ABOUT SAHARA AALHAD
The Sahara Care Home is true to its name. It is a home, first and foremost, and a treatment facility second. In the same way, the patients are family first and ward mates second. This vibe was never carefully planned or constructed. It is just the way it is; the ethos of one big loving family where some family members (patients) leave, some family members (patients) return and some family (patients) come to stay for a while.
WIT & WELLNESS
Working closely with the HIV/AIDS epidemic has been Sahara’s position for the past year. In a world that is fraught with tears and loss it sure gets tough but you won’t find any navel gazers here, not in Sahara! The organization has always believed and will always believe that “laughter is the best medicine.” Humor and hilarity take away the edge of a condition that has no cure. Sahara faces its challenges in its own inimitable way-with funniness; tempered with the desire to serve God, to serve man, to give and to receive. It’s nice to try but it’s even nicer to try...with wit!
THE NOBLE HERO
To many a caregiver working with HIV/AIDS and Tuberculosis, Robert Koch is a true hero. This thin, bespectacled German physician changed the world on March 24, 1882 when he revealed that Tuberculosis was caused by bacilli and was not genetically inherited.
In fact, even fewer know that Robert Koch was the person responsible for isolating the germ causing Anthrax, also called ‘black death’, which decimated cattle by the thousands in the 1800’s and early 1900’s.
Robert Koch received the Nobel Prize in 1905 for his work with Tuberculosis. Following Robert Koch’s momentous discovery, tests and treatments were invented which are in practice even today, though more than a century has since passed. So to the man who performed a modern miracle, we salute you!
SAHARA AALHAD’S SERVICE PLANS:
Phone follow ups
Crisis intervention for women
Crèche and after school child education support
Monitoring and in-patient care for those undergoing early stage ART treatment- assessing tolerance, side effects and adjustment
GIPA initiatives such as support groups – men, women and children (also mixed genders)
Using modern tools of communications for public relation exercises
Data base development to track etiology and epidemiology
Non-Clinical studies
Personality development/management skills
Income generation activities such as making accessories, bags, cards, phenyl, and detergent
NUTRITION AND RATION SUPPORT:
The Nutrition and Food Support is provided specially to those patients who are on Anti-Retro Viral Treatment (ART) and/or Anti Tuberculosis Treatment (ATT) who need nutritious food and supplements (milk, fruit, soup) to cope with the strong side effects like weight loss and depressed appetite that the treatment line causes. This particular service is also given to patients in crisis situations precipitated by severe illness and/or a period of joblessness or emotional distress in order to assist them to respond quicker and recover faster.
Sahara Aalhad has been a witness to the strong connection between nutritious food, tuberculosis treatment and ART. The pill load and the side effects of both treatment lines have weakening effects. A ripple effect takes place: poor diet and meal intake results in patients often responding poorly, or worse, going off their pills completely. This causes a further aggravation of their conditions and a vulnerability to severe opportunistic infections that precipitate AIDS. This factor complicates case management further.
The profiles of this target group are equally intriguing – most of those in need live below the poverty line. Sahara Aalhad’s meal and nutrition provision comprises of simple fare that forms the staple foods of the target community and those receiving the support display great improvement. Under the scheme we see weight gain, increased energy levels and strength thus improving earning capacity. As of now, Sahara Aalhad has 4 families under the N&RS program serving 14 persons in total. And 2 more families will be integrated soon.
STAFF UPDATES:
Alice Francis has rejoined duty after maternity leave. Richard Francis who works in the administration dept. is the proud father. The little boy is named Aaron.
Abbas Parvaneh, ex-Program Manager has relocated to Delhi to work in a Harm Reduction for Injecting Drug Users program.
Two staff members of Sahara currently undergoing treatment in the care home are on the mend. We wish them an even speedier recovery so that they can rejoin their duties and get on with their lives.
STAFF APPOINTEES:
Promotions:
Program Manager: Jayanta SinghProgram Coordinator: Santosh Solanki
Care in-charge: Aarti Sharma
Care workers: Niang Kashyap & Harish Soni
Volunteers: Praful Bendre, Jyoti Warpe & Nico
OUT-OF-THE-BOX INITIATIVES:
Sahara Aalhad has devised some unique ways to occupy the hours, to learn and have fun at the same time. Some of the initiatives and their aims are:
Coffee Nights-Music, dancing and singing with snacks and coffee. The idea for this is being able to let your hair down, observe and get involved in social dynamics.
Zen Garden- The non-cemented land area will be turned into a small garden where each patient will be given a plant to tend to. This is to encourage environmental friendliness and awareness.
Reliving the Dream-Patients with long lost ambitions will be helped to achieve them again; like playing the guitar, learning computers, learning Basic English. The goal is to infuse optimism and add quality to life.
Drama Day-Patients will be split up into groups and are asked to develop a skit around a theme which they will act out. The goal of this initiative is to provide a channel for creativity.
‘Wardstar’-The best behaved patient of the fortnight will be given a special badge and a hamper made up of edible goodies. The thought behind this initiative is to inject a sense of healthy competition, self-motivation and worth.
WHAT STAFF SAY:
“I am brimming with ideas, small things but ideas that will go a long way in creating the kind of place that I would be glad to work in. Added to that would be the joy of seeing the patients benefit from what I can contribute."
“It’s great to see that there are hardly any identifying signs to separate the patients from the staff. Everyone seems to be like one big gang out on a vacation. This is the kind of thing that never seems to amaze me”
“For a long time I was made to feel that I was a good-for-nothing guy. At the Care Home I found out that I am of some worth.”
“There’s no escape for me in Sahara! I’ve got to practice what I preach. Any con jobs and I’ll stick out like a sore thumb.”
THE STORY OF KHAJA PASHA:
Khaja Pasha is 7 years old. He’s a normal little fellow and as any little fellow his age he loves to go to school, watches cartoons on cable TV and play pranks. Pasha was infected with HIV at birth and AIDS took away his father and mother. His extended family was afraid of his condition and kept him separate.
Since his referral to Sahara, Pasha has received the love of a 100 empathetic care takers. Pasha’s impish grin, his pride in his independence and his forging of a personal identity has endeared him to everyone. Two years have flown and it’s time for Pasha to leave Sahara and enter into a home for HIV positive kids who are provided residential services, education included. On a recent visit, Pasha loved the place staring, excitedly, at the children running around.
Showing a rare maturity, Pasha is eager to explore his new adventure. He has already told his class teacher and school mates and they have planned a farewell for him. Sahara, too, will have a send-off party and screen his favorite “Teenage Mutant Ninja Turtles.” Everyone knows that on the day, as soon as Khaja Pasha is out of sight, there’ll not be a single dry eye in the house…
THE SWEDEN-INDIA PROJECT:
The Sweden-India Project is a cross cultural training program in social work. Undergraduates students of social work conduct this visit while doing their 6th semester and receive vital experience along with 15 credit points. The program is facilitated by the Academic Advisor, a Pune based organization involved in education and environment. Nine students from Batch ‘B’ visited the Sahara Care Home to study the goings on and to interact with the patients and staff. They were there from 10 am to 3 pm and had lunch in Sahara. The students took copious notes and asked question pertinent to their field of study like religion, finances, mental illness, medicines, cultural, staff issues, stigma and discrimination, women’s rights, injecting drug use and many more but everything. That they inquired about has its basis in social work and endeavor. The next batch, Batch ‘A’ is due any day now.
WHATTHE STUDENTS FROM SWEDEN SAID:
“Thank you so much for having us, it’s been a really inspiring day and you have educated us in a lot of different ways! I’ll remember this visit forever! Thank you.”
“I am so grateful for being welcomed by you today. You and your clients have been very open and nice with us. Thank you.”
“Thank you for showing us your wonderful and important organization. It’s been a beautiful day, thank you.”
THE STORY OF NAVEEN:
Naveen is in his early 40’s. He’s short, balding and extremely excitable. He works in Sahara as a counselor and one would be hard put to find someone as motivated and committed as him. The patients, their spouses and families love, respect and regard him highly. Naveen has been HIV positive a long, long time and the all the years living with the virus have tempered him into a walking, talking, performing dictionary of everything related to the condition. Naveen has been through the mill so he has a deep intuition that helps him see situations and their possible solutions well in advance.
It would not be untoward to say that Naveen is living the most productive phase of his life in Sahara. He is now married and has a daughter but he always says that Sahara is his first family.The other thing about Naveen is his willingness to approach every task with dignity of labor. He does everything including mopping, bathing, feeding and driving the ambulance. And yet, at the same time, he has been the enigmatic leader of Positive Persons Support Groups that have advocated for acceptance and change.
It came as no great surprise that UNAIDS picked him to be the face of one of their campaigns. It always gives us a terrific kick whenever we see him gazing down from the posters looking very much like a plump version of Nicholas Cage.
FAMILIES:
The families that come to visit their near and dear ones at the care home are a revelation. They bring their children and distant relatives along and spend quality time chatting not only with the ones that they have come to meet but also with the staff and the other patients. Fear, shame, indirect stigma and ‘felt’ discrimination are conspicuous by their absence. The families, individually and collectively, receive constructive and awareness counseling. The ambience would make one wonder if this was a church garden party or a treatment place. It is music to the ears that when it’s time for them to go home we hear the oft repeated, “Kha, pi ani aushad ghe!” (“Eat, drink and take your medicines!”) It’s a heartfelt reminder that’s become a slogan of sorts for us.
CHALLENGESFACING SAHARA AALHAD:
One of the new challenges that Sahara Aalhad is facing is when patients develop tubercular meningitis (TBM). Dealing with TBM is a difficult job.Symptoms range from loss of bowel control, going off of food and refusal to accept medicines. Irrational behavior and signs of mental imbalance are also usual. These patients are mistakenly thought to be mad but they are not. They are simply very ill. Doctors need to conduct comprehensive tests on an urgent basis and medicate aggressively. The follow up has also to be conducted consistently with an across-the-board communication with the nursing staff, laboratory technicians and care givers. Care providers need to watch the patient around the clock and the hands on management requires skill, patience and a single minded dedication. In short, care provision in such situations requires keenness that goes well beyond the call of duty.
Anti-tuberculosis treatment alongside anti-retro viral therapy often shows good outcomes. Steroid therapy is another possibility that can be considered. A care worker needs to adopt an approach that goes far beyond the call of duty. Another aspect is ‘nursing fatigue’ that families suffer when attending to such patients at home. The families are shown what, when and how to go about looking after their afflicted loved ones.
Another challenge Sahara faces is the refusal of patients to get registered and start ART even though they are eligible. They are terrified of the side effects like diminished appetite, weight loss, nausea, diarrhea, and rashes. Many of them have experienced unpleasant side effects on anti TB drugs and other medicines. It’s tiring when dealing with those who need ART but simply refuse to register and access the treatment. It is a painful process too as the outreach worker can see the consequences of this refusal by sheer dint of experience. Often due to excess contact the client gets irritated and the worker loses hope and feels like giving up. Counseling to reduce the fear factor is a time consuming exercise and it is often too late by then. At this point, it pays to take a step back but that’s tough too because if anything bad happens in the interim, the outreach worker feels more than a twinge of guilt.
SAHARA AALHAD REQUIRES:
Inverter for lab
Sowing machine
Washing Machine (Large capacity)
Solar panels
Microwave (Large capacity)
Projector/White Screen
Mixer Grinder (Large capacity)
Cooking vessels
Clothes – Adults and children
Field First Aid kit
Indoor exercise cycle
Toys
Guitar
High powered water pump
Art and Craft material
Immersion rods
OPERATIONAL HURDLES:
The electricity at Wagholi, the location of the Care Home, goes off at the most unexpected of times and for the most unpredictable of periods. This creates sighting problems especially at night when nursing and care duties are being conducted. With the computers also grinding to a halt, documentation gets stalled leading to a backlog. The fuel for the generator is very expensive and difficult to procure and can provide electricity for only a short period of time.
The Care Home site is also just beyond the municipal water supply limits. This means that water has to be bought and supplied by tanker. The water is not fit for direct consumption and can only be used for washing, bathing, and cooking. The daily requirement in the Care Home is 1 tanker per day which is 900 liters. Drinking water also has to be purchased. The water bought is purified and supplied in 20 liter cans. With around 35 people in the Care Home at almost any given time the drinking water consumption is high, up to 80 liters per day, and it is something that cannot be restricted.
Water and electricity have for long been spokes in Sahara’s wheel and efforts towards alleviating the twin problems have been in the works for ages. Still, this time around there seems to be a ray of hope. The local elections have just concluded and the power of governance has changed hands. Politicians, at this time, are keen to cement their reputations and the moment to strike has arrived. Sahara will be petitioning the local leaders to take up our case with the appropriate authorities. The area’s developers will be roped in to help as they will be laying pipes and electricity for their apartment blocks and can assist us with the necessary paperwork and point us in the right direction.
VOLUNTEERS NEEDED: