As we mark the last day of September—a month globally dedicated to raising awareness about Alzheimer’s and Dementia—we reflect on the right of patients to live with dignity. Last evening, I attended a three-hour program organized by a centre that specializes in providing care to those affected by these conditions. For several years, my wife and I experienced the challenges of caregiving firsthand as we cared for my mother, who suffered from dementia. Eventually, we decided to seek professional help and moved her to one of these centres over two years ago.
Many families face similar experiences, and I wanted to dedicate today’s blog to this reality by sharing our story. While individual experiences may vary, the underlying challenges, shaped by cultural taboos and societal inhibitions, are common across Indian society—and perhaps worldwide.
We lived as a joint family, and naturally, there were the typical tensions between my mother and my wife, the classic mother-in-law and daughter-in-law dynamic. Over time, however, I noticed a growing insecurity in my mother, especially after my father’s passing in 2011. Despite being financially secure and receiving all the love and care we could offer, she became increasingly suspicious of us. Misplacing items like keys, clothes, and papers became a regular occurrence, followed by accusations of theft. She even claimed that we, in collaboration with her bank’s staff, were stealing from her account. When confronted with her passbook entries, she couldn’t provide any proof but still held firm to her accusations.
At this point, I realized that my mother needed professional help. But given her awareness of her surroundings, it was difficult to get her to a doctor. When I reached out to relatives for support, especially those with medical backgrounds, I was met with indifference. The stigma surrounding mental health and dementia was too powerful.
During the COVID-19 pandemic, my wife—a cancer survivor—and I, battling an immune disorder, were left to care for my mother alone. Her condition worsened: she stopped sleeping at night and refused to let us sleep either. With domestic help unavailable due to lockdowns, we struggled. I still recall one night when she fell, and the two of us had to lift her back to bed on our own.
We eventually found a full-time caregiver to stay with her, but while the caregiver managed her physical needs, keeping my mother mentally engaged proved difficult. My wife did her best to play games and interact with her, but it wasn’t enough. It was heartbreaking to see a woman who had once loved going outdoors now confined to the house, with friends avoiding her due to her behavioural changes. After four months, the caregiver left, and we were alone again.
In 2020, after several years of struggle, my wife and I convinced my maternal uncle to help us consult a psychiatrist. The diagnosis was confirmed: dementia. Treatment began, but caregiving remained a challenge. I vividly remember New Year’s Eve 2021 when my mother would wake up every half hour, banging on doors and asking to go home. With great difficulty, we found another caregiver. Though well-trained, this caregiver, too, struggled to keep my mother’s mind sufficiently stimulated.
When our children visited from the USA after the pandemic, we began exploring professional care centres. By then, my mother’s condition had worsened. She became abusive, refused to sleep, and made life difficult for her caregiver. Recognizing that we needed a break, we admitted her to a dementia care centre for three months, intending to bring her home afterward. However, upon our return, we found her calmer and happier in the centre. She had found companionship and was engaged in activities like colouring, singing, crafts, and even math, which seemed to slow her memory loss.
Today, her condition has stabilized, though she is often confused about her relationships. She thinks I am her brother, and my wife is her sister-in-law. She reminisces about times decades ago, talking about my grandparents and cousins as if they were still young. While she faintly remembers her grandchildren, she struggles to comprehend that they are now adults with children of their own. Yet, she is overjoyed to see her great-grandchildren.
It has now been 26 months since we moved her to the care centre, and although she no longer recognizes her present reality, she is happier and living a life of dignity. In her confusion and forgetfulness, there is a strange kind of peace. Her ignorance, it seems, has become her bliss.
I share this story to spread awareness and encourage others facing similar challenges to take action. Here are the key takeaways from my experience:
- Act early and seek medical intervention at the first signs of memory loss or behavioural changes, regardless of societal taboos.
- Don’t hesitate to seek professional advice and support.
- Build a network of people going through similar experiences.
- Engage professional caregivers when needed—they can make a world of difference.
- Keep the patient’s mind engaged in activities that stimulate their brain.
For those on this journey, remember that seeking help is not a sign of failure, but an act of love and responsibility.
Inspire Positivity 