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. Patty's avatar
    Patty
    | Permalink
    Hi, my name is Patty and I am a caregiver for my Mom, who is 89, soon to be 90, yrs young who needs full-time daily care, and also for my nephew who is 19 yrs old with Autism and now diagnosed with Schizophrenia. He has lived with my for the past 4 years since his mom, my sister, passed away from Breast Cancer. When he came to me, he was on a psychotic medication and was functional. With reminders and pre-preparations, he could function, go to school, help out at home, and maintain his hygiene to some degree, although he has an intense focus/pre-occupation with video games, their music, & porn (of all things). I am a single mom myself as his mom was, and I still have one child at home who is also 19 yrs old. This has put such a strain on my personal family as well as with my siblings and I can't seem to even get them to help out with him or my mom, like take him/her to lunch, or help work with him at home to learn some of the general life skills he needs, but they have lots of advice for me on what I should do:-{. When he (and his sister) came to live with me in 2011, I had just lost my job due to the economic downturn in 2010 and haven't been able to get back to work due to the needs of my mom and my nephew. Well, needless to say, things have spiraled downhill fast, to the point where he doesn't want to take medications, and won't even when I remind him, he talks to his hallucinations or fantasy characters from his games, paces vigorously when he feels no one is watching, and just yesterday, because he didn't want to get dressed and take his meds, walked out my front door and it took (us with the help of the police) two hours to find him! I was worried, scared for him, and saddened that its led to this. I have been unsuccessful in getting ANY assistance with or for him. Every office I apply for assistance or benefits for him gets declined. His mother set up a trust for him and they won't even help. I feel like I'm drowning in all the red tape and finger pointing and just plain "stupidness" (lol) that I'm running into just trying to get him some assistance. I live in Washington State, and currently right now, the officers took him to a respite/recovery facility, which it was a true fight just to get them to take him in and assess him. The RN there asked him did he want to go home and he supposedly said yes, he was ready to go even though he had just told the officers and my daughters he didn't want to go home with us at all nor take medications. We talked to the Supervisor there and she said "no, he'll stay here for the weekend and we'll try to assess him and see what services are available to him before we send him home." That was the first ray of any hope I've had and I pray they can get something in place before the discharge him. My nephew has a high IQ, which has been the reason for all the denials for services yet his adaptive functioning and executive thinking are very very low, yet I'm being told he doesn't meet their criteria for services. I just don't know what to do anymore or how to help him. If anyone has any suggestions, please let me know :-}. I'm also a full-time student struggling to stay in school (for the 3rd time) so I can go back to work as well. How do you help someone who thinks they're "normal" or "fine" even when the psychologist, doctors, therapist, and other family members try to tell them they're not? And just like the facility he's at now, they ask HIM what he wants and he doesn't even understand what they're asking him! I am his legal guardian, court appointed, and yet it is such a struggle. Someone, please help me, lol, or I may be the next one to just "walk off", lol. I', currently trying to get him seen by a psychiatrist for medication evaluation and treatment and am taking him every week to the University of Washington Autism Center for Behavioral Therapy with a psychologist, but that doesn't seem to be working. How do I get him to understand that I love him and want the best for him and yet he needs help? He's getting scary to be around and I feel just terrible when people in the community look at him funny etc. yet I don't want to just give up and drop him off in a state run facility because I feel that would be worse for him and his chances of improving and getting back on track would be nill.
  2. Brenda's avatar
    Brenda
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    My son has been diagnosed with schizoaffective he is 23.It sounds like we are all pretty much going through the same thing. We are blessed to be here in Tx with a physic clinic altho the first psychiatrist did nothing for him. After 8 months of her he was hospitalized for the first time, and that was a joke he came out the same way he went in. Now a counslor and a Theripst comes to our apt once a week. But my son told them both he is not going to take is meds and he doesn't want to talk to them or the Doctor anymore. And like it seems everyone was saying how their child is a master manipulator so is my son. If anyone knows what or how to make him take his meds please let me know. Good luck and God bless
  3. Wanda allred's avatar
    Wanda allred
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    Drove five hours to let my 36 yr old schizophrenic son into his apartment after he was transported back to his rural community after being released from a psychiatric hospital he had been admitted to two months ago after stopping his meds. He is confused and paranoid and doesn't know what is real.I
    Have to go back to work five hours away. The county has him on a wait list for a foster home. It is heart wrenching, I feel like I may never see him alive again.
  4. Paul's avatar
    Paul
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    I am the primary caregiver for my 29 year old son who suffers from paranoid schizophrenia. On March 18, 2016, he made 4 deep cuts across his wrists. I heard screaming from the next room and cautiously came in. There were two pools of blood under his desk where his hands were hidden. Fortunately I saw a pool of blood on the desk. (The room was dark as he never wants lights on because of the voices)
    The medics and police arrived in time and he was Baker Acted into a downtown hospital in Jacksonville, FL.
    5 days later we received a call saying he was discharged from the hospital. My wife works full time and I could not make the 2 hour drive immediately. I was stunned that someone with 21 stitches in his wrists was forced out of the hospital and the head of Psychiatry said as far as he could see, N. was OK. I have a DRAFT letter to go to the hospital and doctor who released him. I explained he was still a danger to himself and to others. An ambulance dropped him off at home around 10PM that night. Just one event in a caregivers life. My son was diagnosed at 15 and is not 29. Someone who has actually tried to commit suicide is far more likely to do it again. You can only imagine what this does to the caregiver. Paul
  5. Lexi's avatar
    Lexi
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    MOMS - Please come follow my blog! I am trying to start a campaign to get more people interested in helping children with mental illnesses. We need raise awareness. We need support. We need the rules re-written when it comes to KNOWING OUR CHILDREN and knowing when they need to be admitted, and when they need true help.
    My brother was recently committed by police on a 5250 hold, and treated for Schizophrenia and Bipolar. It took not once but TWICE at the hospital on a hold for the mental ward to recognize that he needed HELP even though he was begging and pleading them to HELP HIM.
    He is (like many comments I just read) a master manipulator. No one believes the struggle we go through.
    We have to UNITE and we have to stand TOGETHER as a family and raise awareness for this and BE HEARD.
    PLEASE PLEASE PLEASE email me @ mimomsunite@gmail.com
    and Please don't be discouraged by the blog, I just started it this morning.
    PLEASE lets share our stories and figure something out!!

    mimoms.blogspot.com

    <3
  6. Sherry's avatar
    Sherry
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    My 42 yr old son has had schizophrenia since 16. Eldest of 7 children. Been hospitalized countless times with group homes as well. Medicated with Clozapine for 12 years. Still doesn't clear voices. I'm an R.N. It doesn't get easier, but you can survive this. You must not let mental illness steal your own life too. It took years for my husband and I to have a team effort towards him. It often falls on one person to drive the dark streets and sit in the padded treatment rooms. I have plans to write our story. It is an incredible tribute of courage and tenacity, on all our parts. I love my son more tonight than I did the day he was born.
  7. Rio's avatar
    Rio
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    My daughter is 17 and has severe paranoid schizophrenia. (Along with my 15 year old son who is bi polar) the job is endless. She can never sleep because of the voices and nightmares. And he can never sleep because of the mania (a symptom of bi polar.) not only can neither of them sleep, they can't be up alone. If they're up, I'm up because I can't trust them. The last time I went to bed I woke up to my daughter trying to climb up to the nieghbors house and spy on them because she thinks they're plotting to kill her and they're sending their 8 year old son to spy on her. They're both been hospitalized many times and meds are almost useless. The episodes of their illnesses can last days or weeks. There is almost never a break in the storm. And even though I am about ready to rip my hair out, at the end of the day, I love them. Because they're my kids. They had this illness since before they came out of my stomach. And think about it... How would u react if u heard voices every day telling you people are watching u or if u had sever mood swings every day? Id be freaking out too. And I would want help love and understating too. I love them and I will continue to fight till I'm dead and gone ❤️❤️❤️
  8. cheryl's avatar
    cheryl
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    My son was diagnosed January 2015 with paranoid schizophrenia he is 29 and i need help badly he keeps wanting not to take his meds this is the 4th time he's been put on something different to take, he is on abilify and not wanting to take it he then gives me a lecture of how this medicine will kill him and would i rather he stay on it or see him dead! And the he calls me evil cause i want him to stay on his meds! I can't take it anymore my only other support is my daughter who thinks its okay for him to be off his meds (i should let him do his thing) she says; and they both been reading up on schizophrenia so now they are experts, well if that be the case why when he plays doctor with himself does he go back to hearing voices and looks panicky and lies thru his teeth to the doctor about how he is doing! The rest of my family is afraid of him so i have no support at all and I am 56 yrs old and fighting a disability case for myself due to my health and PTSD that i suffer with, and also trying to get him on SSI, he won't go out of the house and he won't try to work, he has been hospitalized twice both times under a Mental Hygiene Order that i filed on him so that he would not walk out like he did twice when he volunteered to go in. I been researching till i am blue in the face and cannot get the help that he really needs, i love him but enough is enough, i need to find a group home or something for him and i cant seem to find one in this area that i live. I have not called NAMI but was told to go ahead and call them but if there is nothing in this area then what do i do, my older daughter is supporting us both right now but my god how long does it take to get actual help! So that we can all breath and know that he's going to be okay!i have nightmares of waking up finding him gone, he has dreams of the end of the world. Can somebody please tell me that there is hope and what and who do i need to speak with to get the proper help! Now also we are poor we have medicaid for insurance. I need tomfind a group home that will help him get on his feet again or a caseworker even to come on a daily basis and a councilor for him tomtalk with, he has no friends at all. I'm thinking if i can get him more involved with life again it will help him a great deal. At least I hope so. I love my son he is my last born out of 4 children and my best friend as well but i am at my wits end inntrying tonfind help here for him. Hear is in the State of West Virginia which our mental health org, really does not provide much help at all. He heeds help!
  9. Heather's avatar
    Heather
    | Permalink
    My son was diagnosed with paranoid schizophrenia just this past February, although I knew for some time now he had a mental illness. He is now 19 about to be 20, it's been a nightmare trying to get him to see someone for an evaluation. I called every where, hospitals, police, mental health, and searched the internet high and low for some sort of direction. In February his psychosis was so severe head grab his head with both hands screaming " I just want to blow my brains out " it was horrifying to watch. Prior to this he could somewhat control it in front of medical professionals, he was what I'd call a master manipulator. I know it sounds horrible but I was so relieved when he had this breakdown, finally someone will see what we were going through, someone would BELIEVE me so I could get him some help. Its been several months since then, lots of tears, stress, feeling helpless thinking he will forever be like this and I will be caring for an adult child for the rest of my life. Believe it or not he's gotten better, we just recently took him off the depakote he seems to focus better without it but he still needs the zyprexa, otherwise it sends him back to severe paranoia, seeing things, hearing voices, thinks everyone is out to get him. He may not be the the so called "normal" but I am thankful for the progress he's made. So please don't give up, don't stop showing them love, they don't know what they are doing or saying and it's not THIER fault. The other day my son told me he was proud of me for being such a good mom to him. I cried, not bc I was happy but bc I thought it was all my fault, I did something to cause his mental illness and he thanking me.
  10. Beth's avatar
    Beth
    | Permalink
    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
  11. 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
  12. Holly Stevens's avatar
    Holly Stevens
    | Permalink
    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?
  13. Scott's avatar
    Scott
    | Permalink
    Here is a link to the NAMI support page - http://www.nami.org/Find-Support
  14. Vanessa's avatar
    Vanessa
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    Diane, NAMI hears you. Find your local organization.
  15. 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!
  16. Leslie Walsh's avatar
    Leslie Walsh
    | Permalink
    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.
  17. Veronica's avatar
    Veronica
    | Permalink
    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?
  18. 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
  19. 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?
  20. 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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