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.

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.

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.