The Fading Generation
South Asians with family members suffering from terminal illness on the emotional trauma of seeing loved ones slowly wasting away before their eyes.
Sometime in the late 1970s, Somraj Sharma, an Atlanta entrepreneur, recalls noticing bouts of forgetfulness in his mother Suhagwanti. “She would have very vivid memories of the early years and yet she would forget who I was, where she had kept her things, whether she had eaten,” says Sharma.
“Initially the doctor said it was age related and gave her some medicine, though he was suspecting Alzheimer’s,” adds his wife Santosh.
There were times when Suhagwanti would walk out the door and meander on the highways. Even neighbors began to keep a lookout 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 and was reunited with family.
The Sharmas, owned a liquor business, so took turns to stay at home to watch over her. Soon, however, things began to deteriorate rapidly.”
She would soil herself all over the carpet not knowing what was happening,” says Santosh. “We’d put diapers on her and she would yank them off. She would run out of the bathtub and be out of the room. We tried hiring a nurse, but that didn’t help. But we just couldn’t bring ourselves to send her to a nursing home.
“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 grandmother 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 insisting. Towards the end, she stopped recognizing everyone, and would just mumble ‘Krishna, Krishna’ when she saw anyone.”
One night when the couple was changing her clothes they felt a bone poking out of her hip. “It seems she fell in the bathroom, but was able to get up and didn’t feel much pain. We rushed her to the hospital. She had a fractured hip and never walked again.”
Santosh Kapoor lived life with a dogged determination to raise her three children after her husband died in 1983, when her oldest son Desh, now an IT consultant living in Houston, Texas, was only 14. For years she struggled with diabetes and then a hysterectomy. Her daughter Anuradha says she never saw her mother sleep as she was always doing something. And son Desh recalls, “Mom had a favorite mantra “Man ke haarey, haarey, Man ke jeetey, jeetey (The heart loses if you want to lose, it wins if you want to win).
But then she began to slip away. “Mom would forget appointments and what she had said just two minutes ago. Yet she would talk with such vivid detail about her childhood,” says Desh.
She would forget the company her daughter worked for. “She started getting angry at co-workers, started mistrusting even her own, family including my brother and me,” says Anuradha, who lives in India. “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.” The medication seemed to stabilize her.
“I think her biggest trauma came when my father’s sister insisted on selling the family home where she had lived,” says Anuradha. “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 begged her mother to come and live with her, but neighbors complained about her constant state of agitation. ‘My husband is in the army and was away on deputation. She would come for a few days and then get restless and want to go back.”
Desh once urged his sister to send their mother on a group pilgrimage, which had been one of dreams. “Two days later we got a call from someone in charge that our mother was totally lost and in a daze. Since then we have not left her alone.”
Until last year Santosh was dividing her time between Anuradha and Desh and managing reasonably well. But as Anuradha packed to move to Indore with her husband who had returned home after four years, something snapped in her mother. “I don’t know if packing and moving brought back the trauma of being thrown out of our ancestral home or something else, but mom had a major breakdown.”
Santosh started soiling herself, crying and wailing for no reason. One night she walked out of the house at 1 a.m., another time she hrefused to recognize her son-in law, suspiciously asking her daughter why she was hanging out with another man. Anuradha adds, “Each morning she wakes up smiling and walks out not knowing she has soiled herself. Two maids 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 echo 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?'”
A medical diagnosis revealed that half of her left brain and three fourths of her right brain were permanently impaired. Twelve years later, the family finally has a diagnosis – Alzheimer’s.
The earliest memories Subash Razdan has of his father Prithvi Nath Razdan, the chief labor commissioner in India, are of being rocked by him to sleep to the lullaby, “Aaja ri Nindiya” (I beckon you ‘o sleep). “Even when I was grown up and lived in the dorm in IIT, my parents would sit on a bench away from my sight, just to watch me do things. They would not tell me about it as they knew I would throw a fit.”
After his mother developed diabetes and heart problems, Razdan, a civil engineer and an only child, brought his parents to live with him in the United States in 1992.
Soon his father’s health began failing. “At one point, both my mother and father had two extended visits each of 45 days to the hospital in one year. Dad felt very bad that he was dependent on us. He had reached a stage where he was not able to control his occupational habits. He had a heart attack, a stroke and Alzheimer’s.
“There were times when he would look at me in tears and murmur that he is losing the will to live, then the next moment he would want Rahul, my older son, to get married soon. The night before he died, he didn’t want to go to the dining room to eat, but looked at me with tears in his eyes as if trying to express, through his eyes that he cannot take it anymore. He passed away the next morning.”
Rani Singh’s life turned upside down soon after her in-laws came to the United States to celebrate her second son Jairaj’s first birthday in 1987. “My mother in law had a series of heart attacks, 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, couldn’t shake off a cough and was diagnosed with what they called, for want of a concrete diagnosis, ‘lung disease with unknown etiology.’ They gave him two years to live.”
Rani, a professor at Emory University, says it was her deep faith and the fact that she adored her in-laws that kept her from going off the deep end. Her love affair with her husband, whom she married when she was 20, “the greatest love story,” she says, only intensified.
“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 were incessant visits to the hospital, where she also worked, besides coping up with three patients in her house. “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.”
Though her father-in law died shortly after his cancer diagnosis, Rani’s husband went on to live for 10 years. “He received a lung transplant and did very well for the first year. Then the doctors took some bad decisions against my wishes, a nurse overdosed him and his organs failed. Just before he died he said to me, ‘Even if something happens to me I have no regrets. I have lived a full life. The only thing I have not had enough of is you.’ Those were his last words to me, and to this day I feel his love surround me and that is what keeps me going.”
Choices and Consequences
Even faced with the seemingly endless task of taking care of their loved ones, many South Asian families are resistant to turn to nursing homes, which is usually the solution for similar patients in the mainstream.
“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. “But I was very young and didn’t realize they were eligible for Medicare and ran up a huge debt.”
The hospice sent beds and a doctor 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.”
But Rani says she never regrets not sending her in-laws or her husband to a nursing home. “In fact my husband continued to work till the last day. 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. I wish I had more help and had not been so embarrassed to ask for it.”
Somraj Sharma’s doctor would not allow his mother to return to the house and she was sent to a nursing home 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,” he said. They visited her daily, but 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. The Sharmas say they were dissatisfied with her care at the nursing home. “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.”
Razdan says the experience of weighing a nursing home for his parents was very challenging, but brought the entire family very close to each other. “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 Razdan, the satisfaction of having his parents with the family compensated for the anguish. “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.”
Nevertheless, Razdan hastens to add that a nursing home alternative may be worth exploring for other families. ‘The most important thing is that the children must visit the elders, 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 and 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’s voice still cracks with emotion when she talks about moving her mother to the nursing home nearly two years ago. “The first day I left my mother there, I came home and sobbed all night.”
She remembers her mother Sasirekha as a strong woman who took care of a large family. After her husband died in 1992, Sasirekha moved to the United States, dividing time between Michigan and Georgia to be with her daughters. Says Parvathy, “It was interesting that in spite of the language barrier she was able to fend for herself quite efficiently.”
In 2003, her mother, then 83, 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 Kancherla. Her mother has never walked again. Already arthritic, her legs started to atrophy. She began soiling her bed, hrefusing to even sit on the commode next to the bed. One day she fell off her bed. “It was very hard, struggling to handle her disability on one hand and not being able to accept that I couldn’t make her any better.”
“But in spite of the rehab people working with her, she hrefused to walk. Today state law prohibits the patients to be 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.”
Kancherla says her cardiologist son and her family physician told her she had to send her mother to a nursing home as she was not going to get the care she needed at home.
Her daughter Sreeratna, an attorney, researched nursing homes on the government website medicare.org, which lists nursing facilities and they finally found a nursing home 10 minutes from their home.Says Sreeratna, “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 grandmother once and immediately asked what had happened. Most importantly find one very close to you, no more than 10-15 minutes drive.”
Kancherla visits her mother daily and feeds her. The family says the nursing home staff are extremely compassionate, loving and understand her grandmother’s needs in spite of the language barrier.
Recently, however, Sasirekha urged her family 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.”
Finally, a few weeks ago, Kancherla took her mother home for a visit just to see how it played out. “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 Kapoor shares that daily guilt of not being with his mother, who now lives with his sister in India. “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 his sister Anuradha, who is exhausted and stretched to the limit taking care of her, juggling a full-time job that involves travel and trying to reconnect with her husband who has returned home after four years. “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.
“Nevertheless, the thought of putting her mother in a nursing home is something Anuradha 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 she can go on like this for the next 20 years.”
Desh and his other sister Neelam are traveling to India to give Anuradha a break, but it’s a temporary reprieve. “I can never repay her and my brother-in-law. 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.
For Ranjan and Anjan Dutta-Gupta, their mother’s failing health two years ago and her hrefusal to come and live with them in the United States has been a source of major aggravation. “It is ironic that our parents took care of an extended family and made so many sacrifices, but both her 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.
They say that if it had not been for their brother-in-law Subroto Sengupta, they don’t know how they would have managed either.
“Subroto, an incredibly bright man, has turned down promotion after promotion for years, so that my sister Indrani can stay close to my mother in Calcutta. 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, but still insists on taking care of her mother.
Anjan says on the 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, he recognizes that Indrani has been their mother’s lifeline. “She saw some symptoms that the nurses missed and insisted on taking her to the hospital, where she collapsed and had no heartbeat for several minutes, before she was revived.”
The thought of putting their mother in a nursing home is something the family balks at. “If I did that people will spit on me,” says Anjan. “There is still a stigma attached. It will break ma’s 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 contemplated moving to India, leaving his 19-year-old only son Ravi and his wife Indra in the United States for the next few years to be near his mother, but his mother nixed the idea. “She said your place is beside your wife and son, you must not come here. 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.
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 days it’s just me and she misses chatting with her friends.”
Anuradha worries that India’s huge aging population is at risk as the younger generation goes out to conquer the world. In the United States, Anjan’s wife Indrani shares the same fear. “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 anywhere 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,” says Desh.
“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. 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 also seen the children sobbing when they come to drop their parents or loved ones off. They feel as if they are deserting them.”
So Thakar considered creating a South Asian environment for these patients. “We converted the fifth floor of the center to an Indian floor. The décor is Indian, we have four Indian cooks cooking different cuisines of India, a temple with prayer sessions, a common room where people can mingle and chat. We 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 of 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 say, ‘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.'”
Many have healed and gone, some have passed away at the facility. At present it houses 54 South Asians, but word is spreading and Thakar is fielding calls from Indians all over the country asking about the facility, the tab for which is typically picked up by Medicaid and Medicare.
Thakar calls the Alameda Center 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.”