I had been waiting anxiously for the book to arrive. "Living in the Land of Limbo" is an anthology edited by a school friend from my little hometown of Portville, NY, Carol Solomon Levine.
I pre-ordered the book from Amazon and it arrived a few days ago. Two hours later, I was well into this wonderful book of stories and poetry about caregiving. The book is organized by types of caregiving: child/parent, husband/wife, parents/children, relatives/lovers/friends, and paid caregivers.
I and other caregivers of the elderly with memory loss could have written the first story, "Diem Perdidy" by Julie Otsuka, ourselves, had we been blessed with her talent for words. The story is a recitation of the things her mother remembers and a longer list of the things she has forgotten. She remembers the infant she lost, but does not know the daughter who is her caregiver.
Because they are truth-based fiction, the stories and poems can be disturbingly blunt and honest, without fear of hurting a loved one's feelings. The tales tear at the heartstrings; they give one pause to reflect on the ordeals we go through as caregivers, and how we treat our patients while looking out for our own wellbeing. The stories allow the caregiver to vent and rage, then finally retreat selfishly into oneself in remorse, without hurting others. Most of all, they make us aware that there are thousands of others out there just like us, dealing with the day to day trials and stresses of caregiving.
I laughed and I cried my way through this anthology featuring some of the most renowned authors of the last century. The authors, at times, unashamedly admit to wishing for the passing of their loved ones. But, they make the reader understand that the wish comes from a desire to see the release of the patient from mental and/or physical pain, rather than a selfish wish for themselves to be relieved from the responsibility of caring for their loved one.
Mr. Cassidy, for instance, told himself he couldn't go to communion because he wished his wife dead. That resonates with the feelings of guilt we all have about our inability to cope with our loved ones' pain and loss of person.
Editor Carol Levine was herself a caregiver during the many years her late husband spent as a quadriplegic following an auto accident. She is one of the foremost authorities on caregiving and directs the United Hospital Fund's Families and Health Care Project, which focuses on developing partnerships between health care professionals and family caregivers. In 1993 she was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics. Her articles have appeared in the New England Journal of Medicine and the Journal of the American Medical Association.
"Living in the Land of Limbo" is a book that you will want to read (devour) and keep on your bookshelf to give yourself a lift when you find yourself overwhelmed with the daily drudgery and frustration of caregiving.