On ageing, geriatric care, and why Indian families need to talk about this more

My grandmother hobbles to the telephone in the hall. She holds a tattered piece of paper steadily and wakes up her newly appointed caretaker from her afternoon nap. ‘Dial this number.’, she instructs her and sits on the sofa, rubbing her palms together restlessly. This is her daily ritual afternoon ritual – calling, complaining, crying. She speaks to her sons and daughters in law, lamenting her fate, reminding them that she is very much healthy so could they please come and rescue her from the forces of evil daughter-in-law – my mother-  and her even worse daughters? Can they please grant her release from the brutal disciplining & confiscations of salt and additive loaded flavour drinks that have been so lovingly gifted to her? Can they please take her to a place where she can be permitted to eat what she wants and do as she likes, no matter how it affects her?

I didn’t know my grandmother very well as a child and teenager. Growing up in Dubai while she lived in Bangalore, I saw her once a year. I had heard the stories though, of how feisty and domineering she could be; a strong woman that even the men in the family feared. Perpetually suspicious, desperate to control the lives of her children and their wives, ever-ready to pick a fight with anyone who challenged her – my grandmother is a force to reckon with.

Whenever I visited Bangalore during summer holidays, she would call me quietly to the puja room – where she kept trunks and boxes filled with precious items like imported dry fruits, brass and steel vessels, tattered spiritual books – and shove a wad of notes in one hand and Snickers or Mars bars in the other, the same chocolates that my father had bought for her from Dubai. I still remember the shape of the large silver key she wielded, kept tucked close to her in a little pouch in her paavadai, extracted artfully like a spy to unlock the wooden doors.

It was after the birth of my daughter that I got a little closer to her. I saw a new side to her as she took delight in watching her great grandchild grow, evoking concern over how skinny she was, giving me advice on what to feed her to fatten her up, expressing pride at her intelligence and compassion.

She has always been active and in fact, difficult to catch up with. On our walks to temples, she was always ahead, briskly walking with purpose. She would collect the thick skin of milk fat for days in a small container and hand churn it to make ghee, draw water from the well in our ancestral home, wash her sari, in-skirt and blouse herself and climb up to the terrace and dry it. There was a buzzing restlessness within her. She never napped and constantly bustled about, ensuring she knew what everyone was up to, interfering where she needed to establish her position as the matriarch.

But now, things are changing. My grandmother has crossed ninety and the old age problems that she was certain would never come her way, are cropping up and diminishing her energy. Her vitality is slipping away from her fingers as she finds herself catching her breath after climbing one flight of stairs. She struggles to accept that her sturdy body is slowing down. With heart problems, onset of dementia, and the slow loss of bowel control, she needs help and supervision that she refuses to accept. All her favourite accompaniments to meals are being cut back – full fat yoghurt that aggravates her cough, pickle that spikes her blood pressure, endless cups of Horlicks in milk that contain excessive sugar and preservatives with the potential to throw her vitals offbeat.

My grandmother’s daily routine revolves around timely meals and medication, both working in tandem to keep her erratic blood pressure and sleep patterns in check. Her days are reduced to hours of waiting till the next meal, for sleep, a phone call from someone to ask her how she is, to light the lamp in the puja room at 6 pm, to fill the remaining hours with watching television serials and listening to devotional songs that celebrate Lord Vishnu. Sometimes when I walk past her room, I see her lying down and staring at the ceiling, a vacant and helpless look. When she complains to the doctors about not being able to sleep, they tell her coldly that this suffering is normal , nothing but a symptom of old age.

It does not help that her children fear having difficult conversations amongst themselves, and with their mother, regarding responsibilities and decision-making – short and long term.

Geriatric care is exhausting, and the Indian culture has an ingrained aversion to the subject. It is accepted that daughters-in-law will do the tasks of dishing fresh and healthy meals, cleaning messy bathrooms and washing soiled clothes, listening to accusations and constant requests for tea. There is a generation of old people who insist that family takes care of them and are offended when caretakers are hired. They view them as subservient and unworthy of cooking for them or helping them wash up. Call it a caste or class issue – it is nearly impossible to challenge this notion, especially because it is too late as they have been enabled for decades.

Meanwhile, the not-so-young women battling their own health issues such as joint pain or diabetes get emotionally and physically tangled in this cycle of caregiving for their parents or in-laws; their lives draining slowly to sustain the health of the elderly. They continue to labour on; some hiding their resentment, others vocalizing it, but in the end all of them being in the same boat as the person they are caring for – there is little choice.

We are accustomed to hearing the stories of destitute folks who were dumped on roadsides – either because they were too much to handle or they were no longer needed after they wrote their property off to their children. But what of the other stories where families do everything they can, breaking themselves apart because they cannot balance the needs of the elderly along with their daily lives? What of the disagreements wedged between husbands and wives and between siblings because of old, difficult parents?

A 2018 survey conducted by Agewell Research and Advocacy Centre for the United Nations concluded that 62% of elderly in India lack long-term, palliative care. The study linked this trend with the rise of nuclear familiesIndia, a country that reveres the elderly as part of its value system, is doing a terrible job (if they are doing anything at all) of creating organized infrastructure for geriatric care. There is no compassion or thought put into translating this reverence into comfort and security. The current options are nursing homes where only basic medical care is administered, hospitalization for extreme cases, private agencies that offer caretakers but are inaccessible to middle- and lower-class families because of the costs, idyllic and premium retirement homes or gated communities that only the privileged can afford. We see retirement plan advertisements that emphasize financial security but what of wellbeing?

Co-dependence between children and parents is a deeply problematic dynamic that still exists even the most progressive of Indian families. We like to scorn at white folks who kick their kids out to fend for themselves, and the boundaries they establish. We believe that our parents are obliged to pay for our weddings, hand over their hard-earned savings to us, to choose our life partners so we can blame them if things go wrong, to bail us out of trouble. It’s a two-way street – You take care of me for as long as needed; I’ll make sure you don’t wind up at some old age home. Each party hangs the noose of obligation, tightening it to serve themselves, till eventually the line between love and duty is blurred.

In Atul Gawande’s book ‘Being Mortal’, he explores the idea of what matters to us as we age, and how our sense of self and purpose is defined by the choices we’d like to have and make for ourselves. He writes about his father’s medical condition and the conundrums of choosing between buying time and risky surgical procedures. It is also interesting to see that even a country like America, that offers a variety of health care options for the elderly that are emotionally and physically empowering, is still way behind in devoting attention to geriatric care. One of the statements he makes is especially relevant to Indian children, ‘“Your chances of avoiding the nursing home are directly related to the number of children you have.”

I wonder if it is this reluctance to talk about aging till it is too late that fuels the Indian government’s apathy towards care systems for the elderly of all classes. It serves as another notch on India’s hypocrisy belt – respect your parents or grandparents enough to not disagree with them but don’t address the need for policies and systems that can enhance their quality of living in their last years. What is the point of progress that increases longevity when there is no assurance of how we will be taken care of when we’re too old to manage on our own? How is providing savings and insurance schemes for seniors, subsidized rates for train tickets and medical tests enough?

My grandmother is extremely lucky. Her sons are prepared to go the extra mile to make sure she is comfortable and to listen to her. Apart from that she is financially independent with her pension and rental income. She gets freshly cooked food for every single meal and is never served leftovers. A proficient full-time caretaker has been appointed to help her with medication, monitor her vitals, and help her with daily tasks that she struggles with. She has the freedom to do what she can independently while seeking help for the tasks she fumbles with. Unfortunately, the restrictions on her diet and her own memory problems bring out the worst in her, making it difficult for those around her to manage her tantrums. With time, the challenges will grow and it will be up to her children to ease the pain of aging for both her and respective caregivers by jointly planning and communicating.

I have a cousin abroad who is already planning for her return to India in a couple of years, to be there for her mother and in-laws.. My maid’s mother-in-law was an emotionally disturbed addict who neglected her husband leaving my maid to spend equal time caring for her father-in-law and her own children. A friend tells me sadly of how despite having two siblings, he has been the only one spending for his father’s cancer treatment for nearly four years. Another friend laughs about how her brother refused to take their mother home for a weekend because ‘he had guests’. The stories are everywhere.

Aging is a form of penance, where we become baggage to be lugged around, weighed, and packed at the whims of children, doctors, nurses. Our bodies and minds will crumble at varying rates, we become prisoners of time waiting for the great escape while secretly also fearing it.

I was reading about this geriatric care training centre that hires its staff based on their answer to one question, “Do you believe that old people should be treated like children?”. Those who answer ‘yes’ are not recruited. Sometimes I watch my grandmother being a rebel, snooping around, trying to find the salt bottle or sneak in a mosambi. She is childlike and I realize the challenge in what this agency is trying to do – to value the elderly as individuals with spirit and not to define them by their ailments. It is, by no means, an easy feat.

The UN estimates that by the year 2050, 20% of India’s population will be above 60. If I am around, I will be in this list. Will India be prepared to provide holistic and affordable care options for all? Can we work on more solutions that involve old people in community participation, instead of being dismissive of the needs that go beyond basic food, security, and health? Will health insurance providers re-design their schemes to extend quality care in the form of hospice services at home instead of forced hospitalization

It feels like there is far too long a way to go. The journey is complicated by the fact that each of these questions invokes a hundred more.

Perhaps where we can begin is by talking about it all– growing old, sicknesses, wills, organ donation, roles of family members, and finally – dying.

(Image credit – Unsplash)

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