A Writing Rose

Santuary for Women

Mental Illness and the Chains of Caregiving

Hi Gals,

In the ensuing months, I am fixing up my house and putting it on the market. If/when it sells, I plan on going into hiding. My adult children will be able to access me via social media and the phone. I need to pull the rug out from under several of my adult offspring’s feet and force them to live independently. They have had several years warning to figure out a game plan for independent living. Most of them will be just fine.

Which brings me to my special needs adult kiddo who has a mental illness. I’m scared. Afraid of what this child will do to their person or property. I forced therapy and medical help prior to this child’s eighteenth birthday. But the HIPPA laws bound my hands after that ‘of-age’ birthday.

In a sense those laws that bound my hands from helping my kiddo get help, also put me in a prison with chains so heavy sometimes I wonder if I can make it another step.

This past year has at times been unbearable. Over the new year, my child had an episode that lasted four days. Four days of sheer hell. I was so discouraged about the lack of resources available to me, the damage done to my house, and what I call walking around on eggshells syndrome. However the silver lining in this story was the finding of NAMI.

I went to the national site and found my state listing. From the state site, I found a local support group and classes for loved ones of the mentally ill. I called the lady in charge and told her my story. When she heard how bad it is at home during the episodes, she bumped me off the waiting list and into the class. Finally some hope for me.

I’m hoping the class series will give me a game plan and empowerment within the medical system to find some help for my kid. But the bottom line is that my kid refuses to seek any kind of help. In this adult child’s mind, there is no problem. Now after almost ten years of battling the mental illness post that eighteenth birthday, the medical establishment, and life, I’m going to free myself from the jail of main caregiver.

I can’t do it anymore. I am beyond spent. There is nothing left in me to give.

I feel horribly guilty about leaving my special needs adult offspring to figure out medical treatment and a living situation. Frequently I think I might end up planning a funeral as this child has almost succeeded in several suicide attempts. I know I can’t stop that either. That lesson I learned years ago.

Right now the May 1, self-imposed deadline to have my house ready for market seems like  a century away. It is mid-January and the kiddo with bipolar and schizophrenia won’t even talk to me. Jail. I hate it. After I leave, my hopes are that this child will seek treatment or put someone in charge of the medical caregiving. I doubt either will happen. Is it my problem? Yes, it will always be my problem. As long as my special needs kiddo and I are on the planet, it will be my problem. I have incurable mom disease. I’m chosing to put the responsiblity and consequences into my kiddo’s lap since I’m spent and nothing I have tried has worked.

Ultimately this is my decision, one that I have struggled with for a long time. As a writer, I’ve decided to make mental illness part of my “platform”. If Miss America can have a platform, so can I. In a sense, I’m coming out of the closet. My voice will not make much of a difference, but maybe it will help someone else coming behind me to know that they are not alone.

The local NAMI lady told me there are no wrong ways of handling mental illness. She told me my plan of sacrificing everything and going into hiding was necessary for my self-preservation and that it was RIGHT.

It still doesn’t take away my fear or the deep internal anguish that I feel. But now it’s about choices. My choice is to cause change for myself. I hope that in turn helps my special needs kid to get help. Nothing else has worked and this might not either. Who knows.

I’ll be posting on mental illness a lot. Someone out there is walking in my shoes and needs to know there is help and hope. Mostly they need to know they are not alone. I will give updates on the classes I’m taking and share what I learn. Maybe it will help someone else.

For now, I’m the mother of a mentally ill adult child who wonders if this is the right decision. I know some of you are struggling with the same thing. Hang in there. I have no answers, only the experience of living through the hell. Some how, some way, we make it. Some days getting up is a victory. Patching another piece of broken wall is a victory. Finding NAMI is a victory.

Hope. Pray. Search out answers. It never ends.



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