Family and Caregiver Schizophrenia Discussion Forum

Caregiver as target of persecutory delusions

My husband, whose family has a history of schizophrenia, began developing symptoms a few years ago as a middle-aged professional. It took quite a bit of time, but with help from his family, I was able to get him to see a psychiatrist and a psychologist and he recovered reasonably well (I.e. no real insight and still harbored some ideas that he’d been plotted against but was able to return to work and resume friendships and his life again with no one outside our immediate families any the wiser). He’d developed some paranoia about me near the end of this period but was able to let it go and for the past five years, things had been increasingly good and our relationship, which has always been good, felt incredibly solid.

He’d been started on Abilify and responded well to 10 mg but it made him a bit sluggish and in talking with his family, it seemed likely he’d had some symptoms in college (perhaps to a lesser degree) that were never identified as such. Eventually, he moved back home for a few years and was able to complete college and also graduate school with no treatment other than family support. Because of this and also in response to his preference to not take medication if possible (he was compliant but mostly to please me, I think), we started a very long and slow taper that seemed to be working. He’d been on an incredibly minimal (1mg) dose of Abilify plus 5mg Lexapro for a couple of years when some minor tongue movements began to worsen last January and it was clear he was developing TD.

He stopped the Abilify in late January with his doctor’s approval (we’d been planning to wait until summer when he had a pre-planned sabbatical from work) but had to move up the time table slightly due to the side effect concerns.

All seemed to be going well until early May, when his paranoia came roaring back, including paranoia about me. He made it through to the sabbatical but has not socialized since early May when he cut off all contact with everyone except his family (who live out of the area) and myself. Although he still trusts his family, which is good, his paranoia of me has continued and is probably worsening.

I do understand intellectually that it is mainly because he is struggling with odd feelings and because I am the only one he still interacts with in our area (it seems to be getting harder and harder for him to even leave the house to check the mail etc.), so of course he attributes anything uncomfortable to me. However, it is challenging to live with and I am starting to feel as if I might come apart. Because he is frequently angry with me, I find myself trying to anticipate and avoid anything that might set him off, which of course is increasing difficult as the relapse continues. I have gotten him to go to his psychiatrist four times since I became worried in mid-May but apart from admitting to sleep issues (he’s now taking 50 mg trazadone at night, which does seem to help), he hadn’t been willing to discuss anything else. The psychiatrist does understand the situation, but can’t do much else at present.

The hardest part of this for me, of course, is dealing with the paranoia about my intentions. And as I know others here will understand, doing this all in a stressed and sleep deprived state having had to cut off most social contact (he believes our friends are working against him) and while trying to do what I can to help him while working full time.

He scheduled a trip to see his family without telling me, and although I found myself sobbing uncontrollably quite often in the past few days, it also has been incredibly blissful to be able to come home to a peaceful living space where I can open and close windows, turn on the tv or listen to music, and eat what I want without worrying that my actions are being taken as evidence that I am monitoring his moves or plotting to harm him or his family etc.

This situation has been feeling increasingly unbearable. I’d love to move out, but we have been together for 24 years, I love him deeply, and I am quite fearful as to what might happen should I move out so that he had no one at all to distract him at least a little from whatever inner demons he is facing. And I do think that at a certain level, his paranoia about me reflects an inner worry that he is not good enough for me and that I might leave him.

What can I do to cope better and how should I respond when he tells me he is afraid I might use things he has told me to try to harm his family or asks me why I sometimes say “weird” things when we are watching tv (I.e. his own auditory hallucinations) ?

I love Amador ‘s book but I guess it’s hard for me to be curious about his experience when it involves paranoia about me, which makes me feel quite anxious.

@Itsastruggle Understandably, it is very hard to separate the illness from the person especially when the illness has caused the person to target you for things that are not true. I encourage you to find a support group specific to serious mental illness such as NAMI.org. (National Alliance on Mental Illness) and if possible take their no-cost Family to Family class. Learn as much as you can about this illness. A good book for this is “Surviving Schizophrenia; A Family Manual”. You should always do what you need to for your own safety, but I am a firm believer that there is hope that this illness CAN be managed. Have you tried using LEAP as explained in Dr. Amador’s book?

I need to. He rarely opens up to me because he is paranoid about me, so I don’t have many opportunities. And when they’ve come, it’s tended to be the middle of the night when I’m not at my sharpest. And then it’s about me and I just freeze up.

Maybe I need to mentally practice a little so the basic procedure is more likely to kick in when I need it? I think my own anxiety is the issue. I don’t want to make things worse and whenever I’m in doubt, I tend to hold back.

But I know it is agonizing for him to not feel he can trust me and I’d like to do what I can to help him not feel so alone. We are both pretty miserable right now.

I applaud you for trying. Yes, it is hard and the opportunities are often limited. In my situation, I was convicted to try this and I was ready, at least with the “L” part(!), when an opportunity first occurred, and I was amazed. It created an open door. It has been over a year and I have to keep reminding myself to use this. It is helpful in other situations (with other persons), as well! I think that even if it doesn’t work the first time with our loved one with SMI, we can try again and again and eventually it WILL have some positive effect.

Please know that you are cared about and you can share your concerns and struggle on this forum. I hope you can find a local support group, also.

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Thank you! I appreciate your kind comments. It has been a very lonely journey and I am glad to have found my way to a place where others understand.

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Would you be comfortable sharing your experience of the first time you used LEAP? My husband is supposed to be back this weekend, and I’d like to be ready to be a better listener.

I have mentioned it elsewhere on this site but I don’t mind at all. To try to make it brief, we have been through @10 hospitalizations, plus EMS calls and emergency room visits, disappearance and living out of a car for months in a far away state, not knowing if he was dead or alive, residential treatment programs, ECT, denied admission by a hospital, and formal thought disorder. In the latter part of this during a 3 month hospitalization, after an ECT treatment and he was minimally responsive and sitting in a wheelchair, I gave him a back rub and massaged his feet, as I often did. I then asked him about his feelings about all that was going on (the treatment that he was getting, etc.). I told him that what he thought was important to me. His demeanor immediately changed and he looked at me square in the face and said, “Really?” After that, I tried to make sure at opportune moments that I let him know what HE thinks is important (and I ask him), even if we have differing ideas about taking medication, for example. It is a long story, but he has been med-compliant for over a year and he is very stable after a switch to Clozapine, lives in an apartment in a group home setting with some minimal oversight, has recently applied for a part-time job, and just agreed to go to a support group with me for the first time.

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What a wonderful story, hope4us. Thank you so much for sharing it.

Thank you. It makes me cry when I think about it! But this is why I try hard to help others. How are you doing?

Well, my husband continues to slowly decompensate and he is once again entirely house bound. And his surveillance fears are increasing, which is hard as the weather has been very hot and he is anxious about opening the windows at night to cool things down.

On the positive side, I have been using LEAP (mostly empathizing, as he is quite paranoid and does not want to share).

I do think it is helping with our relationship. He is still paranoid about me and things are nowhere near normal. But we are both a bit more relaxed with each other and can even joke a little at times.

I’ve also started doing things on my own again, and he has been supportive of this so far, which I appreciate. And he has been letting me open the bedroom windows, which I appreciate as well.

So I am doing a bit better, thanks in part to you and others in this forum.

Thanks for asking.

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You must lean to blow it off like it never happens, when he rambles about you simply say: “no, not me” and thats it, go do something, walk away or say: let me read in peace, watch TV" ignore it all like its not happening… it will get easy to do and even laugh about it…

Thanks, GSSP. I admire your ability to take things in stride and with a sense of humor. I hope I can get there!

I came across this video recently and thought it very good. “How to Talk to a Delusional Person”

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Overall it’s a good video. I think he overemphasizes how delusions can lead to violence and feeds into a false narrative that the SMI are more violent than others. It’s actually less once you take substance abuse out of the equation. Avolition is a great equalizer, as many delusional people can’t get it together enough to act on things they believe. I agree it’s a possibility, but there will be generally a long escalation path to get to the point of overcoming the inertia of avolition.

A few points from an insider view:

1.) Delusional people want to tell their story. It’s very lonely and frustrating when people blow you off or contradict you. Their delusions are interesting and all consuming to them. His model of acting like a reporter is spot-on. That’s what you want to do. Treat them with respect and an authority on the subject, but remain objectively neutral.
2.). Listen and follow all details. Try to follow the ‘logic’ and events described. Nobody likes a reporter who gets the story wrong. They won’t trust them, because they feel they will misquote or mis represent their position. If you don’t understand something, ask neutral questions and say you are just trying to make sure you understand. It plays into the subject’s ego. If you get things ‘wrong’, apologize for not following well enough and let them set the record ‘straight’.
3.). Realize that outside of their personal delusional subjects, thinking may be quite reasonable. Don’t assume delusional people can’t be logical outside the delusion. I found it amusing in the hospital there were often pervasive thoughts that other patient’s delusions were crazy, but theirs were sane. It can be more of a blind-spot. Kind of logic-free zone.
4.) Delusions tend to evolve and elaborate over time, so just because you think you understand it after a discussion, doesn’t mean the story hasn’t changed with more information and experiences. In my experience delusions are my brain’s best explanation to pervasive thoughts or hallucinations. Think of it like trying to make sense of a dream. Things seem logical while you are in them, but the dream’s narrative changes and evolves to fill plot-holes. I find I wake up and I’m still clinging to the logic of the dream, and once reality seeps in, I’m trying to figure out what in my life brought it on. The differences and evolutions can be diagnostic and can signal increasing stresses and worries that are important to the delusional person.

I think a good understanding how delusions work are a large part of how the LEAP process can be effective.

I use similar methods when trying to help people troubleshoot technical and scientific problems. Often times even ‘sane’ people get stuck because they make incorrect assumptions or think they ‘know’ something to be true but have made logical mistakes in data gathering. There’s also empathy that goes along with helping scientists with their frustration that things aren’t working out, and you team with them to decide what steps or tests to make on the next ‘experiment’.

It’s even possible to apply these methods to yourself if you are capable on insight and introspection. I think it’s a large part of the success of my recovery. I kinda stumbled onto these things myself, I keep thinking I should go to one of the seminars and compare notes with Dr. A.

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Thankyou so much for posting this @hope4us so very informative and helpful to my own situation, you are very thoughtful to others.

This is wonderful insight to have@Maggotbrane. I’m going to keep these notes to share with my family support group, if you don’t mind. Thank you so much for your devotion to helping us see and understand what is really going in with our loved ones. You are cared about, too!

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No problem @hope4us. I post these things to help caregivers better understand their loved ones. To speak for those who aren’t able to communicate what’s going on within. I worry sometimes that these insights aren’t universal, but I do what I can.

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Thankyou @Maggotbrane I’m slowly reading all your posts and am most appreciative you take the time to write and help us understand these broken brains of our loved ones we are sadly confronted with. I was guilty of being confrontational and not believing, but am so more sympathetic and have a better understanding since being part of what you tell me and other advise on here.

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