In the summer of 2012, I stood in a bare hospital room at Cartersville Medical Center in Cartersville, Georgia where my father — once a strong, stubborn, flawed and loving man — lay, now a frightened, crying and helpless dementia patient. Over the past year, he has lost much of his cognitive ability. And worst of all, with his type of dementia, he is aware of what is happening to him, even as the rate of his decline accelerates. Like a caged animal, he’s desperate to escape.
Despite the long-shot comebacks that sometimes happen for patients in other situations, there is nothing that can restore my father or the millions like him. Worse, there is nothing that can delay his inevitable descent. As adults, we give lip service to the idea that we can’t control the world around us, but most of us don’t really understand what that means until we’re faced with a curse like my father’s. We don’t really believe that a lifetime of work and plans can be erased by the crumbling of our minds or bodies.
My father had sundown syndrome dementia. The doctors say it is perhaps the most difficult form of dementia, leaving him with no control over his emotions, no short-term memory and no ability to make sense of the world. He lives in the instant, repeating the same question just seconds later, unable to remember that he has just been given an answer. When I saw him during visitation, he knew something was wrong, but he couldn’t understand why he was in the hospital and in the adult mental health ward.
When diagnosed in 2006, he became one of at least 5 million Americans suffering from some version of Alzheimer’s or dementia. He woke-up one Sunday morning and did not know where he was at. He couldn’t even tie his own shoes. Rushed to the emergency room that day to discover the issue. Three years before, during a minor operation to implant a snit in his heart artery, something happened to dramatically worsen it. Perhaps a series of small strokes, doctors tell me. Whatever it was, he was never been the same after that operation. Ever since, he suffered from hallucinations, rapid mental degeneration, sundown syndrome, agitation and fatigue.
During my last visit, he couldn’t understand what was wrong. He knew he was not at home, where he wanted to be, and enraged by the fact that he was not in control of his life. Over and over, he asked what he did wrong and why he was in the hospital, and he apologized for hurting me. I was in tears as he repeated “Please take me home” and “I love you.”
He stayed the same, committed to his family and his work, while I went off to college,, got married, and became a writer. No matter where I was, he reminded me that I always had a home to return to and a father who would protect me.
Yet when I last saw him, curled up in twisted blankets on a single bed in a bare room in the geriatric psych ward. He was 77 years old, and his body, though weakened by years of his disease, is strong enough to keep going — and keep fighting. Our presence in his room agitated him. He beat his fists against his head, saying over and over: “I wish I were dead.” Seeing what he’s cursed with, a heart attack, perhaps even cancer, seems merciful.
I stroked his head on the pillow, trying to calm him, the way he did for me when I was a sick child. This man, who protected me when I was little, I now have to leave alone at night in a dark room in a cold hospital ward far from his home.
I know that, given half a chance and a second of lucidity, he would kill himself.
What is most frightening is that none of the many doctors and specialists he has seen have found a way to keep him stable, to dampen the rages that cause him to strike out at his caregivers.
It was my senior at Berry College when I made a major decision about college and my family. I left school to take care of my father’s health needs. The money used for to pay for school had to now be used for my father’s health care needs. So I dropped out. And applied for social security disability. That was the only way I could have a monthly set income. The whole process of applying took eighteen months from beginning to end before I started receiving a monthly check to live on. The check is not a lot but its better than having nothing for an income.
My father was my rock. He believed in me and believed I could what ever I put my mind to in life. Always a big supporter of my education because he would tell me that education is one thing people can never take away from you. He passed away on January 31, 2013 in Rome, Georgia. I sure do miss him! But I know he is in a better place now feeling no pain.