During the final weeks of her life, all spent in an Indian hospital, my grandmother deteriorated peacefully, and gracefully, until she slipped into a coma and breathed her last. My 10-year-old self remembers a thing or two about this time.
The hospital’s egg curry, a much-loved north Indian dish, was amazing. The tiny cakes with real butter icing that defied all dietary guidelines weren’t bad either so my cousins and I, gathered in the small room, took turns selecting the menu and outwitting the nurses, who sweetly played along, praising the voracious appetite of our fading grandma. Enveloped in grief at their mother’s impending death, the adults couldn’t bear to look at the food – if our mirth seemed out of place, they never said so.
As we wolfed down the food and settled down to another game of Scrabble, my diminutive grandma would open her eyes to peer at us. We often sat within her line of sight and sometimes when she wasn’t tired, she would lift her hand in blessing. She didn’t have any last-minute advice for us neither did she say goodbye. She never cried and she never complained. In fact, she barely spoke but she smiled when possible. The kind of quiet, contented smile that said she was at peace with life even though she was dying far too young. I remember thinking how much she loved her grandchildren – the feeling was so powerful and visceral that it never struck me there could be suffering behind it.
But my grandmother’s skin had turned bright yellow and explanations were called for.
“Why is she yellow?”
“They say it’s jaundice,” the adults replied.
“Why does she have a drip?”
“The doctor ordered it.”
“Why is she sleepy?”
“She is tired.”
“Is she hungry?”
“No.”
“Then, can we have the egg curry?”
There were no doctors in our family and there was no sophisticated understanding of the process of illness and dying. Since the adults didn’t know much, there were no customised, careful explanations for the children. In fact, as loss stared us in the face, there was very little to say. But what we lacked in words we made up for in another way – we stuck together to observe the ritual of dying.
Alongside our parents, we watched our beloved grandmother sleep, awake, groan and smile. We watched her totter to the bathroom and then confined to her bed. We watched her eat half her food and then none at all. We learnt to scrutinise the doctors’ expressions and understand that our sorrow wasn’t their fault. We saw how hard the nurses worked and came to fill in their gaps without rancour.
Thus it was through incidental observations that as children we became witness to life drawing to a close. It was a gradual and real schooling so that when our grandmother finally died, we were sad but neither inconsolable nor traumatised. Years later, as grown-ups, we find ourselves helping our own children navigate illness and loss – as the cycle continues, we summon our own memories about the importance of just having been at the bedside.
I found myself thinking of all this when I looked after an elderly patient who came for an elective procedure which went horribly wrong. As organ after organ failed, my patient retained an uncommon spirit of optimism, expressing hope that he would get home to see his grandchildren whom he greatly missed.
In the week he became irretrievably ill, his daughter came up to me, wringing her hands.
“What should I do about the kids?”
I waited, sensing there was more. As it turned out, her children, 8 and 13, had not been in at all. She had protected them from his temporary problems and when his condition took another downturn, she was grateful that they were occupied at school. She maintained an anxious vigil over him but kept hoping for a day to come when her father was well enough to greet his grandchildren like his old self.
“What are you afraid of?” I gently asked.
“That they’ll have lifelong nightmares. Isn’t it better if they remember him being well?”
I felt a stab of regret. It’s true that her father looked pale and gaunt but the warmth in his eyes was unmistakeable. And he could still speak, telling me he didn’t have long and thanking me for my care. He didn’t want to burden his daughter but I longed to fulfil his final desire without compounding her dilemma.
“What would you do if you were me?” she tearfully asked.
There, she had asked the question I had dreaded. I believed that although there had been better opportunities, a visit to their grandfather’s bedside would still be meaningful and provide an opening to a later unavoidable conversation with the children about illness and mortality. I thought the children were old enough to be left confused by the turn of events and wondered what views they might form of what happened in a hospital. I feared that their mother, coping with bereavement, might struggle to find reasonable explanations later. And I fretted that the emerging disagreement in the family over the children would test adult relationships. So I told her sincerely, “I would find it heartbreaking but I’d try to bring them in.”
When it comes to children visiting sick or dying relatives in hospital, every family decides differently. Granted, hospitals aren’t designed for the ease of young (or old) visitors. There is a maddening lack of space, chair and amenities and visitors can feel conscious of getting in the way. It’s unlikely that these deficiencies will disappear anytime soon though people do find their way around them.
Studies show that childhood bereavement alone is unlikely to be related to adult outcomes. Rather, factors such as parental support, open communication, age-appropriate explanation and the presence of other adverse social and psychological events may have more impact than the fact of the death.
In hospitals and nursing homes, there is a stark lack of young visitors to the bedsides of their elderly relatives. When children do visit, they are nearly always parked on a device, making real engagement impossible. We seem happy to let our children Google illness, just not let them near it. But making illness and mortality invisible to our children has unexpected consequences. GPs report meeting adults in their 40s who fall apart when a parent falls ill because they have never encountered illness up close and don’t know how to deal with their own emotions, let alone their children’s.
There is an epidemic of loneliness among our elderly population as they trudge from residential care to hospital and back again. For staff, the loneliness is in plain sight – every doctor has met a patient who begs to stay an extra day because “it’s nice here, people talk to me.”
Addressing loneliness is hard when there are a dozen other priorities even though a visit from a loved one is worth a dozen pills. And the comfort of strangers is no match for the consolation of family, so every day we convince and cajole relatives to visit, until it becomes a job as routine as checking bloods.
Patients cheer up when anyone visits but when children come they have an unfailing effect on lifting the mood and alleviating the loneliness of patients. Occasionally, I’ve needed to take one of my children on a weekend ward-round and felt bad about it. But my misgivings have melted at the sheer delight of patients. Nothing banishes the dreariness of being in hospital than an innocent banter with a child. The food tastes nicer, the pain seems bearable and life itself seems more hopeful. Indeed, children inject a kind of optimism and happiness in patients that it’s hard to replicate. Countless patients have thanked my children, saying, “You remind me of my grandchildren,” prompting one green medical student to ask me, “Then where are their grandchildren?”
Unfortunately, for my patient, time ran out and his grandchildren didn’t come in. But the encounter was another reminder of the therapeutic benefit of young visitors to the bedside.
We cannot forever shield our children from the realities of life. It’s normal to feel apprehensive but there are steps parents can take to prepare everyone for a visit. We need to protect our children but we also need to spare a thought for our elderly who have often given years to building a bond with our young only to be deprived of it when they most need it. Being sick is hard enough, they don’t need to be lonely too.