Through the Eyes of a Young Caregiver

My mother was diagnosed with a mental illness when I was in middle school during the early ’80s. Being a young caregiver for a loved one with mental illness involved struggles no child should ever have to endure. Her health challenges presented phases of unbearable beatings, heartbreaking and unloving words, unexplainable pain, feelings of exhaustion, periods of confusion, despair and hopelessness.

I would ask myself over and over: What’s wrong with momma? How will I cope? Why doesn’t she love me anymore? The answers to my questions were like building blocks to understand how our lives were being re-shaped and molded. The safe haven I grew up in was crumbling apart all around us.

There was so much fear and “cover up” about what was going on that no adult family member really wanted to deal with it. What I quickly understood about mental illness is that it’s hard to cover the actions of someone experiencing it and acting as if it doesn’t exist. Momma’s unusual behavior was the “whispered talk” amongst family and friends. You see, she was suffering from bipolar disorder.

The Switch from Child to Caregiver

Mental illness has a way of taking the center of attention. Even for caregivers, it owns your thoughts, mood, space and energy as if you’re a part of its existence until you find a way to take back what’s been stolen. Where could I go to seek refuge? She was my single loving parent, my trusted source, my caregiver. As time passed, our roles of mother and daughter – caregiver and care receiver – switched. Momma needed me as I learned time and time again.

My mother was no longer the person I knew.

Her sleepless nights for weeks at a time, the constant verbal and physical abuse for no apparent reason or cause, her raging trips to grandmother’s house, just to name a few instances, was our new normal. Before she was diagnosed, she sought care through pastors and leaders of the church. Her Christian values and worship were a refuge for her, bringing strength and comfort.

During this time of searching, she was getting sicker. Momma blamed herself for the racing thoughts, instability and a host of other things she felt. I even blamed myself, especially when I felt I made her mad. It wasn’t her fault, or my fault. It wasn’t anyone’s fault.

Finding The Tools I Needed

Seeking help for her and educating myself gave me a sense of security and tools to cope. After multiple hospitalizations against her will, the rollercoaster of going on and off medications for years, and therapy sessions with her doctors, we learned how to coach one another through the uncertainties of the illness.

I now know there is no shame in caring for and supporting someone with a mental illness. It’s a greater shame when we do not tell our stories. Family issues about mental illness are often shared from an adult perspective, but rarely through the eyes of a child who has a parent or sibling with mental illness. I believe telling one story at a time, including ours of triumph and recovery, will help make mental illness easier to understand, raise awareness and hope and lessen the burden of stigma and negative attitudes toward those affected.

Here are some of the things that helped me as a caregiver:

• Education – I read lots of literature, participated in family therapy with my mom and other family members and took the NAMI Family-to-Family program.
• Patience – I tried to remain calm during the hard moments even though it was very difficult. Patience was key as my mother’s healing took many years.
• Communication – It was helpful to talk to my mother about the illness, and any struggles I was experiencing (while still being respectful).
• Prayer – When I was praying, I never felt alone. It made me feel connected and secure with God.
• Self-care – My childhood suffered for years while living with and caring for my mother. I learned about the importance of self-care much later in her recovery, and it helped me to focus on what’s important to me and the things I enjoy doing.
• Advocate – Our testimony is life-giving and saving for others. We win people over when we share our story. Family support like any other illness is critical to helping our loved ones walk in wellness. Whether on a small or large scale, advocating helps change attitudes.

My mother has been walking in recovery for over 25 years. Oh, what a blessing!  We’re “besties” now, and I’m still learning to embrace and set boundaries as a means of surviving this life in love.
 

Rhonda M. Lee is a New Orleans, Louisiana, native and married with two adult sons. She is certified to lead and facilitate NAMI programs. Her interest is to help diverse children and families whose lives are affected by mental health conditions in a transparent way. Rhonda’s first book, “For the Love of Bipolar” and website: rhondaleeint.com tell the story of her family’s journey.