So many years of our adult life were colored by the tragedies that came with my mothers Alzheimers. The pain was made worse by the realization her disease started slowly, almost imperceptibly, maybe years before we detected the symptoms. And yet, it is a family suffering known to millions.
Im convinced she lived in perpetual fear and never told us there was a problem. It was her private hell, this slow and irreversible descent into dementia.
I still remember the time we visited her for Sunday dinner and walked into the kitchen to find it ablaze because she forgot to turn off the stove, and we finally had to confront the terrifying realization that this was more insidious than simple forgetfulness that comes with old age. It was a dangerous situation, and we didnt know what to do about it.
The succession of near-tragedies accelerated until our lives were taken hostage by a desperate sense of helplessness, worrying about what would go wrong next. As her condition worsened, she argued with my father over inconsequential things, over what he said and didnt say, over what he did and didnt do.
Most of the time, it was all in her head. She seemed to have an inner reservoir of anger that could overflow without provocation, and we never knew why or when.
I recently thought of those harrowing years when I read about Maria Shriver and her father, Sargent Shriver, who suffers from Alzheimers.
"At the age of 93," she said during a Senate hearing, "my Dad still goes to Mass every day. And believe it or not, he still remembers the Hail Mary. But he doesnt remember ME Maria. Id be lying if I didnt admit that that STILL makes me cry."
She went on to say, "Shriver was an idealistic, intelligent, optimistic public servant sharp, witty, a walking encyclopedia his mind a beautifully tuned instrument that left people in awe. That was then ... today he doesnt know my name. But thats the heartbreak and the reality of Alzheimers."
Margaret Thatcher, 83, had once been a powerful world leader, an indomitable woman with an intimidating intellect. Thatcher, who took power in 1979 as Britains first woman prime minister, has been suffering dementia for more than seven years.
In a recent memoir, her daughter Carol wrote: "Losing Dad was truly awful for Mum, not the least because her dementia meant she kept forgetting he was dead, and I had to keep giving her the bad news over and over again."
That was our life. Constant reminders. Constant repetition. Constant sadness. There was the day my mother saw an old photo of herself, my father and me at 9 years old. She pointed to me in the picture and asked, "Whos he?" "Thats me, Mom," I said with a sadness Ill remember the rest of my life.
More than five million people in America suffer from Alzheimers, and an estimated 10 million baby boomers will develop the disease, which is the sixth leading cause of death. The disorder, which is progressive and fatal, destroys brain cells and leads to problems with thinking, behavior and memory loss.
It also takes an enormous toll on the caregivers. My father insisted he didnt need help, but in the end, he died first, which often happens to those who endure the prolonged stress of caring for a loved one.
Several other family members have suffered from Alzheimers, including my father-in-law. The day came when my wife visited him in the nursing home, and he no longer recognized her.
"Daddy, its me," she said. "Sandy."
"Sandy?" There was painful confusion in his eyes as he struggled to remember who she was. He tried to make conversation, but it was apparent he couldnt resurrect the memories of his own daughter, and when we left, he was sitting in his chair, staring vacantly into the distant world he inhabited, far from our own.
J.F. Pisani is a writer who lives with his family in the New Haven area.