The Art of Dying Well

It’s been nearly two years since Colorado passed the End-of-Life Options Act. How has the controversial law affected Centennial Staters, and how, exactly, does one plan for a good death?

Merely Mortals

This is a story about death.

About how we in the United States—and maybe to a slightly lesser degree, here in Colorado and the West—tend to separate ourselves, emotionally and physically, from both the ugliness and the beauty of our inevitable ends. We don’t like to think about dying. We don’t like to deal with dying. And we certainly don’t like to talk about dying. Maybe that’s because acknowledging that human bodies are ephemeral short-circuits American brains groomed to (illogically) hope for a different outcome. Perhaps it’s also because the moment death becomes part of the public discourse, as it has in the Centennial State over the past several years, things can get uncomfortably personal and wildly contentious.

“As a society, we don’t do a great job of talking about being mortal. My secret hope is that this [new law] prompts talks about all options with dying.”

When Coloradans (with an assist from Compassion & Choices, a national nonprofit committed to expanding end-of-life options) got Proposition 106, aka the Colorado End-of-Life Options Act, on the ballot in 2016, there was plenty of pushback—from the Archdiocese of Denver, advocacy groups for the disabled, hospice directors, hospital administrators, and more physicians than one might think. But on November 8, 64.9 percent of voters OK’d the access-to-medical-aid-in-dying measure, making Colorado the fifth jurisdiction to approve the practice. (Oregon, California, Montana, Washington, Hawaii, Vermont, and Washington, D.C., have or are planning to enact similar laws.) Not everyone was happy, but if there’s one thing both opponents and supporters of the legislation can (mostly) agree on, it’s that the surrounding debate at least got people thinking about a very important part of life: death.

“As a society, we don’t do a great job of talking about being mortal,” says Dr. Dan Handel, a palliative medicine physician and the director of the medical-aid-in-dying service at Denver Health. “My secret hope is that this [new law] prompts talks about all options with dying.” We want to help get those conversations started. In the following pages, we explore everything from how to access the rights afforded in the Colorado End-of-Life Options Act to how we should reshape the ways we think about, plan for, and manage death. Why? “We’re all going to die,” says Dr. Cory Carroll, a Fort Collins family practice physician. “But in America, we have no idea what death is.” Our goal is to help you plan for a good death—whatever that means to you.

Death’s Having a Moment

Colorado’s end-of-life options legislation isn’t the only way in which Coloradans are taking charge of their own deaths. Some Centennial Staters have begun contemplating their ends with the help of death doulas. —Meghan Rabbitt

As the nation’s baby boomers age, our country is approaching a new milestone: more gravestones. Over the next few decades, deaths in America are projected to hit a historic high—more than 3.6 million by 2037, which is one million more RIPs than in 2015, according to the U.S. Census Bureau. Here in Colorado, home to Boulder’s Conscious Dying Institute, there are a growing number of “death doulas” trained to help us cross over on our own terms.

Death doulas offer planning and emotional support to the dying and their loved ones, and since 2013, the Conscious Dying Institute has trained more than 750. Unlike doctors, nurses, hospice workers, and other palliative-care practitioners who treat the dying, death doulas don’t play a medical role. In much the same way that birth doulas help pregnant women develop and stick to birth plans, death doulas help their clients come up with arrangements for how they want to exit this life. That might mean talking about what projects feel important to finish (like writing that book) or helping someone make amends with estranged family members or friends or determining how much medication someone wants administered at the end. “When people are dying, they want to be heard,” says Nicole Matarazzo, a Boulder-based death doula. “If a doula is present, she’ll be able to fully show up for the person who’s dying—and model that presence for family members.”

Over the past year, the Conscious Dying Institute has seen a noticeable jump in the number of Coloradans using its directory of doulas and inquiring about training. When she started working in end-of-life care in 1998, founder Tarron Estes (pictured) says no one had heard of death doulas. Now she’s getting roughly 25 calls a week. “More people are getting comfortable talking about death,” Estes says. “In cities like Denver, there’s a willingness to talk about topics that are taboo in other areas of the country.” Medical aid in dying is, of course, a prime example.

That embrace of the end might be just another part of what is becoming known as the “death-positive movement.” More than 314,000 people have downloaded a free starter packet from the Conversation Project, a nonprofit that gets people talking about their end-of-life wishes. And more than 6,700 “death cafes,” where people gather to talk about death over tea and cake, have popped up around the nation, including several in Colorado. Ready to make a date with death? The Denver Metro Death Cafe’s next meeting is on October 20.

Knocking On A Death Doula’s Door

What to look for in an end-of-life guide.

1. Ask to see a certificate of education and research the organization that provided the doula’s training. Look for curricula that involve at least some in-person instruction. For example, the Conscious Dying Institute’s eight-day, on-site training portion includes lectures, writing exercises, demonstrations, and partner practices. It’s also split into a three-day session and a five-day session, with a 10-week internship requirement between each on-site phase.

2. Compare fees. Death doulas in Colorado charge about $25 to $125 an hour and may offer a sliding scale based on their clients’ financial means.

3. Pay attention to the doula’s listening skills. The last thing you want as you prepare to cross over is someone who hasn’t been hearing you all along.

Ink Your Legacy

If a good death includes making sure your family is cared for, one of the greatest favors you can do for your loved ones is to provide a clear path to all of your worldly possessions. Putting in the time—and paperwork—to plan for the dissemination of all your stuff can save your family months of headaches, heartaches, and contentious probate battles. Not sure what kind of estate planning documents you need? We spoke with Kevin Millard, a Denver-based estate planning attorney, to help you get started.

If you don’t you care about who gets your stuff…
Great; then you probably don’t need a will. If you don’t have a will, your stuff—cars, jewelry, artwork, etc.—goes to your closest relative(s) under what are known as “intestate succession laws” (the laws that govern how your stuff is divided after your death). The state maintains very specific equations for different scenarios. For instance, if you die with a spouse and children from a previous relationship, your spouse gets the first $150,000 of your intestate property plus half of the remaining balance, and the descendants get everything else. Or, if you die with a spouse and living parents, your partner gets the first $300,000 of your intestate property and three-quarters of anything over that. Your parents get

If you do care about who gets your stuff and some of your “stuff” is minor children…
At the very least, you need a guardian appointment document to determine who will care for your children after your death. Physical custody is different from managing any money you might have set aside for your children. You can name one person to manage the money and another to actually care for your children. Also, if your selected guardian doesn’t live where you do, he or she gets to decide whether or not your kids have to move.

If your most valuable stuff is not really “stuff” at all, but more like life insurance policies, 401(k) plans, bank accounts, etc…
Then you’ve probably already designated who gets what by appointing a beneficiary for those things. Anything with a beneficiary—life insurance policies, payable-upon-death bank accounts, retirement plans, or property held in joint tenancy (e.g., your house)—does not get distributed according to intestate succession laws (the laws that govern how your stuff is divided after your death if you don’t have a will). It goes to the listed beneficiary. However, you might want to consider also designating a durable financial power of attorney to manage all of your accounts in the event you become incapacitated before you die. Ditto for a medical power of attorney.

If your stuff is worth millions…
In addition to a will, you should consider a trust. This can protect your estate from being included in lawsuits if you’re sued, and it can also ease some of the estate tax burden on your heirs. But if you’re worth millions, then you probably already have people on retainer who’ve told you this.

If your stuff isn’t worth millions…
You need a will if you want to make life easier for your heirs. (In Colorado, any estate valued at more than $65,000 must go through probate court—a process that takes many months to finalize because you cannot close an estate here until six months after a death certificate has been issued, which can take several days or even weeks.) The general rule in Colorado is that a will must be signed by two witnesses to be valid. If you go through the trouble of having it notarized, it becomes a self-proving will, which means the court doesn’t have to track down the witnesses to certify its validity. You can also handwrite and sign your will; that’s known as a holographic will and does not require witnesses—but it does come with a lot of hand cramps.

My Father’s Final Gift

When it came to preparing for the end of his life, my father planned for the worst, knowing that would be best for me. —Jerilyn Forsythe

It was June in Arizona, and it was hot inside my dad’s kitchen. The whole place smelled musty, the way old cabins do, and I watched as a swath of sunlight coming through the window illuminated lazy plumes of dust. My thoughts felt as clouded and untethered as the drifting specks. I had flown in from Denver the day before and driven more than 100 miles from Phoenix to collect some of my father’s things and bring them to the hospital, where he lay in a medically induced coma.

It had all happened so fast. I’d received a midnight call from a neurosurgeon in Phoenix—the same one who had done a fairly routine surgery to mend a break in my dad’s cervical spine a few weeks earlier. Somehow, the physician said, my father had accidentally undone the surgery, leaving two screws and a metal plate floating in his neck. The doctor explained that he had operated emergently on my dad, who would be under a heavy fentanyl drip—and a halo—until he stabilized.

Although my parents had been divorced since I was two years old, my mother was there to help me that afternoon in Dad’s cabin. Between coaching me through decisions like which of his T-shirts to pack and whether or not I should bring his reading glasses, she happened upon a navy blue three-ring binder, with a cover page that read “Last Will and Testament, Power of Attorney & Living Will for Larry Forsythe,” in his bedroom.

He had never told me about the binder, but my name graced nearly every page within it. On a durable financial power of attorney. On a durable medical power of attorney. On a living will. And on his last will and testament. My typically nonconformist dad had prepared a collection of legal files that would become my bible in the ensuing months.

During the roughly 16 weeks he was hospitalized, I would reread, reference, fax, scan, copy, and email those documents—particularly the powers of attorney—countless times. I also thought, on nearly as many occasions, how fortunate I was that my dad, who probably struggled to pay for a law firm to draw up the papers, had done so just a year before he was unexpectedly admitted to the hospital. Without his wishes committed to paper, I know I would not have been able to fully and confidently make decisions on his behalf. But, navy blue binder in hand, I was empowered to speak with authority to doctors, nurses, bank executives, and even the cable company, which would not have stopped the monthly payments that were dwindling his already heartbreakingly low bank account had I not been designated his financial power of attorney.

I always thought that having a sick or dying loved one meant hospital visits and flowers and tears—all of which is true—but I spent far more time on the phone with medical professionals, financial institutions, and social workers than I did crying. I imagine all of that strife would have been magnified dramatically had we not found that binder.

My dad died a year ago this month. His passing brought more challenges for me, but for a long time after, I silently thanked him for having the foresight to visit that estate planning law firm, for considering what I’d go through when he was no longer here. It was one of the last—and best—gifts he ever gave me.

Process Oriented

Navigating the myriad steps to legally access medical-aid-in-dying drugs can be an arduous undertaking already. Some obstacles, though, are making it even more frustrating for terminally ill patients and their families.

Step No. 1: Determine Eligibility

For a person to be eligible to receive care under the law, he or she must be 18 years or older; a resident of Colorado; terminally ill with six months or less to live; acting voluntarily; mentally capable of making medical decisions; and physically able to self-administer and ingest the lethal medications. All of these requirements must be documented by the patient and confirmed by the patient’s physician, who must agree to prescribe the medication.

Procedural Glitch: Because the law allows individual physicians to opt out of prescribing medical-aid-in-dying drugs for any reason and because some hospital systems and hospices have—in a potentially illegal move—decided not to allow their doctors to prescribe the meds, it is sometimes difficult for patients to find physicians willing to assist them.

Step No. 2: Present Oral And Written Requests

An individual must ask his or her physician for access to a medical-aid-in-dying prescription a total of three times. Two of the requests must be oral, in person, and separated by 15 days. The third must be written and comply with the conditions set in the law (signed and dated by the patient; signed by two witnesses who attest that the patient is mentally capable of making medical decisions, acting voluntarily, and not being coerced by anyone).
Procedural Glitch: Although mandatory waiting periods are required in all jurisdictions with medical-aid-in-dying laws, these requirements are especially challenging for patients in small towns or rural areas, where there might not be a doctor willing to participate for 100 miles. For terminally ill patients, making two long road trips to present oral requests can be next to impossible.

Step No. 3: Get A Referral To A Consulting Physician

The law requires that once a patient’s attending physician has received the appropriate requests and determined the patient has a terminal illness with a prognosis of less than six months to live, the doctor must refer the patient to another physician, who must agree with the diagnosis and prognosis as well as confirm that the patient is mentally capable, acting voluntarily, and not being coerced.

Procedural Glitch: Once again, difficulties with finding a willing physician can cause lengthy wait times.

Step No. 4: Fill The Prescription At A Pharmacy

Colorado’s medical-aid-in-dying law doesn’t stipulate which drug a physician must prescribe. There are multiple options, which your doctor should discuss with you. Depending on your insurance coverage (Medicare, Medicaid, and many insurance companies do not cover the drugs), as well as which hospital system your doctor works in, getting the medication can be as simple as filling a script for anything else.

Procedural Glitch: Not every hospital system will allow its on-site pharmacies to fill the prescriptions—HealthOne, for example, doesn’t. Corporate pharmacies, like Walgreens, and grocery-store-based pharmacies often will not fill or do not have the capability to fill the prescriptions. What’s more, Colorado pharmacists are able to opt out of filling the prescription for moral or religious reasons. That leaves doctors and patients in search of places to obtain the drugs once all of the other requirements have been fulfilled.

Step No. 5: Self-Administer The Medications

Although the time and place are mostly up to the patient, if he or she does decide to take the life-ending drugs, he or she must be physically able to do so independent of anyone else. Physical capability is something patients must consider, especially if their conditions are progressing quickly and could ultimately render them incapable of, for example, swallowing the medications.

Procedural Glitch: Depending on the drug that is prescribed and the pharmacy that fills it, patients and/or their families are sometimes put in the position of having to prepare the medication before it can be administered. Breaking open 100 tiny pill capsules and pouring the powder into a liquid can be taxing even under less stressful circumstances.

Step No. 6: Wait For The End

In most cases, medical-aid-in-dying patients fall asleep within minutes of drinking the medication and die within one to three hours. The law encourages doctors to tell their patients to have someone present when they ingest the lethal drugs.

Procedural Glitch: Although most doctors who prescribe the medication do not participate in the death, it is worth asking your physician or your hospice care organization in advance about what to do in the minutes immediately after your loved one has died at home, as 78.6 percent of Coloradans who received prescriptions for life-ending meds under the law and subsequently died (whether they ingested the drugs or not) did in 2017. Someone with the correct credentials will need to pronounce death and fill out the form necessary for a death certificate (cause of death is the underlying terminal illness, not death by suicide) before a funeral home can pick up the body.

Who’s In & Who’s Out?

A short breakdown of metro-area hospitals’ and health systems’ stances.

Completely Out
SCL Health
Centura Health
VA Eastern
Colorado Health Care System
Craig Hospital

In, With Caveats
HealthOne
Boulder Community Health

All In
Denver Health
UCHealth
Kaiser Permanente Colorado

Alternative Endings

An Oregon nonprofit is Colorado’s best aid-in-dying resource.

Although Oregon’s Compassion & Choices is best known here as the organization that helped push Proposition 106 onto Colorado’s November 2016 ballot, the nation’s oldest end-of-life-options nonprofit didn’t abandon the Centennial State after the initiative passed. “First, we help states enact the laws,” says Compassion & Choices’ Kat West, “then we stick around to help with implementation and make sure it’s successful.”

In Colorado, the rollout has been fairly fluid. Perfect? Certainly not. Fortunately, Compassion & Choices has been trying to smooth some of the wrinkles in the system. The biggest help so far might be its website. The nonprofit keeps its online content updated with everything a Coloradan needs to know about the state’s End-of-Life Options Act. Of particular note: the Find Care tool, which lists clinics and health systems that have adopted supportive policies, since finding participating physicians, hospitals, and pharmacies is still challenging. “Patients don’t have the time or energy to figure this out on their own,” West says. “We do it for them.”

Hospice Hurdles

Why some local hospices aren’t as involved in Colorado’s aid-in-dying process as you’d expect.

Despite what you might have heard, hospice is not a place where one goes to be euthanized. “That misconception is out there,” says Nate Lamkin, president of Pathways hospice in Northern Colorado. “We don’t want to perpetuate the thought that we’re in the business of putting people down. That’s not what we do.” That long-standing myth of hospice care is, in part, why many Colorado hospices have declined—potentially in violation of state law—to fully participate in the End-of-Life Options Act.

By and large, the mission of hospice—which is not necessarily a place, but a palliative approach to managing life-limiting illness—has always been to relieve patient suffering and to enhance quality of life without hastening or postponing death, Lamkin explains. “This law kind of goes in opposition to that ethos,” he says. To that end, like many other hospices, Pathways has taken a stance of neutrality: Pathways physicians cannot prescribe the life-ending medication, but the staff will support their patients—by attending deaths, by helping with documentation—who choose the option. “We are not participating by not prescribing,” Lamkin says. “But it is the law of the land, and we fully support those who choose medical aid in dying.”

Pathways is not alone in its abridged participation. Other large Front Range hospice care providers, like the Denver Hospice, have also either taken an arm’s-length stance on the practice or opted out entirely. End-of-life options advocacy nonprofit Compassion & Choices regards this as willful noncompliance, which could leave hospice providers exposed to legal action, especially considering that 92.9 percent of Colorado’s patients who died following the reception of a prescription for aid-in-dying meds in 2017 were using hospice care to ameliorate symptoms and make their deaths as comfortable as possible. But, says Compassion & Choices spokesperson Jessie Koerner, when hospices abstain from fully supporting medical aid in dying, it strips away Coloradans’ rights—rights to which the terminally ill are legally entitled.

 

Filling More Than Just Prescriptions

After spending years at a chain pharmacy, Denverite Dan Scales opened his own shop in Uptown so he could better serve his customers. 5280 spoke with him about being one of the few pharmacists in Colorado meeting the needs of medical-aid-in-dying patients.

5280: Of the roughly 70 medical-aid-in-dying prescriptions written in Colorado in 2017, Scales Pharmacy filled approximately 22 of them. Why so many?
Dan Scales: As a pharmacist, you have no obligation to fill a script that’s against your moral code. So there are many pharmacists who won’t fill the drugs. Also, many chain pharmacies—like Walgreens—don’t mix compounds, which means they can’t make the drug cocktail a lot of physicians prescribe. That leaves independent pharmacies like ours.

You don’t have any objections to the state’s End-of-Life Options Act?
I really believe we kinda drop the ball at the end of life. We do a poor job of allowing people to pass with dignity. I won’t lie, though: After filling the first couple of prescriptions, I did feel like I helped kill that person. I needed a drink. But talking with the families after helps.

You follow up with your patients’ families?
Yes. We ask them to call us after their loved one has passed. We want to know how it went, how the drugs worked, how long it took, was everything peaceful? I’d say about 30 percent call us to offer feedback. It helps us know how to better help the next person. You have to understand, this is not a normal prescription; we talk with these people a lot before we even hand them the drugs. We get to know them.

If you could change one thing about the process, what would it be?
It’s frustrating that there’s not more pharmacy participation in our state. We’re having to mail medications to the Western Slope because people can’t find the services they need.

Final Destination

She couldn’t travel with him this time, but a Lakewood woman supported her husband’s decision to go anyway.

They met online, way back in the fuzzy dial-up days of 1999. J and Susan* weren’t old, exactly, but at 50 and 49, respectively, they had both previously been married. They quickly learned they had a lot in common. They were both introverts. Each had an interest in photography. And they loved to travel, especially to far-flung places, like Antarctica. After about two years of dating, they got married in a courthouse in Denver. For the next 17 years, they saw the world together and were, Susan says, “a really great team.”

The team’s toughest test began in fall 2017. Susan says she should’ve known something was wrong when she asked J if he wanted to go on an Asia-Pacific cruise and he balked. Upon reflection, Susan realized J likely hadn’t been feeling well. “That hesitation was a clue,” she says. The diagnosis, which came in January 2018, was a devastating one: stage 3-plus esophageal cancer. It was, as Susan puts it, “a cancer with no happy ending.”

It would also be, Susan knew, a terribly difficult situation for J to manage. He had never been able to stand not being healthy; she was certain he wouldn’t tolerate being truly sick. And esophageal cancer makes one very, very sick. The tumors make swallowing food difficult, if not impossible. As a result, some sufferers lose weight at an uncontrollable clip. They can also experience chest pain and nasty bouts of acid reflux. J knew he was dying—and that he didn’t want to go on living if he could no longer shower or go to the bathroom alone or be reasonably mobile. He broached the topic of medical aid in dying with Susan in February. “Honestly, I had already thought about it,” she says, “so I told him I thought it was a great idea.”

As a Kaiser Permanente Colorado patient, J had access to—and full coverage for—the life-ending drugs. The process, Susan says, was lengthy but seamless. J got a prescription for secobarbital and pre-dose meds; they arrived by courier to their house in April. Having the drugs in hand gave J some peace. He wasn’t quite ready, but he knew he was in control of his own death. He would know it was time when he began to feel like his throat would be too tight to swallow the drugs—or when he became unable to care for himself.

That time came in late June. He was weakening, and he knew it. Having decided on a date, J had one last steak dinner with his family on the night before his death. “He was actually able to get a few bites down,” Susan says. “He was also able to have a nice, not-too-teary goodbye with his stepchildren. It was wonderful.”

Although she was immeasurably sad when she woke the next day, Susan says seeing the relief on J’s face that morning reinforced for her why medical-aid-in-dying laws are so important. She knew it was unequivocally the right decision for him—a solo trip into the unknown, but he was ready for it. At noon on June 25, J sat down on the couch and drank the secobarbital mixed with orange juice. “Then he hugged me,” Susan says, “and he said, ‘It’s working’ and fell asleep one minute later. It was really perfect. He did not suffer. It was all just like he wanted it.”
*Names have been altered to protect the family’s privacy.

Drug Stories

A numerical look at medical-aid-in-dying meds.

$3,000 to $5,000: Cost for a lethal dose of Seconal (secobarbital), one of the drugs doctors can prescribe. The price for the same amount of medication was less than $200 in 2009; the drugmaker has increased the cost dramatically since then. Many insurance companies will not cover the life-ending medication.

4: Drugs that pharmacists compound to make a lower-priced alternative to Seconal. The mixture of diazepam, morphine, digoxin, and propranolol, which is reportedly just as effective as Seconal, costs closer to $500 (pre-dose medications included).

5: Ounces of solution (drugs in powder form that are dissolved in a liquid) a medical-aid-in-dying patient must ingest within about five to 10 minutes.

2: Pre-dose medications—haloperidol to calm nerves and decrease nausea and metoclopramide to act as an anti-vomiting agent—patients usually take about an hour before ingesting the fatal drugs.

10 to 20: Minutes it typically takes after the meds are ingested for a patient to fall asleep; death generally follows within one to three hours.

Uncomfortable Silence

Just because roughly 65 percent of voters approved Colorado’s End-of-Life Options Act in 2016 doesn’t mean Centennial Staters are completely at ease with the idea of the big sleep. Just ask these health care professionals and death-industry veterans.

“In a perfect world, I think one should be with family at the end. There are benefits of sitting with a dying person. Compassion means ‘to suffer with.’ Sometimes that suffering isn’t physical; it’s emotional. A lot of healing can happen at the end.”
—Dr. Michelle Stanford, pediatrician, Centennial

“If people’s existential needs and pain are addressed—things they need to talk to their doctors and family about—natural death can be a beautiful thing. It doesn’t have to be scary. In American society, we don’t talk about death and dying. It’s because we fear it. We are afraid of the anticipated pain, of having to be cared for. In other cultures, there is more family support and there is no thought of being a burden. This is a part of life, part of what should naturally happen.”
—Dr. Thomas Perille, internal medicine, Denver

Doctors don’t die like our patients do. We restrict health care at the end of our lives. My colleagues don’t do the intensive care unit and prolonged death. We, as doctors, are not doing a good job helping patients with this part of their lives. Dying in a hospital is the worst thing ever. There is an amazing difference dying at home around friends and family.”
—Dr. Cory Carroll, family practice physician, Fort Collins

“Most people are unprepared for what needs to happen when a death occurs. Those who choose to lean toward the pain with meaningful ritual or ceremony are the ones I see months later who are moving through this process toward healing. The ones who think that grief is something that occurs between our ears are the ones who struggle the most. Sadly, we live in a society and a culture where grieving and the authentic expression of emotion is sometimes looked down upon.”
—John Horan, president and CEO of Horan & McConaty Funeral Service, Denver

We only die once, so let’s do it right. When death happens, whether it’s our own or a loved one or someone we know, it’s not just their death that we’re acknowledging, but it’s life that we are all acknowledging. I think it’s helpful and healthy to honor death because in doing so, we are helping to celebrate life.”
—Brian Henderson, funeral celebrant, Denver

63 Percentage of Americans, 18 years or older, who die in hospitals and other institutional settings, like long-term care facilities and hospices. In 1949, however, statistics show that only 49.5 percent of deaths occurred in institutions. Because death in the home has become more uncommon, experts say, few Americans have direct experience with the dying process and that separation has, in part, led us to fear, misunderstand, and essentially ignore the end of life as an important stage of life itself.

Sources: Centers for Disease Control and Prevention; American Psychological Association

Another Shoulder To Lean On

Front Range support groups that can make bereavement more bearable. —Will Jarvis

Healthy Self. Healthy Life.

This two-therapist firm offers support sessions specifically for those in their 20s and 30s as well as an anticipatory grief gathering called Facing The Long Road. This latter group—which focuses on helping 19- to 36-year-olds manage the despair and caregiving duties that can come with having a parent with a terminal illness—zeroes in on a demographic whose busy lives often get in the way of their well-being. Cost: $35/session

The Compassionate Friends

The premise behind the Compassionate Friends, a 49-year-old international organization, is that only other bereaved parents can understand the pain of losing a child. Today, the group gathers parents, grandparents, and family members and encourages peer-to-peer healing in monthly sessions. Six Front Range chapters provide safe places for those struggling with loss to share coping mechanisms and ways to find a new normal.
Cost: Free

Judi’s House

Childhood traumas, such as losing a sibling or a close relative, can be especially challenging to overcome. That’s why this nonprofit, housed two blocks from City Park, has trained clinicians on staff to help both children and families dealing with grief. Its 10-week structured programs put kids in groups of five to 10 other children, and the organization provides a free dinner before each weekly meeting—giving anguished families one less thing to worry about.
Cost: Free

What Remains

While there are myriad ways to die, in Colorado there are only a few methods by which your body can (legally) be disposed: entombment, burial, cremation, or removal from the state. We spoke with Centennial State funeral homes and cemeteries to understand the options. Just remember: Colorado law says the written wishes of the deceased must be followed, so discuss what you want with your family ahead of time so they aren’t surprised.

Burial

Typical cost: From about $5,000 for a casket and full funeral service, plus about $5,000 for cemetery fees (plot, headstone, etc.)
What you need to know: In Colorado, a funeral home cannot move forward with a burial (or cremation or transportation across state lines) until a death certificate is on file with the county and state, which normally takes a few days. The funeral home will need information like social security numbers and the deceased’s mother’s maiden name to begin the process. Further, state law requires that if a body is not going to be buried or cremated within 24 hours, it must be either embalmed (using chemicals as a preservative) or refrigerated, so make sure your loved ones know what you prefer. Your family can opt to have your body prepared at a funeral home and then brought home for a viewing or service, though. Finally, federal law mandates that your family be given pricing details about caskets, cemetery fees, and the like before they make a decision, so they are prepared for the costs.

Cremation

Typical cost: From about $600 for transportation, refrigeration, and cremation; additional fees for urns, memorials, and/or funeral services
What you need to know: Choosing cremation does not preclude having a funeral; many people opt to have funeral services and then have the body cremated. (In this case, you’ll still need a casket, but you can rent one instead of purchasing it.) Once you’ve gone the ashes-to-ashes route, you can’t be scattered willy-nilly on federal land, in part because straight cremains are not healthy for plants. For example, your family will need to apply for a free permit—which stipulates how and where ashes can be spread—if you’d like to have your cremains placed inside Rocky Mountain National Park. The most popular national park in Colorado got more than 180 such requests last year.

Green Burial

Typical cost: From about $1,500
What you need to know: Only one Colorado cemetery (Crestone Cemetery) and handful of funeral homes (like Fort Collins’ Goes Funeral Care & Crematory) have applied for and been certified by the Green Burial Council. That doesn’t mean there aren’t various shades of “green” burial available throughout Colorado, though, at places such as Littleton’s Seven Stones Chatfield—Botanical Garden Cemetery and Lafayette’s the Natural Funeral. Among the greener ways to go: avoid embalming (so the harmful chemicals don’t seep into the ground upon decomposition); opt for a simple shroud or biodegradable casket; have your grave be dug by hand, instead of with machinery, which comes with a carbon footprint; or select a cemetery or cremation garden that uses environmentally friendlier plants for landscaping (for example, Seven Stones uses rhizomatous tall fescue for its meadow, which requires less water to maintain).

Complete Article HERE!

Gone but never forgotten:

How to comfort a child whose sibling has died

Children not only lose their sibling, their parents can also disappear into profound grief.

By

In 1971, when I was four years old, my brother died of a congenital heart condition. Writing about this experience has prompted more responses than anything else I’ve ever written or spoken about. Untold and unheard stories appear in comments sections, strangers tell me cross-culturally consistent tales in the soft corners of conference rooms and speak about the siblings they’ve lost and how present the memories of them still are in their minds and hearts.

These stories all have one thing in common: a sense of being forgotten, left out of conversations about the dead, of rituals of mourning, and excluded from the respectful circle that is drawn around the bereaved.

One of the reasons stories of sibling loss spark so much interest is that the research literature in the area is so sparse. We still know so little about what children who’ve lived through this kind of death need as they mourn.

While the quantitative literature has explored the profound negative lifelong physical and psychological health impacts of this kind of bereavement, so many social and familial factors contribute to these impairments that it’s hard to imagine how the figures would look if families and communities were better equipped to respond to grieving children.

Children don’t forget about their lost siblings.

Part of the picture of sibling loss is that it is compounded. Children not only lose their sibling, but also the parents they knew disappear at least for a time into profound grief. This can lead to the loss of the child’s position as they try to cope with the higher expectations on their shoulders.

Adding to this complexity, the small body of qualitative research into children’s experience of losing a sibling highlights a raft of social failures. Silence about the mechanics of death, family isolation and the persistent myth across many cultures that children bounce back from grief more easily than adults are some of the most salient.

In this literature, grieving children tell us about what they wanted and didn’t get, and reading it provides some guidance on how to support bereaved siblings for anyone willing to listen. The following short list of suggestions is drawn directly from this qualitative literature.

Make genuine room for children in discussions

The evidence is very strong that grieving children of all ages need to be involved at every level in discussions about death and in the planning and performing of death rituals.

But, if we’re going to make room for them, we have to get across our own death material and be prepared to answer painful, graphic and profound existential questions about death and dying, such as:

Can you show me what a decomposing body looks like? Why are we going to burn my sister in her coffin? When will you die? And how? When will I die? Why do some people die while others keep on living? Why my brother and not someone else?

To tell the truths about death to children and to really include them in family and community meaning-making is to expose our culture’s myths of death and dying, whatever they are, to profound criticism and scrutiny. That is what we are being asked to do.

Accept that children’s grief is no different to ours

Sibling bereavement researcher Betty Davies’s participants spoke to her again and again about their need for the lifelong persistence of their grief to be understood.

You never stop grieving the loss of a sibling.

They spoke of wanting the adults in their lives to accept that their grief is no different to ours, that they are never too young to feel loss and that just because they are children doesn’t make them any more resilient than grown-ups.

They are asking us to challenge the almost universal myth that children forget, and instead to stand with them in their bereavement rather than setting them apart to take solace in their imagined innocence.

Honour continuing bonds with the dead

Our siblings play a significant role in our development, and this helps to explain some of the reasons why we are so deeply impacted when a sibling dies.

We develop our self in relationship to others, and our siblings are a kind of mirror. When they die, we lose a relationship that provided an essential reflection of who we are and who we might become. Children whose sibling has died need to have a place for their ongoing thoughts, feelings and connection to the dead throughout their lives.

For children who never knew their dead sibling, this affirmation of their connection to the lost one has a different quality but is no less important. While for these children the links are not made up of memories of a relationship, they are important symbolic representations of the self through the lens of the grief that came before.

For both groups of children, those who knew their dead sibling and those who did not, stories about the lost child help to make sense of who they are and of their place in the world.

We can all play a part in making space for children whose sibling has died to bear the unbearable – by offering solace in the form of genuine inclusion and by breaking the silence that can turn pain into suffering.

Complete Article HERE!

Creating Rituals To Honor The Dead At Long-Term Care Facilities

Death and its companion, grief, are often ignored at nursing homes and assisted living centers. Yet ignoring the loss can lead to depression, staff burnout and other problems.

Staff members at Gray Health & Rehabilitation participate in the annual bereavement ceremony.

By Judith Graham

One by one, their names were recited as family members clutched one another’s hands and silently wept.

Seventeen men and women had died within the past year at Gray Health & Rehabilitation, a 58-bed nursing home. Today, their lives were being honored and the losses experienced by those who cared for them recognized.

Death and its companion, grief, have a profound presence in long-term care facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they’d helped for months.

But the tides of emotion that ripple through these institutions are rarely openly acknowledged.

“Long-term care administrators view death as something that might upset residents,” said Dr. Toni Miles, a professor of epidemiology and biostatistics at the University of Georgia. “So, when someone passes away, doors are closed and the body is wheeled discretely out the back on a gurney. It’s like that person never existed.”

At Gray Health’s memorial service on this warm, sunny day, a candle was lit for each person who had died. Their images — young and vibrant, then old and shrunken — flashed by in a video presentation. “Our loved ones continue to live on in the memories in your hearts,” Rev. Steve Johnson, pastor of Bradley Baptist Church, said from a podium.

Dozens of family members gathered outside, each holding a white balloon. At the count of three came the release. Cries of “I love you” echoed as the group turned their faces to the sky.

Sylvia McCoullough wraps her arm around daughter Kim Kohlmayer as they mourn Sylvia’s father, Melvin Henry “Bo” Daniels, at an annual bereavement ceremony at the Gray Health & Rehabilitation in Gray, Ga., on May 14, 2018.

Miles wants to see bereavement openly acknowledged at facilities throughout Georgia to end what she calls “the silence surrounding loss and death in long-term care.” Following in-depth discussions with more than 70 staffers, residents and family members at nine facilities in central Georgia, she has created two handbooks on “best practices in bereavement care” and is gearing up to offer educational seminars and staff training in dozens of nursing homes and assisted living residences across the state.

“Dr. Miles’ work is incredibly important” and has the potential to ease end-of-life suffering, said Amanda Lou Newton, social services team leader at Hospice of Northeast Georgia Medical Center.

Fraught reactions to loss and death are common among nursing assistants and other staff in long-term-care facilities, research shows. When feelings aren’t acknowledged, grief can go underground and lead to a host of physical and psychological symptoms, including depression, distancing and burnout.

Those mourning former nursing home residents pray together near the end of an annual bereavement ceremony at Gray Health & Rehabilitation in Gray, Ga., on May 14, 2018.

Joanne Braswell, director of social services at Gray Health, remembers a resident with intellectual disabilities who would stay in Braswell’s office much of the day, quietly looking at magazines. Over time, the two women became close and Braswell would buy the resident little gifts and snacks.

“One day, I came in to work and they told me she had died. And I wanted to cry, but I couldn’t,” Braswell recalled, reflecting on her shock, made more painful by memories of her daughter’s untimely death several years earlier. “I promised myself never again to [become] attached to anyone like that.” Since then, when residents are actively dying, “I find myself pulling away,” she said.

Sylvia McCoullough, 56, came to Gray Health’s memorial ceremony for her father, Melvin Daniels, who died on April 19 at age 84.

A balloon release concludes the annual bereavement ceremony at Gray Health and Rehabilitation in Gray, Ga.

Two years earlier, not long before her mother passed away, McCoullough had realized that her father had dementia. “He was the strong one in our family. … He always took care of us,” she said, explaining that her father’s confusion and hallucinations shook her to her foundation.

“I cry all the time,” McCoullough continued, looking distressed. “It’s like I’m lost without my mom and dad.” But Gray’s ceremony, she said, brought some comfort.

Edna Williams, 75, was among dozens of residents at the event, sitting quietly in her wheelchair.

“I love to recall all the people that have passed away through the year,” said Williams, who sends sympathy cards to family members every time she learns of a fellow resident’s death. On these occasions, Williams said, she’s deeply affected. “I go to my room” and “shed my own private tears” and feel “sadness for what the family has yet to go through,” she said.

Cathy Bass (left) and granddaughter Heaven Melton attended the bereavement ceremony at Gray Health & Rehabilitation in remembrance of Bass’ brother, Timothy Marion Sanders. “I miss him every day,” she says.

Chap Nelson, Gray Health’s administrator, has instituted several policies that Miles’ bereavement guide recommends as best practices. All staff members are taught what to do when a resident dies. When possible, they’re encouraged to attend the off-site funerals. Every death is acknowledged inside the building, rather than hidden away.

If one of his staff members seems distressed, “I go out and find them and talk to them and ask how I can help them with the feelings they may be having,” Nelson said.

Other best practices include offering support to grieving residents and relatives of the deceased, recognizing residents’ bereavement needs in care plans, and having a protocol to prepare bodies for final viewing.

Some facilities go further and create unique rituals. In one Georgia nursing home, staff members’ hands are rubbed with essential oils after a resident’s death, Miles said. In Ontario, Canada, St. Joseph’s Health Centre Guelph holds a “blessing ritual” in the rooms where people pass away.

Fifteen miles away from Gray, in Macon, Ga., Tom Rockenbach runs Carlyle Place, an upscale facility with four levels of care: independent living, assisted living, memory care and skilled nursing services. Altogether, about 325 seniors live there. Last year, 40 died.

“We don’t talk about it enough when someone passes here; we don’t have a formal way of expressing grief as a community,” Rockenbach said, discussing what he learned after Miles organized listening sessions for staff and residents. “There are things I think we could do better.”

When a death occurs at this continuing care retirement community, an electric candle is lit in the parlor, where people go to pick up their mail. If there’s an obituary, it’s placed in a meditation room, often with a sign-in book in which people can write comments.

Since working with Miles, Rockenbach has a keener appreciation for the impact of death and loss. He’s now considering starting a support group for staff and hosting a death cafe for residents where “people could come and hear what other people have gone through and how they got through it.”

Tom Rockenbach (center) is executive director of the Carlyle Place senior living facility in Macon, Ga. Rockenbach is considering starting a support group for staff and hosting a death cafe for residents where “people could come and hear what other people have gone through and how they got through it.”

Tameka Jackson, a licensed practical nurse who has worked at Carlyle Place for eight years, became distraught after the death of one resident, in his 90s, with whom she had grown close.

“Me and him, we were two peas in a pod,” she said, recalling the man’s warmth and sense of humor.

Over time, the old man confided in the nurse that he was tired of living but holding on because he didn’t want family members to suffer. “He would tell me all kinds of things he didn’t want his family to worry about,” Jackson said. “In a way, I became his friend, his nurse and his confidante, all in one.”

One morning, she found his room was bare: He’d died the night before, but no one had thought to call her. Jackson’s eyes filled with tears as she recalled her hurt. “I’m a praying person, and I had to ask God to see me through it,” she said. “I found comfort in knowing he knew I genuinely loved him.”

Jan Peak, 81, was dealing with grief of a different sort in mid-May: Her husband, David Reed, who had rapidly advancing Parkinson’s disease, had recently moved to Carlyle Place’s assisted living section from their independent-living apartment— signaling the end of their time living together.

Like other people at Carlyle Place, Peak had a lot of adjusting to do when she moved into the facility five years ago after her first husband had died. “Lots of people here have come here from somewhere else and given up their homes, their friends and their communities, often after the death of a spouse,” Peak said. “Once you’re here, loss — either your own or someone else’s — is around you continually.”

She found herself turning to David, whose first wife had died of a brain tumor and whom she describes as a “soft, sweet, wise man.” Before they married, they talked openly about what lay ahead, and Peak promised she would carry on.

“No one can stop the heartache that accompanies loss,” but “my friends and family still need me,” she said.

In late May, David sustained a severe head injury after falling and died. “I miss him greatly as we were very happy together,” Peak wrote in an email. “I am doing as well as I can.”

Complete Article HERE!

Disenfranchised grief

By

Sometimes, we make assumptions about another person’s grief. We may assume, for instance, that when a spouse or partner dies, the person left behind feels a deep sadness and longing. Or we may judge someone for lingering in their grief instead of moving on. Other times, we may not even acknowledge a death, perhaps because it was caused by suicide or a drug overdose. We might also minimize, ignore, or simply not recognize someone’s grief.

These various reactions and assumptions are examples of what Carol Schoneberg refers to as disenfranchised grief. As an end-of-life educator and bereavement services manager at Hospice of Southern Maine, Carol has had more than her fair share of conversations with people about how they are grieving (or not).

“Establishing definitions of proper and improper mourning techniques is a way of excluding certain individuals, thereby disenfranchising them and their grief,” she explained. “Disenfranchised grief presents some complications that are not always present in other grieving processes. When disenfranchised grief is not legitimized by others, the bereaved person may be denied access to rituals, ceremonies, or the right to express their thoughts and emotions.”

An anonymous story

One of Carol’s clients did not feel a deep longing when her husband died a little over a year ago but did experience plenty of other emotions. She agreed to share her story because she hopes it will help other people confront their own feelings. However, she prefers to remain anonymous.

We remained together although as years passed he participated less and we lived parallel lives. I know there are other people who may not have had that same experience, but there are always bits and pieces of living with someone that are not all wonderful. When you’ve been married 50+ years, people tend to believe you are devastated, but there were times when I had wished he’d just go away and there’s shame in that.

Carol has found that most people would be too ashamed to admit such feelings, which is why seeing a bereavement counselor can be so helpful.

Most people are ashamed or embarrassed to say, hey, wait a minute, I don’t want anybody here to think that I’m broken-hearted about what happened. I’m sad, it is definitely causing a difficult experience, but don’t make assumptions about what I’m feeling. Those people may need permission to acknowledge their feelings and this blog post may help to do that. They may see themselves and it might give them the courage to feel what they do and not have shame.

Her client’s husband was in Gosnell (Memorial Hospice House) for three days before he died. Afterward, things were so overwhelming, she almost felt like a non-participant.

During this time I was present but paralyzed and exhausted. It was beyond me. And then slowly, through talking to folks from hospice, I began to see that it was ok and that I could sit and listen and reflect on what I was feeling.

She also took the time to reflect on an incident that occurred when her husband was hospitalized for surgery and made the decision to speak up to hospital officials. After his surgery, he was sent home against her protests that it was too soon and he was much too ill. She was right and soon after, her husband was admitted to Gosnell. The incident bothered her so much that with some help from her primary care doctor, she met with a group of hospital officials.

I couldn’t let it slide, it was so important. Sitting there, I learned that it was circumstances, it wasn’t any one person’s fault and now I understand why it happened.

The fact that she spoke up and followed through helped her client move on, explained Carol.

If you’re left with feelings that something did not happen the way it should have in the care of your person, that can easily become the focus. Often there’s anger and that can become a diversion from letting the grief start to settle or people want to place blame. It’s easier than the grief. Some people never get past that and never go through their grieving process, whatever it is. My client spoke up and she was heard.

Carol’s client took a bold step but she takes exception to the word grief, at least as it pertains to her.

I’m not happy with the word grief because it brings with it an assumption, but I don’t have another one. I think of it as a journey. The biggest thing for me is the change. It’s not always tears, it’s not always unhappiness, it’s a mixed bag. At this time, it’s freedom that I feel and the responsibility that goes with that. What do I do with this freedom, these possibilities, these opportunities? I’m still finding my way.

Different experiences

From Carol’s perspective, everything and anything a person feels after the death of someone who was significant in his or her life is normal.

What I hope that people will come away with after reading this is the realization that there are many kinds of losses and many kinds of grief. Not everybody’s experience is the same, so don’t make assumptions. It’s human to go there, but the minute you start finding yourself making an assumption about someone or judging them, just remind yourself that you don’t know.

Sadness isn’t always about grief

Carol herself has experienced disenfranchised grief related to the death of her father.

I think I saw him four times in my life and when he died, I can’t say I had an ounce of sadness. I felt flat. But the sadness came in when I revisited the sadness I had spent my whole life in front of — the sadness of not having a father. I held the fantasy for 44 years that we would have this deathbed reconciliation and we didn’t.

When there’s a relationship that was either verbally or emotionally abusive or the person was absent in your life, there’s no deep connection, only years of hurt or dissatisfaction, you may grieve what never was. Those things don’t leave, they’re part of who we are. Some people wrestle with anger over it. I don’t, just sadness.

Guilt

Another emotion that some people wrestle with when a loved one dies is guilt. They feel guilty because they didn’t deal with something when the person was still alive or believe that something they did or didn’t do somehow contributed to the person’s death.

“The classic example,” said Carol, “is if my loved one took his or her life and what did I miss? This wouldn’t have happened if I just fill in the blank and that feeling of I am responsible for what happened. They may feel judged, which makes their grief even more complicated. When there is this extra layer, it needs to be worked on before you can move freely to the next phase of the grief journey.”

A death that might go unrecognized

And what about grief that may go unnoticed or downplayed in some way? There are a number of reasons why that might happen — one of them is if you lose a pet. Fortunately, Beth Van Gorden has had the opposite experience. She lost her dog, Bonnie, about a month ago and people have been kind and thoughtful, especially the kids in her neighborhood who told her they were sad to see her without Bonnie.

“I had her for 11 of her 15 years,” Beth told me. “She was with me 24/7 and gave me unconditional love. I live alone so she was my companion and also a vehicle for me to get out of my house four times a day, interacting with my neighbors and keeping abreast of what was going on in my neighborhood.”

The loss of a friend

Beth also knows what it’s like to lose a human friend. Eileen Rubin, who was one of her closest friends, died of cancer in 2015. Beth made regular trips to North Carolina to help Eileen and her family when she was ill and was with her when she died.

“I just knew that she didn’t have much time left,” she said. “It was intuition. I was in Maine and I decided to go down. And she waited. She waited for me. It was an incredible honor to be with her. Her son was holding her and she took her last breath. I think she needed me to be there. I think it was part of our deal in this life that I was going to be there.”

Beth keeps in touch with Eileen’s family and found solace and support in her friends.

“We’ve all gotten to ages where we friends who have died,” she explained. “Some of us have the same friends who have died and so, we get to share that. I felt very fortunate that I had a group of people who could be supportive. I think that’s crucial. I think that for all of us, grief is different and nobody processes it in exactly the same way and it all needs to be respected.”

How to support someone who is grieving

Beth was fortunate to get the support she needed when Eileen died and is getting now with the death of her dog Bonnie. Carol Schoneberg’s client benefitted from what she called the “gift of a support system” that extended beyond family and friends. She highly recommends outside support, such as hospice and some sort of spiritual support — a priest, a rabbi, a minister. Someone who has your perspective and your back.

We don’t always know what to say or how to act when we’re in the presence of someone who is mourning. Sometimes our foot goes right into our mouth and other times our feet take us off in the opposite direction and we don’t say one word at all. Not even “I’m sorry for your loss”.

Everyone I interviewed for this series passed along some advice about things people said or did that helped and things that didn’t. I’ll share their wisdom in the final segment of Living With Grief.

Complete Article HERE!

The Painful But Important Lessons I Learned After My Father’s Suicide

By Christiana Zenner, Ph.D.

Anthony Bourdain; Kate Spade; friends, teenagers, neighbors, veterans; my father. Every suicide is distinct and differently devastating, for those who leave and for those who are left.

Yet there are some commonalities, some moments of recognition both in terms of frequent contributing causes and also in terms of what comes next. Here are the hard and important lessons I’ve learned since my father took his life in 2007—when he was 60, and I was pregnant and in graduate school:

1. Suicide is terrifying.

Suicide is what philosophers and mathematicians refer to as a surd—nonsensical, unexpected, a cavernous impossibility that is nonetheless real.

How often do we presume that other people’s lives are on positive trajectories, if not always totally predictable ones?

Perhaps life looked fine, even good, on the outside (as was the case with Bourdain). Or perhaps friends and family members knew the person was struggling but had sought help, and they seemed to be OK (Spade).

After a suicide, many people will say it “doesn’t make sense.” In many cases, yes, there’s a stunned inability to process that the person is gone. But I think there’s a deeper fear at work here, too: the terror of realizing, “Oh my god, if it could happen to them—could this happen to anyone, even people I love, even me?

It is OK to admit that fear and the cascade of uncertainty it unleashes. Suicide uproots our background assumptions that life makes sense.

2. There are no answers.

There may be generally explicable features in many suicides, but there are no ultimate answers. Hold space for the uncertainty, for the dimensionality of who this person was.

My father was a Navy fighter pilot before he left the military to become a commercial airline pilot. Like many vets, his experiences in Vietnam were traumatizing; he talked about them only rarely, but when he did, the moral and personal agony was palpable. Did he have PTSD? Probably, and society needs to do a better job of destigmatizing veterans and people who have been through trauma. But PTSD isn’t the full story.

The most common response people have when I say that my father killed himself is, “Oh, that’s terrible. Was he depressed?” We don’t know. As a pilot, he resisted seeking psychological diagnoses that would prevent him from flying.

Perhaps he was bipolar, as many family members now think likely. It’s natural to wonder, but we will never know for sure. Posthumous speculation can clarify past patterns. Diagnoses of depression are attractive to people who want explanations. But again: Be careful with the urge to make this “make sense”—because often, that is another way to say, “Oh, this would never happen to me or someone I know.” One of the things that suicide challenges us to do is to recognize that other people’s realities and dimensions far exceed the capacity of our projection.

3. Humility goes a long way.

Check yourself: Avoid explaining what this death means to someone who is grieving a suicide. (This is especially important if you think you have insights or are convinced you are being helpful.) Be present. People in grief need to lean on you, not be lectured by you. And what is true in grief more generally is excruciatingly so when mourning a person who has died by suicide. Frankly, unless we have explicitly said, “What do you think?” it is not at all helpful to hear your speculations or interpretations of what this event means. What we need is the space to grieve and heal in our own complicated realities.

More generally, all of us can work to eliminate unnecessary sayings that are obvious triggers—like “the line at the grocery store was so awful, I just wanted to kill myself!” or making hand gestures that mimic firing a gun into your mouth. It’s been 11 years since my father’s death, and I still cringe at those expressions. Communication evolves with social consciousness, so it’s time to retire those basic expressions.

4. Suicide, I believe, stems from hopelessness—not selfishness.

Some people feel that suicide is a selfish act because it fails to account for the difficulty and devastation wrought on the people who remain. But I agree with the many experts who suggest that suicide is often the result of a total loss of hope and self amid a tsunami of despair.

Suicide may feel selfish to survivors—how could he?—but when someone dies by suicide, they do it not out of selfishness or spite. They do it out of ultimate loneliness and pain so deep that most of us cannot begin to comprehend it because it is on a totally different plane of existence.

5. High-functioning people don’t give many signals. When they do, take those seriously.

My father expressed to a few people that he was thinking of ending his life. Those people, who I know loved him deeply, took him at his word that he would seek help. But I know now that such statements are the high-functioning person’s attempt to seek help—it takes massive effort and will to reach across a divide of loneliness and despair, to entrust someone with such honesty about such heavy burdens. It is another way of saying, “I am alone. I don’t know how to proceed; please help me.”

Take these statements seriously. Accompany the person to get help, right then if possible.

Our society can be very isolating. One antidote that we can give to one another as human beings in moments large and small is in our ability to see one another—to affirm the uniqueness and worth of each individual. We can contribute to bonds and societies that feel secure, safe, trustworthy, and consistent—and perhaps make life a bit less lonely, not just when someone confides in us, but in the caliber and kindness of our everyday interactions.

6. For survivors, some grief is incommunicable.

It is not your job to make your grief legible or to make it conform to other people’s expectations. As a survivor, you will have major triggers that are unrecognizable to most people, and your reactions will vary. I can be totally leveled by the image of my dad’s back in his blue blazer as he strode tiredly away from me at my sister’s graduation, or by how I imagined him leaving the house for the last time, or the first 100-plus times I drove by the fire station outside of which he shot himself. Even the feeling of exhilaration on white water, a delight that he and I shared—these are all particularly potent emotional, geographic, and physical triggers for me, even 11 years later. Most people have no idea.

If you are a survivor, let the emotions surface, and let them pass (not easy: It’s like getting thrashed by a huge wave of rage, sadness, and ugly crying). Let me repeat: You don’t have to hide your emotions, and you don’t have to apologize for them. You don’t even have to explain them. Grief is a shape-shifting, surprising, and (in the case of suicide) often terrifying entity. Lean into people who are trustworthy, nonjudgmental, and who let you be you. And when you meet people who have also experienced the suicide of a loved one or family member, you might find yourself weeping together on top of a mountain during spring ski season (true story). It’s OK.

Presence, care, laughter, and gentleness are salves. I have personally found therapy to be fantastically helpful, and many people benefit from survivor support groups. If you are trying to support someone who is grieving the loss of a friend or family member through suicide, support them with presence and infrastructure. Just hug. Sit. Bring food. Come over to walk the dog together. Call to say you’re thinking of them.

7. Your presence will sometimes make people uncomfortable. Many will react strangely.

People say weird and even hurtful things out of their own profound discomfort after a suicide. Others will disappear entirely from your life. This sucks, but it’s true. Suicide (along with what I call the 3Ds—other forms of sudden death, divorce, and disability) can make people really nervous, and as a result they may react to your presence in all kinds of intense and often unhelpful ways.

One person with whom I was close didn’t call, text, or write me for nearly a year after. Only when I ran into her at a party by chance later did she laugh awkwardly and say, “Yeah, sorry about that. I mean, what could I even have said?” My answer now: “Just call and say you don’t know what to say, and you love me and are thinking of me.”

I have learned that people’s reactions and statements say much more about what they are grappling with than what is true for you. This doesn’t make it easier in the moment, but it does mean you don’t have to take on their stuff. Find your way with the people who let you be you, without foisting their own anxious interpretations onto you.

8. Memorialize in ways that feel right to you.

Just as everyone grieves differently, everyone memorializes differently. In the aftermath of a suicide, ritual and burial are important, though they can take many forms. For some people, traditional religious funeral services may provide important closure. For others, those same services might feel like emotional handcuffs.

As time goes on, trust your creativity and the legacy of the person’s memory. What are the moments that make you think of them with a grin? Consider memorializing a place or an activity that feels like a positive legacy—a meditation bench in a treasured spot or an annual walk with organizations that raise awareness about suicide or mental illness, for example. I have found it meaningful to memorialize my father by consciously giving him a shout out during water sports that we both loved.

Finally: The days around the anniversary of the suicide will be tough. Be gentle with yourself in these times. You also deserve love and kindness.

9. You will change, and your relationships will too.

Suicide is an extreme event that, for survivors, puts much into excruciating texture. For me, my father’s death began a decade-long journey of self-reflection—about myself, my family, my partnership, me as a parent, and society more generally. It has involved devastating anxiety that, with time and therapy and life changes, has given way to profound, gentle, exhilarating clarities. Many relationships, including my marriage, were sundered as a result of this journey.

It has not been easy. Grief doesn’t end, but it does change, and with time it becomes less debilitating, more gently poignant. I wish beyond words that my daughter could have met her grandfather. I also have found ways that my father’s positive legacy lives on in me—and in her.

One aspect of my journey is a radical honesty, forged in agonies that none of us wished on ourselves. I am the person that I am because of many factors. One of them is my father’s suicide.

10. You can be OK.

There are no neat closures to the surd of suicide. But healing can be real. Small or large changes in your life may emerge over time. Sometimes they will surprise you. But I’m here to tell you: There is healing, and believe me—you are not alone. With the life you have, you can narrate the story that you are always unfurling.

If you’re feeling suicidal or know anyone who is, the National Suicide Prevention Lifeline in the U.S. is at 1-800-273-8255.

Complete Article HERE!

A dying mother wrote her children letters, leaving a gift of love for years

Before dying of brain cancer at age 56, Jacqueline Zinn wrote letters to each of her children, including daughter Mary Kathryn.

By Steven Petrow

My friend Jacqueline Zinn was diagnosed with glioblastoma, a brain cancer, in 2013; she died 18 months later, at age 56, leaving behind a husband and four kids. Jacquie was a triathlete who knew a thing or two about endurance, and she managed her treatment — surgery, radiation and chemotherapy — with the same skill and organization she had brought to her work as a project manager for a drug company. Once she realized that she had only weeks to live, Jacquie began planning for the next chapter: her death and its aftermath.

And so “every night for weeks she wrote letters to our children,” her husband Doug recalled. Jacquie wrote multiple letters to each child, to be opened at different life milestones. Jacquie wanted to be “present with her kids,” he said, at each of those important moments

for what I jokingly call “The End” is not for faint hearts. War hero John McCain is said to have been disciplined and firm as he planned his funeral over the past year, including the singing of the Irish ballad “Danny Boy.” But few of us have that strength. Recently divorced, I needed to rewrite my will and my medical power of attorney as well as a host of other financial and medical documents. At almost every turn, I found myself crashing head-on into the wall of denial. Just last week, my attorney begged me to acknowledge that I was at least receiving her emails, even if I couldn’t respond to them. “Yes,” I replied, tersely. All this resistance, and I’m not suffering from any terminal condition.

That’s why Jacquie Zinn’s letters to her children seem heroic to me. After all, she did have a terminal diagnosis when she sat down to write what ended up being more than a dozen letters to her children, ranging in age from 11 to 21, and she knew her time was short. I first heard about the letters at her memorial service in 2013. This past spring, working on a book about death and dying, I reached out to her second-born son, Jerry, who was writing about the loss of his mother, to ask if he’d be willing to share his letters from her. He’d already gotten two — one soon after her death and one when he graduated from college — and after some hesitation, he said okay. Now 24, Jerry will get the final letter when he marries.

“The letters my mother left me are among the most precious gifts I possess,” he told me. “She diligently took the time, the very limited time, as her life was coming to an end to sit down and think about her children’s futures.”

So one day, in perfect cursive penmanship and blue ink after her oncologist told her she had only weeks left, Jacquie wrote her first letter to Jerry, then age 19, to be opened after she died. Here is a portion of it:

“Dear Jerry, my budding film-maker,

“I know you have a lot of emotions running through you, as I did when my father died, but I was much older than you at the time, so I really can’t begin to truly comprehend what you are feeling. I am so incredibly sorry that I had to die while you are so young and I assume it sucks for you. Perhaps you can use some of these emotions and feelings in your upcoming work(s), assuming you continue to pursue film.

“Let me assure you that I did absolutely everything I could to stay alive for as long as possible. I know you realize that having been with me at many of my treatments or tests. Plus the acupuncture, tons of praying I also did. But for some reason I just didn’t make it as one of the chosen ones to be cured. But because of what I did I’m sure I lived much longer than if I hadn’t been in good shape to begin with.

“I am incredibly proud of you for everything you have done in your relatively short life. I will be watching over you every day to see what new and exciting things you will accomplish — regardless of what occupations(s) you pursue over your lifetime.

“Do your best to support Dad and your siblings, especially during this first year as it will be the hardest for everyone. I remember that from when my father died. Time will certainly help, but it takes a long time to focus on the happy memories while the sad thoughts are more immediate and closer at hand.

“I had many fantastic years on earth, more than a lot of people, hence, I have no complaints. I survived a melanoma, car accident in the mountains of West Virginia with Uncle Jerry, car accident in Durham. So I have already lived many lives and I was extremely grateful for each and every moment. Try and live your life that way and you will be a happy and fulfilled human being.

“I love more than you will ever know, my dearest Jerry.

“Love, Mom.”

On the day Jerry graduated from the University of North Carolina at Chapel Hill in 2016, Doug handed over letter No. 2, written with the same pen, on the same type of note paper.

“My sweet dear Jerry,

“Well — this is it — a big milestone in your life — college graduation! Congratulations. I am so incredibly proud of you no matter what your major or minors. I know you made it worthwhile and got just exactly what you wanted to out of the experience. I know you learned an incredible amount about subjects and probably an even greater amount about people.”

Jerry said that at various times during college he had considered dropping out, but “knowing that I would never receive that letter if I did not graduate was a very strong influence in keeping me in school. The letter was a motivation for which I will be forever grateful.” Knowing Jacquie as I did, I’m certain that was part of her master plan.

In the second letter, Jacquie signs off with these words: “I am watching over you all the time, or at least I hope I can do that! Congratulations, again. Enjoy this fabulous day and all the celebrations around. Big Hugs and Kisses! Much Love, Mom.”

What a gift, an eternal gift, I thought as I read and reread the two letters. More than anything, I silently bowed in amazement, understanding how Jacquie had faced her own version of “The End.” Doug reminded me that she’d written her letters while in a wheelchair, paralyzed on one side.

With Jacquie’s example in mind, I finally sat down and read the pile of documents my lawyer had sent to me, realizing that my denial served no purpose. To my surprise, I found comfort in taking care of that necessary business — once done. I’d like to think that was something Jacquie felt, too, as she sent her missives into the future.

Complete Article HERE!

The Death of the ‘Standard Funeral’

Funeral customs are changing dramatically, leaving families with more decisions to make at just the moment they may be least prepared to make them. Making decisions ahead of time honors “ancient wisdom.”

A funeral procession from the early 1900s.

By Steve Willis

Yogi Berra once quipped, “The future ain’t what it used to be.” If there is a time that I see church parishioners facing Yogi’s confused logic, it is when dealing with decision making for a funeral and burial of a loved one. American culture is going through a tumultuous season of cultural change. The last time that people want to deal with more change is during the loss and grief of a loved one’s death. But the reality is that the American funeral experience has changed and is continuing to change dramatically.

When I performed my first funeral in 1993, there was a certain set of expectations for what would happen when someone died. It almost always went like this. Three days after the person died there would be a funeral, or rarer then, a memorial service (a worship service without the body of the deceased). The evening before the funeral there would be a visitation at the funeral home to view the body and share condolences with the family. Usually at 11 a.m. or at 2 p.m. the funeral would take place at the church. Then the family, followed by friends, would drive in procession with headlights on to the cemetery for a brief committal service. After the committal the family returned to the church for a meal and time to visit. On occasion I have been invited to drop by the family home afterwards when all had been finished and there was nothing left to do but sip bourbon and visit.

Yes, this is a very Presbyterian, and a very Southern Presbyterian funeral experience. We value brevity when it comes to funeral worship services, and we value lingering when it comes to visiting afterwards. Of course, there are many variations on a theme played out in different religious traditions, and all of them have their strengths and weaknesses. I admire the African-American Baptist tradition, which has been able to resist many of the negative consumeristic trends involved with funerals, but I do not possess the proclamatory wind to preside for several hours over a funeral service.

Things have certainly changed from when a traditional schedule was the expected norm. There are many reasons for the changes that now often require families to design their own funeral rituals. One of the most significant is that in 1970 only 5% of the American population was cremated after death. Last year 55% chose cremation. The cost of burial with embalming of the body, metal casket and metal vault can run about $11,000, and of course this has been a motivating factor for choosing cremation.

Not too long ago I performed a funeral for the beloved family doctor of his remote rural village. He had made all the arrangements well in advance of his death. Ben was buried in a simple pine box that he had made himself and was interred on a hill at the back of his farm. He had a friend who had prepared his body after death and kept the body refrigerated until his family could see it. The doctor was a keen environmental steward of his farm as well as his community, and he did not wish to add the mixture of formaldehyde, methanol and humectants to the soil of his farm. This makes me wonder what really is traditional after all, because the doctor’s method would have been common place before industrialization and the Civil War. (Check out this website for different state requirements for a funeral at home.)

Ben was on to something. Think about what you would like your funeral to be. Talk to others about it. Don’t get scared off by our American cultural reluctance to have a conversation about death. Do you want to be cremated or embalmed? There are other options now to cremation than burning the body; it can also be done with water. Do you want a religious service to mark the occasion? What will be most helpful for your surviving family? I think that religious services can be deeply moving and genuinely helpful for people. But I should think that. I am a pastor. I know that this is not true for everyone. The point is to think about this beforehand and share with your family what is important to you and make plans for it.

Let me put in a word for funeral home directors. It has been my good fortune to be friends with a couple of them and a golf partner with one of them. I have often heard terribly negative caricatures of funeral home directors, most of the time from people whose only experience has been attending a few funerals. My experience has shown them to be people who pursue their work as a calling. I have watched them at times provide funeral services for poor families with disregard to the business end of their work. If you are interested in learning what a funeral director’s life is like, then read Thomas Lynch’s The Undertaking: Life Studies from the Dismal TradeHe is an American Book Award winner writer and a funeral home director in his small town of Milford, Michigan.

Lynch gives us, who live in what is often a death-denying culture, this sober reminder.

This is the central fact of my business – that there is nothing, once you are dead, that can be done to you or for you or with you or about you that will do you any good or any harm; that any damage or decency we do accrues to the living, to whom your death happens, if it really happens to anyone. The living have to live with it. You don’t. Theirs is the grief or gladness your death brings. Theirs is the loss or gain of it. Theirs is the pain and pleasure of memory.

The practical wisdom of these words reminds us that when the time finally comes for you or for me as it will for us all, water cremation, fire cremation, embalming, metal vaults, pine boxes, columnbariums, floral wreaths, funeral homilies, favorite hymns, presented flags and headstones will not matter to us. But some of these things will matter and give meaning to those who survive us.

I realize I’m not making any of this process easier. That’s my point. It’s not easy. And the ever-growing options only make for more complicated decisions. But reflecting upon death and dying and thinking about what our end will be like for others make us better human beings. And that is nothing new at all. That is ancient wisdom. 

Complete Article HERE!