The devilry of nearness: thoughts on caregiving

Rohit Brijnath has written this very moving piece about dealing with parents’ mortality – many good points elegantly made, well worth reading and rereading.

I want to rant about something related, though. At risk of sounding callous, I can only take so much of people going on about the tribulations of being thousands/hundreds of miles from their old parents, nervously anticipating phone calls with bad news, not being able to reach on time, not getting the closure they needed, etc etc etc etc. I’m sure those situations – the devilry of distance, as RB puts it – are very painful in their own ways (and there are many perfectly understandable reasons why someone might be living far away from their family) – but all the hand-wringing can feel a bit dramatic, and even distasteful, to anyone with firsthand experience of something that’s much more stressful, debilitating and life-consuming: looking after an ailing family member on a day-by-day basis. If you haven’t lived with that situation, the profoundest powers of empathy won't help you imagine what it’s like.

Possibly this is a misplaced sense of superiority, but it has many sources. Mainly, watching my mother come close to ruining her own health a few years ago as she looked after my nani round the clock (and simultaneously put up with meaningless long-distance counsel, and even some bullying, from people who knew little or nothing about the ground realities surrounding a Stage 4 cancer patient whose body refused to either recover or give way). Or hearing other stories – involving friends and acquaintances – about the sibling who becomes the default caregiver because he/she is the one who’s physically present, while the ones settled far away make sympathetic noises on the phone in between planning their lengthy vacations.

Or my own experience, in the last two years, of being constantly on call for my other grandmother through a long line of emergency-room and ICU admissions: the madness of handling things singlehandedly in hospitals, dealing with apathetic or inefficient doctors, nurses, dieticians and attendants (those Catch-22 passages about Yossarian never seeing the same doctor twice? Kitchen-sink realism, not satire); going to bed at night with part of one’s mind always set to “I’m probably going to be woken up at 4 AM for another little ambulance adventure” mode; keeping the phone on vibrate and clutched in one's hand, even while watching a film in a hall; being unable to make travel plans; feeling, on bad days, decades older than one’s age (while also having a mortal terror of falling ill oneself, even if it’s just a bad back or a fever that lasts 2-3 days); being too mentally drained to get any serious writing done, including during a time when some important chapters of my new book were being written.

This sounds like a lot of complaining, and it is, so I should add that there are things about this period that have brought me satisfaction: among them, the knowledge that I could be around for, and be of  use to, people who have been an important part of my life; that when I think of my grandmothers in the years ahead, the memories will be real, vital ones, not distant, abstract ones of a bedridden shell of an old woman glimpsed for a few hours every year or two. And, speaking as a writer, the sense that a few valuable life experiences have been added to one's kitbag, things that one may or may not be able to draw on in the years ahead. But during the really bad days, of which there have been many, I have been selfish enough to wish that I was the one living thousands of miles away, dealing with nothing much more than glum updates on the phone + the stabbing pain, regret and frantic flight-booking that came with the last of those updates.  

[Related piece: a column about hospitals that I wrote for Business Standard]