caregiving | Jaya's blog

“Keep Sharp” by Dr Sanjay Gupta

Dr SanjayGupta’s new book, Keep Sharp, is an absorbing read about how to keep oneself fit and healthy, especially our brains. He shares the widely held belief that grey matter stops developing in early adulthood. But now new theories say that that is no longer true. The brain can remain sharp if encouraged to do so by adopting better lifestyle behaviour such as regular exercise, eating home cooked food ( preferably slow cooked and less reliance on takeaways), meditating, reading more, less of digital consumption and definitely hydrating more with regular water than sugar-based drinks. His concern stems from the growing number of people who are diagnosed with dementia, a condition for which no known cure exists as of now, but cannot be ruled out in the near future given the rate at which medical science is advancing. Dr Gupta, who has travelled widely as a reporter with the CNN and continues to practice as a brain surgeon recognises the urgent need to appeal to people while they are healthy to take charge of their lives. He is very keen that folks wrought a change in their life now with the hope that it will mean a better old age. He also focuses on caregivers or as they are defined as now, ” invisible second patients” and the need to understand the stress that they imbibe. Caregiver burnout is very real and hence, self-care is critical. Perhaps it’s design in the book is unintentional but the message that comes across is that devastating impact of caregiving is akin to being in a war zone. But he states often enough in the book that “I’ve noted that the people who live better– and longer — are the ones who hold on to hope.”

I like the way he has likened caregivers to “invisible second patients”. Apparently it is parlance commonly used in the medical fraternity. It has not been coined by him. But at least he has made it visible to the lay reader and I think by doing so, it has been a phenomenal act upon his part. It is almost cathartic for a medical professional to recognise how stressful caregiving can be.

Having been a caregiver myself for many years, it’s heartening to read an experienced doctor confirm many of the practices that one has unwittingly woven as regular practice into one’s life. For example, eating a balanced diet, preferring slow cooked homefood to commercial food, no snacking, water vs juices/sodas, daily exercise, reading etc. Perhaps it happened by witnessing the slow degeneration of a healthy individual. A large part of the cargiving is taken up by creating the right meals and exercise. So basic. As he constantly emphasises in his book that these are some aspects of one’s cargiving that should be non-negotiable. Everyone is busy but not busy enough to fit in some self-care on a daily basis. It helps in the long run as he can affirm from the patients he meets or the autopsies he has conducted and reviewed the state of brains.

Dr Gupta has created as 12-week brain training programme that may sound easy or tough depending on the nature of one’s current lifestyle. But it is doable. Worth exploring.

Read it.

3 February 2021

Maya Shanbhag Lang’s “What We Carry”

02 01 , 2021 No Comments

Maya Shanbag Lang’s memoir What We Carry is an extraordinarily powerful memoir about looking after her mother. Dr Shanbag, Maya’s mother, was a doctor and a fiercely independent woman who always was in charge of her life. She was a very respected doctor in her professional circles. Her outstanding characteristic was that she lived life on her own terms. So much so, she decided when she would quit her marriage or take on a gruelling job at a hospital as it ensured her a pension. Maya describes her mother as being miserly with her money and scrimping and saving all the time. It is not as if Maya and her brother were in want of anything, their mother ensured that her children were well provided for. But it is when her mother begins to show signs of forgetfulness, lose alarming amounts of weight in a very short period of time, have mood swings etc that her children decide to have her medically evaluated. At the consultant’s room in a particularly lucid moment, Dr Shanbhag surprises everyone by acknowledging her dementia. Yet, as the doctor advises that the decline will happen and their mother will no longer able to live alone. She needs supervision and caregiving. This is when Maya decides to step in and take care of her mother. She moves her lock, stock and barrel into her own home. She merely informs her husband via a text message that she is bringing her mother home to live with them. He is so wonderfully accepting of his wife’s decision. While juggling her relatively new daughter, now her mother and her own professional commitments as a writer, Maya has her hands more than full. This memoir is about that one intense year of trying to manage everything singlehandedly and be on top of things. Yet at the same time Maya is perceptive enough to recognise the different stages of caregiving, the spiralling downwards of the patient and the transformation it wrought upon the entire family unit with a heartwarming scene of even the young granddaughter recognising her grandmother’s frailty and holding her hand. While combing through her mother’s papers, Maya discovers that her mother had the astute foresight to invest in an expensive insurance scheme that permitted her coverage indefinitely in one of the plushest old age homes. Maya was astonished and relieved to discover this fact but she reveals this with such grace and dignity in the memoir. Moving her mother to the home is done out of pure love as Maya chooses a place that is not too far from her own home. It also has all the amenities required for old age care but does not traumatise the patient with its forbidding interiors. On the contrary, it is warm and welcoming. Her mother takes to it happily.

You don’t have to be a caregiver yourself to appreciate this gem of a book. But if you are, it is overwhelming to read for its perceptiveness — the kindness it requires to look after a loved one especially a parent, the sharing of one’s grief at witnessing the deterioration of the person as they disappear into a fog from which there is no coming back, sharing also the frustration that relentless caregiving brings with it and most certainly the exhaustion that is never ending. Maya discovers her stress busting moments are frequenting the gym. It helps at times for primary caregivers to look the other way and indulge in a bit of self-presevation and self-care.

As Maya discovers caregiving for the two bookends of life can be brutal but it has its rewarding moments too. It is a very moving account of three generations of her family. It is played out in innumerable homes every day. It is the circle of life.

Read it. Gift it.

23 November 2020

Tishani Doshi’s “Small Days and Nights”

05 06 , 2019 No Comments

I had been prepared for ugliness because that’s what grows in India, sprouts and flourishes like the hair on a dead person. But the space in which you from adult to child, that leaf-thin whiplash, that I had not expected.

…

I do not need the freedom I imagine I need.

Dancer, poet, writer and literary critic Tishani Doshi’s second novel Small Days and Nights is about thirty-something Grace who is half-Indian, half-Italian. Upon her mother’s death she discovers she has a younger sister Lucia. Lucia has Down’s syndrome which their Italian father insists on referring to as “Mongoloid”. Grace decides to take charge of her life and one of her first decisions is to move her sister home. This despite protests from Lucia’s Teacher at the home. The sisters move to a home their mother had bought many years earlier for a song. Now it is considered to be prime property. Ten acres of land with a detached house by the sea. Grace relies upon a young girl from the village called Mallika to help her manage the house and Lucia and the many stray dogs they seem to have become responsible for. This is a domestic scene that is quietly idyllic. It is a feminist utopia with no men in the household. Although men from the village come to Grace regularly seeking funds and offering unsolicited advice. The sisters also get unwelcome visitors like hostile property brokers.

Small Days and Nights focuses on a tiny slice of domesticity, a world that is usually invisible to most, at least in literature but is all around us. There is something reassuring to know that women’s fiction can make matters of “little” importance such as “caregiving”. Even the frustration that Grace feels for Lucia one day and vents it upon her younger sister by becoming physically violent is understandable to those who are caregivers 24×7. Caregiving is a relentless and an unforgiving responsibility but to those on the outside incidents like this became an occasion to pass judgement. Whereas it is far more complicated than it looks. The outcome is that Lucia is taken away from Grace’s care and back to the home.

While it has the makings of an internationally acclaimed novel there are moments in Small Days and Nights which are bewildering such as the act of Grace taking Lucia out of the home where she was well provided for and Lucia was obviously at ease. Why was it necessary to remove Lucia from her comfortable environs? Or an equally inexplicable act of Grace taking off for long weekends to the nearest city, Chennai, to be with her friends. Wanting time for oneself is a self-preservation act which is necessary for every caregiver but taking time out like this can only be managed if there are reliable people to step in while the primary caregiver is away. Caregiving is a responsibility and not a noble act. It is a constant in one’s life and impossible to take a break from even with support staff to help with the minute-to-minute supervision. And as Grace discovers to her dismay that once she was away Lucia was not being provided for instead she had been abandoned by the maid. Another cause for friction between Teacher, the villagers and Grace.

Small Days and Nights has a way of consuming one with a seemingly insignificant women’s domestic drama but lingers for much longer for the larger issues it raises such as what is the definition of a household, of a family, of relationships, of love etc? The responsibility of caregiving is a thankless task where every caregiver needs their safety valve moment without also having to tackle the judgement passed upon them by outsiders. It forces conversations upon readers about women and their world that would otherwise not under ordinary circumstances be considered as worthwhile.

Small Days and Nights is an unforgettable novel.

5 June 2019

Of books tackling medical science

06 10 , 2017 No Comments

Of late there have been a deluge of books making exploring medical science accessible to the lay reader too. This recognition of making technical knowledge available to the public in manageable morsels is a remarkable feat.

Maylis de Kerangal’s Mend the Living is a novel about a young man who goes into an irreversible coma after a car accident. His organs, including the heart, are to be harvested. Mend the Living is primarily about the heart being transplanted. It is a haunting book for sharing different perspectives of all those affected by the death of Simon Limbeau. It is not only his immediate family — his parents, younger sister and girlfriend, but also the medical personnel responsible for Simon and the patients who would be receiving his organs. It is an extraordinarily mesmerising story, almost poetic in its narration, which has been translated fluidly from French into English by Jessica Moore. Here is a fabulous interview of the author by the translator published in Bomb magazine who insists “I have a strong conviction: I consider the translator as a writer, an author. I always have the feeling of being a translator myself, translating French into another language, which is the French of my books. All this nomadism of texts, the movement from one language to another, I find it so stimulating and rich. I don’t want to say at all that books’ themes, subjects, and stories don’t interest me, but for me what comes first is how a book provokes an experience of the world via language. So all these foreign languages remind me of the fact that I feel like a translator myself, and that translators, in a way, are the authors of these books.” Mend the Living, a work of fiction, won the Wellcome Book Prize 2017 — a surprising choice given that most often it is awarded to non-fiction.

Poorna Bell’s memoir Chase the Rainbow is a tribute to her husband who committed suicide. He was a journalist who was able to mask effectively his acute depression and heroin addiction from everyone including his bride! It was only some years after her wedding did Poorna discover the truth by which time they had not only lost their home but were deep in debt. Mental health issues plague many but it is rarely discussed openly for the social stigma attached to it. Slowly there is a perceptible shift in this discourse too as more and more people are sharing their experiences of grappling with mental health issues or with their loved ones. This is critical since the caregivers too need support. It always helps to share information and challenging moments with caregivers in a similar situation without being judged — something those on the outside inevitably do.

Another fashionable trend in narrative non-fiction is to write histories of a significant medical occurrence. In this case Speaking Tiger Books has published the doctors-cum-writers team Kalpish Ratna’s competently told The Secret Life of Zika Virus .

Bloomsbury has published a former consumption patient and scientist Kathryn Loughreed’s packed-with-information account Catching Breath: The Making and Unmaking of Tuberculosis

Many, many more have been published. Many are readable. Many are not. It is a fine balancing act between an overdose of specialist information and storytelling. The fact is ever since access to information using digital tools became so accessible there been a noticeable explosion of science-based texts in publishing worldwide and it is not a bad thing at all!

An article worth reading is by Dr Siddhartha Mukherjee in NYT “The Rules of the Doctor’s Heart“, published on 24 October 2017. It is about his experience as a senior resident at a hospital in Boston in the Cardiac Care Unit, a quasi I.C.U. where some of the most acutely ill patients were hospitalized. One of his patients was a fifty-two-year-old doctor and scientist who had been admitted to await a heart transplant. It is an incredible essay!

Maylis de Kerangal Mend the Living ( Translated by Jessica Moore) Maclehose Press, 2017. Distributed by Hachette India

Poorna Bell Chase the Rainbow Simon and Schuster India

Kalpish Ratna The Secret Life of Zika Virus Speaking Tiger Books

Kathryn Loughreed Catching Breath: The Making and Unmaking of Tuberculosis Bloomsbury

6 Oct 2017 , updated on 30 Oct 2017

“The Lioness in Winter: Writing an Old Woman’s Life”

27 09 , 2017 No Comments

Ann Burack-Weiss’s The Lioness in Winter: Writing an Old Woman’s Life is a slim volume where she explores through women writer’s prose what it means to them getting old. For decades she herself has been a social work practitioner who focused from day one of her career on the caregiving of the elderly. It was unusual when she chose this vocation in the 1960s but four decades later it is not. ” I became a social worker with the aged because I was afraid for my life.” It gives her a perspective and an understanding in a particular phase of a woman’s life when she is inevitably relegated to grandparent duties whereas continuity theory states that as people age they do not change their patterns of thought or action but continue to approach life in the same way as they always have.

Ann Burack-Weiss has been fascinated with the memoir/ autobiography or the essentials of life-writing experience. It encompasses a range of forms such as the transcribed interview, dictation, journal, letter and auto-fiction. According to her since the 1960s feminist scholars have been explored the woman’s “agency” ( the ability to speak and act on her own behalf) or the lack thereof. “They note that, through the ages, most of the writing about women, in fiction and nonfiction, has been by men, and that the male lens inevitably leads to distortion.” But as she discovers that many of her quoted authors in the book — Colette, Fisher, Sarton, Florida Scott-Maxwell– had published compelling life writing well before the editors determined what was worthy of inclusion in their collections. “The only possible explanation for their exclusion is that the editors themselves had little interest in what the old women had to say.”

The writers included in this book are categorised according to arbitrary time divisions:

1862-1909 (Fin de Siecle) — Colette, Simone de Beauvoir, M.F.K. Fisher, Anai Nin, Florida Scott-Maxwell, Eudora Welty, Edith Wharton

1910-1929 (Progressive Era) — Diana Athill, Maya Angelou, Marguerite Duras, Marilyn French, Doris Grumbach, Carolyn G. Heilbrun, Madeline L’Engle, Gerda Lerner, Doris Lessing, Adrienne Rich, May Sarton

1930-1943 (Great Depression- World War II) — Isabel Allende, Mary Catherine Bateson, Joan Didion, Margaret Drabble, Annie Ernaux, Vivian Gornick, Toni Morrison, Joyce Carol Oates, Edna O’Brien, Mary Oliver, Marge Piercy, Anne Ropihe, Lynne Sharon Schwartz, Alix Kates Shulman

1944-1960 (Baby Boomers) — Diane Ackerman, Alison Bechdel, Terry Castle, Mary Gordon, Kay Redfield Jamison, Nancy Mairs, Nancy K. Miller, Alice Walker

It is interesting Ann Burack-Weiss chooses to quote Toni Morrison’s Nobel Prize for Literature ( 2002) acceptance speech where Morrison focuses on “word-work” and being an old woman. Toni Morrison’s last novel God Help the Child ( 2015) which began life as a memoir but transformed into a slim novel explores these very themes. It reflects upon the cycle of life from the perspective of an older writer. What truly struck me at the end of 2015 was that none of the “Best of 2015” lists included this novel even though it was “Toni Morrison”. Perhaps old age is too stark a reminder of one’s mortality.

It is a slim volume but gives one much to think about.

Ann Burack-Weiss The Lioness in Winter: Writing an Old Woman’s Life Columbia University Press, New York, 2015. Pb. pp.190

27 Sept 2017

Cathy Rentzenbrink

31 08 , 2017 No Comments

Reading Cathy Rentzenbrink’s memoir The Last Act of Love and the companion to it A Manual for Heartache is a gut wrenching experience. The Last Act of Love was shortlisted for the Wellcome Prize 2016 for its an account of how Cathy Rentzenbrink’s younger brother Matt had a head injury and was for eight long years in a coma. The medical term for it is PVS or “permanent vegetative state” or as their mother says of Matt “living corpse”. Matt was a teenager in his prime when he met with an accident that left him in this horrific state. The Last Act of Love is a compassionate account of a sister trying to understand what her brother must be going through if he can feel anything. More importantly it is an account of how much of themselves caregivers have to give to ensure that a patient is cared for well.

Caregiving can be a thankless task since it is repititive with no breaks whatsoever. After a while the sympathetic circle of friends and relatives return to their lives but the immediate family of the patient is responsible for the daily courageous and relentless task of caregiving. At times it can become exceedingly lonely, stressful and mentally debilitating. For Cathy Rentzenbrick her escape mechanism was reading.

Reading was still my friend, though. I read continuously and compulsively, drowning out sounds of my own thoughts with the noise of other people’s stories. I no longer turned out the light before going to sleep — I had to read until the moment my eyes closed. There could be no gap for the demons to jump into.

Most caregivers are caught in a cycle of maintaining systems that they forget to take care of themselves or share experiences about the roles they inhabit. These involve a bunch of questions about the quality of life the patient has to how effective are advancements in medical technology.

The Last Act of Love written many years after her brother passed away takes its title from a phrase the author’s mother used in her sworn affidavit to the court seeking legal permission to discontinue nutrition and hydration given how poorly Matt was with a chest infection and recurring epileptic fits.

I have known for some time that there is nothing I can do for Matthew to enrich his life in any way. He needs to die. We had hoped it would happen with an infection and without the need to approach the court. But the sad irony is that his poor body, unable to do anything else, seems capable of fighting infection. So we are asking the court’s permission to cease nutrition and hydration so that Matthew can be released from his hopeless state. It is our last act of love for him.

Writing The Last Act of Love may have been thereapeutic for Cathy Rentzenbrick but it certainly provides a much needed account of hope and a way of managing caregiving at home, many times the dilemma it presents. Sharing of stories is a relief for many in a similar situation but few have time to do so. Reading an account is possible.

Within months of the successful publishing of The Last Act of Love, Cathy Rentzenbrick wrote A Manual for Heartache which can be viewed as a sequel to her memoir but works very well as a manual for managing grief and loss. It is full of wisdom and gently with big dollops of kindness shares wisdom garnered over the years of caregiving for Matt.

Here are some invaluable excerpts from the book

On grief

What I now wish someone had told me is this: life will never be the same again. The old one is gone and you can’t have it back. What you might at some point be able to encourage yourself to do, and time will be an ally in this, is work out how to adjust to your new world. You can patch up your raggedy heart and start thinking and feeling your way towards how you want to live. That’s what I wish someone had told me and that’s what I want to tell you. I think I’m finally doing it.

On etiquette of bad news

It seems ridiculous that in the face of someone else’s misfortune we spend time worrying about our own behavious, but it’s only human and is particularly true when it comes to death and grief. I’m sure it was easier in Victorian times when there were prescribed rules, when society and the Church provided a framework. There was guidance on what to wear, how to communicate with people, how much time should elapse before everyone rejoined the business of life. Visible signs such as black crepe and mourning brooches made of jet acted as clues to the rest of the world. Like a version of the “Baby on Board” sign stuck in the back windscreen of a car, the blackness served as a warning that an individual needed to be treated kindly. All cultures have rituals around death and mourning but, in our increasingly secular society, it’s easy find ourselves unsure of what to do.

….

I have come to see there is a beauty in simply being present for someone who is struggling wiht a heavy burden. The best thing you can offer is unlimited kindness. People to whom the worst has happened can be out-of-control sad and unable to obey the normal rules of life. It mught be all they can do to hold on. If they are mean or cruel or temporarily incapable of good manners, we need to suspend our expectations around them and give them space and compassion as they splinter and behave badly and say the wrong thing. If they are behaving perfectly and holding themselves together, then that’s OK, too.

Reading both the books together is highly recommended. Share, share, share these books.

Update ( 5 Sept 2017)

The Guardian Longreads published a fascinating account of “How science found a way to help coma patients communicate“. It is worth reading!

Cathy Rentzenbrick The Last Act of Love Picador, an imprint of Pan Macmillan, London, 2015. Pb. pp.248 Rs 450

Cathy Rentzenbrick A Manual for Heartache Picador, an imprint of Pan Macmillan, London, 2017. Hb. pp. 150 Rs 499

31 August 2017

Literature on mental health

30 08 , 2016 No Comments

This past month I have spent a while reading literature about mental health. It was sparked off by the publication of the maginificent collection of essays edited by award-winning author, Jerry Pinto. A Book of Light: When a Loved One has a Different Mind consists of essays written by caregivers to mentally-challenged patients. These could be daughter, mother, son, father or even a close friend. All the essays are written by a caregiver who is also part of the immediate family so has witnessed the painful deterioration of the loved one. Some of the essays like Nirpuma Dutt on her adopted daughter though written using the literary device of an omniscient narrator is one of the most chilling and moving contributions. Every single essay stands out for the grief caused but also for the time and effort required in the caregiving which was mostly offered uncomplaingly and with total dedication. Amandeep Sandhu’s essay about his mother which I first read in draft many years ago continues to be powerful once published years later. As if this caregiving was meant to be. This was the truth. Jerry Pinto who won the Windham-Campbell prize in 2016 has been writing for years made his mark as a literary fiction writer with the splendid novel, Em and Hoom. A thinly disguised fictional account about his mother who remained in poor mental health for most of her life. It was twenty-six years in the making. Despite the vast variety of literature across genres and now his forays into translations, Jerry Pinto is at his best when writing about mental afflictions. There is a certain tenderness and sensitive understanding that seeps through his essays as it does in the introduction to this book and his curation of the essays.

Having read this splendid volume in one sitting I found some more books to read. For instance, Matt Haig’s powerful autobiography Reasons to Stay Alive. It is about his leading a perfectly normal life except to develop acute depression and have a nervous breakdown in his early twenties. He even attempted suicide but then slowly recovered with the help of his then-girlfriend and now wife, Andrea, and his parents. Today, he is a successful author for children and adults and is a social media influencer ( @matthaig1) .

When you are trapped inside something that feels so unreal, you look for anything that gives you a sense of your bearings. I craved knowledge. I craved facts. I searched for them like lifebuoys in the sea. …Things that occur in the mind can often be hidden. Indeed when I first became ill I spent a lot of energy on looking normal. People often only know someone is suffering if they tell them, and with depression that doesn’t always happen, especially if you are male ( more on that later).

Then I discovered bestselling author Jenny Lawson’s Furiously Happy that explores her lifelong battle with mental illness. It is written at a pitch that can get disconcertingly high, it is not easy trying to keep pace with the ups and lows in her life which are surpringly palpable in the text as well. But what truly shines through is the struggle of managing daily life and yet how determined she is. Simple things are daunting but the unimaginable fear she experienced when recording her audiobook turned her into a nervous wreck. So she finally turned to her friend, Neil Gaiman, for advice and this is what he texted her: “Pretend you’re good at it.” She took his advice to heart and shone.

Reasons to Stay Alive and Furiously Happy are two books written from the perspective of people who struggle with mental ill-health but have had the courage to write about it too. Offer an opinion that does not consider them over sensitive, peculiar and odd.

And then I read Oliver Sacks absolutely stupendous memoir On the Move. It was first published in April 2015 a few weeks before he succumbed to cancer on 30 August 2015, exactly a year ago today. In fine literary form it reflects upon a richly memorable life that spans eight decades focusing on his fascination with neurology, science, music, literature and his strong links with his family. Oliver Sacks came from a family of doctors where even his mother was a renowned surgeon. His father and two elder brothers were general practitioners but Oliver Sacks decided to become a neurologist. What is extraordinary is his recognition that when he began medical school in the mid-1950s there seemed to be an unbridgeable gap between neurophysiology and the actualities of how patients experienced neurological disorders. Neurology continued to follow the clinico-anatomical method set by Broca a century earlier, locating areas of damage in the brain and correlating these with symptoms; thus speech disturbances were correlated with damage to Broca’s speech area, paralysis with damage to motor areas, and so on. But by the mid-1980s scientists like Gerald M. Edelman were stating boldly that “We are at the beginning of the neuroscience revolution.” Having witnessed, documented and analysed significant neurological milestones writing about them in medical journals and popular magazines made him famous. It probably also helped recognise to some degree that mental ailments need to be discussed. Mentally ill patients are not pariah. Having firsthand experience of looking after a schizophrenic brother and extremely fond of a simple-minded aunt, a treasured member of their household he had a warm and sensitive generosity evident in the way he dealt with his patients too. More importantly he had a sense of history and an understanding to document what he experienced and analyse it. A rich and influential legacy he left on the way mentally-ill patients are perceived and how they can also learn to manage themselves. But at least he with his passion for neurological science made it possible for mental health to be made visible in public discourse. Otherwise how else would a well-known scientist and Pulitzer-award winner Siddhartha Mukherjee begin his fascinating account of the gene with a very personal account of his schizophrenic uncle?

Jerry Pinto ( Ed.) A Book of Light: When a Loved One Has a Different Mind Speaking Tiger, Delhi, 2016. Hb. Pp.180. Rs. 399

Matt Haig Reasons to Stay Alive Canongate, London, 2016. Pb. Pp. 270 Rs 499

Jenny Lawson Furiously Happy: A Funny Book About Horrible Things Picador, an imprint of Pan Macmillan, London, 2016. Pb. Pp. 330 Rs 450

Oliver Sacks On the Move: A Life Picador, London, 2015. Pb. Pp. Rs 499

30 August 2016

Ann Patchett ” This is the story of a happy marriage”

01 02 , 2014 No Comments

This is the story of a happy marriage is a collection of essays written by Ann Patchett over some years. These vary in length, covering a range of issues–marriage, divorce, being the primary caregiver of her grandmother and of her dog, on writing, and on being an independent bookseller. These function as a memoir, a fashionable genre, but Ann Patchett opts to put together and make available for public consumption only bits of her life. Funnily enough you do not yearn to know more than has been shared. My favourite three essays are the title essay, “The Getaway Car” ( published previously in Byliner https://www.byliner.com/originals/the-getaway-car ) and “The Bookstore strikes back” ( published previously in The Atlantic http://www.theatlantic.com/magazine/archive/2012/12/the-bookstore-strikes-back/309164/).

It certainly has been a pleasure discovering this fabulous book. Definitely one of the books I am keeping for some years!

Ann Patchett This is the story of a happy marriage Bloomsbury, London, 2013. Pb. pp. 305. Rs. 450

1 Feb 2014

On caregiving, review of Jai Pausch’s “dreams new dreams: reimagining my life after loss”

29 07 , 2012 No Comments

Jai Pausch, dreams new dreams: reimagining my life after loss (Two Roads Books, an imprint of Hodder & Stoughton, Hachette UK, 2012. Pb, Rs. 295. pp. 224)

In September 2007 Carnegie Mellon Computer Science Professor Randy Pausch’s “The Last Lecture: really achieving your childhood dreams”. ( ) It went viral and within a short space of time had over 10 million views. It resulted in a media buzz and the professor being invited to talk shows across America. In 2006 he had been diagnosed with pancreatic cancer. By the time he delivered his speech, he was terminally ill, having been given only 3-6 months to live by the oncologist. (He was to defy the prognosis by a few months. He died on 25 July 2008.)

His wife Jai Pausch published a memoir dreams new dreams: reimagining my life after loss ( documenting her time as Randy’s primary caregiver and how she learnt come to terms with his death and move on. It is a very moving account of how she learned to balance mothering, housekeeping and being primary caregiver to her husband. Their children were Dylan (four-and-a-half), Logan (twenty-two months) and Chloe (three months whom Jai was nursing) when Randy’s cancer was discovered. It was tough for her. But she writes movingly about learning how to take on more responsibility as Randy’s condition deteriorated. Very quickly she learnt that self-preservation is as important as caregiving. So she learnt to rely on help from family, friends, neighbours to the extent that they helped her unpack her belongings and settle into a new home.

Caregiving at the best of times is a very difficult responsibility and there is no respite, especially if you are the primary caregiver. Schedules of the caregiver, the daily humdrum (which are equally important) can easily go for a toss if not monitored equally diligently, but it becomes quite challenging if it also involves looking after small children. The mother is torn between her responsibilities. And this is something that comes through in Jai’s memoir. When Randy was being given chemotherapy in a different city, she would spend the week with him only to return home to spend the weekend with her children and do everything with and for them, including cooking a regular meal.

A big concern for a caregiver is the looming fear of death. It is a numbing feeling that makes thinking or doing any normal chore nearly impossible since the mind is always worried about losing the loved one to death. It is only when the caregiver faces the reality that some sense of peace begins to creep in. A similar feeling is expressed by Jai when Randy tells her that he saw his dead father in his room. “After months of worry and fear, after living in the shadow of death and witnessing the pain of letting go of life, Randy’s death came as somewhat of a relief to me. I could let go of Randy or at least the role of caring for him. I could stop trying to save my husband by running him to experimental treatments. I could quit obsessing over every change in his health status, stop worrying that even the smallest symptom, like bloating, could be a sign of something more serious, such as kidney failure. The strain of keeping him alive each day, which weighed terribly on me, was now gone.”

The pressure of being a caregiver is exhausting, but it is worsened by being unable to share one’s experiences or even let off some steam once in a while. It is quite normal to want to vent one’s emotions. Jai was fortunate enough to have “had a friend to whom I could talk about my feelings without fear of being misunderstood.” This recognition of reaching out to other people in a similar position like herself had prompted her to write this memoir. She writes, “Their grief and guilt they felt for mistakes they perceived they had made echoed some of my own feelings. I asked myself, Where is the help for folks like us who tirelessly give to our dying loved ones? Why wasn’t the medical community concerned about the people who struggle to carry the medical burden while also meeting normal everyday demands?” With this book she hopes that “my dream is that my story will legitimize what caregivers undergo willingly and bravely as they care for the person they love. Patients need and deserve support, but it’s time for us as a community to understand that suffering that is shouldered, sometimes silently, by our family members, neighbours, friends and coworkers. We need to offer help to these people, to develop and implement programmes at cancer centres and other organisations. We need to empathize with that person taking on the duty of overseeing the patient’s care and well-being. Finally, we need to care for the caregiver.”

dreams new dreams is a must read for all caregivers. Without being dull or voyeuristic, it is sensitively told — it is honest, frank and a useful aid on caregiving.

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