The Fading Generation: When Love Isn’t Enough

You saw them when you opened your eyes for the first time as an infant. You held their hand as you took your first step. They were there to lovingly lift you up, to wipe your tears and heal your wounds. Today they need to hold your hand as they slowly take each step gingerly towards the twilight of their life, their aged bodies, at times their mind disintegrating under the weight of old age.

People meet, fall in love for better or for worse, and tie the knot. And then “worse” became a reality sooner than they could have imagined.

What happens to South Asian families when a loved one faces a terminal or life threatening illness? How do they cope with the fatigue, the back breaking work, the emotional trauma of seeing a loved one slowly waste away, or struggle before their eyes.

South Asians across America and India share their struggles and their stories in an exclusive with Kavita Chhibber.

The Beginning

His father was a fiery, brilliant academician who rose to the highest post in the Labor Ministry in India retiring as Chief Labor Commissioner. He wrote many labor books on industrial disputes and industrial relations, drafted many labor laws which are still prevalent in India for the protection of the poor labor class. Father was extremely honest…for the poor…would penalize tatas and birlas, etc.. for due compensation for the poor, and yet Subash Razdan an only child, says the earliest memories he has of his father Prithvi Nath Razdan, are of being rocked at the age of five, in his lap as his father sang the lullaby’ Aaja ri Nindiya(I beckon you O sleep), before putting him to sleep.

“Even when I was grown up and lived in the dorm in iit..they would sit away on a bench away from my sight, yet spend time there just to watch me do things such as go to the tennis courts or the swimming pool at the eca or play billiards..Only after a few days I would find out they were there watching me from a distance…they would not tell me about it as they knew I would throw a fit..”

Subash’s mother Kanta was a beautiful housewife who doted on her only son, and when Subash came to study and then settled abroad, the parents chose to stay back in India after his father’s retirement.

Desh Kapoor, who lives in Houston now, was only 14 when his father died suddenly, leaving his mother Santosh Kapoor to handle her grief, raising him and his two younger sisters, and standing against his father’s family who had never treated her well, and wanted to now throw her and her young children out of the family home she had lived in with her late husband.” I remember sitting in the police station at 14, sorting out the mess, while my mother tried to recover from the trauma.” His sister Anuradha Salwan who lives in Indore in India, recalls the fact that her mother was told by relatives that since her income was slashed in half, she should send her son to a private school and let the daughters study in the public schools, since she taught there. What was the point educating girls in an expensive school? “My mother refused. It was my father’s dream too that all his children go to the best schools possible and they scrounged and scraped and ensured that. For years after his death, I remember that we never had any new shoes or new clothes. No one came to visit us and we never went on special vacations. My mother made sure we had nutritious food, and all we did was study. The private school we were in was kind enough to give us a huge fee concession.” Both Desh and Anuradha say they remember their mother as a very strong woman. “She had a favorite mantra “ Man ke hare hare, Man ke jeetey jeetey(The heart loses if you want to lose, it wins if you want to win), says Desh. Anuradha says she never saw her mother sleep. She was always doing something.

Somraj Sharma too was 14 when his father a Professor died suddenly leaving behind young Somraj and his three older sisters, none of whom was married then.” My mother Suhagwanti was a simple lady, a housewife, very loving and kind and she was petrified about the future, not being very highly educated and how she will marry her daughters off.” Slowly things started improving, his sisters got married, and Somraj became an engineer and moved to USA. He sponsored his mother and his sisters along with their families. His mother came to stay with him and his wife Santosh in 1974. “ She enjoyed her time with our three sons and we would not let her do anything,” says Santosh,’ She barely knew how to turn knobs and had managed to learn how to operate the microwave. We just felt that now that she is here we need to take care of her. Her daughters lived down the road from us.”

Parvathy Kancherla remembers her mother Sasirekha as a strong woman who took care of a large family and raised three very bright daughters. After her father died in 1992, Parvathy asked her mother to move to the United States. She agreed and started dividing her time by staying 6 months with Parvathy’s sister in the summer in Detroit and moved to her home in Atlanta for the winter. “ It was interesting that in spite of the language barrier she would be able to communicate with the maids, the care givers while my sister went to work and fended for herself quite efficiently,” says Parvathy who would stay at home with her mother when she visited her.’

Ranjan and his younger brother Anjan Dutta-gupta remember their parents as the head of an extended joint family, where both made numerous sacrifices to take care of 33 people. While both brothers moved to the United States, their mother would visit them off and on but chose to stay in Calcutta even after her husband passed away in 1988. “ Mom is fiercely independent and even though my sister Indrani lives in Calcutta with her husband, she refuses to move in with them and lives independently. She still remains the matriarch and all my uncles and aunts still gather around her for advice and support. She keeps everyone together emotionally and mentally, says Anjan.

For Major General Raj Chhibber, the memories of his mother Saraswati’s courage begin with partition. “ We were at a wedding, and my mother was told not to go back as riots had begun. She left with three of her six sons and her young daughter with only the jewellery she had on. She shielded my eyes from the dead bodies scattered all over and the bus took us to Amritsar where the refugee camps closest to us were set up. I still remember my little brother, mother and little sister sitting on this 22 by 18 steel case with our meager belongings, while my mother sent my older brother, a teenager to find out if there was a room we could rent. She did not want us to be traumatized by the sights and wails of people who had lost everything in the move-family members, their belongings and was worried that we may end up falling sick eating the food there.’

General Chhibber says, his mother’s sacrifices, and her undying spirit and courage made her a tremendous model for her six sons. She went through a major loss when her husband and her youngest child her only daughter died within quick succession, but she pulled herself together raised six sons who all went on to be super achievers. “ Her greatest contribution in our life was the fact that in spite of raising us with so little-there were days we just lived on barley soup-she never allowed us to feel anything but super confident of who we were. She also ensured that no one interfered in the way she raised her sons. The feeling that we were the best that she was very proud if us is what we carried with us. She was in her nineties when she saw her youngest son being sworn in as Governor of Punjab and all the newspapers carried her picture on the front page, blessing him and the chief Minister. My brother and I have often visited that very spot where he sat on this little steel trunk, a young boy, his fate unknown. We are who we are today because of her.”

For Rani Singh and Rita Kapahi, love happened in different ways. Rani and her husband Gurdial grew up together being family friends, Rita a Bengali and Sunil a Punjabi, both engineers met in the US while doing projects through various cities.

Rani says she was busy introducing Gurdial to her best girl friends when he decided it was she he wanted to marry. She was only 20 when they married and then moved to the US in the early 70s. ‘Ours was the greatest love story. I realize today that the love and passion and the joy we found being with each other is a very rare thing. My sons keep telling me Mom you should write about it. It’ll make a great film.!’

Sunil says he found Rita found very easy to talk to and today he still calls her his best friend. Yet the day he told her he had feelings for her clutching a cushion as he sat across from her, Rita laughed at him and told him not to harbor such feelings. “Firstly I was a Bengali, and he a Sindhi Punjabi but most importantly there had never ever been a love marriage in the family. I told him his family would not only, not welcome me, he would get yelled at as well. Then he said dramatically – you are not marrying my family you are marrying me! He kept calling and came up with a great filmi line – mere saath chaar kadam chal ke toh dekho (at least just try walking four steps with me)!”

When she finally gave in and Sunil informed his mother that he was interested in Rita, just Rita’s name was enough to have the family in a tizzy.” They thought I was a Christian because of my name and perhaps some fast moving, short skirted floozy who had ensnared their poor innocent boy!” The marriage took place and the couple went on with their lives and had two daughters Sunita and Vineeta.

Lives Unraveled

Somraj and his wife Santosh say that somewhere in the late 70s they started noticing bouts of forgetfulness in their mother. “ She would have very vivid memories of the early years, and yet she would forget who I was. She would forget where she had kept her things, whether she had eaten.” She would mistake her daughter-in law as the bride her father had chosen for her brother. She would have great lucid moments and then lapse into a blank haze when she would forget everything. While physically she was in perfect health, her mind began to unravel. ‘ Initially the doctor told us it was age related and gave her some medicine,” says Santosh, and for some years her decline seemed to have stabilized, but there were moments when she would walk out the door and end up on the main roads. Even the neighbors began to keep a look out for her. Once a cop found her wandering on the streets and took her to a nearby Indian store where she managed to give her last name.” The store keeper remembered a lady by the name who had come in, pulled her check out and called her. Fortunately it turned out to be Som’s sister who came to get her.’ Says SANTOSH. The couple had started a business and were able to take turns to stay at home watching her, but soon things began to deteriorate rapidly.

“She would soil herself not knowing what was happening. We’d put diapers on her and she would yank them off..at times she would soil herself all over the carpets If I tried to bathe her, and just turned away from her even for a minute to get a towel or a soap she would run out of the tub and be out of the room. We tried hiring a nurse but that didn’t help. The nurse tried putting a catheter so that she would soil herself but she would yank it off. Both my husband and I had to be there to change her diaper or bathe her as we could not do it single handedly. She would sit for hours counting coins or tying knots on a piece of wool or a rope if we gave it to her. My three sons would feel so sad seeing their grand mother deteriorate this way. My husband finally gave her a string of beads and asked her to recite Lord Krishna’s name. she fought against it but he kept on insisting. Finally whenever he would come home she’d take on look at him and start chanting Krishna, Krishna..towards the end that is the only thing she remembered. She stopped recognizing everyone, and would just mumble Kishna Kishna when she saw anyone.

One day recalls Santosh, her mother in law fell in the bathroom and probably got up and went abut walking. It was at night when Somraj and Santosh were changing her clothes that they felt a bone poking out of her hip. They asked if that hurt and she said-a little bit.” We rushed her to the hospital and found that she had broken her hip. She never walked again.”

For Desh and Anuradha, their mother was the epitome of strength, determination and boundless courage. In spite of the struggles in her life, the tremendous stress under which she had lived each day, a hysterectomy and diabetes, Santosh Kapoor continued through life with dogged determination. Yet little things started happening.” Mom would forget appointments, and what she had said just 2 minutes ago, yet she would talk with such vivid detail about her childhood,’ says Desh. When prospective grooms came to see her, her mother would forget which company Anuradha was working for. “ She started getting angry at co-workers, started mistrusting even her own family including my brother and me,” says Anuradha and adds.. ‘ She was very hurt that people were not treating her well at work, not realizing it was she who was at fault. She was in her late fifties and we took her to the best doctors, only to be told the memory loss could be diabetes and hysterectomy related. Many women tend to become forgetful after a hysterectomy. The doctor gave us some medicine.” Their mother’s condition seemed to stabilize and she spent half her time in the USA with Desh and his second sister and the other half in India.

‘ I think her biggest trauma came when my father’s sister insisted on selling the family home where she had lived all her married life and after. I saw my mother scrounging and saving to improve and decorate that home. When the new owner threw all her belongings out on the street, it accelerated her mental breakdown.” Anuradha’s mother would leave the apartment they bought her near by and walk back to the house standing outside it. She forgot she had retired and would show up at her office and sit before the same clerk each day. Anuradha was in Chandigarh and would beg her mother to come and live with her when the neighbors called telling her to take her mother away because she is in a constant state of agitation. ‘ My husband is in the army and was away on deputation and I would tell her mama please come I need you. She would come for a few days and then get restless and want to go back. Desh once asked his sister to send her mother on a group pilgrimage. “ My mom is very religious and he wanted her to go on this guided tour which is done by train because he didn’t want her to regret not having gone. Two days later we got a call from someone in charge that our mother was totally lost and had been totally in a forgetful haze. I begged with them to take as much money and bring her back, which they did. Since then we have not left her alone. Until last year Santosh Kapoor was dividing her time between Anuradha and Desh. She was able to take care of herself, but would repeat the same things several times. She would know Desh was her son but would forget his name.” Desh was planning to bring her to live with them permanently but on her last trip back as her daughter packed to move to Indore with her husband who had returned after 4 years, the shifting and moving made something snap. Whether packing of bags, brought back the trauma of moving her out of her home which had been sold, or something else, her mother had a major breakdown.

A detailed medical check up showed that half of her left brain and three fourths of her right brain was not functioning, and that the brain damage was permanent. Soon she started wandering into the night, soiling herself, crying and wailing for no reason. She would keep walking non stop for hours. At times she put on weight due to steroids that they put her on, then lost too much weight. One night she walked out at 1 a.m. and was found walking ahead, another tie she refused to recognize her son-in law suspiciously asking her daughter why she was hanging out with this guy? “ Each morning she wakes up smiling and walks out not knowing she has soiled herself, and these two maids that I have kept for her, grab her and take her into the bathroom against her protests. She doesn’t know why she is being stripped and washed. It’s like a daily physical and emotional rape. Her cries reverberate in my ears even when she is not crying. In her lucid moments she says Anu I don’t know what I’m doing. Why is this happening to me?” twelve years later, after running from pillar to post and being told one thing after the other, they had their final diagnosis-Alzheimer’s.

While Anuradha wants to move back to Chandigarh where her in laws live and she is very familiar with the city, she is afraid to move because she worries another move may spiral her mother down to total mental breakdown.

For Subash, it was his mother’s diabetes and heart problems, that made him bring both his parents to the US to live with him, but it was his father whose health started failing.

“At one point, both my mother and father had two extended visits each of 45 days to the hospital in one year. He felt very bad that he was being dependent on us…he had reached a stage where he was not able to control his occupational habits. He had had a heart attack, a stroke and started Alzheimer’s. There were times when he would look at me in tears and murmur that he is losing the will to live-then next moment he would say he wants Rahul my older son to get married soon. Both my sons Rahul and Rishi were very attached to him.

Parvathy Kancherla’s mother did very well until 2003, and managed to live comfortably with the help of care givers even though she had slowed down and needed help with bathing. In 2003 around thanksgiving time, she slipped in the bathroom and broke her leg. “As long as she had the cast on she did fine but the moment they removed the cast she developed this acute paranoia that if she stood up she would fall, “ says Parvathy. Her mother has never walked again. Already one of her arms was affected by arthritis. Now her legs started to atrophy She started soling her bed, refusing to even sit on the commode next to the bed. Then she fell off her bed. ‘ It was a very hard time struggling to handle her disability, but I refused to accept that I couldn’t make her any better.”

For Ranjan and Anjan, their mother’s failing health a couple of years ago and her refusal to come ad live with them in the USA has been a major issue to deal with.” It is ironic that our parents took care of an extended family and made so many sacrifices, both Ma’s sons are not with her. We have taken care of things financially and she lives in her own home surrounded by nurses, but she almost died this past January and it makes it that much harder to live with the guilt,” says Ranjan.

Rani Singh’s life turned topsy turvy soon after her in-laws came to the USA My sons are Bobbin and Jairaj who is 19 now. They had come for his first birthday in 1987. My husband was 44 when he was diagnosed and 53 when he passed away, after 1 year of lung transplant. Hope this helps. The pictures I sent you are our old pictures ( the one in the sari is around the time he was diagnosed). Hope this helps. to celebrate their grandson’s first birthday. “ My mother in law had a series of heart attack, my father in law was diagnosed with pancreatic cancer and given 3-4 months to live and a month later my husband a super athlete, went for a check up because he couldn’t shake off a cough and after a battery of tests where they first thought it was lung cancer, was finally diagnosed with what they called for want of a concrete diagnosis “ lung disease with unknown etiology.” They gave him 2 years to live.” Rani says it was her deep faith that kept her from going off the deep bend and the fact that she adored her in-laws and her love affair with her husband continued to intensify. “ He would look at me and say-it’s the love in your eyes that keeps me going. Even before this catastrophe hit, we were the best of friends and believed in living each moment to the fullest, and now the uncertainty made us even more determined to cherish our moments together.” What followed was incessant visits to the hospital where she also worked, with the several patients who lived in her house on three hospital beds. “ There were times I’d watch my mother in law all night in the hospital, sleep on a bed there itself, wake up and go to work.”

For Rita and Sunil as they began their new life together, unknown, dark clouds had already started swirling around.

Sunil had been suffering from what they thought was Spondalytis off and on, but actually turned out to be his immune system attacking itself. By the time the true problem was finally diagnosed in 1988, Sunil was well on his way to complete kidney failure. “ He was told kidney failure would occur in 10 years, it happened in five,” says Rita. “All he needed was immune suppressants and he would have been fine. Instead the doctors continued giving him medicines like ibuprofen for the pain thinking it to be Spondalytis.”

Then came the rounds of hospitals for dialysis, a sudden disorientation resulting in a stroke. Two and a half years later after his kidney failure in 1993, Sunil received a kidney and responded very well and felt healthy enough to go back to work, play tennis regularly but then the kidney rejection began and along with that came epileptic seizures..

From that moment onwards, since the mid nineties, Sunil Kapahi has been on disability and at home, not permitted to drive or even take walks alone for fear of getting hurt when a seizure comes.

Rita has hung in there for several years, handling an elderly mother in law who was ailing, raising two young daughters Sunita and Vineeta and dealing with Sunil’s bouts with depression as he comes to term with the fact that the stroke and the seizure have wiped out his short term memory so he can’t work.

Sunil would invariably have some problem or the other and they have become a permanent fixture at most hospitals. “It’s quite funny when busy doctors and surgeons who are always rushed for time and see thousands of patients would see me shopping at Kroger and walk up to me and ask, “How are you Mrs. Kapahi?” laughs Rita. “ We are probably the most recognized family in hospitals around town!”

In a life that is not normal and each day is fraught with uncertainty where Sunil is concerned, they were trudging along when Rita started noticing a sudden change in Sunil’s voice last year.. A check up revealed cancer of the esophagus. Unfortunately the way the tumor was situated, the doctors said they would have to remove the voice box.

Today , Sunil has gone through chemotherapy and radiation, moments of severe depression and helpless anger as he struggles to relearn how to speak again through the metallic device pressed against certain areas of his throat. When he finds the sweet spots things work well, when he doesn’t he gets frustrated and angry if he isn’t understood right away. Sunil is now discovering new facets to his own personality as he struggles with feelings of low self esteem, the fact that he hasn’t worked for close to a decade. He has been writing, and discovering in the process an ability to tell stories that are captivating. Sunita who loves writing herself is helping him edit and brainstorms with him. She also steps in when tempers rise and patience snaps and she sees her parents arguing. “I tell them you have gone through so much together for 20 years, so just hang in there. I tell my dad I expect to see him around when I get married and play with my kids, so he had better stay positive.”

The future remains uncertain, but Rita says human beings cannot be relegated to being mere statistics. “When Sunil got the transplant, he was told for the kidney to survive rejection, the success rate is 90 percent, in the first year. It goes down to 70-80 percent in the 2nd year and after the third year there are no guarantees. It has been 10 years since Sunil’s transplant, with God’s grace. It’s now the same thing with his cancer. The statistics are again scary, but I believe tremendously in the power of prayer and the human will to over come obstacles and I know we will make it.”

Choices and Consequences

Faced with the seemingly endless days of taking care of their loved ones, for a South Asian where loyalty and love are dominant emotions, are nursing homes an alternative? With the exception of Parvathy Kancherla, all the care givers worked , as did their spouses.

Some of the care givers tried to get assistance, yet none could afford full time live- in professional help in the US on a permanent basis. In Sunil’s case even counseling was not an option, because in spite of bouts with depression intellectually Sunil doesn’t fit the criteria for counseling. In spite of his stroke his IQ is above the 85th percentile, and he has a family to turn to. Even though he answered several questions related to being depressed in the affirmative he was told by the psychiatrist they couldn’t do anything in terms of rehab.

“The question of sending my in-laws to a nursing home simply did not arise. I took care of them against all odds,” says Rani. “I was very young and didn’t realize they were eligible for Medicare and ran up a huge debt.” The hospice people were very kind and sent beds and a doctor to come over and volunteer to sit with her father –in law, but there was a language barrier. “I wished that there were people, even some of my friends who could just come over and sit with him and talk to him, or pray with my in-laws because I was busy running around doing so much”. Rani says she realizes now that she shouldn’t have been embarrassed to ask for help. “I will never regret not sending my in-laws or my husband to a nursing home. In fact my husband was active till the last day and continued to work. At the same time, I wish people would not be judgmental about decision others make, as I saw when we decided to remove the life support from my husband after complete organ failure. Each decision and each choice is individual.”

Somraj Sharma’s doctor would not allow his mother to return to the house and she was sent to a nursing home straight from the hospital. “He felt we will not be able to take care of her at home and it was better for everyone that she was sent there,” say the couple. They would go to visit her every day twice a day, and yet while she lovingly touched everyone she simply did not recognize anyone. “ She would stroke my hair and the only word she would utter was the one my husband insisted she chant-Krishna,’ says Santosh.

Suhagwanti remained in her own world, and never emerged from that haze until the day she died four years later. While the nursing home was recommended by the doctor, the Sharmas did see signs of abuse. Once Somraj saw a nursing aide hitting an old patient, another time Santosh noticed her mother in-law’s food was dribbling and falling on her as they had given her a spoon to feed herself instead of feeding her and took the nursing aides to task “Our elderly parents come here , and life is already like a jail for them,” says Somraj, ‘sending them to a nursing home seems a horrible choice, but we console ourselves that when she did go there, she had stopped recognizing everyone.”

Subash says the whole experience was very challenging, “but it brought the entire family very close to each other. We were provided very tough choices of putting both parents in a nursing home by the social worker in the hospital. We even visited a few nursing homes, and decided against it. I could not have managed if I did not have an understanding family, especially my wife.”

Though it was very taxing emotionally and financially, says Subash, the satisfaction of having his parents with the family compensated for all other anguishes. “We have been very much at peace with ourselves. I probably would not have been able to live with the guilt of putting them in the nursing home.” Having said all this, Subash hastens to add that if the nursing home is a good one, the alternative may be worth exploring. ‘The most important thing is that the children must visit the elders, if not daily, at least every other day as the parents have their eyes glued to the door in anticipation of a visit from their kin. I worked as part time administrator in a nursing home while in school, to pay my tuition fees. In one case, one elderly lady would keep saying constantly that her son would be coming but 9 out of 10 times he did not..”

Parvathy Kancherla says she tried her level best to get her mother to walk, with loving cajoling, having a physiotherapist work with her and even changed the rehab people in the hope that something would work, but it didn’t. Finally her son, a cardiologist and her family physician told Parvathy she had no choice but to send her mother to a nursing home. Sasirekha was not going to get the care she needed at home.

Parvathy’s daughter Sreeratna, an attorney did all the research and they finally found a nursing home 10 minutes away from home. Sreeratna says the government website Medicare.org has all the nursing homes listed by city and their performance results. Consumer reports too does the same thing, but it is up to the family of the patient to make sure that they get the best service. ‘You must go and check out the nursing home again and again, keep and eye on your loved ones and make sure you talk regularly to the care givers and get to know them. We saw a bruise on my grand mother once and immediately asked what had happened. Most importantly find a nursing home very close to you-no more than 10-15 minutes’ drive.”

“The first day I left my mother there, I came home and sobbed all night,’ says Parvathy, her voice still cracking with emotion even though her mother has been in a nursing home for two years and is being well cared for. “ My husband saw me sobbing and said okay let’s bring her back and see if we can still manage, but in spite of the rehab people working with her, she refused to walk. Today state law prohibits patients from being physically lifted from their bed to the wheel chair, and a machine does it. There was no way I could have replicated that at home.” Parvathy goes to see her mother every day, feeds her herself. Sreeratna says the staff there is mostly African, and they are extremely compassionate and loving. they understand her grand mother’s needs in spite of the language barrier. While Sasirekha’s body is failing her mind has become very alert. “I was told the reason for that could be that she has to speak with so many people and communicate her needs,” says Parvathy. Recently however Sasirekha has started asking her to take her back home. “ She misses the social interaction, because no one speaks her language. She understands our constraints, but I would go home crying, each time she would ask.” A few weeks ago Parvathy decided to take her mother home for a few hours just to see how it played out. “ It was for a few hours but even to get her out from the car to her wheel chair was so tough and we struggled through the day, until she herself said-please take me back, but I still live with the guilt every day.”

Desh too lives with the daily guilt of not being able to be with his mother. “ She doesn’t remember my name but knows I’m her son and asked very emotionally the last time I was with her why I took so long to visit her.” It is however Anu who is exhausted and stretched to the limit while taking care of her mother, working a full time job that involves travel, and trying to reconnect with her husband who has returned home after 4 years but not finding the time. “I am way too qualified for the job I have but I’m afraid to move in case it makes her spiral down wards even more. My kids are petrified of old age and though they are very young, they keep asking me if I will become like my mother when I grow old. I have no time to spend with my husband, ever since he has returned and I can see my marriage getting affected, but after staying awake with Mom in her room for days and then dragging myself to work, not sleeping even four hours for weeks, I’m exhausted emotionally and physically. There are days I drive on the highway and wish a truck would crush me.”

The thought of putting her mother in a nursing home is something she will not even consider. “My mother will die. Even though she is in an advanced stage of Alzheimer’s she knows she is with family. In her lucid moments she asks-tum mujhe chod to nahin dogey na? (You won’t desert me will you?).The doctors say her vital signs are all very strong, and she can go on like this for the next 20 years. I said to the doctor that by that time I will be your patient.” Desh and his other sister Neelam are going to India to give Anuradha a break, but it’s a temporary arrangement. “I can never repay her and my brother in law Jatinder. He has cleaned my mother, put up with a lot and helped more than I as a son could have, but I don’t know what the long term solution is.” Neither does Anuradha.

Ranjan and Anjan say that if it was not for their two brothers in-law Subroto and Tapan Sengupta who have supported their sisters, they don’t know how they would have managed either. Ranjan adds, “When my father fell sick and we took him to Bombay, it was my older sister Shibani’s husband Tapan who sat at the hospital for days taking care of him till he passed away. Now it’s my other brother in law Subroto, an incredibly bright man who could have reached dizzying heights of success, but has turned down promotion after promotion for years, so that he doesn’t have to leave Calcutta and my sister Indrani can stay close to my mother. He just turned down the biggest promotion of them all because it meant moving to Delhi. He says if it meant having our mother in our midst for longer, the promotion means nothing in comparison to that blessing.’ Indrani has survived major surgery for a brain tumor while taking care of her mother, and still insists on taking care of everything.

“This is the sister who should have at least four breaks in a year,” says Indrani, Anjan’s wife, of her namesake,’ but gets one in 6 years.’ Anjan says on one hand his sister has become very paranoid and obsessive –“ her conversation is nothing else but mom and her ailments,” but on the other hand they were able to save their mother’s life because of her. “She saw some symptoms that the nurses hired round the clock missed and we insisted on taking her to the hospital, where she collapsed and had no heart beat for several minutes, before she was revived.”

The thought of putting their mother in a nursing home is again something the brothers balk at. “ If I did that people will spit on me,” says Anjan. “There are some good nursing homes built specifically for parents of NRIS but they are very exorbitantly priced. I can afford to pay for it but why would I not use the same money to keep my mom home and have nurses round the clock for her? Plus there is still a stigma attached to sending your parents to an old age home no matter how fancy it may be. It will break her heart, that not only are her sons not living near by to take care of her, we have dumped her in a nursing home.”

Ranjan was all set to move to India, leaving his 19 year old only son Ravi and his wife Indra in the States for the next few years to be near his mother, but it was she who put her foot down. “She said your place is beside your wife and son- you must not come here. When I turned down the offer from my company they said are you out of your mind? This is a huge offer. I said yes, but my mom said No. They were even more aghast- your mom said what? Where does she come into the picture? But that is how it is-her word is the last word. Even today much as she would love to have her son with her, she is thinking of his son and his wife.” Says Ranjan emotionally.

Anuradha says today her dream is to create a state of the art nursing facility for people like her mother. She is trying to see options as she struggles with so much and refuses to give up on a mother who bent but didn’t break under the heavy burdens she carried for years. General Chhibber talks about the need for better alternatives for the aging population. ‘ My mother was 104 years old when she died. Fortunately for us she was not sick for too long and we had the resources to take care of her at home with round the clock medical supervision. I was by her side 24 hours and she was sharp till the end.

However the world has changed. In the old days everyone had at least 5 or 6 children and the identity of the children was determined by who their elders were. The question often asked was-so who is your grand father? ‘ People had simple need and everyone lived in a joint extended family. Today when you look at the politicians, the children, the social workers-every one wants to fill their stomachs and pockets first. In all this, the aging population has become a surplus commodity. I had wanted to start a home for old retired army personnel but found that their pensions were a great attraction for their kids. Many of them would ill treat their parents but not let them leave to live on their own because they could use that extra money.” He feels that every elderly person must be financially self sufficient and be able to hire help in case of need.

Dr Amita Dave apart from her practice also works at a nursing home and says it is always preferable to keep your elders at home. “ When our parents come here they leave so much behind. In India they just have to open the window and they see people, or friends drop in any time unannounced. Here they are left by themselves for hours while their children are at work, and they need that social interaction. My father is 84 and lives with us. I see how his eyes light up when my son comes home from Chicago and holds his hand to take him to the dining table. That loving touch means a lot to him.”

Questions

When they fall sick the elderly want to go back to their roots, their culture, speak their native language. Rani says she wishes there were volunteers to talk to her father in law, or do prayers with her mother in law in their language. “Both my husband and I were working and my in laws used to long to have some social interaction. They would wait for Sunday so anxiously when we could take them to the gurudwara. I wish there was someone who could have taken them since I was handling so much- running around with work, doing groceries, taking care of things.”

Parvathy wishes someone would pick up her mother’s friends who are still mobile and live with their children , and bring them to the nursing home, so that she could have some social interaction. “ I’m the only one she sees each day. When my kids are in town they come to visit her, as do my sister’s children with their family. She recognizes every one, and is so happy to see them, but most of the days its just me and she misses chatting with her friends.”

Anuradha says in years to come India will be left with a hugely aging population as the younger generation goes out to conquer the world. What of the elderly then? Who will take care of them?

But in the US, Anjan’s wife Indrani says the same thing, “ I wonder where my husband and I will go in our old age unless death suddenly happens. We don’t see our children settling down any where near us since their careers will take them elsewhere. We didn’t do it for our parents, either.”

Somraj and Desh say that they don’t want to be dependent on their kids and would like to go to a nursing or assisted living home. “After all, our tradition of Vanprasth was exactly this-where the elderly went to the van(jungle) and lived in a sanctuary there for the old,” adds Desh.

Bringing Hope

Most baby boomers feel the biggest problem of putting their loved ones, especially the elderly in nursing homes is the language barrier, the food and the loneliness of being surrounded by people who are not family or from the same culture. General Chhibber says today they will save every one. What do you do with that aging population? Dr Amita Dave agrees citing the example of a 93 year old woman they revived 5 times even though she was a vegetable because insurance paid for it. It is really important to find a solution that makes it easier for every one.

Enter Dr. Mukund Thakar and his wife Rama, who bring hope through a pioneering project that has been a grand success since its creation last July. Mukund Thakar was a practicing physician in India before coming to the United States in 1989. ‘I have worked at the Alameda center which is a 32 year old nursing home in New Jersey for the past 16 years. As I looked around me, I saw lonely, isolated elderly South Asians, who were very depressed. They passed their days not knowing what to do with their life or their time, as their kids went to work and were away for hours. It is not that we don’t love our parents but life in America is definitely not conducive to communal living. Often, both partners work long hours. When the elderly fall sick or just get old, they are put in nursing homes where many of them can’t speak the language, don’t like the food, so they stop eating and die of heart break. I have seen the children sobbing when they come to drop their parents or loved ones off. They feel as if they are deserting them.”

It was then that Dr. Mukund thought of creating a South Asian environment for these patients. “We converted the fifth floor to an Indian floor. The decorations are all Indian, we have four Indian cooks cooking different cuisines of India, we have a temple with prayer sessions, a common room where people can mingle and chat, celebrate various Indian festivals and have interpreters who speak several Indian languages.”. His wife Rama says they even cater to people who keep religious fasts preparing special dishes for them. Rama heads the prayer session and is Assistant director for the program. “People come here both for short term and long term care and don’t want to go back. One elderly gentleman and his wife were sobbing when their rehab was over. They were asking their children to raise their insurance so they could stay on here forever.’ They tell us, ‘ What will we do when we go home? Here we have made so many friends, we get piping hot, freshly made food every day, while there we have to heat cold food from the microwave and eat, and we stay by ourselves till 7 p.m. daily. Please don’t send us away.’

Since the floor was created, Dr Mukund says they have healed and sent many patients back home. A few were too old to go back and passed away, and some are still being treated. All were incredibly happy at the facility. “ At present we have about 54 patients but word has spread and we have been getting so many calls from all over the country asking us about our facility. I will be happy to help anyone who wants to start something similar in their city, but not if it is a business deal. Every thing is paid for by Medicaid and Medicare here.” Dr Mukund says he calls the place the temple of the mother and father. “ People still balk at the mention of the word nursing home, but here we create a loving environment for our parents who are revered in our culture.”

Parvathy Kancherla is very encouraged by the model Dr Mukund and his wife have created in New Jersey as is her daughter Sreeratna and husband Aruna Prasad. They want to start something like that in Atlanta where they live. Rita hopes that along with a project like this there will be volunteers and organization who can help people like herhusband. “His mind is extremely alert and physically too he is capable of doing a lot. If a trained certified nursing assistant could take him out and about, or even to some place where he could mingle with others, even help others, it would be great. He is stuck at home all the time and that adds to his depression. But his seizures come unannounced. Earlier on he would repeat certain phrases just before the onset and that alerted us. Now with his voice gone we don’t even have that. Someone has to know how to handle him after a seizure because for the first 30 minutes after he regains consciousness he doesn’t remember English.”

Rani says while she had craved assistance, she also wishes she had the guts to tell people what she needed. Today in her own way she is reaching out to others. ‘I just ask what can I do to help without passing judgments, or waiting for others to ask for help when I see a need.” She too would love to be part of an initiative where South Asians in need of help can turn to a nursing home or volunteer services for in-house help. In India some state of the art nursing homes geared towards parents of NRIs have sprouted, but Anuradha wants to create something that would be accessible and affordable for every one.

Mrs. Pushpa Narula nursed her husband, a retired Army general, through ill health and several strokes. She also took care of her father in law , who outlived his only child and says that in India there is still no tradition of letting your loved ones die anywhere but home. “ I live in an army colony of retired and semi retired people, along with some youngsters. Two of the ladies I knew died of Alzheimer’s but their husbands and families took care of them at home and hired nurses. Even in the elderly homes, very often when the person in on his deathbed the family is asked to come and take them home.”

Pushpa refused to put her elderly father in law in a state of the art home for the elderly even for 4 months when her son asked her to return to the USA with him after her husband’s death just for a change. ‘ I said my father in law will be heart broken. He had started becoming forgetful, even though he was physically very fit at 90, and I felt he will think, now that my son is dead my daughter-in law has turned me out. I could never do that to him, for a few months of relief.”

A good friend of Pushpa’s has made an beautiful home for the elderly near by in Pune where she lives. “I went to see it. Its gorgeous, and clean. They grow their own vegetables, have their own cows for milk and the living areas are like five star accommodations, but when I just mentioned to my three sons that may be I should sell my 4 bedroom apartment and move there, they were very upset. I may be more comfortable there but they feel very uncomfortable about having their mother in what is considered a home for the elderly. It gives a sense of abandonment.”

South Asians have built hundreds of temples and gurudwaras running into millions of dollars as they compete with each other to reach God. Perhaps it is time to focus on those who need our love and care on earth first.