The book "Relentless Goodbye" by Ginnie Horst Burkholder is an extremely well-written, care-giving memoir that would be great reading for professionals, current caregivers in a home or facility setting, as well as friends of a caregiver.
Ginnie generously shares her life, thoughts, and emotions as a caregiver for her husband, Nelson, as they journey together through his illness with Lewy body dementia. This form of dementia has symptoms similar to alzheimer's, plus kinetic symptoms like Parkinson's. Life expectancy after diagnosis is 7 to 20 years.
In the foreword, Alan D. Wolfelt, PhD, director of the Center for Loss and Life Transition, states that there is value in telling "the story" as it is a part of mourning and brings healing in addition to helping others. He says, "love is a verb" and endures.
In 1991, Nelson needed help following directions which at first was blamed on sleep disturbances. In the next five years doctors came up with numerous other diagnoses. Finally in 1996, at the age of 51, Lewy body dementia became what is believed to be the correct diagnosis.
I was most impressed with Ginnie's enduring love for her husband and fascinated with Nelson's symptoms, especially his "word salads." At the end of the book Nelson is in a nursing home and Ginnie continues her role as caregiver.
One of Ginnie's journal entries: "God, are you on this rollercoaster for sure and certain? If you're not, I'm bailing here and now."
In another excert, Ginnie says, "I've heard people say they wouldn't change a thing about the difficult experiences they've had. Maybe someday I will say that. I just know that I'm not there yet."