U.S. President Donald Trump and presidential candidate, Vice President Joe Biden, are united by one issue at least – the rising cost of medication.
This July, prices rose 3.1 percent on average for 67 drugs compared to the same period last year. GoodRx points out that the increases came on the heels of a 6.8% surge, on average, from January to June 30 of this year – manufacturers raise prices in January and July annually. And for many Americans, this means not filling their prescriptions. In a new poll by Best Health and the Global Strategy Group of 4,200 potential voters in Arizona, Colorado, Georgia, Iowa, Maine, Montana, and North Carolina, the main battleground states for the Senate, 22 percent of the respondents said they couldn’t afford medications prescribed by their doctors.More than a quarter (26%) said they or their family members were unable to seek treatment for a health problem in the last year due to cost concerns.
Rising costs have also affected another demographic – parents from India visiting their offspring. Thousands of older Indians have had to extend their stay as a result of travel restrictions amidst the pandemic earlier this year.
“My father is 75 years old and has had benign prostate hyperplasia (BPH) for about 10 years. His urologist made the very unwise decision to perform surgery for my father’s BPH right before he came to visit me. He’s been experiencing complications from that ever since,” says Dr. Debyani Chakravarty, a new mother and a faculty member in the department of pathology at the Memorial Sloan Kettering Cancer Center in New York. “I bought both my parents’ travel insurance but since these are complications from surgery, nothing is covered. I pay $300 per consultation with a doctor here, $300 for my dad’s cystoscopy, $100 for labs, and $200 for his meds so far. In Pune, their medication (alone) would cost at least ten times less.”
Another set of parents visiting their daughter, also a new mother in New York, were Sushima Sekhar and her husband from Chennai. Both had to postpone their return and were running out of their diabetes, blood pressure, and cholesterol medication they’d brought from India.
Their daughter’s physician, Sekhar says, asked to see them in order to prescribe. “The consult per person was $250, quite steep,” she recalls. “In the meantime, we got the number of a COVID Tamil Task Team which was doing an unbelievably great service to stranded Indians here. They had chemists and doctors in their group. All we had to do was give them our Indian prescription, and they would find the equivalent generic low-cost drug, double-check with their doctors, (and issue us a prescription here). We kept them as a last resort because the price of meds, however low, was way too high when converted in Indian rupees – anywhere between five to fifteen times higher.”
Sekhar eventually succeeded in getting the medication couriered from India, after that avenue opened up following a lockdown there.
But for many others, obtaining affordable medication in time without missing dosages would have been impossible but for voluntary groups such as the COVID-19 Tamil Task Team, and Non-Resident Indian doctors in the Telugu community.
“The federal government relaxed telemedicine rules (as a result of the pandemic), and I wanted to help these people stranded here. For one prescription to go out, we had ten volunteers working on it,” says Dr. Saravanan Ramalingam, a trauma surgeon in New York who helped launch the service. The initiative gained momentum after the group had a conference call with Shatrughna Singha, Deputy Consul General of India, New York, who was keen that Indian-origin doctors provide help to visiting older Indians in need of healthcare and medication, Ramalingam points out.
Vasudevan Kothandaraman, an IT professional in New Jersey, helps to co-ordinate within a group of around 30 volunteers. The quality checks are stringent, he says, and prescription requests are routed through the app Freshdesk. Volunteers verify the Indian prescription and refer patients to a telemedicine team of doctors if required. A group sends the list to local pharmacies to find out if an American equivalent of the drug is available. If it is, the verification team, consisting of doctors, nurses, and pharma PhDs search for a cheaper, generic alternative. The prescription team reviews the process, and a doctor faxes a prescription to a pharmacy nearest to the patient’s home. “If the cost is really high, we provide them with GoodRx type of discount coupons,” Kothandaraman says. “We have issued 400 prescriptions (at the start of the pandemic lockdown).”
Now, a fall surge expected by the Centers for Disease Control and Prevention could again intensify the struggles of older Indians visiting in the U.S., and those who have extended their visas to be with family.
Doctors are standing by to help.
“One Telugu lady, a mother visiting her family in North Carolina, had recurring urinary tract infection. She was stuck here because of the lockdown and had no clue where to go and what to do,” says Dr. Saraswathi Lakkasani, an internist who was recently awarded a fellowship in gastroenterology and hepatology by the New York Medical College. “I heard her medical history – she had co-morbidities – and prescribed antibiotics at a CVS Pharmacy close to her. Told her to drink plenty of water and some cranberry juice; her symptoms were gone within a week.”
Lakkasani pauses, adding reflectively: “She is an elderly stranger, she is talking in my language. It moves you.”
Sujata Srinivasan is a business and healthcare journalist in Connecticut. Find her on Twitter @SujataSrini.
This year father’s day felt different. And I don’t mean in the way we celebrate it, because like others I was guilty of incessantly googling many creative and indoor ideas that were floating on the internet, but in its deep sentiment and what it represented. For me this year, I celebrated the often overlooked tenderness in fathers.
Australian poet Pam Brown once wrote, “Dads are most ordinary men turned by love into heroes, adventurers, story-tellers, and singers of song.” I am head-over-heels about my own father. I love fathers in all their forms and shapes because there is nothing more appealing than to see a man’s tenderness crawl out of him in the moments least expected. And fatherhood, if nothing else, will do that to a man.
Being raised by a single father myself, I have seen the tenderness that is possible from a father, I have come face to face with the fact that gender does not decide how one loves and that such love can achieve a lot. I have always celebrated my own father’s tenderness, but in the past few months, my observation of acquaintances, friends, and family has been unique. The Pandemic has given a new face to fatherhood, that of a deeply involved state of participation, frustration, and a redefined idea of love and responsibility.
Within the Indian and even the Indian American social constructs, the father is still seen as the patriarch, the provider. Life in America, compared to India, gives fathers more chances to be involved in the household. They cook, clean, do the dishes, change diapers, drive children to school, and be part of many more practical child raising opportunities. And yet, many fathers do not know the ins and outs of day to day life with children of all ages. It is one thing to do this part-time and another to provide and nurture at the same time, around the clock without any breaks.
A friend whose wife recently had her second child confided in me recently about such an experience. Last time around even though having a newborn was a life change, her husband went back to his life after the paternity leave. But this time, his understanding of the sanctity and struggles of the postpartum period have made him see his own role as a father in a deeper light.
And there are other fathers who get to see the juggle of the children at home, the never-ending labor of love, with no escape. Fathers who are now spending time with teenagers who are off to college in the next few years, their own kids who in the pre-pandemic world had no time to see them, but now they cherish three home-cooked meals together.
And then there are the empty nesters, fathers who now see closely, the pain of the long days of mothers who spent a big part of their adult lives serving children, now starting a new life.
But make no mistake, fathers are losing their minds. They have never done this before and for the first time, they can’t wait for the work alarm to ring at five am again. But meanwhile, they are pushed to their limits. They are exhausted. All they want is a drink with a friend to escape this elevated chaos called the family life. They have children climbing on their sore backs and grumpy teenagers endlessly debating political subjects. And through these sighs and screams, the impatience for the days to end, and passing many a sulky and under-productive day, their hearts have opened, their roles have expanded, and they continue to see the new dimensions and expressions of tenderness. So I hope all the fathers out there did get that drink, whether it was in the bathroom or in the attic, that they were celebrated, because this year they deserved it, more than ever.
Are you caring for someone – perhaps an elder – who is seriously ill? Do you look after a disabled son or daughter? Perhaps you’re in the ‘sandwich generation,’ raising children while you worry about and care for a parent? If you answered yes, you’re already in the Caregiver Club. If you said no, consider changing your answer to no, not yet. To quote Rosalynn Carter, President of the Rosalynn Carter Institute for Caregiving, and former First Lady of the US:
“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
The Caregiver Crisis in the United States is rapidly getting worse. Each day another child, spouse, relative, or friend is faced with providing care for someone who can no longer look after themselves because of increased frailty, illness, or trauma. They become responsible for that individual’s physical, psychological, and social needs. Experts warn of the increasing strain this trend will place on society in the coming decades. About 43 million friends or family members in the US are primary caregivers today for adults and children with disabilities, or someone recovering from surgeries and illnesses, or coping with Alzheimer’s and other chronic diseases. Many are themselves aging. Caregivers – primarily women – provide 37 billion hours of unpaid care annually – $500 billion in economic value, according to one estimate. 10,000 baby boomers turn 65 each day. The growing population of people who will need 24-hour personal care has been likened to an approaching “slow-moving tsunami that has no end.”
Caring for a loved one can be enriching and rewarding; the experience creates opportunities for personal growth. Caregiving brings out the best in us; we approach it with love and compassion and are devoted and determined to do our best. However, long-term care demands sustained attention and is physically exhausting and emotionally draining for both the giver and receiver of care. Relationships are affected. Significant changes need to be made in daily lives to adapt to new realities. Caregivers are frequently unable to pursue normal relationships or lead normal lives. Life can become stifling with increased stress and anxiety. Caregivers themselves need support, without which they face burnout or become ill. Caregivers in the South Asian community additionally deal with unique social and cultural issues that need to be addressed in a targeted and sensitive way, making the problem more challenging.
As we grow older, we all want to “age in place;” live safely, comfortably and independently in our own homes and community, in our comfortable environments. The reality is that we will lose this ability at some point. Many of us also worry if another: an aging parent, relative, or friend can continue to age in place. We worry about the day when their ability to manage their own lives independently begins to diminish, and about what would happen then. The question is not if this will happen, but when. These concerns are often triggered by changes we observe in their behavior.
Gerontologists, geriatricians and other aging experts offer excellent advice on how to prepare for such an eventuality – advice we should heed. The first consideration is the elder’s ability to independently care for him- or herself – to carry out what are known as the Activities of Daily Living (ADLs). Can they feed themselves? Move about on their own, get in and out of a bed or chair? Bathe or shower? Use the toilet? Dress and groom themselves? Next, evaluate other activities necessary for independent functioning, known as Instrumental Activities of Daily Living (IADLs). These include remembering things, cooking and preparing meals, cleaning and maintaining the home, shopping and buying necessities, running errands, managing money and paying bills, speaking or communicating on the phone, and correctly taking prescribed medications. If any of these present challenges for your loved one, then he or she needs some kind of support and/or care.
When a concern is identified, experts recommend a family meeting with everyone involved, including the elder, to have open and honest discussions with the goal of getting the best possible care for the elder. Discuss his or her requirements and anticipate future needs. Consider all the available options and constraining factors to meet those needs. These discussions should include financial and estate plans, care planning, and Advance Directives. The costs of keeping the elder at home together with professional assistance if required, have to be weighed against the financial and emotional cost of moving him or her into an assisted-living facility. Perhaps a phased approach could be implemented. If dementia or serious illness are considerations, medical professionals should be consulted and their advice factored into the decision making. The more prepared we are, the more advance planning we do, the less stressful and more rewarding caregiving will be.
If you answered “yes” to my questions above, you’ve already experienced the challenges of caregiving, and I have an important message for you. It’s critical to start with self-care and self-compassion, otherwise, you will burn out. Linda Abbit provides excellent advice in her recent book The Conscious Caregiver. As you take on these roles and responsibilities, she says, it is important that you understand, recognize, and address your emotions. At various times you will feel guilt, resentment, fear, grief, depression, anger, or embarrassment. It is okay if you do. Address your feelings consciously, and discuss them. Be kind to yourself. Make time daily for self-care. Abbit recommends making a happiness list. Put down all the things you like, and make time to enjoy them. Meditate. Adopt breathing practices. Listen to music. Eat healthy and sleep well. Stay active and get exercise. Commune with nature. Practice gratitude. Pamper and reward yourself occasionally. It’s okay to vent; bottling up your emotions will affect your health. It is essential that you accept help – even seek it – from others. You cannot do it all. Delegate to others what and when you can. Be an advocate for both yourself and your loved one. Learn to let go of what you cannot control. By first taking care of yourself, you will be a better caregiver.
The tsunami is coming! Will you be ready?
Sukham Blog – This is a monthly columnfocused on health and wellbeing.
Mukund Acharya is a co-founder ofSukham,an all-volunteer non-profit organization in the Bay Area established to advocate for healthy aging within the South Asian community.
The radio crackled alive as the lines were opened to listeners. Radio show host, Raman Dhillion fielded queries from perturbed truck drivers and their families with assurance. In the front line on the war against COVID-19, the truck drivers who drive along long lonely roads to keep the essential supplies stocked during the coronavirus outbreak were anxious. What perturbed them today was not just the fear of contracting the virus but the danger of economic penury. Closed businesses and industries along with no freight at docks have seen truck drivers lose money and sleep; and worse, the rates being paid to truckers are below pre coronavirus times.
To provide economic life support to small business owners, independent contractors and workers, just like the ones on the other end of Raman Dhillon’s phone line, Congress passed the $2.2 trillion CARES Act (Coronavirus Aid, Relief, and Economic Security Act). The questions being volleyed at the radio host were about how they could benefit from the Act.How can I find out if I am eligible to get funds and how do I go about it?
Anxious questions came fast and furious from people like Bhupinder Singh, an owner-operator or someone who owns the truck he drives; Chandan, who drives a truck for someone else, and Mansi who owns a food business.
Of the more than 3.6 million truck drivers,LA Times estimates that tens of thousands trace their ancestry to India. Raman Dhillon who heads the North American Punjabi Trucking Association (NAPTA) estimates that 30% of California’s trucking industry is run by them.
The importance of keeping the truck drivers in business is clearer now than ever as essential goods need to reach the shelves of health establishments and grocery stores. Truckers need capital or liquidity to keep their wheels turning.
The Where Is My Economic Impact Payment app to be released by Internal Revenue Service’s (IRS) on 17th April promises to address their questions.Additionally the Treasury Department and the Internal Revenue Service’s new web tool, for people who don’t need to file taxes, available April 17th will allow them to register for Economic Impact Payments. (They should look for Non-filers: Enter Payment Info Here on IRS.gov. to go directly to the tool.)
At a press briefing organized by Ethnic Media Services on 8th April, IRS Information Deputy Commissioner, Sunita Lough explained what the workers like Chandan Kumar, independent operators/contractors like Bhupinder Singh and small business owners like Mansi Tiwari could expect.
Chandan Kumar Is An Employee. How Can He Get Funds?
Chandan delivers foodservice products for Saladinos of Fresno to restaurants like Subway, Round Table Pizza, Pizza Factory, Hometown Buffet, Yogurtland etc. As Shelter in Place hit California Chandan’s expenses went up and the number of paid work hours went down. At truck-stops where earlier you could get free coffee if you carried your own cup he now has to pay full price for coffee as they must use disposable cups. Food places are shut or they close early.
Chandan does deliveries really early in the morning wearing disposable vinyl gloves and carrying a sanitizer. Paid for every mile he drives, his income has reduced. Some customers like Subway, though open for business, have plummeting sales; others like Hometown Buffet are closed.
People eligible for unemployment benefits, according to IRS Information Deputy Commissioner, Sunita Lough, include , “Workers who have lost their jobs or have reduced hours of working as shelter-in-place orders are implemented will receive payments. Everyone with a valid Social Security number is eligible to receive the one-time full $1,200 payment and up to $500 for each qualifying child.
Chandan who has two children, has an adjusted gross income that falls within the prescribed salary range of: income up to $75,000 for individuals, $112,500 for heads of household and up to $150,000 for married couples filing joint returns. He is eligible to receive this one time payment of $2,200, but his wife who files a return as a dependent will not get any compensation in her own right.
Filers with income exceeding $99,000 and $198,000 for joint filers with no children are not eligible. Chandan does not fall in that range.
Chandan filed his taxes for 2018, though he is yet to file them for 2019. The IRS will automatically deposit the payment to his bank account provided he has his direct deposit details on file. The IRS says he does not need to take any action. In order to receive an economic impact payment as quickly as possible, direct deposit works faster than a check in the mail.
Chandan’s parents, who receive Social Security, and in the past have not been required to file a tax return, will also receive the money. The Treasury Department and the Internal Revenue Service’s new web tool available April 17th will allow them to register for Economic Impact Payments. (They should look for Non-filers: Enter Payment Info Here on IRS.gov. to go directly to the tool.)
Deputy Commissioner Lough warned of telephone scams and phishing attacks asking for bank accounts and social security numbers. “The IRS does not call and say that,” she said.
Additionally, if Chandan files for unemployment benefits because of his reduced income he will get much more than he normally would have. Under the plan, eligible workers will get an extra $600 per week on top of their state benefit. The maximum weekly state benefit in California is $450. If you are unemployed, partly unemployed or unable to work because your employer closed down, you’re covered under the bill. All eligible workers will get an additional 13 weeks over the state benefits (26 weeks of California) of unemployment through the state’s Employment Development Department.
Part-time workers are eligible for the additional $600 weekly benefit.
If his employer didn’t lay him off but heaven forbid, Chandan has to quit because of a quarantine recommended by a healthcare provider, or if his child’s daycare is closed and he is the primary caregiver, he is covered. On the other hand Chandan can’t quit his job of his own volition and expect to be paid. If he fears that his job as a truck driver exposes him to the virus and he would like to stop working, he becomes ineligible for unemployment benefits.
Chandan also needs to file his taxes with a social security number. If he files his taxes with an Individual Taxpayer Identification Number (ITIN) he would not get any benefits even if his spouse has a social security number. Everyone in the household would be denied access to the cash assistance.
Bhupinder Singh Is An Independent Contractor. What Can He Get?
Bhupinder Singh, as owner operator of his own truck, is out of luck. Mr. Powell of KP Trucking and Transport feels owner-operator truckers that form a bulk of the industry, are going to be the worst hit by the economic crisis. “They operate on the smallest profit margin. They are so busy day-to-day trying to make ends meet that owner-operators don’t have time to gauge the market, forecast financials and be more creative in generating income. They operate at the lowest rate available just to make sure they have work at all. This group is likely to go out of business. They are already stretching to make payments and are at the mercy of others to keep the business going,” he feels.
“Operating costs are high. The equipment costs are high and they are expensive to repair. It is a hard job. The trucker is on the road 16 hours of the day, and spends the weekend maintaining his truck,” Powell said. The CARES Act has expanded unemployment benefits to include independent operators/contractors like Bhupinder Singh who weren’t previously covered by unemployment insurance, such as self-employed, temporary workers, part-time workers, freelancers, contract workers, and gig economy workers. The IRS will use the information on their Form SSA-1099 or Form RRB-1099 to make Economic Impact Payments to them of benefits as per their forms.
Singh has a choice to file as a self-employed individual, independent contractor or a small business entity. If he applies for unemployment benefits he will also likely be asked whether he can telework with pay, in which case he would have been ineligible. But as a truck driver he really can’t work from home.
But self-employed folks like Singh, including sole proprietors, and individual contractors working full-time, part-time or other status, are eligible for two types of loans -The Payment Protection Plan (PPP) and Economic Injury Disaster Loan (EDIL). They could apply for the PPP, starting April 10, 2020, through banks insured by FDIC, credit unions or farm credit systems. Here is a list of approved SBA lenders.
Mansi Tiwari Is A Small Business Owner. What Can She Get?
Balvinder Singh Saini and Mansi Tiwari run Punjabi Dhaba, a roadside eatery that serves Indian food, in Bakersfield, California. At the end of their long journey, truckers stop to refuel, shower and eat at truck stops with diesel stations and facilities. Roadside eateries like Punjabi Dhaba serving Indian food are becoming more and more visible along major routes. They are mostly mom-and-pop shops run with skeletal staff. Hot lentil daal soup with whole wheat roti bread awaits the tired trucker in normal times. But these are not normal times and all eateries are shut.
Small business owners like Mansi with bills to pay, are the worst hit. They don’t want to lay off or furlough their employees, especially cooks that are hard to rehire, but they have mortgage, rent and utilities to pay.
To help small business owners retain their employees and stem the tide of unemployment, the CARES Act offers the Payment Protection Plan (PPP), while another option is the Economic Injury Disaster Loan (EDIL), that goes into action when a state of emergency is declared. .
Under the Paycheck Protection Program (PPP), small business owners can apply to banks for eight weeks of cash-flow assistance to maintain payroll during the emergency. No personal guarantee is needed. The loan size would equal 250% of an average employer’s average monthly payroll, with a maximum amount of $10 million and maximum interest rate of 4%. The loan is due in 2 years and carries a 0.50% fixed interest rate. Loan payments will be deferred for 6 months, and the program will be available retroactively from February 15, 2020 enabling employers to rehire any recently furloughed or laid off employees.
There is a possibility that this loan may be forgiven. If the Punjabi Dhaba keeps the same number of employees for the next 8 weeks, even with some reduced pay, the loans may be forgivable as long as 75 % of the loan is spent on payroll. Payroll costs are capped at $100K per employee, annualized. Then Mansi can use the rest 25% of the loan towards payment of mortgage, rent and utilities. It can also be used to pay interest on debt obligations incurred before March 1, 2020.
She will have to apply to have her loan forgiven with documentation verifying how the money was spent. For the portion of the loan that is not forgiven, the rate and term charged would be 1 % fixed for 2 years.
Places like the Punjabi Dhaba and similar small businesses and sole proprietorships can apply for loans through their banks, starting April 3, 2020,from a list of approved SBA lenders.
Unfortunately, with a large number of businesses applying for loans some lending institutions like Wells Fargo are dithering – they are not obligated to and may be unwilling to loan, and the sheer volume of applicants is creating a delay in processing loans. . The SBA is under pressure and responses may take 3 to 4 weeks. So small businesses may have to be patient and settle for just an acknowledgement of receipt of their application for the moment…They can submit the Paycheck Protection Program loan application by June 30, 2020; however interest will continue to accrue over this period.
Mansi can also apply for the Economic Injury Disaster Loan (EDIL) for up to $2M over a 30 year term. EDIL Interest Rates are at 3.75% for small business and 2.75% for non-profits with the first month’s payments deferred a full year from the date of the promissory note. However, since requirements have changed since the announcement of the CARES Act, many small business owners who submitted applications before March 29th are reapplying for loans.
It would be prudent for Mansi to send her application in ASAP as loans are being approved on a first-come first-served basis; she can hope to get funds as long as there is still money in the pot.
What about those that are not eligible? That long list includes non-resident aliens, those with Deferred Action for Childhood Arrival (DACA) status and Temporary Protected Status, H1-B and L-1 work permit holders, truckers too busy to keep on top of paperwork, food workers who are paid in tips that are not recorded income, immigrant workers and all those that oil the wheels of the truckers to ensure a productive ride. For immigrant workers it is going to be extremely difficult to tide over this period.
The drivers make an equivalent of $15-20 an hour and only after 10 years can the trucker even make $25 an hour. Yet the truckers ply the roads delivering essential services against all odds despite the threat of infection. “We cannot have this situation be one that ossifies, that solidifies the inequality and (inability to) access capital. Access to capital is so important,” House Speaker Nancy Pelosi said. The truckers are drowning even as they plod along. They are running out of cash as they wait for the promised loans.
Splayed on 75-year-old Kamala Krishnan’s bedside table are three books: Life After Death by Deepak Chopra, Reaching to Heaven by James Van Praagh, and Love and Death by P. Rajagopalachari. These books are a constant reminder that the hereafter is no further than an arm’s reach away.
Krishnan’s is the typical story of the elderly Indian American immigrant. After the death of her husband, she moved to America to live with her daughter. “Truly, I wish to die and not trouble her like this,” says Kamala Krishnan, with a betraying quaver to her voice.
Krishnan’s daughter, Kshetra Srinivasan, admits that this exhortation frequently occurs and usually accompanies a disagreement over something as trivial as a dinner menu that might consist of something as egregious as a green salad. “In India, only cows eat raw food like let-tooce. Here…” Krishnan shakes her head with patent dismay. It’s not really the salad that is the subject of the discourse between mother and daughter. The subtext is helplessness, loss of independence, cultural chasm, and a normalizing process that is frighteningly unfamiliar.
Seniors who immigrate to the United States to live with their children face the daunting challenge of having to adapt to a new way of life. Their frame of reference is limited to their families who, more than likely, are ambivalent custodians of tradition and culture. These seniors face language problems; receive limited or no economic or health benefits; encounter family conflicts; are not fully aware of programs for seniors and are at a loss to spend their time productively. They feel lonely and fall victim to depression and delirium.
Dr. Rita Ghatak, Director of the Geriatric Health Services at Stanford University Medical Center, confirms the cultural issues embedded in older adult care. “Listening and quiet acceptance go a long way,” she replies to my question of how our generation should cope with supplanted elderly parents.
The brochure that is handed to Stanford Hospital patients has this introduction to her program: “Welcome to Aging Adult Services (AAS) at Stanford. This is a program devoted to meeting the needs of older adults and their families and providing them a continuum of care with support and resources.” What leaps out at me is the phrase “and their families.” It seems a much-overlooked aspect of adult care. “The family is the advocating unit for adult care,” Ghatak emphasizes.
Usually medical advice is sought as a last resort among South Asian families. As adults age, common symptoms like tiredness, apathy, and memory loss mask parameters of more chilling diseases such as Alzheimer’s, dementia, and chronic depression. Families are fooled into believing that these issues are part of the natural process of aging. “Besides, anything to do with mood and cognition has stigma associated with it,” Ghatak adds. So even if families are in the know, they sometimes don’t seek medical attention.
Ghatak relates a case where the parents immigrated to the United States to live with their children. The father, who had undiagnosed borderline dementia, had trouble adjusting into the affluent (and isolating) neighborhood, which exacerbated his condition. The family was forced to address the father’s ailment the day he went for a walk, got lost, fell, injured himself, and was taken to Stanford Hospital. The doctors at the emergency diagnosed and put him on a treatment course for dementia, which worked well. But once he got discharged the follow-ups were not performed. Besides overcoming the stigma surrounding the diagnosis of dementia there was the more practical issue of medical insurance coverage.
Insurance is such a huge problem that internist Caroline Stratz blames the system for failing the elderly, calling it, “the Mediocrity of Medicare.” In a heartfelt piece she wrote for the Los Altos Town Crier on January 20, 2010, Stratz agonized about having to withdraw from Medicare because of the steep drop in reimbursement rates. “When I started my practice nearly 10 years ago, colleagues advised me against accepting MediCare patients because reimbursement rates are low.” But Stratz held on to her ideals about the kind of medicine she would practice. Then this year, Medicare reimbursements dropped by a further 20 percent and she could no longer justify the lowered compensation.
The price of healthcare is so steep that, without insurance, the elderly have few options. It is estimated that in 1996, average annual managed care spending for depression was $6,777 and for dementia it was $11,114. So what is the solution? According to Ghatak, to forestall medical costs, the elderly need a regimen of good diet, good exercise, and engagement with the family, community, and society.
Sarada Sankaran’s story is a textbook case of engagement. She is 71 years old and is a self-confessed computer addict. She habitually delves into the brightly lit stratum of our sphere that we call connectivity via cell phone, email, Facebook, and a blog. She drives, watches CNN/MSNBC, practices yoga daily, goes to the library, and is currently working on a Tamil drama script. She is sprightly, alert, and converses with her college-age grandchild well beyond the midnight chime of the grandparent clock. “I’ve adapted to this culture,” she says, “I have no qualms about shedding the sari and donning sweatpants. I’m in this country for my grandkids and I need to be able to relate to them. I believe in the power of now.” Truly amazing! But hers is not the typical story; it is the inspirational one.
Most elderly parents in the South Asian community help the family unit in definable ways: housekeeping, cooking, babysitting, helping with homework and, in some cases, driving grandchildren to activities. It is when role, responsibility, and ownership are not clearly defined that problems crop up. When Krishnan moved into her daughter’s house, she happily took on the task of cooking for the family. However, as the grandchildren grew into teenagers, the idea of eating grandmother’s freshly prepared Indian meals daily challenged their assimilated palates. Krishnan’s role in the household slowly began to erode, leading to her morbid fascination with death and despair.
Isn’t depression just part of aging? According to National Institute of Mental Health, temporary emotional experiences of sadness, apathy, grief, and despondency are normal. However, if these conditions persist, and they interfere significantly with the ability to function, then treatment should be considered. To recognize that a problem exists is the first step to a cure. In most cases, that is probably the hardest step. When parents are burdened with the demands of jobs and rearing young kids, the needs of elderly grandparents are bundled and swept behind the phrase “when I have the time.”
There is a glow in Krishnan’s eyes as she returns from a trip to the grocery store. “The girl there recognized me,” she says sounding breathlessly like a young girl herself. “She gave me this packet free!” Krishnan reaches inside her bag and pulls out a packet of biscuits. Such a small gesture, with such a large reach.
According to Himanshu Rath of Agewell, a charity providing support to the elderly in India, “Collectively we celebrate the old. At home, we often ignore them. We say: ‘Have you had your medicine? Have you eaten?
Here is the remote control.’ And then we get on with our own lives.” Managing Expectations
Initiator of the punctuated Google group, THATHA’s “R” US (thatha means grandfather in Tamil), Krishnamachar Sreenivasan understands how easy it is to fall into a blue state. His resume lists The Mitre Corporation, SRI, Hewlett Packard, and Agilent as employers. He is considered an expert in the field of computer performance evaluation and analysis of multiprocessors. The weeks following his retirement, however, his achievements were cold comfort. “I woke up in the morning and the only thing I changed was my remote battery.” It took great effort and considerable control before he came to grips with his changed situation. “I realized that there’s an unfavorable bias towards seniors. I had to do something to impact people around me.” He started a radio show on KLOK 1170 AM, a community service call-in program that airs every Wednesday from 11 to 12 pm every week, which aims to connect volunteers with those who need help.
Shifting the lens to the other end of the generational view, I queried some teenagers on living with elderly grandparents. “I love my grandmother, but I don’t understand her and she doesn’t understand me,” said a 14-year-old, adding, “She obsesses about food.” A college graduate explained that it was nice to find the warmth of her grandparents when she came home from school. “Not that I shared deep emotional moments with my grandparents,” she added. Her grandparents were there through her middle school and high school and she grew up with lots of religious events, good Indian food, Indian music, and Indian television.
Hesitatingly, she admitted that she’d been more attuned to their company when she’d been younger, but by the time she left for college, there was a large language, cultural, and generational barrier. “I did envy my Caucasian friends who were able to share a deeper emotional bond with their grandparents that was not complicated by language and culture.”
In September 2009, New York Times columnist, Patricia Leigh Brown wrote an article about the 100 Years Living Club, an all-male Sikh group of elderly immigrants. The group meets regularly at a mall in Fremont, Ca. to stave off feelings of isolation and alienation. According to Brown, late-life immigrants come to the country clinging to hopes and dreams of family togetherness, only to find that American society isn’t responsive to these cultural expectations. A Growing Trend
Studies indicate that America’s ethnic elderly are the most isolated group in America and, yet, this group continues to grow. According to the 2007 census, one in three California seniors is foreign-born. It is estimated that the elderly constitute four percent of the global population (419 million) and there are approximately 350,000 Indian American elders, nationwide.
In his book gravely titled The Gray Dawn, Peter G. Petersen argues that, with the increase in life expectancy and decline of birth rates, the numbers of seniors will continue to grow, creating a demographic shift. The magnitude of this shift will result in seniors outnumbering the working age population. This will have a dire consequence on the economies of developed nations. This is partially borne out in Japan where it is predicted that, by 2015, one in four Japanese citizens will be 65 or older. As this shift in balance continues to dilate, Japan is looking at its trade surplus withering into deficit, driving industry and innovation overseas.
As public policy shifts are considered, ethnic seniors need to be part of the proviso. This group’s spiritual, physical, and psychological well-being becomes a critical parameter to social and economic prediction.
Local programs like the Community Ambassador program for Seniors (CAPS) and the India Community Center(ICC) offer a plethora of possibilities for seniors. ICC’s seniors program is designed around clubs and activities from simple socialization, yoga, and Bollywood dancing to round table discussions. Sankaran is an active member of the ICC senior program. Krishnan is a registered member, but finds it difficult to make it to the sessions. Krishnan informs me that conversations at the ICC Senior Center are wince- and wonder-worthy, ranging from daughters, daughters-in-law, financial crises, recipes, oil spill, medical problems, travel to India, and Bombay Jayashree ( a Karnatik music vocalist). Everybody is encouraged to participate.
One Friday afternoon I see Outreach cars pull in like grand limousines at the ICC-Cupertino parking lot. From these cars the elderly slowly emerge like stars, dressed in swathes of silk and serge. They grandly ascend the steps to the facility. I watch the way they enter and mingle with each other. This time, place and moment is theirs. They own it. I quietly leave, reminding myself that my time is just around the corner.
(Names of seniors have been changed at their request to preserve anonymity)
Jaya Padmanabhan is a prize-winning fiction writer and is currently in the process of writing a novel.
Hindi movies like Baghbaan and Lage Raho Munnabhai pillory the boomer generation for contemplating nursing homes, assisted living facilities, and retirement homes for their elderly parents. Newspapers decry the oursourcing of senior care with articles titled “Old Age Homes Against Our Culture.” But the times, they are a-changing. The harsh critical glare of disapproval is dissolving under the circumstances of nuclear double-income family units. Living in elderly group housing with nurses and doctors on call and the ability to talk about “the old days” is sounding more and more attractive. Canadian resident Saroj Sood voluntarily opted to live in a South Asian Assisted Living facility in Surrey, UK. She quoted the Vedas as justification for her move. Sood explained how the last of the four stages of a Hindu life, the “sanyasa” stage, requires renunciation of society and meditative solitude.
In the United States, South Asian elder institution options are limited to just a handful. In my research, I was able to source only two: AristaCare Nursing Homes, catering to elderly Indians, with three locations in New Jersey and Pennsylvania, and a retirement facility, ShantiNiketan, in Tavares, Florida. ShantiNiketan is advertised as a retirement community for Seniors of Indian origin. Iggy Ignatius, the founder of the community project, says that he wanted to give it an “ashram” feel. The gated property consists of 54 condominiums, 35 of which are sold. There are Assisted Living facilities in the Bay Area catering to other ethnicities: Aegis Gardens in Fremont for elderly Chinese and On Lok Senior Health Center in Oakland for Filipino Americans, but none for South Asians. Is our diaspora equipped to handle the growing numbers of elderly?
Outreach’s Senior Transportation Program offers transportation options for seniors that can take them to any destination within the county. http://www.outreach1.org/seniors/seniors_mainpage.html. (408) 436-2865
India Community Center
With locations in Milpitas, Cupertino and Fremont, the India Community Center offers yoga classes for seniors, round table discussions, Jollywood dance classes opportunities to participate in theater, knitting club, bridge club or even a computer class. Subsidized lunches are provided to seniors as part of the program.(408) 934-1130 or check the website: http:indiacc.org/node/293
CAPS – Community Ambassador for Seniors Program
CAPS ambassadors serve seniors and their families by assisting with questions related to identifying local resources, programs, and services in the Tri-City area (Fremont, Newark, and Union City, Ca). Senior Helpline: (510) 574-2041
Stanford’s Adult Aging Services (AAS)
Stanford’s AAS program offers consultations, assessments, home visits, and general outreach assistance. Here is a list of some of the options:
• Geriatric Out-Patient Clinic and Consultation Service (650) 387-6777
• Dementia Support Program (650) 723-1303
• Partners in Caring (650) 725-4137: A program that helps older adults in their homes
• Strong for life (650) 725-4137: A muscle strengthening exercise program
National Indo-American Association for Senior Citizens (NIAASC)
National Indo-American Association for Senior Citizens (NIAASC) started in 1998, serves Indian American seniors across America, “through information, referral and advocacy services.” http://www.niaasc.org/ Southern California
Seniors are encouraged to visit Artesia’s Senior Center where they can form clubs and intermingle. The two big deterrents for South Asians, language and diet, were addressed by the Oldtimer’s Foundation, a community-based organization that began serving a weekly vegetarian Indian meal, cooked by a local restaurant owner and paid for by the county’s office of aging. (662) 272-5276
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.
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. 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.