Family and Caregiver Schizophrenia Discussion Forum

So confusing at times


#1

Am I alone, ? Is this usual?
Son 25 is on a community treatment order, he is in process of changing depot, from paliperidone to zuclopenthixol . He never has been compliant. To sum it all up after a year on depot, it’s enabled us to live together , son has affection for me, he is calmer , slower, much slower in actions and in his speech (unless he is showing his frustration about mental health staff.
He come out recently what he should have by now, he says I should have my car back, I should have a wife, a job, kids. So he “knows” but he says it’s having had his soul removed and replaced by soul of a bad person that’s the reason he can’t have all of this.

I struggle to process how for instance , we were parked up in the car on a quite busy road yesterday we live in (uk) and he spoke about how clever all the infrastructure was in the country, he spoke about how it all works together , roads, companies etc , not for long as we were interrupted. So he says that, quite a normal observation and sensible view of it.

Fast forward I think 2 hours, he looks forward to food and it was after he had a treat of Chinese food. He started saying he he is going to be “killed”. He says last year he used his card in a machine in Burger King , and it was him being tricked into paying for a ticket to Afghanistan (Kabul) specifically he said.

It breaks my heart at times that he is so sad and thinks it’s because his soul was taken.I posted about that a while ago and said a great thing someone suggested. I said I see his soul, it’s in his smile, his laugh (which he does at times now)

The dr rang me last week with a link to a website for us, his parents, it’s called react and anyone can sign up. It’s a “tool box” for the carer.
I said to dr that at times I feel like not fighting him and saying, come off to all like you want and see how it affects you!! The dr who is lovely to him and us said he thought he would get worse. That was actually reassuring to hear strangely as it made me a bit stronger in him being made to take the meds.

Do others on here sometimes struggle with the “is he ill” or isn’t he, I am annoyed with myself for being like this.
If you have gotten this far then thank you for reading and tell me what you think please.


#2

I have gone through the same experience of wondering how ill my family member is.

Now that our family member has been living with effective treatment for three months after eight months of not good, but calming treatment, I realize how incredibly ill my family member was. While family member was extremely ill, I looked for every moment of connection and normalcy, of which there were many, many, many except during extreme episodes.

Maybe when you think your son might not be ill, you are seeing him, who he really is. He truly is present all the time, just harder (or impossible) to see when he is very symptomatic.

The doctor is probably right; good for you for asking. Maybe you can let the doctor know how hard it is to try and influence family member’s choices and that you would rather not be in that role, but that you plan to do what the doctor requests of you in order to help your son’s treatment.

It’s really hard to know whether we are making the right choices, especially when our decisions and actions do not align with the preferences of the person who is actually ill.

I think it’s good to ask questions and be aware of ourselves and our dilemmas.


#3

When it was first suggested to us that our son had scz,we weren’t sure why the person thought that was our situation.

After a few weeks of actual pondering, we sat down with our other son and looked at the symptoms. We came away inconclusive.

“Was he hearing voices?” was our biggest question. Looking back its totally ridiculous that we didn’t realize what we were calling “auditory hallucinations” were voices. He was just confabulating and attributing them to anyone who was nearby. I just realized the confabulation part recently. His voices weren’t different than other sufferers, he was just explaining them to himself. We started looking for signs of “voices” and we found them, then we knew for sure, but we still went to a scz psychiatrist for a consultation to be extra sure.

Like my MIL who had vascular dementia, he can be lucid one moment and not lucid the next. It was easier with her because she would go back and forth constantly. My son will stay in lucidity longer than she could.

He can appear totally normal to people at times, less frequently as he progresses…


#4

I have the same experience with my son’s visual hallucinations.

I don’t think he had them at first. He was mostly paranoid & delusional, and he would say he had random hallucinations, but he always recognized them for what they were. This was when he had insight.

Now, he describes hallucinations as seeing through other people’s heads.
It didn’t click for me until he told me one day he say through the cat’s head. I asked him what that was like, and he said he was looking away from the TV and the computer, but he could still see a screen. He couldn’t figure it out, so he looked around & the cat was on the bed - looking in the direction of the TV. So, he reasoned that he must have been seeing what the cat saw.

If you get to a place you can discuss things a little bit, in a calm way, that doesn’t trigger them, it’s amazing how much logic is in their confabulations. My son has a lot of magical thinking mixed in too, but they really are pretty smart - and imaginative.

My son was diagnosed with learning disabilities when he was a kid, and there’s a lot of testing involved.

He scored off the charts on coming up with unique solutions to unusual problems, which I loved. It means he’s creative & imaginative & smart. To me, it meant if it came down to surviving somewhere, he could improvise as needed.

But, this is what we got instead. I’m still glad he has a creative mind.


#5

Well said.
20202020202020202020


#6

Thank you, I too relate and you made sense to me, my MIL suffered vascular dementia too, she had TIA,s over a ten year period so,we seen her on a slow the rapid decline and as you say there are similarities with our kids to that but then huge differences also.


#7

Thank you, we on this site have so many similarities and for me it’s good to hear your situation too.
You all on here seem to be able to convey all this so much better than I can.


#8

Also can I ask what I have said about my son do you feel this is common?
I read people’s situations and experiences on here but we can’t actually “see” or hear what their relatives are like, sometimes it sounds so much more sad/ difficult than my situation but then I look back at what I could have written in the last few years before treatment and see things different . I guess sometimes we get used to actually living it and a safety mechanism kicks in for our own survival.


#9

Yes he is a very special person your son and that’s what he was meant to be whatever. It’s a good reassuring way of looking at it slw.


#10

Jeb has described people approaching him on the golf course. Someone once said if we would ask him for details when we suspect he’s had a visual hallucination, he wouldn’t be able to provide many.

He said a man came up to him on a green and made casual conversation. When I asked where the man had come from, he didn’t know, when I asked, where did he go after talking to you, he didn’t know.

I can tell when he’s highly psychotic that he isn’t seeing real things. He moves his eyes watching things that aren’t there. When I have to talk to him at these times I can see him looking for me. He gets angry, THEN its like he has busted through it and he can see me.

But of course, the anger becomes the issue at that point.

I can stay calm with him, but his dad can’t, when you have them both angry, its like there’s a “crazy train” driving through our life and someone else has jumped on.


#11

hereandhere, I can’t find the response you sent me with advice about state laws, can you resend?


#12

Yes, I am not sure, but I think it might be common for people with psychotic disorders to have a normal conversation and then start talking about their delusions within a couple of hours.


#13

Yes I’ve found that, he has said that he has seen my parents neighbour on his bus (presumably to spy on him). They live 150 miles away and I know they have never visited our town.
I asked him more details about them , and it was just “don’t know but it just is” sometimes though he can give a reason , which of course is a bizarre one, like it’s cos his soul,was taken and he was given part of a killer souls, and he is going to be gang ***** by men. These fixed thoughts have remained strong for a while.


#14

That’s why his dad/my husband doesn’t live with us right now.
He’s roughing it in a very nice camper out on the 50 acres we own in the next county out in the country.

All his hunting dogs are out there, so he was going there every day anyway, so it wasn’t such a stretch.

If it wasn’t for that, I have no doubt something very bad would have happened by now.


#15

So sad isnt it that this illness not only destroys the sick person but it splits families and marriages etc,
Hubby said to me today, its me or him, I know he didnt mean it,
son is now blaming hubby as two weeks ago they got the train to see our local football team at wembley and on way back they both drank a few on the train, son drank too much and blamed hubby, saying that he set him up and son was worried that he had said some incriminating things to a random man on train, which he hadn’t of course.


#16

Most people in the UK have a more liberal attitude towards drinking than those of us in the US.
Not that you guys drink more - it’s just a little different culturally.

But, now your husband has a great reason to stop your son from drinking.

By the way, we’re not exactly split. We already had plans to put a camper out there so he didn’t have to drive back home all the time or stay with his neighbor friend out there (although the neighbor is lonely & would have been tickled pink if my husband just moved on in - he still tries to get him to spend the night all the time).

It just turned into a 6-night a week thing instead of a 3 to 4 night a week thing.

However, to be completely honest, my husband is pretty high maintenance. We talk a lot on the phone, but I certainly don’t miss all the “can you get me this?” or “where did I leave that?” - When my son is doing well, it’s incredibly peaceful at home with just the two of us since we’re both naturally quiet & my husband is naturally loud.


#17

Yes definitely agree with the culture towards alcohol. Hubby and I visit USA often and asked for I’d most times , I’m not really a drinker though.

Also here you can drink at 18 where is the US it’s 21 of course.
In the Uk if you “look” under 25 you can be asked for I’d to prove you are 18 or over .

I’m glad things are peaceful for you when your son is calm.
Ps I’m taking a low dose of sertraline anti depressant and it helps keep the edge of things, well I think so anyway. Hang in there slw.


#18

When we were building the garage apartment, my son kept saying he would never move out there. I just ignored him, I knew he would once he saw it completed. He was worried we were building him something small and not very nice.

My husband would get all worried and ask “what if he doesn’t move out there, what if this is all a waste of money?” It would be nice if my husband could stop himself from making everything more stressful for me.

I finally told my husband “Stop worrying, someone is moving out there. ONE, of the three of us, is moving out there. It might be ME.”


#19

@hope - I think we share the same family, lol.


#20

Hope, my husband and I are thinking about doing the same thing. How did your son do once the garage apartment was completed and he had to physically move out there?