Last week my husband flew to Florida to say goodbye to his dear father, whose ten-year battle with Alzheimer’s disease was finally coming to an end. There’s a reason they call the disease (and other forms of dementia) the long goodbye. From diagnosis to death, it’s a prolonged series of farewells. My father-in-law, who never fully accepted his diagnosis, had to say goodbye to nearly everything that brought him joy and a sense of purpose in life…things like driving, paying the bills, tennis, long walks, reading, traveling, deep discussions and spirited debates and even his beloved bicycle. When it became too difficult for my mother-in-law to care for him alone, he had to say goodbye to his home of many years. Each goodbye was necessary but excruciating (for everyone). My husband, who took his dad to the Florida DMV to surrender his license, said it felt like being stabbed repeatedly.
As his family members, we had to say goodbye to the man we once knew long before he left this earth. He looked the same, but he had trouble remembering our names and could no longer read a menu. A man who used to travel the world as a contract negotiator and was a force to behold on the tennis court now paced the house incessantly and spent hours folding (and refolding) beach towels. My husband was extraordinarily close to his father, and they used to talk daily; over time these phone calls became shorter and less frequent until they stopped altogether.
As sad as my father-in-law’s death was, my husband insists the news of his diagnosis was even worse. While scientists are making progress, the disease is still 100% fatal and takes an enormous toll on loved ones and caregivers, who are at an increased risk of depression, anxiety and other health complications. Every 65 seconds, someone in America develops Alzheimer’s. For us the long goodbye has ended, but for others it’s just beginning. I wish I had some words of wisdom to share with them, but right now we’re utterly spent.