Can't Stop Falling, A Caregiver's Love Story

“Your wife will go within six years. Forget yourself and learn to be a caregiver,” the neurologist said after diagnosing my wife’s mystery disease as PSP, Progressive Supernuclear Palsy--a rare version of Parkinson’s. For five years we’d been wondering what was wrong, only to learn we must keep battling the unknown. This book chronicles how my Marilyn’s world crumbled and what kept her from giving up. Shortly after getting married, we’d traded a conventional lifestyle for living off-the-grid on a remote Colorado mountain top. This adventure caused financial lows and emotional and spiritual highs, knitting us into a solid unit lasting 25 years. The next eight challenged it. When physicians could only prescribe anxiety pills, she replied, “I am NOT depressed!” She and I had just retired and moved into our dream house in the mountains of North Carolina and were still the happiest couple in America. I knew nothing about caregiving except that I was temperamentally unfit for it, being used to a lifetime of staying active outdoors. At first I handled her repeated falls and gradual decline, but eventually admitted to needing help--but lacked finances and couldn’t find local, state, or federal assistance. Being a writer, keeping a daily journal helped keep me sane. I wrote about small things like adding hand grips on walls or buying baby monitors to let me know when she’d fallen upstairs. I recounted bigger challenges like nursing homes or hospice or not giving in to doubt, despair and denial. I rehashed anger over friends not there to help. I told of terrible grief during and after Marilyn’s death—how her faith kept her strong but mine couldn’t. Friends encouraged me to publish the journal, saying other caregivers could profit by learning what did or didn’t work for us. Nowadays everybody knows at least one caregiver; America has over forty-three million in need of help. Most start off as I did, not knowing what to do. Ignorance added to loneliness and grief always produces denial and despair. For those who have enough money or can detach emotionally, assisted living and nursing homes can provide a solution: let someone else take responsibility. Others have to choose my path of caring for their loved ones at home. “How to” books provide some answers to practical problems, but don’t help submerged emotional and spiritual needs. I wanted this book to address these deeper needs by dramatizing two ordinary people struggling to keep love strong. One day I realized the work’s subtitle, “a caregiver’s love story” wasn’t just a tag-on. The memoir had to tell the beginning of our life adventure, not just its end, because that’s what made our love truly unconditional. I went back to writing, this time about the first half of the marriage that friends called the most unusual they’d known. Now readers who enjoy creative prose can live vicariously through our ordeal. It marries a narrative of our unusual, happy, and exciting early life adventures to the original journal about later difficult caregiving times. The chapters move back and forth from Colorado mountain-top homesteading or farming in Wisconsin to finding a little-known “Money Follows the Person” federal program to replace nursing home with living at home. After Marilyn’s decline took a dive, our perfect union started coming unglued. Her conventional religious faith stayed strong, but my unconventional spirituality didn’t. Reading this memoir, friends get surprised when I tell them my great anger subsided the morning I held my love tightly in my arms and whispered it was time for her to go. “You’ll be in a better place; I’ll soon be with you,” I said, not knowing if I believed it. Faith surfaced as I accepted the inevitable and learned how to help her die as she wished. The words “love story” in the subtitle don’t begin to explain the complexity or depth of what we went through. The work itself does, and I hope will help other caregivers live through their grief.