Anyone living with (or a carer for) someone with paranoid delusions, psychosis or schizophrenia? Just wondering what behaviour is 'normal' here

[Lattepowered]

Hi everyone, 

I've posted a few times on this forum, always so grateful for people's insights. Basically, my husband has been suffering from paranoid delusions for two years now. He believes there is a huge conspiracy to have him set up on fake charges, involving everyone from PIs and the police to my family, his colleagues, our friends, neighbours and strangers. He has zero insight he is unwell (or is deep in denial) and will not seek medical help, or even anonymous counselling. No one is trusted for him.

My key question is, for those who have experienced paranoid delusions first hand or have a loved one who suffers from them - is it normal for someone to speak about their delusions every single day? Or to constantly try to 'convince' their spouse the delusions are real, and get frustrated when they aren't believed? Sometimes he will even have paranoid rants that can last ages, and I'm on the receiving end, which is very stressful. Or do people with this condition tend to keep their fears and anxieties to themselves, so loved ones aren't drawn into the chaos? 

Reason I ask is because I feel like i'm close to breaking point, as the sole (usually unwilling) sounding board for my husband to vent about how he's being 'set up', 'disaster is near', 'you need to confront your family' etc. I realise he can't help it, and it feels entirely true to him...but how much am I meant to take? His delusions are the first thing i hear about when I wake up, and last thing at night. He messages me about the various people he's noticed 'spying on' or 'talking about' him pretty much every day. And weekends I dread now because he can't seem to restrain himself talking about this stuff, and our little kids are there. They probably don't understand about hacking, surveillance, being 'set up' etc, but it just feels so off. I just want us to enjoy time outdoors with the kids, without constant fear of when he'll start up, or notice a stranger at the park 'taking a photo of him'. 

I've said a heap of times that I'm at my saturation point, but I think he is finding harder and harder to contain his paranoid thoughts. He used to be able to give me a few days breather, but now it's a daily thread.

Do I have an extra hard case here, or is this a typical level of stress for a carer?! I'm 2 years in, don't think I can take much more if he continues to deny he has an illness and refuses to seek any help whatsoever. Honestly, how do people do this? It is so hard

[AuntGlow]

Hello @Lattepowered,

Thank you so much for sharing what you are going through with us. 

This all sounds so exhausting and overwhelming for you. 

It certainly seems like your partner is needing professional support, but I know that can be hard to encourage or inspire in someone if they are resistant/unaware of their needs - but it's definitely not impossible. 

I am curious to know what you have suggested or explored so far in terms of support for him?

I would also really like to know how you are and what your support network currently looks like?

This is a lot for one person to take on, so I want to make sure you are taken care of here too. 💛

I hope the community can offer further insight and lived experience, but in the meantime, I am happy to brainstorm some further support ideas with you.

Talk soon, 

AuntGlow. ✨

[Dimity]

Hello @Lattepowered I'm not sure if there's a universal normal for paranoia.

For me my delusions usually escalated over days rather than months.

Someone I knew who had longer term paranoia was an immigrant whose former depot injections weren't available in Australia at the time.  Her paranoia eventually led to her being on the streets and I think her brother secured police intervention and she was scheduled.  I understand that after that treatment and her psychiatrist prescribing the depot she had a good outcome.

For me I'm now diagnosed as Bipolar1 rather than Schizophrenic. 

[Lattepowered]

Hi @Dimity thank you for your reply. Yes, I bet every single experience of psychosis is different. I guess what I'm wondering is whether it's 'normal' for someone who is unwell with delusions to treat their partner as I'm being treated? He knows that I'm at saturation point (I tell him all the time) but he still talks 'at me' about his delusions daily and pressures me frequently that I need to 'confront' my mum (for her imagined role in his impending fictional arrest), I should give him 'dedicated time' to talk more about his fears, we need to see a defamation lawyer, I'll need to do xyz etc when he gets arrested/sectioned/whatever the delusion is that day. I just feel exhausted and burnt out from living this way, and I'm wondering if it's normal for carers to have to deal with unrelenting pressure like this? He won't let me talk about how I'm feeling in the house, because he'll say 'ssssh they are listening'. This basically silences me, so I can only listen to him, without right of response. 

Could I also ask your honest thoughts please, on whether you reckon someone in the depths of psychosis has capacity to realise they are unwell and seek help? I've heard different things: some people have said that if I leave the relationship in the hopes of him 'waking up' and getting help, it won't work, his delusions will still feel true to him. Other counsellors have said that hitting rock bottom can give someone the wakeup call they need, sadly. Others say the only real hope for change is to try and get him sectioned. I'm so confused about the best path forward. I have little kids so ive been trying to hold my family together, but he is totally unwilling to get help. I feel like he has me in a bit of a mental torture chamber right now, albeit unintentionally.

[Lattepowered]

Hi @AuntGlow thank you for your kind words. I feel like I've tried so hard these past 2 years to encourage him to get help, no success. He is adamant that his delusions are real, and one day I will see.

Because he only talks to me about them, my own mental health has taken a real hit, especially in recent months as it seems he can't go a day without talking to me about the delusions. We saw our closest friends on the weekend and of course they are 'in on it' too. It's really permeated our normal family life, we can't even take the kids to the park without the delusions popping up as we are in the car etc.

I feel like im losing the battle to keep things 'normal' for the kids. I just feel like im constantly hypervigilant, waiting for him to start talking delusions, even when he's in a phase of being 'normal'. Normal seems to be less and less, unfortunately. He can't go a day without telling me how terrified he is, his arrest will happen in x days time etc, but when I say 'what can we do about it', he gets defensive, says I think he is crazy, I dont love him etc.

OK, so what have I tried? Well, up til now I've always been gentle about how I reference his delusions, I call them 'fears'. Although I am thinking this is just treading water, at some point I need to express that I believe he is psychiatrically unwell. I've managed to get him to the GP in the past for referrals to psychologists, he never followed through. I've tried suggesting a non medical counsellor or anonymous help line, he won't do that. When he had particularly intense episodes last year, I actually left twice with the kids. I only stayed away for a few days, because it was so distressing, the kids obviously had to go back to school, plus he promised he would try harder not to dump all his stress on me, and that he'd get counselling (he didn't).

Sorry if I sound a bit defeated. I just don't know why it's so hard for him to realise that he needs help, for both of our sakes. I am at the point where I'm think of leaving again, which is the last thing I want to do. Seems unfair for the kids and I to have to leave our home, but what else can I do? It feels like we will just continue this way forever, and I worry the kids will eventually be impacted by all the paranoid talk.

[Dimity]

Hugs 🫂 @Lattepowered 

I can hear how distressing and difficult it is for you.

You ask "my honest thoughts".

Well... at present you're probably the one and only person your husband can share his fears with. It's  hard to say whether there's an element of seeking a reality check since he.seems so convinced of his persecution and impending doom but he trusts you. So many carers wouldn't have that connection with their loved one. It's a plus but also means you carry so much more load and see and hear so much more detail about what's troubling him.

I think you said you've already left a couple of times but it didn't provide that "wake-up call" the counsellors suggested. And sectioning him would be the realisation of his worst fears. 

Can you engineer any space where he'd feel safe talking about things? Because I wonder if you can actually tell him the dilemma you find yourself in. And the decisions you're facing.

It probably sounds weird but I think sometimes those of us with particular MH challenges are operating simultaneously on 2 or more different levels, where we're experiencing our deluded thinking but at the same time operating in everyday contexts and holding down jobs  until the schism becomes too great. Re-emerging from psychosis can feel similar. I know people talk about whether we have insight or not but I think it's more nuanced and complex, and it's not all or nothing. When I've been struggling with my thinking it's been easier to keep conversations fairly concrete rather than abstract, and to keep them simple rather than being offering a confusing range of choices. Sometimes the time of day makes a difference, and being well rested and relatively stress-free. 

So I guess if the relationship is strong enough and there's sufficient mutual trust I'd suggest opening up about your fears and asking his opinion about seeking help when maybe separation seems your only other alternative.  Rather than making a unilateral decision and presenting him with a fait accompli. And having the conversation before his condition deteriorates further. But maybe setting up safeguards like letting your family doctor know, and having the children cared for, and someone checking in on you. 

But hey that's just my take. It's just another option to consider.

[Lattepowered]

Hi @Dimity thank you for your thoughts and suggestions, it honestly means so much. Often the most useful guidance I've had along the way is from people with lived experience of psychosis.

What you said about people with psychosis living on 2 levels (until the schism becomes too great) is spot on what I see in my husband. The past 2 years he has been able to compartmentalise his illness mostly by reserving the 'panic talk' for me. He has been able to hold down a job and keep a roof over our kids heads. But I feel like in the past 2 months, he is deteriorating. It's more the illness there, than the man I know. He said he was shaking with fear at work the other day, which just isn't right. We had dinner with friends and normally he'd keep the conversation fun and 'normal', but he went off on a tangent about how his work is doing 'illegal things', 'photographing him' etc.

It came to a head the other night and I basically said I can't absorb any more of the stress, and want to leave. He said he wanted to save our marriage. He loosely agreed to 'do what I want' (ie see a doctor) if he isn't arrested by the conspiracy group in 12 days time. But then yesterday, when I reminded him of the plan we agreed to, he said that he has now 'heard' his colleagues say his 'arrest has been delayed 60 days'. My heart just sank because basically the delusions have morphed to evade treatment for another 60 days! At what point do you reckon I have to admit to myself that he's just not going to get help?

I feel like the illness is actually a bit of a master manipulator, it will do anything to keep its hold over my husband, and evade treatment. I even suggested he run his fears past chatgpt if humans feel too scary, he was closed to that too. It's almost inhumane to him to suffer indefinitely, and certainly unfair for me.

I just don't know what I'm doing wrong here, why i can't get him across the line with seeking help 

[Dimity]

Hello @Lattepowered .

I don't think you're doing anything wrong, far from it. You've walked with your husband every step of the way. It's very sad that details of his delusions morph and change eg re time frame but that's part of the illness  and will continue to happen. 

I can hear how distressing it is. Thankyou for being open to talking about it. I'd hate the conversation to end with the idea that police intervention and sectioning is the inevitable outcome  after some sort of major crisis. Your whole family deserves better and it's amazing you've been holding together.

• I wonder if it's time to talk to a CAT team about your options. Two years ago I spoke to a CAT team 2 or 3 times about my concerns about a loved one. In that case they didn't intervene as they fell back on the provisions of the mental health act re criteria for sectioning. But I understand that in my local health district, triage by a CAT team can be a gateway to referral fir community based services. Your GP would know more about this.

Also I believe there are self-help groups for people with psychotic disorders - I think one is called the hearing voices network. 

You need support yourself. The government based Carer Gateway provides many services for unpaid carers including counselling and emotional support. 

Sitting with you @Lattepowered . Good luck for today.

@tyme 

[AuntGlow]

Hello @Lattepowered, thank you so much for your reply and I am very sorry for getting back to you so late! I would really like to know how things have been going? Have there been any shifts and has he explored any supports?

It sounds like you have done so much to be there for him, protect the kids, and reach out to make sure you are getting as many answers as possible - that is a lot for one person to manage on top of everything else life throws at us. You're allowed to sound defeated. And you're allowed to feel and express anything that is coming up for you (especially here). 

How have you been caring for yourself over the past week or so? And what do you need most for you right now? 💛

[Lattepowered]

Hi @AuntGlow thanks so much for your message and for checking in on me. That means a lot, truly.

I used to call Sane's drop in phone counselling service once a week to help me cope with the ongoing stress of being a carer - as you'd know that service is on hiatus and I've been really struggling without the awesome counsellors to speak to when I'm at my lowest. I've accessed other general counselling, but I found the Sane counsellors really understand these complex mental health issues. I wish there was some way I could reconnect with them [edited by moderator] - I grew fond of those guys! They are legends.

You asked where things are at with my husband - for weeks he was talking about how he's 'heard' his colleagues say his arrest would happen on June 12. He had a huge big carry on at the park about how he had to resign urgently - I said he could if he wants, but we will literally not be able to feed the kids. Of course the 12th passed, nothing happened to him. Now, he's 'heard' colleagues say that his arrest has been postponed til late July/end of school holidays! He has loosely agreed to get help if this doesn't transpire. I'm not very confident he will follow through, as he's made heaps of promises to get help over the past 2 years, but hasn't.

Do you reckon I should just book him in to see a psychiatrist for August? Or a counsellor as a less 'scary' entry point? I think he needs meds, but seeing a psychiatrist may be a bit overwhelming? Maybe starting gradually with a counsellor may help, im not sure. I don't want to make an appointment then have him cancel, and stuff the psychiatrist or counsellor around.

Interestingly it's like his delusional mind keeps changing up the dates of his arrest to stop me from taking action or leaving. By making the date the end of school holidays, he kind of keeps me stuck in a holding pattern on the loose promise he'll get help (I've been advised by family to leave again during the upcoming school holidays, or even to try forcing medical help then). I feel like the delusions are currently calling all the shots.