Road Map With No Options
Date: May 14, 2012
Just to give you the other side of the “Alzheimer’s coin”… I read The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss [Winter, Books] three years ago when my wife of 48 years began to show signs of this devastating disease. I also joined a support group and participated in medical studies at University of California, San Diego. Our primary care HMO, Kaiser-Permanente, did not have any such group, which surprised and disappointed me greatly.
As for the book, I found it to be immensely depressing and without a hint of hope. As my wife’s condition progressed, so did mine. My neighbors, whom we’ve known since we moved to San Diego in 1967, virtually abandoned us. The silence was profound, especially over the last two years of the siege when I could have used their help. I learned a lot about friends at that time and have not attempted to rekindle what we used to have.
After my wife died at hospice (the only positive experience I had during all this time), I was encouraged to write about my experience. After resisting this idea for 10 months, I finally mustered enough courage (and handkerchiefs) to record our common experiences. You may wish to read this now that I've posted it. Just look for my name (“Strohlein”) or the book’s title: Don't Die in San Diego.
I now realize that no book, no matter how well written or well intentioned, could possibly alleviate the suffering and despair that faces the caregiver. Worse was reading a book that clearly presented what lay ahead and which, for me, became a road map with no options and certainly no turning back.