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

21 Comments | Posted

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. Valerie's avatar
    Valerie
    | Permalink
    My 21 year old son was diagnosed 4 years ago with schizophrenia and psychotic depression. I couldn't accept it for at least 3 years despite the nearly constant hospitalizations, meds and med changes, and his incredibly different personality. Now he has been on a new med regimen since October 2015 at his last hospitalization where he was almost dead with catatonia, and mania brought on by a trial of celexa for depression. He has been stable for almost 3 months, the most stability ever for th last 4 years. I spend each day being grateful for this stability, and taking one day at a time also caring for my other 5 children and being a single mom. I worry so much about the future...his therapist says to live each day optimistically, but plan for the future pessimistically. I am lucky he takes his meds and sees his therapist twice a week and can live at home. He absolutely hated group homes and residential stays. Its so so hard.
  2. Lois's avatar
    Lois
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    My son is almost 40, I have read alot of the comments.Some of the stories very much like mine.But I must say as hard as it is, I have never been ashamed felt less than or any of the things some may have felt.My son also has schizophrenia.It started at 16 17 but I was sure this was temp,a form of denial or perhaps a coping mechanism.But within the first 2 years 28 admissions due to a not so great system.My son will be 39 so to say the least I must say I have seen far more injustice than I could Have ever imagined.I felt very alone as my family didn't understand.So he hasn't seen any of them in over 20 years.I have and will continue for as long as I'm alive to realize that at times when I had to fight the system the Doctors the facility's it was all worth it.As now he is where he needed to be for many years.Alot of people with this illness need to be where there is a full staff Doctors nurse's, and a well structured enviorment.Alot also have a dual diagnois which goes hand and hand with this because before the Doctors ect get them on the right meds they DO NOT LIKE what they are feeling so try to self medicate.Which only makes things worse.I could tell hair raising circumstances and could have just died knowing how unfair unjust and horrifying a justice system is.But unless ask or needed I try not to go there as that was 10 years ago.And finally the last 3 years I became so determined to not let ANYONE AT ANYTIME place my son in a group home an A.L.F. Assisted living faculity, as after 5 different places it would not work then there wasn't going to be another chance for him to end up in ICU beat up and running the streets.Michael has had 3 stays at the State hosp.were he did wonderful he is now in a full staff home type facility which is more like a nursing home setting with just mental illness being primary focus.They have things for them to do I get to pick him up for up to a week for home visits.They treat him with respect at ALL times! They are wonderful.I go every say or Sunday to go out for lunch with him or Wal-Mart.For the folks that don't have family,the staff cnas take a group every weekend.He makes all kinds of art which he brings home to his nephew,which he adores.He knows God has a plan and purpose for every human being alive.He's humble grateful,loving kind and I am so very proud of my Son.Those that know him and took the chance to not form stigma all love him.We stay focused on those things which are important.Friends and enjoying every moment we have together.In 20 years never one attempt to hurt anyone.He is my true inspiration.He's my Son who I will always be there for.And I thank God I never turned my back or quit fighting for.God Bless everyone who supports a family member with any illness☺💓
  3. Irene's avatar
    Irene
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    I have been reading all of your comments and I feel for you all. The common thread is we are all caregivers to a family member (son/daughter with a severe mental illness such as schizophrenia. It is a hard, difficult road to travel. I sometimes feel very alone in that I don't know of anyone else who has a severe illness such as what my son has - schizophrenia. But reading your threads I know that you are out there going through similar experiences. It is hard to see any light at the end of the tunnel when you see medications having very minimal effect on his illness. My son was showing symptoms at least by age 15 and he is almost 21 now. He just came home from a long hospital stay of a year in total with a brief respite of a week in between before being hospitalized again. He has been out of the hospital for less then two months and just went back in last night. I am sad, frustrated at how it is a 'robber and stealer' of my son in the prime of his liife. He is a handsome young man but insists in shaving his head bald and ends up with gouges, nicks and cuts on his head. His beautiful white teeth he used to have is stained yellow and brown with nicotine. My beautiful boy as a baby and child with blonde hair and blue eyes is now a physchotic lunatic who has no insight into his illness at all! Is this what my child was born for? To have delusions, fixed false beliefs, anger, agitation and constantly verbally abuses me, bullies my husband and would like nothing better then to get ahold do cocaine so he can mess himself up more. He almost died in March 2014 of an overdose. We have cut off his money supply to keep him away from it, but it is not easy. He has absolutely no insight into the dangers of drugs and he thinks that it actually calms him down! He calls it as just having harmless fun. Last night he was picked up by police as he was wandering around stark naked in the cold night. He thought he didn't need his clothes as he was going to be abducted by aliens. The list goes on and on... I am thinking of quitting my part-time job to care for him as he cannot and should not be left alone at home. His older brother will be moving once he is done his course at college and joining his girlfriend who just got a job as a nurse in another province. He was around to make sure he ate during the day etc., but now that support will be gone soon. I cannot take the stress of my job and looking after him too. My husband is supportive and he is the main bread-winner. This is really a cruel disease and I despise it. I don't despise my son; as a mother the love is deeply rooted into my fabric of being. It is not going to be a easy road ahead of us. It is exhausting and I feel burned-out, but we have to keep pressing forward in the hopes that one day his mind will clear. Good luck to all of you and God bless...
  4. Denise's avatar
    Denise
    | Permalink
    Our 24 year old son had his first psychotic break last January. We barely slept, worrying that he would die frozen on the streets. We did get some amazing help. First, the county crisis team visited him, he did a good job acting normal so they couldn't force him into the hospital, but counseled us what to do and not do....like not allow him in the house if he was verbally or physically abusive. We used the employee assistance plan from work, the social worker told us to get him in the hospital and helped us figure out how. I called NAMI, their top two people walked me through many challenges and confirmed we were not alone and that many ( such of all of you) have had these experiences. Finally we were able to get a court order and he was ordered into treatment. They started out on the second gen meds but they did not kick the psychosis, finally ended up on haldol injections every other week. Do not be afraid of haldol for 3-6 months, it kicks the psychosis. We then went on suicide watch for months while he went through post psychotic depression. He slept 18 hrs a day. Gradually improved, but required us to be very patient and always positive. Eventually on Abilify, reunited with friends, got a job, if you met him you wouldn't know he was sick, you probably would just think he was an underachiever and not always a clear thinker. So far so good. But everything I read says there are no guarantees.

    Some things I learned that help. Go to Nami meetings and take the family class. Safely provoke if you need to to be able to get them the help they need, they are suffering and you should help shorten it sync way you can. Once being treated, do any thing that "cools the brain down". ....no tv, music, arguments, lectures, etc.... Lots on "being there", read books out loud, get people to write letters and send texts, visits from kind and mellow people, tell them you will always be there, tell them you will help them rebuild their life and that you understand it may be a different life than either or you expected but that it can still be a good life, tell them how much you need them in your life, walks, simple games like war or hangman or coloring. The Feds give each state money and requirements to treat the severely mentally I'll, find out who the state gives the money to and let them know you want the services your loved one is entitled to...a caseworker, an "individual plan of service", assertive community treatment (act), etc... Read "schizophrenia for Dummies" , straightforward, simple and very helpful. As they improve, create agreements on responsibilities, they feel good that they are able to plan and do anything...we started with making the bed each day, they need to relearn mant things that the psychosis burns from their brain, but the brain is plastic and can create new pathways if patiently and regularly practiced. Lastly, don't settle for less than a psychiatrist, it was when we finally started in that direction that I felt like we had a doctor who knew what they were dealing with, these brain drugs are enormously complex.

    Best of luck.
  5. Carla's avatar
    Carla
    | Permalink
    My story is so similar to everyone else's on this page. I am a single parent with a 19 year old son. My son lives with me, I give him his medication daily, he sees a psychiatrist and a psychologist monthly but he still has delusions. He stays at home alone every day, he has no friends that I have seen, he is a high school drop out because of the illness but my biggest problem is that he is occasionally violent towards me and his aggressiveness is escalating as he gets older. I have few resources around and calling the police (with their guns and aggression) is terrifying. Management of mental health in this country is virtually non-existant. This is a crisis situation like HIV, Cancer, Alzheimers. We need better research and treatment. People's lives are destroyed by this illness.
  6. Lexi's avatar
    Lexi
    | Permalink
    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
  7. Sherry's avatar
    Sherry
    | Permalink
    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.
  8. Rio's avatar
    Rio
    | Permalink
    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 ❤️❤️❤️
  9. cheryl's avatar
    cheryl
    | Permalink
    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!
  10. 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.
  11. 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
  12. 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
  13. 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?
  14. Scott's avatar
    Scott
    | Permalink
    Here is a link to the NAMI support page - http://www.nami.org/Find-Support
  15. Vanessa's avatar
    Vanessa
    | Permalink
    Diane, NAMI hears you. Find your local organization.
  16. Sally's avatar
    Sally
    | Permalink
    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!
  17. 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.
  18. 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?
  19. 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
  20. 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?
  21. 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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