marry My Husband - The New York Times

    A dying woman writes about the husband she loves and her hopes that he will find love again.

    "No wonder the word cancer and cancel look so similar. This is when we entered what I came to think of as Plan 'Be,' existing only in the present. As for the future, allow me to introduce you to the gentleman of this article, Jason Brian Rosenthal. He is an easy man to fall in love with. I did it in one day."

    You May Want to Marry My Husband - The New York Times

    Saturday, February 25, 2017

    Nyack’s Newest Boutique Celebrates The Circle of Life with Focus on Eco-friendly Burial - Nyack, NY Patch

    A new boutique coming to Nyack will celebrate life by focusing on the green, ecologically-friendly aspects of death to rebirth. That’s right, death. It will happen to all of us. But that’s not news. Sometimes, the discussion of death, its circumstances and everything involved are difficult topics to address. However, there is a growing movement going back to the basics....

    Kerry Potter of Suffern has long been an advocate for a greener Earth. She is the founder the Rockland Community Foundation’s “Green Cemetery Fund” and is opening Dying to Bloom, her new, natural burial boutique, with a grand opening on February 25, 2017. The store is located at 48 Burd Street in Nyack, across the street from Squash Blossom. “I lost both of my parents in my twenties. At that time, we didn’t think twice about having them embalmed and entombed in a cement vault. As I became educated about the industry, I realized green burials fall more in line with my appreciation for the environment and the planet we leave for future generations. For what seems like an eternity, I have been looking for a way to help advocate and support the trend back to nature and simplicity. We’ve learned to make recycling cans, bottles and newspapers part of our everyday life. We should strive to do the same in death,” said Kerry Potter, Founder, Dying to Bloom.

    Nyack’s Newest Boutique Celebrates The Circle of Life with Focus on Eco-friendly Burial - Nyack, NY Patch:

    Friday, February 24, 2017

    This Unusually Frank Obituary Went Viral

    One of the milder selections: "Leslie was surprisingly intelligent, however he lacked ambition and motivation to do anything more than being reckless, wasteful, squandering the family savings and fantasizing about get rich quick schemes.  Leslie's hobbies included being abusive to his family, expediting trips to heaven for the beloved family pets and fishing, which he was less skilled with than the previously mentioned.  Leslie's life served no other obvious purpose, he did not contribute to society or serve his community and he possessed no redeeming qualities besides quick whited sarcasm which was amusing during his sober days."

    Leslie Ray Charping obituary. Carnes Funeral Home.:

    Wednesday, February 22, 2017

    Grief Brain: It’s a Real Thing! – thelifeididntchoose

    [W]hen brain imaging studies are done on people who are grieving, increased activity is seen along a broad network of neurons. These link areas associated not only with mood but also with memory, perception, conceptualization, and even the regulation of the heart, the digestive system, and other organs.  Prevention Magazine

    It’s not as bad now as it was in the beginning.
    But I still struggle to remember things that used to come easily.  I still hear words that I don’t always understand.  I depend much more on paper and pencil to keep track of important dates, appointments and phone numbers than I used to.  And I never walk away from the stove.
    If I make a lunch date with a friend, I ask that she message me the day before to remind me.  If I don’t comprehend what someone is saying, I request that they repeat it.  I keep a paper copy of important information in my purse and an electronic copy on my phone.
    It’s frustrating sometimes, but it is not a moral failure that my brain isn’t as sharp as it once was.
    What was embarrassing at first is now something I openly acknowledge. 
    I ask for help and I don’t apologize.

    Sunday, February 19, 2017

    First, Sex Ed. Then Death Ed. -

    Dr. Jessica Nutik Zitter writes that death ed is just as important as sex ed:
    I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. Too many of our patients die in overmedicalized conditions, where treatments and technologies are used by default, even when they are unlikely to help. Many patients have I.C.U. stays in the days before death that often involve breathing machines, feeding tubes and liquid calories running through those tubes into the stomach. The use of arm restraints to prevent accidental dislodgment of the various tubes and catheters is common. Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish. Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. We need to learn how to make a place for death in our lives and we also need to learn how to plan for it. In most cases, the suffering could have been avoided, or at least mitigated, by some education on death and our medical system. The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them. I am a passionate advocate for educating teenagers to be responsible about their sexuality. And I believe it is past time for us to educate them also about death, an equally important stage of life, and one for which the consequences of poor preparedness are as bad, arguably worse. Ideally this education would come early, well before it’s likely to be needed. I propose that we teach death ed in all of our high schools. I see this curriculum as a civic responsibility. I understand that might sound radical, but bear with me. Why should death be considered more taboo than sex? Both are a natural part of life. We may think death is too scary for kids to talk about, but I believe the consequences of a bad death are far scarier. A death ed program would aim to normalize this passage of life and encourage students to prepare for it, whenever it might come — for them, or for their families.

    First, Sex Ed. Then Death Ed. -

    Wednesday, February 15, 2017

    Katherine Arnup on Food, Love, and End of Life Care

    “Food is love”

    “Food is love,” my partner jokes as she unloads mountains of food from her latest trip to COSTCO. “I can’t help it! I’m Jewish!” she protests, when I wonder aloud how the two of us will ever manage to consume all that food.

    As the lineups at Super Stores attest, for a great many people being able to prepare and serve meals is a vital way of showing love.

    I never expected to encounter this among families caring for someone who is nearing the end of their life. But that is precisely what I see week after week at the residential hospice where I have volunteered for the past 15 years.

    When we are caring for someone who is seriously ill or dying, food can be one of the most important sources of comfort for caregiver and patient alike. No longer able to enjoy socializing or dinner at a restaurant, a person with a terminal illness may still enjoy a special meal, a treat, or even a dish of ice cream topped with Bailey’s Irish Cream. At the hospice, family members load the fridge with special items – meatloaf, lasagna, smoked salmon, pickled onions, cream puffs, chocolate chunk ice cream – anything to ensure that their friend or family member feels loved and catered to. This may be especially true if they are no longer able to provide care at home. Losing the caregiver role that has become central to their identity, they can at least still provide sustenance.

    When my sister was dying of metastatic melanoma, finding things that she might enjoy became my ongoing challenge. Whether because of the pain medication or the disease itself, Carol felt nauseous nearly every day. This was compounded by the fact that she was lactose intolerant, allergic to many foods, and was perpetually constipated (the result of the opioids she was taking.) Not surprisingly, she was reluctant to eat or drink. I scoured specialty grocery stores in vain searching for something besides ginger ale that she could tolerate.

    When someone is dying, they will gradually eat and drink less and less until finally they may be unable to tolerate any food and drink as their organs shut down. This stage can be extremely alarming for family members. A wife who has cooked special meals for her husband in hopes that he would keep up his strength may be devastated when he turns away from her special soup. “My husband is so stubborn I could kill him,” one woman blurted out in frustration. She would have nothing to do with my explanation that his unwillingness to eat might be the natural outcome of the disease process.
    The son or daughter who has been bringing supper to their mother throughout her illness may feel lost without that tangible demonstration of their love. A mother or father, caring for their seriously ill or dying child, may feel as if there is nothing else they can do.

    In the final stages of life, food and drink can prove to be fatal. A patient who has difficulty swallowing may aspirate even a tiny piece of the food or liquid, causing pneumonia and even death. For patients with a bowel obstruction, any amount of food can cause pain, bloating, and even a perforated bowel.

    To prevent such outcomes, it is important for health care providers to explain the dying process to family members and caregivers. Reassure them that refusing food and drink is a natural occurrence at the end of life, not a rejection of their love. They are welcome to offer sips or tastes but they must never attempt to force their loved one to eat or drink.

    As I learned from my caring for my sister, providing food is not the only way to show your love. Your presence – calm, patient, loving – is by far the most important gift you can provide. Watching a movie, reading aloud, playing music or singing – all are ways to ease their journey and demonstrate your love. In the final phase of life, being present is much more important than doing.

    Katherine Arnup PhD is a writer, speaker, caregiver, hospice volunteer and retired university professor. Her most recent book, I don’t have time for this!” A Compassionate Guide to Caring for Your Parents and Yourself, is available on Amazon.

    She blogs about life and death at Hospice Volunteering.

    Thursday, February 9, 2017

    'I know they are going to die.' This foster father takes in only terminally ill children - Chicago Tribune

    The children were going to die. Mohamed Bzeek knew that. But in his more than two decades as a foster father, he took them in anyway — the sickest of the sick in Los Angeles County’s sprawling foster care system. He has buried about 10 children. Some died in his arms. Now, Bzeek spends long days and sleepless nights caring for a bedridden 6-year-old foster girl with a rare brain defect. She’s blind and deaf. She has daily seizures. Her arms and legs are paralyzed. Bzeek, a quiet, devout Libyan-born Muslim who lives in Azusa, just wants her to know she’s not alone in this life.  “I know she can’t hear, can’t see, but I always talk to her,” he said. “I’m always holding her, playing with her, touching her. … She has feelings. She has a soul. She’s a human being.”

    'I know they are going to die.' This foster father takes in only terminally ill children - Chicago Tribune

    Sunday, February 5, 2017

    Thinking/Talking About Death Makes You Feel Better, Not Worse

    Christine Colby has an excellent post that explains how talking and thinking about death can increase your sense of control and calm -- for those who are dying, those around them, and those who are going to die some day, meaning everyone:

    Andrew Kneier, a clinical psychologist who works with cancer patients, shares that often the dying want to speak of what is happening to them, but that their friends and loved ones don’t give them the space to do so, urging them to remain positive and hopeful, and “fight.” In a study he performed at the UCSF Comprehensive Cancer Center, which he discusses in his book Finding Your Way Through Cancer, he was able to discern six main factors continuously mentioned by his patients as they came to terms with their impending deaths:

    Gratitude for their lives and positive experiences
    Pride in accomplishments
    Faith or spirituality
    Making changes in order to be more at peace when death comes
    Their legacy, or positive contributions to others
    Loving and being loved
    He emphasizes that these were the topics privately consuming his patients, who had felt unable or unwelcome to discuss the topics with their families and loved ones.

    I find that terribly sad, and it just validates that accepting, embracing, and, yes, maybe even obsessing about death is an important and valuable part of life.

    Read about death. Learn about death. Think about death. Make decisions about your own death. Ask your friends and loved ones about their deaths. And if at all possible, do what you can to assure that you die a Good Death.

    Christine Colby@batgrrlnyc
    Christine Colby is a writer/editor specializing in the darker side. She has been a speaker at Death Salon L.A. and Death Salon Mütter Museum, and was a founding member of the Morbid Anatomy Museum.

    Have Your Wishes For Care Known Before A Health Crisis Strikes : Shots - Health News : NPR

     "I found myself wishing we could just stop our full-court press on Helen. The humane thing to do, it seemed to me, would be to stop aggressive medical treatment and let nature take its course. After nearly two weeks of intensive care with no improvement in her condition, Helen's daughter instructed us to stop the mechanical ventilator. She died an hour later. Stories like Helen's occur in ICUs all over the country every day, unfortunately. Often these situations are flashpoints of tension between the hopes and expectations of families and the realities seen by the medical team. But it doesn't have to be this way. If we lessen the stigma around death as an unmentionable topic by forcing ourselves to talk to our loved ones about what we want at the end of life, we can vastly diminish the amount of energy and suffering that come with trying to prolong life when nature tells us otherwise."

    Have Your Wishes For Care Known Before A Health Crisis Strikes : Shots - Health News : NPR

    Wednesday, January 25, 2017

    We Don’t Know Death: 7 Assumptions We Make about Dying ~ Pallimed

    A thoughtful perspective on assumptions about death -- that people do not want to be alone when they die, that families want to be there, that we should tell people to "let go."

    "As a bereavement counselor, you see so many cases where people feel guilty for “not being there.”  It can be helpful to set the expectation early that dying is a private experience and the person may die when family and friends are not there. We discuss how their loved one may not be able to “let go” while they are there. This information can help caregivers to take the pressure off themselves."

    We Don’t Know Death: 7 Assumptions We Make about Dying ~ Pallimed:

    PBS: Alzheimer's: Every Minute Counts

    Alzheimer’s: Every Minute Counts, premiering January 25, 2017, at 10pm ET, is an urgent wake-up call about the national threat posed by Alzheimer’s disease.

    Sunday, January 22, 2017

    Your Parent has Just Been Diagnosed with Alzheimer's -- What Do You Do Now?

    NextGen has a very reassuring and constructive checklist for that very difficult moment when the person who has always seemed to be able to take care of you suddenly needs care because your parent has been diagnosed with Alzheimer's. It includes the following:

    Get professional assistance in coordinating care by finding geriatric care managers and doctors specializing in dementia.

    Locate adult day care services (where you take your parent for a period of time) or respite care services (people who come into the home). Investigate the memory care facilities in the area, so you know what is available and what costs are involved if it becomes necessary to move your parent.

    Think about your social networks. Are there people, perhaps at your place of worship or in your mom’s friendship circle, who can help with errands, meals, home maintenance tasks and other necessities?

    Look for support groups. Caring for a family member with Alzheimer’s is demanding, exhausting and eventually all-consuming. It can be a tremendous benefit to talk with others in the same situation.

    At the same time, start gathering your parent’s important documents and data, including things such as:

    certificates of birth, marriage and divorce
    last will and testament
    health care directives
    power of attorney papers
    veteran’s papers
    Social Security number
    car title and keys
    home deed or mortgage papers
    all personal and property insurance policies
    pension and/or 401(k) account information;
    names of service professionals (banker, lawyer, estate planning attorney, financial adviser, insurance agent, doctors, etc.)
    employer documents
    Ensure you also know passwords to parent’s computer, cell phone and all online and social media accounts. Keep all these in a secure and centralized location.

    And -- collect memories while you can. People with memory loss often hold onto their long-term memories. Ask questions and record the answer.

    Thursday, January 12, 2017

    The Grieving Need You Most After the Funeral | john pavlovitz

    "The early days of grief are a hazy, dizzying, moment by moment response to a trauma that your mind simply can’t wrap itself around. You are, what I like to call a Grief Zombie; outwardly moving but barely there. You aren’t really functioning normally by any reasonable measurement, and so that huge crush of people is like diverting thousands of cars into a one lane back road—it all overwhelms the system. You can’t absorb it all. Often it actually hurts. This usually happens until the day of the funeral, when almost immediately the flood of support begins to subside. Over the coming days the calls and visits gradually become less frequent as people begin to return to their normal lives already in progress—right about the time the bottom drops out for you. Just as the shock begins to wear off and the haze is lifted and you start to feel the full gravity of the loss; just as you get a clear look at the massive crater in your heart—you find yourself alone. People don’t leave you because they’re callous or unconcerned, they’re just unaware. Most people understand grief as an event, not as the permanent alteration to life that it is, and so they stay up until the funeral and imagine that when the service ends, that somehow you too can move ahead; that there is some finishing to your mourning."

    The Grieving Need You Most After the Funeral | John Pavlovitz

    Wednesday, January 11, 2017

    What I've Learned From Grieving Parents | The Huffington Post

    Jessica Kidd founded the nonprofit Gracie’s Gowns to donate personalized hospital gowns to children battling life-threatening conditions. With years spent working in pediatric emergency services, Jessica realized that children would often go without clothing due to the limited sizing and harsh texture of hospital gowns. Inspired by Grace, a friend’s child battling pediatric cancer, Jessica began creating and donating customized gowns in kid-friendly sizes and materials. She writes in the Huffington Post about what she has learned. Highlights include:

    "1. There is no correct way to grieve. Despite turning to elicit drug abuse, alcoholism, or any other addiction that puts ones personal safety in danger, no one can tell you how to grieve. Sure there are thousands of therapists and counselors, even many more thousands of self-help books, the personal accounts and suggestions of others, and the list goes on...but the way you will end up grieving the passing of your child is entirely up to you. 2. Grieving is not something negative. Not only is it not a negative, but it is healthy. It shows that you have loved your child is such a way that no one else could. Grief doesn’t always come out all at once, in fact it usually comes out in bit by bit when certain moments, songs, smells, memories, and even just hearing their name triggers it. It’s okay to take that moment to feel that pain all over again. Try to appreciate those moments. 3. Home is not a location, or even an address. Many of you reading this your home wasn’t one particular place, in fact, home was found wherever you felt the safest, the place that brings to surface the emotions you’ve buried, and even brings back the memories you may have forgotten. PTSD is real in parents of children with complex medical needs, but as much as the hospital setting triggers those emotions, it is also the place many call home. The memories are bittersweet, the emotions are real and very raw, but within those walls were also some of your greatest victories."

    What I've Learned From Grieving Parents | The Huffington Post

    Friday, January 6, 2017

    Death and STUFF | The Order of the Good Death

    "Inanimate objects will not, in any meaningful way, survive us. It took me a while to notice but minimalism is strongly tied to death acceptance. Acquisition is death denial. To acquire is to fortify yourself, expand yourself, make yourself unmovable, unwashawayable. To accumulate is to live as if you’re not going to die. "

    Death and STUFF | The Order of the Good Death:

    Complaint by James Wright

    by James Wright

    She’s gone. She was my love, my moon or more.
    She chased the chickens out and swept the floor,
    Emptied the bones and nut-shells after feasts,
    And smacked the kids for leaping up like beasts.
    Now morbid boys have grown past awkwardness;
    The girls let stitches out, dress after dress,
    To free some swinging body’s riding space
    And form the new child’s unimagined face.
    Yet, while vague nephews, spitting on their curls,
    Amble to pester winds and blowsy girls,
    What arm will sweep the room, what hand will hold
    New snow against the milk to keep it cold?
    And who will dump the garbage, feed the hogs,
    And pitch the chickens’ heads to hungry dogs?
    Not my lost hag who dumbly bore such pain:
    Childbirth at midnight sassafras and rain.
    New snow against her face and hands she bore,
    And now lies down, who was my moon or more.

    Sunday, January 1, 2017

    Kahlil Gibran: Free the Breath from its Restless Tides

    Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honor. Is the shepherd not joyful beneath his trembling, that he shall wear the mark of the king? Yet is he not more mindful of his trembling? For what is it to die but to stand naked in the wind and to melt into the sun? 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? Only when you drink from the river of silence shall you indeed sing. And when you have reached the mountain top, then you shall begin to climb. And when the earth shall claim your limbs, then shall you truly dance.
    From The Prophet by Kahlil Gibran"

    Tagore: Let The Time for Parting Be Sweet

    Peace, my heart, let the time for the parting be sweet. Let it not be a death but completeness. Let love melt into memory and pain into songs. Let the flight through the sky end in the folding of the wings over the nest. Let the last touch of your hands be gentle like the flower of the night. Stand still, O Beautiful End, for a moment, and say your last words in silence. I bow to you and hold up my lamp to light you on your way. ~ Rabindranath Tagore"

    Death, Dying, Grief | Allspirit