Raising my niece while managing schizophrenia

This is a composite story, drawn from common experiences shared in the schizophrenia community. It does not depict a real individual.

I am 51, a woman, and I live in a small town in central Ohio. My niece is nine. She has been living with me for almost five years. Her mother — my younger sister — died of an opioid overdose when my niece was four. I was the only adult relative who could take her in. I was also, at the time, three years out from my last hospitalization for schizophrenia and on a stable regimen of clozapine and a long-acting injection. The county social worker had to make a determination about whether placing my niece with me was appropriate. She did, with conditions. We have made it work, with a great deal of help.

I am writing this because most of what I read about kinship care assumes the caregiver is healthy and most of what I read about parenting with schizophrenia assumes the parent has biological children they have raised from birth. Becoming an aunt-mother to a grieving four-year-old at age 46 with a serious mental illness is its own situation. Other people are in it. They deserve a story.

The beginning

The phone call came at 11 p.m. on a Saturday in November. My sister had been found in her apartment in Columbus. My niece had been at a friend's house. The friend's mother had called the police when my sister did not come to pick up at the agreed time. By the time I got to the police station the next morning, my niece had been awake for fourteen hours and had only the clothes she was wearing.

I did not have a plan. I had a guest room, a relatively stable mental health, a small but consistent disability income from SSDI, and a deep love for my sister and her child. The social worker was matter-of-fact: my niece could come home with me that day on an emergency placement, with formal kinship care evaluation to follow over the coming weeks.

Disclosing my diagnosis

The hardest part of the kinship evaluation was the conversation about my schizophrenia. I disclosed it in the first home visit, before they could find out from records. I had three things working in my favor:

• I had been hospitalization-free for three years.
• I had a treatment team — psychiatrist, therapist, case manager — that the social worker could call and verify my engagement.
• I had a long-acting injection rather than oral medication, which meant the social worker could verify adherence by looking at administration records.

I also had three things working against me — every horror story the social worker had ever heard about a parent with schizophrenia, the fact that I lived alone, and the fact that I was older than most kinship caregivers. The social worker did her job. She talked to my psychiatrist. She talked to my therapist. She talked to my older brother, who lived two states away but vouched for me. She approved the placement.

The condition was that I would have a Parents Anonymous-style support group requirement, monthly check-ins with a kinship caseworker for the first year, and a documented backup caregiver — my brother — in case I was hospitalized.

The first six months

The first six months were the hardest of my life, including the year of my first episode. My niece was grieving. She had nightmares, she wet the bed, she stopped speaking for a stretch of about three weeks. She was four. She had lost her mother. She was living with an aunt she had only seen at Christmases.

What I learned to do, in this order:

1. Got her into trauma-informed therapy. A child psychologist who specialized in childhood bereavement saw her weekly for almost two years. The county covered it through Medicaid because my niece qualified through the kinship placement. The therapist coached me on how to be available without overwhelming her.
2. Built a routine I could keep on a bad day. Wake at 6:30. Breakfast at 7. School drop-off at 7:50. Pickup at 3. Snack and play. Dinner at 6. Bath at 7. Bed at 7:30. The routine was non-negotiable. It anchored both of us.
3. Talked to my psychiatrist about parenting. She and I rebuilt my relapse prevention plan with a new layer — what would happen to my niece if I needed to be hospitalized. We added formal contingency planning with my brother. We agreed I would not stop or change any medication without her explicit sign-off.
4. Built a network of trusted adults. My next-door neighbor, an older woman whose grandchildren were grown, became someone my niece could go to in an emergency. My niece's best friend's mother became my closest friend. My therapist met my niece, briefly, so that there was a face attached to the name.
5. Asked for help out loud. This was the hardest. I had spent decades hiding the cognitive cost of my illness. Now I had to ask for grocery delivery on the days when I could not drive, rides to school on the days when I was too tired, and respite weekends with my brother every two months.

Talking to her about my illness

I waited until my niece was six to begin telling her, in age-appropriate ways, what schizophrenia was. The first conversation was about ten minutes long. I told her my brain sometimes worked differently than other people's brains. I told her that I took medicine to help with that. I told her that on rare occasions I might need to go to a hospital for a few days, and if that ever happened, Uncle David would come stay with her, and I would always come back.

She asked a few questions, accepted the answers, and went back to drawing. Children are often less frightened by clear language than the adults around them imagine. The piece on talking to young children about a parent's mental illness was a useful guide for me when I had nobody else to ask. The NAMI family resources also helped, though most of them assume a different family configuration.

What is hardest five years in

• The cognitive load. School forms, doctor appointments, soccer signups, parent-teacher conferences. The mental work of parenting compounds with the cognitive symptoms of my illness in ways that are hard to describe.
• The isolation. Other parents at the school have known each other since their kids were in preschool together. I am the older aunt. I am also the only single parent on the block. Building friendships has taken work.
• The fear. Every time I have a bad night I think, "What if this is the start of a relapse?" The fear is louder when there is a child in the next room.
• The judgment. Some people, including a couple of teachers, have made comments about my "situation" that I have had to learn to let pass.

What is working

• My niece is in third grade, doing well, has friends, plays soccer, and recently asked for a reading lamp for her birthday.
• I have not been hospitalized since taking custody. I attribute this to the routine, the deeper engagement with my treatment team, and the slow accumulation of a real life.
• My niece and I have a relationship that does not look like any other family I know, and is its own thing.
• I have learned, against my prior nature, to ask for help and to receive it.

What I would tell another aunt or uncle considering this

• Do not lie about your diagnosis to social services. Disclose, document your stability, and bring your treatment team into the conversation.
• Build a written backup plan for hospitalization before you need one.
• Get the child into therapy early — kinship transitions involve grief that does not show up immediately.
• Lean on the systems that exist — kinship navigator programs, Medicaid for the child, county family support services. The Grandfamilies & Kinship Support Network has resources for non-grandparent kinship caregivers too.
• Treat your own treatment as the foundation of the parenting. The medication appointments, the therapy hour, the Sunday rest — all of it is part of being a parent now.

For more, see parenting with schizophrenia, raising grandchildren after schizophrenia, and teaching children about schizophrenia.

This article is for educational purposes only and is not medical advice, diagnosis, or treatment. Always consult a qualified mental health professional. If you or someone you know is in crisis, call or text 988 in the US, or your local emergency number.