What It’s Like To Have A Parent With A Brain Disease

James Heilman, MD
James Heilman, MD

My mom was my best friend. There was something about her love that made me feel like I would always be her little baby no matter how much older I got. I can remember crawling into her bed as a teenager and we would watch TV as she would hold me and run her fingers through my hair. In those moments I could feel my heart breaking a little knowing that we were both growing old together. Sometimes I would just start crying and she would ask me what was wrong and I would tell her “I don’t want to lose you.” She would reassure me that she was never afraid of dying. When you are younger you think your parents are infinite and will always be around for you, but as you get older and understand how life works, you understand how quickly life goes by and they start to rely on you.

When I was a freshman in high school, my mom had to undergo emergency brain surgery. I didn’t realize the severity of the procedure and the fact that it was highly possible that I may never see her again. Luckily, everything went fine with the surgery and after a few months she was back to her hardworking, Superwoman self. Years later I was back and forth from LA and she was seemingly fine but here and there she would lash out for no reason, forget what she was about to say, or she would repeat something she had said ten minutes prior. In my head I knew something was wrong but I never wanted to believe it. Suddenly, what seemed like overnight, all the simple things in life seemed to cripple her. She would walk very slowly as if she was terrified of her next step, a conversation would be a task, and even boiling water was dangerous for her to make. I remember we took her out for Mother’s Day once and the whole restaurant was whispering and making fun of her for how slow she was with walking and how she would bump into things here and there. This always killed me! It breaks my heart to think people can easily hurt her feelings now without her even knowing. As a side effect of her brain surgery, she was later diagnosed with Cortal Basal Ganglionic Degeneration. Her brain was deteriorating before our eyes. Here was a healthy woman who worked out everyday, ate extremely healthy and was still so young.

Some would think being 3,000 miles away from a sick parent would be considered selfish. Trust me, I would lie awake in bed many nights telling myself I am a horrible person or contemplating leaving a great job to move back home to nothing knowing that there is nothing we can do to make her brain improve. She always said to me if us kids ever put her in a nursing home, she would disown us. I don’t think she ever imagined going into one under 70 years old.

It’s hard for me to visit her. I cry uncontrollably before I even walk through the door to see her. I can replay the last time I saw her in my head over and over again. She was watching TV in a little room with people almost twenty years older than her. They all seemed to be there in the flesh but their souls and personalities had got lost along the way. She looked at me quickly and looked away as if she didn’t recognize my face. She looked at me again and her eyes swelled up with tears and that’s where I lost it. They say when you aren’t around enough; people with her disease can start to lose memory of you. As much as I hated to see her cry, it let me know that she remembered who I was. I was her baby. My mom was still beautiful to me even in a wheelchair, gray roots, no makeup and her most perfect DDs somewhat deflated without the support of her beautiful lace bras I would put on as a child and stuff with toilet paper in hopes I would be blessed with them one day. (Side note: They never came, I got my dad’s A cups.) I wasn’t too prepared for what came next. I was talking to her about the current events in the news about the Boston Marathon bombings and she came back at me with a full sentence…a full sentence in complete stuttered, broken gibberish. She looked at me in the eyes with this look on her face as if she was waiting for me to answer her question or agree with her. It killed me. It killed me that she thought the words that were coming out of her mouth were a perfect sentence and the conversation we were having was completely normal like old times.

This brought me back to last December when I called her to wish her a Merry Christmas. My sister who was with her kept saying “Say Merry Christmas…I love you!” She never said it. She tried but it never came out. Sometimes when I am lonely or in the car coming home after a long day of work, I imagine a phone call to her in my head where she asks me how my day was and she ends it with “I love you and miss you a whole bunch.” I will never hear that again. At times it feels like I’ve already lost her and only feel this way because I will never get her back. I guess I can be pretty angry about everything, or I can accept life as it is. Que sera, sera: whatever will be, will be. That’s what she would tell me if she could. TC mark

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