A new project, Engage with Grace: The One Slide Project was launched in 2008 in the hopes of getting people talking about end of life care. They are hosting a blog rally over the Thanksgiving weekend to get the word out about talking about the difficult questions on End of Life Care.

My Experiences with End of Life Issues

When in practice I helped many families initiate the discussion about end of life care. I also had to help within my own family when my sister’s father-in-law was determined to be terminal.  As with Za’s story, the physicians in Bob’s case felt he needed to stay in the hospital to die. The family had other ideas. I documented the story in “Caring For The Person, Not Just The Patient In End-of-Life Care.”

By educating the family about hospice care, they had a choice. With information about hospice and what they might expect they felt empowered to go against the wishes of the medical team and take Bob home.

Bob went home, not to die, but to live until the time came. The end came “On his own Terms,” two days after leaving the hospital. This country boy was home, living in his own bed with his family, not dying in a big-city hospital.

As with Za’s case, the family, my sister’s family also pushed to get their loved one home, to die on his own terms.

Engage with Grace

Engage with Grace co-founders created a single slide with 5 questions “designed to help get us talking with each other, with our loved ones, about our preferences.”

Furthermore they are asking people to share this One Slide — wherever and whenever they can in blogs, in presentations and in conversations.

To learn more about what you can do visit the Engage with Grace website. You can also read the related post Engage with Grace Project – Thanksgiving Blog Rally 0n the Grief, Loss & Transitions Blog.

More:

Dyer KA. 2009. Put Your Advanced Directives in Writing as a Gift to Your Family. Grief, Loss & Bereavement Edublog.

Dyer KA. 2009. No Surprise – New Study Shows Hospice Patients Feel Abandoned by Physicians. Grief, Loss & Bereavement Edublog.

Dyer KA. 1999.Caring For The Person, Not Just The Patient In End-of-Life Care.Presented at Dealing with Death & Dying in Medical Education and Practice. AMSA Convention March 30, 2001. Journey of Hearts.

My mother’s death has brought me to my knees. I had feared it my entire life. I was terrified that when it happened I wouldn’t be able to go on. In fact, I was sure of it. A life without my mother was and is unimaginable to me.

Maria Shriver

I was very pleased to hear that the  Womens Conference 2009 included the a talk on Grief, Healing and Resilience as one of their Lunch Time topics.

California’s recently doubly-bereaved First Lady Maria Shriver moderated the session on Women Dealing with Grief which featured newly bereaved Lisa Niemi (widow of Patrick Swazye) and bereaved parents Elizabeth Edwards and Susan St. James. The losses represented (that we know of) by these women – loss of spouse, loss of teenage child, loss of parent, loss of uncle(s) and losses from cancer.

In this moving round-table chat the four women shared their stories of grief, of hope and of resilience.

You can watch a five-minute excerpt from the Grief, Healing and Resilience forum from ABC News on YouTube or the entire lunch session (which included the Grief, Healing and Resilience panel) at the Womens Conference website. The Grief sessions starts at 1:21:40 with an introduction by Katie Couric and moving words by Maria Shriver who informed the audience that “Every minute of every day I feel my broken heart.”

At one point, Elizabeth Edwards shared her thoughts on Grief and perhaps the most famous role model of grief, former first lady, Jacqueline Kennedy:

Jackie O did just what our nation needed her to do. She stood there and said she is going to be strong, and we are going to get through this, but it set an impossible standard. In truth what you feel like doing is wailing — completely guttural, completely raw, completely full of pain, and we don’t allow ourselves that.

A special thank you to these very brave and courageous women who took on a topic that most people don’t want to hear about – grief. I hope that the openness shared by these women in discussing the very painful topic will help other people to begin talking about their own grief.

This tweet got me thinking whether grief could be an excuse for poor behavior, or perhaps grief is being exploited as a more sympathetic response and an attempt to boost ratings.

Grieving a Loss Leading to an Anniversary Response
West’s behavior could have been explained if he was experiencing some kind of Anniversary Response or “a sudden unexpected rush of memories, intense emotions and feelings of grief.” Sometimes people will act out when they are grieving a loss.

The most likely dates for an anniversary response would be the day his mother died or her birthday, neither of which coincided with the Music Awards in September.

His mother Dr. Donda West died in November 2007 after routine cosmetic surgery. A celebration was held July 12th of this year on what would have been her 60th birthday.

Neither of these major likely dates would account for the poor behavior demonstrated at the award ceremony. West had been seen drinking before the show, which could have contributed to his outburst.

Is Jay Leno Taking a Turn at Being Dr. Phil?

Jay Leno has a new show and perhaps trying to take on a new style. West had been booked to appear before the MTV Award issue. Leno thanked West for honoring his commitment to the interview and then asked West how his day had been. West responded that it had been

“extremely difficult to deal with the fact that I hurt someone and took something away from a talented artist. It was rude.”

Some have raised the question that I wondered when Jay Leno evoked the memory of West’s deceased mother by asking, “Would she be disappointed in this? Would she give you a lecture?”

Initially West appeared rattled and had some difficulty coming up with a response to question. Then he responded:

I deal with hurt and celebrities don’t take the time off…

I am ashamed that my hurt caused someone else’s hurt.

Some reporters have speculated that the question asked by Leno was a set-up for a more believable excuse that West could use. Gawker.com’s Brian Moylan told PopEater, “Jay’s mom bait gave Kanye the perfect way to look sympathetic, and lead right into ‘I’m still sad cause my mom died’ defense.”

Why is it that the old Don Henley song play keeps in my head? This time instead of the bubble headed bleach blonde, we have a wise-cracking, graying comedian…

Kick em when they’re up
Kick em when they’re down

Don Henley
Dirty Laundry

While Leno did thanking West for honoring his commitment to the interview (scheduled before the MTV event), ultimately he went on to exploit someone who may still be grieving a death for a boost in ratings.

One has to wonder, as does the Free Press, if “We’ve all been punked?” I hope so.

I don’t think that a ratings boost is any reason to exploit someone who might be still grieving a loss and I don’t think it is right to exploit the grief response for poor behavior.

Resources:

Piazza J. September 2009. Did Jay Leno ‘Exploit’ Kanye’s Dead Mom? Popeater.com

Smith M. September 2009. The Kanye-Swift moment: Have we all been punked? Free Press.

Muhammad C. July 2009. Kanye West’s Mom, Donda West, Remembered on Her 60th Birthday. BET.com

Image: Natalie Maynor.  Grief. Creative Commons License.

Yet there was the other September 11, 2001, the normal day, a day like any other in which people were born and they died.

The tragic events of September 11th or 9/11 overshadowed other events of the day from the celebrations of life to mourning more quiet and less public deaths. The memory of September 11th as a National Day of mourning for those lost has also overshadowed the other ways, happy and sorrowful, that people want to remember September 11, 2001.

Recently we experienced June 25, 2009. This was another day when people asked “Where were you when…” . This was the day that Farrah Fawcett died first, followed by the unexpected death of Michael Jackson. While June 25, 2009 may be remembered most as the day that Michael Jackson died, hundreds and thousands of other people also died on the same day and thousands were born on that day as well.

Disenfranchised Joy and Disenfranchised Grief

It is possible that those who celebrated births, deaths and other life events on September 11, 2001 could experience what is know as Disenfranchised Grief, or by extension a Disenfranchised or Unacknowledged Joy. Disenfranchised Grief is a loss or grief that is not acknowledged by society.

For those who had happy experiences occur to them on September 11, 2001, because of the National Tragedy, it may be difficult for people to celebrate births and other happy events.

For those who also lost loved ones on September 11, 2001, they may have difficulty coping or acknowledging their personal, private loss because compared to the tragic September 11th events, their loss may not be recognized or regarded as being important or worthy of grieving. Not being able to publicly mourn a loss, not having that loss acknowledged can make it more difficult for those experiencing the loss to reconcile their grief.

Validating Our Joys and Griefs

When people experience a joyous occasion or a major loss, most want to share the experience good or bad with others. Telling someone and sharing the experience validates the event, makes it more real. In the case of grieving a death, accepting the reality of the death can be very important in the healing process.

With a Disenfranchised Joy or Grief, the experience is not acknowledged or validated. In the case of September 11th those feeling the joy or grief for events unrelated to the 9/11 Tragedy may not perceive their experiences as legitimate ones in the eyes of the rest of the world. Yet, we must remember  as with all other losses, that the most important loss to you is your own.

Ways to Cope with Unacknowledged or Disenfranchised Events

One of the first ways to cope with an unacknowledged or disenfranchised event is to realize that you are experiencing something that other people may not regard as a legitimate reason to celebrate or grief. Knowing this may make it easier for you to cope with your event going unacknowledged by others.

Another way to cope is to find a trusted friend or a support group in whom you can confide your feelings.

Finally, find ways to celebrate the event or mourn the loss that mean something to you. In the case of a celebration, like a birthday party you may want to check with family and friends to find out if they will celebrate with you on September 11th. If not,  plan a smaller celebration for the day and a larger one on another date.

In the case of a death it might be lighting a special candle, visiting the grave site or  spending time in a place that was special for you.

Taking Back September 11, 2001

In 2002 the non-profit My Good Deed was founded to reclaim September 11th and establish the day as a national day of service where people would do something good—perform a good deed, volunteer or engage in another charitable activity.

In 2009, September 11 was finally established as a National Day of Service, to honor the victims and those who rose to service in response to the attacks on America.

Establishing September 11 as a National Day of Service may go far in reclaiming September 11 as a day when people can celebrate happy events and mourn other sorrowful events that also occurred on that day.

Resources:
Greenop E. Unacknowledged Grief and Loss. Grief Support.
Dyer KA. 2008. What is an Anniversary Response or Anniversary Reaction? Grief, Loss & Transitions Blog.
Dyer KA. 2007. Anniversary Reaction – When Remembering Isn’t Always a Happy Occasion. Squidoo.com

Image:  Karolina Saganiak. Carnation at Auschwitz-Birkenau. Royalty Free Use.

I was really moved by what the President said he had written to one of the widows from 9/11. He so eloquently summed up coping with loss and healing from the grief:

As you know so well, the passage of time never really heals the tragic memory of such a great loss, but we carry on, because we have to, because our loved one would want us to, and because there is still light to guide us in the world from the love they gave us.

Remembering Ted Kennedy
Soon after Ted Kennedy’s funeral his niece, Maria Shriver sat down with David Gregory to talk about the loss of a favorite uncle, just weeks after losing her mother, Eunice Kennedy Shriver.

She echoed the reasons for his compassion—it was a compassion that grew out of knowing pain and loss.

He was the most compassionate, empathetic man. And I think he was that way because he himself was wounded and he himself knew pain, he himself knew struggle, he knew abandonment. He knew all of the things that pain a human being. And so when he saw other human beings in pain, or where their character was questioned or where they had loss, he was always the first person to reach out. And nobody does that who hasn’t felt that way themselves.

Visit msnbc.com for Breaking News, World News, and News about the Economy

A Lifetime of Losses
* In his eulogy for Ted Kennedy, President Obama listed out just a few of the losses experience by Senator Kennedy during his lifetime:

He lost two siblings by the age of sixteen. He saw two more taken violently from a country that loved them. He said goodbye to his beloved sister, Eunice, in the final days of his life. He narrowly survived a plane crash, watched two children struggle with cancer, buried three nephews, and experienced personal failings and setbacks in the most public way possible.

Senator Kennedy experienced more than a lifetime of losses, learned from them and went on to help others. His compassionate heart will be missed.

As noted on Gigantic Digital by Mark Lipsky:

Ms. Steinman invites the audience on an intimate, moving and ultimately heartwarming journey whose central theme – the loss of a child – is often taboo. With “Motherland” that delicate subject is presented with enormous grace and leaves us with both a deep understanding of the issue as well as profound respect for the women that we meet along the way.

Debuts August 26 Online

This film debuts online August 26 online on Gigantic Digital. You can watch Motherland the film for the affordable price of $2.99 for a three day pass.

A Resource for Bereavement Educators

Motherland the Film will be an excellent learning resource for educators teaching grief, loss and bereavement courses. I plan on using it in my own course in the Winter. The film addresses the powerful grief experienced following the loss of a child. It also speaks of the benefits of grieving in a community and to the healing power of volunteerism.

You can read more about the film on their website or at the post in the Grief, Loss & Transitions Blog: Motherland the Film – A Tribute to Those Coping with Grief

Ryan O’Neal talks about how he has been coping with the loss of Farrah by taking on the task of answering all of mail—the condolence letters and by writing in a journal to Farrah.

This interview show how even though a death is anticipated and the family goes through anticipatory grief prior to the death, the reality of the death, the finality of the death is still difficult and there is new grief for those left behind.

Wayne Perry, CEO of GSC Products reports that he has received numerous requests for pre-release versions of Pocket Cemetery from Michael Jackson fans who want to create their own memorials to remember the King of Pop.

A Good Way to Grieve or Exploiting the Grieving?

Many of the early reviews of Pocket Cemetery are coming from technology people. They are weighing in on the side that this app is just another way to exploit those who are grieving.

Personally, coming from the perspective of a Grief and Loss expert, I think that anything that helps a grieving person to cope with a death in a healthy way is a good resource to recommend. The Pocket Cemetery app is an interesting way of applying technology to help someone cope with the loss of a loved one.

This iPhone app is also a good way to help someone to be able to do something, to create a memorial and give flowers for the many who are unable to be there in person to cope with a celebrity death.

Share Your thoughts on Pocket Cemetery

Join the debate whether Pocket Cemetery is a new way to grieve or another way to prey on the grieving. Tweet your thoughts on Twitter with the hashcode #iGrief or on the Pocket Cemetery page.

More:

Dyer K. 2009. Pocket Cemetery: A Way to Carry Departed Loved Ones in a Pocket. Squidoo.com

Press Release. 2009. New iPhone App Memorializes Dead Loved Ones In The Palm Of Your Hand. PRWeb.

Over the course of a few hours the tweets went from people wishing her well and hoping she would have a chance to marry her long-time companion Ryan O’Neal to news of her death at 9:28 AM.

I head the news first on Twitter, within 20 minutes of her passing. I tweeted at 9:58 AM:

dr_kdyer: Amazed by the speed of Twitter. Found out about Farrah’s death before Google News posts an update. Also the outpouring of sympathies.

News was on Twitter before I saw it on Google News. It was an hour after her death before the news reached a top spot on Google News.

RIP Farrah Fawcett became one of the top trends on TweetStats within 4 hours of her death.

People were already coping with the loss of American icon Farrah Fawcett. Then more news came…Michael Jackson was not doing well… he had suffered a cardiac arrest. Soon after that he had died. Time of death for Michael Jackson was 2:26. I tweeted a report from the LA Times at 3:32 PM that he had died.

In one day we not only lost Farrah Fawcett, but also Michael Jackson. One was a more anticipated death, the other a sudden unexpected death. These two deaths followed Ed McMahon’s slightly more anticipated death earlier in the week. It has been a very difficult couple of days with the passing of three icons of American pop culture from three different generations, one in his 80’s, one in her 60’s and one in his 50’s.

Josh Groban tweeted at 4:03 PM on June 25th

joshgroban: Definitely a “Where were you when…” day.

June 25, 2009 will become one of those days like when JFK was assassinated or 9/11 that people will remember where they were when they heard Michael Jackson had died.

Tweeting Death Announcements, Condolences and Rest in Peace Messages

For me, I think one of the most remarkable outcomes from the new social networking Web 2.0 tools is the ability to connect people instantaneously during times of grief. Twitter went into overload with news of Michael Jackson’s death. Most of the top tweets for the 25th were Rest in Peace or RIP messages for Farrah, for Michael and also for Ed McMahon. (Many people recognizing the superstition that celebrity deaths go in threes).

Within the span of a few hours the Squidoo page that I started writing after hearing news about Farrah Fawcett’s death looking and people tweeting their condolences turned into a page that also explored using Twitter as a way to announce deaths. With applications like Twitter and Facebook, people are able to send and receive messages almost as they were happening.

I am curious to know if how many people use this new type of social media communication as a way of sending messages, so posed the question on the lens and on Twitter “Do you tweet condolences, sympathies or RIP messages on Twitter?”

As noted by Mimi on the Squidoo page, with Twitter

“We have no better way of connecting with the family and friends of well-known folks who have passed on.”

Share Your Thoughts on Tweeting Condolences

You can share your thoughts on twitter with the hashcode #twcondole or on the “Twitter to Announce Deaths, Send Sympathies and Condolences” lens at: http://twttrlist.com/11X1

On Friday May 15, 2009 NBC will be airing the 2 hour documentary Farrah’s Story which is being called her self-written obituary by the Hollywood Reporter. I remember watching “Love Story” many years ago and crying. I have a feeling I’ll be watching Farrah’s Story with tears as well.

In the interview Meredith Vieira points out that “There are plenty of people watching this documentary who are loved ones of somebody fighting cancer watching to see ‘what did he do’? Ryan O’Neal answers:

I drove, basically.
If she wanted comforting I was there. If she needed anything I would get it.
I was part of the team.

My wish for O’Neal is that he not underestimate the power of presence and being with someone who is dying. There is a healing power in human presence in simply being.

Just Be
Be yourself and relate person to person.
Be ready to listen again and again.
Be respectful.
Be aware of feelings and non-verbal cues.
Be present.
Be comfortable with silence.
Be human.
Be genuine.
Most of all–Be there.

© Kirsti A. Dyer, MD, MS

Sharing the End of Life
Walking with a loved one or a patient on their sacred final path is a very extraordinary and intimate experience, as we learn the importance of just being. Dr. Rachel Naomi Remen offers the following description of being and sharing true intimacy.

We experience intimacy not by sharing words, but by sharing the silence.

In the end of life what matters, what makes the difference, is taking the time to slow down, to hold a hand, to give support, to just be and to share the silence.

Sources: Inbar M. May 2009. O’Neal: Fawcett’s had ‘terrible time’ in past year. MSNBC.com
Dyer KA. 2001. Quotations on Being with a Dying Person. From Dealing with Death & Dying in Medical Education and Practice.
Dyer, K. 1998. Healers and Healing. Journey of Hearts