Bit by bit, dementia made him slip away. The beginning of the end came when he got lost in the city
“You are a hero.”
“Not really. The strength just comes to you.”
Her clear voice sounds like she’s next door, but we aren’t even on the same continent, forced to undergo the same sombre routine of countless others around the world: swapping sadness via WhatsApp.
Last week, her dad died. By the time I call, he has been cremated. In a pandemic, everything demands a shortcut, even the time-honoured rituals of grieving.
We have known each other since we were mere children discussing the length of our dress and hair, although the nuns who taught us brooked no latitude with either. Growing up in India, we lived in a university “compound” in houses reserved for faculty from every department from history to chemistry. It only struck me years later what a rich start it was to be steeped in that environment. We went to the sole functional girls’ school and our brothers to its counterpart: this lack of choice would be the making of us and the foundation of friendship.
Our fathers were professors and the heads of their departments. Indian families can be nosy about other people’s children, but when I entered medicine, her family took an honest delight in my achievements. Every holiday, they hosted a special dinner for me. This was slightly embarrassing for a medical student with little real knowledge, but my reservations melted at the sight of the feast. I wanted to earn their pride and hoped one day to repay their goodwill.
As a doctor, I field all kinds of worried calls from friends and friends of friends. It can be perilous to say too much without knowing enough, so I stick to suggesting practical questions to ask their own doctor to best understand their situation. Empowering patients thus seems to be the most appropriate use of my skills. But the most frustrating part about my friend’s situation was that her father’s illness knew no cure. All one could do was watch the progressive decline that is the hallmark of dementia.
Those who care for relatives with dementia often describe how a loved one slowly slips away, physically intact but unrecognisable bit by bit by bit. At the peak of his powers, her dad was a respectable academic and, like so many people of his era, not only an expert in his own field but also a man interested in the world. On any given evening he might be found arguing about politics, grocery prices and university governance. In between he was grading papers, advising students, guiding his own children, and walking daily.
The beginning of the end came when he got lost in the teeming metropolis. Before then, his memory failing, he would still take walks which kept his body fit and his mood stable. His daughter had surreptitiously warned the doorman to keep an eye on him, but it wasn’t really needed because he always came back. Until the day he didn’t.
For hours she trusted him to return. Then in a panic she called the police, all the while fearing that he had walked into the traffic. But when found, he had endearingly made himself part of some committee meeting on nearby grounds – a hark back to his university days.
My friend is a pragmatist. Determined not to lose him again, she labelled all his clothes and slipped identity tags into his pockets. It seemed dispiriting but if it kept him safe – so be it. To those who look on from the outside, it is impossible to imagine the emotional toll of such caregiving with no end date, but in all those years, I never once heard her protest, such was her filial devotion.
Dementia places many indignities on sufferer and carer. On the wards, I encounter adult children who can’t bear to see their declining parents soil themselves, while others are distressed by their labile temperament. Some are amazed by the apathy while others dread the disinhibition.
What broke my friend was a visit to the bank. Trying to sort out important financial details, she alarmingly discovered that her father could no longer sign his name. The bank politely suggested an alternative. Thumbprints have been used in India since time immemorial by illiterate or semi-literate people who find it difficult to develop a unique written signature and who may use a thumb impression on official documents to maintain consistency. In fact, “angootha chhap”, meaning thumbprint,is a derogatory Hindi phrase for an illiterate person.
While he may not have registered the indignity of the situation, his daughter felt it keenly, and for the first time wondered how much longer he must endure it. Perhaps he thought the same, for he died not long afterwards.
Absent the pandemic, I might have had a chance to visit him and pay him my respects. Even if he didn’t recognise me, it could have been a form of closure. More importantly, I could have supported my friend through more than text messages.
Amid all her responsibilities, she still asks me how I am doing on the frontline. I tell her that her frontline duty has been longer, harder, and deeply personal. With one parent gone, she continues to care unstintingly for the other. There is no recognition and no respite. There are no awards for the selflessness of these everyday heroes. Quiet and industrious, they are an example to us all, which is why we must shine a light on them while reflecting on the debt of gratitude that society owes them.