A Collector of Hugs | Moments of Life

Sophie Whitlock, Hospice of Bristol Hospital - Hospice Nurse: A collector of hugs, that's what  I am With hope  in my heart, and love in my hands Each hug is different, not one is the same Each has an owner, a story,  a name There's a hug for the time When things seem  so bleak And a hug for the one Whose body  is weak There's a hug for support To get through the day And a hug to bring  peace When you feel you lost your  way There's a hug for the tears That silently fall And a hug to bring comfort Sweet comfort to all There's a hug that  says, "I love you," And, 'Til be right here," And a hug for the  burdens That you must  bear There's a hug for the hope That will never  die And a hug for the  journey When it's time  to say, "Good-bye" A collector of hugs I'll continue to be The future will look brighter Just hug, and you'll see"

A Collector of Hugs | Moments of Life

Death -- Becoming a Sunset

"I think death might be something like staring at a sunset, and then becoming that sunset."

Huston Smith

The widowhood effect: What it’s like to lose a loved one so young - The Globe and Mail

"The widowed are two and a half times more likely to die by suicide in the first year of widowhood than the general population. We are, in fact, more likely to die of many causes: heart attacks, car accidents, cancer, many seemingly random afflictions that are not so random after all. There’s a name for this in the scientific literature: the widowhood effect. It’s dated now but a 1986 paper in the British Medical Journal explored death after bereavement. It opens atypically for a scientific paper: “The broken heart is well established in poetry and prose, but is there any scientific basis for such romantic imagery?” Indeed, there is, according to the author. He found that a strong association exists between spousal bereavement and death."

The widowhood effect: What it’s like to lose a loved one so young - The Globe and Mail

91-year-old man knits hats for the homeless

When you reach the end of your life, what will go through your mind? Which areas of your life will you scrutinize and take inventory? Will you evaluate whether or not you were a good son, sibling, father and friend? Maybe you’ll think about the accomplishments you accumulated or, perhaps, some of the failures and shortcomings. Others may focus exclusively on the end, lean on their faith, and concentrate on what they believe is to come in the afterlife. Morrie Boogaart knows he’s nearing the end of his life. The 91-years old is currently a resident at Cambridge Manor assisted living facility in Grandville, Michigan. He’s barely mobile, spending every day bedridden. Family members visit him regularly, but when they leave, Morrie is left with his life-long memories to stimulate him. A well-worn bible sits innocently on his nightstand, and hanging on one of his walls is an 8x10 photo of his wife Donna Mae, who passed away 16 years ago. “I had a good life,” said Boogaart, while he slowly wraps yarn around his spindle. “I have always accepted what I had in life, and this is now what it is for me.” Right next to Morrie’s nightstand is a pile of brown boxes stacked on top of each other. None of the boxes can be closed because each one is overflowing with more yarn. “I just like to do it,” said Morrie, as he continued knitting. “My eyes aren’t as good as they used to be, but I can still do this.” Boogaart wakes up every morning and starts knitting. He doesn’t stop knitting until he falls asleep at night. This happens all day, every day. “This is my life,” said Morrie. “I have always liked to helped people, and I’m not going to stop now. “We all need a sense of purpose.” Morrie knits hats, and since he started doing it nearly 15 years ago, he claims to have knitted at least 8,000 of them.

“That’s why most people call me the ‘Hat Man,’” he said."

91-year-old man knits hats for the homeless

"Compassionate Admission" Allows Wife of 73 Years to Share a Bed With Her Dying Husband

The Washington Post reports:

For 73 years — through wars in Europe and Asia and civil rights battles at home, through the assassination of a president and the rise of rock-and-roll — they shared a bed.

He’d be gone sometimes, flying missions during World War II and the Korean and Vietnam wars, but he always came back to her.

So now, as he lies in a hospital bed unable to say or do much, she lies beside him.

Like many hospitals, Fort Belvoir Community Hospital, where retired Army Col. George Morris, 94, is receiving end-of-life care, allows family members to sleep in a patient’s room on a foldout couch. But for George’s wife, Eloise, 91, a cancer survivor who has suffered two broken hips and a broken shoulder, that would be hard.

So the hospital made a special exception when they admitted him this month: They admitted her as a patient, too — a “compassionate admission,” their doctor calls it.

After a 73-year union, ailing couple finds two hospital beds pushed together offer the best comfort

Cindy Stowell's Bucket List: Raising Money and Awareness on Jeopardy

PBS: Seven Songs for a Long Life

Coming to PBS: Seven Songs for a Long Life, about music and dance as a part of palliative and hospice care.

What people talk about before they die - CNN.com

"I visit people who are dying -- in their homes, in hospitals, in nursing homes. And if you were to ask me the same question -- What do people who are sick and dying talk about with the chaplain? -- I, without hesitation or uncertainty, would give you the same answer. Mostly, they talk about their families: about their mothers and fathers, their sons and daughters. They talk about the love they felt, and the love they gave. Often they talk about love they did not receive, or the love they did not know how to offer, the love they withheld, or maybe never felt for the ones they should have loved unconditionally. They talk about how they learned what love is, and what it is not. And sometimes, when they are actively dying, fluid gurgling in their throats, they reach their hands out to things I cannot see and they call out to their parents: Mama, Daddy, Mother.

What I did not understand when I was a student then, and what I would explain to that professor now, is that people talk to the chaplain about their families because that is how we talk about God. That is how we talk about the meaning of our lives. That is how we talk about the big spiritual questions of human existence.

We don't live our lives in our heads, in theology and theories. We live our lives in our families: the families we are born into, the families we create, the families we make through the people we choose as friends.

This is where we create our lives, this is where we find meaning, this is where our purpose becomes clear.

Family is where we first experience love and where we first give it. It's probably the first place we've been hurt by someone we love, and hopefully the place we learn that love can overcome even the most painful rejection. This crucible of love is where we start to ask those big spiritual questions, and ultimately where they end."

What people talk about before they die - CNN.com

Many patients miss out on palliative care assessment before feeding tube placement, study finds - McKnight's Long Term Care News

"The majority of hospitalized patients who undergo feeding tube placement do so without receiving a palliative care assessment first, a recent study has shown. Researchers with Rutgers New Jersey Medical School analyzed the records of more than 200 patients who received a feeding tube, and found that only 12% had a palliative care assessment prior to the procedure. That number may be even lower across wider samples since Rutgers has a “strong palliative care presence,” lead researcher Ana Berlin, MPH, M.D., told Reuters on Tuesday. Patients at other hospitals who do receive an assessment often have lower rates of gastrostomy tube placement, Berlin said. Many patients are put on a feeding tube in order to be discharged to a long-term care facility, Berlin added. But between patients who are unable to make decisions for themselves, and family members who receive information on the procedure in technical terms that don't address quality of life issues, the tube can hinder patients' post-acute care goals."

The Case For Incorporating Spiritual Care In Medicine | The Huffington Post

"I asked them, ‘What are your deepest concerns?’ The husband started sobbing and said, ‘I think she’s going to die, and I don’t know what to do without her.’” The wife, Puchalski said, expressed fear over how her death would come about and whether she would suffer at the end. “They just cried, and I sat with them. We’d gotten to the heart of the visit, and it wasn’t about the medication or the pain. The real issue was the bereavement and the fear of losing each other.” Sometimes, Puchalski noted, the most crucial thing a doctor can offer a patient is their presence and a willingness to listen. With these tools doctors can attend not only to their patient’s physical needs but to their spiritual concerns as well, she said."

The Case For Incorporating Spiritual Care In Medicine | The Huffington Post

A lesson on life’s end: How one college class is rethinking doctor training

"The class, called Life at the End of Life, places students with medical aspirations — before they even apply to medical school — with patients at the Terence Cardinal Cooke Health Care Center (TCC), a nursing home in Harlem. The students enter the doors of the clinic knowing that their patients will not get better, and likely never leave. In an increasingly tech-enabled medical profession, where death is postponed as long as possible, the class challenges pre-med students to confront that ultimate reality, and to learn how to guide patients and their families through it. And along the way it’s challenging their field’s hidebound distinction between medicine and palliative care — between doing everything to keep someone alive, and helping them die with dignity."

A lesson on life’s end: How one college class is rethinking doctor training:

With green caskets, a more earth-friendly end - The Boston Globe

"[Eco-casket maker Ruth] Faas says we bury more than enough metal in the United States every year to rebuild the Golden Gate Bridge. The Green Burial Council writes on its website that “each year, the US buries over 1.6 million tons of reinforced concrete – roughly 1-2 tons per vault, plus imported steel from China and exotic woods from rainforests in South America, creating a significant total of carbon emissions.”"

With green caskets, a more earth-friendly end - The Boston Globe:

Claire Wineland at Zappos All Hands Meeting

19 year old Claire Wineland has cystic fibrosis, a chronic and progressive disease. She is using social media to tell the world that you can not only have a great life despite pain and suffering but because of it. "The people who have been through the most are the people with the most to give."

Dealing with Grief in the Holidays

The holiday season can be a minefield for those who are grieving, even if the loss is not recent.  The holidays bring back sweet but painful memories of happier times that sharply remind us of what we no longer have.  And there is a deep disconnect with a world that seems to be uncomplicated and joyful.  Rhonda O’Neill writes about the "fog of grief" during the holidays

[W]hy am I still surprised a decade later, when my mostly healed heart, breaks back open during the holidays like clockwork? Just what is it about the holidays that brings the pain of our loss back to the forefront of our hearts? And how can we be more prepared to deal with the unexpected pain?

Our society puts a lot of money, emotion, and time, into the winter holidays. Holidays are advertised as joyous occasions where we gather together and celebrate with family and friends. Everywhere you look there are reminders that the holidays are the ‘most wonderful time of the year.’ But, after loss, holidays don’t feel so wonderful anymore. In fact, they can be downright debilitating.

Some of her suggestions: "Be kind and patient with yourself." Acknowledge that it is difficult. Reach out to help others. Make an effort to do things that give you happiness. Don't let yourself get isolated. But say no when you need to. Cherish your memories. And "Sometimes volunteering or helping someone else in need can bring joy to our broken hearts. If you find joy in giving, find a way to balance giving to others in need, without draining yourself physically or emotionally."

Patton Oswalt's Year Of Magical Parenting | GQ

Patton Oswalt on being a single father after the death of his wife: "I'm going to keep going forward, looking stupid and clumsy and inexperienced at first, then eventually getting it, until the next jolt comes, and the next floor drops out from under me, until there are no more floors."

Patton Oswalt's Year Of Magical Parenting | GQ

The Most Creative People Are Also the Least Afraid of Death -- Science of Us

"For people who prized creativity, having more creative accomplishments under their belts meant they were relatively chill about that whole death thing, even after they’d been forced to imagine themselves passing away.  To put it more simply: If you feel your purpose in life is to make something that will outlive you, it doesn’t matter as much that your body’s only temporary; indirectly, some part of you will still be sticking around. “The current findings support the notion that creative achievement may be an avenue for symbolic immortality, particularly among individuals who value creativity,” the researchers wrote. We’re all going to die one day, a fact that’s easier to swallow if you plan on leaving something behind."

The Most Creative People Are Also the Least Afraid of Death -- Science of Us:

Memorywell: Helping Memory Loss Patients By Telling Their Stories

Memorywell has journalists speak to memory care patients and their families to help caregivers understand and help them.

Moving my dad into long-term Alzheimer’s care was one of the hardest days of my life. And in the months and years that followed I was desperate to find better ways to ensure his nursing staff understood him like I did. None of his homes offered me any tools to provide a better experience for him when I was away.

MemoryWell grew out of that experience. As a journalist, I wrote his story down. His caregivers loved it because now they could understand my father so much better, and soothe him in tense moments by recalling for him family names or poignant details about his life. His near-daily rages subsided, and he got along better with his nurses. Capturing his story made all of that possible.

There are so many stories out there that we are losing every day. Our web-based platform makes your loved one's stories and favorite digital photos, music, and videos easily available to you and to their caregivers no matter where you are - a menu of stimulating engagement tools.

We're eager to chronicle your loved one's life and hear their unique story. Alzheimer's and dementia care communities can be isolating places for residents, for caregivers and for family. We aim to change that one story at a time.

As Cremations Increase, Families Find Meaningful Places for the Ashes

The Washington Post reports that with almost half of families choosing cremation, there are increasing choices of what to do with the ashes.

Seeing a chance to increase both capacity and profits, cemeteries are opening sections where families can deposit ashes for a fee, by scattering them in gardens, burying them in small plots or placing them in wall niches. Some are constructing ossuaries, underground chambers where families can deposit the remains in velvet bags. (One Pennsylvania cemetery offers a separate ossuary for veterans of each military branch.)

Churches, universities and even a botanical garden in Arizona are among the institutions offering themselves as depositories for cremated remains, said Barbara Kemmis, head of the Cremation Association of North America. The trend is driven by the desire in many families for a more permanent memorial to their loved ones, she said.

Although many keep an urn on the mantel, Kemmis estimates that a third of families scatter remains out in the world, including on beloved beaches and from favorite roller coasters. Chicago’s Wrigley Field reported a minor blizzard of unauthorized ash spreading during this year’s World Series campaign by the Cubs. The Metropolitan Opera in New York recently shut down a performance after a man poured the cremains of his musical mentor in the orchestra pit.

A minor industry has arisen to deliver human remains to ever-more unreachable places, including the Holy Land, ocean reefs, the high atmosphere and space. According to U.S. Funerals Online, you can have your departed shot into the sky as a firework, made part of a coffee mug, incorporated into a tattoo or squeezed at super pressure into a fake diamond.

Going Into Shock After Hearing News of a Loved One’s Suicide | The Mighty

 "Shock is what you feel when you suddenly lose someone who lives in your home. When the shock begins to fade is when you will actually walk into your grief. "

Going Into Shock After Hearing News of a Loved One’s Suicide | The Mighty

Clergy Confidential: Father Tim's Unofficial Eulogy Guidelines

Good advice, including:

•  A Eulogy is Not a Therapy Session. Yes, all families are at least slightly dysfunctional. That's a reality of the human condition and the reason God created therapists. But if you find yourself speaking in "I Statements" throughout the talk, you may as well be giving it from a couch.
• A Eulogy is Not an Obituary. It's safe to assume that everyone who cared enough to attend the funeral has read the obituary. Please don't begin with "XX was born in Cedar Rapids, Iowa, in 1942" and then proceed to list every job she ever held, every house in which she ever lived, and every person she ever met. We know. We read the obituary. 
•  Keep it Short. The best eulogies are heartfelt and to the point And by "to the point" I mean five minutes or less. Don't go on and on as if you were channeling Bill Clinton giving that famously long and boring endorsement speech for Michael Dukakis at the 1988 Democratic National Convention. 

  Clergy Confidential: Father Tim's Unofficial Eulogy Guidelines

Help Someone Who is Grieving Take a Break

"One of my favorite grief theories, the Dual Process Model, says that a griever will oscillate between confronting their loss and avoiding the loss. Under this model, seeking respite from grief is a healthy part of coping.  This makes sense, right? Sometimes a person needs a little time to feel normal or to engage in activities that give them a boost of positive emotion.  This being the case, it may be helpful to offer or encourage distraction; with the caveat that you should never push a person to minimize, move on, or forget their loss and with the understanding that their grief could overcome them at any moment (especially in the early days) and that's okay."

From Six Practical Ways You Can Help Someone Who is Grieving:

Healing Your Grief by Helping Others | Huffington Post

"My complicated grief stretched over a period of ten years, beginning after my husband and son died within two years of each other. I tried many different methods to heal my grief but one of the things that was most helpful to me was reaching out and helping others who were in the same pain that I was experiencing.

At the peak of my struggle, I came across the Chinese parable of The Mustard Seed. Parables are stories which contain words of wisdom that can offer guidance and help us navigate challenging times in life. This particular story had a significant impact on me.

In the parable, a woman’s young son, her only child, dies suddenly from an illness. She is despondent. Carrying her son’s dead body throughout her village, she begs her neighbors to help her bring him back to life. None of them can help her, but she continues to roam the village, cradling her son and sobbing, inconsolable. The neighbors fear she is losing her mind. Finally, the village apothecary sends her to a wise man at the temple, who may be able to help the woman deal with her grief. The mother enters the temple and desperately throws herself and her son’s body at the feet of the wise man, begging for his help. She tells him he must bring her son back to her.

The wise man tells her to go back to her village and gather mustard seeds from all of her neighbors who had not been touched by death. He said he would use those mustard seeds to make a medicine that would bring her son back to life. Full of hope, the woman sets off for the village, determined to find the mustard seeds that would save her son. She went from door to door throughout the village. Her neighbors offered her mustard seeds, but she could not use them because every family had experienced some personal loss of their own. Through her conversations with her neighbors, she found that every home in her village had been touched by grief.

Through this shared experience of loss, she came to realize that death is an unavoidable part of life, something we all have to go through. The wise man had shown her that by sharing her pain and grief with others, who were experiencing their own, she not only helped her neighbors cope with their losses, but through the process, she also eventually healed her own broken heart.

I resonated strongly with this story and realized that I wanted to reach out to others who were also struggling. Hearing other’s stories that were so similar to my own, and sharing the pain helped me to let go of some of my pain. "

Healing Your Grief by Helping Others | Huffington Post:

Kerry Egan On Fresh Air: 'On Living' : Shots - Health News : NPR

A chaplain should never go in and preach to someone; that's not our role. Our role isn't to tell you what to believe. Our role is to say, "What is it you believe and how does that help you — or not help you — in this process, this process of dying, this process of letting go of the life you've loved (or maybe have not loved) and coming to some peaceful place?" 

Kerry Egan On Fresh Air: 'On Living' : Shots - Health News : NPR:

Funeral Industry Seeks Ways to Stay Relevant - WSJ

As more Americans choose cremation—often dispensing with the need for caskets, burial plots and dreary rituals—the funeral industry is reinventing itself. The goal: stay relevant and avoid a plunge in profit. 

“This industry was really built around selling a casket,” Thomas Ryan, chief executive of Service Corp. International, the largest U.S. operator of funeral homes, said in an interview. “Now it’s really about remembering the person.” 

That can mean elaborate pageantry. “We don’t call it a funeral service,” said Brad Rex, chief executive of Foundation Partners Group, which owns 50 funeral homes and nine cemeteries in 14 states. “We call it a gathering.”

Funeral Industry Seeks Ways to Stay Relevant - WSJ

Green Burial Eco-Friendly Funeral, Millennial Trends

"[M]any millennials like Scheffler (plus their baby-boomer parents) are becoming more interested in the simple but meaningful services non-traditional burials can provide. And, having seen how moving simple burials like these can be, more funeral directors are advocating for them, too. A "green" burial comes with some obvious environmental benefits, but those who have chosen natural burials find the services provide emotional closure unlike that of traditional services."

Green Burial Eco-Friendly Funeral, Millennial Trends:

Dying woman writes humble, honest obituary for herself

Sonia Elaine Todd died of cancer at age 38. She wanted to write her own obituary.

The truth, or my version of it, is this: I just tried to do the best I could. Sometimes I succeeded, most of the time I failed, but I tried. For all of my crazy comments, jokes, and complaints, I really did love people. The only thing that separates me from anyone else is the type of sin each of us participated in. I didn’t always do the right thing or say the right thing and when you come to the end of your life those are the things you really regret, the small simple things that hurt other people.

...

If you think of me, and would like to do something in honor of my memory do this:

- Volunteer at a school, church or library.

- Write a letter to someone and tell them how they have had a positive effect on your life.

- If you smoke - quit.

- If you drink and drive - stop.

- Turn off the electronics and take a kid out for ice cream and talk to them about their hopes and dreams.

- Forgive someone who doesn't deserve it.

- Stop at all lemonade-stands run by kids and brag about their product.

- Make someone smile today if it is in your power to do so.


Dying woman writes humble, honest obituary for herself:

My Last Days | Teaser | The CW

Patton Oswalt: ‘I’ll Never Be at 100 Percent Again’ - The New York Times

"Grief is an attack on life. It’s not a seducer. It’s an ambush or worse. It stands right out there and says: ‘The minute you try something, I’m waiting for you.’”"

Patton Oswalt: ‘I’ll Never Be at 100 Percent Again’ - The New York Times:

The Old Men Admiring Themselves in the Water (Yeats)

I heard the old, old men say
'Everything alters,
And one by one we drop away.'
They had hands like claws, and their knees
Were twisted like the old thorn trees
By the waters.
I heard the old, old men say
'All that's beautiful drifts away
Like the waters.'

Coffin painting – an inspiring story – Kicking the Bucket Festival

"We’d like a plain white cardboard coffin, so we can paint it,” we said, when handed a catalogue of satin lined heavy wooden caskets at the undertakers. “We need a mix of poems, songs and stories, from every tradition, yes, the Kaddish, yes ‘ransomed, healed, restored, forgiven,’ yes to Elizabeth Bishop, Bob Dylan, Shakespeare. A big yes to flowers!"

Coffin painting – an inspiring story – Kicking the Bucket Festival:

Children Don’t Always Live

After the very worst pain there is, a bereaved father dares to love again.

"I have become a father to a living child and a spirit — one child on this side of the curtain, and another whispering from beneath it. The confusion is constant, and in my moments of strength I succumb to it. I had a child die, and I chose to become a father again. There can be no greater definition of stupidity or bravery; insanity or clarity; hubris or grace. Lying on the floor, talking to my son in soothing tones and jingling bright, interesting-looking things in front of his eyes, as I did with his sister, I yearn for him to feel his sister’s touch. Then I remember with a start: We were never going to have him. We always said Greta was enough — why have another kid? I gaze in awe. He wouldn’t exist if his sister had not died. I have two children. Where is the other one? Becoming a parent is already a terrifying process. After a child’s violent death, the calculations are murkier. What does my trauma mean for this happy, uncomplicated being in my care? Will it affect the choices I make on his behalf? Am I going to give a smaller, more fearful world to him than I gave to Greta? Is he doomed to live under the shadow of what happened to his sister?"

Children Don’t Always Live - NYTimes.com:

Working with the dying taught me how to live - Daily Record

Ann Bradley spends her days caring for the dying. She loves her job and it has made her determined to live life to the full. The softly-spoken 47-year-old has worked in palliative care at the Prince and Princess of Wales Hospice in Glasgow for 14 years. She said: “It is a real privilege to work with families at the time of a loved one’s death – to help allay their fears and give them choices. “I wouldn’t want to work anywhere else.”

Working with the dying taught me how to live - Daily Record

The Radiance of Pain | Signs and Sirens

 "It is true, you see, that when hearts are broken, not everyone sews them up afterward. Some hearts stay open rather than scarring over. Some don’t just soften their ways; they soften all of our ways. They light our walks; they connect our hearths. Some–so many—are radiant in their pain."

The Radiance of Pain | Signs and Sirens:

Cookie Recipe Tombstone: Over Her Dead Body

Kathleen Turner: 'Americans really don't want to deal with death'

 "In her storied, smoky voice, Turner reflects: “Americans in particular – and I would not speak for other cultures necessarily – really don’t want to deal with death. We don’t want to even pretend it happens, unless you’re a super-Christian, I guess, of some kind, which I am not. And in fact, in a way, I think we disrespect the process, our own lives, by not honouring that part of it as well.” "

Kathleen Turner: 'Americans really don't want to deal with death' | Stage | The Guardian:

A Letter to the Doctors and Nurses Who Cared for My Wife - The New York Times

Peter DeMarco wrote to the medical team who cared for his wife, and as it turned out, everyone in her family, before she died.

"Every single one of you treated Laura with such professionalism, and kindness, and dignity as she lay unconscious. When she needed shots, you apologized that it was going to hurt a little, whether or not she could hear. When you listened to her heart and lungs through your stethoscopes, and her gown began to slip, you pulled it up to respectfully cover her. You spread a blanket, not only when her body temperature needed regulating, but also when the room was just a little cold, and you thought she’d sleep more comfortably that way. You cared so greatly for her parents, helping them climb into the room’s awkward recliner, fetching them fresh water almost by the hour, and by answering every one of their medical questions with incredible patience. My father-in-law, a doctor himself as you learned, felt he was involved in her care. I can’t tell you how important that was to him. Then, there was how you treated me. How would I have found the strength to have made it through that week without you? "


A Letter to the Doctors and Nurses Who Cared for My Wife - The New York Times

Making End-Of-Life Care Decisions Is About As Real As It Gets | Huffington Post

 "We understand that the goal of medicine today is to keep you alive. A cynic might say that as long as the patient is alive, there are billable procedures to be performed. Dead patients aren’t paying customers. I’m not that cynical, but I also don’t believe that most doctors know how to talk to families or patients about end-of-life care and how to plan for it. My husband’s doctor seemed genuinely shocked when I asked if he could just ignore the restrictive renal diet and just eat what he wants. I was serious. Why not? His kidneys have failed and aren’t coming back. How is a baked potato (on the forbidden list) going to make that any worse? So yeah, my husband and I spent hours going through his directive. We understand the importance of staying calm while we discuss these things. We talk to our kids about quality of life and the hard choices people sometimes have to make. We talk endlessly about living life to the fullest in the gaps between treatments.  Yep, we understand it all. But understanding it doesn’t make it any less hard on our hearts."

Making End-Of-Life Care Decisions Is About As Real As It Gets | Huffington Post

Study examines aggressive end-of-life care | Chicago Health

“Overuse of aggressive care at the very end of life for a cancer patient can translate to increased burden on patients and their families,” Falchook said. “If these treatments are making patients sick, and if patients continue to go to the hospital, this can reduce their ability to really spend time with their loved ones at the end of life, and to get the most time out of the life that they do have left.” And while Falchook said some treatments can be not only recommended, but beneficial to patients at the end of their lives to help ease suffering or pain, it’s important to be thoughtful about delivery. For example, researchers said radiation therapy can be used to reduce pain. “The goal shouldn’t be that there should be 0 percent of patients getting radiation in the last 30 days of life, or chemotherapy, or any of these treatments,” Falchook said. “There is some degree of what we’d call ‘appropriate care’ at the end of life. The goal is not zero, but finding that three-fourths of patients continued to receive aggressive care was surprising.”

Study examines aggressive end-of-life care | Chicago Health:

Grief Triggers Can Open Floodgates of Memory

"[M]y mother died in the fall, on a crisp October New York morning, and now it seems I will never experience the sights, smells and feelings of fall in quite the same way.  In the scrapbook of my mind memories of hayrides, Halloween, and apple picking play second string to goodbyes, red eyed family members, graveyards, sadness and longing. For me fall, with its sensory overload and bewitched air quality, is a land mine of grief triggers."

What's your grief?:

California Is The First State To Require Spiritual Care In Health Care | Huffington Post

If you get sick in California, and you are covered by the state’s Medi-Cal health insurance, you will be pleased to know that your health care just got better. California is the first state to recognize that spiritual care is a standalone discipline in health care and a trained and certified palliative care chaplain must be available for any patient who wants one. Spirituality, defined in the Clinical Practice Guidelines for Quality Palliative Care is a “fundamental aspect of compassionate, patient-and family-centered care that honors the dignity of all persons.”

California Is The First State To Require Spiritual Care In Health Care | Huffington Post:

A Phone Booth Connects Mourners to The Loved Ones They Lost

This American Life has a poignant episode about the aftermath of a tsunami and a phone booth that somehow makes it possible for mourners to feel connected.

How Patton Oswalt & His Daughter Are Coping With His Wife's Passing

Finding Purpose in Death

"You can die purposefully, in much the same way as you can live purposefully."

Spirituality may be key to 'dying well,' even in a less-religious age | Deseret News National:

A Matter of Life and Death: 60 Voices Share their Wisdom: Rosalind Bradley, Desmond Tutu

A Holocaust survivor whose mother collapsed and died only moments after they both registered as survivors, a death row inmate who has reclaimed his life through Buddhism, and a mother whose daughter was diagnosed with aggressive breast cancer two days before her thirtieth birthday, among others, offer their perspectives on death and dying in this thought-provoking volume. Contributors from all walks of life share their thoughts on carefully selected writings, images and artwork that most accurately express death to them. Describing their unique experiences, they reveal that, beyond the heartache and the mystery, death teaches us all invaluable lessons about how we live our lives.

Offering comfort, reassurance and varied insights into death, loss and its impact on life, this collection is for anyone who might be coming to terms with this inevitable destination. Royalty proceeds from the book will be donated to Ashgate Hospicecare, North Derbyshire, UK.

A Matter of Life and Death: 60 Voices Share their Wisdom: Rosalind Bradley, Desmond Tutu:

The coffin club: elderly New Zealanders building their own caskets | World news | The Guardian

"Quilting, lawn bowls and bridge it is not. Elderly people in New Zealand are enthusiastically embracing a new pastime: coffin construction. Scores of retirees across the country have formed clubs so they can get together and build their own coffins. They say the activity is cost-saving and helps to combat loneliness."

The coffin club: elderly New Zealanders building their own caskets | World news | The Guardian:

Dying: A Book of Comfort by Pat McNees

I highly recommend Pat McNees' book, Dying: A Book of Comfort, and her website. Both are exceptional resources for those who are caring for terminally ill patients or loved ones, and for all of us who must consider what it means to come to the end of our lives.  McNees has sympathetic, wise, and comforting counsel from the most practical to the most existential questions.  

Nobody teaches us how to die, or how to help someone die; nor how to grieve, or how best to help the grieving. My emphasis in collecting material for this anthology was on the emotional, not the practical, aspects of death and grieving. I looked for selections that offer meaningful insights and experiences, comforting words and stories, some guidance, much reassurance.

This is not a how-to book, but I chose selections around several basic themes: the intensity with which life is experienced by people who are dying (and those who help them die), what it is like (emotionally) to die, how to help someone die, how to say good-bye,what to expect from grief, and how to console the bereaved. There are special sections on mourning the death of a parent, the death of a child, a death by suicide, or a violent, unexpected death. There are selections about near-death experiences, about life after death, and about life and death. There are prayers from many faiths as well as selections to comfort those with no religious faith. There are also selections suitable for reading at funerals and memorial services. All of the selections are short, because people who are grieving (including people who are dying) are often unable to concentrate on anything long.

The Last Words of My English Grandmother

The Last Words of My English Grandmother
by William Carlos Williams

There were some dirty plates
and a glass of milk
beside her on a small table
near the rank, disheveled bed—

Wrinkled and nearly blind
she lay and snored
rousing with anger in her tones
to cry for food,

Gimme something to eat—
They’re starving me—
I’m all right I won’t go
to the hospital. No, no, no

Give me something to eat
Let me take you
to the hospital, I said
and after you are well

you can do as you please.
She smiled, Yes
you do what you please first
then I can do what I please—

Oh, oh, oh! she cried
as the ambulance men lifted
her to the stretcher—
Is this what you call

making me comfortable?
By now her mind was clear—
Oh you think you’re smart
you young people,

she said, but I’ll tell you
you don’t know anything.
Then we started.
On the way

we passed a long row
of elms. She looked at them
awhile out of
the ambulance window and said,

What are all those
fuzzy-looking things out there?
Trees? Well, I’m tired
of them and rolled her head away.

How Quakers Cope with Death | SevenPonds Blog

"Honoring the dead brings solace to the grieving."  The quiet beauty of Quaker rituals and beliefs.


How Quakers Cope with Death | SevenPonds Blog:

Extremis

"Extremis," on Netflix, shows the wrenching emotions that accompany end-of-life decisions as doctors, patients and families in a hospital ICU face harrowing choices.

Palliative Care and the Science of What It Feels Like to Die - The Atlantic

"Until about 100 years ago, almost all dying happened quickly. But modern medicine has radically changed how long the end of life can be stretched. Now, Americans who have access to medical care often die gradually, of lingering diseases like most terminal cancers or complications from diabetes or dementia, rather than quickly from, say, a farm accident or the flu. According to the Centers for Disease Control’s most recent figures, Americans are most likely to die of heart disease, cancer, or chronic pulmonary lung disease.

For those who do die gradually, there’s often a final, rapid slide that happens in roughly the last few days of life—a phase known as “active dying.” During this time, Hallenbeck writes in Palliative Care Perspectives, his guide to palliative care for physicians, people tend to lose their senses and desires in a certain order. “First hunger and then thirst are lost. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch.”



Whether dying is physically painful, or how painful it is, appears to vary. “There are some kinds of conditions where pain is inevitable,” Campbell says. “There are some patients that just get really, really old and just fade away, and there’s no distress.” Having a disease associated with pain doesn’t mean you’ll necessarily endure a difficult death, either. Most people dying of cancer need pain medication to keep them comfortable, Campbell notes—and the medicine usually works. “If they’re getting a good, comprehensive pain regimen, they can die peacefully,” she says."

Palliative Care and the Science of What It Feels Like to Die - The Atlantic

One man turned nursing home design on its head when he created this stunning facility.

92-year-old Norma had a strange and heartbreaking routine. Every night around 5:30 p.m., she stood up and told the staff at her Ohio nursing home that she needed to leave. When they asked why, she said she needed to go home to take care of her mother. Her mom, of course, had long since passed away. 

Behavior like Norma's is quite common for older folks suffering from Alzheimer's or other forms of dementia. Walter, another man in the same assisted living facility, demanded breakfast from the staff every night around 7:30.  

 Jean Makesh, CEO of Lantern assisted living facilities, says he meets folks with stories like these every day. It's their stories that inspired him to make some changes at Lantern. "I thought I knew a lot about elderly care. The more and more time I was spending with my clients, that's when I realized, 'Oh my god, I have no clue.'" Confusion is common in Alzheimer's patients, but Makesh knew there had to be some way to minimize these conflicts. A big believer in the idea that our environment has an enormous effect on us, he started thinking big — and way outside the box.  

"What if we design an environment that looks like outside?" he said. "What if I can have a sunrise and sunset inside the building? What if I'm able to have the moon and stars come out? What if I build a unit that takes residents back to the '30s and '40s?"  

And that was just the beginning. He also researched sound therapy. And aromatherapy. And carpet that looked like grass. No idea was off-limits. What he came up with was a truly unique memory-care facility. 

And after testing the concept in Lantern's Madison, Ohio, facility, Makesh is opening two new locations this year. Instead of rooms or units, each resident gets a "home" on a quiet little indoor street reminiscent of the neighborhoods many of them grew up in."

One man turned nursing home design on its head when he created this stunning facility.:

I do not care what you say. I have to try.

“If we feed you, we feed the cancer. Better nutrition, stronger cancer.”
“I have to try.”
“It is too late.”
“I have to try.”

A man who did nothing to care for his health while he could insists on fruitless and counterproductive treatment at the end.

I do not care what you say. I have to try.

Grief Does Not Feel Normal

When something evolves as clumsily and slowly as grief, it can be really hard to visualize progress.  On a day-to-day basis you don’t feel any different, “better”, or “normal” and this perceived lack of improvement can feel very frustrating and defeating. But could it be that you aren’t giving yourself enough credit for the strides you’ve made?

What's your grief?:

A Rabbi’s Experience By A Deathbed – The Wisdom Daily

My rabbinate has given me the sad and sacred privilege of sitting with people in their final hours of life. I call it a privilege because as much as the time is sad, it is filled also with the kind of beauty that defines the line between earth and heaven. A soul getting ready to pass is open and vulnerable and dripping with brave wisdom....I told him what he meant to me and how precious of a human being he was to the world and to me. We held hands and cried. I asked him what he was feeling and he said he was at peace. He wanted more years, but he had no regrets and he was not scared at all. He had always loved his family and friends thoroughly. He embraced every day and did everything he wanted to do. I wondered what his life’s message was and without missing a beat, he said, “Don’t ever look back, and always look forward. Be filled with hope and optimism. Life is the best.”

A Rabbi’s Experience By A Deathbed – The Wisdom Daily

The Powerful Message About A Mother's Love

I was my husband’s caregiver as he was dying of cancer. It was the best seven months of my life. - The Washington Post

"Over the course of seven months, Bill went from beating me silly on the tennis court to needing my help to go to the bathroom and bathe. It was the best seven months of my life. Maybe I don’t actually mean that. But it was certainly the time when I felt most alive. I had lived 42 years before I heard the phrases “we have a problem … multiple metastases … on the brain … probably in the lung as well.” I had become a respected professional, a responsible and, I hope, loved parent, but I had yet to discover the reason I was put on this earth. During those seven months, I came to understand that whatever else I did in my life, nothing would matter more than this. Even though I really didn’t know how this would end. For me, there were no bad days. I discovered that the petty day-in, day-out grievances of an irksome co-worker, a child with the sniffles or a flat tire pale in comparison to the beauty of spontaneous laughter, the night sky, the smells of a bakery. Some days were more difficult than others, but there were moments of joy, laughter, tenderness in every day — if I was willing to look hard enough. I found I could train myself to see more beauty than bother, to set my internal barometer to be more compassionate than callous. But I also discovered that with each day, my heart and soul grew more open to seeing this beauty than at any other time in my life."


I was my husband’s caregiver as he was dying of cancer. It was the best seven months of my life. - The Washington Post

How to Tell a Mother Her Child Is Dead - NYTimes.com

First you get your coat. I don’t care if you don’t remember where you left it, you find it. If there was a lot of blood you ask someone to go quickly to the basement to get you a new set of scrubs. You put on your coat and you go into the bathroom. You look in the mirror and you say it. You use the mother’s name and you use her child’s name. You may not adjust this part in any way. I will show you: If it were my mother you would say, “Mrs. Rosenberg. I have terrible, terrible news. Naomi died today.” You say it out loud until you can say it clearly and loudly. How loudly? Loudly enough. If it takes you fewer than five tries you are rushing it and you will not do it right. You take your time.
...
When you leave the room, do not yell at the medical student who has a question. When you get home, do not yell at your husband. If he left his socks on the floor again today, it is all right.

How to Tell a Mother Her Child Is Dead - NYTimes.com

Can Trauma Help You Grow? - The New Yorker

"Psychologists have long studied resilience—the ability to bounce back and move on. But post-traumatic growth, which has been documented in hundreds of studies, is different; it’s what happens when trauma changes and deepens life’s meaning."

Can Trauma Help You Grow? - The New Yorker'

Molly Shannon Plays a Mom with Cancer in "Other People"

Poet Mary Oliver Mourns Her Wife, Photographer Molly Malone Cook

When Cook died in 2005 at the age of eighty, Oliver looked for a light, however faint, to shine through the thickness of bereavement. She spent a year making her way through thousands of her spouse’s photographs and unprinted negatives, mostly from around the time they met, which Oliver then enveloped in her own reflections to bring to life Our World (public library) — part memoir, part deeply moving eulogy to a departed soul mate, part celebration of their love for one another through their individual creative loves. Embraced in Oliver’s poetry and prose, Cook’s photographs reveal the intimate thread that brought these two extraordinary women together — a shared sense of deep aliveness and attention to the world, a devotion to making life’s invisibles visible, and above all a profound kindness to everything that exists, within and without.

Oliver — who refers to Cook simply as M. in most of her writings — reflects in the opening essay:

"Though you have known someone for more than forty years, though you have worked with them and lived with them, you do not know everything. I do not know everything — but a few things, which I will tell. M. had will and wit and probably too much empathy for others; she was quick in speech and she did not suffer fools. When you knew her she was unconditionally kind. But also, as our friend the Bishop Tom Shaw said at her memorial service, you had to be brave to get to know her."

Mary Oliver on What Attention Really Means and Her Moving Elegy for Her Soul Mate


Our World by Molly Malone Cook and Mary Oliver

Poignant Pictures of Death Rituals

“It’s the one thing that we definitely have in common all over the world, that we’re going to die,” he says. Yet although many of the ideas behind death rituals are the same—the desire to honor a dead person’s life, or give them a safe passage to the other side—the specific practices and beliefs that go along with them vary incredibly by region and religion. These photos take you to death rituals around the world: to Ghana, where a poultry farmer is buried in a casket that looks like a chicken; to Haiti, where a dead priestess’ spirit is called out of her body; and to Madagascar, where bodies are taken out of their graves every seven years.

Poignant Pictures of Death Rituals:

Grief Doesn't Care How Long It's Been

"You will hurt but you will grow," and other thoughts about grief.


What's your grief?:

Max Ritvo, Poet Who Chronicled His Cancer Fight, Dies at 25 - The New York Times

Mr. Ritvo’s body bore three tattoos depicting birds that he had acquired after enduring each new wound or scar. “He wanted to juxtapose it,” Ms. Ritvo explained, referring to his cancer, “with something beautiful.”... In Max Ritvo’s final weeks, he remained cleareyed. In a podcast interview on Aug. 14 with the media personality Dr. Drew Pinsky, he said, his voice weak, “This is end-of-life stuff.” Over time, he said, his work had shifted “away from sort of ebullient death poetry and fighting poetry and poetry of, sort of, the bloods and the squirmies and the guts, and more toward trying to figure out what death is, and what my place in the world is.” His poetry sustained him, his family said. “He said the day he stopped writing, that would be the end of it,” his wife said in an interview. She added: “He was writing three days before he died.”

Max Ritvo, Poet Who Chronicled His Cancer Fight, Dies at 25 - The New York Times:

Helping Others Who Are Grieving Can Help Ease Your Grief, But...

"Too often people throw themselves into helping others and they forget to take care of themselves, their own needs, and the needs of those closest to them (i.e. their family)."


What's your grief?:

SPIRITUALITY IN PALLIATIVE CARE.

To be brought close to the bone through the adversity of illness, the closeness of death and the knowledge that we are not in control of the situation, is to come close to the essence of who we are, both as unique individuals and as human beings. 

Therefore the greatest gifts we can offer our family and friends are helping them to die well. Sometimes they are ready to go to God but we have a hard time letting them go. But there is a moment in which we need to give those we love the permission to return to God, from whom they came.  

This was the first 3 day spirituality training organized by KEHPCA which brought together Muslims, Christians- from different religions including Hospital chaplains, Bishops, Reverends, Catholic  priests and palliative care providers. – from  20 palliative care units and hospices.

SPIRITUALITY IN PALLIATIVE CARE.

Dying to Know: Ram Dass

I LIve My Final Days in My Soul

I see less with my eyes,
but more with my mind.
I feel less with my body
but more with my heart.
I hear less with my ears
but more with my being.
I vibrate in the presence
of others. I hear sounds
I never heard before. I
understand what I never
understood before. My soul
is no longer one with my
body. I live my final days
in my soul.


Aaron Greifer 1920-2007

Lessons from My Father - The New Yorker

"Don’t watch your father die. Then again, maybe you should. I don’t know. What do I know? I know that when they remove the tubes and machines that keep him alive they tell you that it could be hours or a day or minutes. They tell you he might gasp or choke, but he won’t feel pain, he won’t be aware. My father was surrounded by love, by our hands on him, our faces at his, our voices in his ear, hushed, trying. The sounds were brutal, uneven, as the last of his life left him. He was unnaturally gray, his whole body. His mouth was agape and no one knew what to do, so someone pulled the sheet over his face, then decided against it. I found the corner of the room and fell back against the wall. I wanted to put my fists through the wall, to shatter the dirty windows, to tell every man I saw he was a fucking loser because he was not my father and no one could be, no one comes close or ever will."


Lessons from My Father - The New Yorker:

Practical ways to help people who are dying

Just months before she died Ruth Terracini wrote a list of practical things people could do to help her and her husband Andrew. Mow our lawn, make me dinner, take me to a good movie, send me a text when you're grocery shopping and ask me if I need anything, plant something in my veggie garden …  "If I am feeling brave I will send this list to the next person that utters the dreaded words 'Let me know what I can do' and say take your pick," she wrote.

Practical ways to help people who are dying:

Revolutionizing Hospice Care With A Mindful Approach To Death

“We’re shifting from a disease-centered to a person-centered model in health care,” Dr. B.J. Miller, the Project’s executive director, told Martin. “If seen through, this shift would revolutionize how care is delivered and how illness and suffering and dying are experienced.”

Revolutionizing Hospice Care With A Mindful Approach To Death:

Death is not the enemy. More physicians need to realize that.

We in the health care field are not good at navigating death and this deficit has not gone unnoticed. Dr. Atul Gawande and many health care workers as well as medical institutions have openly reflected on the ways we fail our patients when it comes to talking about dying and guiding their decisions. This not only results in millions of health care dollars spent without any survival benefit, but it also leads to patients dying uncomfortably in hospitals instead of peacefully at home. 

This push to do everything at the end of life is understandable but not necessarily good. Doctors go along with it because we spend so many years learning how to do everything: We learn how to clinically evaluate a patient, how disease and the body works, and all the medications and procedures we can use to treat patients. We are trained to fight illness with death as our implied enemy.  

Thus, a good death is an oxymoronic, alien and uncomfortable concept. Yet, as health care providers, our oath is not to keep someone’s heart beating, lungs breathing and body warm for as long as possible — no; our oath is to relieve suffering. Separating suffering from death is hard to do but critical. Everyone will die, but that does not mean that all must suffer.  

When I think of patients dying in the hospital, I think of breathing tubes, loud beeping machines, uncomfortable beds and a round robin of strangers checking in on you throughout the day.  That is not how I want to die, nor how I want any of my loved ones to die. “Doing everything” sounds irreproachable, but it is not harmless or painless; and it is often not worth it. 

 When we delay discussions of end of life goals, we rob patients of the chance to diminish their suffering during their last days. We take away their voice and their control, and simultaneously unload the stress and burden of making these crucial decisions on their loved ones.

Death is not the enemy. More physicians need to realize that.

Our Response To Grief

"We shouldn’t comfort others with consolations and silver linings. If you’re not the immediate family you have no right to proclaim any kind of goodness in their suffering. Let God be the one to reveal good effects, and allow the immediate family to embrace the revelations in their own time. "

Our Response To Grief

Watching my grandfather die showed me all the problems with how we treat illness in America - Vox

For most of human history, death was a swift event. In 1945, most deaths occurred quickly at home. Just four decades later, in the 1980s, only 17 percent of Americans died at home, according to Atul Gawande’s 2014 book Being Mortal. 

Today, death has increasingly become a battle, a contentious process more so than an inevitable and singular event. Our new normative mortality is a "long, drawn-out death after 85," Sandra Tsing Loh observed in the Atlantic, adding that the demographic experiencing this is also the fastest-growing in the nation and is projected to more than double by 2035. As a result, the final years of life have become increasingly medicalized. 

The modern medical industry views death through a misguided lens of human progress and encourages doctors to battle death at any cost — despite the fact that this cost is unsustainable and unreimbursable. Ninety-seven percent of medical students take no course in geriatrics, and only 300 medical students trained in geriatrics in 2015, according to Gawande.

Watching my grandfather die showed me all the problems with how we treat illness in America - Vox

Loss Made Her Braver

"In 2014, my baby daughter Elouisa died in my arms and my life changed forever. Some weeks later, my husband helped me name a curious result of our loss — we were afraid of nothing. Nothing could wreak the havoc that Elouisa’s death did and so our new reality felt like an opportunity to live more bravely. To realize, despite the chaos of a shattered heart, the absence of fear as bold hope."

Another Hillary Email Leak:

A Good Death Checklist

"he three most important factors according to all of three groups were:

• Being pain-free 
• Feeling "at peace" and in a good emotional head space 
• Dying in a location where the conditions are ideal for the patient, whether that's in one's bed with family around or the hospital with doctors nearby 

The others were:

• Feeling ready to say goodbye and accepting that this really is the end instead of wishing to prolong it 
• Having a sense that there is a purpose of life and that it's been fulfilled, regardless of whether one is religious or spiritual 
• Having treatment preferences met (e.g. no heroic measures, pain-relieving palliative care) Having the people you want around you 
• Feeling that a subjective definition of "quality of life" is met (e.g. being home versus being at the hospital) 
• That a subjective definition of "dignity" is met (e.g. control and agency over oneself, being respected and not ignored) 
• Having a good relationship with the health care provider"

A 'good death' by going gentle into that good night - CNN.com:

A 'good death' by going gentle into that good night - CNN.com

"Sen. Ted Kennedy seemed to have asked himself such a question and discovered one possible answer in how he spent his final days. (Maybe because he had an opportunity tragically denied his three brothers.) The New York Times' Mark Leibovich detailed how the famed politician chose to spend his final weeks in pursuit of a "good ending," and it stuck with me as a model ever since I read it seven years ago. As death approached, Kennedy held family dinners and sing-alongs most every night. He watched his way through the James Bond film canon. He reveled in the simple joys of his dogs, reading newspapers and drinking coffee. He had a view of the sea from his bed and sailed when he could. He ate lots of ice cream. His mantra in his last days was "Every day is a gift.""

A 'good death' by going gentle into that good night - CNN.com:

Intimate Photos Tell Story Of A Beloved Grandmother's Final Days

”In the moments we shared I had the chance to witness her keep all her dignity while letting go of the pride, confronting a fast-changing body without any shyness, and without ever losing her femininity,” Squarci wrote, describing the five months she spent in Italy with Nonna before her death.

Intimate Photos Tell Story Of A Beloved Grandmother's Final Days

My aunt's struggle with assisted suicide: There was death, but not enough dignity - LA Times

"We had been forced to assist in the most bizarre fashion, jumping through seemingly random legal hoops and meeting arbitrary deadlines while my aunt suffered, and finally emptying capsules, making an elixir so vile I cried when I knew she had to drink it. This was death with dignity?"

My aunt's struggle with assisted suicide: There was death, but not enough dignity - LA Times

Quando Quando Quando - The Songaminute Man

The Songaminute Man features duets by a son and his father, a former professional singer who now has dementia but who can still remember his songs.

Terminally ill Betsy Davis holds party before ending her life | Daily Mail Online

"In early July, Davis emailed her closest friends and family to invite them to a two-day celebration, telling them: 'These circumstances are unlike any party you have attended before, requiring emotional stamina, centeredness, and openness. And one rule: No crying.'"

Terminally ill Betsy Davis holds party before ending her life | Daily Mail Online:

You Went to a Funeral and Then You Went Home

"When you go to a funeral, and are allowed to go home to life, remember that at least one person goes home to a new life that was NOT asked for, but handed to them. Give those people more than sympathy or judgement; give them an endless amount of time to grieve in their own way. For that one act of kindness and grace, they will be forever grateful for you."

You Went to a Funeral and Then You Went Home

My Own Goodbye – Your Own Good Death

"I light a candle. I sit quietly with my candle and my thoughts. I start by remembering the first time I met the person. I end by remembering our last visit. I say thank you. I blow the candle out. Once the candle goes out I breathe deeply. I am always grateful and amazed that such a simple muscle movement is what keeps me alive. Grateful and amazed that I can breathe when someone I knew, and loved, no longer does. Then [the] last step of my goodbye begins. I let my diaphragm contract, I let my lungs fill with air, and as I exhale I start to speak. I tell myself the story of my time with that person. It is a story I will use my breath to tell over and over.Because saying goodbye never means forgetting. Because their story is a part of me. Because I have the breath to tell it. Because saying goodbye, my way of saying goodbye, will go on until my last breath. Even when I am done telling the story, I will never forget how my time with them has shaped me. And as long as I am breathing they will be a part of me."

My Own Goodbye – Your Own Good Death:

When A Mother Decides To Stop Cancer Treatment And Face Death | CommonHealth

Colleen Lum decided to end treatment after 13 years fighting cancer.

"We’ve always been straightforward and honest," Lum said during an extensive interview in June. The kids "get the facts and the truth and it’s not 'Mommy has a tummy ache.' No, 'Mommy has cancer.' " Lum added: “I was a good parent before cancer, but cancer made me a better parent, because you don’t have time to postpone."

When A Mother Decides To Stop Cancer Treatment And Face Death | CommonHealth

Dying to Know Day: August 8

"'Death literacy' recognises the role that everyone has in end of life care and death care. Having knowledge helps us make informed decisions about the care, being able to act on that knowledge is empowering.  

For example, do you know: What an advance care plan is and how it is used? How to access palliative and end of life care in your area? Including death doulas or other end of life workers in your community? About alternatives to hospital death / traditional cremation/burial in your local area? What happens if you die without a will or if don’t have an enduring guardian?"

Death literacy... huh? — D2KDay

Obituary Writing in the Selfie Age - WSJ

"A Haverhill, Mass., newspaperman teaches seniors how to tell their life story for the last time; ‘don’t think that your life is any more insignificant than anyone else’s’"

Obituary Writing in the Selfie Age - WSJ:

Amazon.com: The Tao of Death: The Secret to a Rich and Meaningful Life

Amazon.com: The Tao of Death: The Secret to a Rich and Meaningful Life:

[T]hose who work with dying patients, like hospice physician Dr. Karen Wyatt, have reported a lessening of fear and increase in joy after being exposed to death on a daily basis. You can experience this same remarkable shift in your own mindset by becoming aware of death and intentionally thinking about it every day and this book can help you accomplish that.

'via Blog this'

Love, Loss, and Kimchi

Michelle Zauner writes in Glamour:

After my mom died, I was so haunted by the trauma of her illness I worried I’d never remember her as the woman she had been: stylish and headstrong, always speaking her mind. When she appeared in my dreams, she was always sick.

Then I started cooking. When I first searched for Korean recipes, I found few resources, and I wasn’t about to trust Bobby Flay’s Korean taco monstrosity or his clumsy kimchi slaw. Then, among videos of oriental chicken salads, I found the Korean YouTube personality Maangchi. There she was, peeling the skin off an Asian pear just like my mom: in one long strip, index finger steadied on the back of the knife. She cut galbi with my mom’s ambidextrous precision: positioning the chopsticks in her right hand while snipping bite-size pieces with her left. A Korean woman uses kitchen scissors the way a warrior brandishes a weapon.

...My kitchen filled with jars containing cabbage, cucumbers, and radishes in various stages of fermentation. I could hear my mom’s voice: “Never fall in love with anyone who doesn’t like kimchi; they’ll always smell it coming out of your pores.”

I’ve spent over a year cooking with Maangchi. Sometimes I pause and rewind to get the steps exactly right. Other times I’ll let my hands and taste buds take over from memory. My dishes are never exactly like my mom’s, but that’s OK—they’re still a delicious tribute. The more I learn, the closer I feel to her.

One night not long ago, I had a dream: I was watching my mother as she stuffed giant heads of Napa cabbage into earthenware jars.

She looked healthy and beautiful.

A Mother on the Unending, Unyielding Grief of Losing a Child

 I speak to bereaved parents who are often made to feel by others as if they should “be over” the death of their child. They are told to “move on.” Or, in faith circles, to “be happy he is in heaven.”

Most mental health professionals agree that child loss is probably the most difficult loss anyone has to bear. A simple Google search will turn up dozens of articles that support this understanding of a parent’s heartache and lifelong struggle to embrace the pain of losing a child. Yet most people are unaware of this fact. 

So I’m here to tell you — grieving mama, grieving dad —you are NOT crazy! You are not overreacting to one of the most awful things that can happen to someone. Out of order death is devastating! 

When asked about his son years after he had died, Gregory Peck replied, “I don’t think of him every day; I think of him every hour of every day.” 

I Am NOT Crazy!:

Nine Ways to Help Mourning Children Return to School | griefministerdotcom

Practical suggestions for helping children who are grieving by preparing them and the school, especially:

"Assure your child that they don’t have to answer every question if they feel uncomfortable doing so.  Tell her or him that they have a right to privacy when questioned by anyone at the school.

...

Set up a plan for when your child may be overwhelmed by his or her grief at school.  One suggestion is to arrange between the child and school staff for special permission for the child to leave the classroom and go to a designated safe place to receive support and comfort.  The child should understand that this permission is not an excuse to get out of everyday school work or responsibilities."


From griefminister.com

Patton Oswalt on Grief

Writer/actor/comedian Patten Oswalt mourns his wife, who died suddenly this year at age 46.

Thanks, grief.

Thanks for making depression look like the buzzing little bully it always was. Depression is the tallest kid in the 4th grade, dinging rubber bands off the back of your head and feeling safe on the playground, knowing that no teacher is coming to help you.

But grief? Grief is Jason Statham holding that 4th grade bully's head in a toilet and then fucking the teacher you've got a crush on in front of the class. Grief makes depression cower behind you and apologize for being such a dick.

If you spend 102 days completely focused on ONE thing you can achieve miracles. Make a film, write a novel, get MMA ripped, kick heroin, learn a language, travel around the world. Fall in love with someone. Get 'em to love you back.

But 102 days at the mercy of grief and loss feels like 102 years and you have shit to show for it. You will not be physically healthier. You will not feel "wiser." You will not have "closure." You will not have "perspective" or "resilience" or "a new sense of self." You WILL have solid knowledge of fear, exhaustion and a new appreciation for the randomness and horror of the universe. And you'll also realize that 102 days is nothing but a warm-up for things to come.

And...

You will have been shown new levels of humanity and grace and intelligence by your family and friends. They will show up for you, physically and emotionally, in ways which make you take careful note, and say to yourself, "Make sure to try to do that for someone else someday." Complete strangers will send you genuinely touching messages on Facebook and Twitter, or will somehow figure out your address to send you letters which you'll keep and re-read 'cause you can't believe how helpful they are. And, if you're a parent? You'll wish you were your kid's age, because the way they embrace despair and joy are at a purer level that you're going to have to reconnect with, to reach backwards through years of calcified cynicism and ironic detachment.

Lose your cool, and you're saved.

Michelle McNamara got yanked off the planet and out of life 102 days ago. She left behind an amazing unfinished book, about a horrific series of murders that everyone -- including the retired homicide detectives she worked with -- was sure she'd solve. The Golden State Killer. She gave him that name, in an article for Los Angeles Magazine. She was going to figure out the real name behind it.

She left Alice, her 7 year-old daughter. But not before putting the best parts of her into Alice, like beautiful music burned onto a CD and sent out into the void on a spaceship.

And she left me. 102 days into this.

I was face-down and frozen for weeks. It's 102 days later and I can confidently say I have reached a point where I'm crawling. Which, objectively, is an improvement. Maybe 102 days later I'll be walking.

Any spare energy I've managed to summon since April 21st I've put toward finishing Michelle's book. With a lot of help from some very amazing people. It will come out. I will let you know. It's all her. We're just taking what's there and letting it tell us how to shape it. It's amazing.

And I'm going to start telling jokes again soon. And writing. And acting in stuff and making things I like and working with friends on projects and do all the stuff I was always so privileged to get to do before the air caught fire around me and the sun died. It's all I knew how to do before I met Michelle. I don't know what else I'm supposed to do now without her.

And not because, "It's what Michelle would have wanted me to do." For me to even presume to know what Michelle would have wanted me to do is the height of arrogance on my part. That was one of the many reasons I so looked forward to growing old with her. Because she was always surprising me. Because I never knew what she'd think or what direction she'd go.

Okay, I'll start being funny again soon. What other choice do I have? Reality is in a death spiral and we seem to be living in a cackling, looming nightmare-swamp. We're all being dragged into a shadow-realm of doom by hateful lunatics who are determined to send our planet careening into oblivion.

Hey, there's that smile I was missing!

A Community That Supports Death and Dying

“Part of our lifelong practice is you talk openly – and a lot – about death,” Bill explained. “It clears the air. We’re going to die, and we have a lot of times when we visit that fact.”

In fact, one of the most widely recognized texts of the Tibetan Buddhist tradition is the Tibetan Book of the Dead.

“It says that the transition at the moment of death is just that – purely a transition in which the consciousness leaves the body,” said Shambhalian Gerry Haase.

International Shambhala President Richard Reoch published a column in the Shambhala Times in 2012 encouraging members to keep their own “death book.”

“It’s a binder with a big yellow cover with big, bold black letters that says DEATH,” said Bill. “You open it up and it’s everything you need to know for Richard. All the contacts, all the advanced directives, all the insurance, the will, all the people to call. We should all get it done – we should each have our death book.”

Shambhala

A doctor focused on dying finds lessons for better living

"Last year, 40-plus percent of Americans who died were enrolled in hospice. By some measures that’s great. But if you start looking at those numbers, fully a third of those people were in hospice for less than a week, which is really a problem for a number of reasons. So we’ve got a long ways to go....When someone asks me the question, I say palliative care is a multidisciplinary pursuit of quality of life. It doesn’t say anything about death or dying. It focuses on quality of life. And not in a positive spin, turn-that-frown-upside-down way. It’s real. Anyone who does work in hospice will tell you that, yeah, sure, it’s about death, sure, it’s about suffering, but these are the foils for happiness, for beauty, for meaning making. That’s the full equation we need to get across to people. That somehow living and dying aren’t opposed. They’re absolutely entwined with each other. And that frame shift is really novel. Palliative care is all about quality of life;a bunch of disciplines working together to support the patient and family, to eke out the best quality of life possible.

A doctor focused on dying finds lessons for better living

Hope: A documentary that tells the inspiring stories of those who are moving beyond grief to embrace life.

How My Grandmother’s Death Made Me Love Myself Again – The Wisdom Daily

"When my grandmother passed away, I didn’t lose that connection. The day I decided to really think of her, mourn my losses and cry over her legacy, that was the day I was able to incorporate her back into my life. Her spirit stayed with me and her love guided my way. Her love guided me all the way to finding love for myself."

How My Grandmother’s Death Made Me Love Myself Again – The Wisdom Daily:

My husband was dying, but his mind was still good. It was hard to let go. - The Washington Post

 "End-of-life issues prompt strong responses. All I know, now, is that until you live through it, you have no idea how you will feel. And that there are no right answers — only bad choices and worse choices."

My husband was dying, but his mind was still good. It was hard to let go. - The Washington Post:

Symposium: Death and Dying Beyond Belief

Humanists of Linn County and the Iowa Atheists and Freethinkers are pleased to announce a half-day symposium titled, "Death and Dying Beyond Belief." This is a cooperative effort between the Eastern and Central Iowa Coalitions of Reason and focuses on various death and dying topics including death with dignity and end of life preparations, hospice care from a non-theist perspective, memorial services for non-theists, personal stories of facing death without belief in a god or afterlife, and how death and grieving differs for non-theists.

Death with dignity, end of life, grief, health care, religious exemptions, are all issues that have been part of the discussion in our group, almost from the moment we organized just over a year ago. It is clear that these are issues of concern for many non-theists in Iowa and presumably, the country,” said Roxanne “Rocky” Gissler, the Coordinator for Eastern Iowa Coalition of Reason. “We were inspired to organize this symposium after reading an article in the Des Moines Register about the Death with Dignity legislation and Iowa Atheists and Freethinkers member, Jen Holman who is terminally ill. When we learned that the time allowed for the public to address the committee on this legislation was dominated by religious clergy and advocates opposed to the death with dignity legislation and that many non-theists and terminally ill individuals were not given the opportunity to speak, we knew we had to become involved.”

Gissler further explained, “We asked the Iowa Atheists and Freethinkers if they would like to co-sponsor this symposium and were delighted when that accepted. It is a true joint effort between both the Eastern Iowa and Central Iowa Coalitions of Reason. This symposium is the first of what we hope is a series of educational forums presented jointly by the Coalitions dealing with all of these issues from a non-theistic perspective. There is a lot to talk about and a lot of work to be done.”

Confirmed speakers include:

State Representative Liz Bennett, who will speak on the Death with Dignity issue within the Iowa State Legislature.

Kay Becker: President of Compassion and Choices of Iowa. Kay is a member of First Unitarian Church of Des Moines and facilitator of the Death With Dignity Action Group at that church. She will give a presentation on what Compassion and Choices does and the importance of advanced planning and documents to aid this planning. She will also give an explanation of the Iowa Death with Dignity Act (HF65 and SF2051).

Peggy Fulton: Board-certified hospice and palliative care nurse, has cared for patients and families at the end of life. Seeing families, patients and medical staff all navigate thru the end of life processes, has brought a unique perspective to Peggy's nursing practice.

Kevin Bradley of the Final Exit Network (a world federation of Right to Die societies). Kevin is a writer, speaker, stress management counselor, the Executive Director of the Libertarian Party of Minnesota, and an interfaith minister ordained in the United Church of Christ. He grew up in Southern Minnesota and started college with plans to become a minister in the Lutheran Church—Missouri Synod, but those plans changed when his father died from lung cancer when Kevin was 21. He now refers to himself as a Humanist, agnostic, atheist, or non-theist, depending on your definition of those terms. He will give a presentation on what Final Exit Network does.

Dr. Hector Avalos: an atheist and Professor of Religious Studies at Iowa State University. His talk is titled, "Life and Death as An Atheist" and he will explain some of the different approaches to death that are found among non-believers, and discuss his own experiences with a life threatening illness.

Dr. Paul Knupp: Dr. Knupp's talk is titled "When Humanists Experience Death and Dying." Many of us, as Humanists, experience death and dying issues outside traditional faith supports. What are our options as Humanists? How do we celebrate life in the midst of death without a supernatural perspective? These questions and others will find delineation in this talk. Dr. Paul Knupp was an ordained United Church of Christ minister who celebrated hundreds of funerals over a 25 year career. Now a Humanist Chaplain, Dr. Knupp continues to celebrate funerals from a secular perspective.

Alan Diehl: Board member of Humanists of Linn County and former Evangelical associate pastor. Alan will be speaking on the topic, ”Life after Death? The Difference Between What People Believe and What the Bible Actually Says."

A Hospice Nurse

Heather is not brisk or efficient, as nurses in hospitals are. She is purposely inefficient, in fact. Most of the time when she visits patients, she doesn’t have much to do: she takes vital signs, she checks that there are enough supplies and medications in the house, she asks if old symptoms have gone away or new ones developed. If she were rushing, she could do all that in about five minutes, but her visits usually last an hour or more. Sometimes there is a complicated medical situation to take care of. Sometimes she does something non-medical that needs to be done, which is the hospice way—she might sweep a floor, she might heat up dinner. But, even when there’s nothing else to do, the idea is to be around longer, to chat, to sit close by, to put her hands on the patient’s skin as she goes about her checkup. Her visit may be the high point of the day for the patient, who may not be able to get out of bed, or for whoever is taking care of the patient, who may not have left the house or seen anybody else for a day or two; either or both of them may be going a little crazy and may badly need interruption or variety of any kind, ideally someone different to talk to. So Heather moves slowly; she sits down; she delays; she lingers.
Dying can be long and bewildering, lonely and painful, frequently undignified, and consumed by pressing and unpredictable and constantly changing and multiplying needs. It’s a relief to have someone around who understands what’s going on and what may happen next. On the other hand, when dying is long it becomes ordinary, just another kind of living, but one in which your friends may be gone and your children busy, or not busy enough. In that case, it can be a good thing to see someone who is not a member of your family; who comes from the world outside your illness; who has known you long enough to be familiar but not long enough to have heard your stories already; who wants to know where your pain is but doesn’t need you to explain everything; and who is there to take your vital signs but who behaves as though she might have come over to borrow a snow shovel or a couple of eggs.<

The Threshold - The New Yorker:

Mental Illness and Cancer: How One Affects the Other | Boston Magazine

 "There are unique complexities to treating someone with severe mental illnesses (SMI), such as schizophrenia and bipolar disorder. It is even more challenging if that individual becomes diagnosed with cancer. While anyone can get derailed by being medically sick, those with SMI are particularly vulnerable. The trigger of the physical disease can destabilize their already tenuous state of mind. They may become more confused, scared, or paranoid, and lack trust in the people caring for them. "

Mental Illness and Cancer: How One Affects the Other | Boston Magazine

A Culturally Competent Caregiver at the End of Life

Tacy Silverberg-Urian, RN, BSN, CHPN and author of “The Last Mile of the Way” writes:
 "I begin to develop a trusting relationship with my patients, which makes them comfortable with disclosing even more personal desires for their EOL vision. This process takes time and commitment on the part of the practitioner, with the goal of gathering information and determining how best to honor patients’ cultures, beliefs, and values.

 For example, I would honor and respect the request of a Cuban patient’s family to avoid using the term “hospice” in front of their loved one, my patient; for an Orthodox Jewish family, I would defer to their rabbi for their Halachic pathway; and for a lesbian family that may not be biologically connected, I would invite those close friends they define as family to their family meetings.

The process of becoming a culturally competent provider involves a never-ending commitment to learning, listening, and melding care with patients’ needs and requests. It involves knowing the people you serve so that your patients are not solely responsible for your education. In Culture and Nursing Care: Pocket Guide, Lipson and Steiger (2000) describe the process of working toward cultural competency as follows:

By itself, information about a specific culture/ethnic group does not make for culturally competent care, but neither can good care be provided in its absence. Many nurses believe that one does not need to know about a patient’s culture to provide good nursing care; good clinical skills and interpersonal sensitivity are enough. However, we believe that nurses must know something about their patients’ sociocultural backgrounds. It is too easy to inadvertently insult a patient when nurses act only on what they feel is correct, which is usually based on their own values and education.  

Cultural information by itself can interfere with care if nurses use it in a cookbook manner and attempt to apply cultural facts indiscriminately to a patient of a particular ethnic group. Cultural information can lead to stereotyping patients, particularly by nurses who lack self-awareness, are ethnocentric, or who fail to recognize the variability within any cultural group. Stereotyping differs from generalizing. When stereotyping, one makes an assumption about a person based on group membership without bothering to learn whether or not the individual in question fits that assumption. In contrast generalizing begins with an assumption about a group but leads to seeking further information about whether the assumption fits the individual.  

Thus, it is important to learn whether people consider themselves typical or different from others in their cultural group, because age, education, and individual personality influence how individuals express their culture. Because stereotyping comes from jumping to conclusions based on insufficient data or experience with a cultural group, it is useful to suspend judgement as long as possible. However, the paradox is that the more one learns about a different cultural group, the more one realizes how much more there is to learn.

Working in Diverse Communities as a Hospice Educator and Nurse | Hospice Times: