Family and Caregiver Schizophrenia Discussion Forum

How to sustainably live with a loved one who has severe mental illness

My fiancé and I have been together for 5 years. He has schizoaffective disorder and his level of functioning has declined quite a bit in that time period. His cognitive issues are moderate to severe, depending on the day, and his ability to communicate is poor. He needs some level of support with all but the most straightforward daily tasks. If he is asked to contribute beyond that, he gets overwhelmed, anxious, and his level of functioning declines even further. I’m left taking care of the overwhelming majority of life - his, mine, our household’s. I also have a 17 year old son from a previous relationship who lives with us part time, I run a business, and I have chronic health issues that leave me in need of extra support myself - support I’m not receiving. During his last psychotic episode, he tried to kill me with knives. He has thankfully been properly medicated and fairly stable since, but the related cognitive issues have such a huge impact on his ability to function that I’m left being a parent instead of a woman with a co-equal partnership. I’m beyond overwhelmed, feel completely alone, and don’t know how to make this relationship work. Even on “vacations” I’m still a 24/7 caregiver. As cruel as I feel saying this, I don’t get any time away from the dysfunction. How do those of you who have loved ones with severe mental illness living with you make it work? As much as I want it to, I’m not seeing a way to make this sustainable long term. My fiancé is an incredibly kind-hearted man with many wonderful qualities. I know he’s struggling, and it’s not his fault whatsoever. I have absolute empathy for what he’s going through with this disorder. At the same time, it’s not possible for me to keep this up indefinitely. I’m at my breaking point. Is there a way through this, when your partner doesn’t have the level of functioning that is typically needed in order to sustain a long-term intimate relationship? I’d so appreciate any wisdom you’d take the time to share with me. I’m pretty heartbroken at the very real possibility of having to walk away from this, and am worried about what it would mean for my fiancé’s future.

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When my husband first became symptomatic, I was very much in “I love this man and I must save him” mode.

The things I tried worked and he got better and although nothing was every quite the same and although a lot more was on me and although I was never really able to relax, I had no regrets about having married him - although I can remember thinking, OK, I got him through this once but I’m not sure I can do it again.

Fast forward several years to a relapse (nine months and counting now). I haven’t left yet, but I most definitely am thinking through what I need for the relationship to be sustainable in the long term - which if things continue as they are now, it is not.

And even if things get better, I am not sure we will make it as a couple, given that relapse is always a possibility and I can see that if I remain with him, we will never really be able to have a joint social life again.

You are not married, your fiancé is much less functional than my husband is when his symptoms are stable, your fiancé has tried to kill you while symptomatic, and you have a 17-year old son in the house at times who also would be at risk in these circumstances.

Only you can decide what is best for you and your son but I certainly would not blame you if you decided to end the relationship.

I really appreciate you sharing your experience. I’m sorry you’re in a space of challenges and uncertainty too. When your husband isn’t symptomatic, is he able to function well? My fiance’s cognitive issues seem present no matter his state, which I’ve learned can be a common part of schizophrenia and schizoaffective disorder. He’s no threat of being a harm currently, and we’re very aware of warning signs and have an emergency plan if we see them. I feel fairly confident in our ability to address it safely moving forward. I didn’t understand what was going on this past episode when he got violent. His family was in denial about his illness and, as such, I hadn’t been informed of it. I didn’t know what was happening with him. After the assault, I made it a condition of continuing on in relationship that I be involved with his care and have access to communicate with his care team. It was then that I was informed of his diagnosis and was able to advocate to finally get him treatment. He’s been on a proper medication regimen since, and is finally stabilized. But the years of going untreated seemed to have caused damage to his brain. We have brain scans over time that correlate with this. I’d love to learn if there are ways to help him recover some functioning. His limited functioning is tough. I miss my partner. Even when we do go out to dinner or an event, I look around at other couples and grieve as we sit in silence. I long to be able to have conversations with my partner like they do, to be light-hearted and to be able to connect with each other on a deeper level. He’s so perpetually caught up in his head and his own anxieties that he’s not able to be present with me, and it leaves me feeling quite alone. I feel selfish for saying that, but it’s taken me a lot of work to get to the point in life that I can admit that I have needs too, and that they’re valid.
Thank you for communicating with me. I haven’t been a part of this online group, nor do I have support or understanding where I live, and I can’t do it alone anymore. You’ve given me some strength and I’m grateful. I hope your weekend is a gentle and supportive one.

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Hi floweroflife,
I sympathise, I really do. My sister came at me once with a knife. I have to look after her because she’s my sister…well, not that I have to…the blood bond is harder to break than a water one if you know what I mean.
It sounds like you’re really struggling. Why are you still with him? As harsh as this sounds, if he weren’t related to me by blood, I’d let him go and let the state look after him. Sorry if this sounds harsh but it’s what I’m feeling from your post.
Sometimes they play on their illness and know exactly what they’re doing. It sounds as if you’re afraid he’ll leave you and that’s why you do everything for him.
You need to look after yourself. Stop doing the little things for him. Are you scared that if you stop doing the little things that he’ll become violent again? I feel like that with my sister. It’s incredibly diffiuclt to stand up to her. I’ve had depression for years but it’s become worse now. She refused to take medication during the day and she’s getting worse. I’ve become ill now and have to see mental health services myself. SHe’s slowly but surely ruining my life and i’m letting her. I’ve had to stop work and go on universal credit. PErhaps i’m ill too. i dont know. Sometimes i think she’s posessed by a demon who is trying to destroy me.
I feel very scared of her. I’m to see professionals after christmas and hopefully they’ll be able to help me. They’re failing her. I think they’ve even given up on her. SHe’s so manipulative and able to make out to them taht she’s doing okay when she’s not.
You need help. GO AND GET IT. Be brave. I’ll try and be brave too. They’re scary people when they’re not taking their proper medication. Peace xx

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Yes. He has been working full time in a professional capacity and historically has been very popular with a lot of friends. And even in this state, he has the capacity to comfort me (when he is not overly focused on suspicions of my intent).

Probably because his break occurred later in life, he mostly has “positive” symptoms (i.e. delusions, auditory/visual hallucinations) and very little in the way of cognitive or negative symptoms.

He did respond well to medications before so probably has the potential to do so again, if he decides he is willing to try again. But he has never been aware that he is ill, which complicates things.

I’m wondering if the “cognitive issues” you mention are cognitive issues only or if some of what you are considering “cognitive” are negative symptoms of the disorder (which typically do not respond well to medication). For example, when you talk about wanting conversations and closeness but not being able to get it, this could be due to negative symptoms (which historically have not responded well to antipsychotic medication).

Apparently there is a new medication in the pipeline that does help with negative symptoms. Looks like I deleted the link and I only skimmed the article as it didn’t seem very helpful for my particular situation, but it might be worth talking to his care team about this.

Hi there. I apologize for the delay in responding. My notifications didn’t seem to be working. I’m glad your husband responds well to medication, but I imagine it does complicate things if he’s not aware that he needs it. I hope things have improved for you both.

Your sharing about cognitive issues vs. negative symptoms was a huge help for us. I hadn’t looked up negative symptoms since first learning about my partner’s diagnosis. I admit I didn’t think much about them because the positive symptoms were so overt and in our faces at the time. But now in revisiting the topic, this seems to be exactly what is going on - negative symptoms. My partner and I were both in tears to finally have some answers. We spent some time researching and looking into things that might help. He started one of them (a supplement) and there has been some slight improvement. Just knowing what’s going on helps us talk with his providers in a way that helps to educate them, and in turn, helps them to hopefully help him. Thank you again for helping us to become aware of what was going on. It’s a very important first step, and it brought my partner great relief to know it wasn’t some personal failing on his part. It’s simply a part of the disease.

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This is a very good channel if you are looking for more helpful information
Education is the key to eliminate fear in this journey
I wish you well.

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