I worked as an editor in book publishing before becoming an independent writer and editor. As editor of a line of paperback books at Fawcett, I oversaw the editing of several anthologies and documentary histories, and edited some anthologies myself, including Contemporary Latin American Short Stories
. But I later became (and still am) an independent writer-editor, which enabled me to spend the final months of my father's life helping to care for him.
My dad was relieved to be able to die at home, instead of in a nursing home. He and my mother were staying at my Aunt Gene's home in Los Angeles, near where he was being treated, and I had flown out there from Washington, DC, to help.
Never having been around someone who was dying, I didn't know what to expect or how I could help him, and the books I found in the library and bookstores in 1990 were not much help. The hospice workers who came to my aunt's home regularly were enormously helpful, both with practical advice and with emotional support -- especially when Dad was anxious, or Mom and I were arguing about whether Dad was taking too much medication to lessen his anxiety (Mom was worried he would become addicted--a common fear in this situation, which his doctor assured us was not a problem). I could have used a book like Dying: A Book of Comfort
, to explain the many conflicting feelings we were all experiencing!
My experience helping Dad in his final months was surprisingly positive. And though Dad held no religious beliefs and specifically insisted that nobody preach over his body when he was buried, it was more of a spiritual experience than I expected, too. I had no way to realize how important it would be in my life that I had helped Dad as he left his.
The next year, when Barbara Greenman, an editor at the Literary Guild book club, asked me if I could put together an anthology that would help either those who were dying or those who were helping them through their final illness, I quickly agreed to do so. I knew there was a need for such a book. And I did it with people like my father in mind. How do you comfort someone who is dying and does not believe in God or heaven?
But we both quickly agreed that the anthology should cover all aspects of grief, from the moment we learn people are dying until after they are gone and their survivors are grieving their loss. We spent a year choosing the material for the anthology.
The book had a wonderful start: the Literary Guild edition was beautiful and quickly won glowing praise -- first of all from Dame Cicely Saunders herself, who had developed the hospice concept. Then Warner Books brought out a paperback edition, which had the same content but was not as lovely a gift book as the Guild edition had been. When Warner let its paperback edition go out of print, I asked the Guild to do a special printing of its little hardcover edition, for the many people who kept asking how to buy copies. I am glad to report that the wonderful small gift book edition is now available again, chiefly through this website (a print-on-demand paperback is being sold online through Amazon.com and Barnes & Noble). I developed the website to provide additional material and either practical information or links to places to find it:
On funerals, memorial services, alternatives to both, and the wonderful options for honoring a life;
On caregiving and survival (because many who face mortality do survive, and survival changes them, and those who care for the critically or chronically ill face burnout and other problems;
On coping with chronic, rare, and invisible diseases and disorders, for which both risk and fear of mortality and disability are often great;
On leaving behind a written or recorded legacy of your life--something to help people remember you.
Since DYING was first published, I have written several books, including a history of the NIH Clinical Center, perhaps the largest, most important research hospital in the world. I've combined an interest in medical and health care writing with an interest in helping people write their life (or organizational) stories. My histories (based on interviews, not documents) include a history of the department of psychiatry at the University of Maryland School of Medicine. Eventually I will get back to writing a collection of patient stories -- of medical mysteries, from the viewpoint of the patients and their families.
I live in Bethesda, Maryland, where I teach workshops in life story and legacy writing (at the Writer's Center and in Montgomery County libraries). I believe one of the best ways to comfort those you leave behind when you die (or to help yourself when you lose your memory) is to write an honest account of what went on in your life and the life of your family. You don't have to die to share your story, and the process of writing in my students' experience is remarkably therapeutic -- indeed, life-affirming. I greatly recommend it and have included on this website lists of (and links to) resources to help you. Helping people write their life story can be helpful in surprising ways.
Think how much more attentive care your aging mother will get, for example, if you post a brief version of her life story on the door of her hospital room. You will also find links to memoirs by people who have written about their encounters with illness and other crises. Let me know if there are any I have missed and should look for.
-- Pat McNees
“Pat McNees is one of my favorite writers,” said Barbara Greenman, former executive editor of book development at the Literary Guild book club. “She put heart and soul into the project we did together, the anthology Dying: A Book of Comfort. Instead of using only her own experience helping her dying father, she researched the literature, found out (or intuited) what people facing a death or bereavement might need to read, and after finding an amazing amount of wise and wonderful material did a beautiful job shaping it into a gem of a book, which has helped many, many people. She was realistic about publishing realities, easy to work with, and knowledgeable and thorough about copyright and permissions (she teaches a course on the subject). Most important, she managed to make readers feel that dealing with a death could be a life-affirming experience. Over my 20 years here, Dying is the book I am most proud of publishing.”
Pat teaching report writing for UNESCO and UNDP, in Burma in 1991, after her father died and as she began gathering material for DYING: A Book of Comfort