'From Child Carer to Mental Health Co-Founder: 40 Years of Loving My Mother With Her Schizophrenia’

Neha’s mother lived with undiagnosed and untreated schizophrenia for more than 20 years. In 1994, fear and paranoia led her to leave home with Neha’s younger brother. She remained away for 10 years. The family had no name or understanding for what was happening at first.

Her absence changed everyone’s lives. Neha and her father searched for her, visited doctors, and eventually learned that she had paranoid schizophrenia. When they found her, treatment began, but reunion did not restore the old relationship. Neha saw a person she no longer recognised, and managing hospitalisation, medication, and treatment became part of her life.

The experience left Neha carrying fear, shame, guilt, anger, and exhaustion. It affected school, friendships, confidence, and her sense of self. Later, friends, therapists, support groups, and sport helped her begin grieving and rebuilding. She eventually became a mental-health organisation co-founder, helping create care for families like hers.

Schizophrenia is a serious mental illness that can affect how a person perceives reality, thinks, feels, and relates to others. Hallucinations are experiences, such as hearing or seeing things, that others do not experience. Paranoia involves strong fears or beliefs that others may intend harm. These symptoms can make ordinary situations feel dangerous.

A person may also have limited awareness that illness is affecting them. This is sometimes called reduced insight. It is not simply stubbornness; the illness can make the symptoms feel completely real. In the article, Neha’s mother’s hallucinations filled her with fear, while her paranoia contributed to leaving her family. Doctors later identified the condition as paranoid schizophrenia.

Treatment can reduce symptoms and help restore stability, but reaching care may be difficult when someone does not recognise a need for it. The article shows the consequences clearly: Neha had to manage treatment while rebuilding a relationship damaged by years of illness and separation.

The illness remained undiagnosed and untreated for more than 20 years of Neha’s mother’s life. For the family’s first years, there was no name for the distress, unpredictability, hallucinations, or paranoia shaping their home. That lack of understanding made it harder to identify the problem and find appropriate care.

A major turning point came in 1994, when Neha’s mother took Neha’s younger brother and left home. She was gone for 10 years. During that period, Neha and her father began seeing doctors and learned that the family had been living with paranoid schizophrenia. They also spent years looking for her and trying to bring her to safety.

When her mother was found, treatment began, but the long delay had already changed the family. Neha had to manage hospitalisation, medication, and treatment options. The figures show both the prolonged absence of care and the decade-long separation that followed the illness’s crisis.

When severe schizophrenia remains untreated, symptoms can dominate a person’s experience and disrupt safety, work, independence, and relationships. Hallucinations and paranoia may create overwhelming fear. Without care, the person may withdraw, become separated from loved ones, or struggle to recognise that support is needed. The effects can also spread across the whole family.

Neha’s mother’s fear and paranoia led her to leave home with her son. She was away for 10 years. After treatment began, Neha said the person who returned felt like someone she did not recognise. Neha then managed hospitalisation, medication, and treatment options while trying to work and support herself.

The damage was not limited to the illness’s symptoms. Neha carried shame, guilt, fatigue, resentment, and a low sense of self. The relationship could not be repaired quickly; she wrote that it would take a lifetime to mend and heal together. Early care and family support therefore matter greatly.

Neha and her younger brother became primary caregivers because their mother’s illness disrupted the household and removed her from home. The article describes the children as her primary caregivers for more than 20 years. At first, the family did not understand the illness. After their mother left, Neha and her father sought medical help and worked to find her.

Their responsibilities grew after the family located her. Neha helped bring her to safety and care, managed hospitalisation, tracked medication, and considered treatment options. She did this while in her 20s, seeking employment and trying to earn a living. She was also treating a parent who did not realise she was ill, making the situation especially difficult.

Caregiving affected Neha’s entire development. She felt responsible for protecting her mother, minimised her own needs, and became hyper-independent. Friends, therapists, support groups, and sport later helped her process the burden and rebuild a sense of self.

Effective support for schizophrenia usually combines medical treatment with practical and emotional care. Antipsychotic medication can reduce psychotic symptoms. Therapy, family education, rehabilitation, and community support can help with coping, relationships, daily functioning, and recovery. A coordinated plan should also address safety, treatment preferences, and the caregiver’s wellbeing.

The article describes Neha’s mother receiving hospitalisation, medication, and treatment after the family found her. It also shows why treatment can be complicated: her mother did not realise she had an illness, while Neha was trying to manage care and earn a living. Neha herself used friends, therapists, and support groups to grieve and regain balance.

Care must be individualised and led by qualified mental-health professionals. Families should receive clear information and support rather than blame. The article’s wider lesson is that treatment cannot focus only on symptoms. It must also rebuild trust, protect safety, and strengthen the people providing care.

Mental-health care must include caregivers because illness affects the whole family, not only the diagnosed person. Caregivers often coordinate appointments, medication, hospitalisation, safety, and daily support. They may also experience grief, fear, resentment, guilt, exhaustion, and shame. Without support, they can minimise their own needs and lose their sense of self.

Neha describes feeling that her mother’s suffering had to come first, even when Neha was overwhelmed or burnt out. She became hyper-independent while managing treatment in her 20s, finding work, and trying to rebuild a relationship after a decade apart. Friends, therapists, support groups, and sport helped her cope and eventually grieve her childhood losses.

Supporting caregivers can improve continuity, trust, and safety around treatment. It can also reduce isolation and help families respond with knowledge rather than blame. Neha’s later work with Amaha and the India Mental Health Alliance reflects the need for a care ecosystem built for families as well as individuals.