Family and Caregiver Schizophrenia Discussion Forum

How many people here are dealing with a spouse?

SOmeone posted yesterday that they also were the spouse of someone with schizophrenia and thought there was a minimum amount becuz it’s usually diagnosed young and they usually don’t marry. I agree, but am in need of some commiseration. Everything I read about support, education, and just plain fellowship is mostly parents, siblings, and friends. I’m sure there’s a few couples in the mix somewhere but I have yet to find any.

Any of you out there? Can u wave ur hand wildly if you’re out there, just to let me know I’m not along? I feel so alone, as everything I read or research is about parent-child or sibling relationship. I have yet to find any about caring for ur spouse. As I said, the person who replied to me the other day was most likely correct in saying that becuz mental illness is usually diagnosed so early in life, most never marry, therefore spouses are never in the mix. I’m reading Dr Amadors book on getting help for your loved one who doesn’'t think he’s sick - and not once in the 1/3 of the book I’ve read so far does it even mention the spousal relationship.

I believe we ARE different. We’ve lost our best friend, the loves of our lives, the person with whom we’ve made future plans with and dreamed with. The one we shared our lives, families, homes, finances,hearts with. We had plans to grow old. We may now have no one to talk to about this. I know for me I’ve fought this for the last 2 yrs, to not see what was right in my face becuz I couldn’t face losing the life I had. Yes, I see whats becoming of him, of us. I see him getting worse and worry if tonite is the nite that his voices will tell him to do something he cant take back, just becuz I worry about changing our lives or hope that if I give it “just one more week to see if that’ll help bring him back”.

NONE of my family or friends know about this. Well, my aunt knows he’s having some problems with mental illness and needs prayer - no specifics. The only ones that know is my stepson and daughter in law. I talk to my DIL daily aboout it but I know she’s sick of hearing about it. We moved from SO Ca to Wa after my elderly FIL died last year and we sold the house. We decided we didn’t want to buy a house in Ca and moved to Wa to spend more time with son and 2 grandsons. We’ve been living in sons driveway in our RV waiting for house to sell (which it did in Oct). Husbands been staying busy with work (he works full time in Seattle) which makes his symptoms lesson by about 80% but when he’s off more than a couple days, he gets worse. He’s had the last 10 days off. He’s been progressively getting worse the ast 6 days. My stepson doesn’t believe that theres a problem. He thinks his dad can control it. He hasn’t seen it in all its glory. Husband acts a little “weird” in front of son but not out of control. But then, son doesn’t believe in mental illness, doctors, vaccinations, etc. His 5 yr old (which I believe has ADHD) is acting totally normal when he kicks and hits my dog, punches a random kid on the park slide, throws other kids toys in the girls bathroom toilet at school. has his kindergarten teacher call home 6x in first 5 weeks of school, prompting 2 meetings in 1st 6 weeks. Totally normal for a 5 yr old boy. Ok. I guess it’s totally normal for someone to pace for hours cuz if you stand still, “they” will make u go blind. Or not turn on ur computer (and it’s funny cuz my husband prides himself on his computers, which he builds himself and puts much love and effort into the “perfect” model) for 3 days cuz if he does, not only will “they” steal all of our money, but “they” then know where to find us and they will find us an possibly kill us. Totally normal

ANyway, can I see the spouses out there? Holler and maybe we can fellowship a little. Talk about what sets us apart from the rest of the family members. I in no way am saying we have it more difficult or better than anyone else - I’m just saying that our relationship is unique and I believe we should have a a section dedicated to the problems that lie with a marriage relationship.

Marci

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Yup. Me, too. Found it quite frustrating. I’ve known one of my sisters had schizophrenia for years and for me, anyway, I am finding that it’s much harder when it’s a spouse. For me, no comparison in terms of the stress and impact.

In contrast, for my parents, I think my sister’s illness has been the tragedy of their lives - way worse for my dad than growing up with a schizophrenic father.

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Marfar77, I have a son with schizoaffective disorder but I also had a husband with bipolar. He was initially diagnosed with ADHD by 2 psychologists and after our divorce was diagnosed with both bipolar and ADD. It was a very long journey of disability for him.

Here is a link to a handbook by the Schizophrenia Society of BC (Canada) specifically for spouses. As a spouse you do have specific needs.

Guide for Spouses

From the intro: “With the onset of mental illness, family members experience a number of emotions and strains. Parents step in to do as much as they can to protect their child, siblings wonder if they too will develop the mental illness and countless other feelings, from betrayal to worry, run through the minds of spouses and partners.

When it is a spouse, it can place undue strain on a couple’s relationship and create different challenges specific to them and their entire family. This guide was developed for family members who have a spouse living with schizophrenia to share information specific to their needs.

The goal of this guide is to acknowledge the impacts of mental illness and help spouses and partners build coping skills for daily living.”

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Spouse here. Well, ex spouse. I was married to the “love of my life” for 15 years.He had paranoid sz. We went through many years of ups and down. Sometimes he was medicated; sometimes, not.

I finally left after he became violent w me. Long story short, we’ve been divorced 3 years, but are close friends. He is doing well on his own, as am I. I help him out when I can.

There are a few spouses dealing w sz partners on this board. I’ve found them in a number of threads.

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Not a spouse but a gf/ baby mother ! I’ve tried and tried and nothing works . I would get left every other week for something simple . One day I was moody just gotten off work and didn’t feel like talking so he up packed his bags and left me here with his newborn baby . His check is in his moms name and she stole his money , but in his mind he thinks I’m out to get him and his mom is not. It was just a battle I couldn’t fight anymore . and I hate to say I gave up on anything but this disease just was too much for me and my newborn

My fiance has had schizophrenia since I met him 40 plus years ago Back then he was on meds, working etc. I thought we were doing good. Over the last 10 years things have gone from to bad to very bad. I worry about him but at the same time it is affecting my health. I am a nervous wreck and now I’m having tremors. I feel stuck. I spent most of my life taking care of him and others and I was hoping for some type of stability.
He wants to save money to buy a piece of land in the middle of nowhere and come and go as he pleases. If he doesnt help me by next month we will both be out of a home. I live in my parents house which is in probate right now and I was going to try to buy out my sisters but now???Time is running out fast!!!

I feel you completely. Sometimes I wonder if I’ll ever stop grieving the loss of how things used to be and/or could have been. I used to go to NAMI in-person support groups, but everyone there was parents with ill adult children. No one seemed to be able to relate to the spouse dynamic (which, in my situation, is really parent-child anyway…but how I long to have a partner again). None of my family knows he has schizophrenia, because he tried to kill me once (and nearly succeeded - police saved me) due to paranoid delusions, and there’s no way my family would support me staying with someone who is capable of that. It’s clear to them that he’s “off” in a whole host of ways, so I’m left trying to insulate them from the truth. It’s hard as a spouse, with a unique set of challenges. I feel so alone and unsupported. I have my own chronic illnesses and no one to care for me when I’m struggling, as I’m his 24/7 caregiver. Even vacations aren’t really vacations, because I’m perpetually on duty. There are no breaks. In short, I’m with you and sorry you’re facing these challenges too. Please reach out anytime. We’re not alone.

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Maybe we can share hardships and commiserate a little? If u need to talk, just holler! Not sure how I leave my email address here for u but I’m willing to if u tell me how? I’m pretty new to this (both to this website and also to mental illness) so I’ve got a whole load of ?'s But I can be supportive. Just let me know!

Marci

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Am glad I came across this as I was also looking for a support group for spouses and not finding one. After reading your post and all of the replies, I feel like maybe it’s a little early for me to be feeling this way as it’s only been just over a month. My wife has yet to be diagnosed, but I am fairly certain she has schizophrenia to some degree. Her mother has it, and it runs strongly in her family. I have a psychiatrist appointment for her next week so will find out. But I am having trouble in the meantime dealing with her. It all started when her grandfather, who raised her, had a nasty fall down some stairs and ended up in a coma. I flew my wife, who has only suffered with anxiety disorder, and my 3 year old daughter half a country away so she could be with him. He passed a few days later, and that is when she stopped answering my calls. Still, I figured it was just the grieving process and tried not to make a big deal of it. A few days after he passed, I get a call from her father saying she had been placed in a mental institution, and that he had my 3 year old girl. I was terrified for my daughter and flew down the next day. Thankfully, my daughter was fine, just scared as she didn’t know any of that family. I found out then that my wife had called the police and told them that everyone was trying to kill her and that her grandmothers house was covered in blood. I didn’t want to believe it, but seen where she had barricaded herself into the room she was at and had thrown all her medication out the second story window. When I went to see her in the hospital, I knew it wasn’t a joke. She really believed that everyone was trying to kill her and told me the people in her grandmothers attic was pumping gas into the room…I managed to get her out, but it was an interesting trip home. I thought being home would help her, but she thinks that all the food is spicy and has thrown it out(even the water). She still thinks people are trying to kill her, and that people are in the attic. She also has her moments when she doesn’t trust me. And a few times thought I was a doppleganger( she wanted to look at my teeth). She has been telling the kids all kinds of stuff about me, telling them not to trust me, my 9 and 3 year old. I look at them and am so scared for them. I wouldn’t be able to go to work if my 19 year old son wasn’t home still. And I have never seen someone convert so hardcore to religion before, its scary. I don’t mind my kids learning about the lord, but some of what she says I know is wrong. I can’t see how some of you have held on so long if this is what it’s like. I hope so much that the psychiatrist gives her something to help. As she is I don’t recognize her most of the time. Just a few moments here and there that don’t last very long. I want to get help for her and know it seems awful, but feel I cannot stay in this situation with my kids long-term. It’s not fair. This is my second marriage, and everything was going great. I love her so much it hurts to think it could end this way.

Hi Mechanic,
I would definitely try to get her back in a hospital. Talk to the psychiatrist about it, even before the appointment if you can. She needs to be medicated under supervision.

It’s scary that it came on so suddenly. The death of her grandfather was a likely trigger. Hopefully, it can be brought under control quickly, too.

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It is scary how quick this happened. She turned 31 last year and things were normal. I wonder if the psychiatrist can even talk to me about her without her permission. I think after talking to her that may be their recommendations as well.

Get her to sign a HIPPA-release form at the doctor’s office. That way he can talk to you about her meds and care recommendations.

The doctor may not recommend hospitalzation. Instead, the doctor will likely send her home with you—unless she agrees to go willingly. Otherwise the doc will say to bring her to the ER if she poses “ a threat to herself or others.”

This has been my experiences dealing w a Sz husband.

Hi @Marfar77
I am waving wildly at you!
My husband has SZA. His mental illness manifested when he was young, but he was misdiagnosed with bipolar type 2. He was over-medicated on the wrong medications, hospitalized, and thoroughly sick of being sick.
We were friends for 9 years before we got married. We went to college together, and he was always an odd bird, but so was I. I knew he had mental health issues before we got married, but it didn’t seem unmanageable-- he had not been hospitalized in years, and even seemed to be doing ok without medication (keyword: SEEMED)
A few months into our first year of marriage, he had a severe episode that resulted in him getting kicked out of grad school and us losing our housing, but the silver lining was he finally got a correct diagnosis. I got him to a doctor who took one session to figure out that he had schizophrenia. He was put on Latuda, (among other things) which seemed borderline magical because it didn’t make him sick. Because of this, he is medcompliant, which is a huge hurdle for many. Things were improving for a bit, as we got out of an unstable living situation. I can provide for us, I am working on taking care of him, making sure he has safety nets and can live a near-normal life.
But things aren’t great. He’s miserable and manic right now. He tells me that I keep him “like a pet” and I don’t know what to do. I feel like he hates me. I feel like I’ve tried my best to love him – I do love him, I want to be married, I want us to have a life together-- but it’s harder and harder to talk about the future with him. He seems completely, wretchedly unhappy, and nothing I do seems to matter.
I feel like I lost my husband before we even had a chance to be married. I know everyone talks about the “honeymoon” period, but I honestly, the first month after we were married was maybe the only happy time we had together, before his illness set in. Ever since then, I’ve been in survival mode. It completely affects how we talk, and Im not sure he notices how much everything I do is about him. It kills me, but I also know that he isn’t able to be 100% for me, and I can’t expect him to.

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I hear you. I know from your other post that things have continued to be very hard.

My husband has been symptomatic twice now over the course of seven years - nothing near your wife in terms of intensity of symptoms and there are no children involved and I am still exhausted.

I think it’s hard to say at this point what the future will hold for you and your family. If she responds well to medications and has sufficient insight once she recovers to continue taking them, then life could be good again.

I am so very sorry for what you are going through. It is a devastating disease with a lot of collateral damage in terms of family/friends.

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mine was a smart, damn good looking woman, perfectly normal, lived together a year, married (she was 28), 1.5 years later had our daughter, about a year later in less than one month gone violent SZ at 5’10" 140lb dangerous fuck, passed the shit to our daughter, we celebrated our 29th year of marriage this past december… I sleep in a fortified bedroom and a 357 on my night stand…

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Laughingsteps, your experience sounds nearly identical to mine, in every single way. It was almost like reading our own story. Our “honeymoon” phase was so short-lived, and it feels like it’s been years of perpetual struggle since. Sometimes I wonder if I’ll ever stop grieving the loss of what was, what could have been, and honestly - what could be (if I left and chose a different partner). There isn’t a single moment of normalcy. Even at his highest functioning he’s not really present and able to step up and contribute in the way I need him to. 95+% of life’s responsibilities are on my shoulders. I’m exhausted and overwhelmed, and feel unsure how to get out of the cycle of constantly burning out, other than to leave him. But I’m grateful we have a place to chat and connect. Thank you for sharing.

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I’m wondering if there’s a place where we can chat regularly, without clogging up this forum. If anyone has ideas, I’m open. Things aren’t well here…he’s much more symptomatic the last few days, and I feel isolated, alone, and maxed out. I wish we were all closer location-wise and could get together regularly. :slightly_smiling_face:

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Hi @floweroflife . I read this thread as I am married to an alcoholic who has his own type of delusions (nothing compared to sz), and a mother of a sz 35 year old woman. I basically support both, I understand that spousal mental illness is a hard reality to live with and is definitely different than caring for a child.

I just wanted to say that chatting on this forum is definitely not “clogging up the forum”. It is great, in my opinion that @Marfar77 started this thread, as it probably is a long overdue thread.

I, myself, found this forum because a long thread about unmedicated sz started by @hope showed up on a google search, so this thread about spouses may well be found by other spouses not even on this forum, and your group will grow.

You can also message others directly on this site, if you want more private conversations.

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While I’m glad that I see that I’m not alone, I’m sorry to see that so many of us r dealing with a spouse with SZ. My husband had a bad month last month, so bad that I had thought about possibly hospitalization (he wouldn’t have gone willingly tho and he’s not a threat to others or himself at the time) so that wouldn’t have worked. His psych upped his Depakote and he’s doing somewhat better. He still hears voices, is stil paranoid that the bank is stealing out money, and has recently become such a miser with our money. And I mean a total cheapskate. We have enuf money to do stuff, buy stuff, and have fun. But now I’m not “allowed” to even go grocery shopping without him becuz I might spend too much. I asked him last nite if I could buy something for $16 on Ebay (I’ve never asked to spend money before, it’s also MY money and I’ve just bought it, but I thought I’d give him respect and ask so he didn’t freak out) and he now doesn’t trust Paypal. Thinks they’re tracking our bank acct and will steal our acct number and wants me to close my paypal. Nope. Not gunna do it. He’s already done it. So now I can’t even buy something on Ebay? Last week he started yelling that the bank stole his pay (he gets paid per job so it’s little by little all month long and it was about $200), becuz he couldn’t see it in the balance. I added it with my calculator and it was correct. Then he got mad at me for doing the math. He thinks the bank steals from us everyday. So I tell him to go to the bank and confront them but he says he cant prove it so he wont. If it were me, I would switch banks. But he thinks the same thing will happen no matter what bank it is. SO we live with the fact that the bank steals our money everyday. Oh well.

And all of a sudden last nite he told me I was a robot. Great. I asked him about that and he said “when ur able to understand, u will”. Most of the time I don’t even want to ask what he’s talking about. I just want him to keep his bizarre thoughts to himself and not even talk about them. Sometimes he’s open about them and sometimes he’s not. Then we argue and I beg him not to talk to me about it and life would be grand.

Anyway, this past month he’s been doing somewhat better. He’s been working more which helps. Staying busy helps him. More than a couple days off is dangerous for him. Today is his 3rd day off and I’m scared. But hopeful that maybe this medication is helping somewhat.It IS helping his violent outbursts. Those r rare now. He only freaks out about once a week now, compared to everyday. SO thats a plus. Like I said, the voices are still there, the paranoia is still there, and this new cheapskate thing has been added. And I mean a total cheapskate. He’s super proud that h’s increased our savings as much as he has, and while I’m happy about that, I’d like to buy a pair of shoes occasionally!

Anyway, it’s nice to know there’s others in the same situtation as me. Let’s keep up with one another and support each other. I have an appt this afternoon but I will reply to everyone personally tonite. Blessings to all of u!

Marci

Not a spouse but my son was diagnosed at age 53. I knew for a long time something was wrong but he kept his job for over 10 years, until he got worse and couldn’t handle it. He never got married though, so I guess that reinforces your point.