Here are some case studies which is taken out of real situations. It shows that a large number the elders in our country are marginalized and mistreated. The system is getting to much inadequate to support the ever increasing ageing population. Long term care is in tatters. As a society we need to act fast to put new systems in place to have efficient long term care. The first case study is a letter itself thanking us for the care given Late Mr. Jeremy uncle by his daughter who lives in Canberra.
Shivasubramoniam 76, was a former Indian Cricketer who played many test matches in yester years, is today a bundle of bones torn apart by a dreaded disease and helplessness. Money was never a problem, since the companies he set up are all running well. All the children, three boys and a daughter are all settled in Chicago.
“What is the use of money and children. I’m blessed with both but is of no use. I live the life of a destitute”. Suri laments. “You end up losing everything you have worked for, plus your self-respect,” the words portraying the many facets of old age in this country.
Oh God, wish it was unseen!!!
I was accompanied by our nurse manager to visit Mr. Patwardhan following a telephone call from his daughter Ms. Rekha. Her need was to dress up her father’s pressure sores.
Mrs. Rekha welcomed us with a couple of incense sticks lighted in her hands to fight horrid smell in her father’s room, which seems to be locked from days together. The way his daughter treated him would be akin to the worst sort of torture.
Mr. Patwardhan’s story will remained us of the perils of old age, more typical of an old man who blindly believed his children and a classical example of neglect and abuse in old age.
Mr. Patwardhan was in his late 60s retired few years back, as a first division clerk in railway. Loneliness haunted him, as his wife succumbed to cancer. Spouse lose is a major issue in old age. Nothing can compensate this loss.
Though Patwardhan was blessed with two sons and a daughter his old age was shrouded in pain. His bad patch in life started when he had his first stroke. He was bed confined with right side body totally paralyzed. A person being active till a day before, it was too much for him to depend up on his daughter. Both son’s abroad and not interested in his welfare he is left with no other option but to stay put up with daughter’s attitude.
Being the only daughter and supposed to take over the primary care givers role Mrs. Rekha settled for insufficient care to his ailing father. Neither had she found time to feed him on time. The excuse she made was very usual “I don’t have time since I am working and I have two children to be taken care.
Two years ago, former dancer Sheila Ramanujam faced the toughest situation of her life. After a heart-to-heart talk with her doctor, she came to the reality that at the age of 76 she’ll have to care for her 48 year old son Shiva who came from US diagnosed with MND and ailing.
In the early 80’s, Shivaramakrishnan, a former IIT Kharagpur student went to US to pursue higher studies and then decided to settle in Silicon valley. Everything in life till 42, seems to have worked out as he planned including his marriage to his classmate of North Carolina University and bringing up the 3 girl children.
But at the age of 42, his life took a further tragic twist. His wife developed an affinity towards a young collegue and decided to live together and the custody of the children becomes a vexed issue. Finally he had to part with the children as the custody case was decided against him and his wife got the custody.
Riddled with pneumonia, frail and a shadow of his former self, Shiva was wasting away. Sheila, now 76, has had to make enormous sacrifices to ensure Shiva remains cared for at her three bed room house. Numerous adaptations have been made, including installing a special chair, hospital cot, rails and oxygen concentrator. Also made arrangements of home nurses round the clock.
Sheila is now looking for alternative ways in which she can improve her quality of life and still look after Shiva. “If we’d have left him in the Geriatric Care Facility, he wouldn’t be here at all now – and that’s not because they were unkind, they just didn’t realize how delicate he was. But at the moment, he’s wonderful.
I prayed to God that I wouldn’t regret my decision to keep him. And I have to say, I love him more today than I did 17 years ago. I’ve never ever regretted my decision. I adore him.
Yashodamma, 72 is today at the mercy of her daughter-in law. She neither shows mercy nor compassion but tries to kill, because yashodamma is a burden. Yashodamma mothered four children, two boys and two girls and she is proud that all her children are well settled.
After the death of her husband, health also failed Yashodamma. Children tossed her from one place to another as nobody wants the burden of care giving. Finally, the eldest son who works for a multinational company was forced to take her. The bad patch started from then onwards. Daughter in law, Nooreen was never liked by Yashodamma, since it was an inter caste marriage. It was a strained relationship between the daughter in law and mother in law always. Nooreen misbehaved from simple spite. Son, who was classified as “spineless”, is finding fault with the mother, always supports his wife.
Taking the advantage of the trapped situation of Yashodamma, Nooreen started physically torturing the mother in law. Son was balked of the chance in preventing the torture because the other siblings never co operate.
Today, partial stroke took a toll, she is mostly bedfast with urinary incontinence. Food and care are restricted, dictated by daughter-in-law. Recently, in a fit of anger, Nooreen hit her mother in law and she fell down, reasoning that she’s making the room a urinal. Adding to the cruelty, she even put cloth pegs on the eyelids to make the mother-in-law sleep.
Its very nature means that it is largely hidden and rarely acknowledged, and its extent is difficult to gauge. As with child abuse and domestic violence, abuse of older people is seriously under reported. Community nor the relatives are allowed to interfere in their family matters as these things happen inside the four walls. Many a time, the community is helpless in these situations.
Dear Mr. Roshan, I am writing this during a period of grieving, because I do not want anyone else to be caught so off guard as were I and my Mom, by a system that is grossly inadequate to support the families in distress. The family needs training in how to care for a family member who is elderly and ill and progressively facing a disease cycle like Alzheimer's and Parkinson's, with the other age related heart disease and vulnerability to illness that inevitably follows. The various so called NGO’s we encountered earlier were largely useless donation absorbing organisms with little to offer us. You stand out because of your passion.
I and my Mom did everything in our power to keep my father alive and comfortable during the worst of it, over the course of a 6 year period that found us without the sympathy of the system, without the sympathy of society and without even the sympathy of employers, the law, even of the medical doctors who were charged with providing services for which we paid untold hundreds of thousands of rupees. We persevered only because it was for Dad, recognizing that he faced the choice of either a terrible death outside of his control or prolonged illness with comfort and love, with our help, that was the only choice before him. We chose the latter, because the former was unpalatable to either of us. We had no illusions that we would get good help from the System. We got little for years, but later on, exactly in september 2007, found your organization to help us. My Dad was home cared for from 2002. It was a 24x7 strenuous battle against bias, malice, illness, financial hardship, abusive facility personnel, poor quality professional help, horrifying facilities and yet I know like you, I'd do it all again, because you only get one father, one mother, and one chance to help when they are very ill. In India, not everyone is up to it. But if you are not, don't blame others.
We had a very bad experience with professional help while caring for my Dad. During the final year of his life he was in and out of hospitals. It was unfortunate. He has since passed away, but had we had good instruction from medical professionals early on, we'd have been able to save him at least some discomfort and illness. We struggled for 6 years between 2002 and 2008 with bad advice from Doctors, negligent abandonment by Doctors, Professional Arrogance, poor instruction, improper treatments.
The exhaustion and helplessness forces us to take a different route. Few of our well wishers who were watching this tamasha advised us to admit him to a facility. Some one suggested ASHA KUTEERA ( name Changed to mask the identity). We visited the place and the Lady who runs it, (if given a chance), oscar winning actress convinced us that everything will be honky dory. What we got is different. Overdosing by facility, bad food in facility and some Nurses and/or Aides who simply had terribly bad ideas or were abusive or unresponsive or in many cases unable to read or speak English. There was significant professional incompetence, largely from management and from caregivers whom I don’t blame because management itself is bad. We got lucky finding advantAGE. Before we located your assisted living facility, we struggled with the system, even getting home doctors to schedule a visit.
Mainly, we discovered that when Dad was in the earlier facility, the facility was very understaffed or had poorly instructed Aides. Then, in any transition between hospitals or facilities, the Doctors simply did not oversee proper medication transitions. We had to interject ourselves to overcome negligence. Medical insurance did not compensate for very vulnerable patients. And they did not support 'maintenance' of very sick patients. The system of medical insurance is not for the very ill or dying, it can not cure I personally opened up a whole new door in the human definition for 'tired' during my care giving. I'd do it again for my father. So would my mother, in her mid 70's. And everyone I've met caring for a family member in person, has said the same thing. You aren't alone. While its not pretty, its worth the extra time to be with your elder, and they will be grateful for your effort, even if they can not fully communicate with you... Remember: YOU ARE OFTEN STANDING UP FOR A PERSON'S RIGHTS, AN ELDER WHO CAN'T FULLY SPEAK ON THEIR OWN BEHALF (depending upon their disposition, of course.)
Now the end has come. We have no regrets. We have the full satisfaction the end was peaceful and well monitored. No words to thank you and your team.... May god bless you and your team. Ruby Henderson
Brig. A.V. Iyer
I could't believe my eyes when I saw Brig. A.S. Iyer. He gave me a blank look when his son introduced me. We in the club call him Brigadier uncle and he used to play tennis and cards. He never misses his cards session in the evenings and used to stay back till the last bell. Son Jaidev works in an International School and daughter in law Gayathri is a home maker. They live in defence colony, Indiranagar, the most coveted area of Bangalore. Off late, 78 year old Iyer was diagnosed with Alzheimer’s and he was difficult to manage due to violence and incontinence. This is when Jaidev and Gayathri decided to have a full time help.
When they came first for counseling at our office we from our experience advised for institutionalization in a facility which has 24 hour care. Also we suggested to have a look at our assisted living facility. Even though they were not ready for institutionalization they took a tour of our facility and decided not to admit instead they wanted to keep him at home. We knew it was only a matter of time that they will change their opinion. Within a month they shifted Brig. Iyer to an assisted living home which is worse than pigsty.
Reasons given by the daughter in law for not admitting her into a good place like ours was beyond our comprehension. “We liked your assisted living facility but we feel your charges are a bit high”. Gayathri who wields authority decides. Where is the pension? We feel sad about Iyer uncle who had a king size life with all the pomp and show ended up in a pigsty. This is a typical example of son and daughter in law taking decision on behalf of the father and showing utter disregard of his position he held and basic human values. This real life story will make us ask few relevant questions. Why Iyer never anticipated such a situation? Why Iyer delegated his old age care to his daughter in law who is not a well wisher?
Widowed at 62, Shymala Devi, a former Bank Manager was left with no other option but to relocate with her sister since she is a spinster. It was a difficult decision, for a fiercely independent person but failing health forced her to seek her sister’s company and help.
Six months later she was diagnosed with breast cancer and two years after that, renal failure. When her medical bills hit Rs.600000/-, she sold her house in Trichur, Kerala to start paying her debts. Today, at 65, she takes expensive cancer drugs and dreads uncertain years of paying medical bills for dialysis on her own.
Malini was in no mood to put her sister in a long term care facility, but the constraints like space in a two bedroom flat and the difficulties of palliative care forced her to search an alternative. Sister and her family, burdened with the care of this terminally ill patient, wants to find a palliative care center where she can be accommodated. Frantic searches bear no results as no old age home in the city has the facility to take care of such patients.
Those who have seen Mr. D’souza in his prime time will definitely pity his present existence a harrowing experience. 82 years, Mr. D’ Souza is bedfast after a stroke and lives in the second floor of his daughters palatial house in this city. His story will remind us of the perils of the old age, more typical of an old man who blindly believes his children and a classical example of neglect in old age and teach us the risks involved in an unplanned old age.
D’souza was a coffee planter by profession. He had an envious life till he was 70. He had all the luxuries in his life, extravagances which are synonymic to a few privileged people, but unwanted lavish to common man. In short, he was born with a silver spoon in his mouth and in days of yore he lived like a king. He was a handsome, statuesque creature with pale blue eyes, genes attribute to his forefathers who came to settle in kodagu from Great Britain and people used to call him Saippu meaning “the foreigner”
The twist in his biography happened 12 years back when his wife Amelda succumbed to breast cancer. Loneliness engulfed his life and his life slowly drifted to heavy drinking and smoking. Both children, a son who is in the U.S and a daughter in Bangalore were not interested to uproot him from his moorings. They cited their compulsions, highlighted their constraints and reasoned preoccupations as a ruse for abandoning their father. Son, who is supposed to take the primary care giver role has scrupulously steered clear of his primary duty citing he is long away in the US. Having been now virtually shunned by children I found him lying on his bed yelling and cussing.
The days after his wife’s death flowed impertiably into one another and D’souza gambled with his life. He went on doing ludicrous and irresponsible things. Warts and all, he played the proverbial “lost son”. His waywardness cot him his wealth, most of which was cheated by children and relatives. Over a period of 12 years he lost everything except a few cents of land and a dilapidated house. From a millionaire planter, his life whittled down to a pauper. The situation became hopelessly tangled when his health also took a beating.
I was struck by the glaring incongruity of D’Souza a story, since conservatively speaking, aged parents were looked after in his society. Daughter, whom the primary care role was thrust in to was a socialite hopping from one club to another and a high profile social worker too. Her wealth, lifestyle and personal ostentations were a source of social criticism. Having a busy schedule of social life, Dulcie hired a professional Geriatric Management Company to look after her father. After evaluating the patient, Geriatric Care Manager suggested Physiotherapy, but she discounted it saying that it is too costly. Confined to a bed for the past four years, the poor man is a bundle of bones, waiting to receive the coup de grace.
As D’souza presents a typical story of neglect to our umpteen elders in this country, one cannot help but feel a nagging, disquieting sense of déjà vu. This is a biography which aims to dispel the myth that children don’t betray. The way the children treated him was akin to the worst of torture. The old man is also at fault of not planning his old age.
Having seven children is no guarantee that your old age is comfortable. Syed Tekriz, was once a successful business man, but today he is virtually tossed by all his children. The only mistake he did is he believed his children and parted with his savings. Unlike others in the community Mr. Tekriz, believed that education is a must. So he insisted that all the girls should get convent education. It was a struggle to bring up the girls and later settling them in life.
Now it is the turn of the girls to pay back. Mr.Tekriz is today bedfast at the age of 76 due to Alzheimer’s. Long ago he lost his wife and he is today at the mercy of his daughters. Looking after Mr. Tekriz is a difficult task day by day as feeding is a problem, eliminations are involuntary, and faculties almost failed. Sadly, none of the children wants to get involved directly as they all know the enormity of the problem. Every one quoted one or other valued reasons to shrug off the responsibility.
One of the sisters told that she’s just undergone a hysterectomy, other sister sited that she has two small kids, eldest among them is preparing for her daughter’s wedding, another one says her house is too small to accommodate a sick patient and so on. Unconditional compassion is a must in caring for an Alzheimer’s patient.
Finally they decided to dump him in an old age home. The youngest daughter, an architect by profession, who was given the task of finding an old age home, virtually knocked every old age home. Most of them don’t admit bed ridden patients. Certain others, no Alzheimer’s patient. Truth is that we are a secular country by constitution, yet we discriminate. Another cruelty is that his religion is a bar. Luckily before the search is over, Allah called him.