As the disease progressed, we went through our own tumultuous journey of denial, ignorance, frustration, realization, and final acceptance. The first stage was one of utter disbelief and denial. None of my siblings or I wanted to accept that something could be wrong with our mother. After all, she had always been in control, always in charge. While my father had been the quiet pillar of strength, my mother had been our driving force. We attempted to overlook some of the more innocuous mistakes, like her misplacing keys, or repeating questions, or forgetting names.
The irony of the situation was that my mother had always had a photographic memory. She could remember dates and names and all sorts of trivia. In fact, on a trip to the Taj Mahal and Fatehpur Sikri, she had rattled off dates and names, much to the embarrassment of our flustered tour guide. She was equally adept at answering questions at quiz contests, almost always scoring the maximum points for audience participation. I always marveled at how she could remember birthdays and anniversaries of all her nine siblings, their spouses, and their children. Whether it was British history or Indian history, she could recall details that she had studied decades earlier as a college student. She had an immense passion for learning and never really stopped—until she forgot how to read.
Gradually, my mother became socially withdrawn. This was completely unlike her, since she had always been a gregarious person. Having grown up in a large family, she was used to being surrounded by siblings and relatives, she reveled in the company of family and friends, and our home had always been a social hub, whether she was playing mahjong or entertaining. When she had visited me in California in the early 1990s, before she was afflicted with the disease, she had thoroughly enjoyed my friends. This change in personality was confusing to all of us. How could someone who had been so outgoing suddenly become so reclusive? In retrospect, I think my mother withdrew deliberately because she knew there was a problem and was struggling to deal with it as best as she could.
My mother had always been an avid reader and prolific writer. Whether it was the latest James Hadley Chase (her favorite detective novelist), or the newspaper, The Illustrated Weekly of India, or even Stardust, she was always reading. Her letters were interesting and entertaining, full of tid-bits and gossip, laced with humor and sarcasm, her anecdotes sometimes verging on the burlesque. She enjoyed writing letters, and I loved reading them. When she stopped writing, it was catastrophic for me, as though I had been shut out from that part of my life that I had left behind. Those were the days when phone calls to India were rather expensive and letter writing was still in fashion.
My mother’s short-term memory lapses resulted in confusion and gross misunderstandings in the early stages, when we were still unaware of the devastating effects of Alzheimer’s. She would forget conversations and important information. My brother called her one morning from Delhi and said that he would be coming home that night by the evening flight. Not only was she taken by surprise and shocked to see him that evening, but she had also forgotten to tell our father about it. I realized then that I could no longer depend on my mother to pass on any significant information to my father.
This was also the time when she gradually lost her speech and was no longer able to communicate with us. We worried that she would leave the house and not be able to find her way back. She needed constant supervision for her own safety, especially when she was in the kitchen. At one point, she had left the house with a gas burner on and narrowly escaped a major disaster.
The most hurtful stage was when my mother became delusional and started hallucinating, regarding our family as strangers. This was a period of emotional outbursts; she would become defensive and belligerent to the point of violence. This was hardest on her grandchildren, who were completely bewildered to see their otherwise doting and affectionate grandmother transformed into a complete stranger. As adults, we realized that the disease had taken over and tried to deal with it as best as we could. This was most arduous for my father, who witnessed the aberrations on a daily basis as he saw his beloved soulmate gradually slipping away.
I have been visiting my parents in India every year, sometimes twice a year, if I am lucky. In the early years, my mother would be absolutely delighted to see our family, and equally distressed when we left. There were months of excitement and anticipation in preparation for our arrival, and then it would be a whirlwind of visiting friends and relatives, shopping and feasting before it was time to pack our bags again. My mother would be despondent for days before our departure, just looking forward to our next visit. However, as the disease progressed and her memory faded, she became increasingly detached. She would drop us off at the airport rather dispassionately, when earlier we used to cling to each other in tears until the last call for security check was announced. Her indifference was agonizing, but at least she was spared the heartache that we felt.
Most Alzheimer’s patients live from seven to 10 years with the disease. But my mother is on her 14th year, thanks to my father, who has ensured that she has the best possible care. At 84, he is her primary caregiver. Meticulous about her nutrition and her medication, my father has created for her an environment of good cheer and positive energy. Consequently, my mother has not lost her will to live. For, as she sits in her living room, surrounded by photographs of her loved ones, enveloped in an atmosphere of warmth and affection, listening to her favorite Rabindra Sangeet, at some sub-conscious level, she must know that she is deeply loved and still the center of our universe.
Sravani Banerjee is on the English faculty at Evergreen Valley College in San Jose, Calif.