Why does nobody help us?

Family
1

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!

2

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

2 Likes
3

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.

2 Likes
4

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.

3 Likes
5

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

2 Likes
6

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.

1 Like
7

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?

1 Like
8

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.