We are caregivers - A mother's story about her young adult son who lives with paranoid schizophrenia

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Morning Zen Guest Blogger ~ Melanie Jimenez 
Writing the truth to help fight the stigma that surrounds the diagnosis and to help people better understand the illness. 

We Are Caregivers 
Often there isn’t a lot said about the caregivers for someone with schizophrenia. We tend to show up in stories written by the media after a tragedy happens and then we are put under a microscope for people to determine if we have done the right thing in raising, caring for, and protecting our loved ones. Often the judgment comes down on us from those who don’t have the first clue what it’s like to be a caregiver. It’s so easy for them to say what they would have done differently if THEY were the ones deciding the fate of our loved ones with schizophrenia. It’s so easy for them yet it is one of our most difficult jobs and one that we pour our heart and soul into daily.

To begin with and most importantly there is love. We, as caregivers, love our person with schizophrenia with our whole hearts. If we are parents to someone with schizophrenia there is also an even tighter bond because our child was created by us, born to us, and lovingly raised by us. We have ALL given pieces of ourselves, sacrificed our own way of life for them and have spent many late nights worrying and praying. Behind the closed doors of our homes or a therapist’s office or a psychiatrist’s office we put our heads together to decide what is best for our loved one and sometimes our choices work but more often we are less than successful. You see, it’s isn’t easy caring for our loved one. Besides making normal life decisions, we are also forced pretty often to decide FOR our loved ones what is best for them. Sometimes, though, we fail in our choices and find ourselves in a quiet room, our heads in our hands, defeated. The beautiful thing about we caregivers, though, is that we never give up. 

Never.

Then there is tenacity. We caregivers are fighters to the bitter end. We fight for proper medical care, humane treatment and respect for our loved ones. We are advocates of the strongest kind and we are a force to be reckoned with. Often you will find us fighting for rights to see our loved ones locked behind hospital doors hoping for a chance to talk to their doctors and offer insight that no one has but us. We are found on trails and surface streets wearing our t-shirt in support of our cause while we walk, run and bike for miles to raise money for research. We sit quietly at our desks writing a check or two to our favorite organization that supports and educates others about schizophrenia and other mental illnesses. In the smallest, yet biggest way, our sometimes quiet voices raise up in earnest to defend our loved ones to family members and friends who just don’t seem to get it. We are fighters, we are advocates, we are the voice of our loved one with schizophrenia. 

In the end, we are human. We are flawed and we make mistakes. In the end, after we have given our heart and soul, sometimes we aren’t successful in our fight. In the end, love does not always conquer all. In the end though we did everything we could and we did it with love, with intelligence, with experience and with a fight rivaling that of a mother bear defending her cubs against the predators that threaten their life. 

We are caregivers. We are mothers, fathers, wives and husbands. We are children fighting to understand our parent with schizophrenia and we are friends accepting our loved one for exactly who they are. We are caregivers, people from around the world giving all we have to love, protect and care for our loved one with schizophrenia. We are caregivers and we will be here to the bitter end even when society has walked away condemning our loved ones for simply being human. 

We are caregivers and we are strong. Do not underestimate us. We are here and we are not giving up.

melanieMelanie Jimenez is the creator of the blog Understanding Schizophrenia. She started the blog to help bring awareness to the realities of schizophrenia. "I wanted to be sure that people got a perspective other than the one that the media portrays. My blog shows the candid and raw point of view of what it's like for me raising, living with, and loving my son who has paranoid schizophrenia." You can read more of her written essays here.

 

Comments

Martha Kaufman's avatar

Martha Kaufman

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I so appreciate what you have written Melanie. It is exhausting on a daily basis to fight, hope, face disappointment in getting the help we need, and then gear back up to hope again so we can keep fighting. If we are really really lucky, we have friends that understand and who will be with us, in court, in the middle of the night - people we know understand. Thank you for a wonderful description of love and determination. Martha
Melissa's avatar

Melissa

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Beautifully written, Melanie. I too am the mother of a child with severe mental illness, he is 13 and does not have a concrete diagnosis although schizophrenia has not been ruled out. I gain such comfort and strength in the shared experience of others walking this path, the journey of raising a child with a somewhat "invisible" illness. I accept that people do not understand. I could not have understood either until the experience was my own. I feel so deeply for both of my children, one is having his own very challenging experience as younger sibling of a severely mentally ill child (my older son is also on the Autism spectrum, he is significantly developmentally and cognitively delayed.) We did not choose our roles but I believe and hope that we are better, more thoughtful, impactful people who make the choice to not isolate ourselves and our families in a society that can often make us feel alone. Thank you for sharing your story and thank you for being a beautiful, wonderful MOM!
George Patrin's avatar

George Patrin

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Beautiful and poignant. I am a Pediatrician who valiantly worked to understand what 'my' parents were going through as I searched for reasons, diagnoses, to explain the behaviors we saw. Whether autism or schizophrenia, bipolar or suicidal, caregiver parents are an amazing group of survivors who show and give unconditional love, if we'd only show more support and compassion, as no can ever fully 'understand' how you feel unless they are living it themselves. I will continue to advocate for you in my retirement, as well as for my colleagues who 'get it,' still practicing, to give the best chance at life for those born with challenging disorders, like schizophrenia. Unfortunately, I am now in 'the club,' having lost my 21 year old son to suicide before a proper diagnosis was made or an effective treatment-safety plan was put in place. Keep on keeping on moms and dads. May you find assistance in the world outside your four walls so you can 'take a knee' on occasion to gather your energy for the 'the next round.'
Susan Getka's avatar

Susan Getka

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Thanks for sharing- wonderful & powerful. I'm advocating for my brother. It's a lonely, exhausting & difficult job but people like you give that extra push to keep going. Bless you & many thanks.
Amy Kerr's avatar

Amy Kerr

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Thank you, beautifully put. I advocate for my 18 yr old son. Scizophrenia and anosognosia, the everyday battle is tough but I thank the Lord he gave him to me. After all there are many parents who not only dont recognize they are in denial. Nice to know we are not alone.

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