Son experiencing Psychosis how can I help?

momof3 · June 1, 2022, 8:30pm

I have been offline for a while trying to enjoy the good days and recover from the exhaustion/burn out of full-time caregiving. Our 20 yo son who lives with us (husband and 2 sisters) was diagnosed with SZ 17 months ago with his first Psychotic episode. He has been off medication the last 6 months. He has no insight into his illness (anosognosia) and will not accept the diagnosis of SZ, he does however believe he has anxiety.
At first he was doing well but since Mar-Apr he has been declining. He is a shell of the person he once was.It is obvious to us he is and has been experiencing auditory and visual hallucinations, gets easily confused, combative, confrontation and agitated. experiencing disorganized speech and delusional thinking (someone outside pointing lasers at his room). He rarely eats, once a day and I’m not sure how little sleep he gets.

I’ve tried to reach out to many places looking for resources or orientation on what to do but I’ve only gotten more confused and overwhelmed and I feel helpless. It breaks my heart to see him declining but he will not go willingly to get assistance.

The options so far are very extreme; a lengthy process to get him involuntarily committed and his right taken, wait until he commits a crime or the path of less resistance: he willingly seeks a medical evaluation or talk to his psychiatrist for medication.

I feel so alone, as if I am the one that has to make “the call”, my husband works all the time and is never present in any medical appointments, training/education or support groups - so he will constantly tell me “its simple have him hospitalized”, my oldest daughter (21 yo) whom he is super close to, tends to avoid the house because “this is too much responsibility” and my youngest daughter (16 yo) is supportive but struggling with her mental health. This is a lot to witness/live with on a daily.

I am conflicted on what to do. I feel hopeless and paralyzed by pain. To see him go through this dailyis like having a piece of your soul ripped away, its suffocating.
I feel like I’m dammed if I do, dammed if I don’t. If I have him involuntarily committed he will feel betrayed by his only mother, who’s role was to protect him… we’ve always had a close, loving, nurturing - an incredible relationship prior to this horrible illness - which is what I grief for daily.

I don’t know what to do?!

hope · June 2, 2022, 1:55pm

I am so sorry your son stopped taking his meds. My son has always believed that anxiety was his main issue. Of course, with auditory and visual hallucinations, confusion and delusions, it is easy to see why our sons are anxious.

My son and I were very close, because of that, it was best for me to be the one making the decisions. Oh, such hard decisions we face in those early years! My husband was still working at the time and all of the responsibility for gaining knowledge and decisions fell on me. My husband did attend Family to Family - he missed a couple of sessions to attend events that were more important to him. Still boggles my mind that a live sports event was more important than trying to figure out how to help our son. Okay, slight rant, back to your situation. Parenting has always been about making hard decisions and dealing with the consequences. Parenting of an adult chlld with neurodiverse/schizophrenia is parental decision making and consequences on steroids.

I understand now that my husband and I were at different places in understanding our son’s situation.

I had to make “the call” each time and that continues today. Everyone here knows it just isn’t that easy to have an adult child hospitalized.

You said you have reached out to many resources. Do you talk to your son using Dr Amador’s LEAP method? Have you been able to find out if your son has desires in his life? For some of our family members it can be something simple like cigarettes, for others, its a return to school, their own place to live or a job that gives them self esteem. Meds can help them attain some of these personal goals and we have to work towards helping them get to their future.

The key to moving forward is listening to your son and trying to chart a course from what you hear. Many of our family members do better when they don’t live with their families.

For a long time I was where you are, unable to figure out what was my best move. Eventually I could see a possible path. I do think that when my son lived by himself on our property, without the stress of a job, he began to learn how to handle his manage his neurodiverseness.

At our initial appointment with a psychiatrist that specialized in severe brain disorders, we were told to get him diagnosed, get him on disability and/or ssi. He did advise us to try to get him on court ordered meds. The doctor said, “Yes, your son will be angry, but, you must try”.

Take care, hope

Lovemom · June 2, 2022, 6:03pm

This is very familiar with myself and our love one, it’s sooo heart wrenching🤗, I believe it’s a positive that you and your son were very close prior to the onset of the diagnosis, I believe you will continue to have that in time, because he is not eating or talking much and I know it’s hard, I did call the response team and went to see the judge for our son, got him in the hospital with a great support team, it’s ok as a parent that your son may feel you betrayed him, because I believe he will in time know you love him❤️

momof3 · June 2, 2022, 10:25pm

Thank you for sharing your experience communicating with others always gives me hope which is super critical in these dark times.

I do have the book and have tried talking to him but I don’t feel confident doing so because he has been so distressed. He is easily irritated and confused we can’t seem to be able to have a calm rational conversation.
Any time we talk it’s short 3-4 words from him, when I repeat what I heard, he says “that’s not what I said or you’re not interested in having a conversation with me” when in reality I am all ears and would love to have a conversation with him I miss talking and sharing - I miss him and I love him endlessly.

When he mumbles words, I can’t make out what he says so I’ll say to him “I’m sorry I didn’t catch that, can you please repeat that for me” he then so gets frustrated and storms off.
Sometimes he will say things that don’t make any sense (word salad). Regardless of what he does or says, my job is to always stay calm, cool and collected. But the reality is that inside my panic gets triggered, my brain freezes and I am in crisis mode! And because I am the only one that sees to him, I am in survival mode… and I am terrified!

momof3 · June 2, 2022, 10:39pm

thank you for sharing, truly. I just don’t know how to take that first step. before the diagnosis he used to talk to me about anything and everything, now there is constant paranoia, frustration and confusion.

3 weeks ago he grabbed some clothes and took off in his car, he wouldn’t answer calls or texts. That was the most difficult thing I’ve experienced! For 9 hours we didn’t know if he was alive, okay or where he was at? Filed a missing persons report I felt so hopeless.

He only messaged his older sister (21) after hours and hours of disappearing told her he was driving West, as in California. I was able to check credit card activity and saw he stopped to refuel in Iowa, 4 hours from home. He returned home after 9 excruciating hours, he came back for his sister, told her he got scared and felt lost, he came back to get her so that they could both move.

Since then I feel the need to stand guard! It’s hard to sleep, eat or leave our home. I am terrified of what he might do when I am not awake or guarding. I live in constant fear of the worst case scenario.

I am in crisis mode.

Chong · June 7, 2022, 8:57am

What you described sounds like the journey I started with my daughter when she had her first severe psychosis many years ago. We are very close and I guess that helped a lot. What I learned and wished I had done differently:-

I don’t have to find the answers to all her problems and some of those she will figure it out eventually
What is more important is her wellbeing and her outlook. E.g. setting expectations what she could and could not do due to limitation of her illness. I found that helping my daughter set a lower expectation can get more done than getting stressed about it. There is much I don’t know what she could not do, and I had hope there is much she could. It is a learning process and I got it wrong often.
When it gets too hard and I can’t think straight or whatever I do is not helping, hospitalisation actually helps

It’s painful to see our loved ones fall ill.

Katiajb1 · June 7, 2022, 7:41pm

I first want to say you are not alone. These are questions we as parents grapple with every day and second. Trying to get help for your child leaves you paralyzed half the time as you try to do what’s best. As we speak I just dropped my son off to “voluntarily admission” as his symptoms were progressing. I’m not sure if he even understood and feel the guilt as I don’t know how voluntary it was. I have to give myself grace as you should too because we are doing the best we can with what we have. I pray for every parent here that we find the guidance and courage to do what is best and a cure for this horrible disease.

rosyd · June 7, 2022, 8:40pm

I’m sorry you’re going through this; I’m familiar with the feeling of ‘being mentally paralyzed’, I really was going through the motions without being able to function. My son started to have mental health issues when he was 12-14 but diagnosed at 19, he’s about to be 49 in the next couple of weeks. Same scenario; in fact an injection was due last May 22 but since he didn’t want it he called 911 to avoid it and he went to the hospital willingly, he got the injection after he was talked to into it as his best option and we had my daughter to administer it. Again, for the hundredth time he’s refusing to go as an outpatient after he agreed!!! We’ll they want to help him and sent a social worker home but he was so upset and he didn’t accept the help he needs. He brings back the experience of 30 years ago and same tune: meds don’t work, I’m not a good mother (I can live with that), I’m always lying, he’s starting to be paranoid, he doesn’t eat anything I prepare, he only needs to work and he’ll be better with ‘good food’! Blah blah blah! I know he’s anxious and I try to just listen but now we’re on the same situation as you are: do we let him leave (of course we’re not stopping him from leaving) and see how far down he gets? We know he’s been banned from riding the bus. Hes been evicted from low housing apartments. We’re bracing ourselves for what’s next.
Hes doing well on Abilify but he feels better and he says meds don’t help but deteriorates very quickly!!!
Try to learn as much as you can about the illness, there’s so much to learn and the Family to Family NAMI classes help, they’re free of charge; the book from Dr. Xavier Amador, I’m Not Sick I Don’t Need Help! will help you to learn to communicate with him. With newer meds, therapy and support from you he might learn fast that he can be on his way to recovery. There’s somewhere in his brain that doesn’t make the connection, the same as with my son. There’s good stories of success, depends on him.
It really helps to try not to React. You’ll know when your son will have to be admitted to the hospital, you won’t have any other choice. And it’s ok no to know what you don’t know.
Hang in there. It’s a tough journey.
Hugs to you!

Mojoclay · June 8, 2022, 4:16pm

For his own safety and your sanity he should not have access to the car unless his in on his medication. ( this could also, “maybe” be a motivator for him to except help and take his medication)
God bless you and your family.

serenity · June 8, 2022, 9:46pm

He needs to be on meds, my son was taken to mental health court, by the hospital, because he refused his meds. From there he was in and out of hospitals, whenever he went off his meds…
Now he is on a shot he takes once a month and under the “ACT” team which will intervene if he stops his meds. Its a terrible sickness, but not easy for them easy…
Good luck!

art_fan31 · June 12, 2022, 4:49am

My mother was diagnosed with paranoid schizophrenia when she was in her mid twenties, she had to be hospitalized for two and a half years. She has had to remain on medication since then. She is now 83. Unfortunately the only thing that has made her life and care bearable is her medications and regular visits to the doctor. Medication when she was in different stages was heavier than other times, this was hard to see, when she is better meds can be reduced but never dropped or psychosis would follow. She has still had a full life with two children born before her diagnosis.
Medications have improved and now have fewer side effects than when she started taking them.

It is an illness just like any illness, and needs medication and hospitalizations when necessary. She was not in a frame of mind to understand or make decisions for herself so they had to be made for her. If drugs had too many side effects we went back to her doctor and her adjusted meds accordingly. If they were stopped she got further and further away from reality and she relapsed and sometimes had to be hospitalized again.

These are things I have noticed help for daily living.

Avoiding eye contact a look can say a thousand words with this condition literally.

Don’t acknowledge or denie when strange things are said, this reduces frustrating the person. Don’t take it personally. Go on with what you are doing don’t argue, ignore/distract or leave them alone. Wild accusations, delusions, hallucinations are a symptom of this condition that’s all and a sign that meds are not being taken or need to be adjusted or simply need more time to help. This is a long-term condition Don’t expect the person to get well in weeks or months it may take longer.

Find out triggers words subjects etc and avoid them. My mothers is no. Don’t tell her no, think if another way of putting it avoid the subject that leads to your disagreement.

Don’t change plans they can’t adjust very easily, or don’t tell them if it’s a maybe until you know what is happening. Routine and steady life is helpful. Don’t confuse with outside problems they don’t need to be involved with. It’s better not to tell them if something has to be done like a visit to the doctor too long in advance because it’s over thought of and they have time to change their minds about going.

Don’t overload with information on what’s going on around you. Internet, news, family news etc some to give an interest but not for too long. She gets confused and frustrated. Give quiet solitude if they want to be left alone, do it. Just hang around to be there for them in the house.

If they want something, do it for them or get it unless it is not good for them or out of pocket range. They seldom change their minds. Avoid an argument.

With my mom I don’t have anyone sitting directly opposite her, we sit side by side, because she starts looking at them and thinks too much about it. She thinks they know what she’s thinking and or saying things they are not. She still thinks someone on the radio is talking directly to her. I don’t get alarmed, I distract if I can or leave her alone depending on her mood.

I try not to get too upset about what is going on in her mind, because it’s normal for her and gets forgotten just as it comes into her mind. It can go on in a theme for months weeks and then be forgotten and replaced with another theme or delusion. It helps me be a better help to her. You have to stay grounded and physically and mentally well, this is a long-term condition. It’s is a symptom of the condition understand that.

On occasion I have to speak to the doctor seperatly with out her to update him on her condition and get advice. It is difficult to discuss someone in front of them obviously. But mostly he can see for himself with his questions to her.

It’s about responsibility I would say for your son if he is ill he needs you to get him treatment accordingly no matter how hard it is for both of you just like if it was any other illness. When he is better understand that it’s because of the meds (the correct ones and dosage that is, revisit those until they suit him) don’t stop the meds thinking you are better unless his doctor says. No meds no peace in my opinion. He won’t understand if he is in psychosis. So speak to his doctor and make arrangements accordingly.

When I am at the end of my tether I go back to the 60 tips for dealing with Mental Illness, it makes it easier to understand and clears emotion out of it. I think you can find it on this site. When you have problems read it again and again. It saved my mental health.

This is my experience only.

art_fan31 · June 12, 2022, 5:04am

Change the doctor if they don’t help, a properly trained phyciatrist is better.

rosyd · June 16, 2022, 3:47pm

I love the details and way you have explained how it is to deal with the sz mind. It’s the finest practical way to to the navigation with our loved ones. I thank you for the great reminder of how WE have to conduct ourselves with them and it should be with everyone else practically.

I love your sharing.

rosyd · June 16, 2022, 3:55pm

Excellent!!! I have learned little by little to do those things you have made a list of for us. Some things I learned from church since of course scriptures sometimes are like a sword and for some are offensive, others were taught at work in workshops. Everything for our gain and education.
Thank you so much for your post.

Lovemom · June 17, 2022, 3:28am

Thank you for sharing, well said

CanadianDaughter · August 12, 2022, 6:06pm

@Chong Good advice. We don’t have to find answers to all the problems, and our loved ones are capable of figuring some things out on their own. Positive well being and outlook and less stress are important, so don’t set expectations too high. Hospitalization can help.

CanadianDaughter · August 12, 2022, 6:15pm

Thank you for sharing, very helpful. My mom is 81.
Will look for the ‘60 tips for dealing with Mental Illness’.
Best wishes.

rosyd · August 13, 2022, 2:40am

Did you succeed in getting your son on court order meds? Our son has cross the line about 3 times and has been sent to the State mental health hospital but once he’s discharged he has stopped taking the meds and the judge at the court says practically: he’s done with us! I know how once he starts deteriorating it goes downhill and who in the right mind wants his loved one to get help until he has committed a crime or done something stupid? But the judge told me after I filled up the paperwork to try to get help to have him on court ordered meds that she couldn’t do anything about it!

It was really frustrating for me to get anywhere trying to get him help; to top it off last time he was at the hospital he just walked out because he really didn’t want to listen what he wanted to know in the first place so I went in to asked what happened and the nurse said they can’t help anyone that doesn’t want help and is not psychotic! He’s delusional and can be hallucinating but he’s not psychotic!

We’ve been many years navigating this illness and for the last five years there’s nothing but walls that are hard to climb.

If you succeeded in getting your son’s meds court ordered how did you do it?

hope · August 14, 2022, 2:41pm

Hi @rosyd

I never did succeed on getting my son on court ordered meds.

His psychiatrist said he had a relationship with several judges who would take his advice to place a patient on court ordered meds, we were located rurally and he didn’t have any connections in our county.

We tried to record our son to try to capture him threatening us - but it never happened. He never threatened us or himself.

I guess for “psychotic” that particular nurse wanted a “bigger show”. Years ago we had a family on the forum whose family member was sleeping outside in freezing weather - they had trouble interesting the local authorities in helping them - even though their family member was clearly psychotic and placing himself in danger.

My son would have been able to put up a pretty good case in court. He regularly takes meds twice a day for a physical health condition.

rosyd · August 14, 2022, 10:35pm

Dear hope, thank you for your reply; the challenge for us continues and is the same for our loved ones: ‘we are the problem’ according to him

One day at a time.

Our mental health care needs improvement from hospitals to court system, especially for those who are more resistant to treatment.