My Mentally Ill Sister Was Often My Caregiver. She Terrified Me.

This story is based on an interview with the editors of The Doe.

I'm the child of East African immigrants. Of their four girls, I'm the youngest by quite a bit; my sisters were 13, 11, and seven when I was born. As a result, they weren't just my siblings—they had to participate a lot in my caretaking. Caring for a young child from 3pm until early evening is a lot for someone who's eight or nine years old. This was the early ‘80s, when things were a little fast and loose when it came to parenting. And my parents worked a lot.

I don’t have many early memories of Sarah, my oldest sister. Even though she was the oldest, she was the least involved in my care when I was younger. When I cried as a baby, my dad would wake up my second-oldest sister to tend to me—not Sarah. There was always an understanding: “Don’t bother her.”

She went to college pretty close by, and she would come home every week. She would play my dad’s fancy stereo and blast music and talk about college experiences that just felt like another world. I thought, One day, I can experience these things. These are really wonderful memories. But not too long after that, the visits home stopped. It suddenly turned really dark and serious. Sarah had to go away to a mental health facility and was diagnosed with depression. All I really understood was that my sister was gone and everyone was sad. 

She came home from the hospital the summer I was seven years old. My parents were at work all day, so I was alone with her and my other sister, Karen, who was 14 at the time. That’s when the chaos really started. Sarah was severely depressed, but she would also kind of ping-pong between that and mania. She stopped taking her medication early on, although my parents believed she was still on it. When Sarah was manic, she was irritable, angry, and paranoid. I became a student of her, because so much of my comfort level at home was based on her mental health. I could tell if she blinked slower that day. I closely observed her, so I would know what was coming next.

This is one of my most vivid memories: When my sisters and I were all sitting at the kitchen table, Sarah got a knife and held it to her wrist. Karen started wrestling it out of her hand and yelled at me to go downstairs. I did what I was told and turned up the TV. That was one of my escape mechanisms; I would also listen to my Walkman really loud to drown out all the yelling. In this moment, Karen, who was a child herself, felt like she had to be my protector. And Sarah really should not have been alone. (Being with two children is the same thing as being alone when you're in a mental health crisis.)

At a really young age, I decided that I had to figure out how to be safe.

At a really young age, I decided that I had to figure out how to be safe. I always made sure to have friends and a place to go after school, because my fear was not knowing what I was going to find when I came home. It was bad enough watching someone in a bipolar state, but there was also the verbal abuse. Sarah would rant about things that didn’t make sense, for hours, sometimes until 2 in the morning. She would tell me about wildly inappropriate things, like her sexual encounters. In her mind, I think she thought of me as her confidant. 

There was one summer, when I was about 8, I was doing swim lessons at the community pool. It was my sister’s job to take me, which meant it was my job to wake her up. Every morning I would get cussed out. I would tell my mom that I just wanted to walk by myself, but my mom would insist that Sarah take me. I would go to my swim lesson emotionally wrecked. Oftentimes I would be in the pool just crying and shaking. The swim instructor would ask me what was going on; I didn’t have the words to explain it.

One summer when I was nine, my parents left together for a long weekend. Sarah was supposed to be the one watching me. As soon as my parents left, she left too and told me, “If you tell anyone about this, I’m going to kill you.” I took that very seriously. The whole weekend, I just hunkered down. I made myself a pot of rice. I remember being really, really scared, especially at night. I had a vague sense of like, She’s not supposed to do this. Your parents would get in trouble for this. I didn't have the guts to tell them, but I did secretly hope someone would just discover that I was alone. 

It happened again another weekend, that same year. A close family friend, an uncle-type-person, called and found out I was alone. He came and got me, and I spent the weekend with him and my cousins. There were a few adults in my life who cared for me in this way. They didn’t know about my sister’s illness; it was not to be discussed. But they knew I needed something. They were like saviors to me. Any time I could have any kind of normalcy was so precious. For about a month, I had a former Girl Scout troop leader pick me up and bring me home with her after school for three hours. It was like heaven. But one day my mom told me I wasn’t going over there anymore. I never found out why.

I remember one time trying to tell my mom what was going on. I started to tell her that I didn’t like being alone with Sarah, that it made me scared. But Sarah heard me through the door and she started yelling at me to be quiet. My mom didn’t say anything more. 

My sister lived at home until she was 30 and I was about 17. There were some times of “remission,” I guess you could call it, because bipolar disorder is cyclical. But she had a big manic relapse in my early college years. Around that time I started to piece together all the things that had happened in my childhood. First I was angry at Sarah, and then later I got mad at my parents. When you're in college, you get a glimpse at other people's lives and you can compare. It made me realize all this was not normal and not healthy.

It was a little bit of an awakening for me, but progress was very slow. I was still programmed to run to her anytime she needed help. Even when she moved out, we spent a lot of time together, because of a Stockholm syndrome-type urge to still be attached to her.

As I got older, I tried to ask my mom, “Why did you leave me home with her? Did you know how sick she was?” My mom immediately felt she was being attacked. She would tell me how hard it was for her. She told me a story about a night where she had to drive around in a thunderstorm looking for Sarah, but then I started thinking, Where was I? I was at home, asleep, alone again! She didn’t make the connection. My dad has been able to at least listen to these stories, but I think my mom feels so defensive because she was the one who was there more.

I’m now 40. I’m married. A few years ago my life got complicated: My father-in-law passed away. I had to have surgeries for fibroids. I was doing IVF. I couldn’t always drop everything for my sister. I realized that I cannot attend to her in this way. It's killing me. 

So I went essentially no-contact. This was a big deal in my family culturally—you’re always supposed to forgive your family. My parents still don’t accept it, and it’s taken a while for my other sisters to support me, too. But I took a stand. I was like, I cannot be her caregiver. I can't be part of this anymore. I have people in my life that need me. I need me. To this day, I don’t think anyone in my family understands that I was often with Sarah morning til night with nowhere to go. I was the only one who had that experience. Everyone else could leave.