Gorilla Mother, Human Grief

Elizabeth Uppman

In a German zoo, a gorilla named Gana is having trouble letting go.

Gana’s baby, Claudio, died some weeks ago, presumably of a heart defect. I say “presumably” because nobody knows for sure what he died of—Gana won’t relinquish his body to the zookeepers. She carries it around with her, strokes his hair, shakes him slightly as if to wake him.

Gana made the news because she appears to be grieving, and because grieving is supposed to be a human activity. Zoo visitors watch her and weep.

Perhaps they see in her an echo of their own losses, of times when they, too, have delayed their understanding of certain brutal facts.

For weeks after my 3-year-old son died, I woke up frantic every the morning because I didn’t know who was taking care of him. I knew Gabriel was gone; I knew I wouldn’t find him in his bed by the window. But I couldn’t fix in my mind the understanding of what gone meant. The thought that he had disappeared—vanished—evaporated, like a splash of water on a hot sidewalk—was too big for me.

So I unconsciously defined “gone” as “somewhere else.” But where? And with whom? Were they nice? Did they have all his medicines? Did they rub his head when they gave him his bath? It always took me a few groggy minutes to remember that gone meant dead, and that dead meant Gabriel no longer needed anybody to take care of him.

Over time, researchers say, gorilla mothers like Gana become less and less attached to the bodies of their babies, until finally they abandon them. We can only guess what’s going on in their heads, but it looks like a slow realization: the baby is never going to wake up again. Something like that happened for me, too, over a period of months and years. The true meaning of gone sunk in deeper and deeper, until one day I woke up, not frantic, but knowing.

It’s a good thing, of course, to rejoin the world where people think and act clearly and deliberately. Still, once in awhile I miss those days, when in the confused moments between sleep and waking I could still believe that Gabriel was alive.

Elizabeth Uppman

Round-Up: Preventing Falls, Expressing Condolences, Respite Care, and More to Come

I’m still catching from a lovely August vacation, but wanting to share some articles that appeared in The New York Times while I was gone. Here Ohn Mar talks about a study examining ways to reduce falls among the elderly.

Falls among the elderly, a common source of injuries, have largely been considered inevitable. But a recent large-scale study shows that a combination of adjusting treatment, assessing risk and educating patients can substantially reduce serious falls.

The study, by Dr. Mary E. Tinetti and her colleagues at the Yale School of Medicine, compared two similar regions of Connecticut. For four years in the experimental region, the researchers asked clinicians to assess their patients’ risk of falls and to consider medication reduction and other prevention measures like strength training, vision adjustment and blood pressure treatment. The rate of serious falls by the elderly in that region was 11 percent less than that in the region that followed normal care.

That lower rate of falls translated to 1,800 fewer emergency visits by the elderly, the researchers said, saving more than $21 million in health care costs. The study was published July 17 in The New England Journal of Medicine.

In this essay, the vice chairman of medicine at Memorial Sloan-Kettering Cancer Center, Kent Sepkowitz, M.D., writes about doctors not expressing condolences.

Not long ago, soon after we put our pet dog to sleep, I received a handwritten note from our veterinarian expressing her condolences. The letter was not brief — she described my children’s fondness for little Rudy and how caring they were as his condition worsened. It was thoughtful and personalized, not something she had simply dashed off.

In contrast, during my 25 years of caring for humans I have written only a handful of similar notes to families after a loved one’s death.

Here, John Leland writes about respite care and the reluctance of caregivers to use the service for their ailing relatives.

In an aging population, nine million people take care of someone with Alzheimer’s or another form of dementia, and for many it is a responsibility without a break.

But as health professionals and the federal government have recognized the strain on these family members — including higher rates of depression, hypertension, diabetes, sleep disorder, heart disease and death — a growing number of facilities now offer short-term respite stays. In its simplest form, respite might be a home aide a few hours a week or use of an adult day care service. To caregivers at the end of their rope, real respite means a short time away — what for anyone else would be called a vacation.

Most caregivers do not take respite vacations because they see them as an admission of failure, or they worry that something will happen while they are away. A paradox of caring for an elderly relative is that the burden is so big, many feel they cannot share it.

Paula Spencer, a senior editor Caring.com, wrote about NYT’s respite care piece on their Caring Currents blog.

Every caregiver should know the key points:

1. Respite can save your health and your marriage.
2. Overnight options include in-home care and short-stay arrangements in nursing homes, assisted-living facilities, and "camps," such as one run by the Family Caregiver Alliance.
3. Using vacation respite isn't bad for the loved one with dementia.
4. Taking a vacation isn't a sign that you're a lousy caregiver.

That last point probably belongs first, and in all caps. There's such a pervasive misconception, deep in the psyche, that it isn't "right" to leave a loved one who needs care while you go off on holiday. "Most caregivers do not take respite vacations because they see them as an admission of failure or they worry something will happen while they are away," says the Times piece.

Online Discussion on Complicated Grief

Earlier we posted about an article that will appear in the October/November issue of Scientific American Mind about new research into the underpinnings of complicated grief, which is described as when the painful emotions associated with grief are so severe and prolonged they interfere with a person's ability to accept the death and resume their own life. This may occur in 10 to 20 percent of the bereaved.

This past Monday, Washington Post staff writer Rob Stein and UCLA researcher Mary-Frances O'Connor were online to discuss the study.

Munich, Germany: How do you diagnose and discriminate between complicated grief and depression? Also, if a person suffers from complicated grief, is he or she more likely to suffer from depression?

Mary-Frances O'Connor: There are several questions that people have about the difference (and similarity) between complicated grief and depression. They are different, with different symptoms. However, about 1/3 of people with complicated grief also have depression (just like you can have depression and anxiety). In the study that I did, I specifically interviewed the participants to determine if they had depression, and I excluded anyone who did. So the brain activation that I report on is just from complicated grief.

So, what is the difference? Scientific research has shown that in depression there is a sad mood about everything (and it is often felt to be all one's fault), but with complicated grief, the sadness centers just on the deceased (and so does any guilt). In depression, there is also often a loss of interest or pleasure in things, where as with complicated grief, there is still pleasure from thinking about the person who has died. Complicated grief also has intrusive images and thoughts about the deceased that come unexpectedly, which is not the case with depression.

Mourning Randy Pausch on the Internet

Wired.com published an article about how people mourn in the Internet age, specifically in the recent death of Randy Pausch, whose "Last Lecture" video has been viewed by millions. Alexis Madrigal refers to the outpouring of blog posts and comments posted to online obituaries as a new form of grieving, a distributed funeral.

It dawned on me that I was witnessing a new form of grieving: the distributed funeral.

Why watch the service on TV when you can comment on the obituaries themselves? As my friend and Dwell magazine editor Aaron Britt put it Saturday, "the internet is an open letter to everyone," and people began using any form text box on any webpage, related or not to the Pausch family itself, to make known their sadness.

At some level, these comments are a bit crazy. It wouldn't make sense in any other context to write or say what people are writing in the comments sections of blogs across the country. You can't imagine telling someone about Randy Pausch's death and them saying to you, "I am real sorry for your loss Jai," because you are not, in fact, Jai.

But given the searchability of the internet, this behavior isn't that nuts. It doesn't actually matter what URL you put your condolences on, it's all part of Googleverse, so Jai could find it if she wanted to find it.

He also compares this phenomenon to other displays of public grieving that have had for celebrities and public figures.

The mourning also mimics the way that people experience Pausch's powerful oration. You interacted with Randy through a little box embedded in a webpage. Your headphones piped his voice clear and strong into the center of your brain, almost as if some deep part of your own mind was delivering his nuggets of wisdom. He was talking to you alone, not the hundreds packed into a theater or your family gathered around the television. In response, then, it made sense to get personal and say, directly, "Thanks, Randy. We'll miss you."

This mourning splits the difference between the small and generally private funerals of our friends and family and the public spectacles that marked the passings of Stalin, or Elvis, or Princess Di. Millions of people grieved alone in the asynchronous communities of the internet.

Still, at whatever scale and medium chosen, all these death rituals retain their universal purpose. They all provide convincing evidence that though the star may die, the universe continues. Though the Marine is gone, the corps lives on.

The news of Pausch's death brought me a moment of pause. My thoughts have been with his wife, Jai, and their three children. In May I had a brief encounter with Jai at a park near their home. My family was taking a long drive from Pennsylvania to the Outer Banks when we stopped to let the kids stretch their legs. I thought she looked familiar as our children played near one another, but my suspicions were confirmed when I heard her telling her son that 'Grandma Pausch' was on a bench nearby. We exchanged a few words about the challenges of keeping track of all your children when one needs to use the restroom. I quietly told her she was an inspiration when I thought her kids would not hear the conversation. It was nothing really, a simple moment. I do not know the Pausch family, but I guess this is my moment of public mourning. My deepest sympathy to the Pausch family. I am sorry for your loss. I am inspired by your courage.

Research Shows Neurobiological Underpinnings of Complicated Grief

The October/November issue of Scientific American Mind will contain an article about new research into the underpinnings of complicated grief, which is described as when the painful emotions associated with grief are so severe and prolonged they interfere with a person's ability to accept the death and resume their own life. This may occur in 10 to 20 percent of the bereaved.

. . .researchers have come a step closer to elucidating the neurobiological underpinnings of this condition called complicated grief (CG). A new functional magnetic resonance imaging (fMRI) study, published online in May in the journal NeuroImage, shows that in CG patients reminders of the deceased activate a brain area associated with reward processing, pleasure and addiction.

A team led by Mary-Frances O’Connor of the University of California, Los Angeles, studied 23 women—11 of whom suffered from CG—who had lost a mother or sister to breast cancer in the past five years. While in the scanner, the women saw pictures and words that reminded them of their loved one. Brain networks associated with social pain became activated in all women, but in the CG patients reminders of the deceased also excited the nucleus accumbens, a forebrain area most commonly associated with reward.

O’Connor believes this continued neural reward activity probably interferes with adaptation to the new situation. “When we see a loved one or reminders of a loved one, we are cued to enjoy that experience,” she says. “But when a loved one dies, our brains have to adapt to the idea that these cues no longer predict this rewarding experience.” Scientists do not yet know why some people adapt better than others do.

O’Connor hopes the findings will lead to new treatment strategies that will “help the brains and minds of CG patients understand that the person is gone.”

HFA discussed the implications of classifying complicated grief as a mental disorder in the DSM-V in its 2007 book, Living With Grief: Before and After the Death.

Study Examines Emotional Toll of Stillbirths and Infant Deaths on Obstetricians

The July issue of Obstetrics & Gynecology included a University of Michigan Health System survey on the emotional toll of stillbirths and infant deaths. Of the 804 obstetricians who responded, three-quarters said the deaths took a large emotional toll on them personally, and nearly one in 10 considered giving up their practice.

"Our survey reveals that perinatal death has a profound effect on obstetricians, and 8 percent had considered giving up obstetrics because of the emotional difficulty of caring for patients with perinatal death," says lead author Katherine Gold, M.D., MSW, of U-M's Department of Family Medicine and Department of Obstetrics and Gynecology.

"We know that stillbirth and infant death are traumatic events for families; this study suggests that they are also traumatic for the physician."

. . .

Two-thirds of physicians supported training by formal presentations or seminars, and nearly half recommended informal gatherings for physicians to discuss difficult experiences. Many respondents suggested that a meeting with bereaved parents could serve as a useful training strategy as well as a way of helping physicians cope with their own feelings about the loss.

Anticipatory Grief for Dementia and Alzheimer's Patients Not Unusual

The Eagle-Tribune (MA) dealt with a question about anticipatory grief among family members of Alzheimer's and dementia patients. The executive director of Elder Services of the Merrimack Valley, Rosanne DiStefano, answers a question from a member of a caregiver support group about mourning the loss of a family member before they die.

Families caring for someone with dementia often start the grieving process long before their loved one passes away. Many times the caregiver is not even consciously aware they are plodding through the stages of grief; they may be somewhat aware of bouts of sadness, depression, frustration and even anger or resentment, but they might not be able to put a label on the experience nor completely understand why they are experiencing these clashes of emotions.

Round-Up: Awards, New Caregiving Advice Column, MedPAC report and more

This week's collection of articles, posts, and items of interest from around the web:

• The Jefferson Awards, honoring contributions through public and community service , announced its 2008 winners, including the founder of a hospice in rural Mississippi.


• The Rosalynn Carter Institute for Caregiving is now taking nominations until August 15 for its 2008 Leadership in Caregiving Award.


• Judy Bachrach, journalist and contributing editor at Vanity Fair, had launched a new website on online advice column on dying well


• The Medicare Payment Advisory Commission (MedPAC), an independent Congressional agency, has released its June 2008 Report to Congress. There is a lot of information about the Medicare hospice benefit in the report. HFA will share highlights in a future post.

Round-Up: Risk-of-Death Charts, Violent Death Rates, Obit Magazine and More

A collection of articles, posts, and websites from around the web this week.

• The Journal of the National Cancer Institute, published risk-of-death charts, offering the public way a simpler was to view health threats. The charts stress the three factors that most influence mortality, the person's age, gender, and smoking status. Read the news coverage from WebMD and the Associated Press.


• The New York Times reports on the high rate of suicides among violent death statistics. Over half of all violent deaths are the result of suicide, from 2005 data.


• An op-ed appearing in The Wall Street Journal by the Abigail Alliance for Better Access to Developmental Drugs, urges the Senate to pass a bill that would allow terminally ill patients access to experimental drug treatments.


• An article from The New York Times discusses the role of geriatric care managers.


• And last, Obit Magazine, which describes itself as a magazine that explores death as an integral part of life.

More on Hospitals Handling of Early Infant Death

Last month we posted an article about how two hospitals handle early infant death in Berks County, Pennsylvania. Earlier this week, Tampa Bay Online published two articles about a bereavement program, Cherished Moments, at Brandon Regional Hospital in Florida. One article discusses the program, which includes photographing the baby, and creating a box for mementos. The other article profiles the nurse, Laurie Van Damme, who began the program.

The Role of Grief Counseling - Revisited

In an August 2007 article from the journal Professional Psychology, Dale Larson and William Hoyt seek to set the record straight on the benefits of bereavement counseling. A summary of the argument posted recently on the British Psychological Society's Research Digest blog, describes how the reputation of the field was damaged after an unpublished student dissertation, claiming 38% of bereaved clients would have fared better with no treatment, was cited one time by pyschologist Robert Neimeyer in 2000. "Since then, over 14 studies have reported the 38 per cent figure, but each time they have cited Neimeyer's published paper (a summary of past research), not Fortner, thus giving the misleading impression that the result came from a piece of quality, peer-reviewed empirical research."

Larson and Hoyt made the same argument in HFA's 2007 book, Living With Grief: Before and After the Death, in a chapter entitled, "The Bright Side of Grief Counseling: Deconstructing the New Pessimism." In this chapter, Larson and Hoyt address the challenges faced by bereavement professionals to combat this images. An excerpt:

A major implication of the new perspective is that bereavement professionals can enjoy a more realistic and positive view of their helping efforts. For the past 6 years, the possibility of harming clients has troubled counselors who accepted the TIDE [treatment-induced deterioration effects] findings. If 38% of grief-counseling clients and nearly 50% of normally bereaved clients are worse off at the end of treatment than they would have been without treatment, grief counseling is ethically problematic. The perspective offered here should provide relief for these counselors.

Hospice administrators and other nonclinicians who assist the bereaved can also approach their work with greater confidence. Many of these professionals were strongly influenced by the new pessimism. Patti Homan, the Bereavement Professional Section leader for the National Council of Hospice and Palliative Professionals of the National Hospice and Palliative Care Organization, received inquiries from hospice bereavement coordinators in different parts of the country who were concerned because their administrators, as a result of the publicity that attended the CFAH report, were questioning the value of their bereavement programs (personal communication, March 1, 2006).

Correcting these negative views of grief counseling and bereavement services will be difficult; replacing them with the cautious optimism that seems warranted in light of research findings to date will require systematic efforts.

The whole chapter is available for purchase here, as is the complete book.

How Hospitals Handle Early Infant Death

A recent article from my local newspaper, the Reading Eagle (PA), discusses how two area hospitals help families whose babies die at birth. One hospital hangs a yellow rose on the mother's door, so all hospital staff know the family has lost a baby. They allow parents to spend as much time as they want with their child.

Berks County’s two hospitals — Reading Hospital and St. Joseph Medical Center — have support systems in place that help families cope with infant death.

As part of that effort, hospital staff puts together memorial boxes for families. Those boxes include photographs, locks of hair, knitted clothing and small shells used to baptize the babies.

"We want to create as many memories as we can," said Lori Meredith, a nurse in the neonatal intensive care unit at Reading Hospital. "It is a lot of memories to create in a short amount of time."

Role of Caregivers, Medical Homes, Dear Abby, and the Compassionate Friends

Here's another round-up of a few interesting items:

• From the caregiverunderground blog, a post about how family members often don't label themselves caregivers when providing support for a dying relative.

  To those of us helping our loved one through difficult times, a caregiver is someone you hire to help if don’t have the time or skills to care for your loved one. I remember early on my aunt said, “have you seen or read the caregiver book I got during Bill’s illness?” Why would I need to read such a book, I was her niece helping her because I had the time and I loved her. I was not her caregiver. It really did not hit me until about 6 months in that I realized, but never verbalized, that I was her primary caregiver.



• Friday's Dear Abby column included a letter offering advice to those visiting a terminally ill patient, that offers some good suggestions.


• This Boston Globe article discusses the evolving role of a medical home, and discusses pilot projects being tried.

  When the medical home was first conceived by pediatricians about four decades ago, doctors thought it would most help patients with complex or chronic problems. Tests in several practices nationwide found that these patients treated in medical homes more often got needed care promptly, hospitalization rates dropped and patient satisfaction rose.
  
  Still, the concept didn't gain much traction until the last four years, when organizations representing 333,000 doctors, including many of the nation's primary care physicians, endorsed the medical home for all patients.



• The Compassionate Friends, a national support group which assist families following the death of a child at any age, has an upcoming conference in Nashville on July 18-20.

Follow-Up Questions from HFA's Living With Grief: Children and Adolescents Teleconference

HFA’s teleconference features some of the best-known experts in the field of grief and loss. While the goal of the program is to share new insights and tangible ideas that can be put to use to help grieving children and adolescents, HFA strives to hear from professionals who are working with children every day. Prior to the 2008 broadcast, HFA solicited questions from Site Coordinators. Many of these questions were worked into the program, but as a follow-up we have included two more here, with answers from Dr. Kenneth J. Doka.

Question: What is the best way to tell a child that a loved one has died when it happens suddenly, or if there has been no discussion about death before the death occurred?

Dr. Doka: Simply, honestly without euphemisms. I would want to find a quiet area and make sure the child had a lot of support around. One book that can be useful in explaining death is What Does that Mean? A Dictionary of Death, Dying and Grief Terms for Grieving Children and Those Who Love Them by Smith and Johnson. This book identifies more than 70 important words, explains how to pronounce them and what they mean, and offers guidance about how to use these words and discuss these subjects with children.

Question: Do you have suggestions for other books that can be used to help children deal with grief?

Dr. Doka: Books can be very effective resources in helping children and adolescents learn more about grief. Bibliotherapy can be very useful but I always treat it as a prescriptive. Books have to be “prescribed” for a particular concern -- if not they can sometimes do as much harm as good. Also remember that the books used should be developmentally appropriate for the particular child. I think it is also important that the books are used in conjunction with counseling or other support.

Listed below are a few suggestions for books divided by reader level. These books are part of a more comprehensive list found in “Bibliographical Resources—Children, Adolescents, and Grief” by Charles Corr, in Living With Grief: Children and Adolescents, Kenneth J. Doka and Amy S. Tucci, Eds., published by Hospice Foundation of America, 2008.

Picture and Activity Books for Preschoolers and Beginning Readers

Carney, K. L. (1997-2001). Barklay and Eve Activity and Coloring Book Series. Dragonfly Publishing Company, Wethersfield, CT. This series currently has eight titles. Each book tells a story and offers drawings to color or blank spaces to draw pictures about a loss-related topic that adults may find difficult to discuss with children. In each book, two curious Portuguese water dogs learn lessons like: loss and sadness do happen; those events are not their fault; it is OK to have strong feelings as long as they are expressed in constructive ways; and “we can get through anything with the love and support of family and friends” (Book 1, p. 5).

De Paola, T. (1973; 1998). Nana Upstairs and Nana Downstairs. New York: Putnam. Tommy likes visiting “Nana Upstairs” (his great-grandmother). When told that she has died, he does not believe it until he sees her empty bed. A few nights later when Tommy sees a falling star, his mother suggests that perhaps it represents a kiss from Nana who is now “upstairs” in a new way. Later, an older Tommy repeats the experience and interpretation after the death of “Nana Downstairs” (his grandmother).

Storybooks and Other Texts for Primary School Readers

Alexander, A. K. (2002). A Mural for Mamita/Un Mural Para Mamita. Omaha, NE: Centering Corporation. A young girl, her family, and the whole neighborhood plan a fiesta to celebrate the life of her grandmother who has recently died after a long illness. Mamita was well known and greatly loved in the neighborhood as the proprietor of the local bodega or store. The girl’s special contribution to the celebration is a brilliant mural painted on the side of Mamita’s store. The text of this book appears in both English and Spanish.

Bunting, E. (1999). Rudi’s Pond. New York: Clarion. While Rudi is sick, his classmates send cards and make a big “GET WELL RUDI” banner for his hospital room. After Rudi dies, the children write poems and make a memorial pond in the schoolyard that attracts a beautiful hummingbird.

Literature for Adolescent Readers

Gignoux, J. H. (1998). Some Folk Say: Stories of Life, Death, and Beyond. New York: FoulkeTale Publishing. Here are 38 legends, retold in prose and poetry, that different cultures have used to come to terms with the reality of death and hopes for life beyond the grave. Brief comments from the author introduce each section and follow each story. The book is also enlivened by 8 dramatic illustrations. A treasury of global culture to stimulate the imagination and to use in working with children.

O’Toole, D. (1995). Facing Change: Falling Apart and Coming Together Again in the Teen Years. Burnsville, NC: Compassion Books. This little book is intended to help adolescents understand loss, grief, and change, and to think about how they might respond to those experiences.

Traisman, E. S. (1992). Fire in My Heart, Ice in My Veins: A Journal for Teenagers Experiencing a Loss. Omaha, NE: Centering Corporation. This book offers a journal framework for teenagers who have had a loss. A line or two of text on each page and many small drawings offer age-appropriate prompts for this purpose.

A Gentle Death: Five Months with Hospice

Following the death of her husband, John H. Ross, in December 2002, Barbara O’Neil Ross began writing about their experience. John spent over five months in the care of Hospice of Cambridge in MA. Both John and Barbara were strong believers in the benefits of hospice care, becoming familiar with hospice through reading and the work and efforts of good friends.

After the death of Barbara’s mother in 1983, which Barbara felt was prolonged unnecessarily causing her mother additional suffering, her support for hospice intensified. She and her husband both knew that they wanted to give John “a gentle death.” Barbara’s nine-part series, A Gentle Death: Five Months with Hospice, captures the essence of hospice care and the various roles the hospice team can play in the lives of the dying and their loved ones.

“You know, this is the beginning of the end,” John’s lung specialist tells me over the phone when I ask if he will authorize hospice care. He agrees to sign the required papers predicting a life expectancy of less than six months – but seems reluctant. Awake most of the night, I agonize over the decision. Next morning I phone the primary care physician, an old friend of my husband. His response to hospice: “I’m so relieved to hear this. I was afraid you didn’t realize how serious his condition is.”

A few days later a starchy Scottish woman arrives with a mountain of forms. She pulls her chair up to John’s bed, her kind eyes looking directly into his, and says, “You know, love, your lung disease isn’t going to improve.” Her warmth and honesty put us at ease. Read the complete series here.

No More Stages of Grief

This Psychology Today blog from J. Worth Kilcrease, LPC, FT, discussed the failings of models of mourning that are based of stages of grief. He describes several reasons why these models are not helpful to understanding how people mourn. Even worse, these types of models can create expectations of the ‘right’ way to mourn. HFA has many articles about the grief process, including debunking myths about grief.

Those Killed at VA Tech Remembered, One Year Later

It has been one year since 33 people, including the gunman responsible for the shootings, were killed at Virginia Tech. The families and friends of the deceased are coping with their grief and developing memorials of their loved ones in myriad ways. Here is a selection of the media coverage of the anniversary of a public tragedy this week.

The New York Times' Ian Urbina writes about one family who lost their daughter, Austin Cloyd, in the shooting. Last year, they had asked that donations in her honor be sent to a program she had volunteered for in the past, rebuilding homes in Appalachia. Over time, Cloyd's father, who is also a professor at Virginia Tech, began bringing students along, and eventually urged the university to engage students in public service. Now, a new program called V.T. Engage asks students,faculty and staff to perform 10 hours of service, for a total of 300,000 hours, in honor of the victims. They have put in more than 200,000 hours so far this year.

USA Today features the father of a German instructor who died. The father, who is a writer-in-residence at LaGrange College in Georgia, has taken his son's collection of digital collages and developed them in to an exhibit on display at his school. The AP reported friends and family of Daniel O'Neil, an engineering graduate student, are releasing a CD of his original music.

The Washington Post hosted an online discussion with Jay Poole, director of Virginia Tech's Office of Recovery and Support, on how Virginia Tech students are handling the anniversary. The Post's Style section also featured a story of how a survivor, Derek O'Dell, is coping. They also reported on Virginia Gov. Timothy M. Kaine calling for a day of remembrance Wednesday. The AFP reports on how the university as a whole, is dealing with the tragedy and is moving forward.

UPDATED 4/16/08 11:00am
Two new stories appearing this morning, from the Washington Post a story about the anniversary including video and photos. USA Today also updated its coverage with more photos and video from memorial services.

Remember Me - Photographs of a New Hampshire Family's Journey through Illness and Death

The Concord Monitor and their former photographer Preston Gannaway, earned the Pulitzer Prize in journalism for her photo series which chronicled the death of Carolynne St. Pierre. The moving photographs, original articles, and multimedia presentation are online at the newspaper's website. The photographer and a reporter spent two years with St. Pierre and her family as they prepared for her death and grieved afterward.

The Commonwealth of Virginia Declares April the Month of the Grieving Child

Read the proclamation on The Grieving Child website and view events being planned by the Central Virginia Bereavement Coalition, including HFA's national teleconference next week which focuses on children's grief. Find out where you can view the teleconference in your neighborhood.

HFA Profiles: Pamela Gabbay, Program Director of the Mourning Star Center

Today we introduce you to Pamela Gabbay, Program Director of the Mourning Star Center for grieving children, a community service program of the Visiting Nurse Association of the Inland Counties. Like many of you who support those who grieve, Ms. Gabbay feels a true calling and connection to this important work. You can learn more about Ms. Gabbay and others like her by attending HFA's national teleconference broadcast next week. Find a site in your area to view the teleconference.
Lisa McGahey Veglahn

---

Pamela Gabbay

When Pamela Gabbay, Program Director of the Mourning Star Center for grieving children, a community service program of the Visiting Nurse Association of the Inland Counties – Hospice, describes her path to helping children cope with loss, she says she has “one of those stories.” Gabbay’s parents died a few years apart, when she was in her 20s and just starting a family of her own. Through it all, she simply tried to cope, not really knowing anything about the process of grief and loss. “Six weeks after my mom died,” Gabbay remembers, “I was in a deep spiritual place of sadness and despair, but needing hope and guidance. I told myself, ‘If I ever get out of this pain, I will dedicate my life to helping other people through their own pain’.” And from that moment forward, that is exactly what she has done. She went back to school and began to learn as much as she could about counseling those who are grieving. And then came what she calls the “struck-by-lightning moment.”

Through a contact at school, she heard about a children’s grief center, the Mourning Star Center, that was opening in her community. Not only was she struck by the proximity of the center to her home, but even the name held meaning for her. “My mother had always talked fondly about a boat she had worked on—the Morning Star!” Gabbay said. “I signed on as the first volunteer at the center, and on that first day I knew I was home.”

One of the most wonderful and surprising elements of Gabbay’s work is witnessing the level of compassion and support that the children and teenagers offer to each other. She remembers the conversation between two boys, both of whom had 14-year-old brothers who had died, sharing what their families had each done with their brothers’ belongings. “Watching how the teens make new friends, how they lean on each other and show true compassion for one another, is a true gift,” and is an ongoing reminder of the importance of peer support, Gabbay said.

Of course, supporting grieving children takes much more than peer support. Gabbay and the others on staff at Mourning Star provide a wide range of activities and programming, much of it focusing on how to deal with “special days,” like holidays or birthdays. And as kids grow and change, their needs change as well. As Gabbay points out, the transition is “huge for that 8th-grader who is becoming a high-school freshman without Mom around,” and that same student may need renewed support when facing graduation four years later.

The Mourning Star Center runs concurrent parent groups and Gabbay strongly encourages parents to learn as much about what kids may be facing in grief and loss. Parents of grieving children and teens, of course, often worry that their grieving child may not be doing well in school. Gabbay often uses the analogy of an Etch-a-Sketch, the children’s toy that one draws on and then shakes up to erase the picture. “A kid may be drawing a picture, having fun,” she says, and then when a parent dies, it’s as if “someone comes along and shakes it all up, and all of the pictures and information is gone.” These stories, she says, can often be a way to help adults find a better understanding of what kids may be going through.

These examples can also be very useful when educating teachers and school administrators about grief and loss, Gabbay has found. Just as grief may affect adults cognitively, the same can be true for young people. So a grieving teenager may not be grasping algebra concepts cognitively, and at the same time may be asking the question, “Why does algebra matter right now, anyway?” Gabbay is enthusiastic about the “fabulous, caring individuals” in her local school system and has found the schools to be open about setting up grief groups and accessing the resources that her grief center provides. And she has found that the importance of this not only helps children cope, but that young people will remember those teachers who reacted to their loss in a supportive and helpful way.

When Gabbay speaks to teachers or other adults who want to help children and adolescents cope with loss, one point she always makes is that young people experiencing loss often feel “invisible;” that they feel they are not seen or heard in the same way. Yet she also finds that, while younger children need to be “seen and heard,” teens may prefer that others do not directly address their loss. Gabbay’s advice is to always ask the young person what he or she feels would be most helpful.

One experience that Gabbay has found particularly “amazing—one of the best weekends of my life,” was when she directed Camp Erin, an overnight grief camp funded by the Moyer Foundation. Forty-six kids attended the two –day camp in the mountains, as well as 50 volunteers—“all of whom expressed enthusiasm and interest in attending next year’s summer session the day we ended!” Gabbay recounts. Gabbay describes the arc that she witnessed in the kids who attended. “When they arrived on Friday, they were somewhat trepidatious—they were getting to know each other, asking questions. By mid-day Saturday you could already see a change—they weren’t just bonding with each other, but were actively working on processing their individual grief experiences. You could see a real awareness of the concept that they weren’t ‘alone’—the realization that others understood. For many, it literally added a spring in their step!” By Saturday night’s ceremony, in which each child lit a luminary for the person who had died and placed it in a boat which was then set afloat on the lake, Gabbay said that the adults could see that, “it was as though a burden had been lifted, if even just for that one night.” Many parents made similar observations when reunited with their children on Sunday. Gabbay already has plans to expand participation in this summer’s camp, and the kids at Mourning Star are still talking about it as well.

While Gabbay clearly has found her calling in her work of helping young people cope with loss, she is quick to acknowledge that the work can be difficult. She feels fortunate to work with a strong team at the Mourning Star Center, a team that can “lean on each other in a meaningful way.” She emphasizes how important it is that they can stop for a hug or to talk, recognizing that “it’s okay to be honest and real about how hard it can be to hear these stories every day.” Gabbay also began an ADEC (Association for Death Education and Counseling) chapter in her area. She did this partly out of the need to have a forum for local professionals to network and share ideas, she says, but also because of the need to be with others who, even with “just a look,” can offer understanding and support.

Gabbay recognizes the importance of self-care. A self-professed “huge music fan,” she is sure to attend at least ten concerts every year, and even books passage on a rock-and-roll cruise. One of her favorite activities each week is to “turn up the music, hop into the pool” with her two teenagers, and just “act silly.” These moments help sustain Gabbay, someone who truly feels that “once you find your calling, you can’t stop!

---

Pamela Gabbay, M.A., FT, was awarded the Fellow in Thanatology by the Association for Death Education and Counseling and is a Certified Bereavement Counselor. She earned her B.A. in Psychology from California State University, San Bernardino and her M.A. in Psychology from Claremont Graduate University. Pamela is the Program Director of The Mourning Star Center for grieving children in Palm Desert, California. The Mourning Star Center is a community service program of The Visiting Nurse Association of the Inland Counties - Hospice.

Pamela is the Camp Coordinator for Camp Erin - Palm Springs, the first Camp Erin in California. This camp is a free camp for grieving children created in partnership with The Mourning Star Center and The Moyer Foundation. Pamela is also President of the California Chapter of the Association for Death Education and Counseling (ADEC So Cal). ADEC So Cal is an organization dedicated to promoting excellence in death education. Additionally, Pamela is co-owner of Grief Posters.com, a poster company that produces sensitive and educational grief-related posters.

Supporting Children's Grief

Hospice Foundation of America's 2008 Living with Grief Teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. We asked one of our regular contributors, Vince Chiles, to discuss his experiences with children and grief.

---

Vince Chiles

Children often live in the midst of the dying. This fact seems counterintuitive when we think of people at the beginning of their lives, but many children will experience the death of a loved one. In fact one of the most magical things a hospice worker witnesses, is the connection between the terminally ill grandparent and the young child or adolescent. A few years ago, we had a patient whose five year old grandson tucked his grand dad in every night. This was very touching and a powerful reminder of the mystery of the circle of life.

I have seen this connection time and time again, of the young comforting the old in their time of need. The very old and young balance each other and remind us of how our own vulnerability supports the life process. In the Native American traditions there is a simple prayer ‘to all our relations.’ It is often said at the beginning and end of ceremonies to commemorate the actions of the group in relation to those who came before and those who are yet to come. Life is a circle that is connected with death and birth, again and again.

The grieving youngsters’ feelings are real and profound when they lose their ancient guides. The thought of not attending my Aunt Joan’s funeral when she had died thankfully never entered my parents’ minds. All eight of my siblings attended her burial recognizing the finality of life, and validating our grief. There are those families who do elect to exclude youngsters from memorials and funerals. Perhaps they think shielding the child from the presence of the dying and deceased protects them in some way, but I have found this to be a contrary perception that can create more problems. The classic story is that of the Buddha, a prince shielded by all suffering in life, due to an infancy prophecy that the prince would become a holy man. When the young prince had a glimmer of suffering he left the security of his palace to discover the secret of life –desire creates suffering. The king lost his beloved child, to the realities of the world. Children are their own beings who need respect and support through their own grief, not denial or protection.

If we choose not to shield the child from death, how can help guide them through their grief? We can support the grieving child in many ways. It is important to tell the child what is going on with their loved one, and what to expect. ‘Grandma is sick, and she’s not going to get better this time. That means she will eventually die, and we have help from hospice here. They can talk to you if you would like.’ Offering a child or grandchild the services of a hospice social worker can be a great thing for the child or adolescent to prepare for saying goodbye and adjust to the grieving process. When a child or grandchild says goodbye, the parent or grandparent suffers less. It may be a heart-wrenching encounter to witness, but the potential benefits outweigh the consequences of not bidding farewell. Providing grief support resources after some one has died in the form of educational groups, grief and loss camps, support groups, or one-on-one counseling can all help. It is important through that the child be open to these services and that they are able to opt-out or maintain some control if activity becomes to overwhelming.

Children and adolescents grieve differently than adults do. They may need to draw pictures when they are very young to make sense of what has happened, or have some alone time to figure it all out when they are older. I remember a Native American boy I had worked with on the White Mountain Apache Reservation, who was so angry that his father had died when he needed a positive role model in his life. We walked to the White River and started to throw rocks into the water. I challenged him to throw the rocks as far as could across the river, letting go of his anger, and allowing the water to wash away his pain and suffering as his angry rocks were swallowed up by the current.

Finding creative ways to help children and adolescents grieve can also help the adults around them process their loss. Children are grounded in their intuition and haven’t figured out how to rationalize and explain away life’s mysteries. They can draw a picture or express themselves with other creative outlets that inspire us to see their wisdom in spite of their youth. Hospice social workers, bereavement counselors, and volunteers are great resources to families with grieving children and they often provide support to families in need regardless of whether the family received hospice care.

Magic in many instances is an illusion, but the magic in hospice when a child grieves effectively is that they evolve into healthy adults. They learn to see the connections in the circle of life, and recognize the vulnerability we all share. Children who learn to grieve well recognize the interdependence of life, and can appreciate the relationships they have on a deeper level. Helping a child learn how to effectively grief a loss, is a little magic we all could benefit from.

Vince Chiles, MSW

Julia's Life in Pictures

Hospice Foundation of America's 2008 Living with Grief Teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. One of our regular contributors, Elizabeth Uppman, reflects on the role a hospice art therapist played in her and her daughter's life after the death of her son, Gabriel.

---

Elizabeth Uppman

My son Gabriel was 3 when he died. His sister Julia had just turned 6. The following months were rough on everyone, especially Julia, who acquired a whole catalog of fears (dogs, tornadoes) and developed the habit of following me from room to room of our tiny house.

Stephanie, the art therapist from hospice, came for her first visit the week after Gabriel died. Stephanie brought clay and crayons and paints and beautiful big sheets of paper, and she and Julia sat down at the kitchen table to make art. Stephanie's visits didn't magically dissolve Julia's fears or make our going-to-bed battles any better, but for that one hour per week, Julia basked in her attention.

One of their projects was a pictorial history of Julia's life. Julia drew six scenes: her birth, our move from Mexico to Kansas, Gabriel's birth, Julia's first day of school, her fourth birthday, and Gabriel's death. The scenes are connected by round gray stepping-stones. In the middle of the picture is a seventh scene, an imaginary one, in which a white-robed Gabriel hovers over Julia. In cartoon word-balloons Gabriel says, "I see Julia." Julia says, "What, Gabriel?" Gabriel replies, "I see you."

Click here to view a larger image.

Fast-forward a couple of years. We have a new baby, Lucia, and are moving into a new house. Unpacking, I pull a picture out of a box. It is Julia's pictorial history, which Stephanie framed for us as a goodbye gift. "Hey, Julia," I say, "where do you want to put this?"

Julia dashes in from the next room, her long hair flopping. She has been videotaping the new house and wants to get back to it. She looks at her artwork – the blobby airplane, the people with no necks and cauliflower hands – and wrinkles her nose. Clearly, her artistic abilities have matured since then. "Do we have to put it up?"

"Well, we don't have to put it in your room if you don't want to."

She considers. "Can we put it in Lucia's room?"

"Why Lucia's room?"

"Well, she has to learn the story."

The picture is still hanging in Lucia's room, amid a taped-up assortment of Lucia's own art. Just now I went in to look at it. The airplane made me smile, its wings upraised like a bird's. I had never noticed that, in all three of Gabriel's scenes, he is smiling.

Elizabeth Uppman

Anticipatory Grief Prevalent Among Dementia Caregivers

Professor Jacquelyn Frank, of the University of Indianapolis has examined the challenges faced by caregivers of dementia patients.

Frank gathered responses from more than 400 dementia caregivers around Indiana, most of them spouses and adult children of Alzheimer’s patients . . . she was struck immediately by the responses to this open-ended question: “What would you say is the biggest barrier you have faced as a caregiver?”

Though the respondents’ language varied, a computer analysis found that more than 80 percent of them touched on a common theme: “letting go of the person we used to know,” as one person wrote, or “watching your loved one slip away and forget who people are.”

The comments illustrate two previously noted but seldom-studied phenomena seen in those caring for the terminally ill. “Anticipatory grief” is the pain of losing a loved one, felt in advance of the patient’s death. “Ambiguous loss” is the discordant feeling that comes from interacting with a patient who is physically alive but no longer seems present socially or psychologically.

It’s not surprising that such effects would be common among dementia caregivers, but this study is among the first to document their prevalence.

“The fundamental barrier experienced by Alzheimer’s caregivers appears to be a combination of anticipatory grief and ambiguous loss, rather than hands-on care issues,” Frank says.

Hospice Foundation of America's 2007 book, Living With Grief: Before and After the Death, dealt with the concept of anticipatory grief.

But That's Not How It Happened On TV!

Elizabeth Uppman

In an interview, author/surgeon Pauline Chen reflects on why, at the end of life, many patients choose treatments and therapies that offer little hope for recovery. She suggests several reasons for this tendency, including this:

There was a study published looking at the outcomes of cardiopulmonary resuscitation on television medical shows. The success rate was phenomenal on t.v., but in reality very few resuscitated patients ever recover fully. These unrealistic media outcomes can influence how patients and their families view life support.

This study points out an obvious truth that is at the same time very strange: that we gather information about the world from TV, and that some of the information we gather comes from stories that we know aren't true. Take me, for example. I would never admit, with a straight face and right out loud, that I expect the same miracle that happened on the hospital show to happen for me in the real-life hospital. But in my gut, in my childish heart of hearts, I'm not so rational. My gut says: If that family on TV got a miracle, then why shouldn't my family get one, too?

So I think Dr. Chen is onto something. And it makes me wonder why. What is it about these shows that makes us trust them?

Maybe because, unlike most TV shows, hospital shows portray events that could actually happen. While you are unlikely to survive a plane crash on a spooky island in the Pacific, you might actually have a heart attack while driving your car down a busy street. And if the accident is possible, then the recovery ought to be possible, too.

But I think we imagine for ourselves the same success stories that we see on "ER" and "Grey's Anatomy" and "House" for a different, more compelling reason: because that is how our stories are supposed to go. Little Red Riding Hood is supposed to outwit the big bad wolf. Cinderella is supposed to marry the prince. And the little girl who almost drowned but was saved at the last minute by a heroic bystander – that little girl is supposed to get better. It doesn't matter whether that little girl is a TV character or a real person. She's simply supposed to get better. That's the way the story goes.

I remember walking into my son Gabriel's room in the ICU and hearing my husband say, "They asked me the question." I burst into tears. He didn't even have to tell me what the question was – I knew it was about Gabriel's death, and I knew it was part of the wrong story. The right story was the one in which the little boy recovers and goes home with his grateful parents and grows up to become a mathematician. I still love that story, actually, though it's no longer mine.

Elizabeth Uppman

Grieving Alone

This article from Connecticut's courant.com discusses how difficult it can be to grieve the loss of a loved one in isolation.

"Adult children who live far away from home and lose a parent; spouses who have retired far from the community where they spent most of their married life together and become widowed; and elderly individuals who experience a loss and have no nearby support system — all can find themselves experiencing grief in a vacuum."

"That isolation, says Karen Carney, a social worker and bereavement program director at the D'Esopo Resource Center in Wethersfield, intensifies the pain and loneliness caused by the death."

"'When no one in your day-to-day life has a history with the person who has died, you have no way to share stories about the deceased and what they meant to your life,'" says Carney. "'When you are physically removed from the individual's final resting place, you have no 'sacred place' where you can go to connect that person. Those situations leave people feeling very cut off.'"

The article also offers some online resources to those who are grieving alone.

"Area hospice and palliative care programs provide programs and support groups. Many local hospitals offer grief support groups. Some are offered by in-house pastoral services, some by palliative care departments and others are offered by social or nursing services. Churches or other places of worship and senior centers often offer support groups as well. If you're not comfortable with a support group, explore individual counseling. The Association for Death Education and Counseling website, www.adec.org, provides names and contact information for grief counselors and educators."

"A number of online resources offer help as well. At www.webhealing.com, visitors can find articles on loss, links to resources, discussion boards and an "Honor Page," where visitors can post memorials to those they have lost and share thoughts on grief and healing."

Grief Support Group Helping College Students Across the Country

The University of Washington (UW) is starting a chapter of the National Students of AMF (Ailing Mothers and Fathers) Support Network. The organization's mission is to ". . . to support all college students with an ailing or deceased loved one, empower all college students to fight back against terminal illness, and raise awareness about the needs of grieving college students. . .by developing chapters of Students of AMF on college campuses nationwide, providing information and support through our website, awarding leadership scholarships, distributing research grants, conducting conferences on college student bereavement, and holding fundraising events. . ." This article from UW's campus newpaper, discusses why two students are starting the local chapter there and how it will help fellow students in the grieving process.

Coping with Loss with Little Bereavement Leave

A report on MSNBC discusses the challenges of coping with a loss and balancing work committments. Many employers offer limited bereavement leave. From the article:

"Some workers don’t even have access to any type of paid leave when a death occurs. According to a 2007 study by the Bureau of Labor Statistics, 69 percent of workers in the private sector get paid funeral leave. Among companies with 100 employees or more, the number rises to 81 percent, while only 57 percent of small businesses with work forces of under 100 provide funeral leave.
When they do get it, two to three days of paid bereavement leave is the norm for most U.S. businesses and there are no signs that will be changing any time soon. 'That’s the rule of thumb,' says Peter Ronza, compensation and benefits manager with the University of St. Thomas in St. Paul, Minn., and an expert with the Society for Human Resource Management.

"But is it enough?

"'Three days is a tragedy,' says Russell Friedman, author of 'The Grief Recovery Handbook' and executive director of the Grief Recover Institute. 'Some companies are extraordinary and have big hearts when it comes to giving time off after a death, but many are stuck in the dark ages.'
Workers need at least a week, he says, to deal with all the logistics surrounding a death and burial, especially given many of us don’t live near our loved ones these days. Not to mention, he adds, that people need time to grieve the loss because they won’t be as productive right after the death of someone close."

The article suggests finding out what your company's bereavement leave policy is now, before you need it. Check out the message boards for this article to see what other people are saying. And if you are dealing with a loss while still needing to work, the article offers this advice:

• Grief breaks. Take snippets of time away from you desk to cry, or to have time to recoup.


• Get a phone or e-mail pal. Connect with someone you know and trust and tell them if you’re hurting, or having a particularly hard day. Don’t let the feelings build up inside.


• Get writing. You don’t have to start a journal. Just write out your thoughts from time to time, especially if you don’t have someone to communicate with while you’re at work.

Holiday Memories

For many years, Rabbi Earl Grollman has contributed a column, "Because You Asked", to HFA's Journeys newsletter. Rabbi Grollman is a well-known author in the field of grief, and his writings offer both practical suggestions and comforting words to grievers. Here Rabbi Grollman addresses a common question: How do families cope with holidays after the death of a loved one?

---

Dr. Earl A. Grollman

This is my first Christmas, in forty-six years, without my beloved father who died a few months ago. We want to remember him fondly but don't want to turn the holiday into a sad funeral-like observance. Do you have any recommendations for meaningful home-based family observances?

The power and comfort of personal rituals can be therapeutic gifts. Of course, each family must decide individually how best to commemorate their loss as they celebrate the holidays. The following are suggestions of how some bereaved people have mingled their tinsel with tears.

"We start with a moment of silence or someone offers a toast or prayer whenever it seems appropriate."

"Grandma loved flowers so we place a single rose on the festival table in her memory."

"Ceremoniously putting a special ornament on the tree symbolizes Dad's favorite hobby."

"In memory of our child, we dedicate the 'shammes, the 'servant' or 'pilot light' from whose flame the other Chanukah candles are lit."

"We write special notes to my mother, put them in her Christmas stocking and then read them to one another during dinner."

"During the meal, I ask, 'What leaps into your mind when I mention Uncle Bill.' We go around the table, starting with children to adults. It's a memorable and spontaneous stream of stories that bring enjoyment, laughter, and pleasure." (A tape recorder may be placed near each speaker to be later transcribed for a permanent scrapbook of memories.)

"The chair where my grandfather always sat is given to the youngest grandchild to designate the continuity of generations."

"My brother always munched on jelly beans, so we have a few around and remember him and smile."

"We look through photo albums and show home movies and recall those 'good ole days'."

"Our sixteen-year-old son wrote a poem that he reads in his sister's memory."

"We play his favorite recording: Frank Sinatra's "I Did It My Way."

For many, moments of reminiscences are one of the truest measurements of their enduring love. For as Solomon said in the Song of Songs: "Love is greater than death."

Rabbi Grollman

Review of Bereavement Studies Points to Increased Health Risk After Loss of a Spouse or Child

A review of studies on bereavement by Dutch experts show that the bereaved have an increased risk of death, illness and emotional distress. The researchers looked at studies from the U.S., Europe, and Australia. Read the summary from The Lancet online.

Lighting Candles for Children

Elizabeth Uppman

This coming Sunday, December 9, is the Compassionate Friends Worldwide Candle Lighting. From 7:00 to 8:00 p.m. in every time zone, people will light candles to honor children who have died, creating "a virtual 24-hour wave of light." It's believed to be the largest mass candle lighting on the globe.

My family first participated in the Worldwide Candle Lighting in 2000, to honor my son Gabriel. What I chiefly remember about that first year was how my 9-year-old nephew wouldn't stop playing with his candle. We had bought scented votives, one for each family member, and had placed them in glass holders like tiny globes spread out across the dining-room table. My nephew tilted his candle to make the wax run, tipping it and twirling it until the inside of his globe was coated with wax and soot. All around him, the family murmured about Gabriel, how brave he was, how resilient, how sweet.

Worldwide Candle Lighting

At one point during these murmurings my nephew looked away suddenly, as if to avoid a slap. It startled me. I noticed how hunched his shoulders were, how heavy his head looked. For the first time I wondered what it must be like, to be 9 and to know your cousin is dead. I imagined, for the first time, what he might be thinking: Would they say those things about me, if I were the one? Would they say I was brave? Would it hurt?

This year will be our eighth Worldwide Candle Lighting. My nephew is in high school now, and probably too busy to come. I'll miss him. It would have been easy, at 9, to exchange his candle for the television in the next room -- to leave us to our grieving, to act as if nothing had happened. But he didn't. I'm grateful for his patience that first year, for his uneasy faithfulness to a global ritual.

Elizabeth Uppman

---

Pictured above: David Ramos Ocasio of Cidra, Puerto Rico, daughter Bianca (left), and niece Aeris Rivera remember David's brother Alex, who was robbed and murdered while at work in the family business in 2004. They were among 500 who gathered in Parque Central in San Juan, Puerto Rico during a Worldwide Candle Lighting service. Photo courtesy of Tristan Reyes.

An Inordinate Response to Loss

Elizabeth Uppman

A dappled summer morning, a public park, a cluster of children – and me, screaming with rage. The boy I was screaming at was not even my own. I had caught him holding a bucket of water over my daughter’s sandcastle, and fury had lit me up like an avenging angel.

Through my yelling I could observe everything around me, as if the mild-mannered, everyday me were looking out from inside the new, furious one. I watched the other mothers gather their children, carefully avoiding my eyes. The boy’s mother, who had spent the last twenty minutes saying it was time to go (“…and I mean it this time!”), finally got off her park bench, grabbed him by the arm, and hustled him out of there. He grinned at me as she pulled him away, a cocky grin. But my daughter was smiling at me over the top of her sandcastle, so I went back to my magazine, satisfied.

It wasn’t until late that night that I considered the reaction of those other mothers, how wary they were of me – me! I wondered, for the first time, what had possessed me. Where did all that anger come from? Might it have had anything to do with grief?

I remembered that day in the park when I read this particularly thoughtful sports column. King Kaufman at Salon.com explores the outpouring of grief over the sudden death of Washington Redskins safety Sean Taylor. Interviewing a grief counselor, Kaufman asks: “OK, so let’s say I'm a fan of the Washington team and, hypothetically, let’s say my mom died five years ago. And I handled it pretty well. Now I hear about Sean Taylor, a person I never met and don’t know very much about... And I’ve gone to pieces over it. Am I making that up or does that happen?”

The counselor’s answer: “It definitely happens. And as grief counselors, when we see someone have an inordinate response to a loss, we're oftentimes looking at what else is going on.”

An inordinate response to a loss. Well.

A year and a half before that lovely, dappled morning, my 3-year-old son had died of pneumonia. I thought I had handled it pretty well. The nausea was more or less gone, as was the barely constrainable impulse to talk about him, and me, and the world of loss we had lived through. I could now trust myself to appear in public with all my buttons buttoned, and I usually remembered what day of the week it was and how to put gas in the car.

But that upraised bucket was too much. The universe had shown me, definitively, how easy it is to hurt small children – my children. I simply could not to allow any more of it.

I sometimes think of hunting down those mothers in the park to apologize for my craziness. I would tell them no, I’m not crazy – just grieving. Sometimes it looks like the same thing.

Elizabeth Uppman

Coping With Grief During the Holidays

The holidays are often a difficult time for those who are bereaved and coping with loss. A common question asked by those mourning a loved one or struggling to make sense of other losses is, "How can I get through the holidays?" There is no single answer of what one should or shouldn't do. We offer one guiding principle: do what is comfortable.

The key to coping with grief during the holidays is to find the way that is right for you. Some people find it helpful to be with family and friends, emphasizing the familiar. Others may wish to avoid old traditions and try something different. Others will find new ways to acknowledge the season.

Some suggestions for coping:

• Plan for the approaching holidays. This might be a difficult time for you. The additional stress may affect you emotionally, cognitively, and physically; this is a normal reaction. Be prepared.
• Recognize that the holidays might not be the same. Expecting everything to seem the same might lead to disappointment. Doing things a bit differently can acknowledge the change while preserving continuity with the past.
• Be careful not to isolate yourself. It's all right to take time for yourself but don't cut yourself off from the support of family and friends.
• The holidays may affect other family members. Talk over your plans and share your feelings. Respect other's choices and needs, and compromise if necessary.
• Avoid additional stress. Decide what you really want to do, and what can be avoided.

With Alzheimer's Disease, the Losses Come Sooner

Elizabeth Uppman

Recent news reports tell the awkward last chapter of the love story between former Supreme Court justice Sandra Day O’Connor and her husband, John O’Connor. He was diagnosed with Alzheimer’s disease 17 years ago. The family recently placed him in a long-term care facility, where he has fallen in love with a woman who lives at the same facility. The O’Connors’ son, Scott, says his father acts like “a teenager in love… sitting on the porch swing holding hands.”

Alzheimer’s experts say these kinds of attachments are to be expected, and that the patient is not to blame. Kathleen Waldron, interim director of the ASU West School of Aging and Lifespan Development, says “A person who has dementia does not live in the same world the rest of us live in, and their reality may be completely different. You cannot take anything a person does with dementia personally.”

Wise words, but not easy to live by.

My grandmother has had Alzheimer’s for almost as long as John O’Connor. When I visit her at the nursing home, I wheel her down to the quiet room and sit facing her. I rub lotion into her hands, ask her how her day is. When nobody else is around, I sing. Grandma looks at me with a puzzled expression. Her eyes are curious but blank. She was once a modest person, shy and self-effacing. Now she stares straight at me, and I stare back. She doesn’t mind the kind of directness that once would have been unthinkable. She doesn’t hide anything because she has nothing left to hide.

It must be difficult for Sandra Day O’Connor to see her husband holding hands with another woman, just as it’s difficult for me to withstand the directness of my grandmother’s stare. This is not the way the person I love is supposed to behave. It’s sad – devastating, really – the things a disease can take away from us, things we thought were absolute. It makes you wonder, grimly, where the bottom line is, where is hidden that last and most precious thing that makes us ourselves, and whether that thing can be taken away, too.

Every once in a while my grandmother gives me what I’m waiting for: a smile. She smiles the way she always did, shruggingly, in a “well, here we are again” kind of way. She used to smile this way at the mistakes we kids made, the jelly on the carpet, the gum in the doll’s hair. Well, here we are again, her smile would say, and then she would hunker down and fix it.

I wish I could do the same for her – I wish I could hunker down and fix the Alzheimer’s that is erasing her story, line by line.

Elizabeth Uppman

Grief and Dementia: Twice the Loss

How do you help someone through losing a person twice? I don't know, but I’m trying to figure it out. I guess by doing what I have been doing—being here for him, letting him talk when he needs to, being silent when he needs that, and through it all, just letting him know that he doesn't always have to be strong.

Earlier this year, it was time for my boyfriend's family to decide whether or not to seek hospice care for "Granny." She was 96 years old, in frail condition, and suffering from dementia; to me, it didn't seem that hard of a decision. But she wasn't my grandmother and, while I am a part of his family as he is part of mine, this simply wasn’t my decision to make. When his family did elect for hospice services, those who weren't against the decision, my boyfriend included, acknowledged that hospice was in Granny’s best interest.

I never knew Granny; my only knowledge of the woman she was came through her grandson's words. She was clearly a very special woman, and he had already mourned her loss, as her personality and her memories—what made her the woman she had been—were gone. However, with the acknowledgment that the Granny they had known was gone, on my boyfriend's part, at least, there was a great deal of guilt, and a big part of that was due to the belief that when Granny did die, there would be no more room for grief. I never believed, not even for a second, that he was right, but instead of trying to convince him there would be grief when her body died, I tried to help him come to peace with the fact that since she was already gone, there was no reason to feel guilt, and it did not make him a bad person. I'm still not sure if I handled it right, but telling him there was no reason to feel guilt because he would grieve seemed unnecessarily cruel at that point.

Dementia is a cruel disease. It forces you to lose someone twice, first when the personality goes and then when the body dies. Seeing it as a very concerned observer was hard, experiencing the actual pain of losing someone twice must be excruciating. When Granny's body died it wasn’t much more than an empty vessel, but the body was still the last living connection to the woman she had been, and I was right, horribly right. He did grieve over the loss. He's not a man who talks much about his feelings, so the night she died, I just sat there next to him and held his hand while we watched his favorite movie. At first, I worried about him, as there was no sign of grief, and I wondered if he had been right, after all. But what initially seemed to be a lack of grief was actually a kind of numbness. He carried on as if nothing had really changed, and I guess it was his way of coping or trying to be the strong man he felt his mother and sister needed him to be, but eventually the grief came, and that was as hard to bear as his guilt had been, but at least the grief was something I could understand. But even with that understanding, I still struggle with how to help him cope with his loss.

Susan Belsinger

Evaluating Advice and Information in Grief

Dr. Kenneth J. Doka

Often, when we are in the midst of grief, we receive the advice of others. Sometimes it is solicited, other times it is simply offered. It may be from family, friends, or co-workers. We may even seek out the advice – eagerly reading an article or advice columnist in the paper, or surfing the Net for information.

Problems can arise when the advice seems troubling to us. Or we may be torn by conflicting suggestions – one person may advise tossing out all reminders and cleaning the closets while another recommends that we go slowly, making decisions after some thought and time.

How do we sift through all those different opinions? How do we make sense of the conflicting advice?

Remember Grief Is an Individual Experience

In the past decades, our understandings of grief have changed considerably. We no longer look at grief as a predictable set of stages. Rather we view grief as a highly individual process influenced by many factors such as our relationships with the person who died, the ways that we cope, the nature of the death, as well as a range of social, spiritual, psychological, cultural, and other factors. Some of us may respond to a death with deep and heartfelt emotion, while others may respond by focusing on work or other activities. We should be suspicious of any advice that tells us how we should feel and how we should grieve.

One Size Does Not Fit All

Since grief is a highly individual process, it follows that we may find support and solace in our own different ways. Support groups are a wonderful example. Support groups can be highly useful – validating grief, offering support and respite, suggesting options as we cope with loss, allowing people to help others even in the midst of grief, and extending hope in a difficult time. Yet, support groups are not necessarily for everyone. Some may have adequate support among their circle of friends. Others may find effective, perhaps more private ways, to cope while still others may be too needy for the sharing environment of mutual support. In my support group, I emphasize that we can tell what helped us rather than what would help another. We need to be cautious whenever someone is insistent that this is what we must do!

There Is No Timetable to Grief


Grief is like a roller coaster – full of ups and downs, highs and lows. Like a roller coaster, for many of us, the early part of the journey may not be the most difficult. Here the shock of the loss and the support of friends cushion us. Generally, depending on the nature of loss, most of us resume prior roles. If we are not functioning in our major roles – work, school, or home – or if we are resorting to drugs or alcohol to cope, it may be time to seek additional help. In addition, if over a period of time, maybe even a year or two, we experience the lows as often and intensely as ever, we may also want assistance in assessing what seems to be complicating our grief.

Say Goodbye to Closure

We never get over a loss. We learn to live with it. For most of us, pain lessens over time and we function at least as we did prior to the loss. Yet, even years later, we may, at special occasions, deeply miss the person who died. For example, when my first grandchild was born, I missed sharing it with my parents – even though they had died a decade ago. Distrust any counsel that suggests or promises that elusive “closure.”

We Can Trust Ourselves

Perhaps our inner voice is our best source of advice. What helped us in the past? This is often good counsel for the present. Moreover, as we hear the recommendations of others – in print or elsewhere – we can ask the question, it may have worked for others, but does it sound right for me? We are likely to know that answer.

Dr. Kenneth J. Doka

Association for Death Education and Counseling Addresses Negative Perceptions About Grief Counseling

On October 9, ABC television aired an episode of the Boston Legal series titled "The Chicken and the Leg." During this program, two lawyers took on the case of a woman who alleged that a psychologist's therapy sessions caused her husband's suicide. The term "grief therapy" was used, and it was implied during meeting between the respective attorneys that participating in therapy directly caused the husband's death. More specifically, it was stated that research suggests that four out of 10 individuals who seek grief therapy are harmed by the experience.
The Association for Death Education and Counseling (http://www.adec.org/) recently wrote to ABC Television and the producers of Boston Legal, expressing concern over the misperceptions about grief and the usefulness of grief therapy promulgated by this episode.

On Grief: From One Child to Another

Milly Bell was seven years old when her father died from a brain tumor. With the encouragement of her mother, she used drawing and painting to help ease her grief.

When Milly learned that she isn't the only kid to have lost a parent, she wanted to share what she had learned. The resulting book, My Daddy is Dying, was assembled by her mother and is now being published with help from her father’s former employer and FORCE, a UK cancer survivor charity.

"I wrote about the things I found difficult like going to sleep. I hope that my book helps other children and lets them know they are not alone." (BBC)

Some of Milly’s suggested activities include: making a color-coded “feeling chart”; creating a recipe for a “happy feelings cake” and drawing a picture of what it would look like; and, drawing a “circle of life” diagram to illustrate how all living things, including plants and animals, live and die.

PDF’s of some of Milly’s activities are available from FORCE’s website.

As War Continues, Children Continue to Deal with Grief

Children typically revisit a loss as they grow and change developmentally. This article in the New York Times examines how children of soldiers killed in Iraq are dealing with these losses, and how the Tragedy Assistance Program for Survivors (TAPS) helps them cope with the unique issues they face.

When is Medication Appropriate for Grief? Dr. Kenneth Doka Shares his Thoughts

Dr. Kenneth J. Doka

A New York Times blog entry dated October 10 ("For Some Bereaved, Pain Pills Without End") reports that Columbia University researchers are studying anti-anxiety prescription drug use by the elderly. Although not specifically looking for trends in the treatment of bereavement, researchers inadvertently discovered that over half of the 33 Philadelphia-area doctors included in the study indicated they had prescribed potentially addictive anti-anxiety drugs specifically for bereavement. In addition, researchers interviewed 50 elderly long-term users of the drugs. Twenty percent said they were prescribed these drugs for bereavement, but then never ceased using the drugs, resulting in an average use of nine years.

As a professor of gerontology, certified thanatologist, certified counselor and minister, I am often asked if people who are grieving should receive medication for their grief.

My answer is never black and white, because the alternatives are really more nuanced. Whether grief or some other condition, it is medically irresponsible to prescribe any drug – antibiotics, pain relievers, psychotropic drugs -- without doing a full assessment of a patient and the situation. Medications should be used when grief is highly disabling, that is, when that patient (after the initial period of mourning) is not sleeping, eating, or able to function in his or her normal role, such as caring for children or going to work. And, if medication is prescribed, it should always be prescribed along with therapy, but never instead of therapy.

In the case of grief, the assessment should not be based on the nature of one’s loss but how the person is coping with a loss. If the measure of need is based on the nature of loss, why not give funeral directors the ability to write prescriptions?

Ken Doka, PhD, MDiv, is a senior consultant to HFA and a professor of gerontology at the College of New Rochelle in New York.

Supporting Children's Grief Through Shared Experiences

When a family deals with loss, children need special support in their grief. Reporter Maja Beckstrom, in her article The ABCs of Grief, highlights the stories of some families in the Twin Cities who found support from professionals and other families dealing with loss.

For many young people, learning that other children are coping with grief helps them to feel less alone. Read an article by a 14-year-old boy writing about his experience of loss.

Memory Bears Help Families Remember Their Loved Ones

Hospices around the country have found that creating a memory object can be very beneficial to a bereaved family. Participants in HFA's 2007 teleconference, Living With Grief: Before and After the Death, learned about Memory Bears—teddy bears sewn by VITAS hospice volunteers using a piece of clothing or other material from a loved one who has died. The video clip above is of a hospice volunteer who makes the bears for bereaved families.

Other hospices have made Memory Quilts to remember loved ones. Harry Hynes Memorial Hospice in Wichita, Kansas created a beautiful woven tapestry to memorialize lost loved ones. The tapestry won HFA's Call for Artwork contest for the cover of its 2007 Living With Grief book. The contest is now underway for the 2008 book cover, Living With Grief: Children and Adolescents.

Eight Myths about Children, Adolescents, and Loss

Note: This article by Kenneth J. Doka, PhD, is featured in the Helping Young People issue of Journeys - A Newsletter to Help in Bereavement. Journeys is published monthly by Hospice Foundation of America.

Myth 1. Children do not grieve, or only grieve when they reach a certain age. Children grieve at any age. The way grief is manifested will vary, depending on the child’s age, development and experiences. It is important to remember that children may grieve in ways different from an adult.

Myth 2. The death of a loved one is the only major loss that children and adolescents experience. Children and adolescents experience a range of losses. The loss of a pet, dreams, separations by divorce or relocations, losses of friends or relationships, or losses due to illness or death can generate grief reactions.

Myth 3. It is better to shield children from loss. They are too young to experience tragedy. Although we’d like to protect children from loss, it is impossible. Exclusion can increase fears and breed feelings of resentment and helplessness. It may isolate the child or adolescent at a time when they need the support of adults most.We can support, teach and model our own ways of adapting to loss and include rather than exclude children and adolescents.

Myth 4. Children should not go to funerals or children should always attend funerals.
Children and adolescents should have the choice as to how they wish to participate in funeral rituals. They will need information about the funeral, options on how they may participate, and support from caring adults as they make their choice.

Myth 5. Children get over loss quickly.
No one gets over significant loss. Children, like adults, will learn to live with the loss and may revisit that loss at different points as they go through life.

Myth 6. Children are permanently scarred by early, significant loss.
Most people, including children, are resilient. While loss can affect development, solid support and strong continuity of care can assist children as they learn to live with loss.

Myth 7. Talking with children and adolescents is the most effective approach in dealing with loss.
While there is much value in openly communicating verbally with children and adolescents, there are approaches that allow the child or adolescent creative ways of expression. Play, art, dance, music, activity and ritual are examples of creative modes of expression that they may use to express grief and adapt to loss.

Myth 8. Helping children and adolescents deal with loss is the responsibility of the family.
Families do have a critical responsibility. But it is a responsibility shared with other individuals and organizations such as hospices, schools, faith communities, as well as the community at large. In times of significant loss it is important to remember that the ability of family members to support one another can be limited.

Grief Camp Offers Support for Children of Deceased Military Personnel

The Seattle Post Intelligencer published an article about a TAPS camp (Tragedy Assistance Program for Survivors) for children of military personnel who have been killed in Iraq and Afghanistan. Sixty-two families in Fort Lewis took part in a day-long program that offered bereavement support for both adults and children. Learn more about TAPS and their role in support military families through grief on their website.

HFA's 2008 teleconference and book, Living with Grief: Children and Adolescents, will focus on the experience of grieving children and adolescents and how we can best support them during this time. "Military Children and Grief," written by a TAPS peer mentor, looks at how loss for children in the military community is different.

Published September 23, 2007

Family Structure Can Affect Grief

With more and more U.S. single parents, blended families and step and half-siblings, some are "shut-out" of an illness or funeral, a U.S. expert said. Diana Nash, a professor of psychology at Marymount Manhattan College in New York and a counselor specializing in grief and bereavement, said ex-spouses and first children of the deceased can be left out of an illness and funeral because the new family doesn't want them around.

Published September 24, 2007.

Death and Bereavement in the LGBT Community

An insightful article about bereavement in the LGBT (Lesbian, Gay, Bisexual, Transgender) community.

Posted August 22, 2007.