Why does nobody help us?

Family
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Anyone that has followed my posts on here will know that, like many, I have been on a roller coaster for years with my wife, who is diagnosed with Schizoaffective Disorder. I have been reading through people’s posts again today and I just have to ask, why are we carers just completely ignored by the systems? These are rarely illnesses with a single sufferer, they are often symbiotic. You have the person who is diagnosed with the condition, and you have the person or persons who are trying to care for them who is suffering the results of the symptoms. We should be treated as sufferers of the condition, and we should be respected and taken care of appropriately.

Unlike many, I went in with my eyes open. When I first met my wife she was in an episode and I could not understand why nobody else could see it. I supported her through a great improvement in her condition, but then over about 15 months she had a long period of gradual decline, with lots of flashpoints, resulting in her eventually not being able to work, before she abandoned me and started making outrageous allegations of abuse about me. Over months and years I went from treating our relationship as relatively normal, with quite robust fair arguments and giving a much higher level of emotional support than most relationship whilst having confidence in my wife’s loyalty to me, to increasingly biting my tongue, walking on eggshells, facing irrational demands on my time, irrational blame, scapegoating and anger, even when I was practically waiting on her hand and foot. I could see things were deteriorating and I was asking for help, but nobody took it seriously.

It was not until my wife abandoned me last June, and I myself ended up in crisis care, that I realised what bad shape I was getting in to. As a very rational person that is very aware of my own mental health, I had fallen into a pattern of bruising myself in reaction to when my wife emotionally abused me. I was actually blaming myself for arguments where my wife was acting irrationally. I was thinking that my wife was the sick one and I had to sacrifice myself and accept what I could not see was abuse. At times I was blaming myself for everything. I was suffering abuse without malice, but it was still abuse, with many of the same impacts and harms.

My decline was not something that happened overnight. I had taken out a fair size insurance policy late in 2023, and although this was a responsible thing to do in general, I think it was in part me making contingencies to provide for my wife if she left me, or if my heart gave out with the stress of caring for her. When she abandoned me, and (as I suspected) utterly betrayed me, she actually cited my struggling to cope with supporting her as me abusing her. To be getting to the point where I am completely broken down and saying I can’t cope and I don’t know what is going to happen, and her recording that, and saying “look, he is threatening to kill himself” and for that to be used as evidence of me abusing, in the face of me repeatedly trying to get help to deal with the difficult aspects of her condition, it is just disgraceful.

My friends were trying to tell me I was being abused by my wife, but I thought if I accepted that I would be a fraud. It got to the point where one of my old friends who works in mental health said “If you do not understand what is happening to you, you need someone to make you understand what is happening to you” and I did take that on board. Eventually the crisis team strongly suggested I accepted a referral to a local men’s domestic abuse service, and even though I declined it, they called me and convinced me to take their help. I am coming out of that service tomorrow, and although I kept telling them I felt like a fraud, and there are much worse off people like me, I have come to see that I have suffering what I keep calling “abuse without malice” from my wife. I think a lot of what she did out of distress and desperation, and at times when her empathy was impaired.

It is pretty hard when you have been working all day, you have been up late night after night trying to give them emotional support, you have been trying to keep them fed and on a routine etc. and you are completely exhausted, and then just when you think you are finally going to get to sleep (you’ve already given up hope of seeing some care and affection from your partner at this time) and then they throw you another soul crushing curveball. You inevitably and understandably eventually break down in tears and then you are facing “you are just crying to manipulate me.” The times you lose your temper and bite back you are never allowed to forget it, in spite of the outbursts and frankly unnecessary stress they heaped on you for hours, days, weeks and months…

And why do we put up with it? Because we love them. We love them so much that we want to share the illness. We love them so much we want to steer them from harm and we do not want them to come to harm without our efforts and interventions. We see it as our illness too. We feel sorry for them, and we feel like they are the one suffering, even when we are on the end of their difficult behaviour. We have to listen to things and deal with actions that so many people in their lives will not put up with and will just shut them out. We try and take it all on the chin, and we might do it knowing there is no hope for an improvement. We are not doing it for a gain. We do it knowing our lives might never be “normal” and that they will likely never get better. We do it because we want to care for them and to protect them. We do it out of devotion. We try to fit it into our lives and so often we do it whilst gaining the resentment, the anger and terrible accusations of the person we are trying to help.

I mentioned on another thread that just before my wife flipped on me again just before Christmas, she had sent me a card that showed she could appreciate everything I had done for her. Her words are unmistakable, she could understand, she knew, she wasn’t angry with me, and she knew that in spite of all her protests, I had stuck it out in the face of terrible resistance from her. And even though she had turned on me again just a few days later, I thought to myself “I am so lucky I got that. So many people have not got that. I am a really lucky person.” The window was open for 4 weeks before she lost that clarity and the resentment and paranoia and anger crept in.

I am increasingly thinking that part of the problem is the medication. One thing that being off of medication tends to do is make the symptoms more prominent and easier to get help with. I think my wife’s prodromal phase has changed from being between a week to a day long before psychosis overtakes her, to about 6 weeks to 2 months. That is a long time to be coping with a lot of more subtle and nuanced symptoms that have potential to be even more destructive than being completely out of control and a clear need for hospitalization. I also suspect it means there is a lot of misdiagnosed remission, where the person is going in and out of the prodromal phase, but never quite getting into psychosis, so flying under radar. I feel like with my wife, once she removed me for her life, was eventually progressing into the psychosis because I was not there to try and managed the illness.

So why is it that the diagnosed person is the person that gets all of the attention? Why do we not look at the whole picture and immediately give the carer or partner and whoever needs it the help and support they need? What person that is dealing with these things in not carrying a huge amount, and who is not suffering? Surely it is a given that we are going to be suffering, need to be protected? Surely we should be a priority too? Is there anywhere in the world where we get a look in? Why are we expected to just be collateral damage? We deserved to be treated correctly and get the right care and support! We should not be left to feel isolated and alone!

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Almost every word you typed resonates with that of myself with my husband :cry:

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Indeed, on this very board you can read accounts of caregivers or partners who seem to have slipped into a kind of delusion. A few of them I would even characterize as nurturing their own fixed delusions. It’s not malignant, it’s just human nature to keep doing more or less the same thing hoping that it will somehow result in a breakthrough. Isn’t that the definition of insanity? And yet, some of us do “succeed” in at least stabilizing our “insane” loved one, so I’d argue it is not.

It reminds me of the sane/healthy person writing an Advanced Directive and telling loved ones: “If I ever get to […] point, call the doc/give me the pills/pull the plug.” In the case of your wife, her condition doesn’t permit her to remember or trust that insightful moment. But you still can.

It’s “contagious” in that sense. But in a system that is in denial about how SMI destroys lives and livelihoods, and still heavily stigmatizes it, we’re lucky to get even a modicum of care for the afflicted. Care for ourselves? Readily available if you can afford it, spotty or non-existent if not.

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It is truly a horrible situation, I think the heavy stigma about violence and the difficulty of the afflicted person to seek help or even take the help that you present to them makes it impossible in some cases. I would always tell my son about peer support groups he could join and trying a new doctor or med or even eating healthier and how important it was to stay on his meds, but he would have non of it, and he just kept deteriorating in his own SZ world, so sad.

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That’s the story of my life in a nutshell.

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The question “Why does nobody help us?” is a good question. I have complained in this forum about the lack of help and guidance afforded caregivers.

Helping the caregivers helps the patients. I was basically left dealing with stuff I didn’t understand and had no idea how to address. All I ever received was criticism and ostracism from my uncles, doctors and social workers, police, etc. NEVER a shred of advice, assistance, not even sympathy. Even when I told my mother that I was choking on all the stuff with Billy and it was affecting my studies, all she could say was “I know you’ll always know how to do the right thing Eddie, and I’m counting on you.” That was the most helpful thing said to me in how many decades of dealing with disaster?

If we had been able to get a little insight, a little advice, a little idea of what we were facing (Billy was like a raging wild animal a lot of the time), everybody’s outcome would have been better. My parent’s hearts were broken because they hoped in vain for a “cure” to get their son Billy back. They had false hope and nobody told them otherwise. Instead, they talked them into mortgaging their house TWICE in order to pay for some quacks to “treat” Billy, who was magically “cured” after my parents blew through about $120,000 in 1985 dollars. And I swear to this day that he came out worse, or continued to deteriorate, throughout the whole debacle.

Once I saw some of Billy’s stunts, and especially after watching my parents become destitute for nothing, I realized that Billy wasn’t going to get better. If we’d known better, my parents could have been spared a lot of grief, I could have been spared a lifetime of agony, and Billy could have been cared for a whole lot better.

But nobody ever told us anything useful.

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Also remember that many of the homeless people on the street are schizophrenics whose families have abandoned them. People can’t cope with them and there’s no help for the families to help their loved ones. The people you talk to here have sacrificed their lives for their loved ones. Not everybody can do that. And if you have kids, do you really want to expose them to their raving maniac uncle? Do you want to damage your children? Do you want to sacrifice your home life?

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I see someone experiencing psychosis on a regular basis in my city. Sometimes they scream and act like they might become violent, but mostly they talk and rave to themselves. People just ignore them and walk by. Unless they commit a crime, our system is powerless to do anything. It stinks.

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Irene, how are you and your son doing? My son still in jail - for a year- de compensating- in isolation - he’s aggressive - they can’t have him out with others- they don’t give me details- I don’t need to know- they are trying to figure out what to do with him- still not taking his meds- my heart breaks- I try to let it go but …it’s hard to think of your love one with schizophrenia isolated and alone- I’m sure he doesn’t know where he is or what’s going on- praying they find a safe place for him-he’s a hard placement because he won’t take his meds and he’s aggressive-non cooperative- hope you are well - thanks for being here- so grateful for everyone here- sharing your experiences-

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I hear your pain and anguish. Not an easy position to care for a loved one with a mental disability. For myself (but not in as difficult situation as you are) I have had two NAMI resource persons to help guide me each time. I talked to friends who listened and prayed with me. I have a therapist and a coach who has helped. I have also attended the NAMI family and friends support groups and took the training to be a facilitator. The hard part for me is setting boundaries - not for my loved one but for myself. There are resources out there but it can be hard to find and know if they will be helpful. What I have been told over and over is that I need to take care of myself. The big question is: How do I care for myself and find the tools I need to do this? May you seek and find this for yourself!

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Right on the money. I’ve shed many tears and spent much time trying to understand my son’s illness and how to help him. In an understatement of epic proportions, his psychiatrist told me early on “You’re in for a rough ride.”

Over the years I’ve benefited from different sources of information and support. This has included the NAMI family to family classes, NAMI suppport groups, individual therapy in person and through video conference, county health services family support groups in person and through video conference, one-on-one meetups with people in the same situation, family support (my own family; so fortunate they are empathetic), and of course on-line forums of which I’ve found this one the most helpful.

A comprehensive list of support options early on would have been great, but instead I muddled through it, asking a lot of questions and steadily connecting the dots. No doubt I’ve missed some.

Most recently I’ve become involved in our local county government mental health services department as an interested member of the community and family member of a mental health consumer. I have visions of being the change I want to see in the world. We’ll see how it goes.

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Thats hard, my son went to jail twice when i had to call on his violent behaviour. The second time, the cops insited this is best way, and they can get Mental health court to make him go somewhere. That never happened, instead he was there 3 months and they never gave him medication. So, it was not the place to be. The only good thing, is he doesnt want to go back, so he tries to not be violent. But blames me still that he went there, and hospitals, and hates me most of the times. Occasionaly smiles, today he got excited and smiled when I asked if he wanted cheese on his turkey sandwich. That was nice, like a little sweet boy, but lately he is giving me the silent treatment. As his dad told him he needs to be a man and move out on his own. So again, it is my fault that he is not capable of that.

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I still find it hard to cope with the “I do not love you, I have never loved you” statements. We had a four week period after she was last hospitalized when she adored me, and appreciated everything I had done, and then when the switched flipped, she is just ever more firm that she has not only never loved me, but “never had feelings” for me. Why does it have to be so soul crushing? I find a bit of me believing it, but then I look at the absolute reams of evidence to the contrary, the thousands of messages, my memories, the photos. I saw an old email the other day when she had sent me a photo of me I had needed, and this is a bit sickly, but she had titled it “Hunksicle”, and I am clinging to things like that. You have to feel something to write that.

I do also think therapists can be partially to blame, because whenever she sees a therapist, she seems to get harsher on me and devalue our relationship more and actually less responsible for her own actions. I do not think there are many therapists that actually want to encourage accountability and moving towards getting better, as well as recognising the manifestations of the illness on the person. Maybe this is because if they actually improve the situation or challenge the patient, they risk losing the patient as a customer. After she had her first hospitalisation last year, her then therapist refused to speak to her. I really would like to litigate against her.

Last night, after it literally being a month ago when she put in writing how she loved me and could completely appreciate how I stood by her no matter what, she told me that standing by her no matter what was “problematic”. It is like she has to completely rewrite not only reality, but the actual feeling she has in her brain. It is not good enough just to say she doesn’t love me anymore, because the person I am, I think she still loves. In order to abandon me, I am rewritten as someone I am not, and she describes this incorrect version of me to other people, even people we both know, and they believe her and often encourage it. The only time someone really challenged her on that coincided with her delusions about me collapsing and her completely accepting that she had been a nightmare for the prior 5 months.

When she is in hospital and grieving that she has got sick again, I hate the loneliness and desperation she has. I can only phone now because she is out of the country, but to have it so when I call her and she is so happy to hear me call, and telling me that I am giving her hope when I am being her husband and trying to help pick her up, and then for a couple of months down the line to come out with that act of kindness and compassion being “problematic” like it is some kind of opportunistic power play to take advantage of her, I honestly don’t know how I can negotiate that. It is things like that which are so soul crushing. Everything I do or have done for her is now rewritten as taking advantage of her.

I think a lot of people that have episodes of psychosis have the function in their brain to decide what they believe. As in, they decide to believe something that in most people would only involve a suspension of disbelief. My wife when in psychosis often says “why am I the one that is wrong, why can’t it be the world that is wrong?” I feel like that is what is happening here. She has a problem, and rather than looking genuinely into the very deep seated issues that she needs to address, she has decided the problem is all me, and has rewritten me in her mind to fit that new paradigm. And the fact is, good partners often challenge you on things, because they should keep you true. If you have deep problems and you find you are hurting when you around your partner, that could be because your partner is trying to keep you true, and they are there to help see you through and face that pain. But everything has to be quick and getting out of that immediate distress. Some people that suffer with psychosis seem to have developed these tools to say “ok, rather than me change, because that is hopeless and I don’t know how, and i have no faith in it - everything outside of me will have to change”.

I have noticed how when I was being emotionally abused by my wife, and I sort of knew it was happening, but struggling to comprehend it, every time I tried to talk about things needing to change, any suggesting that anything needed to change, or anything about the way things were not being acceptable, she immediately took it as a personal attack and would react negatively. At first she might appear constructive, but where it was clear she was in the wrong, it would nearly always tip over into an argument that she would driving. And we are mainly talking about her acting angry with me, when I was focusing all of my attention on supporting her, and doing the bulk of the housework etc. I have really been on the end of a lot of denial and her deflected guilt over the housework. Just even mentioning it is repurposed as me somehow attacking her. I really think that is like a borderline personality disorder thing. She has had moments when she has said out loud that maybe she has that condition, but she resists any diagnosis.

Right at the end of her living with me in the UK, after this terrible 3 months of her leaving our home, getting into a terrible state and being in and out of hospital, she came back to live with me, full of hope and optimism, until three days in, where we had a minor disagreement, and she suddenly declared she was moving out again. This was a plan that did not last very long, as she soon decided to leave the country altogether. However, in the intervening period, when she was in theory wanting to be out of our relationship again, she then got very distressed about her workplace. She could not handle the day to day office nonsense, and she was coming home and trying to vent it on me. Remember, she has declared that she doesn’t want to be with me at this point… So when I said “look, this is not right, you can heap this distress on me for hour after hour, let me try and comfort you, and then eventually just say I am not taking you seriously and then start getting angry with me, I have done nothing to deserve that, I just want to ease your distress” and she looked at me like I did not care and said “you are meant to be my partner [remember, she was already telling me she wanted to leave our home], you just need to understand that when I am work I get very frustrated and when I come home I need to vent all of that frustration”. I replied to her “Ok, so is there a word for that, when someone is at work all day getting more and more frustrated, and they come home and they take it out on their partner?” When I drop these truth bombs on her, you get that moment when you can see her thinking “Oh, hang on a minute he has snookered me here” like the truth is optional or something, and I can almost see her flash through a thoughts of me abandoning her by not playing along with the delusion that I somehow personally deserve facing all of these rage. Because that it was she was doing, actually convincing herself that I was directly responsible for her anger, upset and distress. To put this in perspective, one of my colleagues would often walk past my wife when she was on her way back home from work. He told me there were days when she would see him and say “hi” when she went past. He said there were other days when she would be complete tunnel vision, looking like thunder, and he would think “oh dear, he is in for a hard evening.”

The only time I saw her take a little bit of accountability for her behaviour in this period was when she not only vented about work, but suddenly starting screaming like she was being murdered. I tried to calm her down, but the earliest opportunity I got, I just slipped out of our home. She hated that, but I was not faced with open hostility for it, because she wanted me back. The primary reason I left was because I did not feel safe in her presence, and I thought the neighbours might have called the police. She was then messaging me saying that she knew some of her behaviours were unacceptable and she needed to work on them, but she wanted me to come back so we could talk more. The next day she had backtracked to the point of blaming me for her behaviour.

I became more aware as my response to her anger and irrational behaviour became more subdued, and she was running out of reasons to blame me for her outbursts, that she was saying the things I was saying calmly were “pushing her” to act out in volatile ways. The fact is that she was telling people that I was abusing her, yet she never made a claim that meant anyone actually challenged me, and there was no opportunity for it to come collapsing around her ears as my very valid claims of abuse would have really carried some weight. It is really sad. I am glad she never hit me in our home. There has only ever been one violent act towards me when she was sick in hospital, but I know we come close in our home several times. I sometimes regret that I did get out on the occasions I thought she was going to attack me, as an attack would have been a clear sign of something being wrong. Instead I was treated like I was crying wolf month after month.

Yesterday it was really hard because not only was she saying she had never loved me, she was going out of her way to say that not only had she never loved me, but nothing about our relationship was real and she had never had any feelings for me. I had to assert myself and say that she could convince herself of whatever she needs to convince herself in order to do what she has done to our relationship, but she will not take away my memories of things I know that are real. That is one of the inconvenient things about being in a genuine relationship for someone with these conditions, they are not in control of the perceptions of their partner. As much as they try, they can not erase their believes. Maybe this is why they find emotional abuse so acceptable. But me claiming the right to retain my memories was not good enough for her. She really wants to erase the altogether. But she won’t have them. She can not unsay the things she has said, unlaugh our little joke, unwrite her letters, and undo all of our moment. I will cling to those genuine memories. She will not undermine them. It was a beautiful relationship that fell victim to this terrible condition.

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A close friend’s whose wife has bipolar does this to him regularly. Each time he takes it as real, its heartbreaking to see how it has affected him over the years.

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Carlie,
What an extremely difficult situation you are dealing with. You are frustrated, humiliated, and discouraged.
First of all, it is not your fault even when your son and husband blame you for things. There was a lot of tension with my husband the first time our daughter had a psychotic break. They both need to take responsibility for their own actions.
Second, if you are able to find a good therapist to work through these hard relationships would be important. Have your connected with a Resource Specialist with NAMI in your area? Both times I was well supported by two different RS from NAMI. Are you aware of the LEAP method taught by Dr Amador? He has a book on it and also video presentations online. My coach said one time, "Don’t look at what you CAN NOT do but what you CAN do. You are worthy and valuable!

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Hi Carly, My son is still in jail, he is mostly in solitary which tells me his behavior is not good with the other inmates. I did hire a lawyer to help get him in mental health courts but the lawyer never calls me back. My son called yesterday morning from jail, they allow him to call two times a week, sounded angry and said he wants a different lawyer, that this lawyer never sees him, and he said that I did this to him. He also sounded jealous of me and said that I was having such a good life! Anyways he did not sound medicated and is rotting away in jail, getting worse, if that is possible. I am very scared for him to get out and as he is unstable and will most likely be homeless. I can not take care of him anymore like I used to. I would drive him places, bring him food and clean his condo that my husband and I provided for him for the last 5 years. He is not able to go back there, he has stolen from all the neighbors and harassed them, calling them names and the grand finale was hitting my husband with a metal pole in the head. My husband was able to grab the pole and did not get badly injured, fortunately. Anyways I know he did this because he is very sick, he had never done that when he was medicated. I am very sad for him, as you know it is a hopeless feeling and awful to be scared of your own child. How is your son doing, is he still in jail? My heart goes out to all of us dealing with his terrible disease. I know it is hard, but we have to take care of ourselves. Take care and lots of hugs to you.

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Hi Irene, my son after over a year in jail and isolation he was discharged to the psychiatric hospital. Grateful they are talking to me and I’m his guardian advocate- hopefully they will start treatment and referral to state hospital- he’s not well- they are extending his baker act- praying for the best- I won’t see him until he has some stability- take care carlyb

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Thanks Carly for the update. My son is on 4 months in jail in isolation. I have hired a lawyer but they still don t have a plan to send him anywhere for treatment. I feel so heartbroken for him and I know he is just getting worse in isolation. I pray for both our sons and am glad to hear that your son is finally getting the treatment he needs. It is so hard to know they are rotting away in jail isolation with no treatment. Please keep me posted. 🩷

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I does suck that there isn’t a lot of regular help for those with severe mental illness. My mother worked in a state mental hospital back in 1973 when I was a teen, she was appalled at the lack of care for the patients and caregivers prior to the hospital. And the truth was, there were not many visitors there, most patients were “forgotten” by their friends and families. It has been decades without good management available for those stricken with the disease. Most state mental hospitals were closed down in the last decades because communities were supposed to take over providing care for non-criminals.

It took years to get my daughter stably onto meds using the support available from courts, police, hospitals, NAMI and this site. It wore me out and I got sick trying to help, but we ended up with a good result.

Self-care is the most important thing, in my opinion, that caregivers can do. YOU can make improvements in your own health and mentality. That is so important to do, otherwise the burdens of severe illness will wear you away.

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Irene, my son was released from over a year in jail. Mostly in isolation-:weary:. He was sent from jail to psychiatric hospital on a baker act and was found incompetent- hopefully they will help.

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