Saturday, August 29, 2015

Raging as My Sister's Light Dims - Sara Lukinson

 "So, when people say, cherish every moment with your sister, she is still very much alive, it’s a lot of crap.

You watch her smile and stumble through the hallways, be patient through long rounds of needle jabbing, machine poking and fear-inducing lab reports. What kind of day is that?

When it’s all over, I know, from unwilling experience, I will cherish the hours of just being in the same room with her. The boredom and the terror will have evaporated and the sweet effortlessness of being together will remain.

But being in it is a slow dance in hell. You are helpless, you are afraid, you are restless and impatient. I want to be outside the circle of fire that rings our campsite, to run away and have it be back to normal."

Raging as My Sister's Light Dims - The New York Times

The Last Chapter - End of Life Decisions

Friday, August 28, 2015

George Will on Slow Medicine and Giving EOL Patients Dignity and Autonomy

George Will writes:
Almost 30 percent of Medicare expenditures are for patients in the last six months of life and about 16 percent of patients die in, or soon after leaving, intensive care units. Financial reasons should not be decisive in setting end-of-life policy, but Cederquist notes that reducing “expensive and inappropriate care” — costly and agonizing resistance to imminent death — “is the lowest-tech thing we can do in medicine.” Hence the importance of “slow medicine geriatrics,” avoiding a “rush to those interventions that build on each other” and thereby enmesh doctors and patients in ethical conundrums. The American Medical Association remains opposed to physician assistance in dying; the California Medical Association has moved from opposition to neutrality. Litigation has been unsuccessful in seeking judicial affirmation of a right that California’s legislature should establish. Legislation to do this has been authored by Assemblywoman Susan Eggman, chair of the Democratic caucus. ... Jennifer Glass, a Californian who died Aug. 11, drew one. She said to her state legislators, “I’m doing everything I can to extend my life. No one should have the right to prolong my death.” The Economist reports that in the 17 years under Oregon’s pioneering 1997 law, just 1,327 people have received prescriptions for lethal medications — about 74 a year — and one-third of those did not use them. Possessing the option was sufficient reassurance. There is nobility in suffering bravely borne, but also in affirming at the end the distinctive human dignity of autonomous choice. Brittany Maynard, who chose to be with loved ones when she self-administered her lethal medications, was asleep in five minutes and soon dead.
Continuing bonds are a common, healthy, and enduring element in the resolution of grief. – Dennis Klass et al. 1996

The death of our children is one of the most disempowering events we will ever experience. In the aftermath, we can choose to empower ourselves by consciously engaging in activities that deepen the bond with our children.
Here are some suggestions: 
Find an item that reminds you of your child. If it is a blanket, wrap yourself in it, or cologne or perfume, spray yourself with it. Whatever item you choose, find a quiet space and time and invite your child to spend some time with you. 
Reflect on the great times that you shared and wish to share in your new relationship. Light a candle or burn some incense.  
Look at a photo album, or photos that you have on your computer. They can be pictures of friends, family, or pets. Share your specific memories of those photos with your children quietly or out loud, whatever works for you. 
Take a walk in nature or a leisurely drive. Bring your child’s picture or your unique linking object with you. Allow the positive memories to flow.  
Choose an activity that reflects the relationship that you shared with your child when he/she was alive. Be aware of what you experienced. Did you have a sense of peace, a chill or chills or discover other evidence of your child’s presence?
From David Roberts on Open to Hope

What Not to Say in Time of Loss -- And What to Say Instead

In the new film "A Walk in the Woods," the character played by Robert Redford attends a funeral and, at a loss for words, he stumbles and tells the widow standing by her husband's casket that "It's a pleasure." His wife scurries him along. We've all been there. What do you say when words feel so inadequate? Journeys Through Grief has a good list of platitudes to avoid ("It was God's will," "I know how you feel," "It's time to move on"). Instead, say: "Can I bring over dinner on Thursday?" "Is there anything I can get you from the store?" "Can I watch the children/grandchildren while you take a nap?" "I will miss him." "She taught me so much." And most important, just sit quietly with the mourners and let them speak or not speak.

Sally Dalzel Writes to Her Late Husband

Sally Dalzel on Journeys Through Grief
I missed having him to talk to. I did not know what to do with the thoughts and feelings which had nowhere to go, and so, I started to write to him – a series of letters – letters which enabled me to articulate the feelings only he would have understood. I knew as I was writing them that it was a fantasy, a temporary removal from reality, on the one hand an acknowledgement he was no longer there, and on the other being able to share with his memory all that he had meant to me. These intensely personal letters, written without censorship were a way of slowly letting him go, although at the time I started to write them, it felt more like a way of holding on to him. Written over a period of nine months they chronicle my journey from loss to unwilling acceptance.
Because You Were There

Atul Gawande on America’s urgent need to rethink end-of-life care | Dallas Morning News

Atul Gawande, author of the superb Being Mortal: Medicine and What Matters in the End:

"I learned about a lot of things in medical school; dying was not one of them. I went into surgery because I wanted to be a hero. I wanted to save the day. I learned how to fix things — but not how to manage the problems that you could not fix. I didn’t expect that to be as much of my career as it is."


"There was a core set of things that people put out to me. Number one, people have priorities in their lives besides just living longer and they matter a great deal. Number two is that the most reliable way to learn what those priorities are is to ask and we don’t ask. The result, that’s number three, is that when you don’t ask, the care and treatment that people get is often increasingly out of alignment with their priorities and what really matters most to them."

Q&A: Atul Gawande on America’s urgent need to rethink end-of-life care | Dallas Morning News

Wednesday, August 26, 2015

What Japan Can Teach Us About Long-Term Care

 "Beneath the political radar, experts at places like the Urban Institute, the Bipartisan Policy Center and the Long-Term Care Financing Collaborative have been working on some ideas. They’re drawn from the ranks of health care providers, the insurance industry, the government and elder care organizations. And they’re well aware of what has worked in Japan and other countries.

They’re asking questions such as:

Could Medicaid be redesigned to support a greater number of older, disabled adults?
What about more public/private partnerships? Could the federal government backstop the private long-term care industry and reduce its risks enough to encourage firms to get back into the market and offer consumers affordable policies?
What would it take to integrate Medicare into long-term care?
Could local regulations be changed to break down barriers to new forms of community — such as zoning laws that limit the number of unrelated people who may share a home?
You can find a good summary of these and other ideas at the website of the Long-Term Care Financing Collaborative."

What Japan Can Teach Us About Long-Term Care

What Is Dementia? - Alzheimer's Society Dementia Brain Video

The I.C.U. Is Not a Pause Button - The New York Times

ICU Nurse Kristen McConnell: "I’ve often spoken with patients’ family members who seem to feel that an I.C.U. is a time-free holding zone; that intensive care functions as a pause button. Those conversations usually take place on the phone. It’s harder to believe in this pause button when you witness the constant poking and suctioning, the invasive examining and monitoring, the parade of medications and the contraptions necessary to deliver them, the lights and alarms, the coughing and grimacing and shuddering — or, in the less responsive, the bloating and stiffening or slackening and eventually the eerie dehumanization of both the patient and the caregiver. Thinking that intensive care can pause the march of time is a misunderstanding or a willful fantasy. There are always bargains to be made and discomforts to be faced in a place that is staving off death.

Time goes by quickly caring for patients like that young, scarily ill man. It goes by too quickly for nurses and doctors to eat or sit down or even go to the bathroom. It went by too quickly for the E.R. staff to clean the vomit off his face. Each minute matters, and it feels like a focused race. Caring for patients like the old man doesn’t feel like racing, it feels like waiting. In cases like his, time goes by slowly. But it definitely does not stop. These days are lived. For patients in the hospital surrounded by workers just as for patients at home or in hospice surrounded by people they love, these days at the end count.

Americans are increasingly aware that a good death rarely happens on its own; it needs to be negotiated and orchestrated. More people complete advance directives so their families are not left to make end-of-life decisions for them. But every day thousands of the patients toughing it out in intensive care are in fact in a purgatory maintained by family members who are either too intimidated by the complex medical situation to get involved (care providers who communicate poorly share the blame for this), or who don’t realize that this time is crucial. The cascade of responsibilities that occur when someone is dying has begun, even when the nurse on the telephone tells you that the patient is stable.

Families should realize that this time is the end of life, and they should pay attention to its quality just as they would if the patient were dying at home. That’s because although we can usually hold off death, we cannot pause time, and an extended stay in the I.C.U. is an ugly way to end a life. Unless the medical record contains an order limiting the measures that can be taken, originating from the patient, his next of kin or his designated proxy, interventions to keep him alive will continue indefinitely, regardless of the anticipated outcome in quality of life.

When a family member is in the I.C.U., it’s not enough to call. You need to drop what you’re doing and be at that person’s side, figuring out what is best for them. Doctors, nurses and technicians care about patients, but sometimes we cannot express our care by doing what we think is best for them. In the I.C.U., that is not our job. Our job is to preserve life. Often, when working with patients who have a quality of life it is impossible to imagine anyone wanting, we express our care by saying, “I’m sorry.”"

The I.C.U. Is Not a Pause Button - The New York Times

Tuesday, August 25, 2015

Sarah McBride on losing her husband at age 24:
There are many lessons I take from his passing, but the biggest is that though we may feel invincible, we never know how much time we have left. Life is too short for outdated dogmas to impede our own pursuit of happiness. Despite growing up in a progressive family and with open-minded friends, the expectation from the outside world that we must live, love, and identify based on one fact at birth, kept Andrew inside of himself for too long.
In his early twenties he finally had the courage to be happy and complete. Getting cancer was not a choice. There was nothing that he could have done to avoid his ending. But our society's prejudice that kept him from being complete for most of his life is a choice. For Andrew, and for all the people who simply want to make the most of their lives, let us make the choice to stop the hate and to let love, light, and authenticity flourish.
And yet despite this tragic end, it's clear that Andy lived with more purpose and realness in 28 years than most find in 60 or 80 years. He loved and was loved. He befriended and mentored without regard for status or interest in gain. He gave others courage through the bravery he demonstrated; not just throughout his struggle with cancer over the last year, but also through the authenticity with which he lived his own life every day. Through his work, he helped open up health care to hundreds of thousands of LGBT Americans and spearheaded the national effort to ensure that transgender people can access the care they desperately need, but are too often denied.
Few, if any, have ever taught me as much as Andy did. He taught me about life, perseverance, compassion, optimism, fidelity, and passion. He was one of the most impressive people I've ever met, yet one of the humblest (it's amazing he could tolerate me). Even in his final weeks, he cried less about his own luck or plight, but about the things he would no longer be able to do for others. That was Andy.
So thank you for coming into my life, my bean. So many medical professionals said, given your state, you shouldn't have made it to the wedding. But you did. I don't know if you held on for me or for you. But, in the end, you gave me the best gift anyone could ever ask for. Thank you for sending me that first Facebook message in August of 2012 and thank you for marrying me one year ago. But most of all, thank you for being you.

Sunday, August 23, 2015

Doctors Fail to Address Patients' Spiritual Needs - The New York Times

"Seventy percent of dying patients want their doctor to ask them about their religious beliefs.

Religious beliefs also often affect patients’ wishes when it comes to choosing aggressive end-of-life treatment or palliative care.

However, only half of those patients who want to discuss spiritual or religious concerns with someone in the hospital end up doing so. Those who discuss these issues – whether they initially wanted to do so or not – are, however, more likely to rate their overall hospital care as excellent. Among advanced cancer patients, 88 percent feel religion is at least somewhat important, and 72 percent feel the medical system supported their spiritual needs only minimally or not at all.

Consequently, in 2001, The Joint Commission, which accredits healthcare organizations, decreed that health care providers “receive training on the value of spiritual assessment.” Partly as a result, the number of medical schools with some education on spirituality and health has increased from 13 percent in 1997, to around 90 percent in 2014."

Doctors Fail to Address Patients' Spiritual Needs - The New York Times

Writing Your Grief: the 30 day e-course - Refuge In Grief

"We all need places where we can speak what’s true, without fear of correction, judgement, or false comfort. Acknowledgment of the truth is a relief – and it heals something in us.

The Writing Your Grief 30 day e-course allows you to enter your grief as a story-teller as well as a person in pain. As you enter into conversation with your own heart, you'll find new stories inside your grief. You'll find a community of people who listen without flinching, without offering advice, without correcting you out of your grief."

Writing Your Grief: the 30 day e-course - Refuge In Grief:

The Personal Paradigm Shift of the Past Perfect

Mark Liebenow:  "I am going to survive grief not because I am balanced, or because I have hidden strengths that grief has brought out, but because I’m stubborn. If death is going to hit me, them I’m going to hit death back, and hard.

Grief broke the dam on my emotional river that held back and doled out my caring of others through society’s irrigation pipes. Now that the dam is gone, my love flows free to everyone who has a need, even though I don’t always know what to do, I’m awkward, and I often feel overwhelmed. But I don’t want to stuff my emotions back inside the coffee can. That way of living is predictable and boring.

This caring for others that I’m talking about (you can also call it love, compassion, or kindness), isn’t a matter of give and take. I don’t scratch your back so that you will scratch mine. This compassion is not an emotion that ebbs and flows. This love is intentional. If I show you kindness and you happen to return kindness to me, all the better. But I help you simply because you have a need. My grief has shown me how much we need the help of others, including strangers who show up at the door.

Don’t get me wrong about trees. I adore them — oaks and pines, hickories and maples — just not as similes. Trees are glorious creatures standing with an architecture and presence all their own. We don’t need to reduce them into abstract concepts. But if we want to go the simile route, let me toss in this fact: There are massive trees that have shallow root systems, like my beloved giant sequoias in Yosemite. They will blow over in strong winds unless they connect their root systems with nearby trees. Then they support each other. You know, like in a community.

Do I love others as deeply as I grieve? I hope at least this much."

The Personal Paradigm Shift of the Past Perfect

How to Age Gracefully - CBC Radio WireTap

What the Psychic Showed Me - The New York Times

 "I realized that in acknowledging our grief so openly — sharing that vulnerability and bearing witness to the details of the lives of the people we all missed so dearly — there was healing. There was a kind of communion that came from stepping out of the isolation of our individual griefs and into a realization that loss is a universal experience.

I still remained unconvinced of the claims of psychics, but my interest was piqued by the way different views of the afterlife can affect the process of grieving."


"Grief can be a long, arduous process. Plenty of research suggests that the greatest factor in alleviating the pain of grief is simply the passage of time. Again and again, though, I see a healing shift occur in people who feel that they have found a way to remain close to someone they’ve lost. This seems to allow people to accept their loss better, and find consolation in the idea that they are still connected.

How a visit to a psychic medium measures up against more conventional methods of alleviating grief — like anti-depressants, psychotherapy or empty-chair Gestalt technique — no longer concerns me. I do not recommend that all of my clients attend a reading, but I believe that for those who feel open to the idea, there can be value in the experience."

What the Psychic Showed Me - The New York Times

Your Brain, Your Disease, Your Self - The New York Times

There are many kinds of memory loss.  The one that is most profoundly disruptive to the family's ability to recognize the person they love is the dementia that destabilizes moral understanding.

As monstrous as neurodegenerative disease is, its powers of identity theft have been greatly exaggerated. Remarkably, a person can undergo significant cognitive change and still come across as fundamentally the same person.

What makes us recognizable to others resides almost entirely within a relatively narrow band of cognitive functioning. It is only when our grip on the moral universe loosens that our identity slips away with it.

Your Brain, Your Disease, Your Self - The New York Times

Saturday, August 22, 2015

Still Mine (Official Trailer)

How would you like to die? A conversation with Stanford's VJ Periyakoil | News Center | Stanford Medicine

 "How would you like to die? Asking patients that question is not easy for most doctors. In fact, most of us – doctors and patients alike – prefer to avoid the topic completely. VJ Periyakoil, MD, director of Stanford’s Palliative Care Education and Training, says this needs to change. To get these conversations started far and wide, Dr. Periyakoil launched the Stanford Letter Project – a campaign to empower all adults to take the initiative to talk to their doctor about what matters most to them at life’s end. In this podcast, she discusses the project and why it’s so important for patients to tell their doctors about how they want to spend their last days. "

How would you like to die? A conversation with Stanford's VJ Periyakoil | News Center | Stanford Medicine

Palliative Chemo Worsens Quality of Life in Dying Patients

 "Patients with end-stage cancer often receive chemotherapy, under the assumption that it will improve their quality of life or may even extend survival. However, new data suggest quite the opposite.

The new findings come from a study involving 661 patients with progressive metastatic cancer, of whom about half (n = 312) received at least one dose of chemotherapy as a palliative treatment. The investigators found that chemotherapy did not improve quality of life and, in fact, made it worse. There was also no benefit to overall survival."

Palliative Chemo Worsens Quality of Life in Dying Patients

“Death doulas” are helping Americans savor the last days of their lives - Quartz

"Like birth doulas, death doulas don’t play a medical role. They work in concert with doctors, nurses, and other healthcare professionals, but don’t replace them. The terms can vary, as do the roles—alongside “death doulas” there are death midwives, death coaches, end of life guides, thanadoulas, and soul midwives, among others. And while some step in earlier or later in the death and mourning process, all aim to provide practical and emotional support at the end of life.
In a world where doctors and nurses tend to be pressed for time, family and friends are often anxious and upset during death, and not everyone is part of a supportive religious community, death doulas willingly walk into a void that would otherwise see many facing life’s inevitable end without enough help."

“Death doulas” are helping Americans savor the last days of their lives - Quartz

Friday, August 21, 2015

Jimmy Carter cancer: Melanoma on the brain -

 "I do have deep religious faith, which I'm very grateful for, and I was pleasantly surprised that I didn't go into an attitude of despair or anger or anything like that. I was just completely at ease."

President Jimmy Carter, on his cancer diagnosis.

Jimmy Carter cancer: Melanoma on the brain -

Thursday, August 20, 2015

Why dying at home is not all it’s cracked up to be | The Caregiver Space

"Dying at home may be awesome for the dying. It’s hard to say, since none have bothered to fill out a customer satisfaction survey from the other side. For family caregivers, the home hospice experience is not always as rosy as it is portrayed. It can be a gut-wrenching, soul-draining nightmare that no amount of therapy will ever be able to rectify."

Why dying at home is not all it’s cracked up to be | The Caregiver Space

A Debate on Assisted Suicide Approval Procedures (UK)

Assisted dying is being debated in the UK parliament again, the private members’ bills presented by Charles Falconer and Rob Marris require a High Court judge to confirm decisions by doctors to approve assisted suicide. Jacky Davis thinks that this is sufficient to protect vulnerable people; Ilora Finlay does not. Read their head to head article.

Grief and loss: Grieving properly beats trying to forget |

 "While grief took center stage for me and her close family not terribly far off were feelings of guilt. For some time we continued to be tormented with the thought that because we were all so consumed with our father’s advancing Alzheimer’s disease we, albeit unintentionally, neglected to notice our mother’s health decline.
In a blog titled “Grief Healing,” a reader shared her feelings following the death of her parent. The blogger writes, “It’s safe to say that, when someone dearly loved dies, every single one of us can find something to feel guilty about — but feelings aren’t always rational, accurate or justified, and they aren’t necessarily right or wrong, they just are.”
That message can be validating for many people, particularly for caregivers. Grief educator Alan Wolfelt writes, “The if-only’s are natural for people to explore, even when there is no logical way that you are responsible for the death. But what is often felt is a lack of control over what has happened.
There is a common expression that “time heals all wounds.” Often, the intense feelings of uncertainty, sadness and grief will hopefully become less painful with time. However, some people who have suffered a loss may require additional interventions to help them to move forward as they “re-enter the world.”
It is suggested by some bereavement counselors that it may be of benefit to progress slowly when returning to familiar routines and delay (as best able) in making significant life changes. Take time to remember, reminisce and give in to emotions. Psychologist Maria Lamia writes, “Grief is an emotion that sends a vague alert to help you to remember, rather than to forget. What most people do with grief is attempt to forget — to get over it — which is quite contrary to the purpose of the emotion. Rather than try to forget, one must attempt to remember and cooperate with what your emotion is trying to convey.”
Allow time to grieve, take time to honor a loved one’s memory, cry today and, if needed, cry tomorrow. While not easy, try to avoid thoughts that revert back to phrases such as “if only” or “maybe we should have.”"

Grief and loss: Grieving properly beats trying to forget |

The teen interns at Woodlawn Cemetery are learning how to restore 19th century gravestones.

"Many of the interns had never been to Woodlawn Cemetery before beginning the program. Teddy Espinal, 18, hadn't spent much time in graveyards at all. "I look at the cemetery differently now," he says. Before this I used to be like, ‘Oh, dead people.’ But now I think about stones, and maintaining and cleaning and working on stuff. It’s less scary."

The idea of spending summer days among the dead never fazed intern Melanie Ayala. Growing up in a Mexican family where the Day of the Dead was celebrated each year, Ayala always revered cemeteries, an attitude that has influenced her approach to the daily tasks at Woodlawn. 

"I always talk to the headstones," she says. "I was cleaning this one, her name was Sophia. Sophia Stark. And I was like, 'I got you, Sophia. I’m going to clean you right up.' "

When working on the stones, Ayala thinks about the lives of those buried beneath. "I pay attention to the names, and I pay attention to the dates," she says. "I saw a few headstones that had my birthday. It just makes you be happy that you’re above ground for another day.""

The teen interns at Woodlawn Cemetery are learning how to restore 19th century gravestones.

Wednesday, August 19, 2015

Could Everybody Stop Trying to Pretty Up Death? It’s Not Working. - Modern Loss

"My uncertain faith stretches toward the fragile hope that there is life without suffering beyond this one. My mind clearly understands that Friday night’s accident could have also killed my friend and her daughter, and I am grateful that it did not. But saying these things right now, emphasizing the perceived “good part” and coupling it with the trite (and Hollywood, not theological) sentiment that Heaven is rejoicing over its newest angels, does not comfort me. It does not negate the ugly truth I know. The ugly truth I've lived."

Could Everybody Stop Trying to Pretty Up Death? It’s Not Working. - Modern Loss

A Dog on His Master, by Billy Collins

by Billy Collins

As young as I look,
I am growing older faster than he,
seven to one
is the ratio they tend to say.

Whatever the number,
I will pass him one day
and take the lead
the way I do on our walks in the woods.

And if this ever manages
to cross his mind,
it would be the sweetest
shadow I have ever cast on snow or grass.

Ask Amy: Is father’s advance directive open to interpretation?

Very wise counsel from @askingamy about honoring a father's wishes, even when the mother objects.

"DEAR AMY: My father is 91 and has dementia. He recently had a health scare. I learned he gave an advance directive with a “do not resuscitate” order to my brother several years ago.

My mother is in good health and she would miss my father if he died.

I told my brother that giving the DNR order to the doctor was condemning Dad to die and that we should follow Mom’s wishes to keep him alive.

Mom does not want confrontation and agrees with everyone she talks with, but I know what she really wants.

My father signed the directive years ago and I think my mother’s wishes should prevail. How can I get my brother to understand he is tearing our family apart by following those outdated instructions? -- Angry in Anaheim

DEAR ANGRY: If your mother agrees with everyone she talks to, then how can you be sure you know what she really wants?

If your father filled out this advance directive and DNR when he was of sound mind (and it is legally valid), then it is HIS wishes — not yours or any other family member’s — that should prevail. The whole point of instituting this directive is to ensure that the individual’s wishes are respected, and your father should be given credit for having the foresight to do this.

You are obviously having a very hard time with all of this. You should talk to a hospital social worker and family members to understand and come to terms with your father’s directive."

Ask Amy: Is father’s advance directive open to interpretation?

Tuesday, August 18, 2015

I’m Sorry I Didn’t Respond to Your Email, My Husband Coughed to Death Two Years Ago -- Rachel Ward

"I’m missing him. Obviously. A lot. BUT: I have a cousin who’s also a widow, and she told my sister that she’s not sure if she’d bring her husband back. Which sounds TOTALLY CRAZY to other people, BUT: When you experience a loss like this, you get to see a really wild new amount of life. Suddenly the range of the type of sad you can feel, to the type of happy you can feel, is busted open. The spectrum from happy to sad isn’t a foot wide anymore — it’s as far as your arms can stretch and then to the edges of the room and then up the block and over into the next neighborhood. So I am not happy that Steve died. But I am happy a lot of the time, which I didn’t really anticipate on this day two years ago....

Probably the biggest finding of the past two years for me is that being comfortable being uncomfortable is a very effective way to be a human.
I am constantly trying to teach myself to watch my feelings as they pass through me, rather than chasing them away with Manhattans or Ambien or Netflix. I often fail at this. I am trying harder to engage with people as they are — not being afraid of strangers, asking better questions, really listening to the answers, not being afraid to go to a second location, being less judgmental.

Basically, I’m trying to have an open heart. I’ve learned that it’s really hard to do, but I think it’s probably the Step 1 of any attempt to really be alive, following something like this."

I’m Sorry I Didn’t Respond to Your Email, My Husband Coughed to Death Two Years Ago

'via Blog this'

My brother is dead and I am still alive -- Sam Friedman

 "The first time you hear that someone you love is dead, the inclination is to disbelieve. At least, that’s how it was for me. The reason for this is simple: For as long as I have known my brother, he has been alive. This is a simple fact, one with no margin for error and no possibility of being misconstrued. When my Dad told me that this simple fact was no longer true, it simply did not compute. It was a direct affront to a truth so basic that when it finally broke through my confusion a moment later, it started wreaking havoc on my psyche pretty much immediately, deconstructing and reconstructing reality with a terrifying, menacing efficiency. And though the pace of the menace has slowed, it is this changing of fundamental fact that now, upon returning to an emotional stasis, continues to undermine me at every turn."

My brother is dead and I am still alive

'via Blog this'

"Two Linen Handkerchiefs" a heartbreaking poem of loss by Jane Hirsh´Čüeld

How can you have been dead twelve years

and these still

A Grief So Deep It Won’t Die - The New York Times

The death of someone beloved often brings deep sadness. Usually, however, the intense grief of early mourning begins to ebb as months pass, and people alternate between continuing sorrow and a growing ability to rediscover life’s pleasures.

What distinguished Ms. Schomaker’s suffering was its sheer duration. She had been mired in grief for nine years when she saw an announcement from Columbia University, where researchers who had developed a treatment for “complicated grief” were seeking participants in a study.

Maybe this new approach could help, Ms. Schomaker thought.

Complicated or prolonged grief can assail anyone, but it is a particular problem for older adults, because they suffer so many losses — spouses, parents, siblings, friends. “It comes with bereavement,” said Dr. Katherine Shear, the psychiatrist who led the Columbia University study. “And the prevalence of important losses is so much greater in people over 65.”

In a review in The New England Journal of Medicine earlier this year, Dr. Shear listed several symptoms characteristic of complicated grief: intense longing or yearning, preoccupying thoughts and memories and an inability to accept the loss and to imagine a future without the person who died.

Often mourners with these symptoms are convinced that had they done something differently, they might have prevented the death. Severe and prolonged compared with typical reactions, complicated grief impairs the mourner’s ability to function.

“Adapting to loss is as much a part of us as grief itself,” said Dr. Shear, who directs the Center for Complicated Grief at the Columbia University School of Social Work. With complicated grief, “something gets in the way of that adaptation,” she said. “Something impedes the course of healing.”

A Grief So Deep It Won’t Die - The New York Times:

The Caregiver Next Door - The New York Times

It occurs to me that there probably are thousands of people like this, unobtrusively supporting tens of thousands of elderly friends and neighbors in ways large and small.
Maybe you know someone who plays a similar role; maybe you’re the one dispensing soup and giving rides. A number of the folks in my dad’s building are frail, with failing sight and hearing, walkers and canes. Some are in their 90s now. To have someone close by to call makes an enormous difference.
When I asked Jo Ann what led her to become an unpaid social worker, she mentioned that her father died when she was a teenager and that being with old people was a pleasure for her.

But at root, her motives are simpler. “They need help,” she said of her neighbors. “So if I can do it, I help.”
She and Fred won’t show up on any government or academic survey of caregiving. I doubt they’d even think the phrase applies to them. Yet I personally think she’s keeping a half-dozen people out of assisted living or nursing homes, and the only way I can really say thanks is to send an occasional box of Godiva chocolates (her favorite). And to write this post.

And to be conscious, myself, of the older people around me who could use a hand.

The Caregiver Next Door - The New York Times

Monday, August 17, 2015

Why You Should Cry Your Eyes Out -- Rabbi Evan Moffic

 "In truth, however, tears are a sign of strength. They are a sign of life. They are a sign of real feeling. We cry because we are alive. We cry because we care.

The ancient Israelites knew this truth. They saw tears as sacred. Several decades ago, for example, archaeologists discovered a 3000-year-old vessel. It served as a sacred container for human tears.

Sometimes we do not know our feelings until we let them out. Tears do so. Tears, uniquely, can express a range of feelings, often seemingly opposite ones. We cry in pain. And cry in joy. We shed tears of loss and tears of happiness.

What happens when we don’t let ourselves cry? We strangle our feelings. We hold them up inside.

Sometimes holding inside our feelings is necessary. Yet, over time we can become acclimated to it. Hiding our feelings becomes natural, and we become callused and insensitive. We forget how to love, how to cherish, how to feel, and feel deeply. We may lose the pain, but in so doing, we also forget the joy.

I tell grieving family members to let themselves cry. Tears testify to their love. They evoke the tenderness and intimacy that make life meaningful and sacred.

One writer calls tears “a sacrament of love.” They are an x-ray of our heart. Even  for the ancient rabbis—who privileged  study and the intellect as the critical means for relating to God—tears transcended other forms of worship."

Why You Should Cry Your Eyes Out

Saturday, August 15, 2015

Death Is Nothing At All Poem by Henry Scott Holland - Poem Hunter

Death is nothing at all.
I have only slipped away to the next room.
I am I and you are you.
Whatever we were to each other,
That, we still are.

Call me by my old familiar name.
Speak to me in the easy way
which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.

Laugh as we always laughed
at the little jokes we enjoyed together.
Play, smile, think of me. Pray for me.
Let my name be ever the household word
that it always was.
Let it be spoken without effect.
Without the trace of a shadow on it.

Life means all that it ever meant.
It is the same that it ever was.
There is absolute unbroken continuity.
Why should I be out of mind
because I am out of sight?

I am but waiting for you.
For an interval.
Somewhere. Very near.
Just around the corner.

All is well.

Nothing is past; nothing is lost. One brief moment and all will be as it was before only better, infinitely happier and forever we will all be one together with Christ.

Henry Scott Holland

Pulse-Voices from the Heart of Medicine

Check out Pulse -- a collection of stories by health professionals about the frustrations and satisfactions of their days. Here is how it began:

"I began to wonder what it would be like to have a publication that told the real story of medicine, the one that my colleagues and I experienced every day. A publication that could listen and respond when someone such as the hospital's director of nursing said, as she'd said to me in a stairwell, “For the first time in my long career, I’m ashamed to be in this business.”

A few years after this memorable fire drill, Pulse--voices from the heart of medicine was launched in early 2008 by the Department of Family and Social Medicine at Montefiore Medical Center and Albert Einstein College of Medicine in the Bronx, with the support of colleagues and friends around the country.

Pulse arose out of a belief that our stories and poems can make a difference. They can heal our hurts; they can teach our students to be more compassionate; and they can reveal the truths that need to be told if our healthcare system is ever to right itself. They can bring us together--patients, nurses, doctors, everyone--to share our experiences and achieve a goal we all believe in: better health care for all."

Pulse-Voices from the Heart of Medicine - The Story of Pulse

Friday, August 14, 2015

Oliver Sacks: Sabbath - The New York Times

 "And now, weak, short of breath, my once-firm muscles melted away by cancer, I find my thoughts, increasingly, not on the supernatural or spiritual, but on what is meant by living a good and worthwhile life — achieving a sense of peace within oneself. I find my thoughts drifting to the Sabbath, the day of rest, the seventh day of the week, and perhaps the seventh day of one’s life as well, when one can feel that one’s work is done, and one may, in good conscience, rest."

Oliver Sacks: Sabbath - The New York Times

Zen and the Art of Dying Well - The New York Times

 "According to the National Institute of Health, 5 percent of the most seriously ill Americans account for more than 50 percent of health care spending, with most costs incurred in the last year of life in hospital settings. Economists call this a “cure at all cost” attitude. And in the next 25 years, longer life spans and the aging of baby boomers are expected to double the number of Americans 65 years or older, to about 72 million.

What if the most promising way to fix the system is to actually do less for the dying?

That’s what the not-for-profit Zen Hospice Project has been trying to prove through a fascinating, small-scale experiment in San Francisco’s Hayes Valley neighborhood.

The project, which had its origins in the San Francisco Zen Center in 1987, takes the typical hospice approach of caring, rather than curing, and puts an East Asian sensibility on it. In line with Zen Buddhist philosophy, it trains its volunteers, nurses and even cooks to care mindfully. That might mean sitting in meditative silence at the bedside of someone who is dying. Or focusing on the senses as the most direct connection to the present moment of life — cooking a fragrant meal with fresh ingredients, giving a tender hand massage, singing a favorite song."

For someone who is dying, the past can be too complicated to contemplate and the future is jarringly unknown. Focusing on the present, Zen Hospice Project believes, is where the potential for living most meaningfully — even while dying — exists.

Zen and the Art of Dying Well - The New York Times

Thursday, August 13, 2015

Faces Of Palliative Care

‘Sit Still and Uncover your Eyes’ - Modern Loss

"The passageway of grief is lined with a thousand doors. I’ve read this description in a variety of places, not attributed to anyone in particular, but I like it. I often picture the long hallway ahead of me, light sneaking out from underneath the closed doors. In the early weeks after Mack’s sudden death I would stand in this hallway unsure of what to do. But now, I open the doors and walk in because I always find him there."

‘Sit Still and Uncover your Eyes’ - Modern Loss

A Lesson in Dying: A Nurse With Cancer Offers Herself as Instruction in ...

The Cost of Dying: End-of-Life Care (60 Minutes)

Someday, We Will Die |Lynne Meredith Golodner

"I remember when my grandmother died thinking and writing about how we work so hard to plan our entry into this world, with birth plans and preparation classes, to achieve the most peaceful and healthy birth. But when it comes to exiting this world, which, yes, we all will eventually do, we shy away, afraid of the unknown.

Let’s just say it: we don’t know what happens after we die. Where we go, whether we are aware, whether we come back. It is all a big black blank canvas.

What’s life worth if I can’t take the chance of jumping off the cliff into the waiting waters below?
And so we push it from our minds, convinced it will never really happen to us, or if it does, it will surely be a long time away from now. So we don’t need to think about it, or focus on it, or live as if it’s coming.

But it is coming.

So that fight we had last week? Why did we waste the time?

The zipline I was afraid to leap onto? Why didn't I just try?

We skirt the border of safe and comfortable and familiar, living so far from the edge because we want to protect…what, exactly?

If we lived as if today were the only day, or perhaps the last day, we would live so differently. We might not immerse ourselves in the mania of get-work-done or clean-the-house or save-money. We might jump into the pool or leap off the clip into the cold, cold lake or join a rowing team because the river is there and our hearts are beating and we have the strength to pull those oars and bend our knees and go-go-go along the water’s surface."

Someday, We Will Die |Lynne Meredith Golodner

Sunday, August 9, 2015

Doctor seeks better process for discussing end-of-life care | Geelong Advertiser

 "The senior doctor fought for his elderly father’s right to a peaceful and dignified death free from intervention that could prolong suffering in an attempt to add a little more time to an ailing life.

A clinician accustomed to dealing with death, Dr ­Orford’s battle for “patient-centred” care in an interstate hospital was eye opening ­despite his expertise.

His family’s quest to speak to the doctors who mattered took days, and they were told staff would apply full resuscitation despite his father’s rapid mental and physical decline. Referral to a palliative care team took more than a week.

“If someone had ­approached us and said, ‘Your father has advanced dementia, this is probably his last year of life, he’s confused and distressed and you're confused and distressed, can we talk,’ it would have made such a difference,” Dr Orford said.


Doctor seeks better process for discussing end-of-life care | Geelong Advertiser

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Caregiving: A Burden So Heavy, Until It’s Gone -

"When she died so suddenly, still issuing hilarious pronouncements and taking our teenagers’ side in generational disputes, I felt as if a madman had blown a hole through my own heart. Unmoored, I could not stop weeping. Caring for elders is like parenting toddlers — there’s a scan running in the background of every thought and every act, tuned to possible trouble. And there’s no way to shut it down when the worst trouble comes."

Caregiving: A Burden So Heavy, Until It’s Gone -

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7 Questions To Ask Your Parents Before They Die

An excellent list from Ann Brenoff, including these questions:

Who are all these people in the old family photos?  (My comment -- Get them to walk through the house and go through the jewelry box or any other collection of treasures and tell you where they came from -- and film it.)

Also: Questions about the family tree, what the best and worst times were, family history.

7 Questions To Ask Your Parents Before They Die

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A Doctor's Thoughts on Alternative Therapies

On one hand, we want to do everything we can to give patients the perception and the reality of control.  On the other hand, we do not want to give them false hope, and as Ranjana Srivastava, points out in The Guardian, that is especially difficult when some "alternative" therapies thrive on a sense of insiderhood and secrecy and often bill themselves as underdogs at war with traditional medicine. But sometimes the therapies themselves can undermine or contravene therapies that are based on extensive, documented research.
The community practitioners who are best at checking in with oncologists are physiotherapists, palliative care nurses and general practitioners. They seem to have no qualms about sharing doubt, seeking advice and negotiating compromise.
But the point of many alternative therapies seems to be in their secret powers of healing. I know it’s often said but I honestly don’t consider arrogance a good explanation for why oncologists and alternative practitioners don’t talk. I would, however, say that dismay and distrust feature heavily. As does the troubling realisation that a doctor can face reprimand for inadvertent error but an alternative practitioner can get away with intentional harm.
This is not a reason to excuse the former but to regulate the latter. Perhaps this would make it easier to follow the advice that doctors need to familiarise themselves with the various forms of complementary and alternative medicines. It is conceivable that some worthwhile measures are tainted by the same brush as a lot of fraudulent ones.
Health literacy moves at a very slow pace. The alternative health industry, worth many billions of dollars, marches briskly. It will always attract unguarded patients who will cling to the faintest promise of recovery without associated harm. Whenever money changes hands and the premise sounds too good to be true, the motto remains: Caveat Emptor.

What Do Doctors Say to  'Alternative' Therapists When a Patient Dies?

From "The Little Prince"

"In one of the stars
I shall be living
In one of them I shall be laughing
And so it shall be as if all the stars were laughing,
when you look at the sky at night."
--Antoine de Saint Exupery

Friday, August 7, 2015

Tips for a work agreement with a home health care provide for an aging senior:
Step #1: Pay attention to details.When it comes to creating an effective work agreement, you’ll need to be as specific as possible and recognize that outlining the details is important to having a smooth working relationship and peaceful interactions with the patient and the family. Think about conflicts, problems, or other daily situations that could be uncomfortable or difficult to discuss. Outline your policy and expectations in writing, so it is made clear from the get go. Write clearly and succinctly with sentences that are to the point and easy to understand.
Step #2: Don’t forget the basics.You may spend a lot of time writing your policies on some of the “what-if” situations, but don’t forget to include some of the basic guidelines in your work agreement such as hourly pay rate, overtime policies, living arrangements, and basic daily duties that you are able and willing to provide to the patient and family. You should also set a policy for sick time and vacation time.
Step #3: Outline your emergency procedures. No one wants to imagine emergency situations happening, but a responsible caregiver has solid emergency procedures in place, just in case something happened. Define your policy on emergencies and clearly state what you would do in the event of an emergency occurring while the patient is under your care.

Good advice from HomeWork Solutions

Thursday, August 6, 2015

A Marriage to Remember | Alzheimer's Disease Documentary

Bobby Wonderful: An Imperfect Son Buries His Parents - Kindle edition by Bob Morris. Politics & Social Sciences Kindle eBooks @

His mother's last word was his name. His father's was "Wonderful." Together they inspired the title for this true story of love and redemption. 
Bob Morris was always the entertainer in his family, but not always a perfect son. When he finds his parents approaching the end of their lives, he begins to see his relationship to them in a whole new light and it changes his way of thinking. 
How does an adult child with flaws and limitations figure out how to do his best for his ailing parents while still carrying on and enjoying his own life? And when their final days on earth come, how can he give them the best possible end?

Bobby Wonderful: An Imperfect Son Buries His Parents - Kindle edition by Bob Morris. Politics & Social Sciences Kindle eBooks @

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Awareness and decision making at end of life | gw4dyingwell

"An important part of this support, particularly in cases of older people dying with reduced agency, is being able to pick up on and respond to those gestures that reflect the dying person’s uniqueness or ‘personhood’,  in spite of the impact of, for example, dementia. This is what I learned from interviewing bereaved people, as well as being something I experienced more personally last year over a period of 4 months when my mother was dying from dementia. It was only then that I really understood that being preoccupied with preserving the dying person’s uniqueness, and therefore their dignity, was down to the context in which that person died. Today that context is an increasingly complex, multi-agency one in which the needs of both the dying person and the family may frequently become subordinated to the ‘system’.


Awareness and decision making at end of life | gw4dyingwell

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Can the end of life be an opportunity for social change? | openDemocracy

Through caring for my mother I also learned to let go. After she died, I felt a loss of identity. I couldn't quite re-orient myself as a motherless child, and felt like I had gotten lost in the natural order of things. I still feel this way sometimes when I remember that she’s gone. 
To paraphrase mental health researcher Allan Kellehear, grief is a ‘forever thing’ and requires ‘forever strategies’—it’s not a matter of ‘returning to normal’ following a loss. Workplaces may offer a few bereavement days and friends may check in for the first few weeks, but the physical, psychological, emotional and spiritual costs of loss last a lifetime. 
As part of my strategies for coping, I began to read personal memoirs about love and loss because it made me feel a sort of comforting solidarity to join the ranks of the bereaved. It also allowed me to become more settled in the reality of my own future mortality. And while I couldn’t change the grief I felt, I knew I could choose how to engage with it, spending many hours exploring the corridors of darkness and light. 
I didn’t have a single, all-revealing ‘aha’ moment, but rather a series of insights which began to connect my own experience with the experience of others, and with the broader social, political, cultural and economic order of things. Part of my ‘forever strategy’ has been to look at the ways in which curiosity, compassion and conversation can transform the way we think about the end of life, and about caring for those who are dying.
The heart of the matter is that the universality of death and loss can be a source of connection and solidarity. We have an active role to play in supporting each other in times of grief and mourning, much like we rally together in times of celebration and social struggle. But for that to happen we must change how we think about elder care in fundamental ways.

Can the end of life be an opportunity for social change? | openDemocracy

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DeadSocial - Prepare for Death Digitally & Build Your Digital Legacy - Mobile Phone

A checklist for your social media:

  • Do you have a password / lock for your mobile phone? 
  • If so, have you told at least one person what it is? 
  • Have you transferred / backed up the photos and videos on your phone?
    Have you transferred / backed up the photos and videos on the phones that you have previously owned? 
  • Have you written down / told someone what you would like to happen to you your mobile phone and the media on it once you have died? 
  • Would you your partner like to keep your phone in order to view the messages you shared whilst alive? This question becomes even more important if your partner has had their phone lost or stolen and therefore is unable to view conversations previously shared. 
  • Have you thought about what will happen to your mobile phone tariff and phone number when you die? You may want to review your monthly tariff and consider switching to a Pay As You Go (PAYG) offer. 
  • If your network provider allows you to do so you will need to tell the recipient of the phone (or SIM card) to 'top up' the phone with credit in order for it to remain active. How often the phone requires 'topping up' will depend on the network the phone number is assigned to.

DeadSocial - Prepare for Death Digitally & Build Your Digital Legacy - Mobile Phon

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Ain't the Way to Die | Eminem/Rihanna Remixed |

Sharing Art Helps Medical Students Connect With Dementia Patients : Shots - Health News : NPR

Hannah Roberts was a first-year-medical student at Columbia University College of Physicians in 2013 when she noticed her classmates were having an especially tough time relating to dementia patients. 
"There's a misconception that dementia patients are like toddlers in a way," Roberts says. Many medical students, she says, "are intimidated at the challenge of having to get accurate histories and establish a connection with someone who has a limited ability to communicate." 
Roberts had some previous work experience with Alzheimer's patients and knew the encounters didn't have to be so strained. "These are adults who've led full rich lives, who have lots of knowledge and personalities that are still very present," she says. But that's not always initially apparent "unless you dig a little." 
Could a field trip together to the local art museum help? 
...The students' scores afterward suggested a "modest increase" in comfort level in dealing with dementia patients, the researchers say, but the students' comments suggested the lessons ran even deeper.

"It gave us a chance to interact with patients with dementia in a context where their dementia isn't the main focus," one student told the researchers. "We get to see what they are capable of — more so than what they are incapable of — which so often is what cognitive tests force a patient to do."

Sharing Art Helps Medical Students Connect With Dementia Patients : Shots - Health News : NPR:

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Tuesday, August 4, 2015

The device kept him alive, but was the pain and suffering worth it? - The Washington Post

"In countries such as the United States with ready access to new technologies, many patients have the attitude that if something can save you, why not try it? Opting out of available treatment is often seen as giving up. And doctors might equate nonintervention on their part to failure to help a patient.

Discussing other options can be difficult. A study presented at the 2014 Quality of Care and Outcomes Research Scientific Sessions said that 52 percent of surveyed heart-failure clinicians reported feeling reluctant to discuss end-of-life options with patients, citing their own discomfort as well as the belief that patients would feel uncomfortable with the subject. Other respondents said that they didn’t want to make the family lose hope.

“You can’t stop it,” Robert tells Beverly, referring to his continuing medical complications, but she is determined. “Yes, I can!”

Unfortunately, the truth is that she can’t. She has not been able to control the infections, lesions or intermittent periods of confusion and clumsiness that Robert suffers, knocking glasses over in the kitchen and bumping into the furniture.

Would they have declined LVAD therapy if they had known then what they know now? Probably not, Beverly says. She reminds herself of their larger goal, which has not changed: Keep Robert alive. How could they have known for sure what would happen? What if LVAD therapy had both extended Robert’s life and improved his quality of life, and they had never given themselves the chance to find out?


The device kept him alive, but was the pain and suffering worth it? - The Washington Post

Dead at noon: B.C. woman ends her life rather than suffer indignity of dementia

 "On Monday morning shortly before noon, Gillian Bennett dragged a foam mattress from her home on Bowen Island to one of her favourite spots on the grass, facing a craggy rock cliff, the place she had chosen to die.

Bennett, who was 85 and in the early stages of dementia, chose to take her own life with a draught of good whiskey, a dose of Nembutal mixed with water and her husband of 60 years by her side.

“I held her hand,” said Jonathan, a retired philosophy professor. His voice is reflective, resonant, measured. “I agreed with her choice.”

Before the shadows of dementia began to cloak her mind, Bennett created a website,, to be made public after her death, on which she makes a passionate case for physician-assisted options for the terminally ill and elderly."

Dead at noon: B.C. woman ends her life rather than suffer indignity of dementia

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Society for Old Age Rational Suicide

"The main long-term objective of SOARS is to get the law eventually changed in the UK so that very elderly, mentally competent individuals, who are suffering unbearably from various health problems (although none of them is “terminal”) are allowed to receive a doctor’s assistance to die, if this is their persistent choice. Surely the decision to decide, at an advanced age, that enough is enough and, avoiding further suffering, to have a dignified death is the ultimate human right for a very elderly person."

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Healthy British nurse ends her life in a Swiss clinic because of fear of getting old - The Washington Post

 "A healthy retired British nurse who had worked with the elderly has ended her life in a Swiss clinic because she was afraid of getting old and being unable to to kill herself, a British newspaper reported Monday.

Gill Pharoah, 75, who suffered no serious debilitating illness and was still active, was given a lethal injection and was in good enough spirits to joke with a doctor before she died, the London Times newspaper reported.


Healthy British nurse ends her life in a Swiss clinic because of fear of getting old - The Washington Post

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Monday, August 3, 2015

The Farewell Party

"The Farewell Party" is a bittersweet Israeli film about a retired inventor who is asked to create a Kevorkian-style machine to help his friend have a gentle, peaceful death. It is tender, funny, touching, and wise.

Sunday, August 2, 2015

Reinventing Death for the Twenty-First Century

 "Increased longevity paired with ageing baby boomers means that our older population is growing at record speed — a phenomenon in developed countries from the UK to Japan. According to Professor David Clark, a researcher in end-of-life care at the University of Glasgow: “We’re seeing what we regard as a massive global issue. There’s a huge wave of dying, death and bereavement.” At the moment about one million people die each week around the world; within 40 years, that number is expected to double.

 Compounding the impact of this wave of death is the fact that, for many, the rituals, artefacts and meaning once found in religion no longer provide emotional solace. In the most recent UK census from 2011, the proportion of the population who reported they have no religion reached a quarter — growing to 25.1 per cent from 14.8 per cent a decade ago. A rising trend of agnosticism, atheism and non-affiliation with religion has also been surveyed in countries including France and the US.

 Dissatisfaction with legacy service providers and striking shifts in demographics have converged to make alternative ways of dealing with death — that universal experience — in demand. Today’s broadly secular society, especially one in which more of us will soon be dying than ever before, has to find contemporary strategies for death.

A new generation of designers are responding to this call, with novel and challenging ways of thinking. When well-designed technology can help improve our every living moment, why should it desert us in death?"

Reinventing Death for the Twenty-First Century — Medium

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AIDS Assisted Dying Should Be a Right by Tim Barrus

 "Dying just took me in its arms, and I was free.

I did not ask to be kept alive on machines. I did not want it then, and I would not want it now.

Dying was not a monster. It was nice. It was safe. There was no pain. The pain had ended and the dying had taken over. Five more minutes, and I would have died. I was okay with it.

Dying was my good friend.


AIDS Assisted Dying Should Be a Right — Medium

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Saturday, August 1, 2015

Read Mark Zuckerberg and Priscilla Chan's movingly honest post about miscarriages

 "You feel so hopeful when you learn you're going to have a child. You start imagining who they'll become and dreaming of hopes for their future. You start making plans, and then they're gone. It's a lonely experience. Most people don't discuss miscarriages because you worry your problems will distance you or reflect upon you — as if you're defective or did something to cause this. So you struggle on your own.

In today's open and connected world, discussing these issues doesn't distance us; it brings us together. It creates understanding and tolerance, and it gives us hope.

When we started talking to our friends, we realized how frequently this happened — that many people we knew had similar issues and that nearly all had healthy children after all.

We hope that sharing our experience will give more people the same hope we felt and will help more people feel comfortable sharing their stories as well."

Read Mark Zuckerberg and Priscilla Chan's movingly honest post about miscarriages

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End of Life Decisions: Can We Talk About It?

A Trip to the Museum Teaches Med Students About Dementia

"Having medical students participate in a museum-based art program designed specifically for patients with dementia and their caregivers can instill more positive attitudes and perceptions about the disease, new research shows."

A Trip to the Museum Teaches Med Students About Dementia

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Reframing Memories of a Complicated Father After He's Gone

"In recent years I’ve been blown away by the power of focusing on the positive. This can be done without blindness to abuse or suffering. And even the most conflicted and harmful people have their moments when they shine, when their gifts lift up those around them. These may be tiny or brief, but I’ve never met a person who was pure sadism, nor have I met some kind of demi-god who was exclusively uplifting. We all contain ebbs and flows of subtle intentions and feelings.

When my father was gone, I chose to focus on those positives and capture them here. Now when each Father’s Day arrives, my memories of him as a good man and committed dad grow with those passing years. The hurt and bitterness fade. I’ve been meaning for instance to write a post on having an “adventure mindset.” It’s a set of intentions that transcend our circumstances, go beyond any limitations of time or resources and help us to engage in each day with wonder, curiosity and awe."

Once Dad’s Gone, The Good Memories Can Grow — Dad Stuff — Medium

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When I’m Gone — Medium

A boy's father dies at age 27, leaving letters behind for the big events in his life: "When you have the worst fight ever with your mom," "when you have your first kiss," "when you become a father," and even "when your time comes."  An unforgettable read.

When I’m Gone — Medium:

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After the Funeral | From The Writer's Almanac with Garrison Keillor

After the Funeral
by Lisa Erin Robertson

To acknowledge that we

were doing well, my mother

and I made plans, specific times

and restaurants, films and

the friends of my parents, who also

worried about her, and we were never

late, never kept each other waiting, and if

I stayed, she made up the guest room

as she had never bothered when he

was living, like a confirmed agenda could mitigate

an absence; and she who never stopped

being beautiful for him bought thick

sweaters after he died, Fisherman’s

Wife sweaters, knotted boiled

wool for waiting in Northern winds

outside the recoil of waves, so why just

weeks before her death did we go

to the shipwreck cemetery on the Point Reyes

Peninsula, where the last

dead man was buried in 1927 and had

nothing to do with us or my father? Why

did we take the dog and pictures

of ourselves on fallen alder trees, laughing

against the wind that blew

a path from us to the sea?

The Writer’s Almanac for August 1, 2015 | After the Funeral | The Writer's Almanac with Garrison Keillor

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