Family and Caregiver Schizophrenia Discussion Forum

He is saying he needs to go away to get his soul back


#1

My son 25 on paliperidone depot 150mg once per month. He has no insight and been on this for 6 months on a community treatment order.
We had our consultant appointment this past Monday. It was decided though that the medication is doing a lot of good even though he has still some persecution delusions.

Several days he’s been saying he has to go away, take a pill to get his soul back, he says the police have now launched a mental health page on twitter and it’s them harassing him. I say why go looking at the local police twitter. He says they harass him, which they don’t, he’s never committed a crime. They have been involved when he absconded twice from hospital etc. They have always been nice and caring.
He also thinks it’s his religion they are against him , because of it.

I’m wondering if the meds could be encouraging these ruminating delusions, but then I think back to before meds (he refused to take meds for about a year) and before this he was quite agitated, animated and accused me of taking drugs and putting them in his food. All that has gone and we are much closer but when he says to not report him missing etc when he goes, and he,lol come back when he has his soul back.

He’s an educated guy and got his degree in 2014 , we never did get to cell though as he wouldn’t have any of it.

Anyway sorry for the rant. I get so confused and frustrated at times. He’s calm though that’s one huge bonus.


#2

Hello, I think the delusions come from the illness. The continual engagement with delusions comes from “lack of insight.” The delusions are usually the last symptom to go, if they do, according to something I read. People say DBT or CBT can be helpful. But I would ask the doctor whether they could be increased by the medication, just to make sure that is not contributing.

I would concerned if my family member were talking about leaving, for whatever reason, whether delusional or not. It’s really good that your son is calm. Calm will help him navigate these painful beliefs.

One of the main worries about delusions is that people with severe mental illness might follow them to try and find a solution for the extreme difficulties they are experiencing due to mental illness. Attributing problems to something else besides mental illness, they seek alternative solutions based on their belief systems and experiences (which may not be based in shared reality).

The problems your son is trying to solve are feeling harassed by police and feeling like he doesn’t have a soul. I wish there were a way to harness the intense need to problem solve to shared reality, but I cannot think of a way.

The calm maybe comes partially from medication?

If (I could tell that) it would not make things worse, I would ask my family member to tell his consultant or doctor the specific problems he is experiencing and the proposed solution.


#3

Thanks so much for taking the time to reply. I keep reminding myself the delusions were indeed there and worse before the meds so its not them completely causing the delusions which is helpful to me.

I have a feeling he is just saying this about going away and that he wont follow it through.

He doesnt want mental hearh services involved in our lives, or his . He complies bare minimum with his nurse.
This week for him has been stressfull as hes had pyschiatrist app, we have had a family therapy session (he doesnt take part.) And on monday we have a peer support worker coming to chat with him. He has finally agreed to meet him.


#4

I know you can’t reason with someone who has psychosis, but sometimes you can tell them things that will reassure them.

I was looking for a non-religious definition of a soul and found this:

“The soul is the self, the “I” that inhabits the body and acts through it. Without the soul, the body is like a light bulb without electricity, a computer without the software, a space suit with no astronaut inside.
With the introduction of the soul, the body acquires life, sight and hearing, thought and speech, intelligence and emotions, will and desire, personality and identity.”

Maybe you can use the “I think therefore I am” explanation with him? You could tell him you know he still has his soul because you can see it everyday when you talk to him, and that without it, he couldn’t think, or talk, or worry that his soul was stolen.

It’s an idea anyway, and I agree that he’ll probably talk about leaving, but not really leave. I would, however, make sure I had an up-to-date photo of him just in case.


#5

I have a lump in my throat, thank you for this.
It sort of makes sense, he feels empty, he feels he wasn’t who he was maybe?

I love the part about me telling him he does have his soul as I see it every day, that’s precious and it’s given me something I could say that’s “true” and perhaps reassuring to him.

Appreciate everything everyone contributes to help each other on here.


#6

Everyone needs to feel like they do their part or contribute to be truly happy.

That’s why we work, why we raise families, why we protest or advocate for change. Our family members who have a MI are no different. I struggle with finding a way for my son to feel like that short of having a job since he doesn’t want to volunteer anyway, but the other night he said that just helping with dinner or taking out the trash makes him feel useful.

Maybe you could find something that helps him feel less empty. If he got a degree and isn’t able to put it to use, I’m sure that’s very distressing for him. Do you think he’d volunteer anywhere? You’d have to find a supportive environment and the right kind of opportunity, but maybe if he could help someone else, even if it’s in a small way, he’d feel more like himself.

Again, just an idea. I’m full of them, but they rarely work for me.


#7

That’s good at least something makes your son feel useful, that’s positive for him and helpful to you.

Same here He is willing and offers to do little jobs around the house, I ask him the other day to carry the vacuum cleaner upstairs for me while I walked the dog, he volunteered to vacuum upstairs for me, when I came back I really noticed how well he had done it, much better than me as he took his time (which he has plenty of) and did it thoroughly. I even let him overhear me telling his dad on the phone.
He was enthusiastic about volunteering when he got out the hospital but he’s not right as enthusiastic any more.

Thanks and hope you and your son are doing good right now.


#8

I hope this helped your son I really do


#9

You’re right the delusions and hallucinations do come from the illness. But they are organically based not coming from a lack of insight.
There are many conditions that will create hallucination or delusions or both, porphyria, delirium tremors, mercury poisoning to name a few. No one tells those sufferers they have no insight. As we as ( biological ) parents have had an admittedly unknown at the time, part to play in our children’s suffering, if they lack insight it is likely it is a result of their upbringing - not their disease, How we ‘think about’ things,is not an option - for sz - they are under the influence of hallucinations and delusions for God’s sake!
Ok we are suffering to as parents but at least we have the option of ‘thinking’ - not something afforded our offspring when they are in the grip of their illness.


#10

When my daughters tells me the medication makes her feel worse I do my best to not rule that out. Its possible medication contributes to feel empty or unreal. Do you think maybe the medication could be either too high or not high enough.

I’ve also suggested to my daughter to volunteer at NAMI but she thinks everyone there is “crazy.” I like what @slw suggested about having your son help out with things around the house. It can help him feel like he’s part of something. My daughter when she is doing well enjoys cooking dinner and setting the table – very ordinary and simple things can help. Of course so much of this depends on how grounded my daughter is feeling.

Right this minute my daughter is sitting calmly downstairs knitting and talking to her children.

Are there any hobbies based on his interests you can introduce to him?

I have an online friend who was diagnosed with schizophrenia and she found poetry and art as her passion. She’s actually published a book on poetry and sells her artwork.


#11

I see you’re online now Molly - did you get a chance to look at Niacin the real story. My son continues to improve daily .


#12

kensmom, did you notice a little more psychosis during the first week or two? I apologize if you have already discussed this.


#13

Hi, I put “lack of insight” in quotation marks because I feel the same way you do about this phrase used by providers even though it has a somewhat different common meaning.

Many people who experience delusions and hallucinations (regardless of the cause) also notice that the delusions and hallucinations are not real.

I guess the technical term for the symptom “lack of insight” is anosognosia https://en.wikipedia.org/wiki/Anosognosia and, as you write, this symptom occurs with many different illnesses.

The reason I differentiate between the cause of delusions and the cause of continued engagement with delusions is this: a person experiencing delusions who understands that they are delusions is in a different space than someone who is experiencing delusions and/or hallucinations as reality.

I am speaking of “lack of insight” as the medical symptom anosognosia, not a lack of self-reflection or simple denial (as per the wikipedia article linked). There are people who experience delusions who understand that certain thoughts and ideas are delusions and can cope more readily due to this understanding. Without knowing/understanding/ insight/reflecting that paranoid delusions are not reality based, the beliefs become far more difficult to navigate. That’s all I was trying to write.

I think we basically agree with each other and I’m sorry that I am having a hard time communicating.

Really really good article: https://academic.oup.com/schizophreniabulletin/article/40/3/542/1905333/Self-disorders-and-Schizophrenia-A


#14

@Jane57 In my experience with my sz son at 25 and over the years since-he is 32 now (and forgive me if I have already mentioned this before) The meds aren’t the cause of ongoing delusions of persecution etc…those are classic symptoms of the illness itself, When my son finally got on the right meds it took at least a year to see the full benefits of it…over that year…we saw the voices diminishing, there were no more hallucinations, and the persecution thoughts got less and less with each passing month…I did have to keep my son away from the computer because there is no way to know how he will perceive what is being said there…it is too much for him to process while trying to recover…today he just refuses to use the computer voluntarily and I think deep down over the years he has just accepted that it is not for him…he does have me enter things, email something, check on emails or game scores or whatever he is interested in (he just leaves a note on my desk) and I will…as far as the soul thing, I think it is just his way of describing his feelings, my son had really unusual ways of doing that too. He often thought that the secret service would take him away to question him as a suspect in some unknown venture he never could explain. All of that and the voices -left him completely by the second year of steady medication…and stable, low stress living environment. Today there may be a very occasional “glitch” as I call it, I have ranted here before when it happens, but it is very short lived and the less attention and emotion I pay to it the quicker it passes, at most 2-3 days, 2 or 3 times a year. Compared to the nightmare beginnings -this is great and a happy victory for us. He is super close to me and so much so that I find ways now to get my alone time and my time with other adults I can relate to…I can do that now without much worry about leaving him home by himself. I haven’t left him overnight yet, the opportunity hasn’t arose, If it did though I think I would be willing to try one night away…I am sure at some point that might come up and when it does I will let you guys know how it went. These excruciatingly slow baby steps can go on for decades…but as a mother I can honestly say that so long as I see any kind of improvement each year I am okay with the progress at any speed. Because life today generally goes so unbelievably fast it is very hard for us to turn the speed down to an incredibly slow crawl when it comes to our loved ones’ sz recovery…but I am convinced that we must do that not just for our own sanity but to relieve our kids and loved ones of the stress of having to reach milestones they can’t even conceive of at times, and also to reassure them that whatever their limitations or perceptions are they aren’t disappointing us (so long as they stay with treatment) and we will never stop standing up for them and loving them no matter what.


#15

@Catherine. “.but I am convinced that we must do that not just for our own sanity but to relieve our kids and loved ones of the stress of having to reach milestones they can’t even conceive of at times, and also to reassure them that whatever their limitations or perceptions are they aren’t disappointing us (so long as they stay with treatment) and we will never stop standing up for them and loving them no matter what.”

This is so true Catherine. It’s taken me a long time to come to this conclusion.


#16

I don’t see that you have - anyway you have no need to apologize to me :slight_smile:
In answer do you mean the first two weeks of having niacin ? If so the answer is no not at all. Of course this occurred within the context of a mental hospital and he continues to have 400 mg of clozapine at night - making him lethargic in the mornings but he gets better as the day wears on and any anxiousness that occurs he takes extra niacin and that deals with it. This shows me that it is not the clozapine that is dealing with the voices, it’s the niacin. He has just helped me to prepare dinner - he came in to the kitchen without being asked and did all the vege prep. He has not retired to his room at all today Every day better and better, He just came in and tested the vegs. Taking ownership LOL I always said watching the food channel would come to some use!


#17

@KensMum. - years ago my daughter tried niacin but it didn’t work. I left no stone unturned in seeking help for my daughter including niacin, dietary changes, vitamins, etc, etc and other treatment modalities. If it works for your child great but it did nothing for my daughter.


#18

Molly when you say your daughter tried niacin do you mean that she used the remedy herself or with your supervision ? Why I ask is because I know my son was , and is still in no state to take the niacin and vitiC on his own. He also needs positive feedback, which I give him, commenting on things he does with praise and every night before he goes to bed I ask how was your day? and give praise and say another day towards wellness.

I have also seen a lot of people say that they have tried niacin but couldn’t tolerate the flush. I now take the straight stuff myself, only 500gm a day but it gave me a hell of a flush to begin with. Now about 2 weeks in I tolerate it fine. Flush is greatly reduced and of course the benefits are great. I am of the opinion that families of szs need to have a look at themselves ( after reading Dr Hoffer’s work) It seem there are a spectrum of conditions that stem from the genes we carry. I started to use niacin for arthritis. and have shown some improvement after only a few weeks however much more importantly I think that Ken feels less of an outcast from his family if I can take some niacin too and it certainly isn’t going to do me any harm.


#19

Ken’s mom thank you that is fantastic news and I hope he continues to improve. We have also have seen improvement on vitamins but then lack of medication adherence becomes a cycle downward and a slow time catching up to the previous baseline and unfortunately that’s where were at right now.
Our son had blood, urine and hair analysis done a couple years ago but each time we get about mid-way tritration in the therapy, he has had to go to the hospital.


#20

Deleting because someone else had a much better response.