Commentary: How my father's dementia has destroyed us both
I have never known grief, until now, at age 48. I've been spared almost all of life's horrors and most of its disappointments, and experienced more than my share of its joys. I have been luckier than so many. But now, I am anguished by watching the mind of someone I love turn inside out. None of my education or life experiences could have prepared me for this. And I can't do anything to stop it.
Two months ago, I stood in a bare hospital room where my father — once a strong, stubborn, flawed and loving man — lay, now a frightened, crying and helpless dementia patient. Over the past eight years, 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 has frontotemporal and vascular 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 recently, he knew something is wrong, but he couldn't understand why he was in the hospital and in the adult mental health ward.
When he was diagnosed in 2006, he became one of at least 5 million Americans suffering from some version of Alzheimer's or dementia. Three years ago, during a minor operation to remove pins from a broken hip, something happened to dramatically worsen it. Perhaps a series of small strokes, doctors tell us. Whatever it was, he has never been the same. Ever since, he has suffered from hallucinations, rapid mental degeneration, sundown syndrome, agitation and fatigue.
During my latest visit, he knew something was wrong, though he didn't know what it was. He knew he was not at home, where he wanted to be, and he was 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 us. I was in tears as he repeated "Please take me home" and "I love you" to my mother, my brother and me.
I had not gone to see him for months, in part because I live 700 miles away; in part because I had not wanted to believe my mother's repeated warnings about his failing health. My father worked hard and honestly to support his family. He was an elementary school teacher and then ran several small businesses — an ice cream store and a printing shop. He spent every weekend working on our suburban house, tinkering in the garage, fixing and cutting and painting and even climbing on the roof to clean the gutters. He never shirked his duties to us, always did what needed to be done, while I could laze away reading books or half-heartedly stand next to him in the garage or his basement workshop.
He stayed the same, committed to his family and his work, while I went off to college, lived abroad, got married, and became a professor and then 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, he was curled up in twisted blankets on a single bed in a bare room in the geriatric psych ward. He is 81 years old, and his body, though weakened by years of his disease, is still 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 is 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, if 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. My mother kept him at home for the past three years, becoming emotionally and physically drained in the process. Now, though, she can no longer be his primary caregiver, as his confusion, agitation and restless wandering make him a danger to himself and to her.
A month ago, he was moved to an assisted-living facility. The workers there say they have experience in dealing with cases like his. But so far he has not adapted. He has lashed out at other patients and once again is in the geriatric psych ward of yet another hospital. If his rages cannot be controlled, if he is perceived as a threat to others, then there are no options left but a nursing home, where he may spend his remaining days and nights sedated and in restraints. Our medical system simply does not have any other answers for so many like my father and can offer little hope to millions of families.
I had never once thought that death could be preferable to life. But now I know that is not true, and whatever child was left in me has died as well.
Auslin is a resident scholar at the American Enterprise Institute.