At his memorial service, friends state that the thing they will remember most about Paul is his mischievous attitude toward most things. He was always looking for a way to get into trouble and usually found it. He was also a kind soul who loved to help those in need. It was written into Paul Newman’s will that $26 million dollars go to the Painted Turtle, a camp for seriously ill children. The Painted Turtle was Paul’s favorite charity and often donated money and his time to improve it.

A separate memorial will be held for Paul where close friends, Julia Roberts, Jack Nicholson, Sean Penn, Tom hanks, and Bruce Willis will read excerpts from “The World of Nick Adams,” an adaptation of several of earnest Hemmingway’s plays, Paul’s favorite author. The proceeds from the reading being held at the San Francisco Davies Symphony Hall will also be going to The Painted Turtle camp.

The cremation urn that was chosen for Paul is made of deep blue crystal. It is said that blue was a favorite color of his and it was the best way that anyone could think of to give back to him even a fraction of something that he gave to others. The cremation urn will be buried next to his parents in the family plot in his hometown.

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.

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.

In Izzy and Lenore, Katz tells the story of his simple life on Bedlam Farm in upstate New York. The story revolves around Katz’s love for his growing menagerie of farm animals – particularly his dogs, whose distinct and colorful personalities come alive in Katz’s writing – and the love they returned to him. And yes, it’s a story about loss and grief; but most of all, Izzy and Lenore is a story of the amazing power of animals to comfort and heal.

Being a hospice volunteer is a noble calling, but it’s not for everyone. Many people shy away from even considering taking on such a mission, convinced that frequent contact with illness, death, and grief would be too depressing to bear. That’s what Katz’s friends and family told him when he announced his plan to join the local hospice team and provide comfort and support to terminally ill patients and their families during the final stage of life.

Finding redemption in helping others
What his family didn’t realize was that Katz – a prolific writer who has penned a book a year since 1990 while serving as a regular contributor to publications like Slashdot, Wired and Rolling Stone – was already sinking into a crippling depression. In fact, one of the reasons Katz wanted to volunteer with hospice was his hope that reaching out to help others would help to lift him from sadness and self-absorption.

The depression settled in after Katz was diagnosed with diabetes, during a particularly long and harsh winter on the farm. A social worker Katz met at one of his book readings had talked to him about the need for hospice volunteers and suggested that it might be possible to bring his dogs into service as well. “I was drawn to hospice work because I wanted to do something with my dogs that was more meaningful than some of the traditional dog-human activities, like sheepherding or even conventional therapy work,” Katz says.

When Katz expressed his desire to have his border collie, Izzy, join him in service as a hospice volunteer, hospice officials met his request with enthusiasm tempered by a dash of caution. Both Katz and Izzy took part in rigorous training exercises to make sure they had the temperament to succeed as hospice volunteers.

Unconditional love and devotion
One of the most moving themes in Izzy and Lenore is Izzy’s remarkable ability to sense a patient’s mood and needs and respond accordingly. When a patient died, for example, Izzy instinctively transferred her attention from the deceased to the grieving family. In time, Katz’s affectionate Labrador, Lenore, also joined the hospice volunteer team, and the two dogs brought love and comfort to every hospice patient and family they visited.

Whether Katz recovered from his depression because of his hospice work or because of the unconditional love he received from his animals, one thing is clear throughout the story: everyone loves Izzy and Lenore.

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.

Nancy Sherman, Director of Bereavement Services for the Center for Grief & Healing with Hospice of the North Shore, says support groups provide an answer for many people. According to Sherman, support groups “offer a safe place where people who are hurting come together to work through their grief.” Supportive family members, friends and therapists have their place in grief recovery, but drawing support from and giving support to others who are going through the same thing provides a kind of help one can’t find elsewhere. According to one support group member cited by Sherman, “Hearing how others feel makes you feel you’re not alone.”

Still, people are often wary of participating in groups, according to Sherman. Many are simply uncomfortable with the notion of talking about their feelings in front of others, while others hold misconceptions about support groups that prevent them from opening themselves to the relief and healing a group can offer. Following are five popular myths about grief support groups, countered by reality.

Myth: Everyone in the group has to talk.
Reality: Although the group is formed on the premise that talking through your grief is helpful, no one is forced to talk. Grief groups are non-threatening gatherings, and many people are helped simply by listening.

Myth: My grief isn’t as severe (or important, or serious) as others.
Reality: Although grief is a universal experience, everyone’s grief is different. Bereaved individuals are encouraged not to compare themselves to anyone else. The common bond is the need for help in coping with grief.

Myth: A grief support group will be depressing.
Reality: In fact, many find the opposite to be true. Group participants feeling relieved and uplifted when they realize they are not alone in their emotions. Groups provide a supportive environment where people can feel release their emotions to make room for healing.

Myth: My loss happened a long time ago; I’ll feel silly to bring it up now.
Reality: Grief follows no timetable. Many milestone events – weddings, anniversaries or birthdays, for example – can trigger memories that make the loss feel painfully new. A support group can help people cope with a loss, no matter when that loss occurred.

Myth: Grief support groups are only for the families of people who received foster care.
Reality: Although grief support groups are often (but not always) sponsored by hospice organizations, services are usually open to anyone who has experienced a loss, often at no charge or for a small fee. The generous donations of grateful participants help support these programs.

In truth, then, support groups offer hope for the future to anyone who’s grieving. To find a support group near you, contact your local hospice organization.