The Eternal Loneliness of Being a Caregiver to Someone Suffering from a Mental Disease


The Eternal Loneliness of Being a Caregiver to Someone Suffering from a Mental Disease

Illustration: Shruti Yatam


The most vivid memories that I have of my gentle grandfather is from his last few years. When you live in a multi-generational family such as mine watching your grandparents wither away becomes a part of growing up. My grandfather’s story was no different: We laughed at his antics – using a comb to shave, slathering antacid gel on his cheeks instead of shaving cream or, addressing his wife as “Ustaad-ji”. It never occurred to us that he was in fact, slipping deeper and deeper into some sort of a mental disorder or that he needed professional care. “It is just old age,” everyone would shrug, sigh, and carry on with their lives, instead.

As his conditioned worsened, his primary caregiver – my grandmother – began to slowly lose her patience. She would hurl abuses at him in sheer frustration, even when he sat there totally nonplussed. This only added to her anguish. But even then, not for a moment, did my grandmother allow anyone else to cook for my grandpa, feed him, or even iron his clothes. You could tell that it was killing her to watch her husband lose his beautiful mind, one memory at a time. And yet, she soldiered on; at the cost of her own health, happiness, and sanity. 

My grandmother, like the rest of her generation, and perhaps most married women across the country, believed that it was her moral and social responsibility to tend to her husband. It never seemed out of the ordinary for us. We have after all, all grown up in houses where we’ve seen women transition into four distinct identities: wife, mother, grandmother, and caregiver. We’ve also grown up in houses where mental disorders are given as much attention as stomach bugs that refuse to go.

According to a recent WHO report, India is the most depressed country in the world. The study further states that though “there are effective measures and treatments, there is an extreme shortage of mental health workers like psychologists, psychiatrists, and doctors”. In 2014, it calculates that it was low as “’one in 100,000 people”. That might explain why in an average middle-class home, the mother, wife, son or daughter becomes the default nurse, therapist, counsellor, ayah, mentor, psychiatrist, and physiotherapist. 

You could tell that it was killing her to watch her husband lose his beautiful mind, one memory at a time.

Years, after my grandfather’s battle with dementia, I find myself playing a secondary caregiver to close family members struggling with a range of mental health issues. The thing about mental disorders – whether it is dementia, depression, or anxiety – is that they are incredibly lonely diseases. They thrive on alienating the patient from the outside world and when you’re someone who has to devote all your waking hours to such a patient, you tend to get cut off from your own world as well.   

At this point, there are more people facing mental health challenges in India than we’d like to believe. The profile of the patient and the nature of the ailment may change but what remains constant, is the burden of the caregiver. I watch my cousin sincerely caring for her teenage daughter who has been clinically depressed since she was a child, a husband who is losing his battle against the demons in his head, and simultaneously hold on to her job and her sanity. I watch my mother-in-law take on the role of a caregiver for my father-in-law, who is in the advanced stages of dementia. She is 75; he is 87. She hates every minute of her so-called “wifely duties” that involve bathing, cleaning, and feeding him. My father-in-law follows her around like a little child, and gets terrified if she steps out, even for a minute. She curses him, curses her luck but still rises unfailingly to the call of duty, every day. 

My mother-in-law has frequent meltdowns, acute anxiety attacks and suffers from paranoia. The toll that it takes on her, my cousin, or the toll it possibly took on my grandmother’s mental health, is worrying. And, yet as the primary caregiver of their children or husbands, they don’t have the luxury of calling it quits. At the end of the day, there is no room for personal detachment. A hired ayah or a therapist has the option of walking out after duty hours or quit if the patient gets unreasonable or violent. But when you are a parent, a spouse, or a daughter, you cannot shut yourself off. Caring for them isn’t just a duty for you; it becomes a fabric of your existence. So you absorb everything – the abuses, the occasional violence, the unreasonable demands – and still remain by their side, effectively allowing their illness to take over your own life. Essentially you forget to look out for yourself. 

A New York Times essay titled “Love and Burnout. Caregivers, Too, Need Care” points to research that “the human immune system can be weakened by stress and strain for up to three years after caregiving ends. As a result, caregivers can be more prone to having serious illnesses. Yet they rarely complain.” 

“Caregivers think that it’s shameful or wrong to ask for help,” said Mindi Golden, associate professor in communication studies at San Francisco State University.

“When you come right down to it, you’re in it alone, and there’s nothing that anybody can do for you…. it’s lonely.”

Perhaps, one of the most heartbreaking accounts of a caregiver’s loneliness came from former First Lady, Nancy Reagan, who lost her husband, the 40th President of the country Ronald Reagan, to Alzheimer’s. “It really is the long, long goodbye,” she said in a poignant interview. “When you come right down to it, you’re in it alone, and there’s nothing that anybody can do for you…. it’s lonely.”

Mrs Regan’s words reminded me about my grandma, who never turned to anyone for help. She believed that her husband was her responsibility alone and she was alone in this fight. But today, surrounded by so many who suffer from mental ailments, I realise that the way forward is to build a support system.  

The other day, I was catching up with friends, who in their late 30s, are a wonderful parents and successful food writers. We have a lot in common, and mostly talk about new restaurants and the weather. That day, we veered a bit and spoke about our role as caregivers to relatives suffering from mental disorders. We spent our time articulating the infinite struggles of being a caregiver – problems that someone distanced from caregiving would have trouble relating with. We discussed the challenges of dealing with a day and night nurse, the early signs of dementia, and the unending onslaught of medication. For once, I did not feel any guilt for complaining about caring about our loved ones. 

I realised that it is essential to remind the caregivers that they need care. And though my husband and I are always around, it’s important to tell my mother-in-law time and again that she is not alone in her fight. And that is okay to complain.