New Book On Grief: Author Seeks Input

[MartyT]

Dear Ones ~ The following invitation comes to us from Stan Goldberg, cancer survivor, hospice volunteer and author of several books including Lessons for the Living: Stories of Forgiveness, Gratitude, and Courage at the End of Life -- a book I've read myself and highly recommend. (Learn more about the author on his Web site: Stan Goldberg, PhD, Leaning into Sharp Points: How to Deal with Life and Death

My name is Stan Goldberg and I write on end-of-life issues and grief. I am beginning my next book and I'm requesting input from grief support groups on the book's premise and the topics I have chosen to include. THE PREMISE. Despite the love people feel for the person who is dying, they struggle during those final months, weeks, or days unsure of what to say or do. No one has taught them about the nuts and bolts of dying. No classes are offered on how to care for their loved one's emotional, spiritual, and psychological needs. And few books offer specifics. Not knowing how to deal with the approaching death of a loved one makes the grief they experience even more painful and difficult to overcome.

My intention is to write a book that will be distributed to the general public covering 25 behaviors that I saw--as a hospice volunteer for eight years and a communications counselor for 30--that resulted in easier deaths for my patients, and reduced grieving for their families. I am still a hospice volunteer and counselor.

Although information on helping loved ones die was in my last book, LESSONS FOR THE LIVING: STORIES OF FORGIVENESS, GRATITUDE, AND COURAGE AT THE END OF LIFE, because of space limitations, it was covered in less than seven pages in the appendix. My first question is do you believe that a book of this type might be beneficial to people who are about to lose a loved one?

THE TOPICS. In serving more than 300 people over the past eight years I've found 25 behaviors that made death easier and reduced the grief experienced by loved ones during the dying process and afterwards. My second question is are there any suggestions you would add to the following list of 25?

1. Be kind to yourself

2. Sit when talking

3. Reduce noise

4. Balance help with allowing independence

5. Create a calm environment

6. Don't argue

7. Celebrate life

8. Don't expect interests to remain the same

9. Don't talk about the person as if he or she wasn't present

10. Listen more, talk less

11. Don't rely just on words to convey your feelings

12. Express compassion in little ways

13. Discuss dying if your loved one wants to

14. Why there is a need to complete unfinished business

15. How to say goodbye

16. Why you should forgive

17. Asking for forgiveness

18. Don't grieve excessively in their presence

19. Don't force food or drink

20. Give legitimacy to private experiences

21. Give permission to die

22. What to do as death is imminent

23. What to do for yourself after the moment of death

24. How to create a healing ritual

25. How to understand your grief

Each of the above suggestions will be given an entire chapter, with the how of doing them clearly delineated and exemplified by my hospice and counseling experiences. I understand how complicated grief is. I hope to set the stage for making it less painful for those who lose a loved one. I appreciate all input. Thanks in advance for your help.

Take Care,

Stan Goldberg, Ph.D.

stan@stangoldbergwriter.com

[Ron B.]

Hi Stan. I'll be very direct in responding to your ideas about coping with death.

About the 'premise' of your upcoming book, you write:

"Despite the love people feel for the person who is dying, they struggle during those final months, weeks, or days unsure of what to say or do."

Well, to be honest about it, that doesn't match with my experience. I had an unusually strong conviction that I was doing the right things all through my mother's illness and passing. I was one of her caregivers, and I have never been devoted to any task so completely in all my life. I know I did the right things. Which isn't to shoot down your premise, it's only to say that some people like me negotiate the dying days of a family member very well. It's dealing with the grief afterwards that has caused me so much trouble.

You write:

"No one has taught them about the nuts and bolts of dying."

Can death and dying really be broken down into to a "nuts and bolts" type of experience? Perhaps the metaphor is just awkward, because otherwise I like your idea that we can learn and acquire skills in coping with death and subsequent grief.

You write:

"Do you believe that a book of this type might be beneficial to people who are about to lose a loved one?"

Yes, I think you have a good topic that could possibly act as a set of general guidelines to assist people coping with a dying family member. The only hesitation I have in endorsing your project is about the generally poor quality of self-help literature. No doubt you have pawed through shelves of self-help literature, as have I. Many of these self-help books are written by non-professionals, whose expertise is broadly open to question. So long as your book gives real detail of your own experience working with the dying in hospices and with their families, then it acquires an authenticity that can be compelling. On the other hand, the quality of self-help literature can deteriorate quickly when issues are oversimplified and when one-size-fits-all solutions are offered. I'm hoping your book completely avoids this predigested pabulum of pop-psychology.

I do like the selected list of topics you plan to cover in your book. In reading through the list, I see most chapters cover the period when the dying are still alive. However, it's in the months after my mother died when my grief hit hardest; that's where I need help. For example, dealing with my siblings in dividing up my mother's estate has been a wrenching experience. Oh well, the scope of your book perfectly matches with your experience in hospice, and I can't expect you to offer instant solutions to my own lengthy ordeal with grief. Good luck with the writing; keep it real.

Ron B.

[Stan Goldberg]

Hi Ron,

Thank you for replying so quickly and for your insightful thoughts. Unfortunately in my experience, people like you who know instinctively what to do with and say to a loved one who is dying are in the minority. The latest figures I saw are that 1/2 of the people who die, die in their homes. Of those, 30% have hospice care. The average stay for one hospice here on the West Coast was three weeks. I am sure that any family who has the service of a hospice, whether in home or in a facility has access to the same information on my list. My concern is with the majority of people who still don't know about hospice and those who only invite them into their lives for a very short time.

"Nuts and bolts of dying" is definitely an awkward metaphor. Thanks to your input, it's gone.

I agree with your opinion on the quality of self-help books. Most are written with a formula in kind by someone who is pushing a personal ideology, often having no factual or scientific basis. While Lessons for the Living was anything but a self-help book, the Sacramento Review called it a "self-help" book that delivered. In my publishing experience, the final content of books often have no reflection on the good intents of the author. If reviewers feel more comfortable calling Lessons and the book I'm working on now "self-help", that's fine. But what I do is observe what works and what doesn't, what helps and what hurts, what's useful and unskillful. I show the effects in real life situations (with identities hidden), then I relate the lesson to how it effected my life and others. That's what I intend to do with Helping a Loved One Die.

I'm not sure those of you who are grieving will find this book that helpful. It really is intended for those who either will or are just beginning the journey. Your community is an invaluable resource not only for the book, but also for anyone who will lose a loved one they will grieve.

I am very well aware that just as dying is "messy" so is grieving and there can be no "one-size-fits-all" approach for either. I look at my articles and books as if each had a quirky GPS navigator attached to it: it will give you the general direction, but not necessarily to streets to take.

Although I do understand how difficult grieving is and the paucity of good quirky GPS navigators out there, the topic is beyond the scope of what I want to accomplish--at least in this book. Thanks again for you input. You've made a difference.

Take Care

Stan

[MartyT]

Ron and Stan, I appreciate the comments you've shared with each other (and with the rest of us).

As you say, Stan, the input you received from Ron already has made a difference in how you're approaching your project. I'd like to add that, when I decided to post your request for "input from grief support groups on the book's premise and the topics I have chosen to include," it was with the intention of exposing you to the group of articulate, intelligent and compassionate people who make up our membership here ~ all of whom have already experienced the dying and death of their loved ones, and who are in a unique position to offer you the sort of feedback you are seeking. So I still would encourage any of our members (who are willing to do so) to go ahead and share their comments with you, either by posting them here or by contacting you privately via e-mail, at stan@stangoldbergwriter.com

(For those of you unfamiliar with Stan Goldberg's wonderful work and writing, I encourage you to visit his Web site, Stan Goldberg, PhD, Leaning into Sharp Points: How to Deal with Life and Death and read his beautiful book, Lessons for the Living: Stories of Forgiveness, Gratitude, and Courage at the End of Life. You'll also find more about Stan, and a list of his thought-provoking articles, on the Open to Hope Web site, here: Stan Goldberg Once you're on the Open to Hope page, be sure to scroll down far enough until you see About Stan Goldberg.)

[teny]

Hellow Im teny from Athens GReece.Iv send An email Did you reeive it? about is it wrong not to let your loved one know that he is terminal and with no hope ill. thank you Teny

[Stan Goldberg]

Hi Teny,

I've been asked this question often and my answer is always the same--There is no right or wrong answer. It all depends upon the person's needs and culture. When I was in Taiwan, I learned that dying was never discussed and people who were dying where rarely told their disease was terminal. It was a cultural value that was respected by everyone. In a country like Tibet, death has always been a part of living and people had no problem accepting a terminal diagnosis. Since the Middle Ages western society has done it's best to pretend death doesn't happen to anyone we know.

There is an argument that is often made that by not being told a person is dying, he or she will do better (live longer) and not have the fear many associate with death. And I'm sure that's appropriate for some people. My concern, based on my experiences, is that the facade of renewed health eventually breaks apart. At some point, nobody has to tell a dying person he or she is dying--their body lets them know. And it is at moment of knowing "I'm dying," that my concern lies. My brother-in-law denied he was dying for 14 months, despite being bed-ridden for most of that time. When he finally admitted that he didn't have long to live, he didn't have time to make amends for certain things he hadn't done in his life. If he had accepted that he was dying, would he have had enough time to find closure? I'm not sure. But my experience leads me to believing that the more time one has to finish up the business of living, the easier death will be.

Now this doesn't mean that you force the realization or the discussion on someone who isn't ready to hear it, either because of personal reasons or cultural values. I've found that when someone is ready to deal with their death, they have no problem discussing it. It's important though that they initiate the conversation.

I hope this helps,

Stan

[teny]

tHANK YOU SO MUCH FOR YOUR ANSWER.i HAVE SO MANY TO ASK BUT IT IS DIFICULT TO EXPRESS MY FEELINGS BECAUSE i CAN NOT MAKE MYSELF UNDESTUD IN ENGLISH.i HANE RED SOME OF YOUR POSTS IN OPEN TO HOPE TRYING ALWAYS TO FIND HOPE.iT HAS BEEN 44 MONTHS SINCE i LOST MY HUSBAND AND IT HURTS ALWAYS. THANK YOU FROM FAR AWAY .TENY

[Stan Goldberg]

Hi Teny,

Thank you for your kind words. I know how difficult it can be to work through grief. In the past, I've found that often the door to recovering from grief is identifying the emotions your loved one created in you and then searching for ways (not necessarily people) that can create the same emotions.

Take care,

Stan

[teny]

Hi Teny,

Thank you for your kind words. I know how difficult it can be to work through grief. In the past, I've found that often the door to recovering from grief is identifying the emotions your loved one created in you and then searching for ways (not necessarily people) that can create the same emotions.

Take care,

Stan

Thank you for your replay but I dont understand what do you mean by creating emotions,Since the one and only who gave me that kind of love affection admiration suport made feel desirible even in my 60 is not any more wityh me how can I have all the emotionscreated by his love?My life is gone and some days I wonder why Im still here.Love males the world go on .Where is my love?Thank you from far away.TENY

[Stan Goldberg]

Hi Teny,

I'm sorry I wasn't clearer. When I'm with people who were grieving the death of someone I cared for in hospice, each approached their grief differently. Some people just looked at the loss of a person they loved and thought, "I'll never find anyone like him/her again, my life is over" The grief of those people lasted a very long time, sometimes forever. But there were other people who approached their grief differently. They asked themselves the question, "What did my loved one give me that I no longer have?"

The answer for everyone was different. For some, it was companionship. For others is was feeling safe or a hundred other things. For these people, they didn't just look for a new partner. They looked for someone or something that recreated the emotion that disappeared when their loved one died. One man became a volunteer with a youth group, because he believed with the death of his wife, he no longer had the opportunity to give, which made him feel good. One woman who relied on her husband for travel, joined a group of women who traveled all over the world. So this is what I meant by my last post. Search for the emotion you no longer feel. Then try to recreate it through an activity, organization, one or more people. If you just look to replace the person who died, you most likely will never find him/her, or recover your joy.

The message that these people had was, you don't necessarily have to replace a husband or wife to start feeling good about yourself.

Take Care,

Stan

[teny]

thank you for your reply it feels good to have advise frm someone who has more experience and cares for people that are suffering.Have you ever been in Greece?Teny

[Stan Goldberg]

Thank our for your kind words. 30 years ago my wife and I were in Athens, Crete, and Santorini. It was one of the best trips we ever had. When we were on Santorini, I was having a drink in an outdoor tavern looking down on the Ocean. There was someone in shorts sitting on his balcony writing on a yellow note pad (no laptop computers then). That's when I got the idea to write, so I could do something anywhere I traveled.

Take Care,

Stan