Family and Caregiver Schizophrenia Discussion Forum

My son is in denial of his diagnosis


#1

My son has been diagnosed with paranoid schizophrenia but is in denial. He admits to hearing voices but doesn’t think that’s unusual. He firmly believes that there is a person out to kill him. That’s his reality and nothing we tell him changes that.
He is currently in a residential treatment facility but will be discharged soon because there isn’t much more they can do since he is in denial.
I am concerned that he will have another paranoid episode when he comes home and I won’t be able to help him. I have gotten temporary guardianship for medical reasons since he is 19.

I have spent the last 6 months trying to learn everything I can about his diagnosis so I could understand what he is going through but this has caused more stress than ever for me. I feel so inadequate to help him.

My life has spiraled down and now I am experiencing panic attacks and depression. This is all just from knowing he will be home soon and I have no idea how to help him.

I don’t have any family that I can lean on. I feel very isolated right now.
I know that once he is home we will adjust but right now I am so afraid.


#2

You’ll get a lot of support here. Is he on meds or can the facility where he is get him on meds (court ordered) before they discharge him? It’s a rough road. My son now on meds and working once I’m meds (3 weeks I’m locked hospital and 3 in transition home).


#3

Hi. I’m so sorry you’re going through this. We all know about the terrible stress that comes with this illness, so you’re not alone.

What did your son do that landed him in a residential treatment facility? Did it involve physical aggression or violence?

Can the treatment facility send him back to a hospital? Is that where he was before the residential treatment facility?

You can tell the hospital you refuse to take him back into your home unless he’s on medication. That’s what we did. The hospital might then get court ordered meds through a civil court hearing. That’s what happened for us because our son initially refused meds.

Another “line we drew in the sand” during our son’s next hospitalization was that the meds had to be monthly injections in order for him to come back to our house. That worked too.

You can set these boundaries and force the hospital to act. Our son’s hospital psych doc was glad we were setting boundaries.

Even if the residential facility won’t re-hospitalize him, you can still refuse to take him back. Force the RTF to act. Play hardball, even if you’re not sure you’ll follow through in the end.

You don’t have to be held hostage by this illness. I know it’s easier said than done.


#4

My son had been in about 4 Psych ERs before he attempted suicide. Then he was in 2 more after that. This is all in the span from Dec 2017 to Mar 2018 - 4 months. The last hospital helped me find the treatment facility but the only one that insurance approved was in GA and I am in TX. So I haven’t been able to see him. I do receive calls from him.

He is on meds - the Dr. there has been awesome about finding the best one for him. All the other hospitals just treated the immediate danger and sent him home. He was on so many meds that even I couldn’t keep up with them. But now he is on a monthly injection with several other daily meds for side effects and to help him sleep. He has always been compliant on his meds - he just doesnt think there is anything wrong with him.

I do have temporary guardianship of him for all medical decisions until at least December.
He hears voices that tell him he is going to be tortured and killed. He said he would be safe if he came home and I got cameras for the house - the bad people wont do anything on camera. But again, he doesn’t agree with his diagnosis. Since he doesnt think there is anything wrong with him, the treatment facility is having a hard time trying to treat him. There isn’t much they can do. They have done some CBT with him but again he doesn’t think he has schizophrenia - tells me he lied about that just to get in the hospitals because the bad people couldn’t kill him while he was in the hospital. He doesn’t see how bizarre that sounds.

I know in my heart that when he gets home that he will relapse. I know that is a negative way to think but I haven’t had anything positive happen lately to sway my thought process. I have reached a real low point in my life and he isnt even home yet. I am so worried about when he does come home. My friends just don’ understand. They keep saying ‘well he is in a safe place now’ so why are you so worried about him’. They tell me to just go for a walk or go workout…go find something to do to get your mind off everything. I have tried but when I stop it all comes flooding back.

I am glad I found this group. I know I need help. I was seeing a counselor but we had a difference of opinion that I couldnt get past. I am looking for a new one because I know I need someone to talk to. I know I have to be in the right frame of mind to help my son and right not I am not.


#5

Ok good, so he’s on injectable meds. That’s great.

How long has he been on them? What med is it? What dosage?

He might be ok when he gets home. He could still be psychotic though, for many months more. That’s how it’s worked for us.


#6

He just started the injections this week. He will be on Haldol. I don’t have the dosage yet. This is a change from his pills so the doctor is doing it gradually.

I appreciate the help. I am beginning to realize that I need to seriously adjust my life to get through this with him. It doesn’t have to be a negative experience. I just need to adjust to the new normal. But knowing and doing are two entirely separate things.


#7

Great that he is on injections. He should start to clear up more and more. I would think he needs to be more stable before they discharge him. Have you voiced your concerns to that facility where he is. Can you go for a visit before he’s realeased and meet with his counselor and him? I did that and gave my son a typed list of what was required to live with me. Is dad in the picture?

Ps - I’ve been taking sarcosine. This is something they recommend for people with sz and/or severe depression. I took it because I was giving it to my son in smoothies and I believe it’s helped with some depression.
Pss - my son doesn’t have insight either- however we just talk about the symptoms and he seems to at least acknowledge that. He was diagnosed with schizophrenia. The doctor told him that and disorganized thinking and anxiety so that’s what I say if mentioning it go him. I think it’s easier to accept vs. schizophrenia.
Hang with us many of us have been in your shoes. I was totally nervous when my son came home.


#8

I am planning on going to GA on last weekend of July. And his therapist has been very helpful and adamant about having the safety plan before he is discharged. The treatment facility has been wonderful.

His dad is in denial as well and not in the picture…occasionally he requests updates but doesn’t want to be more involved. He is remarried with another kid.

Thanks for the insight on how to talk to him. That has been a worry for me. I don’t want to act like there is nothing wrong but also dont want to antagonize the situation.

Thanks for the help. I am beginning to feel like I might be okay. Just going to take time.


#9

Meileigh, has anyone suggested to you that your son isn’t actually in denial? Many of our family members with scz suffer from the symptom anosognosia. This symptom of their illness -its a real symptom - and keeps them from being able to understand they are ill. One of the ways it it phrased is “your son is so sick he is unable to understand he is sick”.

Now your son’s dad? That is more likely to be denial or the dad can be feigning denial to not have to deal with it.


#10

Don’t be afraid and don’t over think , you’ll know what to do ,just take one step at a time ,stay strong we have to for our loved ones❤️


#11

Thank you. I needed to be reminded that it’s a journey not a sprint.


#12

I’m joining in as someone who has had similar experiences, just to let you know you have one more person who understands and will try to be here to give you support when you need it.

I hope the meds can provide your son with enough stability to make the transition home workable. I know how nervous you must feel. If he will accept outside help from community mental health services, reach out for that. I understand if your son doesn’t cooperate with it tho - my son also doesn’t have insight and so feels he doesn’t need that help - yet expects it from me.


#13

I was nervous and terrified about my son coming home from the mental hospital 3 years ago.I still suffer from anxiety and panic attacks. My son’ s dad is not involved with his care so it is all on me. Well, its been 3 years now since my son has been out of hospital and its been a rocky road, but my son does now live in his own apt near me and I do have to help him everyday but he is stable, tho very isolated. I am the only person now that he goes anywhere with. Things are awful for you now, but you are stronger than you think and you are not alone with all this . You will get used to all this and become better able to handle it all.


#14

We are currently working on a safety plan for when he comes home. He is saying all the right things right now because he wants to get released so I am trying to find all the resources I can around where we live.

I am nervous but know that I have to figure it out. I appreciate everyone’s support. I was feeling so lost and alone. I am glad I found this site. It has been a wealth of information and support.


#15

I understand where you are at, and can sympathize and I care that you are worried. The first 6 months of my daughter’s illness I was afraid. However, looking back, she was never violent or threatening, and it would have been best for me to have not been afraid. I caused my own anxiety to be higher than it needed to be. She was calling the cops often, paranoid about her step-father. That got her hospitalized 3 times. She finally stopped calling the police, and hasn’t been hospitalized in 7 months. I am no longer afraid of her, although I am constantly startled by her weird outbursts (that she cannot at all see as weird or outbursts). She has anosognosia as @hope mentioned. She is not in denial, she CANNOT see that she is ill. No one has been able to help her see that she is ill. You hopefully will be able to keep your son on medicines for something, even if it isn’t (in his mind) for psychosis but for anxiety or something. When my daughter was forced onto a Haldol injection during one of her hospitalizations, she came home with no symptoms at all. BUT she refused further medicine, as she cannot see that the problem is with her own mind and not with the people around her. NAMI support meetings and the book “I am not sick, I don’t need help” are the best tools to help cope. Good luck, be especially kind to yourself and try to be kind to your son.


#16

Omg this is so me!!! Reading this has me in a total panic My son is the Hosiptal. He thinks Someone is going to kill him
They will most likely send him home I’m not equipped to deal with this on my own. I


#17

Hello Calm. I’m sorry you’re in the same boat as many of us have been or currently are in. On multiple threads, I’ve said that we had to say no to our son being released from the hospital to us unless certain expectations were met. The most critical expectation we laid out was that our son was to be on monthly injectable medication, specifically Invega Sustenna.

When you have the upper hand to gain control of this beast of an illness, you have to milk it for everything you can. In other words, tell the hospital Social Worker you can’t and won’t take him into your home. It will force the hospital team to work harder to come up with a better, more thought out plan for discharge. You can always change your mind at the last minute, if they suck at their jobs.


#18

Hello Calm, Most importantly, try not to panic, you will find that you are stronger than you ever thought you could be as you deal with this “beast of an illness” as @Day-by-Day so aptly put it. No one wishes this type of illness on anyone, and the caregivers suffer along with their loved one’s suffering.

In my town, I could not refuse for my daughter to come home legally. I tried to have her sent to a live in program which magically had a bed open thanks to a very wonderful social worker, but my daughter refused to go. I would have to evict her with a lawsuit to prevent her coming back to my home.

The laws are soooooo weird. We can’t get access to medical records or treatment due to the HIPPA laws without our loved one’s consent (but the loved one is in psychosis, how does that make sense?). We can’t threaten homelessness without paying $400 for eviction first. We can’t live calmly in our own homes or even be thanked for the support we ARE giving except for those few moments or days when our loved one has a lucid moment, and if we call the police, the resentment from our loved one only builds…

It helps me to come here and read and post and reflect. My heart bleeds for all afflicted with schizophrenia now, and I used to be such an awful, prejudiced person against those with mental illness 2.5 years ago, before my daughter got ill. I was mad at her for 1 year, arguing and demanding she “snap out of it” which is just not possible for someone truly ill.

Be kind to yourself, it isn’t your fault, and it isn’t fair that you have to try to solve unsolvable problems forced on you by this horrible illness. You must be strong for yourself. You can be. Keep coming here to read and post. We understand.


#19

This seemed to be true for me as well. @Calm - I put my son in the hospital and at about day 5 they told me if they couldn’t get a bed for him in a longer term place he would likely go home with me - my instant knee jerk reactions was - no way. Which came out as un uh. That got the doctor and social worker on my side and they got him on court ordered meds. They should not release him until he is stable.


#20

Just watching the film brain on fire on Netflix which a member recommended , the parents are kind of stupid when a doctor recommends psychiatric hospital to them , I mean you must have some knowledge if your educated abt illnesses ,right ? Anyway I recommend the movie to you all