Tuesday, June 28, 2016

How facing cancer helps you figure out what really matters - The Washington Post

Several years back, a study of breast cancer patients in the journal Health Psychology reported that “positive strategies for coping” tended to lead to “feelings of inner peace, satisfaction with one’s current life and the future . . . [while] the absence of such strategies predicted reports of loss of meaning and confusion.”

How facing cancer helps you figure out what really matters - The Washington Post:

12 Things Not to Say to Grieving Nonbelievers | Alternet

Even for believers, these attempts at comfort can be grating.

"You almost certainly have non-believers in your life. While many of them aren't public about it, around five to 10 percent of adults in the United States are non-religious. When they're grieving -- whether it's a personal death or a public tragedy—they want and need comfort. But the standard ways of dealing with death are often religious. When these are offered to nonbelievers, they typically don't help, and they often make things worse."

12 Things Not to Say to Grieving Nonbelievers | Alternet

Tuesday, June 21, 2016

I didn’t like it, but this was the death she chose - The Washington Post

A daughter-in-law writes about her mother-in-law's decision to die.

"Ellen is dying the way she lived: actively, with a lot of input. At 86, like so many of her contemporaries, she suffers from multiple maladies: a slow-growing leukemia called CLL; a recent mini-stroke; spinal stenosis that pains her legs and numbs her hands; recurring bouts of intestinal distress that leave her dehydrated and housebound. The ailments are awful and life-disrupting, but none of them are finishing her off. She doesn’t want to acclimate herself to wheelchairs, live-in aides and other affronts to her independent self-image. What she wants is to not treat her symptoms, to voluntarily stop eating and drinking, and to die.

While her pronouncement that she’s “had a good run” has left Harry and me sidelined with shock, our eldest son, Ted, understands. A graduating fourth-year medical student in Boston, he has often relayed horror stories about the hospital patients whose bodies are kept alive long after their occupants have experienced any pleasure in them. He’s very close to his grandmother, and for years she’s been telling him how she doesn’t want to die encumbered by lines and tubes, the way his late grandfather Paul did.

Ted finds Ellen an excellent palliative-care doctor near her New Jersey retirement community who consults with the two of them for hours, making sure the patient isn’t suffering from a temporary, treatable depression. The doctor conference-calls with Harry and his two siblings, and they affirm that they all want what she wants. The Do Not Resuscitate and more detailed Physician Orders for Life-Sustaining Treatment forms are filled out and displayed prominently on her dining room table. Jennifer, who has experience in these situations, is available, and she can be at Ellen’s side 24/7. Everything is in place.

Then, a complication: Ellen’s independent living community prohibits outside aides from working there. For my mother-in-law to die in a hotel or apartment rented for the occasion is unthinkable to me. Harry and I are empty-nesters, with a third-floor suite that’s quiet and private. It makes sense that she should die in the guest room above our bedroom."

I didn’t like it, but this was the death she chose - The Washington Post

Still, I Give Thanks by Marie Reynolds

Still, I Give Thanks
by Marie Reynolds

Day fourteen in the radiation waiting room
and the elderly man sitting next to me
says he gives thanks every day because
he can still roll over and climb out of bed.
We wear the same cotton gowns—repeating
pattern of gold stars on a field of blue—that gape
in back, leaving our goose bump flesh exposed.
Lately, I too, give thanks for the things I can do—
sit, stand, take my next breath. Thanks for my feet,
my fingers, the ears on my head. I give thanks
for the scrub jay’s audacious cries outside
my window at dawn. He is a hungry soul,
forever foraging to feed his mortal appetite.
Like him, I want more of everything: more light,
more life, another cup of Darjeeling tea and a silver
teaspoon to stir it with. I want to see my mother again,
before the winter settles in, and when she’s gone,
I want her porcelain Madonna. I want my doctor
to use the word “cure” just once. Each day, supine
on the table, I listen to the razoring whine
of the radiation beam. It hurts to lie still,
the table sharp as an ice floe beneath the bones
of my spine. Still, I give thanks for the hands
that position me, their measurements and marking
pens, the grid of green light that slides like silk
across my skin. I close my eyes and think
of the jay. We wear the same raiment: blood, bone,
muscle. Most days I still feel joy. I give thanks
for that bird, too—invisible feathers, invisible wings—
a quickening, felt deep within the body, vigorous and fleeting.

Friday, June 17, 2016

Teepa Snow Discusses the Ten Early Signs of Dementia

A Sister Mourns Her Brother

When he died, I lost all connection to planet earth. A window opened between dimensions and I climbed right in.

‘Take me with you,’ I repeated. Over and over and over. It was disorienting and at times completely engulfed me. But it was the only place I wanted to or could be. For months I would drift in and out of this state.

And when you articulate this to friends and family, when you try to give words to these feelings, every alarm rings. Everyone starts to worry. Our culture has nowhere to put these dark feelings and sorrow.

No one tells you this. Not in our American culture anyways.

So now that I’ve made it to the other side, I will.

Each individual mourns differently, but I have now witnessed how many people suppress their grief for fear of upsetting others.

First of all, the urge to ‘die’ isn’t exactly about dying. It’s about holding on to your loved one with all your might, about delaying the separation for as long as humanly possible. It comes from the deepest source of connection a human can feel. From a sense that souls are entwined, like a living whole, and that when one half dies the other simply can’t go on.

It is normal, it is born of love and connection, and it is okay.* You will return to this dimension, feel like you can live again, but not until you’ve seen the depths of that darkness.

The saying that kept me afloat on some of my hardest days was, ‘the depth of your grief is equal to the depth of your love.’ That is exactly how it felt.

No One Tells You About Loss, So I Will by Cora Neumann

How this Orlando-bound flight crew went above and beyond for the grieving grandmother on-board - The Washington Post

From the Washington Post, a story about an entire plane of passengers comforting a grieving grandmother whose grandson was killed in the Orlando shooting.
A JetBlue flight attendant shared a moving account of how crew and passengers on an Orlando-bound flight went out of their way to comfort a grieving woman who lost her 20-year-old grandson in Sunday’s massacre.  
 He was Luis Omar Ocasio-Capo, a dancer with big Hollywood dreams. Omar, as friends and family called him, was one of the youngest victims. The grandmother was traveling alone, so Kelly Davis Karas and the other JetBlue employees were instructed to be at her side throughout the journey. The company would have known which passengers had lost loved ones because the airline provided free tickets to any family member or domestic partner of one of the victims who needed to get to Orlando. 
 About halfway through the flight, Karas wrote in a Facebook post, a colleague had an idea to have all of the passengers sign a condolence note for the woman. But people didn’t just scribble their names, they wrote long thoughtful messages that took up pages and pages.
When the flight landed, they made an announcement: “JetBlue stands with Orlando” and then, at the request of some passengers, held a moment of silence for Omar.
 As they got off, Karas said every single passenger stopped to personally greet Omar’s grandmother. “Some just said they were sorry, some touched her hand, some hugged her, some cried with her,” Karas wrote. “But every single person stopped to speak to her, and not a single person was impatient at the slower deplaning process.”

How this Orlando-bound flight crew went above and beyond for the grieving grandmother on-board - The Washington Post:

Thursday, June 16, 2016

Seeing It From the Other Side Part 1: Caregiver Stress & Dementia Coping...

It's Time to Train All Doctors on How to Talk to Patients About End-of-Life Care

"They wanted all the support they could get, including palliative care and hospice at the appropriate times. But instead of partnering with her around his decline, acknowledging his decreased cognitive ability to participate in decisions, and revisiting the shared sense of what had been most important to him over time, the well-intentioned medical team focused on offering more interventions and didn’t acknowledge his dying process. She was told he was not eligible for hospice or palliative care.

She asked me: “How can this be?” Sadly, this is more common than you might think. A recent national poll found that although 99% of the physicians feel end-of-life and advance care planning discussions are important, nearly half reported they do not know what to say and less than a third reported any prior training for these conversations. These findings are not surprising considering a 2011 study found that 45% of those becoming oncologists reported having no explicit training in end-of-life communication.

 We know effective end-of-life communication can make a meaningful difference for seriously ill patients and their families, allowing patient goals and wishes to be aligned with treatment choices....Would end-of-life communication skills training have helped the doctor treating my neighbor’s husband provide more effective care? Very likely. Discussions about one’s goals of care near the end of life are high stakes and often complex....These efforts teach stepwise approaches, like assessing a patient’s current understanding of their disease before giving difficult news, skilled techniques, like focused listening for hints of emotion or distress, and specific phrases, like “tell me more” for an empathic approach. Experts are also beginning to emphasize formal mentored skills practice with increasing focus on role play, with and without actors...In a similar communication course at my own institution, doctors training in geriatrics, hospice and palliative medicine, pulmonary/critical care, and hematology/oncology report increasing their use of certain facilitating phrases like “I wish things were different” and identify specific, personalized goals for continued improvement. A project at Harvard has developed a Serious Illness Communication Guide and training course to trigger and train physicians to have more effective and timely discussions."

It's Time to Train All Doctors on How to Talk to Patients About End-of-Life Care:

The Tank - The Dead Parents Club Solo Show Festival

"If you’re not a member of the Dead Parents Club yet … you will be. That’s why the Tank has brought some of New York City’s top performers to share their harrowing, heartwarming, and often hilarious true life stories of being part of the worst club we all eventually have to join. The Dead Parents Club Solo Show Festival will be held at Standard ToyKraft in Williamsburg, Brooklyn and features storytellers who have performed on The Moth MainStage, RISK! Live, Snap Judgment, and in storytelling festivals and shows across the globe."

The Tank - The Dead Parents Club Solo Show Festival:

Tuesday, June 14, 2016

Monday, June 13, 2016

Questions to ask your parents before they die

"I don’t want to go into detail about my loss. I don’t go into detail about the immense pain that comes with having no parents. I don’t want to talk about how much I miss my mum. I can’t talk about how it feels when everyone around you refuses to address death. In my mind I’ve thought about all of these things a thousand times, but I can’t write a word of it down because it’s still too raw. Here’s the only thing I can think of doing today. Every so often I stumble onto one of those “Things You Must Do Before You Die” lists, the ones that tell you about the adventures you have to take, the high-adrenaline sports you have to try, and the beautiful landmarks you must see. What never makes it onto those lists are the things like, “get to know your parents well.” I don’t think I’ll regret not going sky-diving, or visiting the Antarctic. However, I will always regret that I didn’t get the chance to find out everything I could about my parents."

Questions to ask your parents before they die — Medium:

Saturday, June 11, 2016

Muhammad Ali's funeral: We can't cheat death—but we can control how we die — Quartz

While it may feel scary or overwhelming to think about our own deaths, asking yourself basic questions about how, where, and when you’d want to die, if given the choice, is a critical first step. Would you prefer to be at home or not? Would you want loved ones around you? Do you envision attempts to keep you from dying with resuscitation and life support measures or do you prefer a natural death? These are not easy questions to ask ourselves or conversations to have with our loved ones. But they are necessary ones if we want to leave this world on our own terms and ease the burden loved ones will face when it’s our time to go. 
Unfortunately, the very people we expect to help guide us through these conversations are not well prepared. A recent national poll found that while almost all doctors think having end-of-life conversations with their patients are important, nearly half said they frequently or sometimes feel unsure of what to say and less than one-third reported having had any formal training specifically on talking with patients and their families about end-of-life care.   Why is this the case? Because our medical culture default is set up first to keep people alive at all costs. 
Conversations about how to die can be seen or feel as going in direct opposition to that cultural norm. So what can individuals do? First, consider identifying a legal surrogate decision maker. This person is someone you trust to follow your wishes at a time in the future when you cannot make your own decisions, even if challenging situations arise, like family tensions or unanticipated medical events. Any adult can serve as your surrogate regardless of whether they are related to you or not. Ideally, that person should be very knowledgeable about your values and wishes and formally accept the responsibility. Additionally, consider completing a living will or similar advance directive form. Although this shouldn’t replace conversations with loved ones or your legal surrogate, completing a living will can be a practical way to express your general values and wishes around life support and serve as a guide for loved ones and your healthcare providers. In some states, other documents like a Physician Orders for Life-Sustaining Therapies form may allow you to complete surrogate and living will designations together. Second, learn about palliative care. This specialized medical care focuses on helping seriously ill patients and their families and provides an extra layer of support to address symptoms and the stress of being ill during any phase of treatment. Talking to a palliative care doctor is appropriate at any age or stage of a serious illness. Typically, palliative care is available in most hospital settings and as a home health care service in many parts of the country. Finally, familiarize yourself with hospice, a specialized, interdisciplinary care option for those who are likely to die of a terminal illness in the next 6 months and are no longer pursuing curative treatments. It focuses on helping a person, and their family, live the best they can until they die.   Death is inevitable, but how we die usually is not.   Hospice can be provided at home, in a nursing home, and in an inpatient hospice setting; it is particularly important if you decide you do not want to die in a hospital. When ill, all roads lead to hospitalization and once in the hospital, many barriers can prevent a transition home to die. It’s important that loved ones and healthcare providers know your preference in advance. [emphasis added]

Muhammad Ali's funeral: We can't cheat death—but we can control how we die — Quartz:

How Social Media Expands the Space Between Mourning and Grief - The Atlantic

"Some argue that the likes of Facebook and Twitter have opened up public space for displays of grief that had been restricted to private spheres of secular culture. But rather than reconstructing an outlet for public grief, social media often reproduces the worst cultural failings surrounding death, namely platitudes that help those on the periphery of a tragedy rationalize what has happened, but obscure the uncomfortable, messy reality of loss.

Social media has increased the speed and ease of communication to an unprecedented degree, and yet sites like Facebook and Twitter are poorly suited to grief’s strangeness. By design, social media demands tidy conclusions, and dilutes tragedy so that it’s comprehensible even to those only distantly aware of what has happened. The majority of Facebook posts mourning Lauren’s death were full of “silver linings” comments that were so far removed from the horror of the reality that I found them isolating and offensive. Implicit in claims that Lauren was no longer suffering, or that “everything happens for a reason” are redemptive clauses—ones that have a silencing effect on those who find no value in their pain."

How Social Media Expands the Space Between Mourning and Grief - The Atlantic

Thursday, June 9, 2016

New course on death, dying and palliative care – Palliative Care

"The first massive open online course (MOOC) on death, dying and palliative care starts at the end of this month and it is open to anyone aged 18-100 who has a computer. The four-week course is presented by online palliative care resource CareSearch, which is aiming to increase death literacy and engage people in conversations on the topic. 
CareSearch research fellow Deb Rawlings said the course was not medical or instructive. Instead, it focussed on philosophical musings, posing questions and encouraging reflections while also providing information and resources.

“You can take it at your own pace and dip in and out,” said Ms Rawlings, who is also a lecturer in Palliative and Supportive Services at Flinders University. “You can also participate in discussions as much as you like. Some people will get in there and make comments, and comment on other people’s comments. Others will just sit and read and not join in, and that’s alright as well.”"

New course on death, dying and palliative care – Palliative Care:

Wednesday, June 1, 2016

Forgotten, But Not Gone | Baby Mama

Ann Brown's moving essay about her father's memory loss includes this passage:

"I got up early the next day with him to make breakfast and get him settled. He assured me that he was capable of doing this himself and that I shouldn’t get up just to take care of him, but I couldn’t sleep late even if I wanted to. My brain was on high alert, like when I had newborn babies. And I didn’t trust his breakfast choices ever since I had seen what he made himself: half a bagel with cream cheese and jelly, topped with all his cardiac medications, sprinkled with M&Ms to cut the bitter taste of the meds."

Forgotten, But Not Gone | Baby Mama: