Courtesy of pbs.org's "On Our Own Terms" website.
Nothing in life is more challenging than being truly "there" when someone you love is dying. Never will you be faced with so many difficult issues at once. You are trying to come to terms with the loss of a husband or wife, parent or friend. You are dealing with medical logistics and decisions, which can be complex and frightening.
It is not easy to acknowledge that you are angry, depressed, afraid, and anxious. You feel guilty, and even if your own life begins to fall apart you try to take care of a dying loved one all alone.
But you don't have to. There are people all around you--friends, neighbors, grandparents, teenagers--who want to help, but don't know what to do. Or are afraid to get involved.
There is a way to bring them together. You can share the care.
Our first experience in communal caregiving
took place when we formed a group with 10 other people to help our terminally ill friend, Susan, and stayed together caring for her for three and a half years. In our very first meeting, led by Susan's therapist, Dr. Sukie Miller, we set up practical systems of caregiving, explored emotions, and did exercises to discover not only Susan's needs but our needs as well. This meeting created an immediate bond that would keep us together caring for our friend for three and a half years. We called ourselves "Susan's Funny Family
We went beyond the simple things like cooking and laundry, shopping and errands. We learned how to talk to doctors, how to handle a crisis, how to find healing even if there's no cure for an illness, and how to talk about dying. Perhaps most important, we learned about the power of a group.
We found unique and creative solutions to a number of challenges. One was taking Susan for six months to an alternative-care center in the Bahamas, setting up an apartment for her there, and making sure someone was with her constantly. Perhaps our most rewarding accomplishment was the wedding of Susan's daughter. We planned and organized the whole event so Susan could be there just three months before she died.
After Susan's death, our group realized we had shared an experience that would profoundly alter our lives. Our care-giving system led to a book, "Share the Care," that has become the blueprint for caregiver groups all over the country. The book includes a script for holding your first meeting, a list of caregiving do's and don'ts, and a detailed workbook to get you organized and keep you going.
No matter how difficult it may seem, sharing the care can keep you from caregiver burn-out, give you people to share your feelings with, and perhaps, by connecting you with the larger human family, can ease your pain and help to heal your heart.
Cappy Capossela and Sheila Warnock are the authors of "Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill." Cappy works as a freelance writer and a lyricist. She has just finished her first musical. Sheila works as a freelance art director and has a feng shui teaching and consulting practice. Both live in New York City.
You can talk to the authors about setting up a care group at firstname.lastname@example.org or at Share the Care, Murray Hill Station, P.O. Box 1217, New York, NY 10156.