Why I Still Hate Schizophrenia

Let me be clear, I love my son Ben with all my heart. That will never change. If you’ve followed this blog or read my book, you already know that about me. If you, too, love someone who has a mental illness, you share that feeling or you wouldn’t be here on this site looking for support.

But, let’s admit it. These illnesses suck.

Love my son, hate his schizophrenia.

Not Fun in real life

Why this post, today? Because, once again, the game of Chute and Ladders that is “recovery” has made a move down the chute – and I don’t even remember throwing the dice to land on that fateful spot.

Spotting Relapse Symptoms in Schizophrenia

Family members of those with mental illness get extremely good at spotting signs of relapse. In our case, phase one is when Ben gets overly talkative, but in a very forced way.  ”MOMMY, HOW WAS YOUR DAY? TELL ME, I CAN’T WAIT TO HEAR!”.  Too cheery, too loud, too forced. Almost as though he is trying to drown out increased noise in his head by imitating social graces.

That is how Ben was acting yesterday – and also argumentative, childish, and distracted.  If we aren’t careful, phase two will come on its heels – distracted almost beyond engagement, depressed, uninterested in the things that have come to give him so much pleasure and meaning when his mind is balanced: friends, school, his job, cooking, family time, board games, video games, bike rides and walks.  He will plug in his ipod and headphones and tune us all out.

I hate that phase. But if gone untreated, the next phase is even worse: psychosis. The

Artwork by a Teen with Mental Illness

wait for him to be “sick enough” to be hospitalized. And, even then, the difficulties of getting him to take the meds that work. The law is NOT on our side, even when he gets a bed in a psych unit. This we know from experience: he can languish there for too long, taking ineffective meds at best or none at worst, while we hope and pray and plan for a way to “get him back on the right path.”

So we try to nip relapse in the bud before in blossoms once again into chaos.

Can We Find Reasons and Solutions for Relapse?

First question: Why might this be happening? And right now, we have no clear idea.

  • Could Ben be tampering with his liquid meds again, diluting them despite the lockbox that holds them? Did he get hold of the combination somehow? So we have changed the combination, and fortunately his refills are due so we will have a new bottle tomorrow.
  • Is it the fact that right now Ben has no structure? Spring semester hasn’t begun, he is still in seasonal-layoff from his job, his “room-mate” (a friend that currently lives with us, and is Ben’s best friend) was away this week,  and I haven’t been home much this week due to work. So – stress? loneliness? lack of structure/purpose?
  • Did he somehow smoke marijuana, or drink? Ben goes to meetings to stay clean/sober, and has been for years. But – well, you never know.
  • Did he purge this week after taking his meds? He used to do that but had stopped, and we require “sitting time” after he takes his meds. But were we too lax? Does he need to be watched for more minutes?

This morning Ben is still asleep, at nearly noon. This is often a good sign that his meds are effective, but I don’t know. Right now, we’re just enjoying the peace and quiet of Ben, asleep.  Then, it’s all serenity prayer stuff: do what we can (call the psychiatrist, get new meds, etc), let go of what we can’t do right now (cure schizophrenia), and try to stay with the idea that we have handles this before, and will handle it again.

Why Hate Schizophrenia?

Parenting is not about perfection, as we all learn very quickly when parenthood is real. Hopes and dreams must change as life happens. Why hate schizophrenia?  Because we don’t hate Ben. We love him - but that damn illness sure gets in the way of so much possibility.

I often think about my friends who have raised a beautiful son with Downs Syndrome. Their son Eddie is now 40, and is doing quite well – loves music, works part-time, enjoys photography. But my friends’ job as parents is quite different from what it would have been without the Downs. Caregiving lasts longer, vacations always include Eddie, medical issues come up frequently. Yes, they love him and will always care for him. But it isn’t always easy – nor is it “fair”, if there was such a thing in life.

I hate schizophrenia because it prevents Ben from moving ahead with his life. It gets in the way of every job he applies for, every friend he tries to make, every dream he has had so far of having a girlfriend, getting married, being a Dad. It forces him to be dependent on medication that he does not believe he needs. It puts him in a position that he knows is a drain on the family. Schizophrenia steals – even when treated to the best of current medicine’s abilities.

Schizophrenia has stolen joy from his eyes, clarity from his mind, possibilities from his future, depth from his relationships, money from his wallet. He wishes for a car of his own, a job above minimum wage, a life that includes progress – but he seldom complains. His old high school buddy is now the dentist that fills his cavities. His little sister has accomplishments he may never see. Yet he is one of the nicest people you’ll ever meet.

Today, though, it may be hard to be around him. Today, Ben may spend his day sitting at the local Starbucks, the “weird kid always singing to the music in his headphones” sitting in the corner with one cup of coffee for hours (though he does tip well). I hate this. I hate the ticking time bomb, always in danger of being re-set, that is schizophrenia.

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25 Responses to Why I Still Hate Schizophrenia

  1. Jan says:

    Love you. My heart reaches out to you.

  2. Claire says:

    I read your comments with sadness. My thoughts and prayers are with you.

  3. Randye Kaye says:

    Many thanks to you both…unfortunately, this is part of the process. Sometimes I fear I have painted too “rosy” a picture of our family’s journey, since my intent is to share hope and gratitude, which we still have. But I’d be dishonest not to share the darker sides as well. Today there has been some improvement, so we are hoping we may have caught this in time. Your support is very much appreciated! As I wrote in the intro to my book, “our story is not unique. One out every family in the United States deals with mental illness.”
    With thanks and hope, randye

  4. cynthia says:

    thank you for your honesty as painful as it is. I just started reading your book and have already cried while reading the similarities. we are currently in a crisis with our son who is undiagnosed and refuses to seek any type of treatment. he is 18. your book brings hope along with the reality of what our journey might be like.

  5. Ellen says:

    I’m thinking of you, Randye. Love, Ellen R

  6. Randye Kaye says:

    Thank you so much, Cynthia. Not gonna lie ( as my daughter says), you do have quite a journey ahead…but a number of things can help. A big one is to never give up hope – and to not try to handle it all alone. The fact that are reading about mental illness shows that you’re already invested in learning about the illness and what’s ahead. Education and support saved us, and helped us toward acceptance – which, as you can see from this post, doesn’t mean we “approve.”

    Happy to say that today seems brighter. Ben seems to have balanced again, for now. Extra vigilance on our part re meds supervision may have helped. There are just so many variables.

    Self- care, including getting help and hope, is a choice you must make to get through this. Sometimes it feels like the only choice. As the book progresses, more tips emerge that I help will guide and comfort, while being really clear about the downside as well.
    My very best to you,

  7. Nancy says:

    We have been dealing with this illness for 10 years now. My son, who just turned 27 has been hospitalized 9 times. Each time he gets out, we are so full of hope because he is stabilized and I feel I have my son back. But, after a few days he goes off his meds and I lose him all over again to that hated disease. I, too, read your book and can relate to so much of it. I am so sorry that you or any other mother has to suffer the hopelessness of watching the joy vanish from your child and the bright future that they are robbed of because of this hated disease.

  8. Sorry.

    We’re on the lookout too. Tim takes the opposite tack this time of year. He is more withdrawn, more easily irritable, headphones on 24/7, sleeping with a fan on even though it’s 5 degrees outside for the white noise. Tim’s longest ever hospital stays were in March, and every year as winter drags on, I get nervous.

    Here’s to hoping – for Ben and Tim this Winter.

    – Chrisa

  9. Shari says:

    I read this and know what you speak of here. Our son is only 11 and has the diagnosis of Bipolar Disorder with psychotic features. We know when things are going down hill. He never fights us to take his meds or go to his appointments. But–he knows something is wrong and he certainly doesn’t understand. All we can do is love him, advocate for him, support him, and show him how important he is as a person regardless of his circumstances. I know we will be caring for him for a long time. And I will try and do it with love, grace and patience. Just for him. Thank you for writing this. I have read your book.

  10. I appreciate your candor in sharing the “dark” side of loving and caring for a family member with schizophrenia. I’ve researched and written about individuals with schizophrenia who did not have effective support/care of family or community, and their illness drove them to commit terrible crimes, often against the people who loved them most. And that is another reason why we hate schizophrenia. Like Alzheimers, it robs of us of the people we knew and replaces them with another version, never to be the same, never to be whole. The potential that is lost is so hearbreaking. Randye, thank you for your brave voice. — Janice Holly Booth

  11. Janelle Clauson says:

    Hello Randye I am just reading your blog for the first time . My sister sent the link to me . My son is now on his third Communiy Treatment Order which is treatment against his will via a court order . It has taken a year to be well and socialise and he still can’t see how beneficial the meds are to him . He completed his trade after he was hospitalised and had quit his apprenticeship with a month to go until he was to finish . He was preparing to leave this world . I have a wonderful support team at our Mental Health Centre . My saving grace his been the Depo injections . I will continue to fight for these every 6 months to keep not only him safe but the rest of my family .

  12. Randye Kaye says:

    Janelle, Shari, Janice, Nancy, Chrisa…thanks so much for sharing your experiences here. As you can see, we are not alone – and yet we can feel so alone at times. You are brave, loving, and resilient. Depos can be lifesavers, if our loved ones will agree to try them. I think I have let go of expecting my son to see the value of his meds…that may never happen, but I will dance for joy if he “gets it”. Meanwhile, each day he takes the meds anyway is a good one for us. Hope must come with so much patience. Thanks for reading and commenting – and am so glad you like the book as well. Randye

  13. Jolanta says:

    You are such a great mom. God bless your soul!!!

  14. Maggie Bair says:

    Thank you for sharing your pain. I have not read your blog before now, and it is something I can definitely relate to. It is good to have a community that understands. It is so hard to watch our loved ones go through this horrible disease. My love and prayers go out to ALL affected; I believe we are some of the bravest people on earth!

  15. Sharon says:

    Thank you so much for sharing your family’s story. These are the types of things that will make our society more informed about illnesses that are still hidden by many.
    I have suffered from anxiety since I was 9 years old but wasn’t diagnosed until I was 18. My first experience with depression was later in life. I was lucky that time–the first medication tried, put it into remission.
    In 2007 an incident at work pushed me into another depression. This time it is treatment resistant. I am currently taking 6 different psych meds. I have previously been treated with ECT. I am presently enjoying a break from that.

    I wish you, Ben, and other family and friends all the best. Thank you again with sharing your experiences with Schizophrenia. It helps those of us with a mental illness understand other illnesses and how families are affected. More importantly, I hope those that are completely ignorant when it comes to mental illness will take another step toward understanding.

  16. Joan says:

    I live this life with my son also.
    I never know what to write on blogs about him because it is all so overwhelming… I do not know where to start.

    I am glad and thankful for all who have posted because your postings help me to know that there are others who do understand.

  17. Amy Kerr says:

    Living this now, nice to know we are not alone. God bless us with peace, patience and understanding. I find prayer is my only comfort in these situations. I find my son now prays because I do and it helps diffuse him, no matter where we are on the ladder.

  18. Randye Kaye says:

    May we all find our ways to cope, and to help each other! Thank you all for sharing here

  19. Kelly says:

    Randye, thank you for sharing your life with us. My son is 22, soon to be 23 and is suffering daily with Schizophrenia. You and your family are in my thoughts and prayers, as is everyone else living with this. Lord knows we need all the prayers we can get!

  20. Momma B says:

    Dear Randye, have read several of your blogs. Our 28 year old son has schizophrenia as well. He isn’t taking his meds and is so full of hate. The mean things that he says to us is inexcusable. We think he got this from smoking pot from Jr.high. We feel that nothing will change until he gets back on his meds.,goes to a weekly therapist and does cognitive behavior. Will not do anything. Does have a job but is seasonal. Sleeps all day, and up all night. Brought home a big dog yesterday. Want him to take it to a shelter ,but he’d rather move out. Why so stubborn? We love our son, but hate the disease. Have hardly told anyone that he has this. People don’t understand. Am numb to all of this chaos today, but probably will be in care giving mode if he’ll let me tomorrow. This is a terrible horrible draining disease for the entire family. Hang in there, momma b

  21. Randye Kaye says:

    Ow,wow. You hang in there too! You are not alone

  22. Momma B says:

    Thank you! We feel alone. We would like to just force ably take dog to animal shelter. Afraid of his reaction!

    Momma B’s Hubby

  23. lorretta needham says:

    To randye kaye…im going to guess that your son ben is not on first generation antipsychotics. Why? Because doctors are under illusion newer is better and THEYRE NOT! My dear precious brother started medication at age 39. Having been listening to voices since age 28. NONE of his meds were as effective as the first which was Navane. Find an older compliant patient who is doing wellon their meds and u will find someone on low doses of first generation meds. Like Haldol.

  24. Mishell E says:

    Thank you for posting your story. My son is in relapse at this time. Weeks of loud music and smashing some things (walls). He takes his meds, but something is wrong. He has community support workers, but they don’t live here or pend more than 20mins a week. Your lists are my lists. We just had another episode here this evening and I was feeling very isolated. I thought I’d check FB and pretend everything is fine. I became so frustrated that I typed “I hate schizophrenia” and your blog was 1st on the search results. Surprisingly, I’ve calmed down and found my compassion again. Thank you!

  25. Mishell E says:

    Thank you for posting your story. My son is in relapse at this time. Weeks of loud music and smashing some things (walls). He takes his meds, but something is wrong. He has community support workers, but they don’t live here or spend more than 20mins a week. Your lists are my lists; right down to the hours spent every day at the local coffee shop. We just had another episode here this evening and I was feeling very isolated (perhaps even sorry for myself). I’m not new to this illness; my mother and both sons, but it doesn’t make it any easier when you’re in crisis mode. Tonight I thought I’d check FB and pretend everything is fine. I became so frustrated that I typed “I hate schizophrenia” and your blog was 1st on the search results. There is no pleasure when reading about your pain, but there is comfort knowing there are others that really understand. Surprisingly, I’ve calmed down and found my compassion again.
    Thank you!

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