Fraying at the Edges. A Life-changing diagnosis. #Alzheimer's @nytimes

“The Taylors hated the stealth that encased the disease, how it was treated like an unmentionable cousin. They wanted no part of that. Ms. Taylor decided that she would not show herself as some spackled-over person. “It was my decision to let the disease be alive in my life,” she said. “You don’t have to just throw in the towel.”

She didn’t know the order of whom she would tell, nor how to phrase something so shackled with frightful connotations. Your life becomes a script. Alzheimer’s, she knew, leaves its heavy imprint on everyone… 

Just recently, Ms. Taylor had discovered the website To Whom I May Concern, the creation of Maureen Matthews, a psychiatric nurse. It arranges for people in the early stage of dementia to act out plays telling what it is like for them. Ms. Taylor clicked on some videos, at once felt the common spirit. The person saying, ‘People take that diagnosis and assume that you are now officially irrelevant.’ And: ‘It’s not that we want people to treat us as if we have Alzheimer’s. But at the same time we want people to recognize that we have it. Confusing, right? Welcome to our world.’ And: ‘The end stage is our future. But not today’.”

Camp Erin Hamilton. Fun #Camp for #Children and #Youth with #Grief #Support and #Education @moyerfoundation

“Camp Erin Hamilton is an annual three-day camp experience offered at no charge and facilitated by professional staff and trained volunteers of the Dr. Bob Kemp Hospice and Bereaved Families of Ontario - Hamilton/ Burlington. The camp is for children ages 6 to 17 who have experienced the death of someone close to them. Camp Erin Hamilton combines a traditional, high-energy, fun camp with grief support and education.”

The Sky Isn’t Falling @Speed4Sarah in @brainchildmag on her #diagnosis of #ALS.

“I was spinning, untethered from the person I felt I had once been. A marathon runner, a devoted mom and wife, an independent woman who had never particularly liked asking for help. I was consumed by my sadness and confusion, by my anxieties about what was to come.

And then I discovered other people who were like me. Young moms and dads, people in their 20s who never had a chance to start a family, all of them living with ALS. I found them by writing about my experience, by joining a group on Facebook, and by becoming heavily involved with several nonprofit organizations that raise money for ALS research. My people, it turned out, were not the ones in the senior home who had lived long lives and had much to show for it. My people were the ones who were fighting for their lives, fighting for more time with their children, fighting a disease that we’d been told would certainly kill us–and soon”.

My Gift of Grace. Helping everyone have better conversations about end of life.

"My Gift of Grace is a game that helps everyone have better conversations about end of life. These conversations are challenging, but we can rise to the challenge together, and to prove it, we hold public games in Philadelphia on the final Friday of every month.

The game can be played by families, co-workers, teams, strangers, or a mix of any of these. There are no age restrictions or experiences you need to have before you play. The game adjusts itself to the level of comfort of the players and to how long a group wishes to play.

Get the game at mygiftofgrace.com, or find out about our public engagement work at ourcommonpractice.com "

#Dying is Inevitable. #Living is Not. "#Love is Stonger Than #Death" Rest in Awesome Esther.

"Wayne Earl reveals the power of living and loving life by sharing the wisdom of his daughter, Esther Earl, who lost her battle with cancer just before her 16th birthday. Esther's courage, positive spirit and hope for the future transformed all who knew her. She showed the world what it meant to live life before death (via her well known vlogs and blogs) and that love is the engine of life. Esther Earl shared her spark of possibility with great generosity and was the inspiration for author John Green's #1 New York Times bestseller, The Fault In our Stars.

Wayne Earl recently authored the compelling life story of his daughter, Esther Grace, who succumbed to cancer shortly before her 16th birthday. Before she died, a deepening friendship with her favorite author, John Green, greatly encouraged her. The friendship also inspired Mr. Green, most notably in his writing of the world- renowned novel, The Fault in Our Stars, which he dedicated to Esther. The Earl Family founded the non-profit organization, This Star Won't Go Out, to help ease the financial burdens of families caring for children with cancer."

Before I #die I want to... "Thinking about #Death clarifies your #Life". @candychang

“In her New Orleans neighborhood, artist and TED Fellow Candy Chang turned an abandoned house into a giant chalkboard asking a fill-in-the-blank question: ‘Before I die I want to ___.’ Her neighbors' answers — surprising, poignant, funny — became an unexpected mirror for the community. (What's your answer?)”

How We #Grieve: the Messiness of #Mourning and Learning to Live with #Loss. @meghanor

“It’s not a question of getting over it or healing. No; it’s a question of learning to live with this transformation. For the loss is transformative, in good ways and bad, a tangle of change that cannot be threaded into the usual narrative spools. It is too central for that. It’s not an emergence from the cocoon, but a tree growing around an obstruction.”

A #Daughter Pays Homage to Her #Parents With an Intimate Look at #Love and #Loss. @nancyborowick #hpm

"One can only truly understand and appreciate life when faced with one’s own mortality. Nobody wants to talk about death, but it is one of the only things that is certain in life, so an awareness of this finitude allowed my family to take advantage of the time we had left together. “Cancer Family, Ongoing” is the story of family, looking at the experiences of two parents who were in parallel treatment for stage four cancer, side by side. The project looks at love and life in the face of death. It honors my parents’ memory by focusing on their strength and love, both individually and together, and shares the story of their final chapters, which came to a close just 364 days apart from one another."

The "On Coming Alive" Project. #Grief. @lexibehrndt #oncomingalive

"We believe that we are meant to come alive. This doesn’t mean we’ll be without pain. This means that we’ll face the pain, looking it in the eye, feeling it, acknowledging it, never faking it, but embracing life for what it is, a coexistence of the deepest sorrows and the deepest joys. We want to be alive to feel both, because we know that if we hide from the pain, we often also hide from true, deep joy, from freedom, from love and life.

We believe that we come alive as we mend, but we also come alive when we reach up and reach out.

We want to dig down deep and muster the grit within us, reach out our hands, and pull one another to the light, because we don’t believe that we’re meant to always live in the darkness."

It’s worth it: #Love in the face of #Death. @lexibehrndt

"It’s a painful thing losing someone you love. It wrecks you at your very core. It shatters you, as they take a piece of your heart with them as they go. It is earth-shaking and dream-crushing and horrible in every way imaginable.

And it is worth every single second— every beat of their heart, every whispered prayer, every ounce of love given, every time you held their hand, every tear shed, every smile, every kiss, every lullaby and every single time they looked at you with soulful eyes, and told you in their own way, 'I love you, too.' They are worth it all.

Take it from me.

Choose the harder path. Love until you feel like your heart has given all it has, and then give a little more."

#Dying, With Nothing to Say. #hpm

"Months later, I began writing a book about writers’ final days. Talking to my subjects’ families and friends, I realized that while nearly everyone has a fantasy of a “last conversation” with someone they love, very few people actually have it. It is the fantasy of resolving all conflicts, of emotional catharsis, that rarely ever comes to pass, because the habits of reticence or resentment that were there the whole time are still there, because the proximity of death does not transform personalities, or compel us to cut through to the heart of things, however much we want it to…

Part of the problem is that some silences are too wide to narrate. Words, even if the right ones miraculously presented themselves, would not be enough. The confession and forgiveness we want to fill the room do not spring up more naturally in extremis, under duress. It may be the last chance for the dying person to clarify, but clarity doesn’t necessarily come. In this way, death is a lot like life".

Just Days Before Her #Father #Died, She Told Him What He Meant To Her. @NPR @StoryCorps

When he returned from the hospital to find hospice nurses awaiting him at his home, Eva says, he turned to her and said, "I think they think I'm gonna die."

And while he continued to get weaker as he approached the end of his life, Eva says she and her father had not spoken in depth about the prospect of his dying — until the conversation she recorded for StoryCorps.

"Do you think you're dying?" she asked him.

"Everybody dies," he replied.

"Are you afraid?"

"No."

"I wish it wasn't happening right now," she told him. "What are you most proud of, Daddy?"

"My kids."

"Your kids?"

"My family."

She did the interview with her father on a Tuesday afternoon. He died on Thursday night, that same week — on Jan. 29.

Looking Forward. ~ PhotoGrief. #Grief #Bereavement

Photos by Jimmy Edmonds

“These are montages that I make using my son Josh’s image against a background – these are from Mexico while we were filming of the Day of the Dead last year. The original image is of Josh (he died in 2011 aged 22) pretending to be asleep, but it has become one of the main pictures that I remembering him by. What is important for me is that it represents a continuing relationship that I have with him as I re-craft his picture as part of my on going work as a photographer and filmmaker. Photographs we have of our dead love ones are always in the past from when they were still alive – and in that sense they are stuck in history. What we teach on our photography course is that by reworking them and creating new photos we can re-invent the deceased as part of our present lives – its a very cathartic process and does a lot for my own healing – instead of always looking ‘back’ at photos as a way remembering him I am now looking ‘forward’ to the next image I will make with him in it.”

Against #Grieving in Silence. ~Rachel Stephenson

"When loss enters our lives, understanding how to confront it can be difficult. Rachel Stephenson learned a valuable lesson after a difficult loss and shares her wisdom on what it means to grieve meaningfully.

Rachel is an educator, administrator, and writer. For the past 7 years, she has worked for The City University of New York (CUNY) designing and implementing innovative, high-performing programs focused on civic engagement, workforce development, and youth development for a range of inspiring CUNY students. Launching the CUNY Service Corps in 2013 is one of her proudest professional accomplishments. Rachel holds a Master of Fine Arts degree in Nonfiction Writing from Columbia University’s School of the Arts.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community".

Quality of #Death. My Journey with Stage 4 Breast #Cancer.

"We shouldn’t be afraid to talk about what a good quality of death is while balancing a good quality of life. I believe a good quality of life relates more to the application of medical intervention or lack of medical intervention. For me, a good quality of death relates to the amount of grace and love that surrounds me. I am hopeful, it will fuel empowerment and strength as I face my death. I want to find grace and love in myself and the people sharing this journey with me".

Let's Go Home. #PhotoGrief

"In my dreams she is still there and nothing has changed except for me.  The house is still messy, paint is chipping, doorknobs are missing, and there are dishes the sink.  My brother and sister have the TV turned up way too loud in the living room and one room my mother is flawlessly playing the piano, totally undisturbed by the commotion going on around her".

When a child is dying, the hardest talk is worth having. #PedPC

"Conversations about the end of life are hard for most people. But they can be especially sensitive for parents guiding children through terminal illnesses. They often struggle to discuss death because they don’t want to abandon hope; children, too, can be reluctant to broach the subject.

But pediatric specialists say the failure to discuss death — with children who are old enough to understand the concept and who wish to have the conversation — can make it harder for all involved.

A conversation could help children who are brooding silently suffer less as they approach death. It would also ensure parents know more about children’s final wishes".

"Before You Know It Something's Over". The #Death of a #Parent.

"I want to talk to you about how it feels to spend your whole life grieving, to have your ghosts precede your actuality, to feel that nobody you know will ever truly know you because they never knew him. To recycle fourteen years of material like a song that never gets old, because you’re just so frustrated that there’ll never be a new album, even though everybody else is probably sick of the song and likes your new songs so much better. I want to talk to you about how I got free".

Facing life’s end with grace. #EOLC #HPM

"In the end, the more people are ready to have the talk, the more likely it is that the medical industry will offer care that accounts for the vast, nuanced, and fluid decision points facing patients who are short on time.

Dying, after all, is complicated, hard business, and dying well is more complicated, and harder".

In ‘When Breath Becomes Air,’ Dr. Paul Kalanithi Confronts an Early Death.

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"Part of this book’s tremendous impact comes from the obvious fact that its author was such a brilliant polymath. And part comes from the way he conveys what happened to him — passionately working and striving, deferring gratification, waiting to live, learning to die — so well. None of it is maudlin. Nothing is exaggerated. As he wrote to a friend: 'It’s just tragic enough and just imaginable enough.' And just important enough to be unmissable".