Friday, August 07, 2009

Prolonged Grief Disorder (PGD)

Recent research has psychometrically validated the criteria for Prolonged Grief Disorder (PGD) - a disabling intense state of grief that persists for months, sometimes years. Though not a recognized mental disorder in the DSM-IVTR and ICD-10, inclusion could become a reality with the upcoming DSM V and ICD-11.

I have worked with a few individuals whose significant bereavement would fall into this category. Unable to move forward, paralyzed by the loss and grieving deeply, these individuals were often chastised by family and friends for "not getting on with it already." Often, friends and family don't realize that such statements are hurtful.

The inclusion of PGD as a recognized disorder would bring credibility to this specific grieving process. With it, too, would come ways to deal with the disorder. Dr. David Kessler, Grief and Loss Specialist for offers the best and the worst things to say to someone in this grief state :

The Worst Things to Say:

* At least she lived a long life, many people die young.
* He is in a better place.
* She brought this on herself.
* There is a reason for everything.
*Aren’t you over him yet? He has been dead for a while now.

The Best Things to Say:

* I am so sorry for your loss.
* I wish I had the right words, just know I care.
* I don’t know how you feel, but I am here If can help in anyway.
* You and your loved one will be in my thoughts.
* My favorite memory of _________ is _________

Prigerson, H., Horowitz, M., Jacobs, S., Parkes, C., Aslan, M., Goodkin, K., Raphael, B., Marwit, S., Wortman, C., Neimeyer, R., Bonanno, G., Block, S., Kissane, D., Boelen, P., Maercker, A., Litz, B., Johnson, J., First, M., & Maciejewski, P. (2009). Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11 PLoS Medicine, 6 (8) DOI: 10.1371/journal.pmed.1000121


Kahless said...

Grief sucks.

Kendall said...

I'm a terrible person, but I'm sharing this post with all my friends because of the "Worst things to say" section. It's hilarious ...

Barbara(aka Layla) said...

Extremely helpful info, thanks! I have heard people (well meaning) say the most hurtful things to a grieving person. It good to give concrete examples.

Dr. Deb said...

Yeah, it's the worst of the worst.

If you can use it as a teachable moment, I won't pass judgement!

Truth be told, I've said the "he's in a better place" several times in my lifetime. Being older and wiser, I know better now.

Ellen said...

This info is invaluable. I have certainly witnessed people in my own life going through this disorder and having to deal with so much misunderstanding.


Sid said...

Last time I was in the hospital my pdoc made a comment about how I had to learn to grieve. I still haven't figured out what he was referring to since I've only ever lost two people I care about and I did grieve for them.

Could a person have prolonged grief over other losses besides the death of a loved one?

CrackerLilo said...

I know now that my father's death when I was a girl altered me in all kinds of ways. But nobody around me knew how to take it. At least I know very well what not to say, and tend to sound more like the "best" than the "worst" when someone close to me is grieving.

Since several people I love--most importantly to me, my wife and brother--are atheists, the "better place" thing dropped quite naturally from my vocabulary.

Anonymous said...

If PGD makes it into the DSM, then I imagine researchers will start looking for the genetic cause and the drugs companies will be happy to have one more diagnosis with which to keep themselves in business.

Linda said...

Thank you for disseminating those examples, Dr. Deb. I’ve seen folks (yes, usually young and inexperienced) go out of their way to avoid someone who is grieving, and “I don’t know what to say to him/her” is usually the justification nervously given.

People should also remember that pets, although “just” animals, are very dear companions and family members to the individual who’s had one die. It’s shocking to hear someone mock someone else’s sadness as being “silly”.

And Sid, I’d say the answer to your question is yes. I’ve lost two jobs that I really, really loved -- and in the latter case, because of my age, it was literally my last opportunity to earn a pension. In each case, I mourned for a couple of years, and most people assumed I was just lazy about going back to work.

Anonymous said...
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Anonymous said...

Hi Deb. I'm here under my 'in hiding' name tonight. I just want to thank you so much for posting this. Grief is such a powerful thing and while I'm not in the deep, fog inducing, grieving stage anymore, periodically, it hits with a force that is astounding.

You have been such an encouragement to me over the years. This place is a 'godsend'. I don't know if I'll ever be able to go back to my ordinary user name so I apologize for this odd entry. Stalkers suck.

Wanda's Wings said...

Good post. Know what to say is hard.

Marj aka Thriver said...

Good "best" and "worst" list. I'm grieving right now, but it's over old stuff that was previously repressed.

~Just me again~ said...

Good post. I know when I lost a baby at almost 5 months pregnant. It amazed me what people said. But I dont think it matters. I think a person is allowed to be angry and grieve in their own way. It doesnt matter what people say good or bad, the person doesn't want to hear it. Well I didn't anyway.

jumpinginpuddles said...

we reckon we got this also, cause we sposed ta ave got ova cordin ta therapists but we aint so we seen as a waste a space

jumpinginpuddles said...

and this is to "just me again"
losion a baby i reckon is the most heart wrenchin painful grief known ta human kind an i reckon it takes three times a long ta get ova it.

Anonymous said...

Very helpful. I wasn't aware of prolonged grief disorder even though I have seen it manifested in people I've known. Good stuff, especially the things to say, or not say.

Carie said...

My best friend was killed while we were in high school, it was a horrible death...I have not moved past it, I have tried so hard, I have been to a few doctors for it...its strange to me in my own mind that the loss of my family members has hurt, but I was able to get past it, but I have never been able to move on from Laurie

Xmichra said...

After losing my grandfather (who was more like my dad) at 21, I learned the hard way about prolonged grief. It took me years to be able to say his name without crying.

a few years after that one of my best friends father passed away. As I sat with him at the end of the funeral, I was shocked at some of the things people would say... for from that five among the worst

Dr. Deb said...

There is SO much pressure placed on those who grieve. This might help ease what is already so difficult.

The disorder is still new and not solidly formed with details, but I would say YES to your question. Loss does not have to be the death of living person/pet. Loss of any tangible or intangible thing could be a devasting process to move through.

I can relate to everythingn you said.

I like to think that such information will help many just by merely knowing that what they are experiecning has a name and is recognized as real. No money or capitalistic gains there. But, I do see your side as well.

Great advice. Some of my most painful losses have involved my pets.

So good to see you here. I know it is hard to visit in a more visible way. Grief packs a wallop, for sure.

Wanda's Wings,
Sometimes I can't find words. But my eyes and my touch convey my feelings. That can be good too.

I've said the "in a better place" phrase back when I was younger. Good intentions, bad effect.

~Just me again,
That's true. Sometimes nothing anyone says can help you feel any better.

Yes, some things take a long time to get over or move through. There shouldn't be a time limit, I think.

PGD is being considered in the new DSM as a new disorder. Makes sense to have it in there.

Oh how sad. Your mortality might have been touched moreso by the death of your classmate than by family members. We tend to react more deeply to those who are our age, etc. I have a similar experience losing a high school friend to suicide. It haunts me still and is hard to get over.

Love and loss are such powerful emotions. And as you've described, not everyone knows how to deal with the sensitive topic well.

Thanks to all for sharing your stories.

dennis said...

You really got me on the best and worst things to say. I just realized that more than half of the time I'm saying the wrong things.

Wendy C. said...

The process took me just about four years...

Marie said...

Being a SA survivor I hear thoes hurtful statements ALL the time. Frankly, I get sick of it sometimes!

I hear them more since I have taken my story public. I guess people still lack education and awareness!

Anonymous said...

Another bad comment is..."Everything Happens for a reasaon" I lost count on how many times someone said that to me. It has been 9 years since my husbands death and I still cannot figure out the reason on losing someone you love. I am still grieving over the loss and at least I know I am not crazy and that there are other people in the world that must feel the same if they have a name for it..PGD

Robin said...

I'd like to know if PGD also applies to people who've lost someone they love through something other than death. I've always taken break-ups hard, and hoped as I got older I'd get better at it. And I seemed to, generally. But I recently lost a relationship with someone I regarded as the "love of my life" (sorry for the cliché) and I've been completely disabled for over three months. I feel utterly silly at my age (well into middle age) to be moping around like this, but I can't concentrate, can't do anything, can't eat, can't sleep. I'm unemployed and can't get off my backside and find work. It's not because I don't know any better; I just can't.

Classic depression, I know. Is there any medication for the obsessive thoughts, the rumination, bargaining, talking out loud, etc.? Just something that could temporarily lend me the strength to get some sleep, leave this relationship behind, and move on. I don't think I'd need it for long; it's like a compulsive habit I can't seem to break.


Dr. Deb said...

Yes, Robin, I believe it covers all kinds of loss.

Anonymous said...

I lost my beloved husband in on 9/11/99, 2 years before that "other" 9/11 tragedy. I just passed the 10 yr milestone, thinking it would be less crushing. It's not. Still hate waking up every morning. I feel like I'm totally hollow now. Only reason I'm still here -- my 3 sons. Ironically, I was waiting to deliver our last child before ending my own life. Instead, he ended his first and beat me to it.

Thom said...

What is the best intervention when medication and counseling has failed to lessen this depression after seven years. My brother is still in the valley of your graph! I've recommended ECT, wondering what you would do?

therapydoc said...

Thanks, Deb.

Eric said...

Thank you doctor. I've suffered from PGD for years and am finally getting some help.