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

  1. Beth's avatar
    Beth
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    I too have a son that was diagnosed with paranoid schizophrenia. It has been roughly 12 years now. I love and protected him so much. People can be very cruel. I love my so and I will do anything possible to get him somewhat back on track. Its been a long haul but Ill never give up on him because of his Mental Illness
  2. Linda's avatar
    Linda
    | Permalink
    To: Sally dated april 7, 2015. You just told my story. I'm doing this alone. No resources, no doctor as of yet. My son calls the police on me if things don't go his way. Berates me, says the most awful things to me, is jealous, manipulative, forceful, domineering, frightened out of his wits and it's 24/7 !!! Iv'e eaten 20blbs back on my frame and want to crawl in a hole and die!!! He's not human at the moment. Can't go outside, thinks people are going to kill him and has no concept of time, deadlines or personal care. Left to his own devices he is on the streets, literally. He's had to see people be stabbed and mistreated and wake up on the pavement. He has no friends, at 29 years old, has not one friend. I'm at a loss as to why the powers that be, and they are clamping down on us normal citizens, won't take him in for some sort of evaluation. He needs a residential program. WHY NO HELP?! We are poor. People will see to it a dog in a sports shirt gets more help than our people! Justice please, compassion and some help. Why are street drugs so popular? Why do people drink themselves to death? NO COMPASSION IN THE MEDICAL COMMUNITY! The Feds are taking away all manner of basic meds to assist the living and grandma now has to go to the streets to get relief...When drugs are outlawed, only outlaws will have drugs...shame on you USA. SHAME
  3. Holly Stevens's avatar
    Holly Stevens
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    My son is nineteen and newly diagnosed with paranoid schizophrenia, although I've known for a while. I have researched to the end of the internet and back, yet nothing I seem to do helps. We are trying a new medication tonight and I pray this one will help. The last one didn't. I feel like I am losing my mind because I am with him all of the time. It's hard to explain but I have to stay with him or he will go back to his old ways. I've never taken medicine for depression but I feel so depressed at times that I just sit and cry. And then I feel better, until the next meltdown. I felt like I wrote Morning Zen. I cried from beginning to end. My family, who has always been there for me, doesn't reach out anymore and I am so angry with them. How could they leave me now?
  4. Scott's avatar
    Scott
    | Permalink
    Here is a link to the NAMI support page - http://www.nami.org/Find-Support
  5. Vanessa's avatar
    Vanessa
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    Diane, NAMI hears you. Find your local organization.
  6. Sally's avatar
    Sally
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    My son has schizophrenia and is 32 years old. I have fought and fought for years to get him the best help. My son is very mean and rude to me. He calls me terrible names, cruses at me, manipulates me at every opportunity. I am exhausted from it all. I am 62 years old. How can I continue to allow myself to be emotionally abused just because he is labeled mentally ill. I am so tired!
  7. Leslie Walsh's avatar
    Leslie Walsh
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    I just had to get my son committed again. I have been caring for him on my own since he was sixteen, and he is thirty-two. I feel so much grief and have had so little support from family, and none from his father. I feel like I tried to be a good caregiver and failed. I think I suffered burnout. He has been hospitalized before, and I never felt like this until now.
  8. Veronica's avatar
    Veronica
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    I'm desperate to my 19 year old daughter help. She was away at college & suffered a breakdown during her second semester. She was hospitalized for 7 days & has refused help for the last few months. When she does share her delusions with me, it takes everything in me not to cry. She's also now stalking a man that she believes got her pregnant telepathically. I'm afraid she may end up in jail. She's getting worse by the second. I'm terrified! How can I help her when she refuses to see a doctor?
  9. Debra MAYNE's avatar
    Debra MAYNE
    | Permalink
    I also have a son age 38 who was diagnosed an has this disease of schizophrenia.its so hRd he was going GREAT an now he will not take his medicine.my other sons wife is scared of him.he was staying with his older brother but we are now taking him back to FLORIDA with us. Just now learning myself ABOUT your groups.I need to KNOW all I can
  10. Diane's avatar
    Diane
    | Permalink
    I love my son, who is mentally ill., but want to change the laws on forming and getting him the right help. Who,s out there and hears me?
  11. debra's avatar
    debra
    | Permalink
    I just ate a piece of pie and a bowl of icecream....I don't know why, because I will have a stomach ache. I started experiencing problems since my son was diagnosed with schizophrenia at 19.

    He's 26 now, and it is a very, very lonely life and I will never know how many times my heart has ached for him.....many, many nights though out the years.

    My son is lucky - he has two brothers who live with him and love him,keep him busy. I'm around the corner. I barely can keep up with the day to day monitoring (bringing groceries, making food to "drop by", ect..).

    I have found for us the most important warning signs of impending psychosis shows in my son's eyes....I then know he needs help.

    I take care of my 80 year old parents; between all three it is a full-time job. It is a cruel world. Sometimes I keep so busy I find myself not able to do anything for a day or two....then I bounce back....it is so, so hard. But we love him, what else do you do if you love someone?

    I don't have much in the way of resources, but I do know I couldn't live with myself if I didn't do what feels right. It is a hard thing to have a child with schizophrenia.
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