Family and Caregiver Schizophrenia Discussion Forum

The Fortunate Mother: Caring for a son with schizophrenia


#1

Fortunate Mother
#2

The caregivers for schizophrenics face a huge, daunting task. They have my sympathy and my respect.


#3

I am so sorry to my parent,I giventhem a lot of trouble and problem especially emotionally,I hope my condition can improve and let them not had so much stress

I take my medicine as prescribed and exercise daily,one nd half hours daily continuous,yet my mental health seems not to improve


#4

There are times… I have NO idea how my parents handled me and kept themselves together. They make it look so easy…


#5

firemonkey, thank you for bringing this to our attention. Just had a difficult weekend with my husband (my son’s stepson) who doesn’t want to deal with my son. I sent him the link to this. He really doesn’t ‘get’ how I feel.


#6

This made me very sad.
It`s the same story-a never-ending one…:(.


#7

Why would ANYONE want to post this story. It serves no HOPE or PURPOSE. No solution’s. Yes, Schizophrenia is a deadly disease. (not just for the physical destruction of our bodies) but its also, a disease where the suicide rate is …high.

I have lived this nightmare for years. YES. I also have lost friends to this damned disease.

The TRUTH? …most people don’t recover. They don’t get a “happy ending” . There is no “Miracle” for most sufferers.

Its torture and torment…day in and day out. (not just for the Patient) but for the family. So maybe i’m wrong for saying this, but i HATE stories of tragedy. The reason is, i believe the power of HOPE can and will change lives for the better.

Its possible to heal. I am LIVING PROOF of the healing now.

Personally? I won’t even THINK or ENTERTAIN the idea of suicide. I won’t. I am stubborn that way.

Schizophrenia? …does KILL. (if its not managed).

Hope someone out there…won’t give up on their loved one. Don’t let this story. STEAL your hope or your joy.

God Bless


#8

I hear your frustration. I understand. No one wants to hear or read sad things. Everyone wants to think positive. But it can’t be all rainbows and positivity either to bring about real change. There’s more than one aspect to this illness. Try to realize that you may be in the minority of SCZ patients. Only 25% of patients with schizophrenia will recover as you have. The remaining 75% will remain somewhere between chronic and crisis all their life. 15% of them will be homeless. 10% will die at their own hands. Those are the statistics, they’re real. They’re awful and no one should hide from them. The purpose of the article is to educate people - the message is that people who suffer from schizophrenia AND the people who support those individuals need HELP, support, and empathy. We need to not be ignored just because we’re such a small minority, or because it’s so rare. I’m going to share some of my perspective after reading the article.

There’s so much stigma with SCZ. I personally applaud this article because I’m in the midst of exactly what she talks about. My child is 10. She’s already in the chronic category, with 4 admissions in 2 years, 3 of which are in the last six months. We called the police on her when she was 7 and trying to run away from home. She’s had three episodes of psychosis. She’s getting worse and I SEE IT. We’re losing the battle with her, a little every day. And we caught it early. I got educated, I became an advocate for her as soon as I understood what was happening. I’ve learned and continue to learn every day. Even so, my daughter has been suicidal for 3 years. 30% of her life so far she’s wanted to die because of the horrible things she sees and feels and hears. Doctors don’t believe me. My friends don’t believe me. Sometimes even I don’t want to believe it.

I’m happy for you that you could heal. I’m happy for anyone who has this horrible illness who can heal. But I’m afraid my daughter has already turned the corner past the possibility of a complete recovery. There are changes to her that can’t be undone. All we’re doing is slowing the decline, stalling it a little. I hope we’re buying time for them to research and understand this illness better. To find better medications, better therapies, better solutions. But the medical field moves slowly. So, for now, we’re able to contain some of the worst symptoms. For now, she can still somewhat function. But in 2 years? In 6 years like the woman in the article? I don’t know where we’ll be, but at this rate, it won’t be anywhere good. Puberty will be hell. That much I’m certain of. I’ve accepted that I will be responsible for her, in some fashion, for the rest of my life (I’m 38). I’ve made peace with that.

Every day I give a score for the day based on her symptoms. She was released from the hospital 3 days ago after a stay of 7 days. 12 hours after release she was a 6. The next day she was a 4. Today? She scored a 16, with four visual hallucinations, 1 smell hallucination, and 1 taste hallucination. I started tracking her symptoms on December 13, which is 38 days ago. In that time she’s had 184 symptoms that I KNOW about. That’s an average of 4 symptoms a day. 18 of those days were inpatient so I couldn’t track her symptoms as closely. If you take those days out, her average symptoms daily are 9. And she’s on 1mg of Risperidone and 10mg of Lexapro.

Despite all of that, I will not give up on her. This is one of the hardest things I’ve ever endured in my life. The pain each day is beyond words. But I can’t give up. She’s my daughter, I love her. I am quite literally all she’s got. I quite possibly would give up everything I am and even my very life if it would help her, even though common sense says I shouldn’t. I haven’t given up hope, but I have set realistic expectations. If I can keep her compliant, keep her taking her meds, give her some joy each day, and there’s a glimmer of HER, not just this illness, we’ve won the day. And we literally live day by day now. If I can get her properly diagnosed, get her Medicaid coverage, and establish legal protections for when she becomes an adult, I will have achieved some measure of success for her. Getting her stable and able to function to whatever level she’s capable of is my current goal. My life goal now is to protect her, to keep her safe and alive and hopefully healthy physically, and to give her whatever happiness she and I can find.

I’m living a tragedy every minute of every day. And I’m glad someone has helped to put a face to it, put words to it, and is trying to bring about awareness. Because how people treat my daughter right now breaks my heart. Everyone and I mean EVERYONE I have talked to has initially tried to suggest her issues are behavioral or deliberate or something she will grow out of. Anything but schizophrenia. She’s been this way her whole life (since age 2). They said she’d grow out of dyslexia too (and I diagnosed that too, two years before anyone else was willing to). The truth is, she’s not going to grow out of this. I’ll be happy if it just slows down or stops for a while.

If there’s a way to heal her from this, I will be pleasantly surprised and thrilled to be wrong but I’m pretty sure I’m not. That doesn’t give me despair, it keeps me from getting my hopes up too high when she has a particularly good day and then crushed when the next day is worse. It keeps me from being blind to what this is. I will never stop seeking to heal her. I’m just not going to get my hopes up because I see what it’s doing to her. Every day, it’s like watching quicksand slowly creeping up her body. One day the little girl I know may be gone completely if we can’t find a way to stop this. And that is a tragedy people need to know about. Even if it’s ugly. Because it’s REAL and it’s HAPPENING right NOW to our family. And there’s no one I can blame. There’s no dragon to slay. But there is a way I can work to get people educated and keep them from being apathetic to the situation.

Years ago, AIDS followed a similar path. It wasn’t until enough people learned about it that real CHANGE happened. And now, AIDS isn’t an immediate death sentence. It took more than 20 years, countless fundraising and research hours, but it’s getting better. The only way that happened was from people putting a human face to the disease (if you haven’t heard of Ryan White you should Google him) and changing people’s uneducated views. It took making the tragedy REAL to everyone, not just the people affected. Here’s some interesting AIDS facts:

36.7 million people worldwide living with HIV/AIDS at the end of 2016. Of these, 2.1 million were children (<15 years old).

The world population is 7 billion. That means .0050% of the population has AIDS. Compare that to 1980, when the average diagnosis rate was 150,000 per year worldwide. Schizophrenia is 50% rarer than AIDS. Which means all of us have to work 50% harder to make the rest of the world understand what this illness is and what it looks like to live with it every day.


#9

Sometimes staying stable is an achievement in and of itself. It’s a battle each day. Don’t sell yourself short by expecting big improvements. Staying stable can be a big achievement too. Keep doing what you’re doing and don’t get discouraged! <3


#10

I can definitely compare the two diseases of AIDS and Schizophrenia. I have often said and even used to write in my journal. The similarities of AIDS and SCHIZOPHRENIA. How people are TERRIFIED of those…with a diagnosis of either / or.

People fear AIDS. (its contagious) and it used to kill within 6 months of infection. There was a time there was no hope for a person infected. It was a death Sentence. But Thanks to medical advances that’s no longer the case.

The thoughts also, were always. “Schizophrenia” kills. Going Postal…etc etc etc… People don’t realize, that its not the majority of cases. It took a lot of years and being full of terror because of a “label” that to this day…never felt “right”. I don’t “fit” the profile of a Schizophrenic according to the world. I never committed a crime. I NEVER harmed anyone. I never ever tried to hurt anyone. I never owned a gun. (never will) i never entertained the idea of …gun crimes. (or a knife) as Charles Manson and his cult had done.

The ideas of “Violence” can’t help but cross your mind. (and most likely the family) What happens when, that’s not the TRUTH…of most cases? Lets be real. MOST people…are terrified of people with a Mental Health diagnosis. . The Stigma is hell. And its NOT true. MOST of us…live in terror …locked inside our minds…within our homes. MOST of us…society doesn’t see. Because we are terrified.

Our families…(and society) doesn’t realize…WE ARE MORE SCARED OF THEM. than they are of us. Weather is delusions …or …paranoia. …To those who are ill…its REAL. The patient believes…there is DANGER around every corner. …As painful as this is to hear. MANY of us…have been abused. Its a known cycle. The most vulnerable of our society…are usually harmed. Its a sad truth…but its REAL.

The saddest thing. MOST predators…know. When someone is …vulnerable. They know. Its a known phenomena…that most of us with a serious mental illness. (will be abused) . and not just a single time. There are many different ways…to abuse someone.

The BEST gift…is to teach your children. (adults also) how to protect themselves. Not just physically but also…emotionally. There are a lot of sick people in our world…that LIKE to hurt…the mentally ill. They are pure hate. I’ve come across…enough trash…to now know…to be aware. The saddest…is …some people…just DON"T CARE…who they hurt.

I hope someday our society will …evolve into a better and kinder world. I just hope so.


#11

That makes two of us. As someone who is a survivor of countless tragedies including incest (father), neglect, abandonment, rape, kidnapping and twice attempted murder, I have experienced some of the worst the world has to offer. I have survived and thrived despite it. And what I have found is just as there is bad, there is an equal amount or more of good. It’s not always visible, but it’s there.

There are always going to be predators in our society, but I firmly believe the good among us can join and band together to fight back against it. We can overcome it.

I may be a dreamer but at least I am not the only one.
John Lennon

You are not the only one with that hope and that dream for our world and you won’t be the last.


#12

Yes, I also am a survivor of rape… So I understand true pain and anguish. (Terror of it happening again). its haunting. Oh yes, i have healed by leaps and bounds. But …i still got a way to go.

So…here is a song…for Girls…like us!!! …

Enjoy!!!

We Might be down. But we are NOT out. !!! :smiley:


#15

Never give up hope never!!!