Pokin Around: Dr. Bob Saylor looks at death through eyes of a patient

By Steve Pokin

Dr. Bob Saylor sits slumped in a wheelchair waiting for me outside Mercy’s Cancer Center.

His wife of 46 years, Marcie, stands behind the chair. She seems to be slumping, too, as if punched in the gut.

Dr. Bob Saylor
Retired doctor Robert Saylor poses for a portrait at the Mercy Cancer Center. He headed the hospital’s ethics program. He now has brain cancer and faces questions of his own life and death.

Bob, 64, has brain cancer. He is dying.

The plan was to interview him for about 90 minutes as he received chemotherapy. But he and Marcie have just been told his white-blood-cell count is too low. His fragile body can not handle the rigors of chemotherapy.

I ask if we can still do the interview. His voice is a whisper — sure. I wheel him into the small chapel in the cancer center.

I want to establish a starting point for our conversation. I don’t want to presume. So I ask him: Do you believe you are at the end of your life?

“Yes, I do. Do I see myself dying tonight? No. Would I be surprised if I did? No, I would not be.”

Bob is a nephrologist — a kidney specialist. But about10 years ago he went back to school for a master’s degree in bioethics. For the past several years he has been the director of ethics for Mercy in Springfield.

During this time he has worked with doctors, nurses, patients and their families. He has explored the big questions of life and death and tried to determine — case by case — when medical intervention should cease, when you simply let things be.

“Just because we can intervene as doctors does not always mean we should,” he says.

Now, as cancer takes hold of him, he is the patient. He is the one who must choose how to live his remaining days.

The deadliest cancer

In November, he was betrayed by his left hand. It stopped working. He thought it was carpal tunnel syndrome.

It wasn’t. It was a glioblastoma multiforme brain tumor the size of a small fist. Sadly, the fist has opened and spread its malignant fingers.

Weeks later, he was in Houston being prepped for brain surgery at the University of Texas M.D. Anderson Cancer Center.

The nurse practitioner looked at him and said: “If I were you, I would go home and get my affairs in order.”

In the chapel, he tells me, “That’s not how we do things at Mercy.”

The surgeon removed 92 to 95 percent of the tumor, which is good, Saylor says. He would undergo chemo and radiation to try to get the rest.

Once back in Springfield, Saylor added a new, different treatment — a supplement to the chemo and radiation.

It was a non-invasive procedure called Optune. Electrodes were placed on his scalp. They sent wave-like electrical fields into his brain to prevent the cancer cells from multiplying.

The initial results offered hope. Mercy issued a press release. The News-Leader ran a story — “Mercy doc tries new tumor-zapping treatment for brain cancer.”

Then the tumor came back.

“We can’t say it failed,” Bob says. “It is not doing what we thought it was going to do.”

“Well, I guess you’d say …

What can make me feel this way? My girl. Talkin’ ’bout my girl.”

Bob Saylor and Marcelene McMartin were 14 when they met at East High School in Sioux City, Iowa. They married at 18.

The song of their life together is “My Girl,” by the Temptations. Their boat, docked at Table Rock Lake, is “My Girl II.”

He plays that song every time they leave the dock.

“She has been my pillar of faith,” Bob says of his wife. “She has been my caregiver. She is my wife. She has kind of been my everything.”

Although he is ready to die, he clings to this good life of rewarding work, three brothers, four children and seven grandchildren.

“I still feel I have so much to teach people,” he says. “I have physicians coming down the hallway to discuss cases, to talk about things.”

He blames no one and no thing for his cancer.

“I never said to myself, ‘Why me? Why is this happening to me?’ I guess I have never been that way. What is going to happen is going to happen.”

He has a medical directive that gives Marcie oversight of his care. He will not tell me what it says. He does not want to unduly influence anyone else’s decision of what they should do. That decision is personal. It is based on the narrative of one’s own life.

But he does offer this: “I am far more concerned about quality of life than quantity of life.”

SOGI task force

I first met Bob at Brentwood Christian Church, where we attend. He sought me out to discuss our coverage of the community debate on the Sexual Orientation and Gender Identity ordinance.

This was before the ordinance was repealed in April. Bob was on the SOGI task force. He supported the law.

“Our job as a community and as a government is not to legislate morals,” he tells me. “It is to protect people from harm.”

The issue of protecting people based on their sexual orientation was important to him in large part because years ago he treated AIDS patients while in the Army at Fort Sam Houston.

Later, he was one of the few physicians who treated AIDS patients in the 1980s in Sioux City. And he treated them in Springfield, at Mercy, as well.

Bob served on the task force with others, including Dick Hardy, a former president of the Assemblies of God Central Bible College, which has since ceased operation. Their views on social issues — including SOGI — are as different as the music of Black Sabbath and, let’s say, the Temptations.

The two men discovered they both attended East High School in Sioux City. They did not know each other in high school. Hardy is 61.

They met for lunch. Hardy showed up in his high school letter sweater.

“We talked about life and friendships,” Hardy says.

They understood each other better; they respected each other; but continued to disagree.

“A friendship and a relationship are far more important than any task force that comes and goes,” Hardy says. “A friendship is from start to finish.”

Hardy calls Bob regularly.

“He will just start out in prayer,” Bob says. “They are beautiful prayers. He is a wonderful man. Yes, we have completely different social ideas. But he cares not about that. He cares about me as a person.”

The hopes of others

If anything, Bob is a pragmatist. As such, when he was first diagnosed he was unsure how to respond to those who said they prayed for him.

“I’m not sure if their prayers are going to matter in terms of whether I live or die — but it helps them,” he says. “My oldest son, Rob, has told me that when people pray for me it means they care about me. And if I ask people not to pray for me I take away their hope. I leave them only with despair. And I don’t want to do that.”

I ask Bob if he believes in an after-life.

“Do I want to? Yeah, I want to. Everybody wants to. I guess I do. I suppose I do. … I am not sure what life is before we are born or after we die. I guess that is as existential as you can get.”

I ask if he is in pain. He is not.

What is your greatest concern?

“Losing my cognitive ability is my greatest fear of all,” he says.

“Your business is your mind. If I can’t do what I want to do or am trained to do, it would be very difficult for me. Very, very difficult.”

He has, thus far, kept his sharp mind and occasionally sharp tongue.

“Some people think that during my brain surgery they should have taken out a little more of my sarcasm,” he says.

Bob can no longer walk on his own. His left hand still does not function. Yet he writes extensively on the website Caring Bridge about the loves of his life: his wife, his brothers, his parents, his co-workers, his in-laws, his pastors.

He will not pen good-bye letters to his four children. He doesn’t want to tip the scale of memory to his final days.

He and his father, who is deceased, shared a love of poet Robert Frost, and in particular the poem “Stopping by Woods on a Snowy Evening.” It is a poem about the inevitability of death.

A few months ago, Bob dreamt of his father reciting this poem to him in his baritone voice. Bob believes the dream has meaning — that his life will continue to have value until it ends. The closing stanza is:

“The woods are lovely, dark, and deep.

“But I have promises to keep.

“And miles to go before I sleep.

“And miles to go before I sleep.”

Complete Article HERE!

What’s a Death Midwife? Inside the Alternative Death Care Movement

From funeral cooperatives to green burials, there’s a kinder, gentler, less expensive way to die.

YES! illustration by Jennifer Luxton.


Char Barrett walked into a quaint cafe in Seattle with business in mind.

Over the smell of coffee and freshly baked tarts, she was going to advise a client on how best to host a special event at her home, helping coordinate everything from the logistics of the ceremony, to how to dress the guest of honor. People might cry, they might laugh, and all attention would be on the person of the hour—only that person would never see, hear, or enjoy the festivities, because they would be dead.

001“People looked at me like I had two heads when I said, ‘Keep the body at home after the person dies,’” says Barrett, a Seattle-based funeral director and certified “death midwife.” “For families who want it, they should have the right to do it.”

Barrett has been practicing home funerals in the area since 2006 through her business, A Sacred Moment. In a home funeral service, the body is either brought back to the family from the place of death or stays at home if the person died there. The family then washes the body, in part to prepare it for viewing and in part as a ritual.

“It’s really the way we used to do it,” says Barrett.

To Barrett and many other professionals who are offering alternatives to the more status-oriented, profit-driven funeral industry, it’s time to rethink how we handle death. From consumer cooperatives that combat price gouging, to putting the power of choice back in the hands of the family, the city of Seattle has become a hub for alternative death care in the last two years, according to Barrett. The subculture of “deathxperts” want not only to empower their clients, but also potentially phase out their jobs altogether—a sort of death of the funeral director as we know it.

A History of Death

For the majority of human history, families handled arrangements for the deceased, from the time immediately after death, to burial or cremation. Until the advent of modern hospitals and health care at the turn of the last century, it was the norm for the old and sick to die at home surrounded by loved ones.

During the Civil War, embalming as a form of preservation found a foothold when Union soldier casualties needed to be transported from the sweltering South to mourning families in the North. Today, its pragmatic purpose is to temporarily stop decomposition for viewing and final goodbyes. However, the overwhelming majority of contemporary consumers don’t realize that, in most cases, it’s not legally required to bury a body, although special circumstances vary from state to state.

So why has probably every American funeral you’ve been to had an embalmed body in attendance?

As 20th century consumerism took hold and people were more likely to die in a hospital than at home, death receded from public consciousness. If a loved one were to die today, you would probably call and pay a funeral home to pick her up from wherever she took her last breath. They would wash her, embalm her, and dress her to your family’s liking. You would briefly visit her one last time at a mortuary or a chapel before she was either buried or burned. In all likelihood, her last bodily contact before disposition would be with a complete stranger.

In 1963, investigative journalist Jessica Mitford published “The American Way of Death,” an exposé of the country’s funeral-industrial complex, showing how it exploited the emotions of the living so it could up-sell unnecessary services and products, such as premium caskets and premier vaults. Federal Trade Commission regulations and consumer protections now prevent families from being swindled.

002Today, the funeral industry has become managed in part by aggregate companies. Mortuary giant Service Corporation International owns a large network of individually operated funeral homes and cemeteries, some of which exist on the same property as combination locations. If you imagine a standard funeral parlor and graveyard, you’re probably picturing an SCI-owned operation. Of the approximately 19,400 funeral homes in America, the publicly traded company owns about 2,300 homes, according to the National Funeral Director’s Association. Families and individuals privately own most of the rest.

“The reality is that if you can’t adapt to compete with SCI, you probably shouldn’t be in the market,” says Jeff Jorgenson, owner of Elemental Cremation and Burial, which prides itself in being Seattle’s “only green funeral home.” “But SCI is one of the best competitors you could ever hope for because they’re slow to change and they’re exceptionally resistant to anything progressive.”

Jorgenson started his business in 2012 with a special focus on carbon-neutral cremations and “green” embalming using eco-friendly preservatives. In every aspect of his operation, he works to be as environmentally minded as possible, an objective he sees lacking in most business models.

As SCI spent the 1960s through 1990s acquiring independent funeral homes to maximize profits, another organization was doing the exact opposite by forming a collective to prioritize consumer rights.

People’s Memorial Association is one of the nation’s only nonprofit organizations that pushes consumer freedom for end-of-life arrangements. Located in Seattle, the consumer membership-based group coordinates with 19 different death care providers across the state to offer fixed-price burial, cremation, and memorial services, as well as education and advocacy to encourage death care alternatives. Almost all of the funeral homes are privately owned and have a uniform price structure for PMA members, who contribute a one-time fee of $35. Barrett’s A Sacred Moment is one of PMA’s partners.

003“We negotiate contracts with the funeral homes so members walk in knowing exactly what they’re going to pay, and it’s usually a pretty significant discount from the usual prices,” says Nora Menkin, the managing funeral director of the Co-op Funeral Home. PMA founded it in 2007 when SCI decided to cancel arrangements with several of PMA’s partners. Now, PMA-contract homes offer full-service funerals for 65 percent less than the average local price, according to a 2014 price survey conducted by the PMA Education Fund.

“There’s no sales pressure, there’s no up-selling, and we make sure people get what they need,” says Menkin. “It’s about the consumer telling us what they want.”

Jorgenson’s Elemental Cremation and Burial works outside the umbrella of PMA’s service providers, but he still finds allies in Menkin and the Co-op Funeral Home.

“We’re in it to change an industry,” he says. “Just one of our voices out there is useless. There’s a kinder, gentler, less expensive way, and that’s what we’re all doing. It’s helping families in a new, more collaborative way.”

In Jorgenson’s opinion, you don’t even really need a funeral director.

“A funeral director is a wedding planner on a compressed time scale,” he says. “With the exception of the legality of filing a death certificate, a funeral director does the exact same things a wedding planner does: They make sure that the venue is available, that the flowers are ordered, the chaplain is there for the service, and that the guest of honor, be it the bride or the dead person, is there on time.”

In Washington state, some of the only legal requirements are preservation of the body 24 hours after death by way of embalming or refrigeration, obtaining a signed death certificate, and securing a permit for disposition of the deceased.

If the body will be kept at home for longer than 24 hours, preservation can be achieved by putting the body on dry ice for the duration of the viewing. Once the family has had enough time with the person, he or she will be removed for final disposition, which includes burial, cremation, or scientific donation.

“A funeral director that is truly in earnest with the services they’re providing these families would have the courage to say that,” says Barrett. “A family can do this themselves. They don’t need a licensed funeral director, especially in the 41 states where legally a family is able to sign their own death certificate.”

Even families who still want the guidance of a professional shouldn’t feel powerless.

“Too many people go to funeral homes and just want to be told what to do, because they haven’t been through it or they don’t want to think about it. That gives the funeral homes way more power than they really deserve,” says Menkin.

Ideally, a funeral home should educate consumers and encourage them to make informed decisions, she says, ultimately just acting as an agent to carry out their wishes.

The Process

For almost every modern funeral home preparation procedure, there is a more sustainable alternative. Dry ice can offset the need for embalming for brief viewing or shipping purposes. In instances where some form of embalming is necessary, such as a violently traumatic death, a mix of essential oils can replace the toxic mix of tinted formaldehyde. Even in the case of burial, biodegradable shrouds can eliminate the need for wood and metal caskets built, in theory, to last forever.

The distinctions apply to cemeteries too, which are divided into several camps as outlined by the Green Burial Council, the industry authority on sustainability. It assigns funeral homes, cemeteries, and suppliers a rating based on strict environmental impact standards, which scrutinize everything from embalming practices to casket material.

004There are traditional cemeteries with standard graves, monuments, mausoleums, and often water-intensive grass landscaping. The next step up are hybrid cemeteries, which still may have regular plots, but also offer burial options that don’t require concrete vaults, embalming, or standard caskets. Natural burial grounds, the middle rank, prohibit the use of vaults, traditional embalming techniques, and burial containers that aren’t made from natural or plant-derived materials; landscaping must incorporate native plants to harmonize with the local ecosystem, conserve energy, and minimize waste. Premier green burial occurs on conservation burial grounds, which in addition to meeting all of the above requirements, requires partnership with an established conservation organization and be dedicated to long-term environmental stewardship.

Natural and conservation burial grounds must limit the use and visibility of memorials and headstones so as to preserve the native visual landscape as much as possible. Some properties have switched to GPS-based plot markers—visitors wouldn’t know they’re in the middle of a cemetery unless they were looking for it.

As consumers become more comfortable with taking charge of their dead, there will be more room to introduce new methods of body disposition, such as alkaline hydrolodis, a type of liquid cremation, and body composting. Earlier this year, supporters successfully funded a Kickstarter campaign to start research on the Urban Death Project, which aims to turn decomposing bodies into nutrient-rich soil. According to Jorgenson, sustainable burial practices are still part of a boutique market, though that doesn’t change his bottom line.

“Death is difficult. People don’t really want to experiment with mom,” he says. “But I count myself fortunate to be out there as one of the people that offers these alternatives, should someone want them.”

“The co-op movement is bigger in other countries,” says Menkin, who attended the 2014 International Summit of Funeral Cooperatives in Quebec. “Canada has a large network of funeral cooperatives, but it’s a bit more like a traditional funeral industry, just with a different business model. They’re not about alternative forms of disposition or changing the norm. We’re kind of writing the book on this one.”

Eventually, those conversations may become commonplace.

“Now when I mention home funerals to people, they don’t think anything of it,” says Barrett. To her, the time has come for people to think outside the box—literally.

Complete Article HERE!

Zen and the Art of Dying Well

The Amateurs Guide Cover

Right-to-die advocate dies without reprieve: San Mateo resident Jennifer Glass fought for new legislation

By Samantha Weigel

Just months after urging the California Legislature to empower her to cease her suffering on her own terms as she battled an aggressive form of cancer, Jennifer Glass died in her San Mateo home Tuesday night.

Jennifer Glass died in her San Mateo home Tuesday night after battling stage 4 lung cancer. Glass had sought changes to state legislation so she could have controlled how she died.

Despite her condition, the 52-year-old was an active advocate for Senate Bill 128: End of Life Option Act and her supporters remain saddened the legislation, which could have allowed Glass to avoid more suffering, stagnated in the Assembly.

A former communications specialist who took charge of high-power campaigns such as for Facebook and Oracle, Glass turned her attention to the state’s right-to-die initiative after being diagnosed with stage 4 lung cancer in 2012, just four months after marrying her husband Harlan Seymour.

A national spokeswoman for the movement who worked closely with the advocacy group Compassion and Choices, Glass died while California lawmakers stalled on a right-to-die law. SB 128 would give patients who are terminally ill the right to terminate their own life after completing a series of checks and balances with doctors and mental health professionals.

Glass fought to extend her life through chemotherapy as well as radiation and even did better for a time; however, a CT scan taken in June of this year showed her cancer had spread to her lungs, liver, abdomen, pelvis and brain. Unable to tolerate chemo, she decided to die at home, Seymour said.

As her lungs filled with fluid making breathing difficult and her pain increased, Glass opted to undergo palliative sedation — a process in which she is medicated into a coma then nutrition and fluids are withheld until the patient dies from the disease or dehydration.

It took her more than five days to die, a disheartening time marked by her awaking from the coma in a panic one evening, Seymour said.

“By the time she started palliative sedation, she was in so much pain, she really couldn’t say goodbye to people. If there was an end-of-life option, she could have started earlier, even just one day, she could have said goodbye to her loved ones and had a quiet death,” Seymour said. “Palliative sedation is really just a slow motion version of what the end-of-life option offers. Instead of a seven-day, dragged-out death in a coma, it’s a death that could just last a few hours and allows for a better ending with one’s family. … It would have been a great comfort to her if she had the choice to end her life in a faster manner. She would have suffered less.”

Had SB 128 been enacted, Glass would have been able to obtain aid in dying through prescription medication that she could have taken at home allowing her to die in her sleep, sometimes in as little as 30 minutes — as in the case of Brittany Maynard, a 29-year-old Bay Area resident who moved to Oregon to exercise her right to die, according to a press release from Compassion and Choices.


Opponents say SB 128 could have unintended consequences as insurance companies looking to cut costs or those without good access to health care may be more inclined to use these types of laws.

“The concerns of our coalition, there are many but primarily, is that you cannot base broad public policy decisions on one case, you have to look at all of California and not just a single individual or a narrow group of individuals,” said Tim Rosales, spokesman with the Californians Against Assisted Suicide. “Consider how these policies would impact everyone in a state as diverse as California; particularly in parts of California where people do not have access to the types of health care where they can get second and third opinions or access to better treatment.”

Rosales noted many states across the country turned down legislation dealing with the issue this year and instead, California should focus on making hospice and palliative sedation more accessible.

Another option

While opponents often cite palliative sedation as a suitable alternative, representatives from Compassion and Choices argue Glass’ case proves it didn’t allow her to die peacefully.

“With Jennifer, it obviously did not work as effectively. … It’s really important for people to understand that in reality, palliative sedation does not work for everyone and those folks need another option. Medical aid in dying is that option,” said Toni Broaddus, campaign director for Compassion and Choices California. “In that sense, this legislation is really somewhat neutral because it doesn’t tell anyone what they have to do at the end of their life, but it says you can have all the medically possible options out there at the end of life. Public policy, and this is good public policy, I think is for the state not to be telling people they can’t have access to a service or prescription that many other states are using.”

Glass’ family agreed adding palliative sedation is not as dignified and can be much more painful for both the patient and their loved ones. Glass’ sister Mavis Prall noted it was not the quick nor peaceful option she was fighting for.

“She did not want her loved ones to have to watch the life drain from her over a five-day period, nor to watch her lose all dignity as her body slowly shut down,” Prall said in the press release. “Members of the California Legislature should be aware that their inaction has painful consequences. I urge them to pass the End of Life Option Act this year.”

Glass publicly spoke in support of SB 128, co-authored by state Sen. Bill Monning, D-Carmel, as she fought to provide those who are suffering with a choice.

‘Keep fighting’

Glass had been scheduled to testify in the Assembly’s Committee on Health July 7 but the hearing was canceled and has yet to be rescheduled. Broaddus acknowledged while SB 128 easily passed the Senate, there weren’t enough votes in the Assembly. Yet as Glass requested, they will continue to advocate for the bill to be adopted this year, Broaddus said.

“Her message to us had been ‘keep fighting, don’t stop fighting,’” Broaddus said. “This issue is very very personal for people. Despite what it may appear, it does not break down party lines or ideological lines. It’s something people look at very personally based on their own experience.”

Sen. Monning expressed his condolences while noting SB 128 is still in action.

“My heart goes out to her family. We will continue to pursue Jennifer’s commitment to establish the right of terminally ill patients to have all end-of-life options made available to them,” Monning wrote in a press release.


Seymour said he would continue to support the right-to-die movement that could have spared his wife from further suffering and prefers she be remembered as a strong, loving and logical woman.

“Jennifer was very worried about suffering greatly in the process of her death, and she was concerned about what it would do to her loved ones. She didn’t want to die drowning in her own lung fluid and that’s essentially how she died,” Seymour said. “If you allow palliative sedation, there’s no reason not to allow a faster, less traumatic, less painful way of going as well. … I really want to see Jennifer’s legacy and her dream of having an end-of-life option come true.”
Complete Article HERE!

Cancer Death & Dying: I Don’t Want to Die and I Don’t Want It to Hurt

Fear of death and dying is explored by a two-time cancer survivor. There are benefits to taking a moment to look at these fears today.

By Barbara Tako

The fear of death and painful dying is in my face, for me and I suspect for other cancer survivors too. It is natural and normal to have these concerns, but rather than avoid death worries, it may be reasonable to take a deep breath and face those thoughts a bit. Maybe the fear can be reduced if we contemplate and explore death for a moment.Barbara Tako

I don’t want to die. Who wants to be separated by death from their loved ones? I also don’t want to go through chemotherapy again. I don’t want to lose my hair again. I don’t want to be set apart from the people I care about. I don’t want to suffer again. I don’t want the “long goodbye.”  I also visualize the long goodbye as a lingering and painful death with my loved ones nearby watching me be upset. Who wants that? How can we cope?

When I talk to other cancer survivors, they often tell me that they, like me, are more afraid and worried about a painful lingering death process than death itself. I decided to talk to some palliative and hospice care people, as well as my psychotherapist. Let’s look these huge issues right in the face.

Dealing with the possibility of death or a long painful death directly with honesty has the potential to help the coping process. Death is terribly huge and frightening. Our culture likes to bury the reality of death and, for the most part, much in the way of discussion or preparing for death. Why not work on preparing instead?

The medical professionals that deal daily with these situations say there are now a lot of excellent drugs out there to help people manage end-of-life pain. They also say, most of the time, they can keep a dying cancer patient pretty comfortable. I felt calmed to hear that and I still don’t want to die. No one wants to die. The reality is that death will happen to everyone, sooner or later.

The psychotherapist I spoke to approached it differently. She said people facing end of life who haven’t reflected before on their own death might feel angry and cheated or afraid of the dying process. To me that makes sense. Who wouldn’t be angry and bitter to have their life cut short by cancer? Yet, she said people facing death in their eighties and beyond can feel this way too.

She said sometimes people have unresolved relationships and issues. I saw a clue in her words. The point of contemplating death is to live deeply now and make conscious choices about how you want to try to approach your death. I don’t want to be jealous, angry or afraid at the end. Those are awful feelings. What to do? Face those issues and feelings today, resolve my cancer anger and fear, deal with it, and cope with it now. Live my life deeply, now.

I have resolved to try to do better at my relationships where possible—to be more honest and loving with the people around me. I won’t always succeed. I am human, but thinking about these end-of-life worries motivates me to try harder. I don’t want to die bitter and angry about “unfinished business.” No one probably feels everything is “done,” especially if death comes sooner rather than later, but why not work on death today?

What else? I have decided to actively practice gratitude. I have had some awesome life experiences. I have a very nice life compared with many people in this huge world. I have so much to be grateful for in spite of having two cancers, and I will try to remember that and to focus on that. I will try to slow my life down where I can, prioritize better, and live deliberately. This fall I am going to explore yoga and meditation. Meditation helps slow my life and my racing thoughts down. It helps me to live in the moment and to live more pleasurably, deliberately, and deeply. I will also continue to add to my bucket list and try to work on those items too.

Finally, I will try to keep the faith. Whatever your belief system is, try to hang onto it, grow it, and receive comfort from it. That means, for me, I need to practice my faith on a daily basis. I read. I pray. I talk to God (sometimes I yell or rant). I try to create stillness inside me where sometimes I hear answers in the quiet of my soul.

In truth, none of these thoughts are a complete answer. There are books and books written about death and dying. Right now, I am grateful that I am not facing end-of-life issues today. I don’t truly know what that feels like. It does help me, though, to spend some time looking at these worries and fears in the face and to spend some time thinking about my plan.

Facing uncertainty with a plan, for me, is better than facing it with nothing at all. The best plan would be no pain and no death, but that is not how our world works. I know this is probably a naïve approach when looked at by people with advanced cancer. It is the best I can do with my hopes for all of us, and my (gratefully) limited perspective, and my lingering fear of recurrence and what recurrence might mean. What are your plans? What works for you?
Complete Article HERE!

After surviving the Holocaust, letting go of life is complex

By Melissa Apter

A Holocaust survivor looks at a candle commemorating the liberation of Auschwitz Birkenau, January 27, 2015, in Ayr, Scotland. (Jeff J. Mitchell/Getty Images)
A Holocaust survivor looks at a candle commemorating the liberation of Auschwitz Birkenau, January 27, 2015, in Ayr, Scotland.

Jewish hospice chaplains confront the emotional and medical complexities of death and dying every day, but Holocaust survivors present special challenges.

Rabbi E.B. “Bunny” Freedman, director of the Jewish Hospice and Chaplaincy Network, said that chaplains are increasingly being called on to provide spiritual support to survivors and their families.

“There are a lot of complex issues,” said Freedman, who has worked in end of life chaplaincy for 23 years. “One of them is making the decision of unhooking hydration – much more complex for a Holocaust family. The idea of not providing nutrition is crossing a sacred or not understood emotional line.”

Survivor guilt and mixed feelings at the prospect that they may “meet their relatives on the other side” commonly surface, he said.

Rabbi Charles Rudansky, director of Jewish clinical services at Metropolitan Jewish Health System’s hospice in New York, reported similar experiences with Holocaust survivors he had counseled.

“Last time they saw their loved ones was hellish, hellish, hellish, and now they’re crossing that bridge,” said Rudansky.

Some Holocaust survivors are apprehensive at that prospect, he said, while others are “uplifted.” A usually talkative person may fall silent, while a quiet person may suddenly have a lot to say.

“I’ve been called in by Holocaust survivors who only want to speak with me so some human ears will have heard their plight,” said Freedman.

Jan Kellough, a counselor with Sivitz Jewish Hospice and Palliative Care in Pittsburgh, said she encourages, but never pushes, survivors to share their stories. While it can be therapeutic for some survivors to talk about the Holocaust, she said, it is problematic for others.

Rabbi Freedman giving a presentation to hospice workers in Baltimore, Maryland, spring 2015. (Courtesy: Dr. Gary Applebaum)
Rabbi Freedman giving a presentation to hospice workers in Baltimore, Maryland, spring 2015.

For some survivors, “there’s an attitude of not wanting to give up, there’s a strong will to fight and survive,” said Kellough.

Children and grandchildren of survivors can also struggle to cope with their loved ones’ terminal illness, said Rudansky.

He said such people tell the hospice staff, “’My grandfather, my father survived Auschwitz. You can’t tell me they can’t survive this!’ They have great difficulty in wrapping their heads around this is different — this is nature.”

That difficulty can be compounded by the fact that children of survivors may not have had much contact with death in their lives, said Rabbi David Rose, a hospice chaplain with the Jewish Social Service Agency in Rockville, Maryland.

Because so many of their family members were wiped out in the Holocaust, children of survivors may be less likely to have experienced the death of a grandparent or aunt or uncle.

“That’s one of the benefits of hospice. We work with them and their families to help them accept their diagnosis,” said Kellough.

Hospice offers families pre-bereavement counseling, 13-months of aftercare and access to preferred clergy.

Special sensitivity is paid to spouses who are also survivors.

“Survivor couples, particularly if they met before the war or just after the war are generally exceptionally protective of each other,” said Rose. “A few different couples come to mind – every time I visited, the partner was sitting right next to their spouse, holding hands the whole visit.”

Freedman underscored that chaplains are trained not to impose their religious ideas on families, but rather to listen to the patient and family’s wishes.

“I tell the people I train that if you’re doing more [than] 30 percent [of the] talking in the early stages of the relationship, then you’re doing it wrong,” said Freedman.

“Seventy percent of communication is coming from your ears, your eyes, your smile — not your talking. Rabbis tend to be loquacious, we’re talkative,” he said. “But when I’m with a family, I am an open book for them to write on.”

Though the work is emotionally demanding, Freedman said, “Helping people through natural death and dying is one of the most rewarding things people can do.”

Complete Article HERE!

Feather Death Crowns: Appalachian Omens of Death

In Appalachian culture, a bizarre phenomenon of feather crowns found in the pillows of sick people became known as an omen of death.

Vintage feather death crown photo by Lori Kimball
Feather death crown dating somewhere between the 1800s and the 1930s.

By J. Nathan Couch

Feather pillows are about as rare the Loch Ness Monster, but once upon a time they were as common as could be.

Long ago, the people of Appalachia began to notice a peculiar phenomenon: odd crownlike masses in the pillows of the seriously ill or recently deceased.

These objects became known as Death Crowns (or less-commonly, angel crowns). Death Crowns are usually elaborate, interlocking designs that resemble a disc or crown. The quills always point inward, and though rare, are only found in the feather pillows of the seriously ill or recently deceased.

Because of the isolated, rural nature of the area, the phenomenon appears to be unique to Appalachia, or locations where some of these mountain folk migrated, such as Missouri, Indiana, and Ohio. But it’s almost exclusively a lost-belief now that most people have switched out their feather pillows for comfort foam or synthetic fibers.

I was fortunate enough to overhear a death crown story in my youth, otherwise I’d likely be unaware such a concept ever existed. My family has lived in Hall County, Georgia for generations, just miles from the foothills of the Blue Ridge Mountains.

My great aunt paid us a visit when I was maybe 5 years old. She started talking about the recent death of her elderly father. He’d been killed while walking around a bus he’d just exited. A car sped by without caution, striking the old man. She was elected the sorrowful chore of sorting through her father’s belongings. As she lifted her father’s ancient feather pillow she felt something solid inside. She started to throw the pillow away, but something compelled her to open it up. She reached inside and probed with her fingers in search of what she had felt. To her astonishment, she pulled out an intricately woven wreath of feathers, roughly the size of a bird’s nest. She took this has a sign her father had gone to heaven.

After several minutes of convincing, she persuaded me to go play. After a while, I forgot about the whole thing—until bed of course. I recall squeezing and kneading my pillow in search of anything that might remotely feel like a “death wreath.” I didn’t. Finally, I fell asleep.

A vintage death crown with post-mortem photo and funeral card
Vintage death crown in a bell jar with post-mortem photo and funeral card.

These odd formations are usually interpreted as a heavenly sign, but skeptics believe that the movements of a dying person—tossing and turning combined with fever sweats–could cause these objects to take form.

If you are one of the few that still sleeps on feather pillow, do not lose all hope if you find a Death Crown in your pillow tonight. One old wives’ tale claims that if you break these wreaths up you could prevent the death of the person the pillow belongs to.

A collection of these oddities can be found at the Museum of Appalachia in Clinton, Tennessee.

Complete Article HERE!