Monday, June 29, 2015

Death Over Dinner - Let's Have Dinner and Talk About Death

Death Over Dinner - Let's Have Dinner and Talk About Death

Death Over Dinner is a guide for the most difficult conversations that families have.

How we want to die – represents the most important and costly conversation America isn’t having. We have gathered dozens of medical and wellness leaders to cast an unflinching eye at end of life, and we have created an uplifting interactive adventure that transforms this seemingly difficult conversation into one of deep engagement, insight and empowerment. We invite you to gather friends and family and fill a table. Click Get Started to plan a test dinner. We call it a test dinner because trying out this process in no way commits you to follow through with an actual dinner.

Health News - Dying to Talk: Australians with intellectual disability in the dark about death

Health News - Dying to Talk: Australians with intellectual disability in the dark about death
In a world-first, the Dying to Talk project is developing a research-based toolkit to support staff and caregivers to deliver individual information to adults with intellectual disability, and discuss end-of-life planning in everyday contexts.
Professor Roger Stancliffe from the University's Centre for Disability Research and Policy said access to information about death is a fundamental human right, but those with an intellectual disability have frequently been marginalised and disempowered to make decisions about end-of-life care.

When I Die by Lisa Bonchek Adams

Lisa Bonchek Adams writes movingly about how she wants to be remembered. Here are two excerpts: When I die don’t say I “fought a battle.” Or “lost a battle.” Or “succumbed.” Don’t make it sound like I didn’t try hard enough, or have the right attitude, or that I simply gave up. ... Instead, remember me and let my words live on. Tell stories of something good I did. Give my children a kind word. Let them know what they meant to me. That I would have stayed forever if I could. Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place: There is no better place to me than being here with them. They have learned about grief and they will learn more. That is part of it all.

Sunday, June 28, 2015

funeralOne Blog » Blog Archive How To Handle #FuneralSelfies (And Modern Funeral Marvels)

Social media has taken over… well, everything. Forget the days of email, or heaven forbid, snail mail. Now when you want to share something, you tweet it out to the world, put it on Facebook, post a picture on Instagram, or upload it to your Snapchat feed.
After all, as the 2015 online mantra goes, “pics or it didn’t happen.” (The idea that, if you didn’t take a photo of something, it didn’t actually occur.) So people share photos of themselves on family vacation, buying a new car, out to dinner with friends… and at grandma’s funeral? That’s right. Funeral selfies are here, among many other modern, yet baffling funeral traditions, and it looks like they’re here to stay.
Luckily, there are many ways in which these social funeral trends can actually benefit the funeral profession, while also enhancing your families’ funeral experience at the same time. Here are a few positive ways you can spin these new modern funeral trends.

Driving Home the Ashes -- Modern Loss

driving home the ashes

An excerpt from a very moving essay about grief:

i'm finally home at the cloud club after a whole week of death and afterdeath. i drove anthony's ashes in a car through the rain today. it felt comforting, getting his ashes. his clown-brother michael handed me the box and said "anthony, to go!". he's more absurd than his brother. i love him, too. it was nice to go on a drive down a rainy street with a box of someone at my side. slightly less lonely, in a spooky sort of of the things i've been combatting all the sadness with is gratitude. if you've read brene brown's book, you'll understand the psychology behind this, but it is real. gratitude eats fear, it eats shame, it eats sadness, it eats depression, it eats a lot of things.

Book: The Etiquette of Illness

The Etiquette of Illness: What to Say When You Can't Find the Words helps you know what to say when you and the person you hope to comfort know that the grief is beyond words.  It is very helpful in guiding readers to provide comfort and show compassion, with helpful advice for family members, health professionals, and for those who have to explain illness and loss to children.

Faith Hill: There You'll Be

In my dreams I'll always see you soar
above the sky
in my heart
there'll always be a place
for you for all my life
I'll keep a part of you with me
and everywhere I am there you'll be
and everywhere I am there you'll be

The Last Day of Her Life - The New York Times

The Last Day of Her Life - The New York Times

When Sandy Bem found out she had Alzheimer’s, she resolved that before the disease stole her mind, she would kill herself. The question was, when?

God Gives and God Takes, by Rabbi Allen S. Maller

God gives opportunities for us to love but not forever.
God takes opportunities away after a while.
So don't hesitate or delay or curse the darkness while remaining mired in sadness and hopelessness, because God gives; and God takes away.
Blessed be the name of the Lord.
But why bless the Lord when God takes away?
Because if the opportunities were always there, we would wait until the time was just right and never make the leap, and more of life would slip away.
So God gives and God takes; Blessed be God's name.

Friday, June 26, 2015

Poem: Funeral Blues by W.H. Auden (from "Four Weddings and a Funeral)

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.

Song of Farewell - Catholic Funeral Song

Thursday, June 25, 2015

A Woman Writes to Her Husband, Thirty Days After His Suicide

In the End, There Is Only Room for Love | Poorna Bell
It has been nearly 30 days since you held the spark of your life between your hands and pressed them shut. Since then, I have been trying to make sense of the world. In Hinduism - a religion you wholeheartedly set about getting to know even though I had long lost my faith - we have an 11-day ceremony and a 30-day ceremony. I've never understood what these were for. But perhaps they are to mark a set of realisations. By 11 days, I was aware that your death had made me a different person. Everything looked, smelled and tasted different. People that I had known for years now seemed like strangers in the midst of what I felt, and what I thought they could not possibly know about. I saw you in everything. I saw you in the sea, imagining you in the shift, turn and swirl of water. I saw you at your graveside, in the freesias you so loved. I saw you in the birds you had encyclopaedic knowledge about, in the double rainbows that lit the sky the day we said goodbye to you. You were a big, Kiwi man in real life, and yet I saw you in the most delicate of things.
From an essay by Poorna Bell, for her husband:

Wednesday, June 24, 2015

Crossings: Helping Families Care for the Dead

Who Owns the Dead? | The New Republic

The days Alison spent at home before the cremation were both “tragic and beautiful,” Knox said. “It was such a comfort.” And slowly, in the years following Alison’s death, her parents found renewed mission. Sanders, who was released from the psychiatric hospital after about two weeks, left his job in commercial litigation, and began offering his services to other families involved in airbag lawsuits. He began, also, to lobby the government to force automakers to install safer airbags and to require them to place warning labels in cars telling parents not to allow their kids to ride in the front seat.

Knox underwent a transformation as well: She founded a nonprofit called Crossings, and became one of the first people in the country dedicated to helping the families and friends of the deceased work through the emotionally taxing, logistically tricky, and sometimes unpleasant process of caring for a dead body at home. She read everything she could, reached out to others involved in the nascent cause, and began offering her services as a kind of consultant—advising both on consumer funeral rights and on a new (really, ancient) kind of grieving. Caring for the dead, Knox said, requires a “fierce determination” and a willingness to follow your loved one to a place where few modern Americans dare to go.

Experts on Aging, Dying as They Lived - The New York Times

Experts on Aging, Dying as They Lived - The New York Times
To the small extent that we have any choice in this uncertain life, it is wise to face your own death. In a world where so many of our fellow human beings live with threats of terror and destruction, if you are lucky enough to imagine you might have any measure of control over how you die, that is a privilege that should not go to waste. Our deaths are the last message we leave for those we love. How my parents died — in comfort — was the way they cared for me after they were gone. I was not ready to lose them in my 20s, but they had prepared and so I was protected. Their legacy to me was not a given. The illnesses that took them were outcomes that our past selves would have labeled catastrophic, worst-case scenarios. And yet for me these worst-case scenarios, though painful memories, are dwarfed by a much larger story: how my parents lived, how they died and how gracefully they did them both.

Sheila Kitzinger's Daughter Writes About Her Mother's "Good Death"

Sheila opted for a simple, private burial – much to the surprise of some friends and colleagues who had expected an opulent public funeral extravaganza. Sheila wanted her body buried “without fuss”. So we carried her coffin from the house, to a tune from our time in Jamaica in the 1960s, placed it in the back of a car, and drove to a woodland burial ground. We lowered the coffin into the ground, scattered it with sprigs of rosemary and camellia blossom from our lovely garden and read some of Sheila’s own poetry: “After the soaring, a peace like swans settling on the lake After the tumult and the roaring winds, Silence.”

Eli Eli (My God / a Walk to Caesarea) | Hannah Szenes (guitar: dublinkid) - YouTube

Walk to Caesarea

My Lord, My Lord
May it never end
The sand and sea,
Murmur of the water,
Shine of the sky,
Prayer of Man.
The sand and sea,
Murmur of the water,
Shine of the sky,
Prayer of Man.

Hannah Szenes

Prayer: A Jewish Blessing for Those Who Mourn

Those who are worn out and crushed by this mourning, let your hearts consider this:
this is the path that has existed from the time of creation and will exist forever.
Many have drunk from it and many will yet drink.
As was the first meal, so shall be the last.
May the master of comfort comfort you.
Blessed are those who comforts the mourners.

Mourning a Brother: The New Normal

In The New Normal, Stephanie Wittels Wachs writes about the loss of her brother, the raw, searing pain and the sense of dislocation.
Most of the time, I just feel like some sort of alien who is going through the motions of being human but is from another galaxy and having a hard time fitting into this world. And, no one here can win. I feel angry when people don’t acknowledge the situation, and I feel angry when they inevitably say the wrong thing. “How are you?” or “have a nice day” tend to feel like acts of violence. The public response to such a personal tragedy is simultaneously comforting and horrifying. That first week, you are a trending topic. My entire Facebook feed is you — podcasts, photos, videos, quotes, articles, tributes, blog posts, tweets. Strangers send beautiful messages and flowers. Someone off the Internet even painted a portrait of you that’s now hanging in our house. But then Leonard Nimoy dies and your position of “tragic dead celebrity of the week” is usurped. By the end of Week 2, neither of you are news anymore and everyone goes back to bitching about traffic, making jokes, and sharing baby milestones.

Tuesday, June 23, 2015

Living Tree by Robert Morgan from The Writer's Almanac

Living Tree
by Robert Morgan

It’s said they planted trees by graves
to soak up spirits of the dead
through roots into the growing wood.
The favorite in the burial yards
I knew was common juniper.
One could do worse than pass into
such a species. I like to think
that when I’m gone the chemicals
and yes the spirit that was me
might be searched out by subtle roots
and raised with sap through capillaries
into an upright, fragrant trunk,
and aromatic twigs and bark,
through needles bright as hoarfrost to
the sunlight for a century
or more, in wood repelling rot
and standing tall with monuments
and statues there on the far hill,
erect as truth, a testimony,
in ground that’s dignified by loss,
around a melancholy tree
that’s pointing toward infinity.

"Living Tree" by Robert Morgan from Dark Energy. © Penguin, 2014.

From The Writer's Alamanac

Sunday, June 21, 2015

A humane way to end life - The Washington Post

The issue stirs strong emotions. Some opponents, including the Catholic Church, cite religious or moral grounds, seeing any form of assisted dying as anathema to teachings that life is never to be taken. Some physicians believe the practice violates their oath only to heal, and some disability rights activists fear that they will be vulnerable to abuses. Others warn of a slippery slope to euthanasia.
Oregon’s 18 years of experience do not confirm any of these fears. Enacted in 1997, Oregon’s Death with Dignity Act allows terminally ill adults who are residents of the state to obtain and use prescriptions from their physicians for self-administered lethal doses. Stringent protections include a life expectancy of less than six months, a finding of mental capability, a concurring opinion from a second doctor, mandatory discussion of hospice and other options, waiting periods and more.
Oregonians have made sparing use of the law, with 859 deaths as of Feb. 2 . The state collects data on each case, and there have been no reports of coerced or wrongly qualified assisted deaths. The typical patient is about 71, suffering from terminal cancer, well-educated, with health insurance and enrolled in hospice. About one-third of prescriptions were never used, suggesting some terminally ill people are comforted by knowing they have an alternative to extensive suffering should they need it.

The 20 Best Alzheimer's Blogs of 2014

The 20 Best Alzheimer's Blogs of 2014 from Healthline is an excellent resource for families and caregivers.

People Power: A Better World for People with Alzheimer's

People Power: A Better World for People with Alzheimer's Parade has an excellent round-up of some innovative programs for people with dementia and their families and caregivers, just a few of the "thousand little stories." Knoxville, Tennessee has a city-wide program to help everyone understand the best way to help people with memory issues and a hospital in Florida now puts a purple sticker on the wristbands of patients with dementia so that everyone who sees them is prepared to deal with their deficits and special needs. As shown in the film "Alive Inside," some programs help by providing music to dementia patients. Dan Cohen, who made the film, says, “If pharmacists invented a pill that generated these results, every doctor would prescribe it and every family would want it." An app called GreyMatters lets families create personalized iPads with images and audio that can prompt or reassure those who are forgetful. And websites like Alzheimer's Front Row are virtual communities for sharing stories, resources, and best practices.

One Family's Experience of Early Dementia

How to know when it is time for long term care

Portland Press Herald Contributors | How to know when it is time for long term care.   Excerpt:

In many situations the need for care will creep up on a family. Oftentimes, family members are acting as caregivers without realizing it. As the need for care increases, it can either seem like a normal part of aging or people are just not willing to admit that the ability to live independently is no longer possible - or safe. But there are warning signs you should be looking for that will help you recognize when the time for professional long term care has arrived:
Physical Deterioration: Look for signs such as significant weight loss, balance issues and falling, loss of strength and stamina, and other losses of “Activities of Daily Living” such as ability to shower or toilet, dress, or eat independently.
Mental Deterioration: Do not blow off loss of memory or confusing names, dates and locations as just a “senior moment.” Cognitive deterioration is an important warning sign that you should be on the lookout for dementia and Alzheimer’s. These conditions can worsen quickly and can lead to many physical breakdowns and safety issues.
Lifestyle Deterioration: Is the home not being kept as neatly as in the past? Are things oddly out of place (a house plant in the fridge, pots and pans in the bathtub), or do you see signs of physical damage (the car crashing into a fence or the wall of the garage, burn marks on the kitchen wall from a flash fire)? long term care is both a matter healthcare and safety.

Caretaking; Sandra Tsing Loh on When Love and Resentment Collide

Writer Sandra Tsing Loh spoke on NPR about the stress of caring for her aging father, which she also wrote about in the Atlantic.
My parents took cared of me from zero to 18, and I lived with them. I lived under their roof. I did everything they told me to, and then I was out. We may take care of our elderly parents for 20 or 30 years because the longevity is so much longer now. They don't do what we ask them to. They're not under our house. They're not under our holiday schedule, so it's actually in this book that I talked about, Jane Gross' "A Bittersweet Season," in The Atlantic. She talks about the mommy track versus the daughter track. And although parents, we complain about our children and how tough it is to find day care and good schools, et cetera, kind of the daughter track is far more open ended and has no rewards, you know, at the end except for death. And it's longer and it's unpredictable and it's a totally different track people are experiencing now.

A Will for the Woods: Interview with Amy Browne on Her Documentary about Eco-Burial

Clark Wang was a psychiatrist, a musician, and a man in a deep and loving relationship and he was dying of lymphoma. He made the time he had left profoundly meaningful in the way he chose to say goodbye by using his death and plans for an eco-burial to save a wooded area scheduled to be cut down for a cemetery. Wang was committed to having his last act give back to the earth as purely and harmoniously as possible.
Part of that thoughtful, generous resolve included his participation in the moving and inspiring documentary, "A Will for the Woods," already the audience award winner at four different film festivals. The film is about a life of purpose and a death with meaning.

There is a contrast between the health professionals on screen who use a lot of euphemisms like "outcome" and the directness and honesty of Wang, his friends, and Dyanne Matzkevich, the sympathetic cemetery manager who becomes a close friend as well.
While a doctor speaks vaguely of clinical trials as a way to convey that all possible treatments have failed, a friend builds a coffin to Wang's specifications, from reclaimed wood, and, as the film opens, we see Wang not just try it on for size but literally dance on it.
Producer/co-director Amy Browne said in an interview that
People are eager to have these conversations. That's why I think people are connecting with the film. It's because they connect so much with the idea and hopefully also the way that it's presented. Things need to change and it feels like the funeral industry is on the verge of an evolution and people are going to be demanding this option as the baby boomers are having funerals for their parents and very soon for themselves. They've always been the revolutionary generation and I think this option speaks more to their mindset, moving away from the sort of industrialized processes that have been going on for the last few decades.
Co-director/editor Tony Hale added, "It allows us to talk about death in a way that we haven't talked about in a long time because there is no vocabulary for it any more. This is about reclaiming rituals that may have been lost in the last hundred or two hundred years."
Browne says the film has been well received within the funeral industry.
We played at the ICCFA convention, which is the International Cemetery Cremation and Funeral Association. That was a big deal. A lot of people were really touched by the story and peripherally we influenced some directors in funeral homes to provide this option....Conventional folks would just have their mindset in one traditional way where the only way to have a funeral that's respectful is to have this elaborate casket and flowers and a manicured lawn cemetery setting. But those are also the types of people who turned their back on cremation twenty years ago and kind of lost out on that as the cremation rate continued to rise. As the funeral director says in the film, the main issue as to why some haven't embraced it within the industry is that they don't want to appear like they've been doing it wrong or that there is something the matter with these traditions.
It is especially touching to see the filmmakers become a part of the story through their intimate involvement as Wang and his partner, Jane Ezzard were managing his final illness and preparing for his death and burial. They even appear briefly in the film. After Wang's death, Ezzard begins to sob and we can hear one of the filmmakers comforting her. Browne said that rather than try to be journalistically objective, it was
more of a participatory documentary. During the funeral scene sometimes while we are filming, we would be the only people there at the end of the evening. We were staying at Jane's house and we put the camera on a tripod sometimes to film ourselves in the process of taking care of Clark's body because we were the ones doing it and we wanted to record everything. It felt very natural to step out from behind the camera and be involved. I can't imagine doing it any other way. We wanted to lift the veil on the relationship between filmmaker and subject.

Saturday, June 20, 2015

Mona Simpson's Eulogy for her Brother, Steve Jobs

Novelist Mona Simpson did not meet her brother, Apple founder Steve Jobs, until they were both in their 20's, but they became very close. This is from her beautiful eulogy.
What I learned from my brother’s death was that character is essential: What he was, was how he died. Tuesday morning, he called me to ask me to hurry up to Palo Alto. His tone was affectionate, dear, loving, but like someone whose luggage was already strapped onto the vehicle, who was already on the beginning of his journey, even as he was sorry, truly deeply sorry, to be leaving us. He started his farewell and I stopped him. I said, “Wait. I’m coming. I’m in a taxi to the airport. I’ll be there.” “I’m telling you now because I’m afraid you won’t make it on time, honey.” When I arrived, he and his Laurene were joking together like partners who’d lived and worked together every day of their lives. He looked into his children’s eyes as if he couldn’t unlock his gaze. Until about 2 in the afternoon, his wife could rouse him, to talk to his friends from Apple. Then, after awhile, it was clear that he would no longer wake to us. His breathing changed. It became severe, deliberate, purposeful. I could feel him counting his steps again, pushing farther than before. This is what I learned: he was working at this, too. Death didn’t happen to Steve, he achieved it. He told me, when he was saying goodbye and telling me he was sorry, so sorry we wouldn’t be able to be old together as we’d always planned, that he was going to a better place. Dr. Fischer gave him a 50/50 chance of making it through the night. He made it through the night, Laurene next to him on the bed sometimes jerked up when there was a longer pause between his breaths. She and I looked at each other, then he would heave a deep breath and begin again. This had to be done. Even now, he had a stern, still handsome profile, the profile of an absolutist, a romantic. His breath indicated an arduous journey, some steep path, altitude. He seemed to be climbing. But with that will, that work ethic, that strength, there was also sweet Steve’s capacity for wonderment, the artist’s belief in the ideal, the still more beautiful later. Steve’s final words, hours earlier, were monosyllables, repeated three times. Before embarking, he’d looked at his sister Patty, then for a long time at his children, then at his life’s partner, Laurene, and then over their shoulders past them. Steve’s final words were: OH WOW. OH WOW. OH WOW.

Her Mother's Last Wish Was to Have Her Ashes Shot Into the Sky

In the Washington Post Magazine, Janna Bialek writes about her mother's death.

Finally, it was time to say goodbye. Each of the four children took a small blowtorch, lit for us by our spouses. Miraculously and without incident, we walked up to the four fuses of the rockets whose forward canisters held her and lit the ends, then walked away. Successive whooshes came from the four rockets that carried her ashes into the Iowa sky. A long white tail of pinpoint lights rose and detonated the explosives, but the canisters holding her didn’t explode until the third and fourth stages, popping around with little white screams. The smoky, carbon-smelling clouds rained down motes over the grass, the driveway, on my shoulders and in my hair. We hugged tight and felt the shift.

Friday, June 19, 2015

Poem: Let Evening Come by Jane Kenyon

Let the light of late afternoon
shine through chinks in the barn, moving
up the bales as the sun moves down.

Let the cricket take up chafing
as a woman takes up her needles
and her yarn. Let evening come.

Let dew collect on the hoe abandoned
in long grass. Let the stars appear
and the moon disclose her silver horn.

Let the fox go back to its sandy den.
Let the wind die down. Let the shed
go black inside. Let evening come.

To the bottle in the ditch, to the scoop
in the oats, to air in the lung
let evening come.

Let it come, as it will, and don’t
be afraid. God does not leave us
comfortless, so let evening come.

Thursday, June 18, 2015

This is the Place for Your Stories of Grief, Loss, and End of Life

Welcome.  You have come to the right place, and I am glad you are here.

This is a safe place to share stories of love and loss, devastating grief, exhausting care-giving, memorials, advanced directives.  We want to hear about about what you wish we had known or done differently, what you wish those around you had known or done differently, and what went right.

Every life is different and every death is different, but one thing we know, it is not like the movies.  The people we love do not just sigh sweetly and close their eyes.  Dying can be ugly and painful.  Helping those who are dying can be a moving experience that brings families closer, but it can also be a time of stress so severe that there is no recovery, so that just when we need to strengthen our connections with those who are still here, we find we do not know how.

This is a place for you to share your stories in whatever way will make you feel better.  No judgment, only a caring community to let you know we want to listen and we want to know.

There are those around you who will tell you that it is better if you stop talking about death.  They are wrong.  We will never tell you to move on or find closure.  We know the only thing that can help is to tell your story.  It keeps us close to the ones who have died and it creates and strengthens our bonds with each other.

We would be honored if you would share your stories with us here.