Tuesday, January 30, 2018

The Dead Moms Club: A Memoir about Death, Grief, and Surviving the Mother of All Losses: Kate Spencer: 9781580056878: Amazon.com: Books

Kate Spencer lost her mom to cancer when she was 27. In The Dead Moms Club, she walks readers through her experience of stumbling through grief and loss, and helps them to get through it, too. This isn't a weepy, sentimental story, but rather a frank, up-front look at what it means to go through gruesome grief and come out on the other side.

An empathetic read, The Dead Moms Club covers how losing her mother changed nearly everything in her life: both men and women readers who have lost parents or experienced grief of this magnitude will be comforted and consoled. Spencer even concludes each chapter with a cheeky but useful tip for readers (like the "It's None of Your Business Card" to copy and hand out to nosy strangers asking about your passed loved one). 

The Dead Moms Club: A Memoir about Death, Grief, and Surviving the Mother of All Losses: Kate Spencer: 9781580056878: Amazon.com: Books:


Friday, January 26, 2018

What to Say When You Meet the Angel of Death at a Party - The New York Times

Kate Bowler writes: "I am keeping vigil in the place of almost death. I stand in the in-between where everyone must pass, but so few can remain."  She describes the well-intentioned but misguided and hurtful comments and suggestions from friends and strangers.

Bowler says that meaningless pieties from those who feel that describing their own losses or those of someone they know shows that they understand. "But I remind myself to pay attention because some people give you their heartbreak like a gift."
What does the suffering person really want? How can you navigate the waters left churning in the wake of tragedy? I find that the people least likely to know the answer to these questions can be lumped into three categories: minimizers, teachers and solvers.
No one can understand. No one can fix it. All she wants is for people to help her stay in the moment and remind her that she is loved.
What to Say When You Meet the Angel of Death at a Party - The New York Times

The Widows Of Zimbabwe Find Comfort In Rituals And Community Support : Goats and Soda : NPR

An innovative approach to community support for those in grief:

"When a grieving person visits the Friendship Bench — which is quite literally a park bench — they speak with trained lay health workers employed by the city's health authorities, Chibanda says. "In 2016, more than 30,000 people came to the Friendship Bench to seek services, and about 20 percent of these people had lost their loved ones," he says."


The Widows Of Zimbabwe Find Comfort In Rituals And Community Support : Goats and Soda : NPR:

One Day Your Mind May Fade. At Least You’ll Have a Plan. - The New York Times

The standard advanced directive is not enough to cover the very challenges those with cognitive impairment will be less equipped to make at the time.

Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,” Dr. Gaster told me. “At what point, if ever, would they not want medical interventions to keep them alive longer? A lot of people have strong opinions about this, but it’s hard to figure out how to let them express them as the disease progresses.” One of those with strong opinions, it happens, was Ms. Vandervelde, 71, an abstract painter in Seattle. Her father had died of dementia years before, in a nursing home after her mother could no longer care for him at home. Ms. Vandervelde had also spent time with dementia patients as a hospice volunteer. Further, caring for her mother in her final year, Ms. Vandervelde had seen how family conflicts could flare over medical decisions. “I was not going to leave that choice to my children if I could spare them that,” she said.


One Day Your Mind May Fade. At Least You’ll Have a Plan. - The New York Times

It’s Not the Death, It’s the Dying: Moral Distress in Palliative Care ~ Pallimed

Moral distress – the discomfort, angst, and frustration related to situations in which we think we know the “right thing” to do, but cannot due to the situation – is endemic to palliative care and hospice work.

Some examples are:
  • Aggressive chemotherapy for a dying cancer patient with days to live. 
  • Dumping the truth on a patient overwhelmed and alone. 
  • Following the treatment wishes of a family that which are incongruent with the patient who can’t speak for themselves. 
  • Prolonging dying because a family says they are waiting for a miracle.
...
The “crescendo effect” of moral distress is real and dangerous. It can linger for months and years. We all have a difficult case burned into our minds. The result of moral distress, especially if we are exposed to it frequently, causes emotional exhaustion, unrealistic expectations, close-mindedness, and boundary blurring between the suffering of the patient and the family and our own.

It’s Not the Death, It’s the Dying: Moral Distress in Palliative Care ~ Pallimed

I watched my son die from cancer. Here are the lessons I have learned | Life and style | The Guardian

My biggest consolation in grief and my greatest achievement in life is to have fulfilled the wishes of my child – emotional, physical, spiritual – as he approached death during the last three months after his terminal diagnosis. I do not have guilt or questions and I know full well how lucky I am to be able to say that. I have met families who did not have this and they tell me they will never recover and, knowing what DD’s good death means to me, I believe them. You might ask if my son would say the same thing about his death, were he still alive. We had many honest conversations about what was happening to him during his treatments and he knew and had accepted he was going to die; he was at the meeting when the scan showed the cancer was clearly incurable. I can only answer by describing what he achieved in those last three months and his last lucid words: “I love it here.”


I watched my son die from cancer. Here are the lessons I have learned | Life and style | The Guardian

Tuesday, January 16, 2018

Why the AP Stylebook’s rules on how to talk about suicide don’t work for me.

Torie Bosch's essay on the words she uses to talk about her parents' suicide are important, and have some insights to help us understand everyone who deals with grief and loss. 
 “Commit suicide” is clean and clinical. There are no cartoon characters or inappropriate emotional responses. It is clear, matter of fact, free of emotional valence. It neither condemns nor romanticizes. It describes what happened, and, importantly, acknowledges the autonomy of the person who did it without condoning the action—because my parents each made a decision. It’s a decision that I loathe, a decision I spent years of my life pleading with my mother not to make, one made under the influence of a pernicious mental illness that she worked incredibly hard to live with—but it was still her action.

Why the AP Stylebook’s rules on how to talk about suicide don’t work for me.

Sunday, January 7, 2018

Laurie Kilmartin’s New Book ‘Dead People Suck’

Laurie Kilmartin's new book is Dead People Suck: A Guide for Survivors of the Newly Departed, inspired by her experience grieving the death of her father in 2014.
Death is not for the faint of heart, and sometimes the best way to cope is through humor. Kilmartin made headlines by live-tweeting her father’s time in hospice and her grieving process after he passed, and channeled her experience into a comedy special, 45 Jokes About My Dead Dad. Dead People Suck is her hilarious guide to surviving (sometimes) death, dying, and grief without losing your mind. With chapters like “Are You An Old Man With Daughters? Please Shred Your Porn,” “If Cancer was an STD, It Would Be Cured By Now,” and “Unsubscribing Your Dead Parent from Tea Party Emails,” Laurie Kilmartin guides you through some of life’s most complicated moments with equal parts heart and sarcasm.

This Was Not the Good Death We Were Promised - The New York Times

This family did everything right.  They had honest conversations and planned for palliative care to make the dying man as comfortable as possible.  But it turned out that the promises of care were contingent on staff availability.

"[A]t the very end, confronted by a sudden deterioration in my father’s condition, hospice did not fulfill its promise to my family — not for lack of good intentions but for lack of staff and foresight....At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels....Kaiser Health News discovered there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80 percent of people reported “getting timely care” from hospice providers, and only 75 percent reported “getting help for symptoms."

This Was Not the Good Death We Were Promised - The New York Times

The Greenest Things to Do With Your Body After You Die | The Amateur's Guide To Death & Dying

"The green burial movement is championing sustainability and a more natural approach to death. Forgoing the embalming process, they advocate biodegradable coffins made of untreated wood, cardboard, or wicker. Shallower graves expose the body to the layers of soil most richly populated with decomposing organisms. Burials take place in protected, natural burial grounds outside urban areas, with graves marked by GPS or simple carved stones. It’s a move back to the more ancient burial traditions practiced until the Civil War (and still favored by Jewish and Muslim communities)...Green burial is all about reconnecting death and nature, explained Cunningham. She pushed up the sleeves of her earth-colored cardigan and flipped through a catalog of green-burial products. Besides woven caskets, there are soluble salt urns and seed-filled scattering tubes. There’s even the option to transform the remains of a loved one into a hand-crafted piece of amber jewelry. Products can be adorned with photographs, drawings or hand-written messages. It’s less rigid and more personal, [Amy] Cunningham said. Taking part in the burial process is also encouraged. Families can dig or fill graves and plant memorial trees. “Having these kinds of alternative burials helps families feel they are doing something innovative and creative,” explained Cunningham, who had just returned from the latest green burial convention in Tampa. “It’s an experience, it’s not the conventional funeral and families look back on it as something uplifting.”"


The Greenest Things to Do With Your Body After You Die | The Amateur's Guide To Death & Dying

Holly Butcher, dying of cancer, wrote an open letter

"Get up early sometimes and listen to the birds while you watch the beautiful colours the sun makes as it rises. Listen to music.. really listen. Music is therapy. Old is best. Cuddle your dog. Far out, I will miss that. Talk to your friends. Put down your phone. Are they doing okay? Travel if it’s your desire, don’t if it’s not. Work to live, don’t live to work. Seriously, do what makes your heart feel happy. Eat the cake. Zero guilt. Say no to things you really don’t want to do. Don’t feel pressured to do what other people might think is a fulfilling life.. you might want a mediocre life and that is so okay. Tell your loved ones you love them every time you get the chance and love them with everything you have."

Holly Butcher dying cancer open letter:

Thursday, January 4, 2018

This Cat Sensed Death. What if Computers Could, Too? - The New York Times

Of the many small humiliations heaped on a young oncologist in his final year of fellowship, perhaps this one carried the oddest bite: A 2-year-old black-and-white cat named Oscar was apparently better than most doctors at predicting when a terminally ill patient was about to die. The story appeared, astonishingly, in The New England Journal of Medicine in the summer of 2007. Adopted as a kitten by the medical staff, Oscar reigned over one floor of the Steere House nursing home in Rhode Island. When the cat would sniff the air, crane his neck and curl up next to a man or woman, it was a sure sign of impending demise. The doctors would call the families to come in for their last visit. Over the course of several years, the cat had curled up next to 50 patients. Every one of them died shortly thereafter. No one knows how the cat acquired his formidable death-sniffing skills. Perhaps Oscar’s nose learned to detect some unique whiff of death — chemicals released by dying cells, say. Perhaps there were other inscrutable signs. I didn’t quite believe it at first, but Oscar’s acumen was corroborated by other physicians who witnessed the prophetic cat in action. As the author of the article wrote: “No one dies on the third floor unless Oscar pays a visit and stays awhile.”

This Cat Sensed Death. What if Computers Could, Too? - The New York Times:


Judy MacDonald Johnston: Prepare for a good end of life

Life and Death in the ICU: An Interview with Dr. Jessica Zitter

Extremis | Official Trailer [HD] | Netflix