Last week, I made an unplanned trip to Delhi, following a brief update from my brother. “Maa is unwell,” he informed me the night the world was celebrating Diwali. The ‘what’ of it was left vague. With the number of Covid-19 cases being on the rise in Delhi, the hypochondriac in me had been palpitating about contracting the virus. Every time I feared the prospect of travel, I reminded myself of the deep-seated anxiety I had sensed in my brother’s voice. Finally, I took the flight with two layers of masks, face shield, gloves and silent prayers. By 2am, I was at the doorstep of my West Delhi home. Mother was not there. She had gone to spend the night at my grandma’s, my brother told me. Could much ado have been made about nothing, I wondered.
Maa was brought home by the driver at 11.46am. Her hair seemed grey-er, she seemed to have become frail, and had ditched a few pieces of jewellery Bengali married women customarily wear. If she was over the moon seeing me, she concealed it well. Calm and composed, she walked into the living room and gazed at me. “What’s your name, beta? my mother asked.
In 2018, my mother, then all of 65, was diagnosed with dementia. I was in denial for most part of that year. A woman with as healthy an appetite for life as her could not simply be losing her memory. Or so I then thought. The first rule of the diagnosis, the doctor told us, is not to express your disappointment in front of the patient. Entangled between what they remember and what they forget, the mind of a dementia patient is a fragile plane. It is also often prone to depression, I was told. I thought I knew the challenges her condition would present, having closely cared for an aunt who had Alzheimer’s. But my mind could still not process how bad things could turn. Neither when I found myself putting chits in her bag that spelt out her name and address in case she forgot the route to her home, nor when she failed to keep a track of time. My mother’s question that morning had fast-tracked my journey to the final stage of grief — acceptance.
They say acceptance is a calming spot — there is comfort in acknowledging one’s helplessness to oneself and working around it. But even in the final stage, the mind tends to bargain for just a little more. “What if the change of medication revives her memory?”, “If she can remember what happened 15 years ago, there is still hope” or “She will be just fine if she eats well”. Assurances reign supreme, while we quietly mourn our extinction from a loved one’s memory. A loved one who is also losing something every day — precious memories, a sense of purpose and, most importantly, a sense of self. Suffering is personal, but dementia makes it frighteningly lonely as it advances. As Wendy Mitchell, a dementia blogger who was diagnosed with Alzheimer’s at the age of 58 and later wrote the first dementia memoir Somebody I Used to Know, told Financial Times, “When people think of dementia, they think of the late stages. They forget that there is a beginning and a middle. Now we are not prepared to accept that the diagnosis is the end, so we’re trying to give others that little chink of hope.”
According to the World Health Organisation, around 50 million people in the world suffer from different forms of dementia, with 10 million cases being added each year. Underneath the numbers, there are also personal and painful experiences of families and caregivers. Caught between reminding their loved one of a shared past and making the present memorable, they experience emotional upheavals while keeping a sense of calm. These struggles, while not always spotlighted enough, also contribute to a dementia patient’s journey.
As I bid her goodbye while returning to my life in Dubai, my mother looked stoic, as though my absence would only add a fraction to the monumental void that had already enveloped her life. I often wonder how will I mark my presence in her mind this stage onwards. By freeing the present from the clutches of the past? Perhaps, just perhaps.