A difficult story to write: A caregiver’s tale

This post is about two women I read about in the newspapers, Sangeetha and Baby. The first time I read about them was in December 2010, while scanning newspapers for caregiver stories. I read about them again the same way, in February 2011. For the last few weeks, I’ve been trying to make myself write this post about them. My way of honoring them. Because writing is my way of doing things.

Here is what I read in December, the first installment of the story.

The story starts in a simple way: Baby, a poor, widowed woman wanted her daughter Sangeetha to get educated, and slogging for years as a laborer to earn money, often ignoring her pains and other health problems.  Daughter Sangeetha studied hard, completed a bachelor’s degree, and then did her post-graduate diploma in computer applications.

Let us pause for a moment to imagine this: Baby, lifting heavy loads of stone, working long hours, and her daughter, struggling to study. I think it would be reasonable to assume that Sangeetha would be a first learner in the family, and every achievement of hers becomes more significant given her circumstances. She must have shown courage and intelligence. Presumably she did not fritter away her energies in the sort of fun and games that most of her peers would be doing; her mother worked hard, and so did she. They shared a dream, that of Sangeetha being educated.

To go on with the facts of the story, as reported: Baby’s severe pains reached a state when they could not be neglected. MRIs were done. Investigations conducted. Baby had developed Parkinson’s. Her mix of problems soon included dementia. Sangeetha, her education complete, had been trying to earn money on the side while attending coaching classes so that she could get a government job. But with Baby now having fits and falling, Sangeetha had to shift her role and become a fulltime caregiver.

I remember thinking, as I read this, that O’Henry would be proud of how life imitates fiction; this was a real-life Gift of the Magi story. Instead of working to get the job and complete her mother’s dream, Sangeetha gave up the possibility of a job because she could not leave her mother alone for even ten minutes. As the round-the-clock caregiver, Sangeetha lived in a small thatched hut and cleaned and fed her mother and watched her worsen. There was no money, no food, no medicine, except the small amounts that came thanks to the charity of some people and organizations. There was no time to go out and earn anything. There was no energy.  There were only bucketfuls of soiled clothes and caregiving work that never ended, and Sangeetha did it without grumbling. Day after day, month after month, year after year.

“A gem,” is how a neighbour described Sangeetha.

People often talk of our duty to care, how we must do all we can for our loved ones when they need us. How we should do so to the exclusion of all else. I suspect that even the most purist of such text-book definitions of love and care and duty would not find Sangeetha lacking. She could have done no better. Indeed, a worthy child of a mother who had shown such selfless love herself.

The newspaper report appeared in Express Buzz on November 30, 2010. (Can society help her?) Usually, when such reports appear, donations start coming and some people step out and do things. CSR cells in some companies adopt the family, or pay for specialists. Others, sure that some other people would have helped, watch for the next installment of news.

I admit I was in category 2. I assumed things would happen, and Sangeetha would get the relief she so sorely needed. I felt deeply for her, but I did nothing about it. This was a different city, anyway, but I’m not sure how much I’d have done if it were in my city. Maybe donated something, talked to people about it. Made a blog post, added a Facebook post on my wall…  😦

I next heard of Sangeetha and Baby in February 2011, through another Express Buzz article. Yes, the previous newspaper article had helped bring in money, clothes, food.  Some concerned people began thinking of how Sangeetha could be given some respite from the work she’d been doing 24 hours a day for years.

But then something happened.

The mother died.

Death, of course, is inevitable, and not just for persons who are unwell. But it always comes as a shock. To Sangeetha, whose life had revolved around her mother for years, to this young girl who had surrendered all other identities to that of being a caregiver, who had no company, no life, beyond what caregiving gave, the death must have been a really horrible jolt. I think of her sitting there, looking at her dead mother. Did she have someone she knew she could call and get help from? Someone with a shoulder that could take tears? Did she have some future that was not empty, that held hope, love, whatever? Perhaps not…

Because Sangeetha, alone with her mother’s body, hanged herself. (The report is here: The Burden of Care)

A suicide makes people squirm, and we cope with discomfort by distancing ourselves. The person was not someone we knew. The person was not like us. The person was weak, misguided, negative, lacked courage to face life. Rationalizations to cope with discomfort.

Surely, though, Sangeetha was not weak–her entire life is a study of courage, determination, love. Anyone who has cared for a bedridden person for more than a few weeks would know it is not for wimps. Sangeetha handled this alone, while also facing severe financial problems. For years. Not weeks, not months, but years.

But she was seeing her mother die in spite of all the care. Her only purpose of life was caring for a mother who would progressively get worse. That someone in her situation may suffer from depression and respond in an extreme way to her mother’s death seems obvious in hindsight. Obvious even to a newspaper reader, if someone paused to think about her.

What did we do about it? Did we do enough? In time? Did we make sure she did not feel alone?

We always hear things about what caregivers should do–for love, for duty, for just doing what needs to be done. When will we hear about what others should do for caregivers?

A month ago, I was conducting a session describing the challenges faced by home caregivers of dementia patients; the audience was mainly development workers and volunteers planning to work in the dementia care field. I discussed how caregivers need a supportive environment so that they could focus on providing care effectively and not get stressed or isolated. When, to sensitize the audience, I used examples of how people inadvertently criticize and pressurize home caregivers, a man in the audience objected to my talk. He claimed I was “blaming” people, and stated that caregivers should do what they had to do without bothering about what others said, because looking after their loved ones was the right thing to do. I pointed out that volunteers (like the audience in the room) could spread awareness of dementia and of caregiving so that people did not hurt caregivers out of ignorance, and wasn’t that what volunteers and development workers aimed at–supporting people? But this man was convinced that discussing what others said to caregivers was irrelevant because caregivers should not bother about criticism or getting isolated.

I’m sure the man would have “approved” of Sangeetha, because she did all she had to do out of love and duty, and was clearly ready to be alone. So alone that she saw no reason to continue after her care receiver died.

Sangeetha did her duty; but what about us? Society is not an amorphous mass; it is each one of us. If we pride ourselves as a society with a culture where people are cared for, we also have a duty to help that happen. To support people like Sangeetha. And if she suffers for lack of support, we are all culpable.

Okay, so maybe we cannot help a distant Sangeetha in Thiruvananthapuram, but what about the people around us who face similar problems? In our family, in our neighborhood, amongst our employees and employers and colleagues? Have we thought of what we can do for them? Are we doing enough in our own circles for the Sangeethas handling inhuman loads of care in inhuman surroundings for inhuman stretches of time while facing inhuman isolation? Do we want people to reach the breaking point before we acknowledge and support them? Even if we cannot make major changes to help them, are we making at least some small gestures that could add up when summed across many of us?

When did we last hug a caregiver? Or take a caregiver out for coffee, or give a caregiver respite for a couple of hours, less than a glued-to-TV cricket match’s duration. Have we managed to open our hearts and listen to a caregiver talk without wriggling uncomfortably and telling them to “be positive” and “just do your duty” and “don’t you love your mother” and “why expect anything from others, ignore them”?

What more can I say? It has taken me weeks to write this blog….Even thinking of Sangeetha makes me shudder, but I mainly handle things by writing, and that’s what I have done.

I think a lot needs to be done. Small gestures, made by individuals. Big actions, taken by persons who have the ideas and energy to do more, who have resources and contacts. I think the time to act is now, before we read another such story. What do you say?

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

6 Responses to A difficult story to write: A caregiver’s tale

  1. Anitha says:

    Heart-rending, frightening and so true.

    A reminder to reach out to the caregivers I do know.

  2. pramada says:

    thanks for posting this swapna. very powerful and its true that we often only have platitudes to offer caregivers, since anything else would require a lot more effort. sad that sangeetha’s story had to end this way.

  3. indrani says:

    This is a real eye opener and so heart-wrenching. Caregivers ought to get all the support they can get so they have the strength to pursue their mission. Even nursing staff and paramedics at ER’s or critical care centers, or hospitals work in shifts, not 24 hours a day! Thanks for posting.

  4. janet says:

    That you have written this account and posted it for those of us who don’t see reports of the life of caregivers is a big step. Thank you Swapna.

  5. swati says:

    Too shocking Swapna.A real eye opener. sangeetha’s fate should not be that of any other care giver. It is time we woke up and shared the burden of care

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