My Experience Of Living With A Schizophrenic Loved One
Being a caregiver requires its own skill-set and doesn’t come with a guidebook
My mother is diagnosed with schizophrenia for more than four decades now. The earliest memory of me realizing that something was not right with Ma was when she locked herself with me in a room and set it on fire. Well, not literally. She lighted a fire in a garden pot and threw random pieces of cloth in it. The smoke emanating from the windows alerted the neighbours who then rushed to our home to bolt the room open.
I vividly remember Ma refusing to open the door and telling me in hushed whispers that they will kill us if she opens the door. I don’t exactly remember exactly how we got her to open the door but I do remember my father snatching me from her side and telling her to stay away from me. I couldn’t register why he said it. But I did register that Ma wasn’t being her usual self. She didn’t ask me for food or check on my clothes. She kept screaming out loud about random things. I was scared. For her, of her.
There were uncountable similar such instances growing up. She would throw all the household stuff outside believing them to be touched by evil. She taught me to touch my food with my left foot before eating so that the force of evil is cut-out. She had several bouts of illness. But she always recovered. A doctor came home to give her some injections. She would remain dazed for days. During those days, my father would be responsible for household chores. Eventually, Ma would become her normal self again. Until the next bout struck.
This was the routine I grew up in. It wasn’t until I went to college that I realised that what we were doing with her wasn’t treatment. She wasn’t being treated for her illness at all. She was just being drugged. I vowed to myself to get the right treatment for her and be a good daughter.
That was the worst decision of my life.
I took Ma in to stay with me as soon as I got a steady job. My father was, to be brutally honest, delighted. He was exhausted from her bouts of illness. He had made it amply clear that it was time for the kids to take up the mantle of taking care for her because he no longer wanted to. I blamed him a lot then, but in hindsight, I shouldn’t have.
You see, what I did not realize before taking up the role of a caregiver was that I did not know what the role of a caregiver is. I just wanted to help. But that is not enough when you are taking responsibility for a human. Even with the best of intentions, one could be the worst caregiver if they have no inkling of what the role entails.
It was easy at first. Ma was really happy to get out of the toxic relationship her marriage had become. Staying with me was like a dream-come-true for her. She had always fashioned dreams of earning and staying on her own. Seeing her daughter do that and take care of her seemed to fill her with pride. She did everything she could to make my life easy. It was pretty good. Until. The hallucinations returned.
My job as a lawyer meant long hours of work. She was alone for 10–12 hours in a small one-bedroom flat. It started with little things. The glasses were kept upside down, the mattresses were sprinkled with water. I was too busy to notice the signs. She was beginning to talk less. Her responses to my monologues were becoming fewer and far between. Until one day she lost control. She locked the door of our room asking me to stay in because there were people out there to kill us. She threw all the kitchen supplies suspecting they were poisoned. Switched off electricals fearing death by short-circuiting. I had a deadline to report to and she wouldn’t let me out. So I acted like a real adult — stomped my foot and screamed at her, branded all her fears as BS and marched off to work.
I found her missing from our home when I returned back. She had left. Her phone was discarded on the kitchen table. That was the precise moment I felt real panic in my gut. Until that moment, I had various moments of distress and panic but never did I have to deal with it all alone. For the first time, I found myself single-handedly responsible for my beloved schizophrenic mother who clearly was not in a fit state of mind. I was clueless. I knew no neighbours so asking around was not an option. I went out on the street to look but, obviously, that was futile. I called up my family who were all in different cities and got equally panic-stricken on hearing the update with a faint note of blame. With no help, I just decided to wait.
Midnight, she returned home. She was shit-scared and completely convinced that she just managed to avert her death. It was heartbreaking to see her like that. I had imagined I’d be angry at her when she comes back. But I realized at that moment, this is not the Ma who has brought me up. This is the Ma who needs help. But I was helpless myself, what help could I offer.
Eventually, a friend of mine got me the contact of a psychiatrist. I got an appointment and after uncountable cajoling and pleading, somehow made her come with me. What followed was a series of events, with lots of yelling and screaming and name-calling. But in the end, she took the medication.
This was the first of a series of breakdowns Ma had in the course of three years when she stayed with me. Every time she did things which made me so mad at her. I made sure I got her to know how big a burden she was to me and what problems she has caused me by staying here. It was heartless and stupid and completely out-of-line for me to do it. I had no idea how to handle the stress and I felt like a victim. This was why I said this was the worst mistake of my life. I was not prepared to be a caregiver. In my earnestness to help her, I have scarred her for life with my naming and shaming.
The role of a caregiver is difficult. It needs its own skill-set and awareness. There is no guidebook to being a caregiver to a mentally ill patient. Its frustrating, annoying, lonely job. We need help. Caregivers need to reach out and seek therapy themselves to cope with the experience. It is tough to see you’re loved completely deranged. I learnt it the hard way until I had my own breakdown. I went to therapy and for the first time in 25 years of my life, someone told me that is okay to be angry, frustrated, annoyed, victimized, even cursed. Just remember, she is your mother.
I am not going to give directives on how to be a good caregiver. That is a unique journey for every caregiver to take. There is no template that can be followed. Just remember that loving someone takes more than just love.
It is easy to run away from responsibility to justify your actions by saying you deserve better. I know of people who have given up on loved ones who suffer from mental illness because they think that anything that doesn’t help you in moving forward deserves to be left behind or that outgrowing toxic past by letting go and stopping to care is the best way to handle it. I don’t think so. Believe me, I have been there. Wanting to leave it all, running away from all my past experiences, leaving my responsibilities, thinking to myself that I have had enough of it.
But I am not the victim here. The real victim, I should say, the real hero, here is my Ma. She is the one suffering, recovering, progressing with life, breaking down again but recovering yet again. Mental illness is not a choice. Don’t blame people for being mentally ill.
Relationships are investments, not hobbies. I have coped with another family member suffering from schizophrenia, seen him attempt to commit suicide, but I know better now. I am a caregiver. The least I can do is help the people I love to cope with it. I am not here to judge, berate, advice or even guide them. All that I expect myself to do is talk and help. And be loyal to my own peace of mind. What if there is a conflict? I have always kept my mental health as a top priority over my role as a caregiver. You cannot help others if you chose to not help yourselves.
