The Jewish Perspective on Dying and Death with Rabbi Laurie Dinerstein-Kurs
The loss of a pet is often a child’s first experience with death. Understanding the unique ways that children view pets and respond to their passing can help parents to ease the grieving process.
Joshua Russell, an assistant professor of environmental science at Canisius College in Buffalo, who has studied the effects of pet loss in children, explained that for many children, pets are more than just animals. “Many kids describe their pets as siblings or best friends with whom they have strong connections,” he said.
In a study of 12 children ages 6 to 13 who had lost a pet, published in the journal Environmental Education Research, Dr. Russell found that even years after the pet’s death, some children still described the loss as “the worst day of their lives.” He also discovered that children come up with unique ways to rationalize their pet’s passing and that the way a pet dies influences how children grieve. “Children, in particular, have a distinct sense of existential fairness around whether or not an animal lived until an appropriate age,” Dr. Russell said.
A famous poet once wrote that “dying is an art, like everything else.” For hospice doctors, the artists of death, terminal agitation is the subject’s revolt against the shaper. It’s uncommon, but it can be difficult to watch when it happens. Instead of peacefully floating off, the dying person may cry out and try to get out of bed. Their muscles might twitch or spasm. The body can appear tormented.
There are physical causes for terminal agitation like urine retention, shortness of breath, pain and metabolic abnormalities. There are medications that quell it. Yet it’s hard to discount the role of the psyche and the spiritual. People who witness terminal agitation often believe it is the dying person’s existential response to death’s approach. Intense agitation may be the most visceral way that the human body can react to the shattering of inertia. We squirm and cry out coming into the world, and sometimes we do the same leaving it.
There was always this great tension between compassionate care and the cure, the cure, the cure,” said Campbell, recollecting her early years as a nurse in a Florida Veterans Administration hospital, “and at that point palliative care wasn’t very good, and the things we did to patients weren’t very good for them, either.”
While the memories still smart, Campbell’s relieved when she considers the expanse of modern palliative care, and the growing understanding that “there is such a thing as a good death.”
But drugs and technologies aside, palliative care remains rooted in compassionate presence. That might mean that light chit-chat, passing ice to the bedridden, or quietly holding a griever’s hand. It also might mean answering loved ones’ frank and probing questions –
What does death look like? How do you know if he’s in pain? Does she know we’re here at all? – or recommending medication adjustments for pain, based upon observed distress. Many times, though, Campbell’s just there, palms up, offering herself as a witness and a comfort.
Some patients approaching the end of life are in denial, assuming that they’ll live much longer than is realistic. Yet doctors often have a far more pessimistic estimate of their life expectancy, said Dr. Robert Gramling, the Holly & Bob Miller chair in palliative medicine at the University of Vermont College of Medicine. In a study published last year in the Journal of Clinical Oncology, only 5 percent of cancer patients with less than six months to live had an accurate understanding of their illness. Thirty-eight percent couldn’t remember ever talking to their doctor about their life expectancy.
And in a 2012 study in The New England Journal of Medicine, 69 percent of patients with metastatic lung cancer and 81 percent of people with advanced colorectal cancer thought they could still be cured, although both conditions are generally considered fatal, said study co-author Dr. Nancy Keating, a professor of health care policy and medicine at Harvard Medical School.
Such misunderstandings can have profound consequences for patients and their caregivers. Patients who don’t understand how long they have to live often choose overly aggressive therapy that can cause pointless pain and suffering. Nearly one-third of cancer patients end up in the intensive care unit, or ICU, in the last month of life, according to the Dartmouth Atlas of Health Care. Although intensive care can save the lives of younger, healthier people, it doesn’t improve or lengthen the lives of people with terminal cancer.
“It’s surprising how many people end up in an ICU, critically ill and dying, without realizing they’re dying,” said Dr. Mark Siegel, a professor of internal medicine and critical care specialist at the Yale School of Medicine. These last-ditch measures to extend life can leave families with extended grief and trauma, Siegel said.
Although almost half of Americans use hospice care — which focuses on comfort care at the end of life — studies show that many people enter hospice very late in their illness, often only a week before death. “The real question is, ‘How do these patients become overly optimistic about their prognosis and what part do physicians play in this?’” Siegel said. “What do physicians tell the patients? What are patients hearing?”"
To ward off the specter of elder isolation, we are redoubling our faith in individualism, strangely enough—or more precisely, our conviction that what you choose will be your fate. Bad personal choices get you a lonely death. Good personal choices, on the other hand, get you something like “The Death of Socrates,” that painting by Jacques-Louis David in which attendants throng around the deathbed, contorting their bodies in energetic devotion. (The hemlock may have been bitter, but at least he felt the love.)
Feats of self-improvement are what will put you on the path to a worthy end—and these days, those feats include spending money on the very thing that our new service economy is keenest to offer you: customized experiences. A doula-assisted death is a bespoke affair. Through made-to-order rituals, your death can be propelled into the realm of the unique, just like everyone else’s.
I had learned that the light of my sister’s spirit was stronger than her illness. It would survive.
In inpatient hospice, we gave my sister liquid with a dropper, squirting it into the back of her mouth. Sometimes, she could take a bit of applesauce on a spoon. We’d wait to hear a gulping swallowing sound. And then, after giving her time to rest, we’d try again. She was fading.
Family surrounded her day and night. We never sat down and talked about my sister’s wishes. But they informed what was happening along with another set of wishes, which we all understood but had never been articulated: “Treat me with respect. Be there by my side. Love me. Remember me.”
In the end, the feeding tube was a side issue. My sister was dying, one way or another, and nothing could change that trajectory. Her husband and children decided against artificial nutrition or hydration. It was what she’d said she wanted.
They don’t regret it. Neither do I. And yet. We didn’t turn away from the feeding tube because of the wishes my sister had laid out earlier. We were honoring both the person she had been and the person she had become by making sure she didn’t suffer unnecessarily. Every step of the way, we let her know her life had value.
And when the hard times came, we didn’t duck. We were fully present. My sister passed peacefully last November, surrounded by people she loved. She was 58. When I think of her now, I think of a romantic girl, an exhilarated college student, a striving 20-something, a passionate wife and mother, and a person with dementia whose lust for life and inner light shone all the way to the very end. That light has become a beacon, deepening my sense of what it means to be human and what’s possible at the end of life. I carry it with me to this day.
No one knew how to grieve like the Victorians. The elaborate and often downright weird rituals of the era – inspired by Queen Victoria who publicly mourned her husband’s death for forty years – provide a fascinating look at a culture for whom death was ever present. In the United States, losses from the Civil War eclipsed 600,000 deaths, or two percent of the entire population. Death was everywhere. Mourning was an art form. Widows dressed in black from head to toe for an entire year. Household mirrors were covered and clocks were stopped when a death occurred. Women created and wore intricate jewelry made from the hair of the deceased. And rural cemeteries were established across America.
Green-Wood is one such example, which by the 1860’s drew over 500,000 visitors a year who came to see the cemetery’s collection of ornate monuments and mausoleums. Join us for an afternoon symposium devoted to exploring the arts and culture of Victorian mourning with illustrated talks and show-and-tell presentations of period artifacts.
Speakers will include Dr. Stanley Burns, M.D., founder of the Burns Archive of photographic history and professor of medicine and psychiatry at NYU Langone Medical Center, Green-Wood Historian Jeff Richman, Evan Michelson, co-owner of Obscura Antiques & Oddities and host of the Science Channel’s Oddities, funeral director Amy Cunningham, Jessica Glasscock, Research Associate for the Metropolitan Museum of Art’s “Death Becomes Her” Exhibition, and more!
This symposium is organized in partnership with Joanna Ebenstein, founder of the former Museum of Morbid Anatomy and Laetitia Barbier, former librarian of the Museum.
"Two days before she died, Nina Riggs made a request: Don’t be afraid to read my book. There’s good reason for such a plea. Her book, “The Bright Hour,” is a memoir about the last two years of her life. She completed it in January; she died the next month, at age 39, of metastatic breast cancer....In an email interview from a hospice in Greensboro, N.C., Riggs, who had two young sons, remained remarkably upbeat: “I think a real gift that this experience gave me was forcing me to appreciate my life/death, not just my life. I had to embrace the experience of having cancer, because that experience was part and parcel to my experience of my husband, my kids, my dearest friends. So I would say I really hope the book I wrote will make you feel much more joy than anything else.”"The Bright Hour": This year's 'When Breath Becomes Air.' - The Washington Post:
Embracing Personal Rituals
A while back we asked WYG reader to share their personal rituals on our Facebook. We got so many amazing responses, things that speak to the unique and individual nature of the rituals that mean something to us. I’ve got lots of little ones, like the fact that I never turn down a piece of coconut cake. Whether it’s at a restaurant or a coffee shop, if it’s on the menu I order it. Because coconut cake always reminds me of my dad and family and childhood (even though I didn’t really like coconut cake then) so it is my own little private ritual, that can happen almost anywhere.
Rituals people mentioned included drinking coffee from a late spouse's mug, celebrating the birthday of a daughter who died at 16 every year by eating her favorite dessert, and wearing the bracelets of a mother who is no longer here to family events she would have loved.
Mr. Shields intended to die swiftly and peacefully by lethal injection, administered by his doctor. Last June, the Canadian government legalized what it termed “medical assistance in dying” for competent adult patients who are near death and suffering intolerably from irremediable illnesses. When his doctor, Stefanie Green, informed him that he qualified, Mr. Shields felt the first hope since a doctor told him more than a year before that he had a rare and incurable disease called amyloidosis, which caused proteins to build up in his heart and painfully damage the nerves in his arms and legs.
Having control over the terms of his death made him feel empowered over the disease rather than crippled by it, a common response among Dr. Green’s patients. Mr. Shields believed that dying openly and without fear could be his most meaningful legacy — which was saying something. The man had packed five lifetimes of service into one: He had been a civil rights activist, a social worker for children, the head of British Columbia’s biggest union and, most recently, the savior of a floundering land trust that included 7,191 acres of protected wilderness and historic properties.
His newly developed plan for how he would spend his last moments, though, worried his wife, Robin June Hood. Her husband had not left his bed once since he arrived at the hospice on a stretcher, 17 days earlier. His 78-year-old body had thinned; his voice dimmed. He lasted only 15 minutes in conversation before his eyes fluttered closed. Just leaving the room would exhaust him. She knew he could not make it to the restaurant, and there was no way she could tend to his needs at home, even for one night — especially his last. Happily, Dr. Green had become adept at brokering delicate family discussions over the past year. She had presided over 35 deaths since the law passed, each intimately different from the next. One man got dressed in his amateur clown costume, complete with wig and red nose, and died telling her jokes. He had insisted on being alone in the room with her, but most of her patients died surrounded by loved ones. Many were too sick to devise elaborate rituals, but others had chosen the location, attendees, readings and music as if planning a wedding. Dr. Green called them something she picked up at a conference on euthanasia in the Netherlands: “choreographed deaths.”
She arrived at Mr. Shields’s hospice room that day to finalize the plans. The couple held hands as she helped them stitch a compromise. On March 23, the last night of Mr. Shields’s life, they would host a party in the hospice solarium with Swiss Chalet takeout for all. The next morning, he would die in his hospice room. Then, his wife and stepdaughter would take his body home and lay it out in his beloved garden for two days. The plan, Mr. Shields said that afternoon, was “absolutely terrific.”
“When I meet a woman wearing a ring on a chain around her neck, I know immediately: member of the club,” Sheryl Sandberg said. “I never noticed before.” That club in question would be the unenviable one for people whose spouses have died. “What I loved about the chain was that I could put both our rings on it,” Elizabeth Alexander added. But these two club members, who met recently for breakfast, have more in common than jewelry.Both are young widows, and both found some comfort in writing about it. Alexander says, "If you can stay at the bone of what’s true, then that’s your lifeboat."
In her book, Lots of Candles, Plenty of Cake, author Anna Quindlen captures the significance of these relationships. “The thing about old friends is not that they love you but that they know you,” she writes. On an intellectual level, I know that part of life is death, yet I struggle to reconcile this unfair, if inherent, consequence. “In the second half of our lives, we experience more losses,” says Alan Wolfelt, an author, grief counselor and founder of the Center for Loss and Life Transition. “With aging comes the inevitable deaths of those we love. It’s hard, yes,” he adds, “but it’s also a time of opportunity to live, love and mourn as fully as we can.”
In the early weeks after Dave died, I was shocked when I’d see friends who did not ask how I was doing. I felt invisible, as if I were standing in front of them but they couldn’t see me. When someone shows up with a cast, we immediately inquire, “What happened?” If your life is shattered, we don’t.
People continually avoided the subject. I went to a close friend’s house for dinner, and she and her husband made small talk the entire time. I listened, mystified, keeping my thoughts to myself. I got emails from friends asking me to fly to their cities to speak at their events without acknowledging that travel might be more difficult for me now. Oh, it’s just an overnight? Sure, I’ll see if Dave can come back to life and put the kids to bed.
I ran into friends at local parks who talked about the weather. Yes! The weather has been weird with all this rain and death.
Many people who had not experienced loss, even some very close friends, didn’t know what to say to me or my kids. Their discomfort was palpable, especially in contrast to our previous ease. As the elephant in the room went unacknowledged, it started acting up, trampling over my relationships. If friends didn’t ask how I was doing, did that mean they didn’t care? My friend and co-author Adam Grant, a psychologist, said he was certain that people wanted to talk about it but didn’t know how. I was less sure. Friends were asking, “How are you?” but I took this as more of a standard greeting than a genuine question. I wanted to scream back, “My husband just died, how do you think I am?” I didn’t know how to respond to pleasantries. Aside from that, how was the play, Mrs. Lincoln?
At first, going back to work provided a bit of a sense of normalcy. But I quickly discovered that it wasn’t business as usual. I have long encouraged people to bring their whole selves to work, but now my “whole self” was just so freaking sad. As hard as it was to bring up Dave with friends, it seemed even more inappropriate at work. So I did not. And they did not. Most of my interactions felt cold, distant, stilted. In the moments when I couldn’t take it, I sought refuge with my boss Mark Zuckerberg. I told him I was worried that my personal connections with our coworkers were slipping away. He understood my fear but insisted I was misreading their reactions. He said they wanted to stay close but they did not know how. The deep loneliness of my loss was compounded by so many distancing daily interactions that I started to feel worse and worse. I thought about carrying around a stuffed elephant but I wasn’t sure that anyone would get the hint. I knew that people were doing their best; those who said nothing were trying not to bring on more pain, those who said the wrong thing were trying to comfort. I saw myself in many of these attempts—they were doing exactly what I had done when I was on the other side. I thought back to a friend with late-stage cancer telling me that for him the worst thing people could say was, “It’s going to be O.K.” He said the terrified voice in his head would wonder, How do you know it is going to be O.K.? Don’t you understand that I might die? I remembered the year before Dave died when a friend of mine was diagnosed with cancer. At the time, I thought the best way to offer comfort was to assure her, “You’ll be O.K. I just know it.” Then I dropped the subject for weeks, thinking she would raise it again if she wanted to. Recently, a colleague was diagnosed with cancer and I handled it differently. I told her, “I know you don’t know yet what will happen—and neither do I. But you won’t go through this alone. I will be there with you every step of the way.” By saying this, I acknowledged that she was in a stressful and scary situation. I then continued to check in with her regularly. As people saw me stumble at work, some of them tried to help by reducing pressure. When I messed up or was unable to contribute, they waved it off, saying, “How could you keep anything straight with all you’re going through?”
In the past, I’d said similar things to colleagues who were struggling, but when people said it to me I discovered that this expression of sympathy actually diminished my self-confidence. What helped was hearing, “Really? I thought you made a good point in that meeting and helped us make a better decision.” Bless you. Empathy was nice, but encouragement was better.
I finally figured out that I could acknowledge the elephant’s existence. At work, I told my closest colleagues that they could ask me questions and they could talk about how they felt too. One colleague said he was paralyzed when I was around, worried he might say the wrong thing. Another admitted she’d been driving by my house frequently, not sure if she should knock on the door. Once I told her that I wanted to talk to her, she finally rang the doorbell and came inside.
When people asked how I was doing, I started responding more frankly. “I’m not fine, and it’s nice to be able to be honest about that with you.” I learned that even small things could let people know that I needed help; when they hugged me hello, if I hugged them just a bit tighter, they understood that I was not O.K.
"So-called living funerals are "on the rise," says Denise Carson, author of Parting Ways (University of California Press, $35), which explores alternatives to traditional end-of-life mourning rituals. "Some look like a cross between a wedding and a funeral," she says. These celebrations provide an opportunity for someone who is near death to gather close friends and relatives and share memories. No rules or customs govern these get-togethers. They can take place anywhere, from a community center to a church or synagogue to a funeral home. "I've seen the honoree dressed in everything from a hospital gown to a tuxedo," Carson says. "Others are more somber, with prayers, psalms, anointing and last rites by clergy." Some attendees bring mementos, such as photos from a family vacation, or poems to recite. In the 1997 bestseller Tuesdays With Morrie by Mitch Albom, the book's subject, Morrie Schwartz, who knows his death is imminent, holds a living funeral in his home because he doesn't want to miss out on tributes to himself.
In the words of Amy Cunningham, a lecturer and in-demand funeral director in the New York City area, “We’ve mastered the wedding—but the funeral needs a lot of work....The funeral industry may have assumed it was safe from the whims of supply and demand; everyone dies, after all. But modern consumers are educating themselves and demanding more. If the funeral industry is to survive the 21st century, it will need to shed its old ways and begin to participate in open, frank discussions around what we truly want out of life—and death.”
In hospice, the family is your patient. They’re truly living their darkest days. For many of them, this admissions meeting is an overwhelming process. Every emotion that they have inside of them that maybe even hasn’t ever surfaced might come to the top. But I don’t want families to cry.
During that first meeting I don’t say: “So this is what we do for people who are dying.” I say: “Hospice is not about dying. It is about living the remainder of your life how you want to. Not how I want you to, not how your husband, wife, daughters, or sons want you to, and not how the doctor wants you to, but how you want to.”
If you think about the last time you went to the doctor, he probably said, “Okay, this is what I think. These are the tests I want to run.” Nobody asks you, “What do you think? Does this sound reasonable? Do you want to do it?” Nobody tells patients how their quality of life is going to go down the toilet when they get chemo. So it’s sometimes hard for patients to wrap their head around the idea that everything is their choice now, they’re driving the ship. That’s the mission of hospice.
We tend to defer the question of living or dying well until it’s too late to answer. This might be the scariest thing about death: coming to die only to discover, in Thoreau’s words, that we haven’t lived.
Facing death, though, is rarely simple. We avoid it because we can. It’s easier to think of “dying” as an adjective than a verb, as in a dying patient or one’s dying words. This allows us to pretend that dying is something that is going to happen in some distant future, at some other point in time, to some other person. But not to us. At least not right now. Not today, not tomorrow, not next week, not even next decade. A lifetime from now.
Dying, of course, corresponds exactly with what we prefer to call living. This is what Samuel Beckett meant when he observed that we “give birth astride the grave.” It is an existential realization that may seem to be the province of the very sick or very old. The elderly get to watch the young and oblivious squander their days, time that they now recognize as incredibly precious.
When dying finally delivers us to our unexpected, inevitable end, we would like to think that we’ve endured this arduous trial for a reason. Dying for something has a heroic ring to it. But really it’s the easiest thing in the world and has little to do with fame and fortune. When you wake up and eat your toast, you are dying for something. When you drive to work, you’re dying for something. When you exchange meaningless pleasantries with your colleagues, you’re dying for something. As surely as time passes, we human beings are dying for something. The trick to dying for something is picking the right something, day after week after precious year. And this is incredibly hard and decidedly not inevitable.
Whether someone dies in a hospital, hospice or residential aged care facility, it’s not unusual for their possessions to be passed back to their family in a plastic garbage bag. An End of Life Care Committee in Queensland has developed a more sensitive and respectful approach, which it hopes will be adopted nationally.
The Committee, from Sunshine Coast Hospital and Health Service (SCHHS), developed handover bags, which are printed with a tree symbol designed to represent the cycle of life.
“The aim of the handover bags is to convey to the family and staff that whilst the person was a patient with us, we cared for them and respected them,” says SCHHS principal project officer for End of Life Care, Wendy Pearse.
“This care and respect begins the moment they arrive with us, until the time they leave. We will treat their belonging with the same care and dignity that we showed to the person who died.”
The same purple symbol is printed on resources which can be given to families in the bag, including a bereavement card and a booklet titled “When someone dies…”. It also features on door signs which indicate to staff and visitors that a patient has died.
Amy Cunningham, wearing Buddhist prayer beads and rose-colored pom-pom earrings, prepared to lead the discussion. She's run the Brooklyn Death Café, an offshoot of the international movement to normalize conversations about death, since 2015. "These Death Cafés are, in our own way, bringing the dead back into our daily lives," Cunningham explained, "by visiting and communing with them and going to spaces like the crematory and seeing the urns in the wall. This is altogether a healthy and positive thing." Cunningham, who worked as a writer and editor for decades, became involved in the death industry after her own father's passing, with hopes of helping others cope with the passing of a loved one as her own funeral director had helped her. She is now an independent funeral director focused on eco-friendly burial and cremation. The cafés, which she leads as a volunteer, are another element of her practice. "I just thought it'd be a nice way to educate people," Cunningham says. "Death shouldn't be so scary. The more we move in toward death, the more we'll learn and put ourselves at ease about our own inevitable demise."
When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could, and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.
We didn’t think Randy’s mother would thrive or even survive when she was widowed. Larry and she had also been together since they were teens. She wasn’t eager to move into a senior living community, but we wanted her to be closer to us, so we insisted. It took months for her to go from resentful to enthused. She made friends and signed up for chair yoga, current events, and every museum outing. She dyed her hair red. She was an energetic dumpling zipping around on her walker, usually with a banana or two tucked inside the seat. (When we flew to Chicago for my stepdaughter’s wedding, Ruth was stopped going through security. A gun-like object had appeared in the seat of her walker: a banana.)
Then, over a hot bridge game, she met Otto, now 94 years old.
He’d had so many illnesses and operations that even he couldn’t believe he was still alive. “I have no organs left,” he said. “I’m held together by pills.” By then, Ruth was back and forth to hospitals with heart problems. But that failing heart adored Otto. At night they’d take turns visiting each other’s apartments and watch reruns of Hogan’s Heroes, sometimes The Carol Burnett Show....
Last December, when the doctor told Ruth that her heart had weakened, she said, “No more hospitals.” He explained that she would “most likely pass from this.” Her response: “I’ve led a blessed life. I’m ready to go home.”
Hospice care was set up in her apartment. The way she wanted. When we received the early morning call from an aide saying that Ruth’s pulse had stopped, that she was gone, we hurried over to find hospice workers waiting in her living room. But it was a sobbing Otto who was sitting by her bedside, watching over her, until Randy and I arrived.
The therapeutic humor movement is catching on. Last year, the Minnesota Network of Hospice and Palliative Care, which serves Minnesota, Wisconsin, Iowa, North Dakota and South Dakota, closed its annual conference with a session from a humorist. And this year, the conference will open with a session on laughter yoga. “Laughter, of course, is a healthy thing,” said Susan Marschalk, the network’s executive director. “It’s certainly good for people who are caregivers. It’s really good for hospice providers and the people who are working with patients who witness people dying every day. They need laughter.” The connection between humor and health also is recognized by the Association for Applied and Therapeutic Humor. Based in Illinois, the group was started by a registered nurse and has members in Minnesota from various professions — including scholars, psychologists, nurses and doctors. Therapeutic humor is “any intervention that promotes health and wellness by stimulating a playful discovery, expression or appreciation of the absurdity or incongruity of life’s situations,” the group’s website says. “There is a very close relationship between laughter and tears,” said Mary Kay Morrison, president of the association and a self-described “neurohumorist.” “Laughter is a relief. When you laugh so hard that you cry, there is a close connection there. It’s something that brings relief from the stress and anxiety. “Even in hospice, I believe when someone is able to laugh about the situation, you know they are starting to accept it and starting to cope with it,” she said. “Even in hospice, I believe when someone is able to laugh about the situation, you know they are starting to accept it and starting to cope with it,” she said.
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My friend Frank (not his real name) answers his phone. He has this notoriously unreliable Bluetooth earpiece that he loves to use. Today it’s having a bad day. He sounds like a Martian. I tell him I’ll call back. When he answers the second time he’s no longer a Martian. I say, “Ah! It’s my old friend Frank – the one I know and love!”
This joke brings him to tears because he’s not my old friend Frank, he’s the new Frank. The one who is fighting a disease that will shorten his life dramatically. This sort of painful moment has become more and more common in our conversations. We’ve been doing these regular phone calls for several years now, starting long before the disease was discovered. In the beginning, our conversations were sometimes awkward, maybe even boring. But they were meaningful enough that we kept having them. Today, neither of us would give them up for the world. They have become a touchstone of sanity for us, a sanctuary from an increasingly chaotic and unpredictable world. We have discovered that we love these conversations and we love each other.
A new boutique coming to Nyack will celebrate life by focusing on the green, ecologically-friendly aspects of death to rebirth. That’s right, death. It will happen to all of us. But that’s not news. Sometimes, the discussion of death, its circumstances and everything involved are difficult topics to address. However, there is a growing movement going back to the basics....
Kerry Potter of Suffern has long been an advocate for a greener Earth. She is the founder the Rockland Community Foundation’s “Green Cemetery Fund” and is opening Dying to Bloom, her new, natural burial boutique, with a grand opening on February 25, 2017. The store is located at 48 Burd Street in Nyack, across the street from Squash Blossom. “I lost both of my parents in my twenties. At that time, we didn’t think twice about having them embalmed and entombed in a cement vault. As I became educated about the industry, I realized green burials fall more in line with my appreciation for the environment and the planet we leave for future generations. For what seems like an eternity, I have been looking for a way to help advocate and support the trend back to nature and simplicity. We’ve learned to make recycling cans, bottles and newspapers part of our everyday life. We should strive to do the same in death,” said Kerry Potter, Founder, Dying to Bloom.
[W]hen brain imaging studies are done on people who are grieving, increased activity is seen along a broad network of neurons. These link areas associated not only with mood but also with memory, perception, conceptualization, and even the regulation of the heart, the digestive system, and other organs. Prevention Magazine
I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. Too many of our patients die in overmedicalized conditions, where treatments and technologies are used by default, even when they are unlikely to help. Many patients have I.C.U. stays in the days before death that often involve breathing machines, feeding tubes and liquid calories running through those tubes into the stomach. The use of arm restraints to prevent accidental dislodgment of the various tubes and catheters is common. Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish. Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. We need to learn how to make a place for death in our lives and we also need to learn how to plan for it. In most cases, the suffering could have been avoided, or at least mitigated, by some education on death and our medical system. The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them. I am a passionate advocate for educating teenagers to be responsible about their sexuality. And I believe it is past time for us to educate them also about death, an equally important stage of life, and one for which the consequences of poor preparedness are as bad, arguably worse. Ideally this education would come early, well before it’s likely to be needed. I propose that we teach death ed in all of our high schools. I see this curriculum as a civic responsibility. I understand that might sound radical, but bear with me. Why should death be considered more taboo than sex? Both are a natural part of life. We may think death is too scary for kids to talk about, but I believe the consequences of a bad death are far scarier. A death ed program would aim to normalize this passage of life and encourage students to prepare for it, whenever it might come — for them, or for their families.
The children were going to die. Mohamed Bzeek knew that. But in his more than two decades as a foster father, he took them in anyway — the sickest of the sick in Los Angeles County’s sprawling foster care system. He has buried about 10 children. Some died in his arms. Now, Bzeek spends long days and sleepless nights caring for a bedridden 6-year-old foster girl with a rare brain defect. She’s blind and deaf. She has daily seizures. Her arms and legs are paralyzed. Bzeek, a quiet, devout Libyan-born Muslim who lives in Azusa, just wants her to know she’s not alone in this life. “I know she can’t hear, can’t see, but I always talk to her,” he said. “I’m always holding her, playing with her, touching her. … She has feelings. She has a soul. She’s a human being.”
Gratitude for their lives and positive experiences
Pride in accomplishments
Faith or spirituality
Making changes in order to be more at peace when death comes
Their legacy, or positive contributions to others
Loving and being loved
He emphasizes that these were the topics privately consuming his patients, who had felt unable or unwelcome to discuss the topics with their families and loved ones.
Get professional assistance in coordinating care by finding geriatric care managers and doctors specializing in dementia.
Locate adult day care services (where you take your parent for a period of time) or respite care services (people who come into the home). Investigate the memory care facilities in the area, so you know what is available and what costs are involved if it becomes necessary to move your parent.
Think about your social networks. Are there people, perhaps at your place of worship or in your mom’s friendship circle, who can help with errands, meals, home maintenance tasks and other necessities?
Look for support groups. Caring for a family member with Alzheimer’s is demanding, exhausting and eventually all-consuming. It can be a tremendous benefit to talk with others in the same situation.
At the same time, start gathering your parent’s important documents and data, including things such as:
certificates of birth, marriage and divorce
last will and testament
health care directives
power of attorney papers
Social Security number
car title and keys
home deed or mortgage papers
all personal and property insurance policies
pension and/or 401(k) account information;
names of service professionals (banker, lawyer, estate planning attorney, financial adviser, insurance agent, doctors, etc.)
Ensure you also know passwords to parent’s computer, cell phone and all online and social media accounts. Keep all these in a secure and centralized location.
"1. There is no correct way to grieve. Despite turning to elicit drug abuse, alcoholism, or any other addiction that puts ones personal safety in danger, no one can tell you how to grieve. Sure there are thousands of therapists and counselors, even many more thousands of self-help books, the personal accounts and suggestions of others, and the list goes on...but the way you will end up grieving the passing of your child is entirely up to you. 2. Grieving is not something negative. Not only is it not a negative, but it is healthy. It shows that you have loved your child is such a way that no one else could. Grief doesn’t always come out all at once, in fact it usually comes out in bit by bit when certain moments, songs, smells, memories, and even just hearing their name triggers it. It’s okay to take that moment to feel that pain all over again. Try to appreciate those moments. 3. Home is not a location, or even an address. Many of you reading this your home wasn’t one particular place, in fact, home was found wherever you felt the safest, the place that brings to surface the emotions you’ve buried, and even brings back the memories you may have forgotten. PTSD is real in parents of children with complex medical needs, but as much as the hospital setting triggers those emotions, it is also the place many call home. The memories are bittersweet, the emotions are real and very raw, but within those walls were also some of your greatest victories."What I've Learned From Grieving Parents | The Huffington Post
Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honor. Is the shepherd not joyful beneath his trembling, that he shall wear the mark of the king? Yet is he not more mindful of his trembling? For what is it to die but to stand naked in the wind and to melt into the sun? And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered? Only when you drink from the river of silence shall you indeed sing. And when you have reached the mountain top, then you shall begin to climb. And when the earth shall claim your limbs, then shall you truly dance.From The Prophet by Kahlil Gibran"