Tragic story inspired Engage With Grace
Like all movements, Engage With Grace started with a story – in this case, a very tragic story. In 2004, at age 32, Rosario Vandenberg fell ill and was subsequently diagnosed with a malignant brain tumor. Following the diagnosis, Vandenberg, a career pharmacist and the mother of a two-year-old daughter, lived only seven short months. Her family watched helplessly as the cancer took its toll, and after two months in the hospital, doctors said that Za, as Rosario’s family knew her, didn’t have long to live.

Vandenberg’s sister-in-law, Alexandra Drane, recalls: “When the end was near, the doctors pulled us aside and advised us of the options available. They strongly suggested we keep her in the hospital to make sure she would be well cared for – worrying that her case was so complex, there was no way we could care for her at home,” said Drane. The family, however, did not agree.

Antonio Drane, Alexandra’s husband and Za’s brother, told the doctors in no uncertain terms that the family would take their beloved Za home to die in their midst. Although the family had never discussed with Za what they should do in this situation, Antonio believed she would have wanted to be at home.

The night the family brought Za home, in what seemed like an affirmation of their decision, Alessia, Za’s daughter, snuggled next to her mother in bed. In the unfamiliar and foreboding hospital environment, Alessia had been afraid to lie on the bed or even touch her mother. Now, not only was the child happy to be close to her mother, but even more astonishing, Za – who’d been in a coma for a week – opened her eyes and looked lovingly at the child next to her.

The very next night, Za died peacefully.

Turning sorrow into action
As a result of that experience and a series of synchronistic events that followed, Alexandra Drane, president of health-care communications company Eliza Corp., teamed with medical blogger Matthew Holt to form the nonprofit organization Engage With Grace.

Drane and Holt launched a website, called “Engage with Grace: The One-Slide Project,” aimed at making one of life’s most difficult discussions easier by boiling it down to five talking points on a single, easily e-mailed and linked slide that can be shared in all kinds of circumstances, including family dinners. That was in the summer of 2008. Last fall, Engage With Grace launched a coordinated “blog rally” aimed at getting families to talk about death during the Thanksgiving holiday.

Although some families or individual family members may be reluctant to venture into such an emotional discussion at a holiday gathering, Thanksgiving is rooted in strong family traditions, and it may be one of the rare times during the year when families actually sit down for a meal together. Ronald Kessler, a sociologist at Harvard Medical School, puts it this way: “Although it can be uncomfortable to discuss this topic over the dinner table when posed as a hypothetical, this discomfort pales in comparison to the anguish families go through when they have to grapple with the realities of end-of-life decision-making. As a result, the discomfort is likely to be a price well paid.”

End-of-life wishes don’t match reality
The signature offering of the Engage With Grace is the downloadable One-Slide Presentation. On the slide are five questions designed to start the conversation and clarify the wishes of family members regarding their own end-of-life care. Engage With Grace also offers many other resources, including several statistics that help to explain why end-of-life care should not be left to chance, such as:

73% of Americans would prefer to die at home, but anywhere between 20-50% of Americans die in hospital settings.

While more than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, only 50% say they’ve actually talked to their families about their preferences.

80% say it is “very” or “somewhat” important to write down end-of-life wishes, but only 36% have actually written out their instructions.

As more families have “the conversation” and more people make their wishes known, the discrepancies in these statistics will narrow. And Engage With Grace will fulfill its purpose: for everyone, as far as possible, to be able to meet death on his or her own terms.

Thousands of horrified family members converged upon the cemetery, looking for answers. To some, the disruption of a loved one’s remains ripped open the wounds of grief, and survivors felt as if they were experiencing the death and loss for the first time. More than 200 families planned to file a class-action lawsuit against the cemetery’s owners. According to lead attorney Paul Shuldiner, “There’s a lot of grief, bewilderment and anger” among the families. Understandably so.

What happened at Burr Oak Cemetery?
Burr Oak is ­– or was – the final resting place of approximately 100,000 people. It is a historic cemetery, where many prominent African Americans are buried, including Emmett Till, the 14-year-old whose lynching and torture in 1955 in Mississippi helped ignite the civil rights movement, as well as blues singers Dinah Washington and Willie Dixon, boxer Ezzard Charles, and several Negro League baseball players.

Four current and former cemetery employees, including the manager, have been charged with dismemberment of human bodies, a felony that carries a sentence of 6 to 30 years in prison upon conviction. At a news conference, Dart said he suspected that “irregularities” had occurred at the cemetery for at least four years and possibly much longer. He also warned that the desecration could involve many more bodies than the original estimate of 300.

Why did they do it? Greed, according to officials, who say the accused employees resold burial plots and split the money they made, approximately $300,000. To make room for the new burials, the cemetery workers allegedly excavated some caskets and dumped human remains and headstones in an unused part of the cemetery. In other cases the workers crushed caskets into the ground and buried new ones on top of them.

Families who want to know what happened to their loved one’s remains may be in for a long and frustrating wait. Members of FBI evidence-recovery teams, some of whom worked on the 1995 Oklahoma City federal building bombing and the 9/11 crash of United Flight 93 in Pennsylvania, are sifting through evidence. According to FBI spokesman Ross Rice, it’s impossible to estimate how long the probe will take.

If there’s a hero in this story, it’s the cemetery worker, referred to as “Employee A” in court documents, who accidentally came upon evidence of the disturbed graves. Ignoring warnings from the exposed workers to keep his discovery to himself or risk losing his job, he told another coworker about what he’d seen, and that coworker reported the crime to the cemetery’s owners.

End-of-life discussions benefit patients and caregivers
A study of 332 terminally ill cancer patients at the Dana-Farber Cancer Institute revealed that patients who said they did not discuss end-of-life issues received more aggressive medical care in their final week of life.

Such aggressive treatment was linked to lower quality of life for the patients and their caregivers, who also experienced feelings of regret and an increased risk of depression. Those who reported engaging in end-of-life discussions, on the other hand, were more likely to receive hospice services, and their loved ones reported a better quality of life during bereavement.

Doctor-patient discussions result in less aggressive treatment, lower costs
Meanwhile, the March 9 issue of the Archives of Internal Medicine included a report on a study of 603 terminally ill cancer patients, which was funded by the National Institute of Mental Health and the National Cancer Institute as part of the ongoing Coping With Cancer study.

According to the report, when doctors and patients talked about whether treatment should focus on prolonging life or controlling symptoms, patients were more likely to die at home and spend less time pursuing aggressive treatments. Researchers say these patients had a better quality of life and survived as long as those who did not discuss end-of-life options with their physicians.

The benefits of open communication between doctors and their dying patients include not only physical and emotional comfort, but also cost savings. The cost of providing health care in the last week of life was 36 percent lower for patients who reported having end-of-life discussions with their doctors, and researchers estimate that more than $76 million could be saved annually if just half of the people who die from cancer each year had those discussions with their physicians.

How a child views the death of a parent
When a parent dies, a child’s sense of security and survival is threatened. The child is suddenly forced to deal with issues of illness, mortality and life after death – issues even adults find hard to face – long before they’ve had a chance to acquire the coping methods they’ll learn throughout life. As adults, we want to support and nurture the grieving child, but where do we begin?

A child’s grief is different
Dr. Cynthia L. Long (formerly Cynthia Long Lasher) – a Lutheran minister and grief specialist – reminds us that children grieve differently than adults. “Children grieve in spurts,” observes Dr. Long. “It’s a blessing, because to endure a terrible loss with no relief would just be too much for a child.” For instance, she’s found that playing helps children deal with their pain in a way that’s familiar to them, “sort of rationing out their pain by focusing on something else for a while.”

In her book, Death is No Stranger: Helping Children Grieve, Dr. Long offers practical strategies for guiding children through their grief. Among them:

• Avoid euphemisms. Talk to the child gently, in clear, direct language.
• Avoid use of the word “should.” Don’t say, “You should be happy,” or “You shouldn’t cry.” Such admonitions aren’t helpful for grieving children or adults.
• Allow children to be sad. “They desperately need someone to talk to about what they’re feeling, rather than making them feel they’re ‘wrong’ somehow,” says Dr. Long.

Resources to help children cope with grief
For more resources to help children cope with grief, contact your local hospice or pediatrician’s office, and visit the Cincinnati Children’s Hospital Medical Center website, where you’ll find a recommended reading list of children’s books about grief.

Source: NewsVirginian.com

The timeless (but seemingly opposing) observations of both men continue to ring true in 21st century culture. Music arouses passion and awakens long-forgotten memories; leads soldiers into battle and celebrates their victories; whispers children to sleep at night and enlivens their play during the day. Nothing can rival music in its ability to capture the joys of new love – or the anguish of love lost.

Music and Grief
Music’s power to convey the full spectrum of emotions is a comfort to many people coping with bereavement following the death of a loved one. Perhaps a song will call to mind the person who died, or perhaps it will help the bereaved to express painful feelings when words simply fail. Some people may use music for meditation or relaxation as they try to cope with or take a break from the intense emotions of grief.

Joy Berger is a music therapist and the director of education and volunteers for Hosparus Inc., the community hospice of Louisville, Kentucky, southern Indiana and central Kentucky. In a recent lecture on Death, Dying and Bereavement, Berger spoke about the importance of music in bereavement.

In her address, Berger told her audience that music’s role in bereavement comes from the fact that music is “a universal language,” and that the music we listen to is “always autobiographical.” The unique memories evoked by certain songs help transform the “past into the present,” according Berger.

Quoted in Scientific American, renowned neurologist Oliver Sacks of Columbia University puts it another way: “(Music) really seems to be as important a part of human life and communication as language and gesture. . . It is a way of connecting one consciousness to another.”

And that communication and connectedness are the things that sustain bereaved listeners as they navigate through their grief.

With such a wide spectrum of “normal” in the grieving process, how can we know when grief is spinning out of control? Bereavement counselors and therapists who differentiate normal grief from “complicated grief” are leading a movement to establish “Prolonged Grief Disorder” as a new mental-health diagnosis for clients who, six months after the loss of a loved one, are showing no signs of being able to recover or move on with their lives.

Normal response or mental disorder?
Holly Prigerson, who studies bereavement at Dana Farber Cancer Institute, says the key symptom that makes Prolonged Grief Disorder different from depression or anxiety is an intense yearning. Prigerson says that normal grief is “wanting what you can’t have. That hankering and yearning and pining and craving for something that you think is essential to your sense of happiness and well-being.”

In complicated grief, the intense yearning, preoccupation with the deceased, and feelings of emptiness do not lessen with time. In other words, complicated grief is the inability to recover after the death of a loved one. Prigerson’s research suggests that 10 to 20 percent of Americans who suffer a loss experience prolonged grief.

The current Diagnostic and Statistical Manual of Mental Disorders (DSM) defines grief as the normal response to loss rather than a medical diagnosis, and doctors are not paid to treat it. If complicated grief is approved as a new disorder, symptoms and treatment protocols would be established, and doctors could be reimbursed for treating patients with the disorder.

How to recognize complicated grief
According to the National Institutes for Mental Health (NIMH), the following symptoms may indicate complicated grief when they persist, with no sign of abating, for more than six months following the death of a loved one:
•    Strong yearning for the person who died
•    Waves of intense sadness and longing
•    Feeling of disbelief or difficulty accepting the death
•    Avoiding people, places or things that call to mind the loss
•    Pervasive bitterness or anger
•    Feeling intensely alone or lonely
•    Inability to control thoughts, memories, or images of the person who died
•    Seeing life as empty or meaningless without the lost loved one
•    Belief that grieving less would be a betrayal of the deceased

Study to explore complicated grief in older adults
In April, NIMH began recruiting 200 older adults who suffer from unrelenting symptoms of complicated grief to participate in a four-month, non-drug clinical trial. Dr. M. Katherine Shear of Columbia University is the psychiatrist conducting the study. “The death of a loved one can take an especially devastating toll on an older adult,” says Shear. “Older people may experience a cascade of losses as their social circles become smaller. The death of a spouse, adult child, friend, parent, or sibling — along with the social, financial and medical issues that accompany it — can throw an individual into a discouraging downward spiral. People who continue to struggle with bereavement after more than six months may be experiencing complicated grief. We believe we can help.”

Source: Reuters, WBUR.org

Throughout her illness, Katie had remained upbeat, documenting her experience through blog posts and photos, although the pain was sometimes excruciating. Karen Reider, Katie’s partner of 10 years, stood faithfully by and encouraged Katie to fight. Although doctors warned there would be no cure for Katie, Karen told her – and believed – that the cancer was something they just had to get through, that they would, indeed, get through it together, and that the best of life was yet to come.

When Karen received a phone call in late June telling her that Katie’s tumor was “97% gone,” she was ecstatic but not surprised. This was the result she had been waiting for. Tragically, however, the cancer claimed Katie’s life a mere 16 days later, and when death struck, Karen’s world came crashing down.

Picking up the pieces
Compounding the tragedy of Katie’s death were the two young sons she left behind. As a now-single parent, Karen faced the unimaginable responsibility of caring for her sons while trying to find her own path through grief. Three months after Katie’s death, Karen started to blog. She described the early months of her bereavement in vignettes all too familiar to those who have been there: losing her keys, her wallet, her memory; once-close friends who never call, and more casual friends whose unwavering support she came to rely on.

Grief is a complex emotional response to loss, and each person’s experience of grief is unique. By the end of October, Karen concluded that admonitions to avoid major decisions for a year and other grief-by-number tips were “a bunch of bunk.” She wrote in her blog:

…never in my life have I found myself more open or with these thoughts, feelings, inspirations..and so I say WHY NOT?  Why surpress these fresh ideas when I’m MOST willing to act on them, to live in ways I’ve never imagined, always dreamed…maybe I’m far off..and I welcome your thoughts but I tell you again MEDIOCRITY is NOT FOR ME..I will not settle.

People to see, lessons to learn
How, then, would Karen and her sons navigate through their grief? By hitting the road. Five months after Katie’s death, Karen quit her job as a pricing analyst at BMW, gave away or sold many of her possessions, and left the New Jersey apartment she and Katie called home. She bought a blue 2006 Honda Odyssey, packed up 4-year-old Aiden and 2-year-old Koen, three suitcases, bins of toys and books, and a small high-definition video camera.

This was something Karen and Katie had always wanted to do together; Karen put a black-and-white photo of Katie in one of the van’s visors and clipped Katie’s glasses to the other, and she and her sons set off to travel the country, visiting friends and family and seeing the sights along the way. Recently Karen told an interviewer that, although she will never understand why Karen was taken so young and so tragically, “What I know is that it happened for a reason, and that I have to live in a spectacular way in honor of her suffering so greatly. I can’t just shrivel up and die. I have to do something great.”

As the first anniversary of Katie’s death approaches, Karen and her sons have traveled to Florida, Louisiana, New Mexico, Texas, Arizona, California, and Ohio. She has shot hours of video (http://www.youtube.com/noretakes), which she uploads for Cincinnati filmmaker Robert Parish, producer of the documentary show “In the Tank,” to edit and post on YouTube. Through her blog, she’s been a source of inspiration and strength to countless readers. And on her journey, Karen has rediscovered the things that are most important to her: “What I’m going to take with me at the end is my memories and my experiences, not my things,” she says.

Jeremy Toeman is out to change all that. Toeman is the founder of Legacy Locker, an online service that promises to protect your online assets and identity until it’s time to pass them on to a beneficiary of your choosing.

Toeman came up with the idea for Legacy Locker when the birth of his son and the death of his grandmother occurred within the same year, causing Toeman to focus intently on his own mortality and how his loved ones would attend to business matters when he died, given the digital lifestyle he leads. His grandmother, at the age of 94, was an avid computer user who emailed, played games online and used Google to search for information. When she passed, Toeman and his family were unable to access her email or let her online friends know she was gone. When Toeman considered the value of his own digital assets, he knew he needed a solution, and he saw an opportunity to fill a growing need.

Virtual Safe Deposit Box
With Legacy Locker, users pay a fee to store their account numbers, passwords, user names, etc. online. For every item stored, the user can designate a beneficiary to receive that information following the user’s demise. The user then names a trusted verifier who will contact the website when the user dies, and Legacy Locker will release the user’s information to the appropriate beneficiaries.

And Legacy Locker is just one company of several companies that promise to facilitate the storage, security and passing on of one’s online information. Similar to Legacy Locker, AssetLock (formerly YouDeparted.com) calls itself a “secure safe deposit box” for documents and information, while Deathswitch labels its services as “information insurance.” Slightly Morbid is a notification service that lets your online friends know when you’ve died so they won’t be left worrying and wondering why you suddenly disappeared.

Securing your digital information is as important as securing any other personal information – like wills, bank accounts, and property deeds, for example – so be sure to investigate a company or individual before you hand over your information to them. Make sure the company is trustworthy and that adequate security is in place.

The latter was the case for Kristy Davis and her dad. When Kristy’s terminally ill mother was discharged from the hospital and admitted to home hospice care, Kristy and her dad responded to the emotionally charged situation by staying busy. When the going got tough, they went shopping.

Shopping for an answer
Kristy’s dad purchased and upgraded gadgets and systems around the house to provide comfort and make life easier for his wife and her caregivers. When Kristy was besieged by feelings of sadness and helplessness over her mother’s suffering, she set up a laptop at her mom’s beside, “just in case she wanted to do any typing.”

In the days following her mother’s death, Kristy and her dad jumped into action planning the funeral. They purchased and configured components for their computer and sound systems, as well as an LCD projector to show the PowerPoint presentation created by Kristy’s sister for the funeral.

Even after the funeral, the shopping spree continued. Eventually Kristy realized that the buying and busy-ness were merely ways to avoid confronting the tremendous loss she and her father shared. When the money for electronic toys ran out, Kristy and her dad were forced to find another way to bond.

What now?
Their conversations were awkward, but they spent time together on long drives and over meals. Eventually they began to communicate via email, and they talked about the sorrow and loss they shared. Kristy’s dad, a retired Air Force colonel, was even able to tell his daughter of his enduring and unconditional love for her for the very first time.

The experience of Kristy and her dad isn’t unique – grief is hard work, and humans often rely on one or more defense mechanisms to help them get through. But in the end, as Kristy and her dad discovered, the only way out of grief is to go through it, and sharing helps to light the way.

Like trimming the grocery budget or turning off extra lights in the house, consumers may look for ways to lower funeral costs, but the fact is, we all die eventually, and someone has to deal with the remains. Some funeral industry professionals are responding to the economic downturn by offering a wider range of goods and services to help people arrange their final exit in the style of their choosing.

One Funeral Director’s Response
Peter Moloney, whose family owns six funeral homes on Long Island, has made it his mission to help customers arrange unique funerals on behalf of themselves or their loved ones. From a hearse towed by a Harley-Davidson motorcycle to an ice-cream vendor in a Good Humor truck greeting mourners after a funeral, Moloney’s specialized services allow people to be remembered in ways as unique as they are. According to Moloney, 44, a fourth-generation funeral director: “You have to give people something special. If you’re not, someone else will be. That means adjusting to what people want today.”

Even in Recession, Many Opt to Go in Style
As funerals trend more toward cremation and home funerals and away from elaborate caskets with all the trimmings, consumers are driving the recession home to the funeral industry. One of the ways innovative funeral directors like Moloney are responding is by catering to individual wants and needs. For example, services for environmentally and cost-conscious families may include renting coffins and minimizing the use of chemicals, while custom amenities such as 14-karat gold mementos and personalized coffins and cremation urns appeal to people who prefer to go in style.

Growing Market
One thing funeral directors and others in the funeral industry can count on, even in economic hard times, is an endless stream of clients. And while consumer funeral spending may be on the decline, the rising number of deaths each year ensures a certain level of growth in funeral goods and services. (The annual death rate will continue to grow at about 1 percent per year through the early 2020s, corresponding to the aging of the baby boomers.)

In other words, while the recession is forcing funeral industry professionals to reconsider the goods and services they will offer and how they will deliver them, those who are prepared to adapt and evolve will continue to prosper.