paralysed and losing his mind

For over six years now, half of Dinanath’s* body was paralysed. At 72, he lived with his wife, son and daughter-in-law in Matunga Labour Camp. Everyone in the family was sympathetic to his condition.  Dinanath’s son was a driver and his daughter-in-law was a maid.  Dinanath would curse, yell and violently beat up his wife. If his son intervened, he got beat up too.

The family knew that  Dinanath was suffering from some mental instability. He was deeply suspicious of everyone in the house, especially his wife. While he was of a volatile temperament ever since marriage, his ailments aggravated his volatility. With age, his wife found it more difficult to deal with the abuse. To escape from the torment, she undertook physical labour as a daily wage earner that gave her a few hours of respite. However, upon her return from work, she had to face the music again. Her daughter-in-law tried to hide her when  Dinanath became violent but that didn’t always work.

When an outreach worker identified Dinanath’s case, his temper was close to uncontrollable. As part of the intervention, all the family members were interviewed. Paralysis caused  Dinanath’s speech to slur, but the family members readily interpreted his speech for the social worker. Doctors from the department of preventive and social medicine (PSM) department of the Lokmanya Tilak Municipal General (LTMG) Hospital (aka Sion Hospital) made early health assessment and decided that  Dinanath needed to consult a psychiatrist. Therefore, a psychiatrist was arranged to visit  Dinanath.

Turns out  Dinanath had schizophrenia. Much of his violence could be attributed to altered perceptions of reality, sometimes bordering on the unreal. The family was unaware of this condition of his.  Dinanath received immediate medical attention, his family was counselled. With extensive medication and remarkable patience from his family his mental health improved.

However, his physical deterioration outran his mental improvement as age worsened matters. His family could enjoy a few weeks of peace in the household before  Dinanath passed away. It was some comfort to the family to know that the person who left them had regained his sanity.

*Actual name withheld for privacy.

mobility liberates

At 68, Rati Mala’s* arthritis got so bad that she couldn’t walk; she was homebound. Her husband, though he could move about, had Elephant’s Foot caused by filariasis. The couple lived with their married son who was the only earning member in the family.

Rati’s daughter-in-law and husband helped with the daily chores around the house. However, having a bed-ridden Rati didn’t help. While hers wasn’t an emergency case, timely intervention could get her back on her feet. She was referred to Shield by the department of preventive and social medicine at the Urban Health Centre (UCH) at Dharavi. As part of the intervention, home based care was given to her considering her restricted mobility. Doctors from the PSM department made house calls and instructed her in basic health care.

Due to rigidity, initially actions were difficult. When she could move with some difficulty, she was referred to the department of physiotherapy of the Lokmanya Tilak Municipal General (LTMG) Hospital (aka Sion Hospital). More than anything else, it was her will to follow through with her physiotherapy that helped her. She was eager to get better and practised religiously. A paraprofessional dropped in on her from time to time to make sure she was doing her exercises right.

Both  Rati and her husband received medicines and nutritional supplements. At the behest of Shield, Sion Hospital began a physiotherapy class at the Dharavi UCH. The couple attend classes regularly.  Rati can walk now with a walker that was provided to her. Her husband too was given a walking stick. With proper nutrition, medication and exercise, the couple is now fairly independent.

*Actual name withheld for privacy.

alone and dying

K. Rambabu* (65) never married, and had lived alone for 35 years at Matunga Labour Camp. His untethered ‘freedom’ meant that he worked hard, leaving in the morning and returning from work only late at night. Rare for someone living in the area, he spoke good English and was always game for conversation about anything under the Sun. He was the local knowledge bank at Matunga Labour Camp and well liked in the community.

Things would have gone on as they had for three decades, but  Rambabu had inguinal hernia. The boys in the community knew he was alone and hence shifted him to the community centre for proper care.  Rambabu's health was deteriorating and he soon became home bound. The community centre provided his meals when he could no longer work; but the centre couldn’t give him medical assistance. A failing health meant there had to be causes other than hernia.

Initially Rambabu was reluctant to talk to community outreach workers, but when he yielded gradually a doctor from the department of preventive and social medicine (PSM) visited him at the community centre. The doctor confirmed that his hernia needed prompt surgery, and also diagnosed that  Rambabu was severely diabetic and had a high blood pressure. Immediately, the social worker in-charge of the case took the case to the surgical OPD of the Lokmanya Tilak Municipal General (LTMG) Hospital (aka Sion Hospital). A doctor from the department of surgery was to perform the relatively minor hernia surgery.

However, during the pre-operation check-up, it was noticed that  Rambabu had multiple hitherto undiagnosed health issues. A battery of tests were conducted before the operation and the decision was made to operate. The surgery was a success but the test results were grave. All this while  Rambabu had cancer, it was now in its terminal stage. His medical expenses were taken care of, but the doctors said that medicines at this point couldn’t contain his cancer. He needed palliative care.

Thus,  Rambabu was brought back to the community centre where his nutritional and medical needs were met. The boys from the community provided emotional anchorage since  Rambabu never had a family and had fallen out with everyone he knew. He spent his last few days in good spirits, glad to be taken care of. He died within a week of discharge from the hospital but it was a dignified death.

More importantly, he didn’t die alone.

*Actual name withheld for privacy.

tuberculosis takes its toll

Abhimala Kamath* (82) shared a 10 feet by 10 feet shack in Matunga Labour Camp with her son, daughter and granddaughter. The four lived on a combined monthly income of Rs. 2,000. The granddaughter earned Rs. 1,500 per month working as a domestic help, and was the only consistent source of income to the family. Her daughter earned daily wages whenever she could work. Her son was an alcoholic and a casual labourer at construction sites. Abhimala had tuberculosis.

Things were bad when her case was identified: their shack had one bed without proper mattress, bed linen or blanket. Chronic illness had emaciated  Abhimala. Old age and constant pain meant that she shifted restlessly in bed, talked to herself hours on end, forbid her daughter to go out and constantly complained helplessly. The family knew they couldn’t afford getting her treated. Having an alcoholic in the house didn’t help.

Intervening after her community brought this case to notice, home based care was decided as her best bet. Thanks to Lokmanya Tilak Municipal General (LTMG) Hospital (aka Sion Hospital), a resident doctor from the department of preventive and social medicine (PSM) visited her and guided her family in matters of basic health care, home remedies and hygiene. One volunteer came forward to take care of  Abhimala thereby relieving her daughter to go out and work. This volunteer soon developed a good rapport with the old lady.  Abhimala was given nutritional supplements of proteins and vitamins twice daily, along with extended nutrition support in terms of two good meals a day. Whenever  Abhimala grew cranky or refused food/medicines, the volunteer would talk her into it. Considering his love and concern for her health, she would yield.

That said, her health still deteriorated. Her family was instructed in proper respite care and medical assistance to ensure that she was as comfortable as possible. Soon it was decided that she needed palliative care. She was shifted to the Urban Health Centre of Sion Hospital where the resident doctor from PSM department who had provided her home based care attended to her. Her family was supported financially and emotionally to deal with her impending death. She lived eight days after admission. Her family was helped in moving her body to her residence.

Thus, an old ailing woman who lived in a slum got medical attention and support in the last days of her life. She didn’t die hungry and her pain was more manageable at the time of her death. Her family survived the medical and emotional costs thanks to the medical team from Sion Hospital and the volunteer who went out of his way to make life easier for someone he barely knew.

*Actual name withheld for privacy.

the story of radha shetty

Forty years ago Radha Shetty* (65) was married to an alcoholic wife-beater. Soon after, she left him and returned to stay at her maternal home. Her husband died a few years later. Things were going pretty well at home – the family was huge, with her parents, three brothers and their families living together.  Radha worked as a labourer at a mill nearby.

At the turn of the millennium, disaster struck. In quick succession over the next decade,  Radha lost both her parents and two of her three brothers. She also lost her job when the mill shut shop. The onus of managing the entire family came upon the sole surviving brother and his elder son; they jointly ran a retail store. To help her brother who now had three widows to take care of,  Radha gave him her life savings. He in turn, promised her a sum of Rs.1,000 every month for her medical and personal expenses.

It is hard to say if it was the pressure of supporting a large family or the authority of being the sole breadwinner that corrupted  Radha's brother, but he soon became verbally abusive and stopped giving  Radha money. They quarrelled often. Meanwhile,  Radha's osteoarthritis rendered her homebound.

Her case came to fore during one of Shield’s regular community outreach programmes. While addressing a group of elderly Tamil people,  Radha's brother informed us about her problems. Immediate intervention included arranging for medicines and protein powder. Doctors from the departments of physiotherapy, and preventive and social medicine (PSM) did home visits to help  Radha. With counselling and regular follow-ups, she started moving around and attending physiotherapy sessions at the Urban Health Centre (UHC).

While her physical health improved, relations at home soured. Even though her brother was a member of a local NGO and himself participated in physiotherapy sessions, his relationship with his sister was stressful.  Radha would recount his verbal abuses when she came to the Shield Centre.

When a social worker intervened it was found that everyone in the house was afraid of the brother, who was unresponsive to counselling by the social worker. The widowed wife of the younger brother showed some sympathy for  Radha and took up the responsibility of giving her medicines and assisting her in getting to the common toilets in the community.

In her sorrow,  Radha spent longer time at the Shield Centre where she was discovered to be good with crochet designs and woollen weaving. Since support was not coming from home, Shield provided her with the material to keep her engaged. Soon, students from the adolescents’ project asked her to take classes for them. Meanwhile,  Radha started showing problems with her blood pressure and her asthma flared up. However, medical intervention gave her relief.

One day, there was an instance of domestic violence at  Radha's house when her brother hit her. She stopped taking food and her health deteriorated. She had to be admitted to a hospital. As a part of crisis intervention, her brother was threatened by the legal implications of the case. His son was mature enough to understand the situation and through counselling, peace was restored at home.

After this instance,  Radha started spending most of her day at the Shield Centre making mobile covers, sweaters and table clothes. Shield marketed her goods at NGO fairs whenever they came by. Since then, she has had a cataract operation in one eye which was conducted free of cost at the Lokmanya Tilak Municipal General (LTMG) Hospital at the behest of Shield. But she soon lost sight in the other eye due to complications after a case of retinal detachment.

These episodes, coupled with regular counselling and family visits by Shield’s field workers have brought some stability to the household.  Radha has accepted her condition and complains less. She has found support in her nephew and her younger brother’s widowed wife. The Reddy family (Radha had kept her married surname) has since shifted to Dombivali but keep in touch with Shield. Her brother often volunteers for programmes and gives news about Radha.

Last heard from, she is doing fine.

*Actual name withheld for privacy.