Tag Archives: mukund acharya

Ikigai: A Roadmap for Sukham

Sukham Blog – A monthly column focused on South Asian health and wellbeing.

All of us want fulfillment, joy, and contentment – Sukham – in our lives. Who wouldn’t? Getting there often seems difficult, however.  As we go through life, one thing or another seemingly thwarts our attempts to reach that goal.  Sometimes we fear it’s unattainable.  Wouldn’t it be great if we had a prescription; a roadmap to guide us around those obstacles that life throws at us, and succeed in being happy and feeling fulfilled as we go about our daily lives? Attain that which seems just out of our grasp?

Many consider Ikigai –  a thousand-year-old Japanese ideology – to be just that prescription. Translated as “a reason for being,” the concept of ikigai refers to having a direction or purpose in life and obtaining a sense of fulfillment, by taking actions that give satisfaction and a sense of meaning. Ikigai refers to the pleasures and senses of life; it is that which makes us want to get up each morning. Gai, or “the reason,” is the key to finding value in your life.

Andrew Barry writes that our values are the driving force we need to live a better life, to be happier, and to make better decisions. “Clarifying your values is more important than setting goals,” he argues. Clear identification of one’s values is central to the Ikigai concept.  Noriyuki Nakanishi of Osaka University Medical School, also quoted by Barry, explains it this way:

The word ‘ikigai’ is usually used to indicate the source of value in one’s life or the things that make one’s life worthwhile (for example, one might say: ‘‘This child is my ikigai’’). Secondly, the word is used to refer to mental and spiritual circumstances under which individuals feel that their lives are valuable. There is a difference between ikigai and the sense of well-being. Ikigai is more concerned with the future: for example, even when one feels that one’s present life is dark, possessing a desire or goal for the future allows one to feel ikigai. Ikigai gives individuals a sense of a life worth living. It is not necessarily related to economic status. 

People willingly do things for which they feel ikigai, Nakanishi says; they do not need to be forced. Ikigai is personal; it reflects the inner self of an individual and expresses that faithfully. It establishes a unique mental world in which the individual can feel at ease.

How do you go about finding your own ikigai? 

Ken Mogi’s book – The Little Book of Ikigai

In The Little Book of Ikigai, Ken Mogi, a neuroscientist, and bestselling author describes five pillars that help embed ikigai in our daily lives and actions: 

Pillar 1: Start small

Start small with whatever you do; dedicate time and effort through each step until it reaches the best shape. This mindset is influenced by the Japanese culture of Kodawari that emphasizes and highly values pride in what we make, always striving to create the best.

Pillar 2: Release yourself

Release yourself to sensory beauty, flow, and creativity. Develop the ability to break free and open up to the sensory universe and its beauty. The Japanese pay close attention to detail and recognize the time and effort devoted to a task. Paying attention to the sensory experience is key to enhancing your work, whether it be craftsmanship, high-tech manufacturing, or just about any task you carry out. That attention to sensory experience releases flow and creativity. You derive pleasure when you are so much into the activity, that everything else ceases to matter. In this state, recognition for your work, payment, or other rewards cease to matter; the satisfaction you derive from the task becomes paramount and enhances your wellbeing regardless of other outcomes. 

Pillar 3: Harmony and sustainability

Japan is a collectivistic, group-oriented society that values sustainability over self-fulfillment, personal autonomy, and freedom of choice. This cultural mindset places a high value on nature, and on the need to be in harmony with both people and the environment.

Pillar 4: The joy of little things

This pillar emphasizes deriving pleasure and value from little things –watching the sunrise, savoring a favorite dessert, observing children at play, and countless other things. 

Pillar 5: Being in the here and now

Staying focused and mindful on the present activity without distractions of the past or concern about what is to come is a well-understood and valued concept.

A common, ‘western’ interpretation of ikigai is to find the Venn-diagram intersection of what you love, what you are good at, what the world needs, and what you can be paid for.  True ikigai is about striving for the best in everything you do, regardless of reward or recognition, pouring yourself into the task at hand, unleashing your creativity, finding beauty and harmony in things big and little, and being in the here and now. Ikigai seeks to cultivate a mindset that opens the pathway to happiness. It’s not about money or achievement. Taking care of the little things will lead you to your bigger goals. Ikigai is unique to each of us; we will discover it once we know and understand ourselves really well. Embedding it in our lives will strengthen our enthusiasm and zest for life, and help us find fulfillment, joy, and happiness in our work, our relationships, and our lives. Each of us needs to discover the passion and talent that gives us meaning, and then live it accordingly.  

García and Miralles describe 10 “rules” to follow in Ikigai: The Japanese Secret to a Long and Happy Life: stay active and don’t retire; take it slow; don’t fill your stomach; surround yourself with good friends; get in shape for your next birthday; smile; reconnect with nature; give thanks; live in the moment; follow your ikigai.  

The Japanese are well known for their longevity. Okinawa – once called the land of immortals – is one of five places in the world named Blue Zones, where people live longest and are healthiest. Okinawans possess the driving force of ikigai; despite hardships, they have a reason to live, purpose in life, strong social networks, and a lifelong circle of friends. Ikigai is embedded in their lives, careers, relationships, and hobbies.

Ikigai is about attitude, purpose, activity, simplicity, focus, connection, and an understanding of self. It is an integral component of health and wellbeing.

Nakahashi says the desire for ikigai is a universal human experience. What’s your ikigai?

Mukund Acharya is a regular columnist for India Currents. He is also President and a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area that advocates for healthy aging within the South Asian community. Sukham provides curated information and resources on health and well-being, aging, and life’s transitions, including serious illness, palliative and hospice care, death, and bereavement. Contact the author at [email protected]

With sincere thanks to Ken Mogi and to Oriento at Unsplash for the use of their images.

 

Fading leaves signify Dementia (Image by Tolga Ulkan)

Amma Has a Dementia Diagnosis. What Now?

Sukham Blog – A monthly column focused on South Asian health and wellbeing.

Last month, we talked about what we should do if we were concerned about Amma’s recurring memory lapses. In this article, we explore options and describe the steps to be followed if Amma receives the diagnosis we were dreading – tests that confirm she is in the early stages of dementia. Her symptoms are consistent with an underlying progressive and irreversible illness that is causing damage to the complex system that controls cognitive function: the neurons or nerve cells in her brain, and the networks they form with other neurons. These symptoms could be caused by any one of a half-dozen diseases; Alzheimer’s is the most common one to affect older people. Parkinson’s disease also often leads to symptoms of dementia.

It is never easy to receive such a diagnosis. The news is earth-shattering, not only for the patient but also for the entire family circle. A vibrant individual will slowly but surely lose his or her identity, mind, and sense of self, and slowly forget all lived events; forget everything and everybody – as though that life never happened. Like a frame from which a precious photograph slowly fades until it is gone. The patient lives unaware in this wicked prison, while those around her agonize helplessly. These cruel diseases strike not just the patient, but the entire family. Perhaps we’ll find a cure one day. Perhaps we’ll find more ways to delay disease progression and reduce the symptoms, enabling a longer, meaningful life.  Science and medicine have made progress in the past couple of decades, and there is hope of more to come in the future. In the meantime, what is the best we can do to cope?

Strategies to help with the dementia diagnosis.
Strategies to help with the dementia diagnosis.

Amma’s diagnosis calls for a mobilization of the immediate family to participate in a strategy session with her. You should look at Amma’s circle to decide if any of her close and intimate friends should be included. The objective of this effort should be to develop short and long-term plans that address several different issues, including: dealing with the emotional impact of the diagnosis on Amma and the rest of her circle, understanding the diagnosis and treatments available, making financial, legal, and personal plans, addressing safety and living arrangements, understanding all available support, and developing a comprehensive care plan that puts Amma at the center, and considers the impact on her family and very close friends.

Some excellent tips provided by the National Institute of Health and the Alzheimer’s Association serve as a guide and starting point for this strategy session. While the main focus is the newly diagnosed patient, much of this applies to his or her circle as well. I’ll describe in brief what’s available to Amma in these two resources. It is very important for all involved to be open and honest with Amma, and with each other about what lies ahead; to share and understand one another’s perspective.

When one hears of the diagnosis, the gamut of emotions covers a range that includes denial, anger, resentment, depression, fear, loss, grief, and a sense of isolation.  These emotions will be with you for a while, and you’ll need to find healthy ways to deal with them. The Alzheimer’s Association provides many excellent suggestions. Know that you are not alone; that there is a large community out there living and coping with dementia and its impact, and you can draw on them for learning and support. Talk to the doctors to learn more about the disease and its likely progression and the available treatments. Find out if any clinical trials might benefit you. While a cure is still not in our grasp, the medical profession is learning more and more about the disease and how to handle it.

You will have to learn to live with this disease, and an important step is to share the diagnosis with those who matter in your life. Continued interaction with them is an essential part of your life, and knowing about your diagnosis and normalizing it is the healthiest way to maintain and grow your relationships with them. Be prepared for varying and unexpected reactions from others. Take your time doing this; the sharing will raise new emotions. Remember that there is no more stigma associated with dementia than with a diagnosis of heart disease or cancer. Know that this is not your fault! As the disease progresses, your abilities will change. Accordingly, you will need to prepare yourself for role changes, for gradually becoming more dependent on others.  This reality can be very difficult for many; however, it is the new reality.  Openness, honesty, and trust on all sides are essential.  

Develop a detailed plan for your future that covers legal, financial, living, and end-of-life decisions. Make sure that those legal and financial affairs are in order, and prepare an updated Advance Health Care Directive as soon as possible. Get a good understanding of the resources that may be available to you. Take a deep look at your living arrangements. You live alone right now. Do you need to plan for a different arrangement, either now or sometime later? 

Safety and the ability to take care of yourself should be prime considerations. Prepare to give up your independence, and accept that it is okay to get help from others. Make plans for a transition to living arrangements that best suit you and your family, one that will provide the support and care that you need. Proactively build your own care team that could include family, friends, neighbors, and medical professionals. Avoid isolation and stay socially connected. Learn about all the support services in the area where you live. Get educated on all the treatments and clinical trials that may be available for your particular condition. Understand what drugs are available to delay cognitive decline, and ease any symptoms that you have. Find out if any alternative treatments or medications are available.

Another source of support to consider is Palliative Care. This medical subspecialty is available in most large hospitals and medical clinics. A multi-disciplinary palliative-care team works alongside the medical care team to help the patient and family address their psychosocial, spiritual, and medical needs. They can help improve the overall quality of life, manage symptoms like agitation, poor or altered sleep, pain, and distress, advise families on what to expect over time, and provide guidance for decision making.

Amma, you have a life-changing diagnosis, but with a detailed action plan ready, with a good support system and a self-care plan in place, you can live well and look forward to a healthy life in which you focus your energy on what matters most to you! 

Mukund Acharya is a regular columnist for India Currents. He is also President and a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area that advocates for healthy aging within the South Asian community. Sukham provides curated information and resources on health and well-being, aging, and life’s transitions, including serious illness, palliative and hospice care, death, and bereavement. Contact the author at [email protected]

With sincere thanks to the Alzheimer’s Association and Tolga Ulkan at Unsplash for the use of their images.

 

Quest of a Modern Day Yogi in America

Come walk with me

I’ve been revisiting the rich teachings and wisdom of my Vedic heritage as I traverse my golden years. Examining them through the lens of the world around me today, I realize the need to re-interpret Vanaprastha and Sannyasa for myself, for the present day in which I live. Back in those ‘golden-olden’ days, society looked after an individual entering Vanaprastha; he or she did not have to worry about the next meal or a roof overhead.  Today, so many of our fellow seniors cannot see beyond a meal for the day. How can they possibly contemplate transitioning from the obligations of a householder? How can they detach from society to enter introspection? How best can the more fortunate among us – those who have enjoyed a decent life, and are now reasonably secure in their circumstances – deal with the ‘emptiness’ of the transition from Grihasta?

Come and walk with me for a while on my quest to be a modern-day Yogi in today’s America, and I’ll tell you.

Historic path to self-realization

Patanjali’s Yoga Sutras is a collection of around two hundred statements, observations or truths that describe the science of Yoga in its entirety. The Yoga Sutras describe the Raja Yoga, or Ashtanga Yoga – the eight-step practice that enables individuals to attain self-control, discipline, internal clarity, peace and ultimately self-realization or Samadhi – the ecstatic union of the individual with the cosmos. Scholars believe these primary scriptures of Yoga were written around the 2nd century BCE. Through the intervening centuries, philosophers and learned sages have been pulling at the threads of Patanjali’s work, translating and explaining them for our consumption.  

Each stage or limb of Ashtanga Yoga builds naturally on those that precede it. The first four limbs are designed to help us gain control over our bodies and become aware of ourselves. When you or I talk about ‘practicing yoga,’ we are referring to Asana, the third limb which follows Yama and Niyama.  The postures we practice – often referred to as Hatha Yoga – help us maintain physical health and well-being.  In addition, they promote self-discipline, focus and concentration, and prepare us for meditation. Pranayama, which literally means life-force extension, is the fourth limb of Ashtanga Yoga, and consists of breath-control techniques to rejuvenate the body and extend life. It is either practiced on its own, or integrated into Hatha Yoga routines. 

The next three stages, Pratyahara, Dharana and Dhyana are preparation for the last, ultimate stage: Samadhi. They involve a conscious withdrawal from the outside world and an effort to transcend external stimuli to focus increasingly inward. This cultivation of detachment and an increased effort to concentrate and singularly focus inward, while leveraging the training in posture and breath control leads naturally to Dhyana: meditation or contemplation.

Meditation or Mindfulness?

In Eastern philosophy, cultures and tradition – whether it be the scientific path of Yoga or one of the more monastic forms of Buddhism, meditation is a practice that combines inward focus and concentration with controlled breathing, allowing individuals to follow their breath to an inner harmonious state. Harmony, peace, tranquility, and compassion both for self and others should follow.

The prevalence of meditation in other cultures and religions, including Judaism, Christianity, and Islam has traditionally been described by scholars as self-administered techniques for inner transformation. Attempts to link meditation and spirituality have created controversy. Western meditation typically involved the reading of religious texts, prayer, and contemplation.  Worldwide interest in Eastern forms of meditation and their adoption began in earnest around the middle of the 20th century as travel increased. The same period witnessed a rapid decline of religion, especially Christianity, in the US, Europe, and most of the Western world. This trend, coupled with a marked increase in stress and mental-health issues induced by the unrelenting pace of modern life and work began to drive people to seek other sources for comfort and healing; to the practice of meditation and the health benefits that accrue from it.  A growing body of scientific evidence verifies what Patanjali taught centuries ago: regular meditation improves physical and mental health; it reduces blood pressure, helps with digestive disorders, eases the symptoms of anxiety and depression, improves sleep, and promotes physical changes in the brain that promote better overall health.

We often hear the term mindfulness these days; some use it interchangeably with meditation. There are differences, however. Meditation is a practice, while mindfulness is a state or quality. 

Dr. John Kabat-Zinn, creator of the Mindfulness-Based Stress Reduction (MSBR) program defines mindfulness as “the awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally.” 

Mindfulness is a cultivated behavior, the process of focusing one’s attention. We can derive a lot of value by making it part of our way of life. Mindfulness and being in the moment are key to building resilience and overcoming adversity and stress. The essence of mindfulness is embedded in the practices of Ashtanga Yoga. 

Whether you are on the Ashtanga path towards the ultimate goal of a Yogi, an agnostic, or a disbeliever; whether you practice this or that religion or are an atheist, whether you are on the modern-day treadmill seemingly getting nowhere, or attuned with Mother Nature with days filled with purpose, the regular practice of meditation is good for your body, your mind, and your soul. Regardless of what terminology you use – mindfulness or something else, the ability to focus your attention and be in the present moment with equanimity is worth developing.  Attributions to East or West and distinguishing between shades of meaning may be interesting philosophically or may make for a robust debate, but they do not change the individual outcome. Meditation, pranayama, and mindfulness transcend culture, religion, and national or political boundaries. They have intrinsic value. Pranayama and meditation should be part of all stages of our life journey. I’m trying to make them part of mine.

Heading towards Liberation

In Vedic culture, the path of Ashtanga Yoga weaves through the four Ashramas or stages of spiritual life.  Beginning with Brahmacharya or student life, the Ashramas set a living framework and define spiritual practices based on the duties and responsibilities required at each stage of life, as the individual progresses on a path towards ultimate self-realization or Samadhi.  Brahmacharya sets the foundation, provides learning about family life and community, teaches spiritual practice, and provides yogic training. The second stage of life is spent as a Grihastha or householder – raising and supporting a family, following one’s worldly interests, continuing to drink from the fountain of Jnana, and carrying out the teachings of Bhakti and Karma Yoga. Once these responsibilities are fulfilled, the individual begins to withdraw from the world into the transitional stage of Vanaprastha, counseling the family and community while becoming increasingly more detached, with decreasing attention to the world and surroundings. Attention instead turns inward in preparation for the final stage: Sannyasa or renunciation, working towards the attainment of Samadhi, and ultimately seeking Moksha or salvation.

Every religion and culture addresses Moksha –liberation from the state of being human to become one with the cosmos or some higher power – in its own terms, and with its own descriptions and definitions of both the pathway and the ultimate end state. The Bhagavad Gita describes three margas or pathways: Bhakti (devotion), Jnana (knowledge), and Karma (duty or service). You will find proponents and devoted followers of each approach. The descriptions, discussions, and discourse on each alternative, and the relative merits of one versus the other would fill a small library. 

While commenting on Adi Sankara’s renowned devotional hymn Bhaja Govindam, the elder statesman and writer C. Rajagopalachari stated “the way of devotion is not different from the way of knowledge or jnana. When intelligence matures and lodges securely in the mind, it becomes wisdom. When wisdom integrates with life and issues out in action, it becomes bhakti. Knowledge when it becomes fully mature is Bhakti. If it does not get transformed into Bhakti, such knowledge is useless tinsel. To believe that knowledge and devotion, jnana and bhakti are different from each other is ignorance.”

Intuitively, and from an objective viewpoint, one could argue – and I do – that ultimately all three paths overlap. I would leave the distinctions to philosophers and debaters.

Re-defining my path

This sets the stage for the central tenet I wish to present. Each of us is formed by our experiences. The older among us were born in India, growing up in an environment with traditional culture and roots, in society and familial environment that formed our values and guided our practices of daily living.  We now live – either in India or relocated in our adopted countries – in a modern world that has transformed significantly in the space of a generation. During this transformation, we’ve had to adapt to a new way of life.  We’ve changed in many ways and adjusted to different societal norms and thinking. The attitudes and practices of daily living have changed for most of us. I would argue that in either era – then or now, most people would not move all the way up the ladder of Ashtanga Yoga and attain a level of Yogic discipline and practice to be prepared and ready to renounce their way of life and enter Sannyasa in a quest for Samadhi. A few might, but not most.  To the rest of us today, I pose the question: can we adapt the guidance of our ancient Yoga Scriptures and build for ourselves the model of a modern-day Yogi?

I posit that we should embrace the conceptual basis of Vanaprastha and Sannyasa spiritually, and adapt them for our modern times. We should treat Vanaprastha not as a time for transition and withdrawal, but as a time for liberation and increased activism. During this stage of life, Bhakti Yoga provides enrichment, courage, and support as we sustain ourselves in the face of the realities of aging. Let’s leverage this support to actively pursue the path of Karma Yoga –selfless service to others – and work for the benefit of our communities, always dipping into the ocean of Jnana to learn how better to serve our fellow man. Continue to find strength and comfort in Bhakti Yoga.  By doing so, we will find our Sukham – joy and fulfillment.  As we continue our service, we will slowly but surely embed tiny fragments of ourselves in our fellow human beings, and find our own salvation through each of them. We will successfully make our transition to an ecstatic union with the cosmos.

Mukund Acharya is a regular columnist for India Currents.

Brain with symptoms of Dementia (Image by Natasha Connell from Unsplash)

Are Amma’s Memory Lapses Normal?

Sukham Blog – A monthly column focused on South Asian health and wellbeing.

Amma is fiercely independent. “I’ll take care of myself as long as I can,” she insists. Living by herself, she manages all her needs. Not being a burden on others is a matter of pride for her, and we, her children, are really proud of her. A couple of months ago, however, we began to notice changes that made us uneasy. On a shopping trip one day, she couldn’t recollect why she’d come after we got to the store. Last month, after dinner at her home, she wondered aloud if she had taken her medicines, although we had seen her do so just fifteen minutes earlier. She asked me over a few days ago to help move some boxes but didn’t remember that when I got there. Were her memory lapses normal? She seemed just fine otherwise! 

We all forget things.  I thought I left the car keys right here, but I don’t see them now.  Did I lock the front door?  Did I turn off the stove?  It was really embarrassing – not remembering her name when she came up to say hello at the party last night. Memory lapses are commonplace, and we generally brush them off casually – even jokingly sometimes, saying “I had a senior moment,” implying that such behavior is associated with aging. However, it’s really important we learn to recognize when such incidents are not normal memory lapses, but signs of something more serious – signs of dementia.

Forgetfulness is often caused by normal, age-related memory loss. It can also result from lack of sleep, or be induced by stress or depression, even in younger people.  When it is part of a larger pattern, however, it could be a warning sign of dementia; an umbrella term that describes a collection of symptoms including changes in thinking, memory, or other cognitive functions. Dementia can be caused by a number of disorders that affect the brain such as Alzheimer’s disease, vascular dementia, or Lewy Body disease – to name a few. People with dementia have significantly impaired intellectual functioning that interferes with normal activities and relationships.   

The Alzheimer’s Association provides a very useful guide to recognizing the 10 early signs or symptoms of dementia:

  1. Memory loss that disrupts daily life.
  2. Challenges in planning or solving problems.         
  3. Difficulty completing familiar tasks.
  4. Confusion with time or place.
  5. Trouble understanding visual images and spatial relationships.
  6. New problems with words in speaking or writing.
  7. Misplacing things and losing the ability to retrace steps.
  8. Decreased or poor judgment.
  9. Withdrawal from work or social activities.
  10. Changes in mood and personality.

Here are some examples of such behavior:  Trouble balancing a checkbook. Forgetting dates and events. Repeating the same questions over again. Trouble following a recipe they’ve used for years. Difficulty concentrating or taking longer to do things than before. Remembering directions to a place they have visited often. Forgetting where they are or how they got there. Inability to keep up with a group conversation. Losing things and/or accusing others of stealing. Giving up hobbies and other regular activities. Losing interest in social activity. Experiencing sudden mood swings, or easily getting fearful or anxious. If you begin to see repeated patterns of these kinds of behavior in yourself, a family member, or a friend, do not ignore them!

A slight, but noticeable and measurable decline in cognitive abilities, including memory and thinking skills is called mild cognitive impairment or MCI. MCI usually does not significantly affect a person’s ability to carry out his or her daily activities, although you can usually spot its symptoms if you know what you are looking for.  An early diagnosis of MCI and identification of possible causes – such as the side effects of medication – is very important. People with MCI (this includes about 15-20% of seniors over 65) are more likely to develop Alzheimer’s or other dementia-related diseases. Some in this population remain stable or get back to normal cognition if the underlying cause can be removed. In many cases, however, MCI is an early stage in the onset of Alzheimer’s or other dementia-related diseases. 

Alzheimer’s disease is one of several terminal, progressive brain disorders with no known cause or cure.  The Food and Drug Administration (FDA) has approved a few drugs for the treatment of its symptoms. However, memory, cognitive functions, and the ability to care for oneself continue to decline, until the individual has little awareness of his or her surroundings and requires round-the-clock supervision and care, including help with personal care and all other activities of daily living.

It’s therefore even more important to contact a doctor as early as possible for a thorough examination if a parent or other family member shows signs of cognitive impairment or dementia. A specialist in cognitive function can conduct a thorough examination and evaluation that includes physical exams, diagnostic imaging, and neuropsychological testing, to determine whether these are symptoms of normal aging, of MCI that is potentially reversible, or of a condition that will eventually progress to dementia.  There is no single definitive test; neurologists, geriatricians, and psychiatrists typically use a combination of tests and assessments in their diagnosis.

The statistics on dementia and Alzheimer’s disease are grim. Around 50 million people live worldwide today with dementia-related disorders. Alzheimer’s Association estimates that six million Americans currently live with Alzheimer’s, increasing to 13 million by 2050.  Dementia and Alzheimer’s related deaths increased by 16% during the current COVID pandemic.  The Centers for Disease Control and Prevention ranks it the sixth leading cause of death in the United States; it kills more than breast and prostate cancers combined. Between 2000 and 2019, deaths from heart disease decreased by 7.3%, while Alzheimer’s related deaths increased by 145%. 15% of the population 70 and older has dementia. 1 in 3 seniors dies with Alzheimer’s or another dementia. Dementias will cost the US an estimated $355 billion this year, not accounting for more than 11 million people who provide unpaid care for family members or friends. 

This is a national and worldwide crisis, and we need to learn to recognize potential signs of dementia and act early if we see them.  We also need to learn how to deal with dementia.  A subsequent article will discuss what to do if Amma receives a dementia diagnosis.

Mukund Acharya is a regular columnist for India Currents. He is also President and a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area that advocates for healthy aging within the South Asian community. Sukham provides curated information and resources on health and well-being, aging, and life’s transitions, including serious illness, palliative and hospice care, death, and bereavement. Contact the author at [email protected]

 

Melting Glacier (Image by Melissa Bradley at Unsplash)

Climate Change and…the Loss of Sukham?

Sukham Blog – A monthly column focused on South Asian health and wellbeing.

When I see or hear the words Climate Change, I conjure up mental images of global warming, rising temperatures, melting ice caps, rising ocean levels, increasing CO2 and methane emissions, more frequent extreme weather events such as flooding, drought, and wildfires, and our planet Earth rapidly becoming less habitable for present and future generations.  My mind does not turn immediately to the ongoing impact on human health, and the decreased quality of life that brings for people, something that is also happening today. Climate change is a big driver of poorer health and circumstance, resulting in hardship and loss of contentment – loss of Sukham for millions of our fellow human beings. Climate change and Sukham are intertwined.

We – the general public – need to be acutely aware of all the ways climate change can affect our health. We need to learn how we as individuals, as communities and as nations can respond.  Climate change as a current and future public-health crisis is not getting the attention it desperately needs. 

We often hear about the effects of air pollution on our respiratory system and eyes, and the need to take precautions, especially for those with asthma and other respiratory ailments. Plants produce pollen for longer periods in warmer conditions. Grass pollen and plant growth increase with increased carbon dioxide concentrations, causing longer and more intense allergy seasons. For some individuals, including this author, the allergy season now stretches from early spring into late fall.  In her 2019 Scientific American article, Emily Holden describes the associated worsening of respiratory illnesses and heart and lung disease. There are several other health impacts that we will discuss. However, climate change is not just making people sicker. Dr. Renee Salas, an Emergency Medical Physician at Massachusetts General Hospital and Harvard Medical School leads a working group of over 70 U.S. organizations, institutions, and centers working at the nexus of climate change and health. “The climate crisis is impacting not only health for our patients but the way we deliver care and our ability to do our jobs. And that’s happening today,” she says. For example, changing heat patterns affect the way in which prescription medicines work. Climate events impact the availability of critical medical supplies in hospitals. Disruption of electric power supply to homes, hospitals, and clinics puts the lives of patients at risk.  Evidence is mounting for decreased survival of cancer patients due to treatment disruption caused by extreme weather events.  These are just some of the ways the health care we receive is being impacted.

Climate Change CDC infographic
Climate Change Infographic (Image by the CDC)

The accompanying infographic from the National Center for Environmental Health at the US Centers for Disease Control (CDC) provides an easy-to-understand overview of these health impacts of climate change.   Coupled with other natural and human-made health stressors, it influences human health and the spread of disease in a number of ways.  Physical, biological and ecological systems are impacted. The four primary manifestations of climate change are portrayed in the center of the graphic. Together, these manifestations drive eight primary responses: extreme heat, severe weather, air pollution, water quality, increasing allergens, environmental degradation, impacts on food and water supply, and changes in the ecology of vectors – agents such as mosquitoes, ticks, fleas, parasites and microbes, which carry and transmit infectious pathogens into other living organisms, thereby spreading a variety of diseases.  These eight primary responses in turn result in heat-related illnesses, asthma and respiratory disease, cardiovascular disease, mental health impacts, forced migration, civil conflict, malnutrition, and a wide range of diseases ranging from diarrhea and cholera to malaria, dengue, chikungunya, and the West Nile virus. The complete list is frightening. 

The CDC points out that some of the existing health threats will intensify and new, as yet unknown health threats will emerge.  Some of these impacts are global, others are national and/or regional.  Children are disproportionately impacted by some of the health issues.  Health inequity puts parts of the population at higher risk, based on their age, economic status, geographic location, and access to resources. The U.S. Global Change Research Program published a detailed scientific assessment describing how climate change is already affecting humans, and what we may expect in the years to come. This is an excellent resource for those who want a deep dive on this subject.

What is being done about this public health crisis?  The US National Academy of Medicine (NAM) is leading the way in collaboration with the National Academies of Sciences, Engineering, and Medicine (NASEM).  They are developing an initiative to comprehensively assess the health risks of climate change and develop strategies to address both drivers and impacts.  In October 2020, they announced the NAM Grand Challenge on Human Health and Climate Change.  This is a multi-year strategic initiative to develop public-private partnerships with three objectives:  develop a comprehensive and long-term roadmap for transforming systems — such as health care, transportation, infrastructure, or energy – which impact or are impacted by climate change, with a focus on human health, well-being, and equity; mobilize all actors and institutions in the health community; and launch a global competition to foster innovative interdisciplinary research and actionable solutions at the intersection of climate change and human health.  Several other private and governmental efforts are underway across the world.

What can you and I do to help?  Learn more about these impacts and the response.  Inform and educate our friends and family. Support ongoing efforts and advocate for local and national programs to combat it. We cannot afford to do nothing. The health and Sukham of our fellow humans and that of future generations are at stake!

Mukund Acharya is a regular columnist for India Currents. He is also President and a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area that advocates for healthy aging within the South Asian community. Sukham provides curated information and resources on health and well-being, aging, and life’s transitions, including serious illness, palliative and hospice care, death and bereavement. Contact the author at [email protected].

 

The Launch of Sandhya’s Touch

We are delighted to announce the launch of Sandhya’s Touch, a non-profit organization whose mission is to improve the quality of life of people dealing with chronic or serious illness. We do this by supporting projects that provide services, support and care that ease the burden of suffering for these patients and their families, and by sponsoring community education and outreach events that will result in better care and outcomes in such situations.

Dedicated to the memory of Sandhya Acharya who confronted cancer with amazing resilience and grace while bringing joy and support to her loved ones every day, Sandhya’s Touch forms partnerships with organizations and institutions in the community to meet its mission and objectives.

Two projects have been funded as of this launch date, a third is under active consideration, and four more projects are in the pipeline.

Please visit sandhyastouch.org for more details about our mission, leadership, partners and projects.  We welcome grant requests from established community organizations and institutions for projects that align with our mission. Projects must directly support people and families dealing with serious and chronic illness to improve the quality of their lives. For more details on how to apply, contact us at  [email protected].

Your contributions will go a long way in helping us fulfill our mission and fund new projects. Please make a generous donation before year-end by going to the Donate page on our website!

Sandhya’s Touch is a 501(c)(3) non-profit organization registered in the State of California. All donations are tax-deductible to the extent allowed by law.

Indian Led Bay Area Nonprofits Respond

The world as we knew it a few weeks ago has been turned on its head by the invasion of the alien virus we call COVID-19.  Normal activity has ceased over much of our globe; for a very large majority, being told to stay in place where they are and off the streets is tantamount to taking away their livelihood – it’s a sentence to starve. Many of our elderly need help to obtain food, medicine, and other essentials. The emotional impact has spared no one.  Mother Earth, it seems, has stopped processing, stopped spinning, and stopped orbiting; she is free-falling through space, trying to escape the bonds of gravity.

In any crisis, our humanity and community spirit take over. People jump in to help in any way they can.  Inventing new and creative solutions. Checking on each other. Making masks. Generating optimism and goodwill. Showing gratitude by banging pots and pans and cheering on the frontline medical workers as they put their own lives on the line to try and save others. Three Bay Area nonprofits exemplify this spirit. 

Sukham is an all-volunteer organization that advocates for healthy aging, living well and being prepared for life’s transitions in the Bay Area.  Under the leadership of one of its members Saroj Pathak, Sukham is pairing seniors with a younger volunteer living in the same area who could assist in shopping for groceries, picking up medicines or run other essential errands on a mutually agreed-upon schedule. They can also be that friendly voice that calls up to check in and say hello. If you or someon you know could use this service, inform Sukham or send them an email to [email protected]. Provide the name, address and phone number of the senior citizen needing assistance.

The Hindu Community Institute (HCI)  is a service-learning organization dedicated to serving the community by integrating contemporary knowledge, technologies and Hindu wisdom and traditions. Under the banner “Community for Immunity,” HCI – led by Board member Gaurav Rastogi – is now offering free daily online sessions for yoga and meditation via Zoom.  If social distancing is getting you down, or you are struggling to deal with self-isolation, do try out these sessions led by seasoned practitioners. Register at https://www.hinduci.org/online-yoga.  Special yoga sessions catering to seniors and kids are also available.

On a more somber note, HCI has prepared a Hindu last rites process checklist to assist those dealing with a death in the family to handle all the formalities in the current COVID-19 environment. They also offer families the option of talking to knowledgeable individuals who can offer guidance and counsel in their time of loss.  The checklist, as well as contact information for counselors, can be found at  https://www.hinduci.org/last-rites.

Indians for Collective Action (ICA) is a Bay Area nonprofit founded in 1968  to support sustainable development in India by partnering with dedicated non-government organizations (NGO’s) and individuals.  A core mission of ICA has been to help victims of natural disasters such as earthquakes, floods, and drought. Now, in response to the COVID-19 crisis, ICA has organized the Forum initiative, a webinar and video-conference series that connects and enables nonprofits, partners, and interested individuals in India and the US to exchange ideas and share best practices as they bring help to India during the COVID-19 pandemic. The Forum is moderated by ICA’s Dr. Anju Sahay who can be reached at [email protected]. In the first webinar late last month, Snehalaya shared their approach to mobilize and distribute food and supplies to the needy slum dwellers and their plan to distribute food packages to 45000 people. Other projects being prioritized by ICA are listed on their website: https://icaonline.org/donation-for-covid-19/. The next webinar with other project leaders sharing their approach to fight COVID-19 is on April 17. 

Let’s support each other and do all we can. Together we can – and will – put these dark days behind us!

Mukund Acharya is a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area established to advocate for healthy aging within the South Asian community. 

In the “Age of the Coronavirus” – A Reflection

I sipped my morning coffee and browsed through the news, social media and emails. Spain declared an emergency and locked down.  The situation was still dire in Italy. Testing was woefully inadequate in the US and published numbers were the tip of the iceberg.  Toilet paper, cleaning supplies and frozen food shelves could not be restocked fast enough in supermarkets and grocery stores across the country to keep up with the wave of panic buying.

Sigh. 

Three other items caught my eye.  

The Times had a heartwarming story about how Italians nationwide – under lockdown to prevent the spread of the coronavirus – took to singing and playing musical instruments from their balconies and rooftops, with “piano chords, trumpet blasts, violin serenades and even the clanging of pots and pans” spilling from people’s homes” to show that they would get past this together, and to thank all the medical personnel on the front lines fighting the spread of the virus.

A good friend in Switzerland sent me a WhatsApp message.  “People have been hoarding toilet paper here,” she said, “empty shelves.” She also forwarded a video (it likely took multiple forwards to get to me) showing a young man in a coffee shop paying for his coffee with single sheets of toilet paper, and the barista asking for one more sheet, as Abba’s classic song plays in the background.  Money, money, money, must be funny, in the rich man’s world.

And then I saw this post on the social networking platform for local communities, Nextdoor:

“I’d like to take a moment to reflect on our current situation by bringing up a quote from the author C.S. Lewis.  It’s from an essay titled “On Living in an Atomic Age”. I’ll let Lewis say what he says best:

‘In one way we think a great deal too much of the atomic bomb. “How are we to live in an atomic age?” I am tempted to reply: “Why, as you would have lived in the sixteenth century when the plague visited London almost every year, or as you would have lived in a Viking age when raiders from Scandinavia might land and cut your throat any night; or indeed, as you are already living in an age of cancer, an age of syphilis, an age of paralysis, an age of air raids, an age of railway accidents, an age of motor accidents.”

In other words, do not let us begin by exaggerating the novelty of our situation…

This is the first point to be made: and the first action to be taken is to pull ourselves together. If we are all going to be destroyed by an atomic bomb, let that bomb when it comes find us doing sensible and human things—praying, working, teaching, reading, listening to music, bathing the children, playing tennis, chatting to our friends over a pint and a game of darts—not huddled together like frightened sheep and thinking about bombs. They may break our bodies (a microbe can do that) but they need not dominate our minds.’

“On Living in an Atomic Age” (1948) in Present Concerns: Journalistic Essays”

Lewis wrote these words 72 years ago.  We must heed his advice today. Let’s not panic. Let’s be sensible. Let’s use common sense. Let’s adopt common courtesy. Let’s pull together towards a common cause.

Carefully follow the simple, sensible advice of healthcare professionals. Wash your hands, Maintain social distance. Stay indoors and avoid contact with others as much as you can. Be prepared to sacrifice some of your needs for the common good.  It’s not just for you. It’s for everyone around you, and for everyone around them.

Together, we will eventually emerge victorious from the “Age of the Coronavirus.”

Mukund Acharya is a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area established to advocate for healthy aging within the South Asian community. 

With gratitude to Joel Filipe for the use of his beautiful photograph from Unsplash.com

Love Your Body: Mitigate Chronic Inflammation

There’s a lot of news these days about the harm inflammation can do to our bodies. This article provides an overview of what you need to know about chronic inflammation, and what you can do about it. 

Let’s review some background. Inflammation is part of our immune-system’s defensive mechanism; a process in which our bodies deploy white-blood cells and other chemicals to protect us from infection or foreign substances such as bacteria and viruses. This response to tissue injury, to other trauma, or to ‘’foreign invaders’’ like pollen, chemicals, microbes or cell damage is  “a force for good.”  Inflammation plays an essential role in healing and controlling infection, it’s key to our very survival.

Three types of inflammation are recognized. The swelling that occurs after an insect bite, or when we sprain a joint are examples of acute inflammation. Symptoms are usually noticeable: redness, swelling, warmth, pain, and sometimes loss of function. It is generally temporary, lasting a few hours to several days as the body responds by increasing blood flow to the damaged area and releases chemicals, antibodies and proteins as part of the healing process. The usual treatment is to rest the injured area, manage pain and other symptoms, and allow natural healing. Mild painkillers could be prescribed. If substantial or complete healing does not occur in three to four days, a doctor should be consulted to determine if other medical intervention is necessary. 

A second, more serious type is chronic inflammation. It’s not as easy to notice or diagnose and can persist for months or even years. The body’s immune response is constantly and repeatedly triggered resulting in cumulative damage, as is the case in rheumatoid arthritis (RA). Chronic, low-level inflammation plays a role in other diseases including type-2 diabetes, heart disease, Alzheimer’s, cancer and depression.  Asthma, sinusitis, lupus and Crohn’s disease are also examples. Systemic inflammation and its relation to autoimmune diseases is not fully understood and is the subject of research and investigation. Continuous inflammation due to infection or cell damage can injure blood vessels, nerves and organs like the kidney, or joints, skin and even the brain – often without you knowing in the absence of pain or other symptoms. Chronic inflammation is not well understood but some root causes are now well known. More on that shortly.

Life-threatening inflammation, also termed Sepsis, is the third kind. Defined as life-threatening organ dysfunction caused by an abnormal physiological response due to an infection, it’s an uncontrolled inflammatory response that is followed by a suppression of the body’s immune system. A severe systemic response can also be triggered by non-infectious causes, as is the case in SIRS (Systemic Inflammatory Response Syndrome), where a patient’s symptoms mimic the response to a serious bacterial infection.  Yet no bacteria are found and the cause of inflammation is unknown. Chemotherapy, some treatments for RA and many medications that suppress the immune system as a side effect can make you more susceptible to life-threatening inflammation.  Early detection and treatment of the underlying cause is the key to overcoming it. Dr. Carl Hauser, a trauma surgeon and immunologist at Harvard Medical School says that inflammatory complications of injury or illness account for about 50% of patients in intensive care units.

Back to systemic chronic inflammation and what we should do for its prevention or mitigation. It impacts our lives more than we realize. If we are overweight, have high cholesterol, hypertension or high blood-sugar levels, we very likely have some level of chronic inflammation. Left unchecked, these conditions promote diseases such as those mentioned above, and the associated disabilities decrease quality of life.  A recent article tells us that chronic inflammation is characterized by persistent increases in small proteins called cytokines throughout the body that are released by the immune system to promote recovery. This upsets the balance between antioxidants (nutrients that minimize free-radical damage) and free radicals (highly reactive compounds that can interfere with normal cell function). Free radicals in the body and environment play a role in many of the diseases mentioned earlier; they can also damage DNA, proteins, and body tissue, thereby accelerating biological aging. The referenced article quotes Professor George Slavich of UCLA:  “Chronic inflammation is involved in not just a few select disorders but a wide variety of very serious physical and mental health conditions … chronic inflammatory diseases are the most significant cause of death in the world today, with more than 50 percent of all deaths being attributable to inflammation-related diseases.” It can contribute to cognitive decline and mental-health disorders by boosting age-related immune-system deterioration. Social isolation, psychological stress, disturbed sleep, chronic infections, physical inactivity, poor diet, obesity and exposure to environmental toxins – air pollutants, hazardous waste products, industrial chemicals and tobacco smoke – all contribute to its increase.  

A blood test for the for the high-sensitivity C-reactive protein (hs-CRP) marker  confirms the presence of systemic inflammation, but it does pinpoint the cause, which could, for example, be infection, an auto-immune disease of some kind, or cardiovascular disease. Physicians have to consider other health conditions and factors, as well as medical and environmental history to identify the source.

Experts agree that a healthy diet is one key factor to reduce our risk for chronic inflammation and improve immune health. In addition, they emphasize the importance of lifestyle changes: maintain healthy body weight, improving sleep, exercising regularly, quitting smoking, and finding ways to decrease stress and exposure to environmental pollutants. Heart-healthy diets (such as DASH and MIND) come highly recommended. Foods that fight inflammation include olive oil, tomatoes, walnuts, almonds, spinach, kale, salmon, mackerel, blueberries, oranges, ginger and turmeric.

You are now armed with the knowledge to take your next steps and create your roadmap to combat chronic inflammation. Consult your doctor, and make the lifestyle changes for a better tomorrow!

Sukham Blog – This is a monthly column focused on health and wellbeing. 

Mukund Acharya is a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area established to advocate for healthy aging within the South Asian community. To find out more, visit https://www.sukham.org, or contact the author at [email protected].  

With sincere thanks to Hal Gatewood at Unsplash for the use of his beautiful photograph.

Building Resilience

In this fast-paced society, we are increasingly stressed for longer periods of time. Dr. Sanjay Gupta – neurosurgeon and Chief Medical Correspondent for CNN – describes an epidemic of chronic stress in the HBO documentary “One Nation Under Stress, with 8 in 10 Americans experiencing stress daily. Stanford neuroscientist Dr. Robert Sapolsky explains that while stress response originally evolved as a life-saving and coping mechanism to deal with external threats or dangers, we now generate stress responses to non-life-threatening situations including interpersonal conflict, deadlines, health concerns, jobs and finances. The United States of Stress 2019 reports that chronic stress affects people of all gender and ages, particularly younger people, exacting a stunningly toxic toll on the body, brain, mind, and soul. Its ongoing assault wears us down, measurably aging — or “weathering” — our insides, for some of us much more than others. Chronic stress zaps brainpower by damaging neural pathways and skewing judgment. It compromises the immune system. It taxes the heart, kidneys, liver, and brain. Multiple studies show that high stress adversely impacts physical and mental health leading to higher levels of chronic pain, addiction and suicide. Learning to deal with stress can be a powerful addition to our personal-wellbeing arsenal.  

The American Psychological Association defines Resilience as the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress … It means “bouncing back” from difficult experiences. This article explores the relationship between stress and how your brain functions, and simple techniques to “bounce back” to – to build Resilience.  

Dr. Amit Sood tells us how. As a physician and professor of medicine at Mayo Clinic he created their Resilient Mind Program. Now executive director of the Global Center for Resiliency and Well-Being, he’s an internationally recognized expert on proven resilience techniques. “Cognitive and emotional loads we carry have increased progressively over the past two decades” he says; our brains possess a finite ability to lift these loads and get overloaded, “just as our ancestors’ backs were when manual labor was predominant.” This excessive load decreases quality of life, so we have to find ways to increase our lifting capacity if we don’t have ways to reduce it. “Resilience is our capacity – the core strength – to lift the load of life,” he says. It has several components: physical, spiritual, cognitive and emotional. Cognitive resilience relates to the amount a person can remember and handle, while emotional resilience measures the amount of negative emotion one can manage before getting stressed. Research led by Dr. Sood and several others shows that higher resilience correlates with better emotional and physical health, better relationships, success at work and the ability to handle adversity and grow despite downturns.

Our body hosts resilience in the brain and heart, our two main active organs. Heart health impacts physical resilience while cognitive, emotional and spiritual resilience are centered in the brain. “We understand how exercise, diet, sleep and sometimes medications keep the heart healthy and strong,” Dr. Sood explains, “with recent advances in neuroscience we are just learning that how the brain operates is critical to cultivating resilience.”

The evolution of the human brain has given it some operational vulnerabilities which predispose us to chronic illness and premature death. These can be traced back to the instinctive suspicion about everything around them that our ancestors developed in a quest for survival. Suspicion was their means to deploy attention, and is the genesis of our negativity bias today. Their need to constantly scan their environment for external threats has led to our wandering, jumpy attention. Although we have since collectively created a completely different world where the cause of death has shifted from external injury to heart disease and cancer, these brain vulnerabilities persist. Dr. Sood points out that while our brains tire after 90 minutes of cognitive work, we work 12-14-hour days, enabling emotional and cognitive vulnerabilities to manifest and influence our actions. “Nature gives us ‘baseline’ brains and hearts, and we have to keep ‘upgrading’ them through training,” he says, “resilience boils down to becoming aware of how our brain operates – particularly its vulnerabilities – and learning how to overcome them.”  

How can you do this? Dr. Sood has developed a structured approach in the Resilient Option. At its core is an integrated three-step process to develop awareness, attention and attitude (positive mindset). First, become aware of the brain’s vulnerabilities and take charge to train its attention and attitude. Second, develop an intentional attention that is strong, focused and immersive. Third, cultivate a resilient mindset or attitude through practices that best resonate with you such as meditation, prayer, music, or working out. This approach enables you to view your world in a broad context instead of a short-term one that could frighten or stress you. The resilient mindset is built around five guiding principles: gratitude, compassion, acceptance, meaning and forgiveness that reframe your perspective, integrating teachings of several disciplines including psychology, cosmology, spirituality to develop your unique model of self, life and fulfilment. You start by assigning one day in the week to each principle, and develop short specific practices that are emotion- and relationship-centric. Short practices are key for success – Dr. Sood refers to the ‘two-minute rule.’ We all struggle to sustain lengthy practices because of inherent weak attention and the tugs and pulls of our daily lives. In time, you integrate the three steps and five practices into your daily life, pre-emptively experience more joy by the practice of gratitude and compassion, and recover quickly from negative experiences or moments of negative emotion because you are able to more easily find gratitude or compassion through that experience and have learned to accept, find meaning and forgive. You live a life of your choosing, and are not reactive but responsive and intentional. Your energy increases and you develop better relationships. Fifteen years of research and over 30 clinical trials have proven that this approach is easy and powerful, enabling positive changes with little time investment. Find out how resilient you are.  Get your resiliency score, and start building it with these tips from Dr. Sood.

With sincere thanks to Simon Matzinger at Unsplash for the use of his beautiful photograph.

Sukham Blog – This is a monthly column focused on health and wellbeing.  

Mukund Acharya is a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area established to advocate for healthy aging within the South Asian community.  Sukham provides information, and access to resources on matters related to health and well-being, aging, life’s transitions including serious illness, palliative and hospice care, death in the family and bereavement. If you feel overcome by a crisis and are overwhelmed by Google searches, Sukham can provide curated resource help. To find out more, visit https://www.sukham.org, or contact the author at [email protected].  

 

Choosing a Good Death

Arjan Tolani died peacefully on July 15, 2019, with his wife next to him and his son Sunil holding his hand. Shabad Gurbani, a sacred hymn of Guru Granth Sahib – the principal scripture of Sikhism – played gently in the background. Mr. Tolani lived a full, noble life and died peacefully and in comfort in hospice at home. His family was also at peace knowing this was what he wanted, and that they had provided all the care, love and comfort for him in his last days. He was 82.

Mr. Tolani never fully recovered from an infection he contracted sixteen months prior to his death. He progressively declined in spite of the excellent care he received from hospitals, doctors, nurses, and therapists. “We – his family – knew his wishes for medical treatment and end of life,” Sunil Tolani told me, “and the doctors and nurses treated us as peers, partners, confidants, and most importantly, as our Dad’s voice. Dad was at peace and in comfort knowing we were his safe haven. His being in hospice at home meant peace, love, and complete care.” Sunil paused, remembering, “a week before Father’s Day, Dad smiled weakly as I gave him a few teaspoons of tea while praying he would be with me for one more Father’s Day. We are smiling today, secure in the knowledge that we did our best for Dad, and he knew that.” I asked Sunil how the decision was made for his father to transition from curative to hospice care. “The family decided,” he responded, “we had all talked about it.”

Death touches us all. However, most people find end-of-life discussions uncomfortable. A 2012 California Health Care Foundation survey on communicating end-of-life wishes showed 56% of those polled had not discussed their preferences with the ones they would want to make decisions on their behalf. Two out of three Asians had not done so. When asked why, the four most common answers were “I have too many things to worry about right now,” “I don’t want to think about death and dying,” “my loved one does not want to talk about death,” and “it’s a long way off.” Only 38% of respondents had heard of an Advance Directive. A mere 4% of all 2010 deaths in hospice care were Asian.

Why do Indians and South Asians find end-of-life conversations especially difficult? It’s not that we don’t want “a good death.” Sunil Tolani describes us as a “prosperous, intelligent, educated but superstitious community.” Dr. Neelu Mehra, Chief of Palliative Care at Kaiser Permanente in Redwood City, says the Indian community in general believes talking about death will make it happen sooner. “It’s an ominous sign,” she says, “that’s one of the reasons they do not want to fill out Advance Directives or talk about future planning.” Consequently, Indians are often ill-prepared and traumatized when thrust into making difficult medical decisions. “I know many adult Indian Americans, who have elderly parents come to live with them and they find that they cannot raise this topic because it’s a taboo to talk about death,” she adds This can leave doctors frustrated and unable to meaningfully discuss medical options with patients and families. Many are used to being told by doctors in India what to do and unable to respond when asked to make decisions. Some suspect doctors of withholding information or not telling the whole story. “Getting Indian families to agree to end-of-life discussions can be a monumental task,” Dr. Mehra says, “we Indians are very comfortable accepting what comes our way. We accept death when it comes; that’s black and white. However, we are very uncomfortable with the shades of gray in between; we don’t know how to make difficult choices, and don’t know how to support loved ones so they do not suffer. We are hesitant to learn about and make choices that could alleviate suffering.”

Dr. VJ Periyakoil’s course on Health and Healthcare of Asian Indian American Adults – part of Stanford University School of Medicine’s Ethnogeriatrics Program – sheds further light on complexities that shape attitudes of traditional Asian Indian families: Many have a hierarchy of decision-makers, usually beginning with the oldest son as the primary contact and disseminator of information. Families may be reluctant to discuss personal and emotional issues with health-care providers, because these are considered very private and traditionally not shared with anyone other than those in the immediate household. Some families may request that the physician withhold information from their loved one who is ill, concerned that the truth about the illness may negate the will to live. Thus, “Doctor saab, please don’t tell Dada-ji that he has cancer. He will just give up and die,” may not be an uncommon request from a Hindu American family. Despite complete understanding of biological causes of illness, it is often believed that the illness is caused by Karma, the law of behavior and consequences in which actions of past life affect the circumstances in which one is born and lives in this life. Physicians may be perceived as incompetent if they sound unsure, or ask the patient or family member for their opinion. Some studies have shown an inverse relationship between the strength of religious and traditional beliefs and the presence of a completed advance care directive. Susan Thrane also points to major beliefs of Hindus, including family and community interconnectedness, Karma, and reincarnation as drivers of attitudes and behaviors.

Dr. Mehra urges us as a community to “have more upstream conversations about end of life,” and get people to understand that in some instances more treatment is not necessarily better; that choices have to be made, so that when the time comes to make decisions, “they won’t find themselves in a firefighting mode. We have a huge opportunity to build awareness and educate South Asians around this issue and overcome the attitudinal barrier that says, ‘I don’t want to talk about it; talking about it means that I’m going to die sooner.’ Having a fire extinguisher at home doesn’t mean that your house will burn down,” she says, “it just means that you are better prepared! You know what to do, and you have the tools to do it.” Ellen Goodman the Pulitzer Prize winning journalist and co-founder of The Conversation Project sums up the impact of putting off advance-care planning this way: “It’s always too soon until it’s too late!”

 “The tipping point for me was when my father-in-law unexpectedly fell ill and went into a coma,” a friend of mine recently confided. “My husband and I were anguished over making very difficult decisions about his medical care because he had never told us what he wanted. The very next week, I sat down with my own parents and told them we had to have this conversation. I never want to be in this position again!” Dr. Nicholas Jauregui, the Palliative Care specialist who cared for Arjan Tolani spoke at his memorial service. ““Often families have a very difficult time making the transition from trying to fix all the medical problems that the patient has to acceptancing  that medical technology cannot fix them. This requires them to focus instead on what good can be done: allowing the patient to have a high quality of life at home in their last days.”  

Arjan Tolani’s last living act – dying – is his undying gift to the rest of us: a gentle reminder that we too need to think about and plan for the end of our lives. Decide what you want for yourself at the end of your life, share this with your family and loved ones, and fill out an Advance Directive. In the words of Lucy Kalanithi, doing this is “a really soulful thing and an act of love.”

With sincere thanks to Carlos Quintero at Unsplash for the use of his beautiful photograph.

Sukham Blog – This is a monthly column focused on health and wellbeing.  

Mukund Acharya is a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area established to advocate for healthy aging within the South-Asian community.  Sukham provides information, and access to resources on matters related to health and well-being, aging, life’s transitions including serious illness, palliative and hospice care, death in the family and bereavement. If you feel overcome by a crisis and are overwhelmed by Google searches, Sukham can provide curated resource help. To find out more, visit https://www.sukham.org, or contact the author at [email protected].