Tag Archives: Alzheimers

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

 

Letters to the Editor: 2/1/2021

Dear India Currents,

The new year brings new hope in the fight to end Alzheimer’s.

As our nation renews its collective focus to end Alzheimer’s, this year can bring hope and optimism to the millions of American families affected by this disease.  2020 was a year of great uncertainty that saw those affected by Alzheimer’s at greater risk than ever before, but 2021 represents a time to be optimistic with the Inauguration of Biden’s Presidency on Jan 20th

My motivation to be a part of this movement comes from my mother who passed away just before the holidays. We are still mourning her loss while trying to overcome our frustration on the late diagnosis of Alzheimer’s which caused irreversible damage. We had to battle with the healthcare systems both in the US and India to find out the cause for her rapidly deteriorating mental faculties. The primary care physician’s timely diagnosis would have helped us prepare for what to expect and actively work on improving her condition. 

With a new Administration and a new Congress, we have new opportunities to address Alzheimer’s as a public health crisis – not just to develop a disease-altering treatment, but also to improve the quality of health care for current and future dementia patients.

More than 95% of individuals with dementia have one or more other chronic conditions such as hypertension, heart disease, and diabetes.  A person with dementia is 4.4 times more likely to have six or more other chronic conditions than someone without dementia.  Health care utilization is significantly higher among seniors with dementia than among seniors without dementia: the annual hospitalization rate is twice as high; the use of skilled nursing facilities is nearly four times higher.  In addition, on average, a senior with dementia will visit the emergency room more than once each year.

Please join me in thanking Ro Khanna for leading in the fight to end Alzheimer’s and improve care and support for those affected. 

Deepak Rama

If you would like your opinion or perspective expressed at India Currents, do not hesitate to contact editor@indiacurrents.com with a submission or note. 

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.

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

An Unusual Love Story for Mother’s Day!

Crisply starched cotton saris. A hand kerchief tucked at the waist.  Hair in a top knot. Bustling with life and laughter. Her belly laugh lit up the room and caught everyone in its unique charm. She was Sundari – “The Beautiful One”.  Aptly named, for she was indeed beautiful, and endowed with a generosity of spirit that could move the most ornery person in her orbit! I was a girl of 20 when I first met her. Young as I was, I  didn’t stand a chance. I fell in love – with my husband’s mother! 

It was, needless to say – an unusual sort of love story. All around me were examples of badly soured relationships. And yet, there we were! She was nothing if not welcoming and refreshingly so. There were days when I found myself thoroughly flummoxed by her son – my brand new husband. But never by her! Taking me under her wing, she championed my cause with every decision I made, no matter how foolhardy it seemed; always sticking up for me over her own daughters. She had the sensitivity to put herself in my shoes, because she herself had been a young bride once. And she declared that she would see to it that I did not suffer the same trials she had. A brave stand which endeared her to me through all the years to follow! 

She had a clarity about the things she liked and disliked. And she absolutely abhorred the label, ‘Mother-in-Law!’ According to her, that particular label was coined by a heartless, bitter sort of a person, and it was designed to make any strained relationship break with the weight of its hyphenated formality. The very first thing she said to me was, “I don’t expect you to address me as Amma. You can call me whatever you’re comfortable with. And I don’t care much about what the world thinks.” That floored me. I settled for ‘Aunty’, and it suited us just fine – because the label which I used to call her didn’t really matter.

If there was one thing that got her ire up, it was the plight of women. She railed at the injustice of antiquated social norms, and the expectations that weighed heavily on the side of women, especially within the confines of their roles as daughters-in-law. “How can women dare to judge other women so poorly?” This was her constant refrain. We would shake our heads and drink steaming cups of coffee in the afternoons. She brushed my hair, insisting that I wear it in the latest fashion; she rejoiced when I managed to drape my sari without her help. The icing on the cake was when, a month into my marriage, she packed me off to my parents’ house, so I could celebrate my birthday with them. That was unheard of in our circles! She was sensitive to the fact that my sister would be missing me sorely on my birthday, and she was secure in the knowledge that she was only doing what she felt was right. 

Her husband, my father-in-law was a quiet man of few words. He chose to listen and commented sparingly, always content to be with his ledgers and paperwork. She, on the other hand, was a whirlwind of action and opinions – firmly but lovingly delivered. She referred to him with a twinkle in her eye, as “Yajamaanru” – a Kannada term loosely translated to mean “Lord.” But he knew who wielded the power behind the goings on of the home! There was a gentle, teasing sort of camaraderie based on mutual respect, that came from sharing life experiences together. To observe them, was a revelation to someone like me, who was just making the transition into “wifehood.”  There was an “exchange of words” one afternoon, and she threatened to leave him to his fate. He responded very calmly, “Sure! I can’t stop you. Just make sure you come by to cook me your delicious meals!” The impasse ended with her doubling over with laughter at his absurd idea of a mutually beneficial understanding!

You could count on her to discuss politics, music, fashion, Bollywood, and spirituality with equal fervor and wit. We spent many an evening giggling over the madness whipped up by Salman Khan’s bare chested antics! But she was unfailingly devoted to her favorite deity, Hanuman! She absolutely loved window shopping, thrilling in each discovery as we walked the store fronts! As the years went by, she swapped the cotton saris she loved, to the more easily manageable Garden Vareili brand of saris. But she was always elegantly put together. Renowned for her famed hospitality, she opened her modest home to all and sundry with warmth and love. “They don’t come to see my house. They come to see me,” she’d say with a laugh! Whipping up delicious meals in what seemed to me, a matter of minutes, she would happily feed you even if you turned up unannounced. Every single guest walked away feeling like they had feasted at a banquet! 

There are so many memories I hold dear about her, who was in many ways a window into my husband’s mind. His love of music and nature, a childlike curiosity about the world, and a propensity for bear hugs – are the inheritance she bequeathed to him. And when he irks me, I remind him that he was not my first choice – his mother was! 

They say that the true mark of a person is his/her humility. On the eve of my departure to join my husband in the United States, I was in tears, anxious about the long journey and my future with a man I scarcely knew. She cracked up when I insisted we change my tickets so she could accompany me.  And then, she sat me down with a serious, somber look about her. I remember being suddenly afraid that I had said or done something wrong. In her usual manner, she got right down to it.  She apologized. “Sometimes I say things without thinking. If I hurt you without meaning to, I am truly sorry,” she said. And with that, she rendered me speechless. This was a trait I could spend a lifetime trying to cultivate, but fail miserably! 

In a cruel twist of fate, this spirited, loving woman was diagnosed with Alzheimer’s disease. It rendered a blow not just to her husband, children and siblings, but to every person who ever knew her. It left us shattered and helpless, watching on the sidelines as it stole her language, her memories and her spirit.  I was only thankful that I had managed to give her a special gift in the form of my daughter, while she could still retain that memory.

She lost that battle in 2015. And we lost a wonderful soul.

Even today, almost three years since she left us, I still sometimes expect to hear her voice on the phone. I see her spirit, in the way my child speeds and tumbles through her life. I see her smile in my husband’s face. And I hear echoes of her hearty laughter through her daughters. 

I am grateful that life bestowed an unusual honor on me; a rare and unique experience. 

The experience of life with a “Mother-by-Love”. 

 

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.