Dementia is a psychological disease that involves an extreme cognitive decline, such as forgetfulness. The symptoms severely affect memory, thinking, behavior, and communication. After diagnosis, the symptoms become more critical with age. Experts agree that it is one of the most devastating diseases that place physical, emotional, and financial burdens on the patients as well as their families or caregivers. Neurologist Mr. Arun Batra said, “Dementia occurs due to damage and death of brain cells. As the disease becomes severe, the patients experience extreme difficulties performing their everyday activities, even the most common ones. The symptoms increase over time and cause the patients numerous difficulties.” In India, around 5.3 million people above the age of 60 were diagnosed with this disease in 2020, a recent report says. One in every 27 people in India has Alzheimer’s disease, the most common type of dementia.
We talked with Ms. Shivani Patel, a 26-year-old software engineer who lost her father to dementia two years ago. While sharing her story, Shivani said that her father Mr. Ajit Patel, a college lecturer by profession, was diagnosed with pancreatic cancer followed by dementia in 2015. Unfortunately, he couldn’t survive and died in 2019.
Sharing her story, Shivani said, “It was common for ‘papa’ to forget little things like where he kept the house keys or his spectacles. Most of the time, we used to ignore such things by joking around. But when he got tested for pancreatic cancer and dementia, the signs started to hit us in the face. Sometimes, I used to feel like I was just a stranger for ‘papa’ as he started to forget that I was his daughter. He used to stare at me cluelessly and continue whatever he was doing. I remember, one day, while returning home, I heard ‘papa’ asking ‘mummy’, ‘Where is my cousin sister?’ It took me a moment to realize that ‘papa’ was asking about me.”
Sivani shared that the oncologist informed them about her father having less than three months to live. It was a nightmare for Shivani and her mother to digest this cruel reality. She said that her father’s condition deteriorated rapidly after 2018. Her father started to forget to complete simple tasks like how to make tea or fold clothes. He used to behave like a clueless person who didn’t even know about his identity. “It was very disturbing for us to see him in this condition. After a point of time, ‘papa’ forgot to speak Hindi. He was a senior lecturer in City College for more than ten years. When he used to speak Hindi, his sentences were jumbled and made no sense most of the time”, Shivani added.
Shivani said that her father needed help in almost everything and started to suffer from severe pain during April 2018. It was necessary to get him hospitalized as she and her mother couldn’t take care of him properly anymore. He got admitted into the dementia ward of the hospital, and Shivani used to visit him twice or thrice a week. Witnessing the dementia patients was another challenging situation for Shivani. Sharing her experience in the dementia ward, she said, “The care team of the dementia ward was struggling to keep ‘papa’ there because of his severe symptoms like paranoia. I cried vigorously after visiting him in that ward for the first time. It was traumatic for me to see my father in this condition. I don’t know how ‘mummy’ visited that ward every day.” She shared that she once saw her father playing with a toy and blabbering with a nurse in that hospital ward. “‘Papa’ didn’t recognize me. I saw a patient running here and there; another was arguing with a nurse for stealing his newspaper; while one was playing with utensils. Most of the patients were above the age of 60,” Shivani added.
Shivani further told us that visiting the dementia ward made her think about the cycle of life. She shared that she eventually started to spend more time with her father. Unfortunately, her father died in 2019. “It was not easy for me to digest the fact that I would never see him again. During his last phase, I used to tell him that I loved him more than anything. I used to tell him everything that I couldn’t share with him while growing up. But I was relieved that his pain was over.” She shared with us that she misses her father terribly even after all these years. “Being a daughter of a dementia patient, I know how much strength it takes to witness your loved one slowly forgetting about everything and drowning in that painful condition,” Shivani answered when asking about how she coped up after her father’s death.
*(Names and places changed due to privacy concerns)