Tag Archives: dementia

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 sukhaminfo@gmail.com

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


 

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 sukhaminfo@gmail.com


 

Kanti Patel and Jaya Mehta celebrating Independence Day at ICC (Image provided by ICC-Milpitas)

Hey Naani-Ma, Put On Your Dancing Shoes. It’s Good For Your Brain!

In a packed hall on one Sunday evening at the India Community Center-Milpitas here in the heart of Silicon Valley, South Asian folks of all ages sit in their traditional outfits and wildly cheer the naanis and naanas on the stage as they do an energetic “Jollywood” dance number to the song, Dus Bahane.

Naani-ma Pushpanjali Gangishetti, 74, in a bright sari, matching jewelry and barefooted, shakes her hips with gusto, one arm bent seductively behind her head, the other extended in the air in front of her, a broad smile on her face. 

She clearly looked like she was enjoying the spotlight provided at the India Community Center’s (ICC) annual fund-raising gala. Ditto for at least a dozen other seniors who shared the stage with her, the men wearing fancy kurta-pyjamas, the women in sequined outfits, which anyone could see were tailored for the young at heart.

To an onlooker, it’s obvious why they call themselves the “Jollywood dancers.”

“I never thought that slipping into our dancing shoes and moving our legs would bring about such a change in us,” said 78-year-old Kanti Patel on a recent day, recalling that evening, as well as the continuing weekly dance sessions at the ICC. 

He said he and his wife, Champa, have been taking full advantage of all the cultural activities the ICC offers seniors – singing, dancing, mono acting, doing yoga, aerobics, playing bridge, or simply shooting the breeze with their peers. “What we do here are wonderful stress busters.”

Indeed, it has been long documented that physical activity, especially dancing and singing, can positively affect elderly people’s bodies and minds, leading to better cardiovascular health, fewer migraine headaches, and a sharper brain.

“Music and dance create new networks in the brain,” explained India-born neurologist Dr. Joe Verghese, lead author of a continuing study on aging at the Albert Einstein College of Medicine in New York. 

The study explored how dance and music slowed down cognitive decline in older people. It found that dancing helps prevent both Alzheimer’s disease and vascular dementia, the next most common form of dementia after Alzheimer’s. 

Turns out, “all activities related to music can be beneficial to people,” noted Sarah Lenz Lock, AARP’s Senior Vice President for Policy and Brain Health, and Executive Director of the Global Council on Brain Health (GCBH). Engaging in music “is a powerful way to stimulate your brain.”

Lock, a panelist at the 2020 Gerontological Society of America’s (GSA) Annual Scientific Meeting last November, shared those findings with 15 journalists who had won fellowships from GSA’s 2020 Journalist Network on Aging program. 

The meeting was held online because of the COVID pandemic.

She cited recent findings by the GCBH that showed that music impacts all regions of the brain and causes them to work together. It releases dopamine, an important brain chemical that influences one’s mood and feelings of reward and motivation. And the music that’s “meaningful to the individual is likely to have a greater dopamine response,” she said. 

Lock said 20 to 40 percent of dementia could be reduced or delayed through changing modifiable lifestyle factors. Music can encourage healthy behaviors that can reduce your risk of dementia. So what kind of music should seniors, who had perhaps previously largely limited themselves to bathroom singing, or not sung at all, engage in?

“It’s all about individual choices and preferences,” Lock said, noting, “Any style or type of music can be beneficial for the brain.”

According to the GCBH report, there is evidence to suggest that music that is meaningful to the individual is likely to cause the strongest brain response and dopamine release, while at the same time new music can stimulate the brain and provide a new source of pleasure.

A 90-year-old woman (whose family did not want her to be identified) stricken with dementia had started showing little interest in her surroundings and sometimes even in family members who visited her. But whenever she heard her favorite songs of yesteryears, she would quickly brighten up, said a relative.

People who use music to connect with people understand why that medium is so important for people like this woman. Linda McNair, a board-certified music therapist at a senior facility in Missouri, is quoted as saying that when people with dementia engage with music, “they don’t dwell on other anxieties.”

Of the 11 different physical activities the Einstein team studied, social dance was the only one associated with less dementia risk – possibly because it is a complex activity. It demands sustained mental effort to master new steps. 

That meant, it is not a one-and-done thing. “It has to be ongoing therapy,” Lock said.

Among the people who participated in the Einstein aging study, those who danced frequently – three or four times a week– showed 76 percent less incidence of dementia than those who danced only once a week.

Many people who dread exercising are more likely to use dancing as a way of overall physical improvement. While most exercises tend to use repetitive motions that may be found boring, dancing uses a wide variety of movements and has the additional advantage of social interaction with different people, Verghese said. As a result, it can provide greater self-confidence and self-esteem, enhance a general sense of wellbeing, and lead to more active social relationships.

Verghese, who is in his 50s, confessed he’s no fan of exercise, perhaps because of its repetitive motions.  Ballroom dancing, on the other hand, with its wide variety of movements, is something he has embraced. It has helped his overall physical wellbeing, he said. 

Music beneficial for Parkinson’s Disease

Neurologists say that music and dance can benefit the gait and balance of people with Parkinson’s disease and slow its march, possibly because they stimulate the production of dopamine and serotonin, neurotransmitters that are reduced in people with the disease. Singing uses the same muscle groups for swallowing and breathing, functions that are impacted as the disease advances.

After being diagnosed with the early stages of Parkinson’s a couple of years ago, a middle-aged techie in the Silicon Valley, who wished to remain anonymous, has become even more serious about learning Carnatic music, with its high-speed variations of pitch, unity of raga and tala, all of which he believes have helped slow down the advancement of the disease. 

Verghese said the social and emotional elements of dancing and music are especially beneficial for Indian American seniors, particularly those who have migrated to the United States in their later years. For many of them, cultural and language barriers, as well as lack of mobility, have limited their social interactions in their adoptive countries. 

 

Earlier Indian festival celebrations at ICC-West Valley: People from left to right - Smita Sane (Orange), Sumitra Kapoor (Blue Sari), Romila Ghai (Red and Blue), Swatantra Dhawan (Yellow)
Earlier Indian festival celebrations at ICC-West Valley: People from left to right – Smita Sane (Orange), Sumitra Kapoor (Blue Sari), Romila Ghai (Red and Blue), Swatantra Dhawan (Yellow); (Image provided by ICC)

 

That does not mean that while living in India they all had the mental stimulation older people need to keep their brains from cognitive decline, noted Sunitha Ramakrishnan, who manages the senior programs at the Mid-Peninsula chapter of the ICC. 

“There is no way older people in India could do all the activities they so freely do here” without inviting criticism from their friends and family members, said Ramakrishnan, adding, “Singing perhaps yes, but dancing no.”

Shakuntala Saini, a widow of eight years, echoed this view. “In India, if I said I’m 78, people will simply say, ‘It’s time for you to go.’ ”

The ICC has a total of 600 senior members in its four centers – located in Milpitas, Cupertino, Mid-Peninsula, and Tri-Valley. The average age of the members is 70. Some drive themselves to the centers, others get dropped off at the center by family members, and some others use county-funded car services for a nominal cost of $2 per ride. 

The COVID lockdown has not stopped them from accessing the social activities they enjoyed prior to the stay-at-home orders, noted ICC’s chief executive officer Raj Desai. As the lockdown began, ICC volunteers gave them a Zoom 101 course and they were off and running.

“In fact, there is more attendance in the classes now” than before the lockdown, noted Ramakrishnan.

On a recent day, Sunaina Jain, in her late 60s, was at a Zoom practice session with 27 other seniors at the class taught by Bollywood dance teacher Neetu Arora of the Mona Khan Dance Company.

“Come on Sunaina Aunty, arms down, hip-hip,” Arora coaxes, demonstrating what needed to be done. In Bollywood dance, she tells the students, “arm angles are really important.”

It’s Christmas Eve at the ICC and once again the stage is awash with colorful lehenga-cholis, salwar kameezes, and saris. The seniors are strutting their stuff through music and dance. 

All of them hid the little aches and pains that come with advancing years. There was Indu Chabbra, 70, a widow and legally blind, doing her thing in a lehenga-choli. 

Gangishetti, a widow of two years, is determined not to let her artificial knees keep her from having a blast. 

“They tell me that dancing has given them a sense of accomplishment and built up their confidence,” said Ishika Seth, who is a professional dancer from the Mona Khan Dance Company and has been volunteering at the ICC for the last 10 years.


Viji Sundaram wrote this article for India Currents with the support of a journalism fellowship from The Gerontological Society of America, Journalists Network on Generations, and the Silver Century Foundation


 

Smile, Please!

Yesterday was the second time in my life I cried at the movies (the first was when I watched On Golden Pond at the Chanakya Cinema in Delhi, at the age of 22). Despite some obvious flaws, ‘Smile, Please’ had the honor of squeezing the saline out of my eyes, which are usually unfazed by Bollywood’s tear-jerking tricks and sentimental shenanigans.

Smile Please tackles the heavy, hard subject of dementia (in this case, the rare early onset kind); however, like any Bollywood movie worth its salt, it multitasks heavily on the emotional front. We get a variety of engaging sub-plots stirred into the mix including family dynamics, the tradeoff between a career and family for ambitious Indian women, and the evolving relationship between divorced parents as they share parenting.

To director Vikram Phadnis credit, these themes add to the rich background tapestry of the movie, without overshadowing the overarching theme of dementia in a young woman.

Dementia could easily be crowned the Queen of The Most Horrible Diseases that Afflict Mankind. It robs individuals of their memories, and of everything that makes them human and connects them to other human beings. Apart from memories, basic learned associations, personality traits and the core of what makes up an individual’s identity, slowly dissolves into the merciless acid of this disease, which leaves a functioning shell of a person who may not even remember their own name.

Smile Please is a spin off from the accomplished 2014 movie, Still Alice, where Juliane Moore stars as a 50-year-old linguistics professor who is diagnosed with early onset Alzheimer’s (a form of dementia). Still Alice depicts the sudden devastation in Alice’s life as the person she has been is stripped away, and the movie gives a sensitive portrayal of how the disease sucks her entire family into its black hole.

In Smile Please we see a woman at the height of her career. Nandini Joshi (played by Mukta Barve), is shown conducting a high fashion photo shoot in the opening scene. She’s the divorced mom of a 13-year-old girl, Nupur (Vedashree Mahajan) and lives with her elderly father in an affluent, old world, Bombay neighborhood.

Her daughter (whose custody was surprisingly awarded to Nandini’s ex-husband) hates Nandini, but comes to visit her grandfather. This backstory could have been a movie in itself; however, we, the viewers, come late to the relationship between Nandini and her ex-husband. What we see is an enlightened, 21st century dynamic between the couple, a mature and accommodative affection, where Nandini’s ex-husband (Prasad Oak) tries to persuade Nupur to give her mother a chance. Those layers of civility will be lifted later in the movie to reveal darker corners in their marriage.

We begin to get clues that all is not well with Nandini right from the start – she forgets small things and misses appointments and then, one day, forgets what she’s saying during an official presentation. This scene was a complete knock-off from Still Alice; in the Juliane Moore version, Alice forgets the next word when she is teaching a linguistics class. I felt the director could have shown more originality here.

When her tests are done by a doctor who is Nandini’s old college friend, results show that she’s well into the first stage of dementia. We see the family struggling to cope with this new reality as Nandini goes through some typical stages of shock, denial and gradual acceptance.

Here, the movie diverges from Still Alice, but does so in typical Bollywood fashion. Enter, the family’s guardian angel in the form of a young man, Viraj (Lalit Prabhakar), who is a house guest. He fills in the empathy holes the family has left and ends up being everyone’s selfless savior. Remember, Kal Ho Na Ho, and Shahrukh Khan’s guardian angel?  Bollywood scriptwriters seem to find the sexy- heroic stranger- rescuing- the- hapless- family trope quite irresistible.

Lalit Prabhakar and Mukta Bharve in Smile Please

Viraj’s magical appearance seems contrived at first, but director Vikram Phadnis skillfully weaves the newcomer into the narrative, in a series of authentic scenes. He also brings out the compassion and the helpless agony of the family without making the film sit too heavily on the audience. The team of actors he picked are quite accomplished, and do a superb job of conveying the subtle horror and helplessness of the disease.

And, though the tears did flow, my rational brain felt mildly disappointed at the fact that the movie doesn’t get intimately into the changes in Nandini’s emotions, and her fear of the future, as she grapples with the disease. She seems curiously passive to her fate throughout, while there is more emphasis on the savior-hero and on family dynamics.  We also don’t see the desperation of extremes in this movie, except for a scene where Nandini comes to a party for her daughter’s birthday in a bathrobe. In contrast, Still Alice had a powerful scene where the character plans her own suicide because she wants to die with dignity, on her own terms, not as a babbling, uncomprehending husk who is a burden to her family.

This is a movie which should be seen on a quiet evening with a glass of wine, when you are in a mood for the cathartic, melancholy sadness it will evoke. It brings out our very human mortality, as well as our stoic resilience in the face of heartless destiny, and deserves 3 stars.


Jyoti Minocha is an DC-based educator and writer who holds a Masters in Creative Writing from Johns Hopkins, and is working on a novel about the Partition.

Edited by Meera Kymal, contributing editor at India Currents

Teenagers Use Technology to Fight Dementia

Brainy Haven is a nonprofit created by high school students from Huron High School in Ann Arbor, Michigan. Its founders, Raayan Brar, Darron King, and Siddharth Jha, worked collaboratively on the initiative after realizing the lack of online resources for not just the elderly, but specifically those with dementia-related illnesses.

“In the modern world we live in, using technology to better those around us is our obligation,” says Jha. “At Brainy Haven, our team hopes to serve those with dementia-related illness by aiding their process, which can be terrifying for many families.”

Brainy Haven aims to assist those with memory through the use of technological resources. Their website contains an assortment of puzzles and brain teasers for dementia patients to use, ranging from patterns to a fully functional memory game. Having already sent it out to many nursing homes, the team at Brainy Haven has received positive feedback from users.

However, wanting to do more, the three contacted a team at the University of Michigan Alzheimer’s Disease Center to receive feedback on structure and implementation. “I had known the Alzheimer’s Center’s Director, Dr. Henry Paulson, from past events so it seemed like he’d be the perfect person to reach out to for help,” King explained, “Dr. Paulson kindly introduced us to a group of people with diverse skill sets working at the Center and they gave us some detailed, brilliant feedback.”

In addition to Brainy Haven’s carefully crafted program, users can find important information regarding dementia-related illnesses and their impact on the brain. The team was astonished to see the sheer number of people affected by dementia and they hope that through Brainy Haven, those who are lucky enough to not have been afflicted with dementia can take a few moments to educate themselves on what dementia really is and its effects on their communities.

Brar remembers reading an article from the Hindustan Times and being shocked at how many Indians that are personally affected by this devastating issue.  “Helping the community during difficult times is an amazing thing to do,” Brar says, “I have always wanted to better society, and what we did is something so simple, but I do believe that it can help the lives of our seniors.” The trio is proud of the work that they had done, and now they want teenagers all around the world to do something similar and help benefit their community in some small way.

Sticking to their roots in India, Jha and Brar plan on sending out customized programs to homes in India. Both having had family affected by dementia-related illnesses, the two are aiming to help those suffering in their ancestral lands. “After talking to family members and visiting India numerous times as I child, I hope to be able to give back to the people of Bihar and others who have not been blessed with the same opportunities as myself,” says Jha. “Brainy Haven is the first step to accomplishing that goal.”


Siddharth Jha hopes to change the world and solve global problems through management and technology. When he is not coding, Sid can often be found playing a game of chess or partaking in any other strategic activity.

Raayan Brar passion in life comes from the joy of teaching others and helping the community. As a teacher at various student programs, Raayan knows and enjoys the true value of critical thinking.

Darron King is planning to pursue a career in the field of neuroscience and psychology in his future endeavors. He is interested in learning about the endless capabilities of the human brain and is excited about the future of neurology.

The New Digital World Can Give Seniors A Hard Time

Family gatherings on Zoom and FaceTime. Online orders from grocery stores and pharmacies. Telehealth appointments with physicians.

These have been lifesavers for many older adults staying at home during the coronavirus pandemic. But an unprecedented shift to virtual interactions has a downside: Large numbers of seniors are unable to participate.

Among them are older adults with dementia (14% of those 71 and older), hearing loss (nearly two-thirds of those 70 and older) and impaired vision (13.5% of those 65 and older), who can have a hard time using digital devices and programs designed without their needs in mind. (Think small icons, difficult-to-read typefaces, inadequate captioning among the hurdles.)

Many older adults with limited financial resources also may not be able to afford devices or the associated internet service fees. (Half of seniors living alone and 23% of those in two-person households are unable to afford basic necessities.) Others are not adept at using technology and lack the assistance to learn.

During the pandemic, which has hit older adults especially hard, this divide between technology “haves” and “have-nots” has serious consequences.

Older adults in the “haves” group have more access to virtual social interactions and telehealth services, and more opportunities to secure essential supplies online. Meanwhile, the “have-nots” are at greater risk of social isolation, forgoing medical care and being without food or other necessary items.

Dr. Charlotte Yeh, chief medical officer for AARP Services, observed difficulties associated with technology this year when trying to remotely teach her 92-year-old father how to use an iPhone. She lives in Boston; her father lives in Pittsburgh.

Yeh’s mother had always handled communication for the couple, but she was in a nursing home after being hospitalized for pneumonia. Because of the pandemic, the home had closed to visitors. To talk to her and other family members, Yeh’s father had to resort to technology.

But various impairments got in the way: Yeh’s father is blind in one eye, with severe hearing loss and a cochlear implant, and he had trouble hearing conversations over the iPhone. And it was more difficult than Yeh expected to find an easy-to-use iPhone app that accurately translates speech into captions.

Often, family members would try to arrange Zoom meetings. For these, Yeh’s father used a computer but still had problems because he could not read the very small captions on Zoom. A tech-savvy granddaughter solved that problem by connecting a tablet with a separate transcription program.

When Yeh’s mother, who was 90, came home in early April, physicians treating her for metastatic lung cancer wanted to arrange telehealth visits. But this could not occur via cellphone (the screen was too small) or her computer (too hard to move it around). Physicians could examine lesions around the older woman’s mouth only when a tablet was held at just the right angle, with a phone’s flashlight aimed at it for extra light.

“It was like a three-ring circus,” Yeh said. Her family had the resources needed to solve these problems; many do not, she noted. Yeh’s mother passed away in July; her father is now living alone, making him more dependent on technology than ever.

When SCAN Health Plan, a Medicare Advantage plan with 215,000 members in California, surveyed its most vulnerable members after the pandemic hit, it discovered that about one-third did not have access to the technology needed for a telehealth appointment. The Centers for Medicare & Medicaid Services had expanded the use of telehealth in March.

Other barriers also stood in the way of serving SCAN’s members remotely. Many people needed translation services, which are difficult to arrange for telehealth visits. “We realized language barriers are a big thing,” said Eve Gelb, SCAN’s senior vice president of health care services.

Nearly 40% of the plan’s members have vision issues that interfere with their ability to use digital devices; 28% have a clinically significant hearing impairment.

“We need to target interventions to help these people,” Gelb said. SCAN is considering sending community health workers into the homes of vulnerable members to help them conduct telehealth visits. Also, it may give members easy-to-use devices, with essential functions already set up, to keep at home, Gelb said.

Landmark Health serves a highly vulnerable group of 42,000 people in 14 states, bringing services into patients’ homes. Its average patient is nearly 80 years old, with eight medical conditions. After the first few weeks of the pandemic, Landmark halted in-person visits to homes because personal protective equipment, or PPE, was in short supply.

Instead, Landmark tried to deliver care remotely. It soon discovered that fewer than 25% of patients had appropriate technology and knew how to use it, according to Nick Loporcaro, the chief executive officer. “Telehealth is not the panacea, especially for this population,” he said.

Landmark plans to experiment with what he calls “facilitated telehealth”: nonmedical staff members bringing devices to patients’ homes and managing telehealth visits. (It now has enough PPE to make this possible.) And it, too, is looking at technology that it can give to members.

One alternative gaining attention is GrandPad, a tablet loaded with senior-friendly apps designed for adults 75 and older. In July, the National PACE Association, whose members run programs providing comprehensive services to frail seniors who live at home, announced a partnership with GrandPad to encourage adoption of this technology.

“Everyone is scrambling to move to this new remote care model and looking for options,” said Scott Lien, co-founder and chief executive officer of the company, which is headquartered in Orange County, California.

PACE Southeast Michigan purchased 125 GrandPads for highly vulnerable members after closing five centers in March where seniors receive services. The devices have been “remarkably successful” in facilitating video-streamed social and telehealth interactions and allowing nurses and social workers to address emerging needs, said Roger Anderson, senior director of operational support and innovation.

Another alternative is technology from iN2L (an acronym for It’s Never Too Late), a company that specializes in serving people with dementia. In Florida, under a new program sponsored by the state’s Department of Elder Affairs, iN2L tablets loaded with dementia-specific content have been distributed to 300 nursing homes and assisted living centers.

The goal is to help seniors with cognitive impairment connect virtually with friends and family and engage in online activities that ease social isolation, said Sam Fazio, senior director of quality care and psychosocial research at the Alzheimer’s Association, a partner in the effort. But because of budget constraints, only two tablets are being sent to each long-term care community.

Families report it can be difficult to schedule adequate time with loved ones when only a few devices are available. This happened to Maitely Weismann’s 77-year-old mother after she moved into a short-staffed Los Angeles memory care facility in March. After seeing how hard it was to connect, Weismann, who lives in Los Angeles, gave her mother an iPad and hired an aide to ensure that mother and daughter were able to talk each night.

Without the aide’s assistance, Weismann’s mother would end up accidentally pausing the video or turning off the device. “She probably wanted to reach out and touch me, and when she touched the screen it would go blank and she’d panic,” Weismann said.

What’s needed going forward? Laurie Orlov, founder of the blog Aging in Place Technology Watch, said nursing homes, assisted living centers and senior communities need to install communitywide Wi-Fi services — something that many lack.

“We need to enable Zoom get-togethers. We need the ability to put voice technology in individual rooms, so people can access Amazon Alexa or Google products,” she said. “We need more group activities that enable multiple residents to communicate with each other virtually. And we need vendors to bundle connectivity, devices, training and service in packages designed for older adults.”

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Ask a Lawyer – When Aging Parents Need Help With Legal Affairs

If you immigrated to America and have aging parents in India, you are facing a common dilemma – how to help parents who are increasingly unable to manage their own affairs. These complicated situations could happen unexpectedly, so be prepared in advance to face questions like these:

How do I manage the property or assets of an elderly parent impaired by illness, typically, stroke or dementia?

How do I arrange funds for healthcare? I find it difficult to transfer money between India and the U.S.

What do I do about making critical healthcare decisions like putting my parents on a ventilator or proceeding with surgery ?

What You Need to Do in India

Create a Joint Account

  •  Ensure that all bank accounts and other property holdings of your parents are joint, with the ability to sign in a “either or survivor” capacity. This also applies to safety deposit boxes. 
  • Frequently, these are held jointly by two parents to begin with, and then become singly-held upon one of them passing. It is helpful to have an additional holder who is fully functional at all times.

Establish Nominees and Power of Attorney

  • Appoint a nominee for each account, so that someone can access the accounts if the main account holder passes away.
  • Prepare a power of attorney and if possible submit it with the bank. This will allow the person with the power of attorney to operate the accounts, investments or safety deposit boxes.
  • Check with the bank to find out if they accept a power of attorney for the account in question what language needs to be used.
  • Ensure that there is a general power of attorney allowing someone to handle the parent’s affairs, including matters relating to real estate (which may require specific power of attorney – please check with a lawyer).  This way, sales of houses and other property are easier to manage.
  • Banks in India have their own rules and restrictions about who can be a signatory, or nominee or a power of attorney holder on an account, so consult with senior bankers or finance planners.

Prepare a ‘Valid’ Will and a Living Will

  • Make sure that there is a valid will which clarifies the property division. Also, investigate the possibility of having a “living will” which specifies the person’s wishes in terms of their health care.

Keep Visas Current

  • Ensure that the parent living in India has a valid visa to travel to the United States should the need arise.  
  • More importantly, make sure that you, a US resident, who might have to travel to India suddenly, have a valid visa at all times. 
  • If you have recently obtained US citizenship, please apply for an Indian visa on an expedited basis.

Access to Cash Flow

  • Ensure that there is access to cash flow, since Indian hospitals often need significant advance payments. 
  • Check with your banks here in the US and in India about money transfers and ensure you have processes in place should the need arise. 

Tax Implications

  • There may be tax implications in the US with having your name on bank accounts or other investments in India. You may be required to file tax returns in India. Please talk to a tax advisor or accountant in both places.
  • It’s good practice to consult with a lawyer, especially with respect to estate planning and wills.
  • In certain circumstances, it may make sense to get advice from estate planning experts, both in India and in the US. Tax considerations and implications on cross border assets can be complex and extensive.

 

What You Need to Do in the U.S.

Bank Accounts

  •  Ensure that there are multiple signatories on bank accounts, investments accounts, safety deposit boxes etc. who can sign individually (not jointly). 
  •  If, for any reason, this is not possible, provide a power of attorney to a trustworthy person, who can operate accounts and manage assets should the person become incapacitated.

Prepare the following Wills and Establish Power of Attorney

  • A will (which provides for a division of assets upon passing) 
  • A living will, which specifies who is in charge of medical care and decision making should the patient be incapable of making decisions and also provides guidance on the patient’s care preferences, such as the extent to which life support can be used 
  • Seek advice from asset planning professionals, accountants and attorneys, both, for the parent as well as the child/caregiver. The will and other documents may need to be structured in very specific ways.
  • Power of attorney, which provides power to another person to manage the affairs even within their lifetime, should they become incapacitated).  
  • File the power of attorney with a bank so that there are no complications at the time of usage.  

Tax Implications

  • There are several tax disclosure and payment requirements in the US. The US taxes its residents on their worldwide income and needs declarations of their assets worldwide. Please take this into consideration and consult a tax professional for advice.

 

This article is intended for informational purposes only. Individual circumstances differ for everyone. It is always advisable to get professional advice specifically suited to your circumstances.

Svati Kania Shashank is a lawyer practicing in New York for over 20 years. 

Edited by India Currents Contributing Editor, Meera Kymal

 

Coping with Alzheimers

As we become caregivers to our parents,  many of us come face-to-face with Alzheimers disease for the first time. The impact of Alzheimers can be devastating on families, with patients,  spouses,  children and caregivers having to make tough choices from difficult decisions.

K.P. Unnikrishnan, a management consultant who lost his vibrant 70-year old mother to Alzheimers, eventually had to place her in a care-home and endure more than ten years of visits with a parent whose memory of him had faded completely.

Another family shared their story of a mother-in-law who was physically healthy but who kept trying to take a bus out of town.

As some of us approach middle age and are afflicted by a forgetfulness we laughingly blame on senior moments, there is an unspoken fear – what if this happens to me?

Dr. Renu Lalwani, Assistant Clinical Professor of Medicine at Columbia University, offers a perspective on understanding Alzheimers and how one can cope.

Alzheimers is a debilitating degenerative disease of the mind and the body; along with other dementia, Alzheimers is the fifth leading cause of death for the elderly and estimated to affect 1 in 8 persons in the age group of 69 and above.

In the US, about 4.5 million Americans suffer from Alzheimers and other dementias and these numbers are on the rise.

What symptoms should you look for?

Alzheimer sufferers face a gradual decline in verbal skills, forgetfulness, memory loss, anxiety and depression, leading to frustration, irritability and helplessness. As symptoms escalate patients may tend to repeat words or phrases, have hallucinations, show changes in personality, get lost in familiar territory or wander off.

How it presents

Alzheimers presents in two forms. In early onset Alzheimers, symptoms appear before the age of 60. The second more common type is late onset Alzheimers that presents after the age of 60. Rarely does it strike individuals as early as 30, but after the onset of Alzheimers, the average life span is usually about 8 years, though some patients have lived for over 20 years.

What causes Alzheimers?

The cause of Alzheimers is not well understood. Currently tests can help determine what type of dementia some patients have (for those who have an awareness of their problem) and if any treatable action is necessary. Some patients undergo tests to rule out other diseases causing dementia – such as a brain tumor, infection, stroke or a vitamin deficiency.

Can it be prevented?

Despite recent advances however, there are no definite treatments available that have been shown to stop or reverse the progression of Alzheimers.

In the US, FDA-approved medications do help to manage symptoms and delay progression, but currently there is no prevention for Alzheimers.

Behavioral interventions

In recent years, researchers have begun to explore behavioral interventions in preventing and slowing the progress of dementia. Evidence from observational studies show that when people participate in cognitive leisure activities in middle and late life, it may have a protective effect on the development and progression of Alzheimers disease and other dementias.

Research says, ‘stay active’

One prospective study from the New England Journal of Medicine tracked 500 subjects aged 75+ (without any baseline dementia) over a 5-year period; the study evaluated the risk of dementia against a baseline level of participation in leisure activities.

Results showed that those who regularly read, wrote, played board games, solved crossword puzzles, did arts and crafts, listened to music or played a musical instrument had a reduced risk of developing dementia. The study also showed that social dancing was the only physical activity associated with reduced risk.

Research has found that listening to music or playing an instrument can maintain and improve memory. Another excellent way to keep a patient active is to dance to music; it maintains gross and fine motor skills and helps improve balance. Participation in arts and crafts projects that stimulate creativity – molding clay, painting, stringing beads, knitting, crocheting, flower arrangement as well as hobbies like puzzles, reading and writing, – enhance a sense of pride and fulfillment and offer a venue for free expression.

A word of caution

Remember that these activities are not intended to keep a patient busy; rather, treat them as an aid to provide meaning in a patient’s daily life – tools that enable them to learn, play, contribute and interact socially while feeling safe with others.

It’s important too, that the leisure activity chosen is appropriate to the patient’s cognitive skills, language level, attention span and physical mobility limitations. If the activity is too difficult, it can frustrate the patient and if the activity is too simple he or she could feel humiliated and depressed.

The benefits of staying active

These activities have benefits; memory training, using memory devices like word lists or mnemonics, has been shown to have a positive impact in the area of the brain cells that processes memory.

Functional magnetic resonance imaging has shown reverse brain changes in mild cognitive impairment (a precursor state to dementia). The comparison of before and after images of memory training show increased activation and new recruitment of brain cells in this area of the brain.

Any activity that combines mental, physical and social stimulation offers the greatest benefit to patients in whom the illness has manifested. The success of such activities, however, depends on whether the task is meaningful, gives immediate pleasure and helps patients recapture their dignity and respect.

In the interim it seems prudent for those who are elderly and approaching middle age to continue to challenge ourselves in social and physical leisure pursuits and give ourselves a fighting change with the vagaries of aging and Alzheimers.

The information presented in this article is offered for educational and informational purposes only and should not be construed as personal medical advice. You should consult with your personal physician/care giver regarding your own medical care.

Meera Kymal is a contributing editor to India Currents

 

 

 

 

 

 

 

Aging with Dignity

Once upon a time, our elderly were hard working, productive adults. Then, as they aged, society began to place less value on their existence; adding insult to injury, many elderly today often find themselves in the embarrassing position of being dictated to by their children or carers, without any recourse to self determination. 

Self determination is the process by which a person controls their own life.  In our youth we have this control and tend to underestimate its value. Only as people age and gradually lose their independence do they realize that self determination matters in how they live the remainder of their lives. 

Traditionally in India, the joint family structure allowed for elderly family members to be taken care of organically. But, as industrialization, urbanization and migration changed how societies function, the bond that held families of various generations together began to fracture, become fragile or even become non-existent, leading to the rise of a new paradigm-  that many families and communities everywhere face today – how do we as a society create a system that allows for our senior citizens to live their lives with dignity, independence and self determination but with the safeguards of physical and financial security?  And how do we deal with the issue of depression that creeps in with social isolation and loss of purpose as people grow older?    

This is where Archana Sharma of Samvedna Senior Care comes in.  

After a long and successful career in the tech world, Archana Sharma started Samvedna in 2013  with the aim of making a discernible difference in the lives of seniors. This was very personal for her because her parents are fiercely independent and wanted to live in their own home, but started to find it difficult to do so without some help.  Archana first started with a senior activity center but soon realized that many seniors do not have the mobility to avail of its services. It led to her to create her home service enterprise.  

Archana defines her mission as “provid[ing] best in class senior care services for the elderly to help them live happy, active and independent lives, in the comfort of their home and community through interactive caregiving.” 

Samvedna’s services are concentrated in the Delhi NCR region and have grown over the years to include elder care services, dementia care and  counselling services for geriatric ailments, primarily to fulfill the need for in-place aging.  

Intellectual companionship @home

Elder Care services are companionship-based for seniors who live alone but want to live independently.  Trained counsellors and social workers visit regularly and encourage activities based on the seniors’ interests.  Home management services are also available for general house maintenance. 

 

 

Another service called General Wellbeing helps seniors with bank visits, medical appointments, managing hospital stays and other social engagements.  This service becomes invaluable when the social worker is able to understand and communicate the technical details of a senior citizen’s medical diagnosis. 

Deepak, a Bay Area resident, has been using Samvedna for the past four years and says, “They have professionally educated staff who visit my parents regularly. It gives me peace of mind knowing that my parents are being taken care of, and I get a daily email with an update on their condition.”

Samvedna also provides in- home, long term care .  In this case, caregivers often live with the family.  The in-home attendants are screened by Samvedna and specially trained in the nuances of senior care with sensitivity, especially in cases of dementia.  

Samvedna also provides services to help elderly people diagnosed with dementia, as well as support for their caregivers or family. Its comprehensive service starts with a thorough initial neurological assessment, and specific programs are then recommended to the client based on the results, whether it is cognitive stimulation therapy or social stimulation in a group environment.  Each care plan is reviewed and monitored regularly within their team of multidisciplinary specialists.  

But as Archana says, “early detection is key,” to diagnosing senior citizens accurately, giving them the right treatment and helping families cope with the disease.  Unfortunately, either because of the stigma or a general lack of awareness in India, dementia is often not diagnosed until it has progressed to a moderate or advanced stage.  Samvedna also has a support group for caregivers, which is invaluable because caregivers are often lonely, depressed, emotionally drained and physically spent while taking care of their loved ones.

The fact is, extended families of seniors lead busy lives, with demanding jobs and long commutes.  This 21st century lifestyle has changed the social dynamic of families, whether they live in India, abroad, or even in the same house. As a society, we need to do a better job of acknowledging this and finding solutions to help our senior citizens live a meaningful and dignified life.

Entrepreneurs like Archana Sharma and Samvedna are doing just that.  

More information and details of the services that Samvedna provides can be found at https://www.samvednacare.com/

Anjana Nagarajan-Butaney is a Bay Area resident with experience in educational non-profits, community building, networking and content development and was Community Director for an online platform. She is interested in how to strengthen communities by building connections to politics, science & technology, gender equality and public education.

Edited by Meera Kymal

The Sandwich Generation

The elderly Indian man wanders through the neighborhood, talking to himself and pausing uncertainly every now and then. His clothes are soiled and his eyes are vacant. A neighbor, observing him from behind the blinds of her living room, sighs. This is the third time in 10 days that she has seen him outside, unaccompanied and obviously disoriented. The old man lives next door. His son and daughter-in-law are away at work, their children in school. The neighbor knows that no one will be around till 5:30 p.m. She reaches for the phone to call the police.

Ill and aging parents. A heartbreaking reality that most of us will have to cope with sooner or later. The inevitable reversal of roles, as the hands that once deftly buttoned our shirts and led us confidently across a crowded street, now reach out to us for help in perform­ing the basic tasks of daily living.

It is estimated by the U.S. Administration on Aging that a full 25% of all households in the country are involved in caring for a family member, usually a parent. While the number may not be quite that high in the South Asian community, it is nevertheless increasing rap­idly, as more and more families are choosing to bring aging parents and relatives from their native countries to live with them permanently.

Four generations of an Indian-American Family
Four generations of an Indian-American Family

Typically, the caregivers are adult children with kids of their own, often known in the media as the “sandwich generation”—caught between childcare and elder care. Research has shown that almost 65% of women in this country will have to deal with extensive or partial elder care issues.

 Chandra Deshmukh, a Marin County resi­dent thinks that “sandwich” is an apt descrip­tion of a person in her circumstances. “I have two little kids and a father who is often in hospital with complications from diabetes,” she says. Her father lives in Houston, Texas with her older sister, and Deshmukh has already flown to Houston three times this year to help with his care “dropping into my husband’s lap the kids, their homework, din­ner and piano lessons.” She says she has learned to live with a constant sense of guilt, feeling inadequate at work and incompetent at home. “There is this nonstop worry in my head that I am not doing enough for anyone—my kids, my husband, my employer, or my father, whom I am very close to,” she adds.

According to Rita Ghatak, a Palo Alto­ based psychologist and specialist in elder care, guilt is a very common feeling among adult caregivers. “The feeling of helplessness and guilt can be overwhelming at times and in trying to take care of everything themselves, these women, (and most of the caregiving is done by women aged 35 to 50), fail to look after their own needs,” she says. Ghatak knows, because she has been there herself. For 14 years, she was a long distance caregiver to her parents who lived in India. In that time she flew to Delhi 16 times to take care of, first, her father who suffered from Parkinson’s disease, and then her mother who suffered a stroke in 1995. “I was completely stressed out,” she remembers ‘There were times when I was so tired and worried that I could not think straight. I wanted to be in both places at the same time.”

Ghatak is also CEO of Older Adult Care Management (OACM), a private organization founded over 15 years ago, and considered a pioneer in the field of elder care. The organiza­tion provides a comprehensive care program for adults through quality home care services like trained health aides, family counseling, case management services, and elder care education. OACM has virtually no South Asian clients, because, Ghatak says, they are largely unaware of the variety of elder care resources available in the community. “It is not that they want to be ignorant, it is just that they do not know where to go for the informa­tion. Sometimes a parent’s illness catches us unawares and we are unprepared to handle it,” she says. Lack of information led to less-­than-desirable situations like the one de­scribed at the beginning of this story. In this case, the elderly man was referred by the police to the county-run Adult Protective Ser­vices. In turn, OACM was contacted and Ghatak ended up sending an information packet in the mail to the caregivers. She never heard from them but she hopes that the family was finally able to get some help and take care of their father.

When it comes to taking care of one's parents, most adult children are lost in a maze of emotional and logistical issues
When it comes to taking care of one’s parents, most adult children are lost in a maze of emotional and logistical issues

When it comes to taking care of one’s parents, most adult children are lost in a maze of emotional and logistical issues. Some dis­eases like dementia (a common form of which is Alzheimer’s disease) or Parkinson’s disease, both of which are on the rise worldwide, according to the World Health organization, make home-based caregiving especially diffi­cult. Still, how can one send a parent to an outside facility? Will that not amount to aban­donment? How would the parent take it? What about the cost: emotional and financial? Decisions like these are hard to make and even harder to justify to relatives and siblings who are watching from the outside.

Using trained help, strangely enough, is one of the last options considered by many South Asian caregivers. “It is expensive but more importantly it could be seen as pawning off your responsibilities,” remarks Deshmukh, whose has just succeeded in persuading her reluctant sister to hire a door-to-door service to take their father to the doctor for regular appointments. However, using trained help could ward off potentially dangerous situa­tions. “If I had to do it again, I would definitely use trained help,” confirms Inderpal Grewal, a full time professor and mother of two little girls living in El Cerrito. Grewal had just given birth to her second child when her mother, who suffered from acute rheumatoid arthritis came to live with them. To Grewal, it was spotting the little things that could prevent the bigger things from happening that drove her crazy. “I was always worrying about things. Are the bars in the bathroom safe? Is the house too cold? Is the bed okay?” she says. “In spite of all this my mother caught pneumonia, be­cause we had not kept the house warm enough. Old people are more fragile than they appear.” Subsequently, her mother went to live with another sibling in Connecticut where a home health aide came to look after her needs several times a week.

Taking care of a parent can create stress and awkwardness between siblings.

Rashmi Rustagi is a stay-at-home mother of four in Palo Alto. Her children range in age from 5 to 15 and take up much of her energies and time. Rustagi’s parents live with her. Last year, her mother suffered a stroke and became almost bedridden, needing con­stant care. The subject of who would be the main caregiver came up often at family dis­cussions with the other siblings. Though each of them make financial contributions towards their mother’s health care, Rustagi feels that she was chosen because “most often it is the sister who stays at home or is the wealthiest who gets to take care of the parents. The others plead work pressure, or lack of space or money.” Rustagi feels a little taken for granted because she ends up putting in so much more effort and time than her sisters and brothers do. Lately, she says, she has taken to keeping a log of the time she spends looking after her mother’s needs like taking her to doctor’s appointments, or the physical therapist. “Not the expenses, mind you, just the time,” she hastens to add. “And one of these days I am going to show it to my siblings just to let them see for themselves how much effort it takes to just keep things going.”

To many South Asians, taking care of a family member might mean flying half way around the world several times a year. As Ghatak testifies from her experience “it takes a heavy toll on your family life.” Even so, bringing the family member over to the U.S. may not be a logical solution because of the high cost of health care and the emotional cost of uprooting the person from her native cul­ture. In addition to this, says Grewal, the person often finds herself confronting a racist health care system in America, “one that believes that most immigrants are out to rip off the system.”

Pradeep Joshi, a co-founder of the Indo­American Community and Service Center (IACSC), and a commissioner serving on the Senior Care Commission of Santa Clara, agrees that seniors who come over from India have to deal with isolation and a loss of empowerment. “And without MediCal, healthcare is prohibitively expensive,” he stresses. “A recently passed immigration law states that those seniors who immigrated to the U.S. after October of 1996 are not eligible for Supplemental Security Income (SSI) or MediCal. This will definitely have a negative bearing on family decisions to bring a parent over.”

All too often, the “sandwiched” adult, torn between making time for the kids and the parent, feels like the rope in a tug-of-war game. Ghatak suggests a few simple guide­lines to make the task easier. Planning ahead is the essential key to elder care management. Confront the situation and talk about it and if the parent is capable, involve him or her in the decision. Scope out the services available in the community, clubs, recreational centers, senior centers, and groups that the parent might be interested in joining. If the parent is handicapped or suffering from a debilitating disease, look into the possibility of hiring home care aides. And above all, make time for yourself, to exercise, socialize, rest and main­tain recreational outlets. Lack of proper care of oneself might lead to stress-related illnesses like chronic headaches, ulcers and depres­sion.

With over 200,000 South Asians in the San Francisco Bay Area, it is inevitable that senior support networks are springing up within the community. Apart from sporadic activities organized by the local temples, mosques and gurudwaras, the Icse in Santa Clara runs an excellent senior program that stresses independent living. The Center hosts lecture programs, yoga classes, computer and writing courses and a variety of social activi­ties for South Asian seniors from day outings to cultural programs.

Looking after a relative or parent can be an enriching experience and the ultimate expression of love and compassion from one human being to another. Deshmukh’s children are learning this valuable truth as their mother packs her bags for yet another trip to see their grandfather. In the Rustagi household, life is just a little richer, as grandparents and chil­dren learn to share their living space and their experiences with each other. “It finally boils down to this-there really is no right or wrong way to do things. Accept your limitations and just do the best you can,” states Ghatak.