Rehabilitation by People - the AASHA Experience
By Ratna Chibber
President – AASHA
Background: I met Padma Bhushan Dr. Sarada Menon at SCARF for the first time way back in 1989 when I felt the world was collapsing around me because of my brother who was mentally ill. Dr. Menon is a boon to families with a mentally ill person at home. What makes her different is that she is first a compassionate human being and then an excellent psychiatrist. She provided families like us with the impetus to form an organization promoted and run by families for the betterment of our near and dear ones who had become victims of mental illness. It was she who repeatedly told us that families and families alone could take on the onerous task of rehabilitating our family members who were mentally ill.
Focus on Family/Care Givers: On hindsight, I can only say that Dr. Menon’s foresight was infallible. It has now been established beyond doubt that whilst early diagnosis and medication are important in the recovery process, there are other equally important aspects without which recovery can at best be a distant dream. These not-so-obvious aspects are:
Care and compassion
Administering regular and timely doses of prescribed medicines
Supervision and implementation of suitable hygiene standards and,
A full-day time table for the patient.
The illness and medicines on the one hand tend to make the patient lethargic. The rehabilitation process, on the other hand, requires him/her to have some form of physical activity for a few hours during the day. This is easier said than done because many of them escape into their own secret world of make-believe. It is only the family or the care giver who can attempt to coax them out of their secret world and gently bring them in touch with reality. In my experience, I have also found in Pune, Kerala and even at AASHA that non-family persons, not being burdened with emotional factors with the patient, have done wonders with persons under rehabilitation. This I have seen to be particularly applicable in areas where the patients are being “trained” in specialist skills. Families have a handful when they try to cope up with their mentally ill relative and fight social stigma. Seeing their struggle, many non-carers who want to be of service to society have found themselves drawn into the fray. Many if not most of them have provided patients and families with invaluable “shramdaan” (personal service) and novel ideas to speed up the journey of patients towards near-normalcy.
Training: Thanks to the efforts of Dr. Radha Shankar, AASHA received a sum of Rs.2.00 lakhs from Abilis Foundation, Finland. Using this money, AASHA ventured into unknown territory by opening up a retail sales counter for stationery. The unique feature of the shop was that all its employees are patients under rehabilitation either from AASHA Rehabilitation Home or SCARF. Every employee of the shop is paid a stipend, which in the early days came from well-wishers and donors.
A care giver who happened to be a retired government employee was placed in the shop as a Supervisor. Within a short span of time we learnt that residents who worked in the shop wanted to spend more time in the shop than in the Home. Also, persons employed in the shop showed remarkable signs of progress towards recovery.
One of the foremost features that yielded paid AASHA rich benefits in speeding up recovery was a “zero pressure environment”. AASHA started a retail sales shop selling stationery items, chocolates and biscuits 4 years ago. The plan was to employ residents of AASHA Home (who were in the process of recovery and rehabilitation) and pay them a stipend not so much to pay for their needs as much as to help them regain their shattered self-esteem. Also by facing real-life situations in the shop, our plan was to gradually reintegrate them with mainstream society.
A few family members got together and decided who would perform what task, who would train and supervise the employees and what kind of training we would give them. None of us has ever run a shop and none possessed the attitude to run one successfully. But profit was never our goal. So, armed courage and missionary zeal, we went about our agreed tasks. We handpicked the first batch of employees from among the residents. As expected, they turned out to be quick learners and in time were able to manage the shop on their own. At AASHA we have broken down the principles we adhered to in simple Do’s and Don’ts:
Treat them like adults, NOT school children.
Treat them as equals. DO NOT look down at them.
Tell the CLEARLY as to what decisions they can take and what they must refer to the supervisor.
DO NOT force them to do what they don’t wish to.
Treat them professionally – be firm when firmness is required, reward them when they do well.
If they were accountants before being stricken by the illness, they may want to do accounting work only. ENCOURAGE this trend.
Train them in pre-determined modules – little each day.
DO NOT look over their shoulders when they are working.
Give them a feeling you trust them and rely on them.
It may not be possible for a family care giver to do all this objectively. Therefore, I believe a non-family person would be better suited for this function of Training.
Level & Limits of Care: One of the most encountered hurdles in caring for a family member is “the other family members”. Parents rarely abandon their own mentally ill offspring. But if they themselves are in need of help due to poor health or for economic reasons, they are left with no choice but to entrust their wards in the hands of Halfway or Life Care Homes for mentally ill persons. People who send their wards to such halfway homes should make it a point to visit their wards at least once a month and take their wards home once a month. If that is not done, the staff and care givers at the home often find it difficult to manage and contain wards who have pent up desire to see their parents or near relations. Lucky are the patients whose Families rehabilitate them in their own homes. It is however important that Families understand and accept that medication by
itself is not enough to facilitate the process of recovery. Occupational Therapy or some kind of physical activity to keep them engaged is a must. Families rehabilitating patients in their own homes find themselves battling with their own emotions when some of them refuse to adhere to set time tables of work, eat, and sleep routines. A more common limitation felt by Families rehabilitating patients in their own homes is that they may not have the equipment and supplies for Occupational Therapy.
Support from mental health professionals:
Like in most illnesses, the earlier the patient is diagnosed for mental illness, the better. It is not Mental Health professionals that are a hurdle to early diagnosis and medication – more often than not it is the patient’s Family that presents a hurdle. They want to first exhaust all possibilities, including the supernatural. Exorcism rites are not uncommon even in highly literate and cultured Families. A lot of time is wasted on these worthless pursuits. This is where a self help group can contribute by way of awareness programs. Mental Health professionals are ever willing to be of assistance to Families but they are hopelessly outnumbered. It is believed that India has just 3500 Psychiatrists who have to cater to over 20 million diagnosed cases of mentally ill persons. The task is mind boggling if not impossible. The number of cases of mental illness is growing at an alarming rate and in recent times drugs and alcohol induced mental illness has made matters worse. Incidentally the key word is diagnosed cases. We can’t even start making a guess as to how many cases are out there walking the streets when they should be in high security psychiatric wards. Therefore the responsibilities on the shoulders of Mental Health professionals are onerous and can never be overemphasized.
Difficulties and possible solutions:
There is no denying that even a minor fracture in a member of one’s family evokes far more sympathy and concern in the rest of the family than if it were mental illness. On the contrary, the person with mental illness would be the subject of ridicule. He/she would be accused of laziness, poor hygiene or simply being “crazy” – all classic symptoms of mental illness. And if such thoughts originate from the breadwinner (be he a brother or brother-in-law or uncle) the care giver (who would most likely be the mother or sister) will be compelled to watch the atrocities showered upon the patient on a daily basis in silence.
Therefore the first major difficulty is for parents/families to come to terms and accept that their son/ward is suffering from mental illness. Social stigma and fear of its impact on marriage and job prospect of siblings is another problem that families have to face because of which they try to conceal the patient from society. But sweeping it under the carpet is never a solution because it will be at the expense of the patient who will only deteriorate. The solution lies more on self help groups and Psychiatrists’ Associations help shattering myths and bringing awareness.
In all such cases, the Halfway Home appears to be the only solution. However here too one has to be very selective. There are all kinds of Homes run by all kinds of people, including fly-by-night operators. Not all of them understand the illness. The only way to treat patients, according to attendants in certain Homes, is to put them in solitary or threaten them, if not flog them.
Mental Health professionals and care givers in Halfway Homes find it frustrating when parents do not visit their wards or take them home on special occasions like festivals, birthdays etc. None of the difficulties are insurmountable once families come to terms with the illness.
In running the Home and Shops has driven home a few important lessons in the rehabilitation and recovery of mentally ill persons. The most important ones are:
a) Active Family participation is a key factor.
b) Stigma lies in our (Family’s) minds. Families must first eliminate the stigma from their own minds and only after that try to eradicate it from society.
c) The most effective Occupational Therapy is sheltered/supported employment where they can interact with mainstream society on a daily basis.
d) Even chronically ill patients can be placed in non-critical jobs where they can have day-to-day interaction with ‘normal’ people.
a) Rehabilitation Home for women at Tambaram.
b) Retail Sales Counter for Women at Tambaram Rehabilitation Home.
c) Bus for transporting Home residents everyday from the Home to their place of work and back.
d) Increasing member list both carers and non-carers to serve the cause of or mental illness.
e) Day Care Centres at both Homes for residents as well as non-residents.
f) Enlisting support from friends and well-wishers to open up avenues for employment for in sheltered/supported environs.
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