Are you the parent of a child, adolescent, or adult child with severe mental illness? How do you feel right now? Tired? Lonely? Discouraged? Or even stronger? Some parents say that they are struggling every single day of their lives with the reality that their child, teen, or adult child is suffering from both their own illness and stigma. Other parents say they are not as discouraged as they were before they found out what their child actually struggled with. No matter how you have chosen to view your situation, I’m sure you can relate to Melanie Jimenez.
Melanie is the mother of an adult son with paranoid schizophrenia. She writes her own blog titled Understanding Schizophrenia and hosts her own facebook page for readers, parents, and families with similar struggles as her own. Paranoid schizophrenia is a sub-type of schizophrenia characterized by delusions (false beliefs that are held to be true despite evidence to the contrary) and hallucinations (incorrect perceptions and sensory processes such as hearing or seeing things).
Schizophrenia, no matter what type the individual may have, is a very difficult condition to live with. It’s even more difficult for a parent or caregiver to deal with because understanding the disorder from the “outside” takes so much knowledge, patience, and love. Even more difficult for many caregivers or parents is finding medication and sometimes finding the right combination of medications to help a loved one. Listen to what Melanie had to say about this in a recent post on her blog:
So, last night we were back to square one. A VERY sedated Thomas greeted me at his bedroom door when I came to say good night and my heart broke seeing him like that. That is one aspect of the treatment of schizophrenia I will never get used to. We said good night and we all went to bed.
Note: In this article, Melanie mentions “prodromal bipolar symptoms.” In case you aren’t familiar with this terminology, prodromal is a medical term used to explain early symptoms that might indicate the start of a disorder. Prodromal symptoms of bipolar disorder might include some incidents of manic behaviors.
Lets read about Melanie’s story:
It happened on a beautiful Spring day in 2012. I had been shopping and came home to drop things off. As I walked in the back door something didn’t feel right, the house was dark and silent. I came around the corner and found my teenage son, Thomas, standing in the middle of the room wide-eyed and shaking. He had closed all of the curtains in the house and we stood there in the low light and I listened as he told me there was someone outside trying to kill him. I went to the window and looked outside. There was no one there so I guided him over to the couch and sat down with him and hugged him. I tried to calm him but as the minutes wore into hours and then days, his fear didn’t abate and I felt completely powerless to help him. What I didn’t know then was that was his first psychotic break.
At the next therapy session I asked his therapist,
“What if this happens again?”
His response was, “If it happens again and you can’t pull him out of it then we’ll do something.”
“Can’t pull him out of it? Are you kidding me? If I can’t pull him out of it then where does he go in his mind and will I be able to bring him back to me?” I screamed to myself inside my head. I was scared to death and felt completely unequipped to help Thomas through another episode, especially if he had one worse than the first.
Not long after that Thomas’s therapist told me that he believed that Thomas had “prodromal bipolar disorder”. It was an understandable direction to look toward given the family history of bipolar disorder. The problem was the symptoms of bipolar disorder didn’t match up with the kid I lived with. I knew it well and what Thomas was displaying were not bipolar symptoms. What I did do was latch onto the word “prodromal” and I Googled it repeatedly, each time finding the word “prodromal” attached to schizophrenia. The more I read, the more I realized that this was what was wrong with Thomas.
It took two hospitalizations before we got the diagnosis I had been sure about for months. Thomas was suffering from acute paranoid schizophrenia. As I sat with the doctors towards the end of his second hospitalization I was given a grave warning,
“Your son’s delusions are very fixed. They are also tightly layered and will be nearly impossible to penetrate. At the rate your son is going, by 23, he will have had run-ins with law enforcement and may find himself in jail. He needs serious treatment and right now he’s refusing it.”
I was terrified. I knew enough about schizophrenia to know that without treatment it could go to a very bad place. I wanted Thomas to agree to get help but his inability to recognize that he was sick stood in the way. So he checked himself out of the hospital on a very low dose of Risperdal and we came home only to discover there were no psychiatrists available in our area. It took seven weeks but we were finally fitted into a local psychiatric nurse practitioner’s practice and with gentle encouragement and by educating Thomas about his illness, he got Thomas to agree to a full trial of medications.
Sadly, though, after the diagnosis, we said goodbye to the dreams we had for his future. It wasn’t that they all died the day he received his diagnosis, but there was still a loss he and I both incurred. The things he wanted were either denied or put on the back burner and I said goodbye to the young man I thought he would be. I began the grieving process that comes along with being the parent of a child with schizophrenia. I watched as he slowly disappeared into the illness but I didn’t stop hoping for better days.
Though few and far between (for the first 2 years after his diagnosis), the “better days” finally began adding up as we began to find the right combination of medications. It has been only recently that we have seen significant improvement but we have learned that true stability is fleeting. With just weeks of good times behind him, Thomas has begun to have setbacks. That is the nature of schizophrenia, two steps forward, one step back and because of that we have had to readjust his medications and more importantly our expectations.
As we sideline lofty expectations of a remission currently beyond our grasp, in its place we find a way to hold onto hope. Like a lantern in the darkness, hope is our only reprieve. With his strength that awes me constantly and with my determination to ensure more better days, we gather around hope’s light and hold on to it. In its glow we find a tentative acceptance of schizophrenia’s presence in our lives and in doing so we find some peace that will anchor us in the storms.
My name is Melanie Jimenez and I am a mom and caregiver for my 19 year old son Thomas who has paranoid schizophrenia. Not long after he was diagnosed and after learning about the illness and also feeling the stigma around it, I made a New Year’s resolution to shed light on what it’s like to live with and love someone living with schizophrenia. On May 1, 2013, the beginning of mental illness awareness month, I began a blog about my experiences as a caregiver and my view of Thomas’s illness through my eyes. Since then I have not looked back, lovingly and strongly accepting my new role as caregiver and candidly writing about it in the hopes that eventually the stigma around schizophrenia will change. I am honored to be Thomas’s mom, I am in awe of his strength and tenacity, and because of that I dedicate my life to him and to changing people’s view of schizophrenia.
Melanie, thank you so much for your touching story and your insight as a parent. Thank you for sharing your story with all of us. I often try to put myself in a parent’s shoes to see how I would feel if I were asked to share my story with millions of other people. I’m not sure I would have the courage to do so. You are modeling bravery.
I wish you all the best.
Stay tuned for tomorrow’s personal story contribution. I’ll discuss how to protect yourself from unethical behaviors within the mental health field.