Wednesday, June 28, 2017

Poem: Reflections on Life: Grief

I had my own notion of grief. I thought it was the sad time That followed the death of someone you love. And you had to push through it To get to the other side. But I'm learning there is no other side. There is no pushing through. But rather, There is absorption. Adjustment. Acceptance. And grief is not something you complete, But rather, you endure. Grief is not a task to finish And move on, But an element of yourself- An alteration of your being. A new way of seeing. A new definition of self. ~ Gwen Flowers ~"

Reflections on Life: Grief - A Poem that Resonates

Monday, June 26, 2017

Poem: Plentitude by Ann Iverson


Even near the very end
the frail cat of many years
came to sit with me
among the glitter of bulb and glow
tried to the very last to drink water
and love her small world
would not give up on her curious self.
And though she staggered — shriveled and weak
still she poked her nose through ribbon and wrap
and her peace and her sweetness were of such
that when I held my ear to her heart
I could hear the sea.

Saturday, June 24, 2017

24 Deeply Honest Confessions From A Hospice Worker

They want you to know: they love their jobs, they care for families as well as patients, and they will do everything they can to ease someone's passing.

"We feel like we've done our job well if our patient passes away in the place and manner they chose (many people want to die at home in their own bed). And, crucially, without pain. It make us feel better if we know we've achieved that."

24 Deeply Honest Confessions From A Hospice Worker

A Dying Woman on Deconstructing Death

To start the process of grasping my fears surrounding death, I first had to ask: Is it possible to create a good relationship with death? And in order to create a good relationship with it, well, perhaps we need to understand why we have such a bad relationship with it. 
I personally see four major reasons to feel uncomfortable about death. All of them associate with fear. Fear of the dying itself, fear of what lays beyond death, fear of the life we will never live, and fear for those we leave behind. 
At this point, I believe I’ve come to peace with three out of the four. But I had to ask (and continuously have to ask) myself the following questions:
1. What is dying? 
...The way that most of [the books] describe death is not as the opposite of life, but the opposite of birth. I think this shift in language—this shift in the juxtaposition of life and death—is important. 
It is an entirely different concept. It suggests that we walk into a room and we walk out of a room, not that the room disappears. 
2. What comes after death? 
Since this is the most uncertain part of the equation, this question can bring about the most fear. Do we fear an almighty man in the sky? Burning for all eternity? That, maybe, this is it? Religion, upbringing, what we’ve experienced, what we’ve watched, and what we’ve read all play into what we believe happens after death. But the reality is, no one knows for certain. Beliefs, faith, and religion aside, really no one can say without a shadow of a doubt what happens when we die. 
In this thought, some people hold fear, and some people hold peace.  For me, this is the most fun part. As a nonreligious, but spiritual person, this is a playground of opportunity. I personally don’t hold a fear for this. Rather, I see the space beyond death as a a beautiful existence where our beings no longer hold their human form. I acknowledge my brain doesn’t have the capacity to understand this fully, and therefore I don’t try too hard to create an image or definition to coincide, rather just a feeling. This is the part of death I feel to be the most reassuring, warm, and whole. It’s the presence that gives full peace.
3. Are we afraid of the things you will miss out on, the things we never did, or the things we’ll never do?
This fear is actually comprised of regret. These are the things in life we always thought we’d achieve or have the time for. The places we wanted to go. The people we wanted to meet. The food we wanted to eat. The adventures we wanted to take. This is bucket-list stuff, and is constantly shifting....At 21, my initial diagnosis left me thinking I’d never graduate from college. A year later, I graduated with my class. At 23, just two weeks after finding out my cancer had returned, I stood next to my beautiful sister-in-law as she married my brother. I cried a good amount, most tears were of joy, but some of the salty droplets fell from the thought that I may never live long enough to get married. A year passed, and I did.....I think part of that acceptance is the realization that it isn’t those big “achievements” that were my favorite parts of life thus far....Maybe if we break it down into the little things about it we can start to get on the same level as it. Maybe we can start to repair this broken relationship with death.
4. Do we hold a fear for those we’ll leave behind? 

Currently, this is my greatest fear associated with my own death. I fear for the pain inflicted on those who will heavily feel my void. I am trying to remedy this by reminding them that my purpose here may be just that: a reminder. A reminder and an inspiration....
I suppose a more complicated question then becomes: How do we better our relationship not only with our own death, but with the death of others? And I’m starting to think this is a full circle concept. If we better our relationship with our own death, we better our relationship with the death of others....

I think as we visit and revisit each of these four major parts of death, we continue to delve deeper and deeper into a peace with it. A peace with our own death, a peace with the death of others, and a life more fully lived.

Deconstructing Death as a Dying Woman 

Bowel cancer diagnosis: ‘Please stop telling me to keep fighting’

We all have a hard time finding the right words.  Here are some very helpful ideas.

"I know it’s hard to know the right thing to say, so what should you say to someone with cancer? Often a simple “I’m sorry, I don’t know what to say” is enough. We don’t need (or want) to hear that “everything will be OK” because you don’t really know that, do you? Continue to talk how you would normally talk, before cancer entered our lives, because I am still that same person you know and love. I crave non-cancer related conversation, and I still want to hear about your day, I still want to talk about normal everyday things. Try and put your words more into actions. Offer home cooked meals or freshly baked goods, drop old magazines or books on my doorstep, or offer to come to an appointment with me. Your shoulder to cry on, your listening ears, your mere presence is enough. Let me be angry with the world, agree with me when I say that life is cruel and unfair. The best thing that you can do, is to simply be present. Whether it’s phone calls, text messages or visits, knowing that you are still by my side is the best thing I could ever hope for."

Bowel cancer diagnosis: ‘Please stop telling me to keep fighting’

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.