“Every loss is unique. The truth is, the worst loss is the one that is happening to you, the one that has picked you up and thrown you down and left you struggling to put your life back together.”
Author, Elizabeth Devita-Raeburn
When I was 20 years old, I was awakened in the middle of the night to the terrible news that my 17-year-old brother Scott and cousin Matthew had been killed together in a car accident. It seemed inconceivable that my brother had died. My brother, who I had grown up with, shared a history with, and expected to grow old with, was suddenly gone forever from my life. Scott had unruly blond curls and bright green eyes. He was very athletic, devoured Twix candy bars, was a NY Jets fan and loved to play practical jokes. I envisioned us attending each others’ college graduations and weddings, raising our kids together and growing old together.
Scott’s death turned my world upside down and put everything I ever believed into question. We expect a natural order to the losses in our lives with our grandparents dying first, followed by our parents and then eventually our siblings. Our siblings share a childhood history and take this journey with us, as parallel travelers in our lives, wrote Elizabeth Devita-Raeburn in her book, The Empty Room: Understanding Sibling Loss. In fact, most siblings will spend 80-100% of their lifespans together (Packman, Horsley, Davies, & Kramer, 2006). However, all of us are not so fortunate, as two million people each year become bereaved siblings (Hogan & Desantis, 1992). Studies show that bereaved siblings grieve for not only their brothers or sisters, but for the loss of future plans together and the opportunity to grow old with someone who knew them at every developmental life stage (Horsley, 2003; Marshall, 2013). Many consider their sibling to be their best friend. When one dies the other feels the loss intensely. Lyn, whose sister Donna died at age 49 of breast cancer, remembers her sister this way, “Donna was my trusted confidant, my witness and my cheerleader. She was there for me and I for her. A glance into her eyes affirmed my joyous reality: She was both my sister and my best friend.”
As with Lyn’s story, my brother and I were also very close, and early on in my grief the pain was so great that not only did I not know how I would survive, I didn’t know if I wanted to. I honestly thought I would die of a broken heart. Many other siblings’ have felt the same way after the death of a brother or sister. In interviewing Lauren and Kerri Kiefer after the death of their brother (firefighter Michael Kiefer who died in the 9/11 tragedy), they described sibling grief this way: “It’s like you’re in a foreign country now and you were just dropped there. You have to learn to adapt to this new world and this new way of life and it’s not easy.”
Sibling loss changes us in countless ways, There are numerous stories of siblings, including myself, who have changed their career trajectories as a result of their sibling’s death. After my brother’s death, I changed my major to psychology, wrote my doctoral dissertation on the sudden death of a sibling and have devoted my career to helping others find hope after loss. Another person whose career was greatly influenced by sibling loss is social worker Andrew Tartler, whose sister died of a brain tumor when he was just 5 years old. As a result of her death, Andrew became an administrator of the Children’s Inn, a National Institutes of Health residence for families with a child who has cancer. He also founded Camp Fantastic, a summer camp for well siblings who have a brother or sister with cancer.
Meanwhile, Dr. Robert Gallo, who was just 13 when his 6-year-old sister Judy was diagnosed with leukemia, became the chief of the laboratory of tumor cell biology at the National Institutes of Health. One of his most significant discoveries to date has been isolating a retrovirus that causes leukemia, the very disease that killed his sister.
As difficult as sibling loss is, I am here today to tell you, that I did survive and eventually thrive. I have interviewed and worked with thousands of bereaved siblings who have gone on to thrive as well– and you can, too. Here are some tips and tools you can use to find hope again:
A sibling death often leaves surviving siblings feeling disempowered and victimized. Participation in memorial events, family gatherings and other activities meaningfully associated with the deceased sibling can be opportunities to focus, express emotions and feel empowered. Elizabeth DeVita-Raeburn found during interviews for her book, that as siblings move toward an active style of coping with grief, they begin to heal. For example, Dr. Stephen Chanock, a pediatric oncologist at the National Institute of Health, devotes his life to trying to find a cure for cancer. Ironically (or not) Dr. Chanock has an office just 500 feet away from the intensive care unit where his brother died. Other examples of active coping may include seizing opportunities to talk about your deceased sibling. What are other examples of active coping? You may choose to volunteer in honor of deceased sibling, make a memorial toast during a holiday party, or plant a memory garden.
Finding any creative way to actively cope by honoring and memorializing your sibling can help you heal. After her sister Linda died of a rare form of childhood cancer, Pleasant Gill White founded a nonprofit organization, The Sibling Connection, whose mission is to provide resources for bereaved siblings. As Gill White points out, “They used to tell us that you had to let go of the person who died and now we understand that it’s all about going on with your life, remembering and staying connected to the person. If you don’t, you’re going to be blocking a part of your life and that can rob you of needed energy.”
Explore Internet Sites
The internet can be a valuable resource and virtual online community 24/7 for individuals dealing with sibling loss. In on-line virtual communities, grieving siblings’ can come together as a community and grieve online anytime, so they feel less alone. Social networking sites such as The Compassionate Friends Sounds of the Siblings, Facebook page, offers a place where bereaved siblings’ can express condolences, find grief support and get advice from others. Facebook also hosts thousands of memorial pages, where friends and family can post pictures, videos, and memories about those who have died, and provides a place where bereaved siblings can gain support from others.
I co-founded The Open to Hope Foundation, www.opentohope.com to help support people after loss. Today, Open to Hope is one of the most visited grief support sites on the internet. Open to Hope provides thousands of articles, hundreds of radio shows, cable T.V. shows, webinars, and youtube videos devoted to finding hope after loss. Much of the content on Open to Hope is specific to sibling loss. Chantal, wrote to Open to Hope saying: “I lost my sister six months ago today. I’m 25 and none of my friends know what I’m going through because their siblings are still alive. But it’s a relief to know others are out there who have survived and understand my pain.”
Attend Support Groups
Bereaved siblings often benefit from talking with others who have experienced a similar loss. This can help them feel less alone in their grief, and show them how others have coped. Currently in the United States, there are more than 300 grief centers and over 150 peer support programs. The largest peer support program for bereaved families is The Compassionate Friends, www.compassionatefriends.org with over 700 chapters Internationally. This organization offers ongoing programs and peer support groups that can be an opportunity to connect and receive support from other bereaved siblings.
Foster Expressions of Continuing Bonds
When a sibling dies, we lose the relationship we once had, but we don’t sever our connections with our siblings. We continue those bonds in new and different ways. Bereaved siblings often report praying to their deceased brother or sister or having imaginary conversations with them. They continue to think about their sibling, particularly during anniversary dates, such as graduations, weddings, birthdays, holidays and other milestones. These events can be used as a way to honor the life of their sibling.
In fact, research has shown that maintaining a connection with our deceased loved ones is not only adaptive, it is an integral part of healthy adjustment (Packman et al., 2006). Sarah, 21, whose brother Bruce died last year after a long battle with cancer, had his favorite NY Jets sweatshirt made into a teddy bear that she sleeps with at night. Others carry their brother or sister’s picture with them, wear their clothes, or listen to music that reminds them of their sibling.
Devita-Raeburn found that as bereaved siblings grow older, their wish to stay connected with their deceased sibling grows even stronger. For example, Meredith’s brother Jon loved running marathons. After he died of neuroblastoma cancer, she began running marathons and donating the money she raises to cancer research. Running has given Meredith a way to keep Jon with her as she moves into the terrain of her own future, one that she looks to more willingly now. She has invented a new relationship with her brother, one that acknowledges that he is both gone from her life and present too. Running has helped Meredith to redefine life after loss.
In Conclusion: Positive Growth
Although the death of a sibling is a difficult life event, research has shown that bereaved siblings also experience positive growth. In one study, siblings’ from 40 families who had lost a brother or sister to cancer were interviewed. These bereaved siblings’ reported increased maturity, greater compassion, and more motivation as a result of the sibling death compared to normative samples (Foster, et al., 2012). Forward & Garlie (2003) discovered that positive changes reported by bereaved adolescents included (a) less risk taking, (b) more displays of affection, (c) a deeper appreciation of life, (d) more maturity, (e) a greater life purpose. Bereaved adult siblings also had greater empathy and were more likely to support others who had experienced a death (Davies, 1991).
Bereaved siblings may not always look like they’re grieving, but the wounds within them run deep. Nevertheless, many bereaved siblings eventually learn how to find a new normal and create a new relationship with their deceased siblings. They don’t forget, move on and have closure, but rather they honor, remember, and incorporate deceased siblings into their lives in new ways and continue bonds.
With time and support, you will go on to transform your life and create a new normal. I have found meaning, hope, and joy again, and met many wonderful and caring people through organizations such as The Compassionate Friends (www.compassionatefriends.org), the Elisabeth Kubler-Ross Foundation (www.ekrfoundation.org) and the Tragedy Assistance Program for Survivors (www.taps.org). Today I keep my brother’s memory alive through the stories I share with others. Our siblings continue to live forever in our hearts. They are our guiding lights and will always play an important role in our lives. If you’ve lost hope, please lean on mine, until you find your own.
Davies, B. (1991). Long-term outcomes of adolescent sibling bereavement. Journal of Adolescent Research, 6 (1), 83-96.
Devita, E. (1993, January). Sibling Survivors; How Losing a Brother or Sister to Cancer Can
Recast a Child’s Destiny. The Washington Post, pp. Z10.
Devita-Raeburn, E. (2004). The empty room: Surviving the loss of a brother or sister
at any age. New York: Scribner.
special issue: death and adolescent bereavement. Journal of Adolescent Research, 6(1), 70-82.
Forward, D.R., & Garlie, N. (2003). Search for new meaning: Adolescent bereavement
after the sudden death of a sibling. Canadian Journal of School Psychology, 18 (1/2), 23-53.
Foster, T.L., Gilmer, M.J., Vannatta, K., Barrera, M., Davies, B., Dietrich, M., Fariclough, D.L., & Gerhardt, C. A. (2012). Changes in siblings after the death of a child from cancer. Cancer Nursing, 35 (5).
Hogan, N., & DeSantis, L. (1992). Adolescent sibling bereavement: An ongoing attachment. Qualitative Health Research, 2, 159-177.
Horsley, H. (2003). Effects of a parent guidance intervention on communication among adolescents who have experienced the sudden death of a sibling. University of San Francisco. Available from University of San Francisco Research Repository.
Horsley, H., & Horsley, G. (2007). Teen Grief Relief: Parenting with Understanding, Support,
and Guidance, Rainbow Books, Inc.
Horsley, G., & Horsley, H. (2011a). Communication Technology in Grief Counseling &
Research. Book chapter, Open to Hope: An International Online Bereavement Community. Springer Publishing.
Horsley, G. & Horsley, H. (Hosts). [2006, June 29]. The world lost a hero, we lost our brother.
(Internet radio broadcast). Open to Hope Radio. Retrieved from http://www.opentohope.com.
Horsley, H. & Patterson, T. (2006). The effects of a parent guidance intervention
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death of a sibling. American Journal of Family Therapy, 34(2), 119–137.
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Magazine. Retrieved September 3, 2012, from the World Wide Web: http://www.time.com/time/business/article/0,8599,1951114,00.html
Marshall, B. (2013). Adult sibling loss; stories, reflections, and ripples. Baywood
Publication, New York.
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By: Dr. Heidi Horsley
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Sometimes there are no words that can help assuage grief. “I’m sorry for your loss” falls flat when a mourning mother is standing next to her young child’s open casket, framed with flowers and cards of sympathy. You might feel inadequate, your aching heart racing with best intentions, yet sometimes this anxiety moves one further away from being a source of comfort.
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The difference is whether you have the courage to reach out and acknowledge someone’s pain, or not. I’ve realized through our experience how vitally important it is to have that pain recognized.
Sometimes this means going beyond your comfort zone. With this effort however, is the benefit of personal growth and healing – it’s the law of compassion in action: what you give, you receive, in multiples.
I know this because of the courageous compassion that has been extended to me, at times from the most unlikely people. Not the professionals or those who have received trauma-informed training, but from individuals who have a genuine spirit of kindness, caring and concern. This can be taught, and even practiced, and benefits the giver as much as the receiver.
Here are 5 ways you can practice compassion in action:
Being Present. We tend to talk over our nervousness, wanting to fill empty space with witty commentary. Sometimes there are no words. At these times it’s best to show up, and be present: holding space for grief, and providing loving and supportive energy. The most appropriate comment ever said to me was, “There are no words.”
Compassion in Action. Compassion has two components. The first is empathy. Empathy is when you feel someone’s pain, and this can be painful! The second element is the action part – when you do something to help ease that pain. That is when all the love and energy you give out comes back to you – when the line between the giver and receiver is blurred. It is not enough to empathize from a distance – the benefit to both comes from action. Sometimes all that means is showing up.
Say Their Name. I’ve often heard that people don’t mention my son’s name because they ‘don’t want to remind me’ or, ‘don’t want to make me feel uncomfortable.’ As someone who has known great loss, I realize how misguided this is. Just as your own name is the sweetest sound, the name of your beloved is the same. This helps validate their existence and honors your pain at the same time. Sometimes going to a family function and never hearing Jesse’s name, I wonder if he ever existed at all except in my imagination.
An Act of Love. Do something that honors the memory of the beloved. The actions I most appreciate are when people remember Jesse in special ways. A graduate put his picture and message on his cap. An athlete wrote Jesse’s name on his shoes. An art student made a pencil sketch of his face. A family decorates a statue erected in his honor every Easter. These actions help fill the void and reassure me that his memory lives on in the lives of others.
Don’t Stop. Grief has no time limits. We see others wanting to move on, past the pain. The family sees no end in sight. Be aware of holidays, these will be forever difficult. Be sensitive to anniversaries and birthdays. A simple acknowledgement might be like a rope that is dropped into a pit of despair and just enough of a lifeline to offer a glint of hope that day.
The beauty is that we can find meaning in our own suffering by having the courage to step outside our pain and being in service to others. Remember this when you sit down next to someone having a bad day. It might be the most profound comfort is a hand on their knee and a silent prayer from you. This is choosing love and it is always the answer.
By: Scarlett Lewis, Jesse Lewis Choose Love Foundation
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Modern hospice care began in the 1960’s as a response to the over-medicalization of dying in the West. From its inception, the needs of the family were a key component. The patient and family are the unit of care, not the patient alone as is commonly the case in health care.
As such a core component of the hospice palliative care model is that care extends beyond the death of the patient into the bereavement period.
Families experience a period of mourning leading up to and following the patient’s death. The length of bereavement and a family’s need for bereavement support will vary based on many factors but is a universal part of the human experience. As such bereavement support is considered a fundamental part of hospice and palliative care.
A requirement to provide bereavement support and counseling has been included in every set of standards for hospice since the beginning of the hospice movement.
In 2013 almost 2.6 million Americans died. 46% of these families received hospice care and bereavement follow up leaving the majority of families without this support.
There are important reasons to provide bereavement support to families following a death, depending on need. Evidence supports the fact that surviving spouses are at risk for premature death or illness. Although there remains debate over which subgroups are most vulnerable, it is now well established that the health of bereaved individuals is at risk. Bereaved individuals suffer elevated risks for depression, anxiety, and other psychiatric disorders, somatic complaints, infections, and a variety of other illnesses. They have higher rates of hospitalization, medication use, medical consultations, and more days of disability. Risk of mortality is higher due to many causes including particularly suicide.
While age and health are inversely related in bereavement the opposite is often seen. Younger age groups tend to suffer more health consequences due to bereavement. Mortality statistics show excess mortality among the widowed compared to married in younger more than older age groups in both cross-sectional and longitudinal studies.
A number of biological influences may be involved that impact the health of the bereaved. There is a wealth of evidence that immune, neuroendocrine, and sleep profiles are altered in association with loss.
Bereavement support helps mitigate these health and psychological impacts particularly for those whose reaction to loss is profound and for those who seek support.
Grief is a normal response to loss and most people will get through it without major impacts on social, educational, or occupational functioning with information on what is normal and a modicum of support. However, those with prolonged or complicated grief need to be recognized and given more assistance. Bereavement support provided through hospice and palliative care programs is an important resource for society and for those suffering from loss.
Hospice and palliative care bereavement programs are an invaluable resource for addressing the needs of those suffering from loss, and reflect an enduring commitment to the common good and the health of our society.
By: Stephen R. Connor
PhD. Executive Director, World Palliative Care Alliance