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Giving and Accepting Support During Crises and Bereavement: Discussion on NY Times Article

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Jessica Elder
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Giving and Accepting Support During Crises and Bereavement: Discussion on NY Times Article
Many people noticed an article recently published in The New York Times entitlted "Coping With Crises Close to Someone Else's Heart" by Harriet Brown. In this article, the author spoke of the crises and losses her familiy endured over the last few years and discussed the different levels of support her family received from family and friends. While reading this article, I realized that many of the statements sounded familiar as I have heard bereaved parents, and parents of ill children, speak of the different levels of support they receive. In the article, the author stated, "For the most part, we were blessed with support and love; friends ran errands for us, delivered meals, etc. But a couple of friends disappeared entirely." The author proceeded to discuss the different reactions she observed from others and stated, "Awkwardness is another common reaction-not knowing what to say or do. Some people say nothing; others, in a rush to relieve the feelings of awkwardness, blurt out well-intentioned but thoughtless comments." The author also mentioned people who give what she calls "pseudo-care." Pseudo-care is when people ask vaguely if there's anything they can do to help, but never follow up. The author discussed how if people really want to help, they can offer something specific such as a meal, assistance with laundry, etc.

Please feel free to share your thoughts around this subject and article here on the message board. How do you relate to what the author writes about? How do you feel about this article? You can find a copy of the article by clicking on this link http://nyti.ms/bCpsAw
jtlfund
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I have experienced
jtlfund
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I have experienced isolation while grieving the death of my son, Joseph, who died 13 months ago after a short 4 month battle with an inoperable brain tumor.  Many of my friends have been supportive but some that I have known the longest and some thought I was closer to have turned away.  The parents of some of Joseph's friends (thus friends of mine too) have been cordial but not nearly as friendly as they used to be. I no longer get invited to people's houses or to birthday parties or play dates.  I try my hardest to ease their discomfort when we do see one another with humor and diversions but it has become apparent to me that I represent their worst nightmare.  I find bereavement to be quite isolating and I am disappointed with the immature reaction of adults when it comes to speaking of the death of a child.  I can almost see their shoulders tensing and the hairs on their neck standing up at then mention of my son.  As if I am supposed to forget about him and not speak of my memories of him merely b/c he has passed?  I think not.  Truth be told, I only partly care about their uneasiness...I will never stop talking about my Joseph just to spare others a small moment of discomfort which isn't even necessary.  Perhaps they should consider my feelings and how uncomfortable it may be for me to have to speak of a son who I will never hold or see again?
Donna Beech
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I lost my son Jonathan in 2007, just after his fifteenth birthday, after a four-year battle with a brain tumor.  And, yes, losing one's child is the worst that can possibly happen. But we bereaved parents all seem to experience other losses as well, when we try to 'go back' to our pre-brain-tumor lives, only to find that some friends and relatives have become distant, stand-off-ish, and uncommunicative.  This really hurts, especially since we're just coming out of the worst loss of our lives.

I think that for the past three years I've been trying to 'fix' the problem of people dropping out of my life.  But quite recently I've realized that that's a waste of time and energy..........I'm now realizing that there's a new 'family' out there for me --- comprised of strong, caring, sensitive people that do want to share my journey.  And although they will never be a substitute for my son, I am so grateful for these new people in my life, as they are incredibly wonderful and amazing!

And so my own current goal is to ignore others' insensitivities and to look for people who are not afraid to walk with me.  This is very difficult, but since we've already gotten ourselves through the worst (losing our child), we can do this, too.  I'll always have two children:  David who is in this life with me, and Jonathan who is in the next life and who therefore is with me everywhere I go!  When I'm feeling my strongest, I realize that I have every right to talk about both of my children!

On a more mundane note:  The author's suggestion of giving a list of specific things that you can do (mow the lawn, get groceries, etc.) is a really good one.  On the other hand, however, even though all those necessities must get done, they are mundane.......what we really wanted was our child's good health..... and no one was able to give us that.


nickfs
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My son Danny, my only child, died of a brain tumor in May 2000. He had battled it since April 1998. At one point he was in remission. It came back in Dec. 1999 and he fought it until the very end.
During those times I would give members of my family(my brothers & sisters) weekly updates on him. They would respond with words of encouragement or just say thanks for keeping them informed. From time to time they would contact us just to see how we were. After Danny passed they seemed to not know what to say or do, and that was perfectly ok for me, but still felt that I was abandonded by my own family.

Have come to find out that they just didn't know what to say to us. We had gone through a parent's worst nightmare and since all their children were healthy they felt it was best to not say anything. Even all these years later I do not hear from them with exception of one.

For me personally, I just go on and am thankful for what they did do during those tough times.

Laurie Burke
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For jtlfund: I actually like your response to others.  Although many bereaved people feel they should not have to train people in how to support them through their bereavement or feel they lack the energy to do so, the fact is that that is what is often necessary.  You are right--you represent their worst nightmare, and yet part of what you do when you speak your son's name or encourage them to remember him is to honor him publically.  This, in turn, will likely contribute to your own healing, something which should not be discredited.   At the same time, you are teaching others, in a subtly gentle way, how to be present and helpful to a grieving person, and also ways that they can also honor your son's name and life.
Laurie Burke
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Donna,
In ways that have become characterisitic of my limited understanding of you, you have once again succinctly stated a number of important aspects of your grieving experience.  I admire your postive attitude and courage to set aside those relationships you can't "fix" in exchange for "right" relationships that are worthy of your time and attention.

I love the idea of giving would-be helpers/supporters a list of ways in which they can help, but I also love the idea of supporters just seeing what needs to be done and doing it (even if that simply means  taking the other kids off your hands for an afternoon or slipping you a $50 bill)!

And, yes, yes, yes.....keep talking to both of your children; and, yes, yes, yes.....what you really needed to have provided for you--Jonathan's health--was not a possibility.  Excellent point, well stated.  While verbalizing that does not lessen the pain, recognizing the limitations inherent in social support systems and the parameters within which we must function while on this planet is often one step closer in our healing.
Laurie Burke
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Nick,
As someone who really has been abandoned by those you'd naturally expect to be support by, I admire your forgiving attitude.
I'd also like to say that just because someone doesn't know what to say to a griever does not mean that they cannot be a good supporter.  There are plenty of ways to convey to someone that they are not alone (have not been abandoned) without using words.  In fact, the use of words is often not even the most effective means of support. 
I am sorry that your experience has been what it has, but I'll bet that one thing that's come of it is that you are a much better supporter yourself of others facing major life losses and stressors.

Jessica Elder
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Thank you all for responding. Each one of you made such important points. While talking to bereaved parents I learned that so many feel the way you do. It is difficult to accept that some of your friends, family members and people within your community respond to you so immaturely, or differently than you would have if the situation was in reverse. I am glad this article was published in the NY Times because maybe it will educate at least some people and give them some insight. However, some people may never learn and others may only learn if they would take the time to talk to bereaved parents and truly listen, and be willing to share your journey. 

Donna, I really like what you said about discovering a new "family" out there and finding people who are willing to share your journey. However, this can take time and finding the new family is not always easy. Maybe you could share some of the ways you were able to find your new "family?" I also love how you said that your son Jonathan is everywhere you go-what a beautiful and comforting thought.

Nick-I agree, so many people respond the way they do because they simply have no idea what to say. As others mentioned, they are also afraid and don't want to be reminded of their own fears. It's just a shame that everyone is not on the same page (as those who are good listeners/supporters) when it comes to being there for others and sharing others' difficult journeys.

It seems like you all share similar feelings and realize that not everyone will be there for you in the way you want and need them to be. Hopefully we (meaning anyone who realizes this issue) can think of ways to educate others in the future, and hopefully bereaved parents can find each other, others who understand, and a new and supportive "family."
Donna Beech
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Thanks, Jessica!  In response to your question:

Definitely the most helpful way that I sensed a new "family" was (and is) by going to Camp Sunshine in Maine for their bereavement weekend each Memorial Weekend.  Of course, we were familiar with the Camp because we were there three times with Jonathan for the brain tumor sessions.  But that's not the case for all the families that attend their bereavement sessions.  Too, that first session after Jonathan died was difficult, because I knew no one and missed my brain tumor friends.  But since then it's become a very important part of our lives, and I'd highly recommend it.

Another really helpful thing was setting up our annual memorial concert, raising funds for one organization a year that helped us on our journey.  It's a choral concert (we're classical musicians), and it needs lots of our singer-friends and orchestra-friends in order to work.  It's a big undertaking that requires not only the support of many people, but also lots of focus and energy from me.  It seems to be becoming more established here, as our fourth annual concert will be in March and today's local paper has a nice write-up about our third concert (for Camp Sunshine) which also mentions the upcoming fourth one already (for Children's Hosp. of Phila.).

This online chat group is really helpful, too, and I greatly appreciate this writing outlet.

And meeting up with another bereaved mom here and there for lunch every so often is really helpful.

The Compassionate Friends group isn't as helpful, I discovered, as we parents who lost a child to a long illness are in the vast minority in that group.  A sudden loss is totally different from our experience.

At this stage, over three years later, I'm becoming more and more aware that I'm not alone, and that there are many of us out there.

Hope this helps!
jtlfund
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Thank you, Donna.  

I had no idea about the bereavement weekend at Camp Sunshine and I am eager to look into it.  I too have tried The Compassionate Friends and while I am appreciative of their work I agree that the group is vast with many people have experiencing a sudden loss.  WIth that said, I have attended two of their support groups only b/c I don't know where else to go.  I am thankful to have learned about Camp Sunshine.

Our son was 2 1/2 when he died 7/7/09 only 4 short months after his diagnosis despite treatment.  He was a funny, mature, talkative and wise little man.  I am still fairly early on in my journey with Grief and am finding that in this second year anger and bitterness rather than hurt about the isolation as a result of his death is playing a larger role.  That is not the person that I previously was nor is it the person that I want to become but the injustice of his death and its aftermath is enraging sometimes.  it would be great to find others who could relate to that firsthand.

Jessica and Laurie, thank you for your responses and thank you, Donna, for your guidance. Lastly, Donna, if you wish,  please contact me privately b/c I know of a special and promising project going on at C.H.O.P. to advance the study of brain tumors.  You may in interested in directing your funds there?  Just a thought.  Thanks again.


John Ott
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Hi everyone:   My daughter Nikki died after an 8 month battle with a BSG in March of 2001.  My Nik liked to walk around the house with the word NORMAL stuck to her forehead when our home became, as she put it, obsessed with her brain tumor.   She wanted things to be as normal as possible, given the circumstances.   

During and after Nikki’s journey, I realized that people wanted to help but also wanted to continue with their normal life.  I found myself wanting to be around other parents who were traveling down the same road.  I was engrossed in everything brain tumor, while my friends and family could only take a little at a time.   

Nikki is still strong in my life but I have taken her forehead sign to heart and strive to get back to normal.    I still have my brain tumor friends along with friends and family from before.    

John      

Laurie Burke
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John,

Nikki is a special girl!

I love hearing about the ways you've learned to cope, though, both with your social world and with your own need to form a life without her.  This statement is priceless: "I have taken her forehead sign to heart and strive to get back to normal." 

What a cool way to maintain a continuing bond with her by using her own mantra for her life to find a way to go forward with your own. 

Best,
~Laurie

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