Family and Caregiver Schizophrenia Discussion Forum

Feeling stuck in limbo

My wife had a psychotic break about five years ago, after many years of milder delusional thinking and anxiety. We lived with her psychosis for two years before I was able to have her hospitalized. She did respond to medication, however, she has no insight, and her family and I have not been convinced her to stick with a treatment program. She has now been off her meds for about a year, and isn’t regularly seeing a doctor.
In some ways, my wife’s current symptoms are mild. She takes care of herself, goes shopping, goes for walks, cooks dinner for the family. She hears voices and has conversations with them, but keeps that to herself and won’t discuss with me. She does not interact much with me or our teenage daughter; she mostly does her own thing. So her positive symptoms are not very intrusive, but she isn’t an engaged member of the family. In the past she has been more emotionally volatile and has at times treated me rather badly, but that has subsided for whatever reason. If I do try to bring up her symptoms or medication, that does bring on an emotional response, but I’ve been avoiding that recently.
I feel a bit like I’m just treading water waiting for the next crisis, without knowing if that will be next week or next year. I don’t think I’m doing my wife any favors by letting her be like this, though she seems fine with it. I don’t think she can hear how this has hurt her relationship with her daughter. I worry most about our daughter, who has essentially lost her mother, though she is still here with us. She has asked me about getting a divorce, which is a sad thing to hear from your child. I still care about my wife and want to do what is best for her though after so many years of a dysfunctional relationship it is hard for me to say what that means any more.
I’ve tried to use the LEAP approach, not very effectively. Earlier in my wife’s disease, she would talk about it with me, but that would quickly turn to wanting me to act on her delusions (i.e. discuss with the FBI, move to another state or country, etc), and when I tried to delay, she decided that my listening was not in good faith, she would not accept “agreeing to disagree”. After her hospitalization, she became much more guarded and has not wanted me to participate in her care.
My wife’s family is mostly overseas, and despite living in the U.S. for 25 years, I think she has had a difficult time adapting. This is likely linked with her mental health issues, though cause and effect is not clear. Frankly I think her quality of life could be better if we separated and she lived near her family. That feels like abandoning my responsibility to care for her; but given that I’m not effectively helping her, it also feels unfair to have her stay here in her current condition. A third option could be to move our whole family, but that would be very hard on our daughter and on me.
So where do I go from here? I’m taking a NAMI “family to family” course but much of it so far has been well travelled ground. I’ve talked with a psychiatrist and that was useful early in my wife’s disease but more recently he has not been particularly helpful for addressing my wife’s resistance to treatment. I also don’t know how to balance my wife’s needs with our daughter’s. In some ways a crisis would be easier for me because it would be more clear what I need to do.

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I’m so sorry for your pain. It sounds like the current state although calm has significant limitations. I agree your daughter has lost her mom and u a wife. Perhaps family therapy for u too will help you deal with your wife’s mental health.

I feel you so much here. Your wife’s illness has hollowed out all of your lives. I agree that you would be better off at least having some separation, and perhaps your wife’s family can find better treatment for her (more holistic) overseas. Is her family open to her coming back for an extended visit? Do they know her issues? It’s hard with the pandemic, but perhaps scheduling a trip to her family is a good idea, and then to work with them to figure out a solution that gives you and your daughter some breathing room? I think your daughter has to come first here. If your wife was healthy, she would agree. Maybe a good mind experiment is to go through what a divorce would look like? Where would you go? Where would your wife go? And then do that, but without the actual divorce paperwork so you can still have rights if her situation gets worth and she needs interventions. It can always be temporary? But if your daughter is suffering, her mental health is also at risk, and yours. You sound like you know what you are doing. I have similar sense of limbo sometimes, as I feel responsible for my loved one, but I don’t live with him or share children. Love does not mean sacrificing your life for your wife’s, and certainly not your daughter’s. You are family and you will be there for her, but building in physical space and joy and time away from your wife’s illness is a healthy thing to do for your daughter, if you have the option and her birth family will step up. Sadly, so many won’t.

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As a mother, I would want my husband to do everything in his power to protect my children, even if it’s from me. Your wife does not have any insight into her illness, and until she does, the situation won’t improve, and you and your daughter will suffer. I think you need to protect your daughter. If she’s talking about divorce then she must be in a lot of pain.

My wife’s family has been very supportive. Several times over the past couple years, they’ve been able to convince her to resume taking her medication, when I’d failed. They’ve also expressed concern about our daughter and indicated they would support me however I decide to proceed. As you can imagine, the pandemic complicates things, but my wife has spent almost five months out of the past year back with her family – she was there for most of December and January. Those trips have been a welcome respite for me and our daughter. She has seen a psychiatrist there – they prescribed her current medication. During her latest trip, she was hospitalized for two weeks as a result of not complying with a travel quarantine, and I’d hoped that would shake things up, but she didn’t continue with medication after her discharge. So I am not sure that she would receive better care there – I think the most clear benefit would be more social support from friends and family.
I worry that she won’t be willing to separate if it comes from me. Ironically, she has brought it up herself – last year she told me that “we are separated”, though she has mainly used that to argue that she does not need to respect boundaries and is free to do as she pleases. During one of her family visits, I’d told her she should stay unless/until she is willing to accept treatment but she didn’t accept that and I didn’t have any leverage to enforce it.

I’d be curious about why your daughter brought up divorce. Is she afraid that you’ll leave both of them? Or is she finding the current situation unbearable? Does she feel guilty about wanting to leave her mother? Or is she feeling obligated to care for her?

Is your daughter in therapy? The support could be very helpful.

My daughter brought up divorce as in, had I considered it as a way that we could get out of this intractable situation that isn’t working for any of us. She is empathetic about my wife’s illness, however, I think she is becoming less patient with our lack of progress. She has been in therapy but recently stopped because it hadn’t seemed productive. Her therapist felt that she was not ready to talk about her feelings about her mother and we should pause until that changes.

I really feel for you both. I hope you find some clarity.

It’s a shame the hospital didn’t recommend the once a month injections.

@tuttle I’m so sorry for what your family is going through. My mother-in-law was in a similar situation. Years of schizophrenia and she was on APs for those years. She was not responding to the meds. She never fit in here and was always talking about leaving the country. But she was not allowed to leave because her husband thought it was his duty to take care of her and sadly she passed away due to the horrendous side effects of the meds.
There’s another instance where a woman moved back to her country and recovered enough to return and their lives were reasonably normal. The interaction with her family and friends in a familiar setting changed the course of the disease. So what I’m saying is it might be worth a try without going through a divorce process. Miracles do happen!

Sounds like a very similar situation to me - my wife was diagnosed with sz almost 20 years ago, no insight whatsoever - refuses to believe she has a mental illness, I’ve been living with the consequences since then, as has our (almost) 18yr old son.

She has had all the treatments, been hospitalised more times than I can remember, has had some very bad and worrying times, and some better times. Even the delusions are similar (police/army are out to get her, we need to move to another town/city/country), and she doesn’t engage with us at all most of the time, we rarely do anything together. Her day consists of getting up, smoking a lot, drinking vast amounts of tea/coffee throughout the day, more smoking, then going to bed early. No desire to do anything.
My only advice is just be as good a parent to your daughter as you can be, make her life as normal and stable as you can. The saddest thing my son said to me a while ago is that, “he doesn’t have a mother” - she’s just never been there for him, but of course she think she has!

Good luck with whatever you decide to do, but as someone else has mentioned, this illness destroys the lives of everyone it comes into contact with.

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It sounds as if your wife has emotionally checked out of the relationship but still finds comfort and safety in being with you. She is preoccupied by the internal voices and visions. It’s certainly distressing for your daughter to have her mother present physically, but not accessible in other ways. Heartbreaking. Your wife still does the cooking, so she is contributing and in a limited way caring for you both. Does she have any hobbies that you can connect with her on? Perhaps once most of us are vaccinated and life returns more to normal in terms of congregating freely and not having travel restrictions, you could have a discussion with her about the possibility of her moving into a group home? It sounds like having some roommates would be a good situation, hopefully a home within driving distance to you. However, building up some trust and rapport ahead of time would be helpful. It sounds as if she is happy to visit her family overseas, but not interested in moving there permanently. The situation is very sad but it sounds like you’ve done everything you can and it is really out of anyone’s hands. My mother also does not have any insight into her illness, and in 2020 decided she did not want to have anything more to do with her best friend of almost 50 years. She’d had a vision, and refuses to discuss it with anyone. The friend is a lovely woman in her 80’s and is understandably very hurt. My mother agrees that her friend did nothing, but she is adamant that she doesn’t have to continue the friendship if she doesn’t want to, and is very dismissive of the hurt feelings. I explained to the friend that my mother isn’t in her right mind so to speak, but it still stings. It does not stop my mother reminiscing about old times and she speaks of her former friend and events from the past very fondly, but otherwise it is a closed chapter for her. Best wishes to you and your family. At least here you can vent and people are in a better position to understand what you are going through.

Sorry for your pain. We have, to some extent lost our loved ones. Your wife sounds like she is doing fairly well for someone with schizophrenia. It is about acceptance and understanding, at least for me. I no longer expect my daughter to have a functional live like she used to have. She, like your wife, keeps the voices to herself, and mainly stays in her room. I accept this is her today. I am grateful she is not violent, nor does she have angry outbursts like before. She stays here, and before would wonder quite a lot. I accept her with the illness and limitations, and she accepts herself.

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I’m so very sorry. My husband and I would’ve separated but have stayed married to care for our adult son. Our son went almost 10 years and lived happily with jobs until he became psychotic again, after seeing a friend die. He wasn’t taking his meds, had a job, and living on his own. He’s now with us and it has been 9 miserable months of medication juggling to help him as he’s very depressed. My husband and I take turns traveling and doing our own thing while living together in order to survive. Getting away gives an escape of happiness. We are sacrificing for our son but it isn’t fun. I hope you find some happiness, whatever you decide. It stinks.

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