A RAY OF HOPE THROUGH CARERS HOPE
Was it just six months ago that I felt all was lost? That there was no hope left! Yes! It was so! I felt crushed in my situation with my son being diagnosed as suffering from schizophrenia. A big word that brought about a big change in my life: my dear son, educated, holding a good job, now non-functional? Was this some cruel joke, I still remember that initial period of numbness, denial, and then finally a slow painful acceptance, yes it indeed feels like a long journey! Though I had my family with me, I still felt so alone in this battle. Was my son’s illness a rare case? When I looked around my neighborhood, everyone seemed to be living normal lives, where did I go wrong? The guilt, confusion, and shame that kept building within me, people who knew about my situation kept asking me questions I had no answer to, they would advise me but it felt like they just did not know anything about the illness and changes it brings about in people’s lives. I longed for someone to understand me, someone who would give me a listening ear, without being judgemental, but where could I go ?? .. my search ended the day I joined a support group called ‘CARERS HOPE’ Functioning in Mapusa. (Initially at St. Jerome’s complex hall, but now at Sahodaya Day Care Center)
I had my initial apprehensions about joining a group like this, I attended my first meeting where the concept of mental illness was explained. I felt empowered, the next topic was the code of ethics and the point of confidentiality, which is a part of the code of ethics helped put me at ease. As I looked around, I saw about nine to ten family members who also had an ill member in their family. We were told that a group like this aimed to cater to family members of patients suffering from schizophrenia. It was an answer to my cry for help.
It was decided that the meetings would be held on the last Wednesday of every month from 4.30 pm to 6.00 pm. Families came together and narrated their unique stories to an empathetic and non-judgemental group, tears were shed, doubts clarified, knowledge gained, and hope instilled in each one of us. What a feeling of empowerment! We look forward to every meeting, we come here loaded, we share and go back strong, to love and accept unconditionally our broken member. Most of all, we know we are not alone in this battle, that there are others whose suffering seems worse than mine, we have reached a stage where we can now shift our gaze from our pain to that of others, we want to share this same strength and knowledge with those in the same situation.
Thank you ALL at CARERS HOPE. I now see a new HOPE for the future.
– A Carer
I THANK GOD FOR BLESSING ME WITH THIS SON
My son was born a normal child – healthy, strong, robust, and handsome. He grew normally until one fine day at the age of two, he fell ill. The medication given to him for the illness was not correct and had left permanent damage to his brain. At that time, we were not aware of this. Ever since he contracted this illness, his mental faculties were affected. Unaware of this fact, we pushed him to study and treated him as a normal child. We expected him to perform normally. He went on faring badly at school, repeating classes on many occasions. On account of his weakness and inability to be mentally sharp, his friends took advantage of him and abused him;
his teachers could not understand him and most of all, we at home did not understand him. Despite all his drawbacks, he managed to reach the 8th standard. We forced him to appear for his SSC privately. He, however, failed very badly. In the meantime, his attitude had begun to get more and more aggressive. One fine day when he was 16 years old, he suddenly ran out of the house and did not return home all night. We were shocked and disturbed by this abnormal behavior. The next morning he returned, looking desperate and ill. We tried questioning him but could get no rational answers. When we consulted our family doctor that evening, seeing the aggression and the accompanying paranoiac symptoms, the doctor was convinced that my son was undergoing a massive nervous breakdown! Since then life has been challenging for all of us at home. Two years later, my husband passed away, leaving me, along with my eldest son and daughter, to look after my not-so-normal son.
Life has been full of ups and downs with him. He has massive mood swings. He is suddenly very happy, and all of a sudden he gets aggressive. One never knows as to when or on what subject he will pick up an argument. He has been a source of embarrassment on so many occasions when dealing with neighbors, relatives, and friends… but then, it has all helped me to deal with him and understand him better.
He is presently under very strong medication. However, along with the medication, we have also been making concerted efforts to deal with his social life. I have personally gone around and informed my neighbors about his illness. I have requested them not to get annoyed with him when he ignores them or if he says a word that is out of place. Aware that he is not in control of his senses, the neighbors treat him differently. I thank God that he has had the enthusiasm to go to work. However, even here, it has been a time of intense trial for all of us. He cannot stick to one job, always finding fault with his superiors and colleagues. I thank God again, that he has had superiors who have understood him and tolerated his inconsistencies. Here too, I have made it a point to inform them in advance about his illness.
I have realized the fact that I have not kept his illness hidden, but rather, have spoken to all those concerned about this illness, whether it be relatives, friends, or neighbors – has made a very big difference in dealing with him and accepting him. Most people encourage him, but there are a few who, because of their insecurities I suppose, take advantage of him and fool him. By and large, however, there is tremendous understanding among people, as to how to deal with him. I have also realized that I must be patient and understanding towards him. He needs a lot of love and affection. I must at all times be alert to discerning when I must keep quiet and when I must be firm. It is only God who gives me the wisdom to deal with him. Most importantly, I have never stopped praying for him. Most doctors had given up on my son. However, I never gave up, nor will I ever give up on him. I believe that one day, in His way, in His own time, God will touch my son.
In conclusion, I must admit that it has been a trying time, a real challenge for me personally to bring up a son such as he is, but God has also richly blessed me. It has given me the grace to understand others who are not so normal. It has helped me to empathize with people and to remain humble.
I thank God for blessing me with this son, so affectionate and yet so unpredictable. What God has given He will take care of. I ask Him to continue to use me as His instrument to reach out to this poor child – now 39 years old – but at heart, still a little, frail, and fragile child!
I WILL NOT LOSE HOPE
The year 1979, was an unforgettable year in my life. Till then, life was good with a comfortable living, loving husband, and three wonderful children. I thought my life was complete, both of us making plans for the children’s future. That year my whole life turned upside down. In April, our eldest son (who was 18 at that time) – the best of three – started crying out loudly at night. We thought, maybe he was having some bad dreams. After some days he would suddenly burst out laughing at times when there were guests or at times when we went visiting. We tried to correct him. Then he used to have mood swings. At that time, we never even one minute thought that there was something wrong. When his bouts of laughing and his hygiene deteriorated, we decided to take him to NIMHANS Bangalore.
While traveling in Bangalore by car I thought that after a few sessions with the psychiatrists and proper medication, I would be getting back my son fully normal. Once in Bangalore, the doctors explained that he was suffering from an illness called schizophrenia – caused by a chemical imbalance in the blood and he had to take medicines lifelong. The seriousness started to sink in slowly. There he had to undergo ECTs. While waiting for him to be brought out of the ward, I was asking myself, why my son had to undergo the torture. Was I too strict with him, with his studies, or was it due to some curse? We returned to Goa after one month. What followed was a nightmare. He used to get severe reactions to medication. If with certain medicines he used to be aggressive, with others he used to get suicidal tendencies. All We could do was to stand and helplessly watch our son suffer. We were ready to do anything, get anything from anywhere in the world that would make him better. In between all this, my husband passed away suddenly which made things worse – more medications, more ECTs. He was put in halfway homes. Nothing helped. I used to have my share of embarrassment with him around, like him shouting at me in busy streets, spilling food on the table in a crowded restaurant, etc. At times I was so helpless, that I wanted to take him along with me, board a train to an unknown destination, and poison ourselves.
Now he is at home. He still has his good and bad phases.
When he is in a bad depressive phase, during the nights he will be walking up and down in his room and corridor, while in my room, I’ll keep awake holding my breath listening to the sounds he makes, and praying that he will be comfortable soon. When his good phase starts he will be
always smiling, listening to music, and sleeping peacefully while I’ll be praying that this good phase will last longer.
Despite all these troubles, I thank god for my other two children who are doing well and always supporting me. Very often I hear other parents whose offspring suffer from schizophrenia complain about how their relations shunned them because of their child’s illness. For myself, I thank God for my wonderful relatives who are always supportive of whatever I do for my son. I thank God for all the facilities that I have to make my son’s life comfortable. The journey for us is difficult but I will not lose hope.
THAT JOURNEY CALLED LIFE
My share of God’s blessings has become more meaningful and valuable to me especially when I realize what all goes into looking after a so-called ‘abnormal’ individual….my eldest, unmarried daughter. Depression is a killer, it kills not only the heart and soul of the sufferer but it stifles and suffocates the other beings who struggle to care for the sufferer. This killer disease attacked my daughter almost ten years ago. As her mother and not a very educated mother, I was unable to deal properly with her instability of the mind … perhaps because I couldn’t really understand what she was going through.
Society looks very negatively and unfavorably on such mentally ill individuals and despite having a family, I found myself alone coping with this ‘sick’ daughter of mine. Earlier, not being able to comprehend and understand that my daughter was sailing through rough waters, I used many occasions to vent out my anger on her. However, the meetings at Carers Hope for the parents/wards of those suffering have been very beneficial to me. I now have greater patience because I understand that these poor traumatized souls have no control over their thoughts, feelings, and actions. I have also come to realize that there are other people whose suffering is much more than my suffering. At such moments I truly count my blessings. I have learned so many things in all these years ….. lessons in patience, lessons in controlling one’s anger, lessons in loving without any returns.
God is my hope and strength!!!