As former Prime Minister of India, Indira Gandhi said, “Life is a continuous process of adjustment. “When my father suddenly passed away nearly twenty years ago, I never thought my privileged happy go lucky life would crash. Gradually, within two years, my mother’s mental state started to decline with clouded decision making, irritability, and her million-dollar-watt smile faded and eventually became non-existent. Hindu Priests manipulated the fact we are Brahmins, and created a paranoia in her delicate mind because they reassured her we did not perform my father’s rituals properly. Their solution was to instill fear at an emotional and financial price. My mom, my best friend, my sister suddenly felt like my enemy because we could not see eye to eye on anything, creating major meltdowns.

It was impossible for me to comprehend what was happening. Was she severely depressed, brainwashed or just losing the plot. It was very challenging for me to confide in people because I was ashamed to air our “dirty laundry” in public or even admit my mom possibly had a mental illness. I wanted to cry for help, but people would say my mom is naïve and delicate like a flower. Fast forward nearly two decades, at the age of 69, my mom has been officially diagnosed with dementia, a disease of the mind.  Earlier this year, when I interacted with some Aunties and they inquired about my mom, and I told them about her diagnosis they said… she did it to herself.

The fact is she did not do it to herself, nor does she deserve to go through this journey alone. Dementia particularly vascular dementia does require a medical diagnosis and sadly cannot be cured.  For those who are not aware dementia symptoms include:  cognitive decline, disorientation, mental confusion, irritability, personality changes, wandering off, hallucinations, etc. There are days when her personality is non-existent, yet there are days when she behaves like a child at Disney World. Believe it or not, there are even days when she can’t even register my brother’s name and calls him by another name, or does not realize that she has three beautiful grandkids. The reality is, we cannot even talk about our papa because she thinks he is not dead, but rather ran off to be with another woman. No, she is not crazy, she has an illness that is slowly eating her brain away.

Just recently, I asked her if she would like to go to Patel Brothers to shop for groceries.  The child in her immediately lit up and agreed to join my friend and I. Then suddenly in the parking lot, she became hesitant and withdrawn. She told me to buy the groceries and she will sit in the car because she does not want anyone to see her using a walker.  She was terrified someone we know would recognize her, ridicule her for her appearance and dependence using a walker. I reassured her, and told her who cares what the world will say, I am your daughter and no one will say anything to you.  She smiled got out of the car and walked the entire store aisle by aisle by herself with her walker.

Our Indian culture is beautiful, and I am proud to be Indian, yet I believe our culture is intolerant especially in regards to mental health issues. As a first generation Indian-American who works full-time, and is a caretaker for my mother, I want to be the guiding light for those reluctant voices who want to seek help, but afraid to. Yes, my life is in a continuous process of adjustment but when I go to bed I can confidently say I am trying my best and I do not care what the world has to say about my mother’s illness.

The author, Usha Tewari, is a first generation Indian-American who works and lives in Orlando, Florida.