Dr Mangala of SCARF (Schizophrenia Research Foundation) of Chennai shares wonderful case studies where friends and relatives have supported the person with schizophrenia empathetic and responsible caregiving. Plus 20 practical tips for caregivers.
The warmth and comfort we receive from a caring family member in times of distress, especially illness, often leaves us reflecting “What would I have done without him/her?" The presence of a loving relative by our side is far more reassuring than the best medical brains of the world being available in a vulnerable moment.
Family - An Integral Part
And no other branch of medicine is as dependent on a patient’s family, friends and relatives as psychiatry. Families are an integral part of the therapeutic force in domiciliary care in psychiatry. They are one of the major factors contributing to the better outcomes of schizophrenia in developing nations.
Care and support of families and friends for physical ailments is very different from care for psychiatric illness for many reasons. The difference begins with the duration of care and ramifies in all possible directions and pervades all aspects of life of the caregiver and the cared. When the affected individual is unaware of his illness, it becomes the utmost responsibility of the family to ensure medication compliance and regular follow up with the treating team. It draws on innovations, creativity, wit, presence of mind and most important of all, one’s compassion and resilience.
While most family members are actively involved in the early course of the illness, there are some who go beyond the call of duty in their commitment to the care of a mentally unwell person. They remain the pillars of strength in the rehabilitation process during the patient’s journey on the road to recovery..
We at SCARF have had the privilege of meeting many such wonderful caregivers who have made a difference in the lives of their loved ones and whom we salute in respect and gratitude. The MAITRI Awards given by SCARF every year is a token of recognition and appreciation of the efforts of caregivers of persons with serious mental illnesses.
I would like to share here the stories of a few memorable caregivers.
Ms. U finds a new family
When Ms. U, a bright, young lady in her late twenties lost her parents she was all alone in this world living with schizophrenia. She was careless about treatment and suffered setbacks in her mental health. Coming from a reasonably wealthy background she was reduced to a life on the streets. When she was picked up by the police from the streets in a disheveled state for questioning, all she could say was a name of a schoolmate, a long lost friend. That moment marked the beginning of a new life for her. When the police traced the friend who was now married and living with her husband and children, and informed her about Ms.U, she was surprised to hear about her friend from school.
From that day, Ms. U found a new family which readily welcomed her into their home and took care of her in all possible ways. The friend and her husband supported her medical treatment, ensured medication compliance and helped her in every stage of her recovery process. When she was better and free from active psychotic symptoms, the friend ( a teacher herself), helped her find a job as a teacher in their alma mater. Drawing strength from the friend who was now a colleague as well, U excelled in her work and settled in her teaching career. She had difficulty in working regularly when she had setbacks in her health.
When she improved further, the friend provided her with separate living quarters on the floor above her residence to make her more self reliant. She however continued to monitor her medicines regularly.
For over a decade, U’s friend and her husband have remained pillars of support during good and difficult times and continue to do so with a smile. In their hearts, she is family.
Mr. A supported the young son of his domestic helper
Mr. A is a retired gentleman living with his wife in a suburb of Chennai. His only son, employed in a different city now was treated for schizophrenia some years ago and is doing well. So when the young son of the domestic helper (who has lived in his house for over 10 years) showed some changes in behaviour which were not in keeping with his usual self, Mrs. and Mr. A did not waste time. They convinced the mother and arranged for psychiatric consultations for the boy. When a diagnosis of schizophrenia was confirmed they supported his treatment as well. When he improved, the boy returned to his college in a different city.
A few weeks later he suffered a relapse of illness in his hostel, due to non adherence to medicines. His behavior caused embarrassment to the hostel/college authorities who were unwilling to allow him to continue the course. Mr.A took it upon himself to meet the college authorities in person, explain to them about the nature of the illness, shared with them the story of his son overcoming the illness with treatment and insisted them to allow the boy to continue the course. While the boy was permitted to continue the course, he was not allowed to stay in the hostel.
Again Mr. A. stepped in and arranged for private accommodation for the boy to stay along with his mother (to ensure medication adherence) and attend college. He ensures the boy meets his doctor regularly and is regular with treatment. He was disappointed to find that authorities and teachers in educational institutions had very little or knowledge about dealing with mental health issues. He meets with the faculty in the college whenever possible and tries to educate them on these issues. He says he will be happy if at least few teachers change their attitudes towards mental health issues and extend help to students in need.
His father taught him to run a business
When M’s father came to know that his only son had schizophrenia, all his dreams about the boy shattered. He painfully realized his son would not be able to reach the goals both of them had nurtured for a long time. It took a few years for him to come to terms with the situation. Those were turbulent periods for the family when they had difficulty in understanding M ‘s behavior, managing his illness and coping with the social stigma in the midst of friends and relatives. The father was worried about the future of his daughters as well. Will the stigma of the brother’s illness affect their lives too?
He however religiously continued treatment with mental health professionals. While medical management was relatively easy, rehabilitation remained a challenge. The boy remained housebound and was very uncooperative for any intervention. The family lived too far away for daily visits to a daycare facility. The father who had just then retired from service was open to the idea of home based rehabilitation. When he saw some improvement in his son he felt encouraged. He started a small scale textile shop close to his home to keep his son engaged and employed. Initially he and his wife managed the business while the son remained an infrequent visitor. He never pushed his son and allowed him to work at his own pace initially. In a few months he was able to make him come to the shop everyday for a few hours. He continued the business despite facing losses for the sake of his son.
His patience paid dividends in course of time. The son started showing interest in the business and remained in the shop till closing hours. The father gradually left him alone in the shop for a few hours and allowed him to learn things on his own. He then taught him how to purchase and maintain goods for sale, bookkeeping etc and by the end of 24 months, M was able to handle the day to day affairs of the business on his own and could make small profits too.
Encouraged by his son’s progress, the father expanded his business. He remained very patient and understanding when his son had setbacks in health, handled his mood swings smoothly but ensured that his son remained active and productive everyday of the week.
The father trained him on money management as well. With his guidance M availed loans from banks and repaid them successfully on time.
Today M runs the business independently and is able to break even. But the father is aware of possibility of relapses and setbacks which can affect his productivity. So he has made arrangements for financial security for his son during possible difficult times. He has ensured that his son will always remain independent and live in dignity.
Caring for persons with serious mental illnesses is not a rewarding job most of the times. On the other hand it can cause burn out in the care-givers leading to physical and psychological problems. It is extremely important for caregivers to take care of their mental and physical health as well.
20 tips to improve well being of caregivers
- The responsibility of care giving need not be shouldered by the same person all the time. It can be shared.
- Caregivers should not give up their routine and interests . Caregiving need not happen at the cost of personal interests and hobbies. Pursue your interests as before and if possible include your ward too in the activity.
- Physical exercise like a good brisk walk for at least 30 minutes a day will keep you healthy and cheerful.
- Keep at least an hour a day completely for yourself and devote that time to your personal interests.
- Take short breaks once in a while and go out for a couple of days visiting friends or relatives or sightseeing.
- Break the monotony of the week by going out for a few hours in the weekend, for a movie, temple or the beach or a picnic.
- Keep a few friends with whom you can share your feelings and problems related to caregiving. If that is not possible discuss this with your ward’s case manager/social worker/psychiatrist.
- Having a few sessions with one of them exclusively for ventilating and redressing your problems is very helpful in the long run.
- Most of the time the inner turmoil stems from inability to accept the mental illness in your loved one. Try and learn more about the illness from the doctor, social worker or from books or the internet. Remember denying its presence does not make it go away.
- If you realize it is another illness like diabetes or hypertension which needs long term care (but with far less complications if properly treated) you would not feel ashamed of the illness in your ward. Do not concentrate on hiding this from others in the family and friends.
- Participate in functions and gatherings as you always do and take your ill ward also wherever possible.
- Remember unless you accept your ill ward no one else will.
- Do not feel stigmatized or inferior because of your association with an ill person.
- Remember he / she suffers more in the process than all others around.
- Meet other families which handle similar situations. You will realize you are not alone.
- Form a small group with caregivers of other patients with schizophrenia (which can be done with help from your ward’s psychiatrist/social worker) and meet regularly. The meetings need not be restricted to discussing schizophrenia and caregiving. It can be a platform for your other interests and talents too.
- If you are a parent taking care of an ill son or daughter it is better to involve others (your other children) early to make sure there is someone to take care after you.
- Do not try and “protect” your ill ward from others by justifying their difficult behaviours and trivializing problems if any. This widens the gap between them and makes it difficult for them when they take up the role as care giver.
- Make provisions for financial support for the ill person if he has no source of income. Forming a trust to take care of his property, if any, will ensure financial safety and security.
- Avail disability benefits provided by the government.
Benedetto Saraceno, director of the department of mental health and substance abuse, WHO once said, “If you have a cardiovascular problem, I would prefer to be a citizen in Los Angeles than in India," "If I had cancer, I would prefer to be treated in New York than in Iran. But if you have schizophrenia, I am not sure I would prefer to be treated in Los Angeles than in India."
