My husband disguised it well, but I knew.
I had known for the last seven or eight years. He was sixty-five and I was forty-seven. We had been married for sixteen years. The eighteen years between us never made a difference. His sense of humor, wit, intelligence, and gift of gab were incomparable, his laughter contagious. He was a knight in shining armor for me and for his family. He had always surpassed me mentally and physically. Until now.
In 1991, my husband was demoted, without notice or explanation, from his new position as president of a furniture company that spans three states. Within one month of the demotion, he quit the furniture company and took a job in airborne laser mapping. The new job required him to commute out-of-state during the week and fly home on the weekends.
One weekend, without warning, Red could not remember our home address. His short-term memory loss was obvious, and his grammar and comprehension were declining. Weeping like a baby, he declared, “Something is wrong with my brain.”
In the mid-1990s, Red was screened for Alzheimer’s disease. The screening amounted to no more than a short mathematical and verbal memory assessment. As far as his primary care physician was concerned, he passed with flying colors. I vocally rejected his doctor’s opinion, but to no avail. Aw shucks, I’m just the little missus. What do I know?
As the days turned to months, months into years, his good judgment waned and he became socially uninhibited. I would come home from work to find complete strangers on a tour of our home, chatting with Red over tea and crumpets. He would carry our financial portfolio with him in a briefcase for show and tell. He would fixate on bald gentlemen, point and laugh. Spitting and passing gas in stores became a daily, exhilarating event for him. Red would no longer urinate in the toilet, only a sink. I once caught him drinking water teaspoon by teaspoon from the kitchen faucet.
For two years, all he ate was store-bought fried chicken. He forgot the names of familiar objects and people. Was I imagining this? My husband of sixteen years was acting out like a three-year-old. Red was scared and confused. In lucid moments, he talked of committing suicide.
On October 13, 1998, my fear was realized.
After days of testing at the Mayo Clinic, our lives went to hell with the diagnosis of one word: dementia. I had a clinical diagnosis and MRI to back up what I had known for years. With the doctor’s declaration, I launched into profanity. I suppose it would have been more tasteful to sit silently and weep. Truth be told, I envisioned turning over office furniture and throwing every chair in the room out the window. That might have been in bad taste, but I would have felt better. The diagnosis did not faze my husband.
During the next few days, I wrapped my brain around what the future had in store for us and briefly considered turning to alcohol. I was now a statistic and my husband’s principal advocate. Our journey into the unknown was underway.
Within a year of my husband’s diagnosis, I became a poster child for caregiver burnout. My tolerance at home and work had diminished. I was devoted to my job of ten years at the Desert Botanical Garden, but it was obvious to me that it was time to move on. The staff and volunteers had no idea what I was going through at home, and I was not willing to share for fear of making it an excuse for my behavior. It was not their problem. I was short-tempered, absentminded, tired—but never late. I would not survive working with the public and volunteers by day and caregiving for a dementia patient at night. The role of fecal and fecal fumes manager on the home front was enough to cope with.
All at once, our world became very small, and we were trapped inside our own private prison. I had lost my partner and misplaced myself. Becoming the boss of both our lives was not a role I would have chosen to play.
Dementia is a long-term life-altering disorder that one cannot endure alone. Could I make the most of what we had and employ my questions, mistakes, and successes as a teaching aid for myself and others? My husband was counting on me, and my own sanity depended on it.
As a caregiver, your personal time is very limited. How are you going to become your patient’s protector if you have no experience, time, or resources available? This text is a user-friendly guide for the long journey ahead, designed to help you choose your battles, plan for the future, and become proactive in the health and well-being of your loved one. It also includes the visual evolution of a dementia patient—my husband, Red. The images of my husband are meant to educate, not shock and embarrass.
Current statistics indicate there are as many as six to eight million people in the United States and potentially thirty-five million in the world suffering from dementia. These are astonishing figures. Even more astonishing? Experts predict these numbers will continue to double every twenty years, unless we have some significant medical breakthroughs in dementia prevention and treatment.