Living with schizophrenia in the family: A guide for caregivers

“Being a lifelong carer to a parent with schizophrenia and having lost a younger sibling to suicide, my own lived experiences have deeply influenced my passion for making quality mental health help accessible to families with long-term suffering and acute distress. My mother has had a 20-year undiagnosed, untreated illness which took four-five years of management with oral and injectable medication, consulting multiple doctors and several hospital admissions; before finding a stable treatment plan with lasting outcomes.

“My mother has had five-six relapses in the last decade, but they are now understood, identified and promptly treated. Through this time, she is able to laugh with her granddaughter, share family meals, and feel a daily peace that once felt unreachable.” - Neha Kirpal, a carer, healthcare entrepreneur and mental health ambassador.

“I believe that my personal lived experience contributes significantly now to my professional care approach. I continue striving to design services that identify the current care gaps. It is essential to treat the illness with competence and a combination of interventions that can include medications, working on treatment adherence, education about the illness, family support, caregiver involvement and inpatient treatment for some over the long term course of the illness.” - Dr Kavita Arora, who grew up with a mother diagnosed with schizophrenia and opted to become a psychiatrist, besides being a carer to her mother. 

Here are some strategies to help a loved one diagnosed with schizophrenia:

Recognising the signs

It’s important to understand the illness, initiate treatment and not define the person as the illness. Schizophrenia often develops gradually. Sometimes, in the acute stage episodes, the behaviour can include violent outbursts, conspiracy theories and unfounded suspicion about someone they had trusted earlier. What may be confusing for the onlooker because of its natural course, is that often in parallel to the above symptoms, the personality is well preserved in certain areas and the individual may appear quite able and coherent in some of their daily contexts. Knowing the signs helps families seek support early:

Positive symptoms: added experiences that seem out of the ordinary to the person’s usual self: hallucinations, (hearing voices or seeing things others don’t and responding to them as if they are real), delusions (fixed false beliefs that do not seem to have an understandable reason), and disorganised speech or changes in behaviour from the usual self.

Negative symptoms: loss of previously present function — withdrawal into self, or from the social circle, reduced emotions, with the range becoming narrower than is usual for the person, lack of motivation and seeming pre-occupation, neglect of self-care, hygiene and social norms.

Other symptoms include difficulty concentrating, remembering or following conversations. Decreased or erratic sleep-wake rhythm, significant changes in appetite or weight are also some signs. 

If you notice these signs in someone you love, start by gently encouraging professional help at the earliest. 

Treatment and managing the illness

Schizophrenia is a lifelong condition, but it doesn’t have to be a life without meaning, connection, or recovery. The right treatment and support systems can help you rewrite the story.

Seeking timely help to prevent further progression of the illness is key. Love and care, while powerful, are not substitutes for professional care and clinical/medical intervention for the illness. 

The right kind of medication, therapy and family support can transform lives, but resistance and mistrust are common. Identifying personal goals rather than “clinical outcomes” of disease or illness may be more helpful to engage in personalised collaborative care rather than ending up with involuntary treatment, which may be the only option for a subset of people who develop schizophrenia.

A delicate balance

Caring for someone with schizophrenia means walking a delicate balance: offering support without losing yourself. When we can say, “this is the illness speaking, not my family member,” we help to protect ourselves from disappointment and resentment, and preserve long-term relationships.

(The writers are Founding Cohort - India Mental Health Alliance (IMHA). Their experiences are part of the book, ‘Homecoming: Mental Health Journeys of Resilience, Healing and Wholeness’, co-authored by Neha Kirpal and Dr Nandini Murali, published by Westland Books.)

Caring for the carer

•Learn about the course of the illness over time. Understanding possible triggers and symptoms demystifies behaviours that might otherwise feel personal or hurtful. 
•Set compassionate boundaries. It’s okay to step back when interactions become overwhelming. You are not abandoning your loved one — you are preserving your ability to stay supportive in the long run.
•Seek your own support tribe or groups. Talking to others who have walked a similar path helps you process complex emotions, find validation and solutions while ensuring you don't feel alone. 
•Build a life beyond caregiving. Your joy is not betrayal; find ways to bring lightness, meaning and purpose into your own life as a carer. 
•Accept that guilt will visit — but don’t let it stay. It’s a visitor, not a verdict. 
•Ensure you protect the most vulnerable in the family; children who are unable to process and navigate life in a dysfunctional home environment must be supported.