She always called herself the Black Sheep of the family but so was I though not to the degree she existed.
My sister Jackie is developmentally delayed and mentally ill and has never gotten treatment her entire life. Now 66, she remains stuck in a teenage phase, and it is challenging to say the least to have a normal conversation with her. She is also very attached to her religion, which is a strict, rigid one so that makes things even more difficult for us all as she twists things we say and no matter how much we do for her it’s never enough.
I remember when I was little, Jackie used to chase my sister Laura and I around the kitchen table with a butcher knife. She was always getting bullied at school and my parents were getting called to the principal’s office on a regular basis. At one point some girls at school threw salt in her hair. Finally, she couldn’t take any more and was expelled from school at 16 for fighting back. Back then that meant you didn’t get to come back at all, at no point. So, Jackie left home at that age and got involved with heavy drugs and drinking as well as going from pillar to post to counteract the effects of her conditions and to escape our dad’s abuse.
Since she was eight years older than me, I was too young to understand where she was coming from. In the 60s and 70s the medical community didn’t have the awareness to treat problems such as Jackie’s and she paid for that in spades, eventually being thrown into a state mental hospital where she went through even more trauma.  Â
Laura, who was four years older than me and a former therapist, told me that in today’s world Jackie would be diagnosed mentally retarded. It’s a tragedy that she never got the help that she needed which resulted in a violent, chaotic life that led to her losing custody of her two kids when she was in her 20s and raising a daughter who turned out to have a drug problem. Jackie continues to suffer the pains of her mental problems in various ways, all sad and maddening.
According to research, it’s good to educate yourself about your sibling’s condition and support systems while expressing your feelings to a therapist or mentor.
My sister Laura has recently discovered that she can best communicate with Jackie by talking about our favorite things to watch on TV as children or activities we did in the 1970s when we grew up. That prevents Jackie from talking about all the negative stuff over and over that has gone on in her life and continues to do so. It’s also recommended to celebrate the sibling’s achievements no matter how small.  As much as I want to, I can’t expect Jackie to act like her peers or other family members. Seeking support groups for siblings dealing with mentally challenged brothers and sisters is crucial as well.
Recognize that it’s normal to have feelings of frustration and not feel guilty for having them, experts say. Demonstrate positive behaviors and encourage your disabled sibling to try new things.
On a personal level, having consulted with my mentor, I’m not obligated to call Jackie every day or every week, maybe just every two weeks if I’m in a good space myself. My mentor helped me understand that I couldn’t save my sister who doesn’t want to be helped and to be cautious regarding her; that I’m not her savior, and I don’t need to continue taking verbal abuse from her. I had been codependent regarding Jackie and had the old idea that I needed to fix her.
The Sibling and Leadership Network is dedicated to advancing causes important to the millions of people who have siblings with disabilities. In addition, sibnet is the first and largest online community for adult brother and sisters from around the world. It’s a space for siblings to connect and share information with each other from their perspective and you can join at  https://siblingsupport.org/connect/sibnet/