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Struggling to die in peace:

A family fights to turn off a pacemaker

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible.

By Jennifer Friedlin

For the past month, my mother and I have been advocating for the deactivation of my father’s pacemaker. Yet despite my parents having taken every measure to ensure that they would control the ends of their lives, two months since a severe stroke destroyed whatever quality of life my father, who was already suffering from advanced dementia, had left, his heart continues to beat against my family’s wishes.

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible. Reaffirmed last year, the statement says, “Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.”

Nevertheless, the team of medical professionals at Parker Jewish Institute for Health Care and Rehabilitation has given us the runaround. Most recently, my mother and I met with my father’s team of medical professionals to discuss moving my father into hospice as well as deactivating the pacemaker so that my father could live out his days naturally. During the course of the meeting, my mother, who is my father’s proxy, made clear that this would be my father’s wish.

According to the law, the request is my mother’s prerogative. In 1990, in Cruzan vs. Director, Missouri Department of Health, the Supreme Court ruled that a competent patient could refuse life-sustaining treatments, including nutrition and hydration. This case gave rise to advance directives so that a proxy could carry out the patient’s will. In a later case, the Court affirmed the right of competent patients to refuse therapy.

The medical team agreed to hospice, but has so far refused to carry out the request to deactivate the pacemaker. We have had several long conversations with the medical team, and, while they seem to agree with our desire to give my father a dignified end, they offer confusing explanations as to why they will not carry out my dad’s wishes.

At one point, a staff member told me that because a pacemaker does not prolong life, we should leave it. But my father’s pacemaker is working 53% of the time to correct his condition, known as bradycardia, which can result in heart failure. I fail to see how this device is not prolonging my father’s life or, at the very least, interrupting the possibility for his natural demise.

We are certainly not the first family to confront the medical community’s refusal to deactivate a pacemaker. Katy Butler, author of “The Art of Dying Well,” has written extensively about her efforts to give her father the death he wanted by deactivating his pacemaker. Butler also uncovered other horrors, such as cardiologists recommending pacemakers for elderly people with advanced dementia.

Much of the motivation, Butler noted, seemed to stem from the financial rewards of treating people, even the terminally ill. Simply put there’s no money in death. And yet in its current design, at $450 a day for room and board alone, institutions like the Parker Institute rake in millions annually from people whose lives are being maintained artificially. The medical system could quite literally bankrupt healthy family members to keep a dying one alive.

Although estimates vary, each year approximately 400,000 people — half over age 75 — get implantable cardiac devices, including pacemakers. Primary care doctors, cardiologists, and elder care attorneys should inform people about how these devices can affect their end of life and encourage them to include their wishes in advance directives.

Yet, even if they do, they may hit the same wall of refusal my family has faced. It seems that despite the legal rulings and the ethicists’ writings, doctors are committed to keeping pacemakers ticking.

It’s unfair to the terminally ill and their families that this view prevails. The refusal to deactivate means the sick family member is denied a dignified death, while the need for constant advocacy leaves family members feeling like they are making an unseemly demand.

As the debate about healthcare builds in the run up to the 2020 presidential election, I hope that the candidates will discuss reforms to improve end of life care. There should be dignity in death for the terminally ill and no healthy person should be forced into bankruptcy to keep a loved one alive against his or her will. There are certain people we should spare no expense to keep alive, in our family’s opinion my father is not one of them.

Complete Article ↪HERE↩!

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Apes and Monkeys Have an Awareness of Death

Performing Grieving Rituals and Mourning the Deceased, Study Suggests

By

Researchers say non-human primates exhibit an awareness of death.

Non-human primates like monkeys and apes appear to have an awareness of death in the same way humans do, scientists have said. After analyzing over 200 years worth of research into how primates deal with death, they found common behaviors emerged—including carrying their dead, defending the deceased from threats and exhibiting a grief-like response.

There are many stories about apes and monkeys grieving for their dead. For example, a BBC documentary in 2017 appeared to show a group of langur monkeys grieving for what they believe is a dead baby—even though it was actually just a robotic spy monkey.

The same year, scientists observed a chimpanzee using tools to clean the body of a deceased group member. A female sat down with the dead male and used a firm stem of grass to clean his teeth. The practice, researchers say, suggests chimps may have a more sophisticated response to death than we currently know.

Andre Gonçalves from Japan’s Kyoto University and Susana Carvalho from the University of Oxford in the U.K. say there is a huge amount of anecdotal evidence relating to they way non-human primates deal with death—but a review of the literature to find specific characteristics and behaviors has been lacking.

“For the past two centuries, non-human primates have been reported to inspect, protect, retrieve, carry or drag the dead bodies of their conspecifics and, for nearly the same amount of time, sparse scientific attention has been paid to such behaviours,” they wrote in a study published in Biological Reviews.

In their analysis of 240 reports, Gonçalves and Carvalho showed that specific responses emerge among different non-human primate species. Often this involves carrying the dead around—especially mothers and their dead babies. Species that are unable to grasp objects—such as lemurs and tamarins—are observed trying to carry their dead even though they lack the ability.

A chimp cleaning the teeth of a deceased group member.

They also found that group members defend the bodies of the deceased and returning to the body or site of death: “Such places may hold residual information about the event which can arouse curiosity or emotional distress,” they wrote. This behavior tended to happen when an adult died, rather than a juvenile. The researchers speculate this could relate to attachments, with members needing to re-categorize from living to dead—a behavior they say is essential to the grieving process.

In one anecdote about a family of chimpanzees studied by Jane Goodall, a mother named Flo died before her son Flint had become fully independent. After her death, Flint would stare at the nest they shared and returned to the site of her death. He exhibited signs of clinical depression and stopped eating and interacting with other group members. Eventually his immune system became too weak and he also died.

In another case, an adult male howler monkey was observed staying close to the corpse of a female for five days after her death, “suggesting close proximity between these individuals in life.”

“Considering all these findings and given their cognitive abilities, we argue that non-human primates are capable of an implicit awareness of death,” Gonçalves and Carvalho wrote.

They say more research will be needed to confirm whether non-human primates are aware of death—and to what extent they are. “It’s not an all-or-nothing ability,” Gonçalves said in a statement. “Awareness of death includes things such as animate/inanimate distinction, or the sensory and contextual discrimination of living/dead. The concept of death is something we humans acquire between ages three to 10. We can infer that non-human primates have some aspects of death awareness but, thus far, only humans conceptualize it at a higher order.”

The researchers also say further investigation could help shed light on the evolution of our own funeral practices: “Given that there exists a considerable gap in the fossil and archaeological record concerning how early hominins might have interacted with their dead, extant primates may provide valuable insight into how and in which contexts thanatological behaviours would have occurred.”

Complete Article ↪HERE↩!

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What to Know When Choosing Cremation

By Ann Carrns

Americans are increasingly choosing cremation over burial, making it the new norm for end-of-life practices, a funeral industry report finds.

Demand for cremation — the disposal of a body using flame or heat — continues to outpace that for traditional burial, says the National Funeral Directors Association’s 2019 report on cremation and burial. The cremation rate surpassed 50 percent in 2016 and continues to increase, the association found. It is expected to rise to 79 percent by 2040.

The burial rate, meanwhile, is projected to drop to just 16 percent over the next two decades, which means that cremation “is no fading trend,” the association concluded.

Cremation is growing in popularity for several reasons, including cost, the association found. The median cost of a basic cremation — without visiting hours, a memorial service or any other trappings of a traditional burial — is about $2,400. By comparison, the median cost of a burial with a coffin and full funeral home services is about $7,400.

Cremation has generally become more culturally acceptable. The association’s research found that the proportion of people age 40 and older who feel it is important to have a religious aspect as part of a funeral has declined, to 35 percent in 2019 from about half in 2012.

As cremation becomes more popular, more funeral homes are starting to offer it, said Kurt Soffe, a funeral director in Murray, Utah, and a volunteer spokesman for the funeral directors association. Mr. Soffe said his funeral home has offered cremation since 2002. The association says about one-third of funeral homes now run their own cremation equipment, and more are expected to do so in the next five years to meet demand.

Options other than standard cremation are also starting to emerge. Twenty states now permit a process called alkaline hydrolysis, according to the Cremation Association of North America, but its availability is still somewhat limited. Sometimes called “flameless” cremation, the process uses a mixture of pressurized water and chemicals to dissolve the body.

And Washington State recently approved legislation allowing “above ground decomposition,” or composting, of human remains. The resulting soil will be returned to families, just as ashes may be returned after cremation. A company called Recompose is expected to begin offering the service in Washington as soon as next year.

As cremation and other alternatives eclipse traditional burials and funeral services, funeral homes are becoming more flexible in their offerings to remain competitive. Mr. Soffe said his funeral home, for example, had arranged a service for a man who had been a Harley-Davidson enthusiast. Before the cremation, Mr. Soffe said, the man’s body was displayed for viewing dressed in his motorcycle gear.

Here are some questions and answers about cremation:

What does the price of a cremation include?

A basic cremation — called “direct” cremation by funeral homes — generally includes pickup and transportation of the body, filing necessary paperwork, the actual cremation and the return of the ashes to the family, said Joshua Slocum, executive director with the Funeral Consumers Alliance, a nonprofit advocacy group.

Some funeral homes have their own cremation equipment, but others use outside contractors. If an outside provider is used, Mr. Slocum said, consumers should be careful to review the fees to be sure they are not charged twice for similar services.

Rates vary by location, he said, but a reasonable rate for a direct cremation is $800 to $1,200.

Don’t be pressured to buy a coffin. There’s no need for one if someone is being cremated, AARP advises.

The Federal Trade Commission says that no state or local law requires the use of a coffin for cremation and that the funeral home must inform you that alternative containers — such as those made of unfinished wood or even cardboard — are available.

Must I hold a memorial service before or after a cremation?

No. Add-ons like visiting hours or a memorial service are entirely up to you. “You can do everything, or nothing, before the cremation,” Mr. Slocum said. Families sometimes organize their own informal memorial gatherings after the cremation without involving a funeral home.

Are cremation prices available online?

The federal Funeral Rule requires funeral homes to provide prices for all services, including cremation, upon request by telephone or in person. But the rule, which took effect in 1984, doesn’t address online pricing. Consumer advocates are pushing for the rule to be updated to require funeral homes to post their price lists online.

The F.T.C., which enforces the rule, was scheduled to review it this year, but whether that will happen is unclear. Earlier this year, the commission said that the 10-year review period it uses was not mandatory, and the commission could change timelines if it chooses.

A commission spokesman didn’t respond to a request for an update on the review’s status.

One state, California, requires funeral homes with websites to include pricing information online, or to list services and note that prices are available upon request.

Complete Article ↪HERE↩!

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What People Actually Say Before They Die

Insights into the little-studied realm of last words.

By Michael Erard

Mort Felix liked to say that his name, when read as two Latin words, meant “happy death.” When he was sick with the flu, he used to jokingly remind his wife, Susan, that he wanted Beethoven’s “Ode to Joy” played at his deathbed. But when his life’s end arrived at the age of 77, he lay in his study in his Berkeley, California, home, his body besieged by cancer and his consciousness cradled in morphine, uninterested in music and refusing food as he dwindled away over three weeks in 2012. “Enough,” he told Susan. “Thank you, and I love you, and enough.” When she came downstairs the next morning, she found Felix dead.

During those three weeks, Felix had talked. He was a clinical psychologist who had also spent a lifetime writing poetry, and though his end-of-life speech often didn’t make sense, it seemed to draw from his attention to language. “There’s so much so in sorrow,” he said at one point. “Let me down from here,” he said at another. “I’ve lost my modality.” To the surprise of his family members, the lifelong atheist also began hallucinating angels and complaining about the crowded room—even though no one was there.

Felix’s 53-year-old daughter, Lisa Smartt, kept track of his utterances, writing them down as she sat at his bedside in those final days. Smartt majored in linguistics at UC Berkeley in the 1980s and built a career teaching adults to read and write. Transcribing Felix’s ramblings was a sort of coping mechanism for her, she says. Something of a poet herself (as a child, she sold poems, three for a penny, like other children sold lemonade), she appreciated his unmoored syntax and surreal imagery. Smartt also wondered whether her notes had any scientific value, and eventually she wrote a book, Words on the Threshold, published in early 2017, about the linguistic patterns in 2,000 utterances from 181 dying people, including her father.

Despite the limitations of this book, it’s unique—it’s the only published work I could find when I tried to satisfy my curiosity about how people really talk when they die. I knew about collections of “last words,” eloquent and enunciated, but these can’t literally show the linguistic abilities of the dying. It turns out that vanishingly few have ever examined these actual linguistic patterns, and to find any sort of rigor, one has to go back to 1921, to the work of the American anthropologist Arthur MacDonald.

To assess people’s “mental condition just before death,” MacDonald mined last-word anthologies, the only linguistic corpus then available, dividing people into 10 occupational categories (statesmen, philosophers, poets, etc.) and coding their last words as sarcastic, jocose, contented, and so forth. MacDonald found that military men had the “relatively highest number of requests, directions, or admonitions,” while philosophers (who included mathematicians and educators) had the most “questions, answers, and exclamations.” The religious and royalty used the most words to express contentment or discontentment, while the artists and scientists used the fewest.

MacDonald’s work “seems to be the only attempt to evaluate last words by quantifying them, and the results are curious,” wrote the German scholar Karl Guthke in his book Last Words, on Western culture’s long fascination with them. Mainly, MacDonald’s work shows that we need better data about verbal and nonverbal abilities at the end of life. One point that Guthke makes repeatedly is that last words, as anthologized in multiple languages since the 17th century, are artifacts of an era’s concerns and fascinations about death, not “historical facts of documentary status.” They can tell us little about a dying person’s actual ability to communicate.

Some contemporary approaches move beyond the oratorical monologues of yore and focus on emotions and relationships. Books such as Final Gifts, published in 1992 by the hospice nurses Maggie Callanan and Patricia Kelley, and Final Conversations, published in 2007 by Maureen Keeley, a Texas State University communications-studies scholar, and Julie Yingling, professor emerita at Humboldt State University, aim to sharpen the skills of the living for having important, meaningful conversations with the dying. Previous centuries’ focus on last words has ceded space to the contemporary focus on last conversations and even nonverbal interactions. “As the person gets weaker and sleepier, communication with others often becomes more subtle,” Callanan and Kelley write. “Even when people are too weak to speak, or have lost consciousness, they can hear; hearing is the last sense to fade.”

I spoke to Maureen Keeley shortly after the death of George H. W. Bush, whose last words (“I love you, too,” he reportedly told his son, George W. Bush) were widely reported in the media, but she said they should properly be seen in the context of a conversation (“I love you,” the son had said first) as well as all the prior conversations with family members leading up to that point.

At the end of life, Keeley says, the majority of interactions will be nonverbal as the body shuts down and the person lacks the physical strength, and often even the lung capacity, for long utterances. “People will whisper, and they’ll be brief, single words—that’s all they have energy for,” Keeley said. Medications limit communication. So does dry mouth and lack of dentures. She also noted that family members often take advantage of a patient’s comatose state to speak their piece, when the dying person cannot interrupt or object.

Many people die in such silence, particularly if they have advanced dementia or Alzheimer’s that robbed them of language years earlier. For those who do speak, it seems their vernacular is often banal. From a doctor I heard that people often say, “Oh fuck, oh fuck.” Often it’s the names of wives, husbands, children. “A nurse from the hospice told me that the last words of dying men often resembled each other,” wrote Hajo Schumacher in a September essay in Der Spiegel. “Almost everyone is calling for ‘Mommy’ or ‘Mama’ with the last breath.”

It’s still the interactions that fascinate me, partly because their subtle interpersonal textures are lost when they’re written down. A linguist friend of mine, sitting with his dying grandmother, spoke her name. Her eyes opened, she looked at him, and died. What that plain description omits is how he paused when he described the sequence to me, and how his eyes quivered.

But there are no descriptions of the basics of last words or last interactions in the scientific literature. The most linguistic detail exists about delirium, which involves a loss of consciousness, the inability to find words, restlessness, and a withdrawal from social interaction. Delirium strikes people of all ages after surgery and is also common at the end of life, a frequent sign of dehydration and over-sedation. Delirium is so frequent then, wrote the New Zealand psychiatrist Sandy McLeod, that “it may even be regarded as exceptional for patients to remain mentally clear throughout the final stages of malignant illness.” About half of people who recover from postoperative delirium recall the disorienting, fearful experience. In a Swedish study, one patient recalled that “I certainly was somewhat tired after the operation and everything … and I did not know where I was. I thought it became like misty, in some way … the outlines were sort of fuzzy.” How many people are in a similar state as they approach death? We can only guess.

We have a rich picture of the beginnings of language, thanks to decades of scientific research with children, infants, and even babies in the womb. But if you wanted to know how language ends in the dying, there’s next to nothing to look up, only firsthand knowledge gained painfully.

After her father died, Lisa Smartt was left with endless questions about what she had heard him say, and she approached graduate schools, proposing to study last words academically. After being rebuffed, she began interviewing family members and medical staff on her own. That led her to collaborate with Raymond Moody Jr., the Virginia-born psychiatrist best known for his work on “near-death experiences” in a 1975 best-selling book, Life After Life. He has long been interested in what he calls “peri-mortal nonsense” and helped Smartt with the work that became Words on the Threshold, based on her father’s utterances as well as ones she’d collected via a website she called the Final Words Project.

One common pattern she noted was that when her father, Felix, used pronouns such as it and this, they didn’t clearly refer to anything. One time he said, “I want to pull these down to earth somehow … I really don’t know … no more earth binding.” What did these refer to? His sense of his body in space seemed to be shifting. “I got to go down there. I have to go down,” he said, even though there was nothing below him.

He also repeated words and phrases, often ones that made no sense. “The green dimension! The green dimension!” (Repetition is common in the speech of people with dementia and also those who are delirious.) Smartt found that repetitions often expressed themes such as gratitude and resistance to death. But there were also unexpected motifs, such as circles, numbers, and motion. “I’ve got to get off, get off! Off of this life,” Felix had said.

Smartt says she’s been most surprised by narratives in people’s speech that seem to unfold, piecemeal, over days. Early on, one man talked about a train stuck at a station, then days later referred to the repaired train, and then weeks later to how the train was moving northward.

“If you just walk through the room and you heard your loved one talk about ‘Oh, there’s a boxing champion standing by my bed,’ that just sounds like some kind of hallucination,” Smartt says. “But if you see over time that that person has been talking about the boxing champion and having him wearing that, or doing this, you think, Wow, there’s this narrative going on.” She imagines that tracking these story lines could be clinically useful, particularly as the stories moved toward resolution, which might reflect a person’s sense of the impending end.

In Final Gifts, the hospice nurses Callanan and Kelley note that “the dying often use the metaphor of travel to alert those around them that it is time for them to die.” They quote a 17-year-old, dying of cancer, distraught because she can’t find the map. “If I could find the map, I could go home! Where’s the map? I want to go home!” Smartt noted such journey metaphors as well, though she writes that dying people seem to get more metaphorical in general. (However, people with dementia and Alzheimer’s have difficulty understanding figurative language, and anthropologists who study dying in other cultures told me that journey metaphors aren’t prevalent everywhere.)

Even basic descriptions of language at the end of life would not only advance linguistic understanding but also provide a host of benefits to those who work with the dying, and to the dying themselves. Experts told me that a more detailed road map of changes could help counter people’s fear of death and provide them with some sense of control. It could also offer insight into how to communicate better with the dying. Differences in cultural metaphors could be included in training for hospice nurses who may not share the same cultural frame as their patients.

End-of-life communication will only become more relevant as life lengthens and deaths happen more frequently in institutions. Most people in developed countries won’t die as quickly and abruptly as their ancestors did. Thanks to medical advances and preventive care, a majority of people will likely die from either some sort of cancer, some sort of organ disease (foremost being cardiovascular disease), or simply advanced age. Those deaths will often be long and slow, and will likely take place in hospitals, hospices, or nursing homes overseen by teams of medical experts. And people can participate in decisions about their care only while they are able to communicate. More knowledge about how language ends and how the dying communicate would give patients more agency for a longer period of time.

But studying language and interaction at the end of life remains a challenge, because of cultural taboos about death and ethical concerns about having scientists at a dying person’s bedside. Experts also pointed out to me that each death is unique, which presents a variability that science has difficulty grappling with.

And in the health-care realm, the priorities are defined by doctors. “I think that work that is more squarely focused on describing communication patterns and behaviors is much harder to get funded because agencies like NCI prioritize research that directly reduces suffering from cancer, such as interventions to improve palliative-care communication,” says Wen-ying Sylvia Chou, a program director in the Behavioral Research Program at the National Cancer Institute of the National Institutes of Health, who oversees funding on patient-doctor communication at the end of life.

Despite the faults of Smartt’s book (it doesn’t control for things such as medication, for one thing, and it’s colored by an interest in the afterlife), it takes a big step toward building a corpus of data and looking for patterns. This is the same first step that child-language studies took in its early days. That field didn’t take off until natural historians of the 19th century, most notably Charles Darwin, began writing down things their children said and did. (In 1877, Darwin published a biographical sketch about his son, William, noting his first word: mum.) Such “diary studies,” as they were called, eventually led to a more systematic approach, and early child-language research has itself moved away from solely studying first words.

“Famous last words” are the cornerstone of a romantic vision of death—one that falsely promises a final burst of lucidity and meaning before a person passes. “The process of dying is still very profound, but it’s a very different kind of profoundness,” says Bob Parker, the chief compliance officer of the home health agency Intrepid USA. “Last words—it doesn’t happen like the movies. That’s not how patients die.” We are beginning to understand that final interactions, if they happen at all, will look and sound very different.

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5 Lifesaving Tips for Suicide Loss Survivors

By R. Jade McAuliffe

As a trauma and traumatic loss survivor I’ve spent a lot of time grieving, but nothing could’ve prepared me for the fallout following my sister’s suicide.

I struggled to stay alive inside that desolate grief space, even after surviving two suicide attempts of my own and twice witnessing the wreckage of both my sisters’ traumatic and unexpected deaths.

After all I’d put my family through in the past and everything I’ve experienced since, how in the world could I consider checking out… again?

It was the pain. 

Within seven months of my sister’s suicide, my marriage dissolved and I was once again a single parent.

To make matters worse, I had to draft and file the paperwork myself because we couldn’t afford attorneys. This was my lowest point and, for awhile, I feared might have a nervous breakdown or end up hospitalized.

I didn’t, though. I forged on, one moment at a time, and cared for my kids as best I could and vowed to honor myself and the pain of the loss, in every way possible

The following are five tips which saved my sanity and, very possibly, my life.

I hope some of these support you as well.

1. People won’t know how to support you. Always validate yourself.

Platitudes. Oh, the platitudes…

People fear grief and loss, so when approaching someone in significant pain, they often fumble in their attempts to offer helpful consolidation.

To make matters worse, suicide is still stigmatized, so survivors are often guilted, blamed or shamed for their losses, either overtly or covertly.

This, of course, only adds insult to injury and is completely unfair. Unfortunately, it tends to be the norm for suicide loss survivors, so make a promise to yourself: Grieve authentically, in spite of ignorance, and don’t allow anyone to judge or dictate when your time of mourning “should” be over (especially you).

Grief, when honored and companioned, can actually bring lost loved ones closer, and validating your own experience is the first step to empowerment.

You aren’t to blame for your loss, and you don’t ever have to “let go” of or “get over” it either. You likely won’t anyway.

Grief is only proof you dared to love, and love isn’t something from which people “recover.”

Love is yours to keep…
so keep it close, nurture, and cherish it.

Forget about moving on, and concentrate instead on connecting to this love in its new form and, by all means…
take your sweet time.

This isn’t a race and there is no finish line. You’re still in a relationship, albeit a different and altered one. This time, though, you can make it whatever you want it to be.

2. Your body knows how to heal: Follow its lead.

Nobody knows what you need more than you do. You live in your body, and now is the perfect time to gently and mindfully follow its lead.

Grief requires lots of quiet solitude, so use this time to rest and reconnect, with yourself and your lost loved one.

You might need more sleep, or need to nap during the day because you’re unable to sleep at night. Follow your body.

If it wants to sob and shake, don’t resist. If you feel enraged, go ahead and scream, smack a floor pillow with a plastic bat, or throw some old dishes into a garbage can and listen to them shatter. (This is strangely satisfying.)

Honor your body’s specific requests.
It knows exactly what it’s doing, and it will lead you, slowly and eventually, to a place of healing and relief.

Be sure to eat (something) throughout the day, and drink a lot of water. Grieving requires stamina and energy, and this will help you go the distance.

3. Silence can be deadly: Grieve out loud.

The more you hold back, push down, or minimize your grief, the more you’ll become prone to depression, anxiety, and/or suicidal thoughts.

It isn’t mainstream knowledge, but the people most at risk of attempting suicide are suicide loss survivors trying to navigate the wreckage.

If you’ve made past attempts, lost other family members to suicide, or battle depression or unresolved trauma, you’re at even greater risk, so take this very seriously.

The body desperately needs to express itself and suicide grief hurts. Give yourself permission to mourn like a superhero!

Give voice to the good, the bad, and the ugly, and bring all of your feelings to life. Make them big.

Share them out loud with someone you trust (and also your lost loved one) and/or write them all down on paper, uncensored.

Don’t minimize, hold back, or purposely omit anything. Tell your story and tell it often. Repeatedly hearing your own suicide loss story while communicating the feelings associated with it (especially fear, betrayal, and anger) will eventually help you integrate the loss.

Express yourself creatively if you feel led and your energy allows. Sometimes words alone don’t do our feelings justice.

Get it all out. You feel that internal pull for a good reason. Again, follow the prompts of your body.

4. The grief journey is lonely: Make your connections count.

Unfortunately, suicide grief is heavy and messy, and it’s a road we must ultimately walk alone.

No one can know exactly what you’re going through, and it can been exhausting trying to explain yourself and your feelings to others.

People might drop out of your life after suicide loss, and it isn’t uncommon to lose family members too. Everyone and everything is reorganizing around the loss, and this can be one of the most difficult and painful parts of the grief journey.

Guard your heart and steer clear of people and things which might drain or upset you, especially negative media, toxic people, and anyone who tries to minimize your experience.

Your energy is probably at an all-time low now, and nothing will deplete it faster than exposure to another’s anger, fear mongering, and/or anything even potentially upsetting.

Choose wisely, and spend time with others who accept you and your current reality without trying to rescue or fix it.

You aren’t sick, and you don’t need fixing. You’re grieving, and you only need to be seen, heard, and validated.

Supportive people might be hard to find, but they’re out there. I found many online through coaching and support groups. Be relentless in your search, and connect with those who help you feel safe, accepted, and connected.

Connection is the key to survival.

5. Accept your current reality as much as possible, even though it sucks.

I know the “why’s” are killing you, and you’re beating yourself up for words said and unsaid, missing “the signs,” or not being more supportive.

You did your best in the moment, and beating yourself up won’t bring your loved one back. Trust me, it’s also the quickest route to your own demise. We can’t change the past, no matter how often we replay it.

Your loved one made a split decision and didn’t ask for your permission. You didn’t get to choose or say goodbye.

You’ve been shaken like a snow globe, and now you’re doing all you can to survive this experience. Give yourself a break. Give yourself a lot of breaks.

Don’t expect to keep up with things as you did before your loss. Your body and brain are processing and integrating, and it will take a significant amount of time to feel any sense of normalcy again.

Go easy, and above all else, let go of anything not completely necessary for survival. (The cleaning? It can wait.)

I know it’s difficult, but ask for help with chores you can’t do now. Solicit child care so you can have blocks of time when nobody needs you. (Schools, churches, and work friends might know of people who can help.)

Give yourself permission to grieve, in your own way, and for however long it takes.
You didn’t ask for this and you didn’t deserve it either.

You deserve to live the rest of this life on your own terms and in your own way.

You get to decide now what that life will look like going forward.

I know our experiences are different and if you’ve lost a parent, child, or spouse, my pain in no way rivals yours. I get that.

Still, within this vast and lonely wilderness, I hope you feel a quiet kinship anyway and know, without a shadow of a doubt…

you always have a silent partner in me.

Complete Article ↪HERE↩!

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Scared of death?

An end-of-life coach might be the answer

By

You may be familiar with birth doulas. These coaches, or “birth companions” assist pregnant women through the delivery of their child and postpartum recovery. They’re not OBGYNs, but they are highly trained in how to offer emotional and physical support and guidance to a mother.

Sound nice? Plenty of moms-to-be think so, and the doula movement has been growing steadily over the past couple of years. Now people on the other side of the life spectrum can contact doulas as well to quell fears about dying and ease their transition.

In order to decide if an end-of-life doula is right for you, it’s first important to understand what exactly they are, and what they’re not.

First off: The preferred term is, in fact, end-of-life doula, rather than “death doula.” Death doula admittedly has an intriguingly spooky, cultish air about it, but it tends to perpetuate negative misinformation about the role, like the idea that these doulas assist in administering lethal injections. And in order to bring awareness to any movement or group, it helps to consistently use the same terms.

To find out more, Considerable spoke with Deanna Cochran, founder of Quality of Life Care and one of the founding directors of the National End-of-Life Doula Alliance. 

“I’ve been doing this since 2005, before there was a death-positive movement at all,” Cochran said. “What was going on was a scattering around the world … I found them when I began blogging in 2006 as a private end-of-life doula.

“I thought I was going to cause a scene doing what I was doing … I wanted everyone to know that you can have this medicine, these treatments, this therapy long before you’re sent to hospice. Nobody wants to admit they’re dying, but then people have miserable experiences dying because they’re not getting palliative care.”

So what exactly is an end-of-life doula, and how are they different from, say, a hospice nurse or in-home caregiver?

Cochran described an end-of-life doula as “a person who accompanies another through dying and death — holistic, nonmedical, practical support.”

Doulas don’t exist separately from hospice care. In many cases, end-of-life doulas work in conjunction with hospices to provide an overarching holistic experience.

“End-of-life doulas accompany hospice,” Cochran explained. “Hospice is fantastic, but the problem is they don’t have the kind of time that might be needed. Nurses can’t stay with a patient for hours and hours — sometimes the hospice would like more support for the patient but the hospice doesn’t always have the volunteers available.”

“[Think of a doula] kind of like a firefighter; the doulas understand that you never know when vigils or a high-need situation is going to happen, and they’re willing to go out there in the crisis situations. Hospice volunteers are not expected to tend to crises; they’ve planned their volunteer schedule. The doula team is that kind of team within hospice.

“We’re like mediators or advocates; we’re not advocating for the family against the system — we’re advocating for the family and the system.”

In many ways, doulas act as a bridge between the other care services end-of-life patients will receive. 

“Information gets lost between nursing home, hospital, and rehab. Medications get lost along the way, people aren’t getting informed, so a doula can make sure everyone’s informed all along the way,” Cochran said. “At death the [hospice care] team is gone; bereavement is a new team. But a doula is entered into the system before death, during, and after, during bereavement. They offer an extra layer of support not just for the family, but for the hospice team. Extra expertise, extra training, and they know their place alongside hospice. It’s not a different agenda.”

Doulas are trained to assist both the dying patient and their loved ones through all stages of death, something that most hospitals and hospices don’t supply. They have to be incredibly empathetic and ready to jump in with an appropriate care response in all manner of situations.

“[Doulas] have to be OK being a witness and not a savior; a companion, not a leader. They have to come in with curiosity, not a plan. They have to be very self-aware,” Cochran told Considerable.

Death and the dying process is a sensitive, tricky subject, and some misconceptions about end-of-life doulas have arisen as a result. Doulas are often referred to as spiritual, and their approach to help and healing has spiritual elements. “Spiritual is a term that especially means vastly different things to different people, and some patients may feel concerned by that definition.

“Doulas are not trying to replace the [hospice] chaplins by providing spiritual care. Just by being present, that’s spiritually supportive,” Cochran explained.

And, especially importantly: “We are not euthanizers! There was an ugly article insinuating that death doulas ‘do the final thing’ … Absolutely not. That has nothing to do with us. We would never be responsible for the final medication in any assisted death. That’s not our role.”

Cochran also mentioned that doulas are especially important these days because the way we die has changed. 

“We’re living with chronic illnesses for a long time. Modern marvels are promising to keep us alive; we’ve never died like this before, of course people are scared.”

By becoming aware of the dying process sooner, and as medical science keeps terminally ill patients alive for longer than these diseases used to allow, patients have more time to contemplate death and face the reality of what the end of their life will entail.

“In advanced illness, everyone in the care system is focusing on life, even in the face of dying,” Cochran said. “Let’s start having gentle, realistic conversations that this train isn’t going backwards. Let’s focus on excellent symptom management and care for the whole family to support you as best as possible and not traumatize you through a system that’s trying to turn you around when you’re not going to.”

To find out more about end-of-life doulas, and where to find one in your area, check out NEDA’s website.

Complete Article ↪HERE↩!

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Moving Forward After the One You Cared For Dies

Grieving caregivers typically face a challenging mix of emotions

By Julie Gorges

As anyone who has had a loved one die knows, grieving is a heartbreaking journey. When you’re a caregiver and the person you’ve been caring for dies, experts on grieving agree the psychological outcome and healing process are somewhat different. That’s especially true if your loved one had dementia.

I was the primary caregiver for my mother, who had Lewy Body dementia during the last years of her life. I learned that grief takes many forms, and it isn’t just about mourning someone after they die. When your loved one has dementia, you lose that person in an excruciating way — a little bit at a time. As a result, some of the grieving process begins to take place while you’re still caregiving.

After my mother died, I not only lost her, but part of my identity as a caregiver. My life had changed drastically overnight.

Other complicated feelings often come into play. “After caregivers lose the person they cared for, there is often less grief alone, but a mixture of other emotions,” explains Dr. Marc Agronin, a geriatric psychiatrist and author of The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer’s Disease and Other Neurocognitive Disorders. “Those feelings may include sadness and uncertainty about the future, along with some degree of relief and a desire to move forward.”

After a Death: A Mix of Emotions

This was certainly true in my case. After my mother’s death, the emotions were overwhelming. I was relieved all of my heartbreaking duties as a caregiver were over. No more medical emergencies, constant worrying and sleepless nights. I also enjoyed my newfound freedom to take a vacation, go on a leisurely walk, spend quiet time with my husband or simply enjoy a book.

But there was a lot of guilt mixed in for feeling that way. I also felt remorse about the times I wasn’t the perfect caregiver and questioned whether I made the right decisions along the way.

On top of that, I felt lost. Caring for Mom had been my life for a few years. Most of my thoughts and feelings had revolved around her care. After my mother died, I not only lost her, but part of my identity as a caregiver. My life had changed drastically overnight.

Accept Your Feelings and Move Forward

So, how can you move forward will all the intense and contradictory feelings that come with the territory?

What I learned is that you have to accept all your emotions and be patient with yourself. Feel everything you need to feel. Lean on loved ones. Honestly discuss your thoughts and feelings with those close to you.

However, as time goes on, it’s important not to allow sorrow to become a way of life or dwell on all of the “should-haves” that interfere with recovery. In fact, you’ll need to forgive yourself for mistakes you think were made while caregiving and stop feeling guilty that you’re relieved to have your life back.

The goal is to let go of negative feelings and enjoy a productive life once again.

How is that accomplished?

After my mother’s death, I took an important step that helped me pick up the scattered pieces of my soul and begin living again.

I deemed the year after my mother’s death, my “year of healing” and listed three non-negotiable things I had to do each day. There was nothing new or revolutionary on my list. Just a few simple things that provided an anchor, ensured that I took the time to care and focus on myself and helped me get through a bad day.

My list included:

  • Read something spiritual and inspirational each day. If you’re a religious person, now is the time to embrace your spirituality and rely on your faith to help you move forward. It’s so easy to become sidetracked and allow time to slip by without any spiritual fortification. I realized daily reading, meditation and prayer were necessary every single day.
  • Exercise. I’m not talking about running a marathon or doing 50 deep squats. But, even if it was only for 15 minutes, I did something for both my physical and emotional well-being. Maybe I’d take a stroll through the park listening to the birds sing, do some Pilates or walk the dog around the block listening to soothing music.
  • Do something you love. I thought about what used to make me feel happy and brought fun and joy to my life. Then I made a point of putting those treasured activities back into my daily life. In other words, at the end of the day, I made sure that I did something just for me.

You know what? My list worked. Accomplishing these three things every day helped me feel calmer, more centered and, yes, happier.

I’d recommend making a list of your own. Maybe you’ll include laughing each day, spending time in nature, learning something new, being silly or enjoying time with loved ones.

Helping Others Helps Yourself

Perhaps one of the most important items to put on your list is to perform one simple act of kindness for someone else each day. Compassionate deeds and volunteer work can help you find meaning and purpose again.

“I think focusing on others helps a person to move forward,” says Vicki Tapia, author of Somebody Stole My Iron: A Family Memoir of Dementia and co-founder of AlzAuthors, a website featuring authors who write about their experiences related to Alzheimer’s and other dementias.

Tapia cared for both her parents with dementia before their deaths. “Doing something helpful outside of yourself can often be a balm to the soul, whether it’s lending a listening ear or volunteering to help with a support group for other caregivers,” she says.

Finding a New Perspective on Life

Losing someone you love changes how you look at the world and forces you to acknowledge that life doesn’t last forever. The experience can clarify your priorities and redefine your path. So, embrace the new you and your new life.

“Find a new role that provides meaning and purpose,” suggests Agronin. “This might involve renewed relationships with others, volunteer work, travel or some other pursuit that provides a sense of personal direction.”

Several months after Mom died, my husband and I took an anniversary trip to Chicago. Even though I have a fear of heights, I was determined to sit on one of those scary glass enclosures that jut from the Willis Tower Skydeck, a whopping 103 floors above the city. I had this overwhelming feeling that I had to start living again and this was the first step. So, I bravely forged forward onto the glass and I felt alive, empowered and revitalized.

I have faith that you’ll take that first step too. You will heal, move forward, and rediscover yourself. You will feel happy again. As Martin Luther King Jr. famously said: “Take the first step in faith. You don’t have to see the whole staircase, just take the first step.”

Complete Article ↪HERE↩!