Family and Caregiver Schizophrenia Discussion Forum

What can I do to reach out to my very delusional son who doesn't want to talk


#1

I can see our 25 year old son starting to go down the crisis hole again. He lives with us and has medication which but even with it, he’s always so ill he doesn’t connect with any reality. This is hell and I don’t know how to get all of us out of it.

What works when someone is so mentally ill. I’ve read about 40 books but they primarily assume the person will listen or speak to you. Our son is just isolating himself and writing endless rants about his delusions.

Your thoughts?


#2

@Momwithbeautifulson – It sounds like your son, like mine (27 yrs old), is not properly medicated. It is so frustrating trying to get them there, when they don’t want to.

Last week when I saw my son he was walking on his tiptoes and carrying a children’s umbrella open and over his head. It was a beautiful day and not raining. He’s off-the-charts delusional but will not listen to reason when I try to tell him he is not properly medicated.

I wish I had some great advice for you on this one but I’m in the same boat. Maybe one of these days our sons will become more mature and will listen to reason. :pray:


#3

I goto a community mental health center and work closely with an arnp. If I was like that I would want to go see her for treatment and her opinions on if I should be hospitalized. The longer the psychosis lasts the more brain damage is done is my understanding.


#4

I think there is research supporting that recurring psychosis can result in brain damage. However, like your son, mine does not have insight into his illness so is not motivated to seek help for psychosis.

It is very difficult to stand by while this happens, and also difficult to reach our loved ones thru this. I can only make small attempts to connect each day, and try to keep presenting an encouraging and supportive face even if I might be crying inside.

@NiceHat, did you have a time when you did not have insight into your illness? If so, how did you come to a point of understanding that you have schizophrenia and begin to see the difference between delusions and reality?


#5

Great question Vallpen


#6

When my bank account ran dry for one thing. It amazes me that you parents feed and care for such a delusional mess.

Another thing is that my family involuntarily committed me, and not only did I pay the bills myself, but the nurses at the community health center reached out to me, cared more than my daughters did, my one nurse held my hand for some time in the office.

Also, I’m 50 years old, I have a masters degree. I enjoyed working and I can’t anymore. I live alone and care for myself, I can’t blame anyone else for shortages of cash or food. If I had mommy and daddy crying in the next room yet paying all the bills, the world would seem different to me, sorry to be so blunt. Enabling the delusional person isn’t the answer. The longer the psychosis lasts, the more damage to the brain is done.


#7

Other key events

I went to the nimh for a sz study, I have psychosis nos, not sz
I also went to the mayo clinic

If you go to either or both of those places, talk to the best doctors on earth, you learn that you actually do have a problem. If you sit in your local psych ward they force meds on you but don’t talk to you about what a psychosis really is.


#8

@Momwithbeautifulson My first thought was that his medicine is not the correct one or the dosage of it is not at a therapeutic level…I am not a doctor but watching my son go through so many meds (at various doses) and watching his ever changing or stagnating behaviors kept me on my toes…sometimes I would have to bring him back to the doctor in a few days to report what was happening or not happening and sometimes it could wait until the next appointment but the doctors (and my) goal was to improve the symptoms and keep improving them aggressively until he was able to remain lucid and stable-in the beginning we were in the office every week. Just handing a medicine out and assuming the job is done except for refills is not okay and a lot of doctors are so overwhelmed with their over abundance of clients that they do just that. We have to constantly report and observe and document what we see so they have an accurate picture of what is happening at home. We (all of us caretakers/moms) have to make sure that the doctor our kids see is a dedicated one and that is not always easy in this day and age. Also my son was diagnosed with Disorganized Schizophrenia which is characterized with an inability to speak, organize thoughts or understand speech when the illness is active --if he tried to talk his sentence would come out all mixed up and so he began to just not talk at all and like your son my son wrote volumes of nonsense and sometimes frightening delusions…Maybe since your son is still having delusions that is the entire reason he can’t communicate effectively or at all. If his delusions are brought under control with the right medicines at the right doses he will be better. It takes time and effort to find the right formula. Until he is better the medicines have to be critically assessed almost daily or at least they did with my son…when you finally see your son respond positively to the right treatment…you will be as overjoyed as I was and am. I wish you both the very best.


#9

I agree with what you said. As long as the delusions are active, the patient must go back to their health care provider for more help. I had a huge breakthrough when I did get a new nurse practitioner for a short period of time who provided a fresh perspective. But, That’s what I did, on my own. I don’t have my young daughters all that involved. Since I understand that brain damage can happen the longer the psychosis lasts, I was motivated on my own to seek out help. But then I’m paying my own bills, cooking my own food.


#10

@NiceHat, I am wondering at what point in your life you developed psychosis?

Many of us have young adult children who never had the opportunity to complete school or begin careers, and whose illness is severe - I am sure you are aware that there are many people who have treatment resistant MI and do not recover from schizophrenia to the point of being able to attend school or hold a job. I think most of the parents on this site come here because they have reached a point of despair.

I fear you are suggesting to some of us that ‘tough love’ is what our family members need, and that if we would just stop supporting them that they would toughen up and figure out this illness and get the help they need. Unfortunately, the truth in some cases is that the person would instead not care for themselves and place themselves in dangerous situations or end up incarcerated for crimes.


#11

I’m saying that the longer the psychosis lasts, the more damage is done. I believe that is true, so leaving the psychosis go at the home really isn’t a good solution (continued support while the psychosis continues) .

I’d recommend immediately going back to a provider for help.

In my state 2 adults can take the psychotic adult to the hospital for treatment. (Or request the police to do so ). This is what my family and I do. My daughters are young adults.

It’s not tough love, it’s common sense to me, I’m one of these patients trying to stay well.


#12

I agree completely that the best response to illness is quick treatment. It may or may not be easy to make it happen though. In my experience, hospitals have pretty strict criteria for admitting and holding patients, and release them if the patient no longer meets the criteria. Again, without insight, the patient will more often than not terminate treatment after hospital release. Even as a guardian, when my son has been ill, there is only so much I can do to get my son admitted and to keep him hospitalized. There is an extremely long waiting list to get admission to the state facility where I live where long term admission might be possible, and most of those beds go to people coming out of legal institutions.

I was responding more to the following statements that you made -

You seem to suggest that if our family member does not comply with treatment, the ‘common sense’ approach is to stop feeding and housing them.

I am so impressed by anyone who faces up to this illness, acknowledges it, and comes to grips with it.


#13

There has to be consequences. I am saying that if you just feed and care for a psychotic person and the psychosis continues the brain just ‘goes there’ again more easily the next time.

I don’t have that luxury of someone feeding my psychosis so I learned to care for myself better faster.


#14

I’m glad you are able to do that!


#15

Hi NiceHat,

Many of our children became sick very young. My son was 15. He has a psychotic NOS diagnosis just like you, and at one time, I think that was correct. He had insight and he would take his meds, accept treatment, etc. He has a wonderful doctor who would work with us so that we could change dosages or meds quickly and keep him at home.

Now, my son is 27. Over the past year, I’ve seen lots of changes in him, so I think his disease is progressing. His insight is now gone, and I believe he now has a symptom called Anosognosia.

This is where he can’t see that he has a problem no matter how bizarre his delusions are. People with this condition are not in denial, they’re not being stubborn, they have a real problem in their brain that means they CAN’T see their symptoms. No amount of logic will change that, so in this case, talking about it to specialists wouldn’t necessarily help.

At this point, we’re doing whatever we can to keep him on his meds, retain his trust, and keep him safe until the right treatment kicks in.

I get your point, but “mommy & daddy sniveling in the next room” is an extremely poor choice of words.
So is enabling.

That implies that we’re weak, and that we’re not fighting, and that our children (or other family members) have chosen this life in some way. I don’t think that’s true at all. He wants to be able to work, he wants more than anything to move out and be independent. In fact, that desire is what’s fueling his current delusions.

I think that the parents here are incredibly brave, that we’ll go to any lengths that we can to help our kids, and I, personally, think it’s amazing that my son is even alive considering the things he goes through. If it was me, maybe I wouldn’t be. I think you’re brave too to face your illness head on like you have.

I’m not trying to give you a hard time, just give you a peak at the other side.

I hope you continue to have insight into your illness and never become resistant to accepting treatment.Unfortunately, you are the exception. Many people who don’t have the support we give our children end up homeless, without treatment, and living a horrible life. I don’t want that for my son - to be honest, I’d rather see him dead than live out his life like that. So, if that’s enabling, then I guess I am.


#16

Thread dereailed, but to the OP:

Our family members suffering from these severe illnesses need ongoing medical treatment, excellent therapy, and numerous psychosocial supports.

That is what works.

Hopefully, somehow you can get your son to the doctor or hospital.


#17

I wonder if the coping skills that an older onset person has vs. a younger person makes a big difference. I suspect it might. I’m not sure how old NiceHat was when she first came down with psychosis, but the average age for females is quite a bit older than for males - typically after age 35 - vs. about 17 to 20 for males.

If you’re 35 when you have psychosis - you have many years of functioning pretty well and have learned many life skills and have lived independently for many years. A person who develops it while still in high school or just after - does not have that many years of skills and education to fall back on - so the coping without support may be impossible.


#18

I think I quickly sought out answers to my health issues and went to both the NIMH schizophrenia study the mayo clinic. Yes I’m older and wiser than a teenager or a younger person in their 20s.

But my last psychosis, beginning to end, lasted 6 months. Start to finish, in patient and outpatient time combined.

I understand the frustration on both inpatient and outpatient treatment, I could not get myself admitted to the hospital even this last time.

I am on my own crusade to learn as much as I can to prevent it from happening in the first place since it does , psychotic symptoms, last so long. I have word salad and delusions, no voices or hallucinations.


#19

Catherine that must be very sad to watch your son trying to communicate but not being able to. Do you mind me asking what your son is taking that is working so well for him?


#20

@Mom2 I don’t mind any questions related to my son’s illness. My son takes Clozaril 125 mg twice a day…It use to be a higher dose (150 mg twice a day) with Congentin and Zoloft added but he has done so well for so long the last doctor he had said it would be okay to try to wean him down off of some of the “extra” support meds a little at a time and see how he did -he has done really well (it has been about 2 years now that he has been just on the lower dose Clozaril alone. The idea was not to jeopardize his stability but to see if he could remain stable on less so as to minimize the long term effects on his body. So far so good. Today I mainly see his negative symptoms. the lack of motivation, confusion and forgetfulness.