death

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When My Mother Died: A Story Of ‘Incomplete Mourning’

By Sarah Baker

I was 8 years old and the sky was black the day my mother died.

That morning, after a five-year struggle with a brain tumor, she’d passed away at Bethesda Naval Hospital, where she had been admitted a couple of days earlier. I hadn’t seen her since.

Grieving wasn’t an option in our house. We were a “chin up, shoulders back” group led by Dad, a rising star in the Navy. At my mother’s graveside in Arlington National Cemetery, my 10-year-old brother and I stood like little replicas of John F. Kennedy Jr. 12 years earlier when he saluted his father’s coffin. There were no tears, no signs of weakness. Long periods of mourning or sadness were not in our family culture — our grief was put on hold. There were bags to pack, and new ports of call. I was Soldiering On.

The Hardest Thing

According to the advocacy group SLAP’D (Surviving Life After a Parent Dies), 1 in 9 Americans loses a parent before age 20. Of those, nearly half said it was difficult to talk about their grief and only 7 percent said a guidance counselor helped. Six out of 10 adults interviewed, who lost a parent when they were children, said it’s the hardest thing they’ve had to deal with.

Sarah Baker at age 6, two years before her mother died (Courtesy)

Sarah Baker at age 6, two years before her mother died (Courtesy)

For us, the coping mechanism of Soldiering On worked splendidly for years, even decades. I survived all of the moves due to Dad’s deployments, even thrived, people might say. I went to college, graduate school, found great jobs, married a wonderful man, and had two beautiful children. All seemed well, at least on the surface.

But years of anxiety and disassociation gripped me. Recently, though, I felt all that emotional baggage was not sustainable. My external world appeared blissful (and it was!) but my internal world reeled. I had periods of blankness, inability to focus, sleeplessness, feelings of isolation when I was surrounded by loving people; despair, longing for something else, numbness, repeating negative loops in my mind, and sensations of being half dead. These feelings came in waves — days of it followed by lightness and connection. The longest darkness lasted three months — the world drained of its colors and none of my usual “reset,” or coping, tools seemed to work.

Necessary Grief

Importantly, coping is not grieving. “There is a kind of sanity to grief,” says Kay Jamison, a professor of psychiatry at the Johns Hopkins School of Medicine and author of “An Unquiet Mind.” “It provides a path — albeit a broken one — by which those who grieve can find their way. Grief is not a disease; it is a necessity.”

Funerals and other rituals bring people together and defend against loneliness. But if the grief lingers too long, is too severe, or unprocessed, it might begin to resemble depression. It’s a fine line indeed.

I now know I had never fully experienced the pain and sorrow of my grief. Continue reading

Is There A Lesson About Treadmills In Sandberg Spouse Death? Yes: Keep Exercising

(MilitaryHealth/Flickr)

(MilitaryHealth/Flickr)

In this 2013 file photo, Sheryl Sandberg, COO of Facebook, and her husband David Goldberg, CEO of SurveyMonkey, walk to a conference in Sun Valley, Idaho. (Rick Bowmer/AP)

In this 2013 file photo, Sheryl Sandberg, COO of Facebook, and her husband David Goldberg, CEO of SurveyMonkey, walk to a conference in Sun Valley, Idaho. (Rick Bowmer/AP)

The subject line of an email I got last night didn’t mince words: “Exercise can kill you.”

Not exactly the conclusion I’d draw from the tragic death of Sheryl Sandberg’s husband, Dave Goldberg, who is reported to have died of head trauma and blood loss after falling off a treadmill while on vacation in Mexico.

Not surprisingly, the flukish, apparently accidental death of a high-profile spouse led to predictable follow-up stories on the dangers of exercising on treadmills.

From Quartz, under the headline, “After Dave Goldberg’s tragic death, it’s worth a reminder: Treadmills are dangerous:”

Treadmills are notorious for causing accidents—occasionally fatal ones. The machines’ powerful motors and fast-moving belts can punish any momentary loss of balance with bruises, sprains, broken bones, friction burns, or worse. Distractions like watching TV or reading while running increase the likelihood of an injury.

The Washington Post reports on the “risks of treadmills in the era of smart phones:”

But his freakish accident actually isn’t that rare. Every year, tens of thousands of Americans are injured on treadmills. Thousands are taken to the emergency room. A handful die.

Data suggests that the problem is getting worse. As high-tech, high-powered treadmills proliferate, so, too, do the digital distractions that make the machines even more dangerous…

“Almost 460,000 people were sent to the hospital in 2012 for injuries related to exercise equipment,” according to USA Today. “The vast majority—nearly 428,000 were treated and released for their injuries—but about 32,000 were hospitalized or were dead on arrival.”

Treadmills account for the majority of such exercise equipment injuries, Graves told The Washington Post in a phone interview. In a study of 1,782 injury reports from 2007-2011, she found that “treadmill machines comprise 66% of injuries, but constitute approximately only 1/4 the market share of such equipment.

But wait, a reality check, please. Stuff happens. Unpredictable, tragic, life-altering stuff. And we, the survivors, need to keep steady and continue to care for ourselves and for those we love. And that includes exercise.

I asked Dr. Eddie Phillips, director of the Institute of Lifestyle Medicine and an assistant professor of Physical Medicine and Rehabilitation at Harvard Medical School, for his take, and he offered this perspective:

Despite the tragic and paradoxical death of a high profile individual exercising on a treadmill to improve his health we must not lose site of the overwhelming evidence of the benefits of increased physical activity for everyone. Treadmill accidents are rare compared to the pandemic of preventable disease and death from physical inactivity in the majority of the population. Avoiding exercise and remaining sedentary ensures universal increased risks of diseases like diabetes and heart disease as well as premature death and increased health care costs. Continue reading

Beyond Carb-Cutting: Resolutions After A Trauma — Sleep, Play, Love

(katiebordner/Flickr)

(katiebordner/Flickr)

By Rachel Zimmerman

A friend, trying to cheer me up over the holidays, suggested I find comfort in this fact: “The worst year of your life is coming to an end.”

In 2014 I became a widow, and my two young children lost their father. Needless to say our perspective and priorities have shifted radically.

Last year at this time, my New Year’s resolutions revolved around carbs, and eating fewer of them. This year, carbs are the least of my worries. My resolutions for 2015 are all about trying to let go of any notion of perfection and seek what my mother calls “crumbs of pleasure” — connection, peace and actual joy on the heels of a life-altering tragedy that could easily have pushed me into bed (with lots of comforting carbs) for a long time.

As a mom I know with stage 4 cancer put it, when your world is shaken to its core, your goals shift from things you want to “do” —  spend more time exercising, learn Italian, make your own clothes — to ways you want to “be,” knowing that your life can shift in an instant.

So, with that in mind, here are my five, research-backed, heal-the-trauma resolutions for 2015:

A Restful Sleep

Yes, at the top of my list of lofty life goals is a very pedestrian one: sleep. Lack of sleep can devastate a person’s mental health and without consistent rest, the line between emotional stability and craziness can be slim. (See postpartum depression, for one example.) In my family at least, to ward off depression and anxiety, we need good sleep and lots of it; more Arianna Huffington and less Bill Clinton.

Play, Sing, Dance

The beautiful thing about children is that despite tragedy and loss, they remain kids; they are compelled to play, climb, run and be active. Resilience, as the literature says. In their grief, they can still cartwheel on the beach, play tag or touch football in the park. Shortly after my husband died, I tried very hard to play the games my kids liked, which often felt like that scene in the “Sound of Music” where the baroness pretends to enjoy a game of catch with the children. Soon I learned to broaden my definition of play — really anything, physical, or not — that serves no other purpose other than to elicit pure joy. Continue reading

After A Death, Should We Get A Dog? Brain Study Signals ‘Yes’

(Greg Westfall/Flickr)

(Greg Westfall/Flickr)

Let’s be clear: I need a dog like a hole in the head.

I’m a recently widowed working mother with a small house, no trust fund and two extremely active young daughters: if it’s Thursday, it must be rock-climbing, piano and Taekwondo before track practice across town. You get the picture.

Still, lately I’ve been thinking the unthinkable: a Maltipoo, Goldendoodle or some other ridiculously named, hypoallergenic, low-maintenance (does that exist?), cute-as hell puppy for my daughters — and for me — to love.

I know full well this is a risky prospect. “There is no rational reason to get a dog,” says my Basset Hound-owner friend. “They are work, expense and add to the list of beings in your home who have needs to be attended to. It is sort of like deciding to have a kid — no rational reason to do that either but big pay off on love, general hilarity and a constant reminder of the joy in everyday small things.” Or, as another friend put it: “What have dogs done for me? They make me more human.”

“What have dogs done for me? They make me more human.”

– A dog-loving friend

It’s that truly profound, but tricky to pinpoint, human-pet bond that drives Lori Palley’s research. She’s assistant director of veterinary services at Massachusetts General Hospital’s Center for Comparative Medicine and has recently become fascinated by why people’s relationships with their dogs can be so very significant.

Her latest research, published in the medical journal PLOS ONE, involved scanning the brains of mothers while they were looking at images of their own children and their dogs. Surprise: similar areas of the brain were activated — regions involved in emotion and reward — whether it was the kids or dogs on view.

It was a small study using fMRI: only 14 mothers (dog owners) who had at least one young child. And in case you jump to some conclusion about moms loving their dogs as much as, or more than, their kids, wait: the research also found that in other areas of the brain involved in attachment and bonding, the mother’s brains were more activated when viewing their children.

In a small study, mothers viewed images of their own children and their dog. Similar areas of the brain involved in emotion and reward were activated. Source: PLOS ONE: "Brain Activation when Mothers View Their Own Child and Dog: An fMRI Study

In a small study, mothers viewed images of their own children and their dog. Similar areas of the brain involved in emotion and reward were activated. (Source: PLOS ONE: “Brain Activation when Mothers View Their Own Child and Dog: An fMRI Study”)

Continue reading

The Game Of Death: You Win By Talking About Yours The Best

Game night in Medford, Mass., for players of “My Gift of Grace,” a new game meant to facilitate end-of-life conversations. (Gabrielle Emanuel/WBUR)

By Gabrielle Emanuel

It’s game night on the top floor of a bank building in Medford, Mass., and 25 people have divvied themselves up around the circular tables. Four women, none of whom know each other well, are seated near the snacks busily discussing their future burials.

Katie Wallace, a native of nearby Somerville, is confident she wants to be cremated. But it’s a bit more complicated for her. The urns are accumulating. “I have a room in my house where I have the ashes of six different people,” she says. “So I have to figure out what to do with all of those people.”

As a lavender dusk settles outside the floor-to-ceiling windows, the women chuckle about whether Wallace should pass this “inheritance” on to a younger relative or, perhaps, invest in a columbarium.

This isn’t just small talk. It’s part of the game. These woman and men, all of whom are older, have gathered to play a card game — one with chips, a deck of cards, and a winner and losers. But this isn’t poker or blackjack.

Question 15: What music do you want to be listening to on your last day alive?

The game, called My Gift of Grace, aims to facilitate conversations about the end of life. It’s part of a growing trend: efforts aimed at encouraging talk of death well before it is imminent. From The Conversation Project to Honoring Choices and another card game called Go Wish, all seek to find ways around the usual distaste for facing death in advance, so that people can better control the care they receive at the end.

“I think we are on the early cusp of what I hope will become a groundswell of change,” said Dr. Lachlan Forrow, director of the Ethics and Palliative Care Programs at Boston’s Beth Israel Deaconess Medical Center, in a phone interview.

The idea for this game started when The Action Mill, a Philadelphia-based design firm, was interviewing a hospice nurse, remembers Nick Jehlen, who ultimately led the game’s design team. Continue reading

Aid-In-Dying Loophole: Advocates Want You To Know You Can Stop Eating And Drinking

Lee J. Haywood/flickr

Lee J. Haywood/flickr

By Nell Lake
Guest contributor

One sunny day in the spring of 2012, Kathleen Klein sat in a car by the California coastline with her 84-year-old mother, Jackie Wilton. The two women had been quietly gazing at the view, watching seagulls along the shore. “I’m ready to go,” Klein recalls her mother saying. “Not go home…Go.”

Klein didn’t need the clarification. Her mother had been speaking of wanting to die for years, ever since Wilton was diagnosed with an unspecified dementia a few years before. Wilton’s memory had become significantly impaired. But even before her diagnosis, Wilton was clear: She wanted to die before she became severely incapacitated.

Not long after the conversation by the water, Wilton asked Klein explicitly for help in ending her life. In interviews and a recent blog post, Klein remembers wanting to help her mother, but of being unwilling act illegally.

Even if Wilton had lived in one of the five states with an aid-in-dying law, she would not have qualified for such aid from a physician. That would have required a doctor’s determining that she would likely die within six months. Given the usual course of chronic, progressive dementia, Wilton would likely have lived much longer.

So Wilton needed another option for ending her life. Soon Klein heard a radio interview about “the possibility of helping someone die by letting them stop eating and drinking,” she wrote. “The way I understood it, it was the only legal form of assisted suicide.”

Klein mentioned the scenario to her mother. Wilton said she would think about it. A few days later, Wilton again mentioned wanting to die. “I asked her if she remembered the idea I had run by her. She didn’t, so I told her again. I suggested we give it a try (a ‘dry run,’ we called it) for a day and see if she wanted to continue.”

Wilton began the “dry run” on April 28, 2012.

No Food, No Drink

Most often referred to as VSED — voluntary stopping of eating and drinking — the practice of giving up food and drink in order to hasten one’s death is being increasingly publicized by aid-in-dying advocates as a legal alternative to physician-assisted suicide.

VSED is legal everywhere, even in states without aid-in-dying laws, and in cases in which a person, like Wilton, would not qualify for assistance with dying even in those states.  Compassion and Choices, a leading “death with dignity” organization, is beginning to more actively promote VSED as an option because “it’s something that patients can openly pursue, in open dialogue with their physicians, with the support of hospice,” says Barbara Coombs Lee, the group’s director. “We do want to make it more public. We want to make it more visible because it upholds the truth that ultimately patients should be and are in charge. That’s kind of a consciousness-raising task. Continue reading

Study Finds Fivefold Increase In Alzheimer’s Deaths: Why It Matters

JAQ'S PhotoStorage/flickr

JAQ’S PhotoStorage/flickr

By Nell Lake
Guest contributor

Consider a hypothetical 70-year-old woman; she could be your mother, your sister, your wife. Call her Margaret. She’s becoming ever-more forgetful; one day she gets lost on her way home from the grocery store. A neurologist diagnoses Alzheimer’s.

Over the next five years, Margaret’s thinking continues to decline. She speaks less, confuses words, falls often. She needs a wheelchair, becomes incontinent. No longer able to manage her care, you move her to a nursing home. A year later, the disease has spread to the part of Margaret’s brain that controls swallowing; she has difficulty eating. Because of this she “aspirates” her food — bits of it enter her lungs, and Margaret develops pneumonia. Within weeks, her lungs stop working, and Margaret dies.

Margaret’s story is a difficult one, but common. It also illustrates a conundrum: Did Margaret die of pneumonia, or Alzheimer’s?

On some level, the answer doesn’t matter much: death is death. But as a matter of public health, the answer is deeply important: funding for medical research, new treatments and ultimately, someday, a cure, tends to flow toward the most widespread and deadly diseases. That’s why a new study out this week is getting so much attention; should its findings become widely accepted, they could substantially increase the pace and effectiveness of Alzheimer’s research in the U.S.

Massive Underreporting

The study, published Wednesday in the journal Neurology, confirmed what clinicians and researchers have long assumed: Alzheimer’s deaths have been greatly underreported.

The research found that 500,000 people die each year from Alzheimer’s — more than five times the number most recently reported by the CDC. That makes Alzheimer’s the third leading cause of death in the United States, after heart disease and cancer. Currently the CDC ranks Alzheimer’s sixth as a cause of mortality, with 84,000 deaths reported on death certificates.

The new report’s fuller accounting of Alzheimer’s deaths reinforces a basic but frequently overlooked fact: The illness is entirely fatal. A progressive brain disease that gradually impairs memory, reasoning and personality, Alzheimer’s eventually damages all brain functions, so that even walking, eating and breathing become impossible. Alzheimer’s kills because the brain is no longer able to keep the body alive. Continue reading

DIY Death: Natural, At-Home Funerals And Their Boomer Appeal

WELLFLEET, Mass. — When 20-month-old Adelaida Kay Van Meter died of a rare genetic disease last winter, her father, Murro, gently carried her body out of the house to his wood shop in the pines near Gull Pond. He placed her in a small cedar box and surrounded her with ice packs. For three days, the little girl’s grieving parents were able to visit her and kiss her and hug her. Then, on the third day, after the medical examiner came to sign the last bit of paperwork, Van Meter and his wife, Sophia Fox, said good-bye to their baby, screwed the lid on the box and drove to a Plymouth, Mass. crematorium, where they watched the little coffin enter the furnace.

“We took care of Adelaida when she was an infant, we took care of her when she was healthy, we advocated for her in the hospital, we took care of her when she was sick,” her father said. “Why wouldn’t we take care of her when she was dead?” Sophia Fox added: “There was no way I was going to hand her over to some stranger at a funeral parlor where she’d be put in a refrigerator with a bunch of other dead bodies. This way was so much more natural. We saw the life leave her body and we were better able to let go.”

Death remains a topic that many of us would rather avoid. And when it comes to the actual nuts and bolts of caring for the dead, most of us tend to think it’s best — and furthermore, required by law — to let professional funeral arrangers handle the arrangements.

Well, it turns out that in most states it’s perfectly legal to care for your own dead. And, with new momentum to shatter longstanding taboos and stop tip-toeing around death — from “death with dignity” measures sweeping the country to projects promoting kitchen table “conversations” about our deepest end-of-life wishes — a re-energized DIY death movement is emerging.

This “personal funeral” or “home death care” movement involves reclaiming various aspects of death: for instance, keeping the dead body at home for some time rather than having it whisked it away; rejecting embalming and other environmentally questionable measures to prettify the dead; personally transporting a loved one’s corpse to a cemetery; and even, in some cases, home burials. Families are learning to navigate these delicate tasks with help from a growing cadre of “death midwives” “doulas” or “home death guides.”

When Adelaida Van Meter died last winter, her parents decided to keep her body at home for several days to say good-bye.

(Courtesy Murro Van Meter)

The DIY death movement is loosely knit, and motivations vary, ranging from environmental concerns to religious or financial considerations. (Traditional funerals can cost around $10,000 or more; when you do-it-yourself, the cost can be reduced into the hundreds, experts says.) Each case is fiercely personal — there’s no playbook — but they all share a very intimate sense that death should unfold as a family matter, not as a moment to relinquish loved ones to a paid stranger or parlor.

This Is Legal?

The highly personal nature of home funerals appealed to Janet Baczuk, 58, of Sandwich, Mass. So, when her 93-year-old father, Stephen, died in September, 2011, she said, “I thought, I’d like to do that for my dad.” “It’s more humane, more natural…and more environmentally sound.”

Baczuk and her sister washed their father’s dead body using essential oils, and got a permit to drive the corpse to the cemetery in their (covered) pickup truck. A World War II veteran, Stephen Baczuk was buried at Massachusetts National Cemetery in Bourne, where officials allowed his simple pine and cherry casket to be placed directly on the ground, covered by an inverted concrete vault with no lid, “like a butter dish,” Baczuk said. When her mother died back in 2006, Baczuk said, she had no inkling that home funerals were an option — but wishes she did. “I didn’t know it could be done,” she said. “I think a lot of lay people don’t know this is legal or possible.”

She’s right.

“When it comes to death, it doesn’t matter where you are on the scale of education or socioeconomics, many people are shocked to find that it’s legal to care for your own dead at home,” says Josh Slocum, Executive Director of the Funeral Consumers Alliance, a Burlington, Vermont, nonprofit that works on all aspects of funeral education, from helping consumers reduce costs to advocating on DIY methods. “And I think this speaks to how distant death has become for us in just over a century. In the late 1800s, even turn of the century, caring for the dead was as prosaic and ordinary as taking care of the children or milking the farm animals.”

Slocum offers this analogy: If a woman wants to run a restaurant, she needs approval from the health department and officials, of course, would be permitted to inspect her kitchen. But the health department would have no jurisdiction over the same woman’s own kitchen at home. “They cannot come in and tell her that her refrigerator is subpar, and they have no authority to tell her she is not allowed to cook dinner for her kids. They can’t compel her to order dinner from a commercial, licensed restaurant,” Slocum says. “The same holds with state funeral regulatory boards. Their job is to ensure public welfare and protect paying consumers. Bizarrely, however, many think their jurisdiction extends to telling families they must pay an unwanted third party funeral home to do something the family could do for themselves.”

Kyle Gamboa, 1995-2013 (Courtesy Kymberlyrenee Gamboa)

Kyle Gamboa, 1995-2013 (Courtesy Kymberlyrenee Gamboa)

What characterizes the DIY death experience is that it’s so very personal.  Consider these vastly different snapshots:

• In northern California, Kimberlyrenee Gamboa’s son Kyle committed suicide by jumping off the Golden Gate Bridge in September, three weeks into his senior year in high school. A seemingly happy 18-year-old with lots of friends and into competitive lasertag, Kyle’s death was such a shock, his mother said, she doesn’t know how she’d have managed it through a typical funeral. Instead, with help from her church and and home death guide, Heidi Boucher, Kyle’s body was returned to the family home one day after his death. Boucher washed Kyle and helped arrange the body on dry ice changed every 24 hours; she gathered information to fill out Kyle’s death certificate and managed all coordination with the mortuary. For three full days, Kyle’s body lay in the family living room in an open casket, not embalmed. During that time, day and night, surrounded by pictures and candles and flowers, all of his friends and family could say good-bye and remember his short life. For Kyle’s mother, that time was critical to her healing. Continue reading

Tip-Toeing Toward Conversations About Death

Having a conversation about the way you want to die can be uncomfortable. But that means many of us aren’t ready when our parents, spouse or children face a startling diagnosis or have a tragic accident. And how about for yourself? Do you have a health proxy, someone who knows what to tell doctors if you are unconscious?

deathA state law passed earlier this year urges more of us to make preparations for these wrenching experiences by requiring that doctors offer information on end-of-life care to “appropriate” patients. The new law does not require counseling or signatures on forms, but the hope is that when a doctor hands a patient a pamphlet, it may start a conversation.

“Sixty-seven percent of people want to die at home and only 24 percent did,” said Public Health Commissioner Cheryl Bartlett, citing a survey of Massachusetts residents. “If we have these conversations more, people will be more comfortable helping to make these choices come true.”

The Department of Public Health has just released draft rules for the law. It defines an “appropriate” patient as someone who has a terminal illness that is expected to cause death within six months and who would benefit from hospice and palliative care. But some doctors are already taking a much broader view.

“Our goal is that all patients have the opportunity to at least designate a surrogate,” said Eliza Shulman, chief of palliative care at Harvard Vanguard Medical Associates. “And that all of our most vulnerable patients have their wishes very clearly documented so that they are able to get care that’s aligned with their goals and practices.”

Continue reading

The Death Conversation: Easier Said Than Done

It’s one thing to know deep down you really should talk about death far before it happens; but it’s a very different thing to actually converse about the details of dying with the people you love.

That “disconnect” — between what you want and what you do — is the key finding from a new survey by the folks who launched The Conversation Project, a national effort to get people talking about the nitty gritty details about end-of-life care.

The survey found that 90 percent of Americans know they should have the “death conversation” but only 30 percent have done it. (One person who has done it is CommonHealth co-host Carey Goldberg; you can listen to her conversation with her 86-year-old father here.)

Here’s what Ellen Goodman, founder of The Conversation Project, said via email:

“I’m pretty amazed that 90 percent of Americans agree on anything! Ten years ago, we didn’t yet realize that having conversations about the care we want at the end of life was ‘important.’ Now we do. That’s tremendous progress.”

“At the same time, the survey shows that only 30 percent of Americans have actually had these conversations about end of life. So there’s a big gap between what we know and what we do. We are still reticent to start these conversations. We think that it’s too soon, and we wait for the other person to start talking. So our goal is to help people to close the gap. If you’re reluctant, you aren’t alone. If you know you should talk to the people you love before it’s too late, you are in the 90 percent! The Conversation Project has the stories and the tools that can really help.”

Why is it so hard to have these discussions? Here’s more insight from The Conversation Project (which was launched in collaboration with the Cambridge-based Institute for Healthcare Improvement) news release:

There are a host of reasons why Americans haven’t discussed their own wishes. Top reasons from the survey include:

–It’s not something they need to worry about at this point in life (29%), they aren’t sick yet (23%) Continue reading