Family and Caregiver Schizophrenia Discussion Forum

How has this changed you?

Hi Selena, I do know what you mean about you and your husband trying to get back to yourselves. The first day of NAMI’s Family to Family class, they say getting back our own lives is one of our main goals.

Hearing our lives were important helped me because it gave me permission to work to place my son’s situation in perspective Instead of it being the center of everything. It took some time to get our lives back on track. I still remember the first time they told us in class that we would see progress in our family members as they learn to cope with having schizophrenia, but it would take years. I think all of us in the class were a bit a stunned- schizophrenia is a long process.

We all get there down different paths. Another thing we were taught In FtF is to reach out to others for ideas and suggestions. Every response won’t be the one you need, but if one response is, that can change everything and help you and your family member move forward. Good luck and welcome to the forum!

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Very sad to see my family member unmedicated and deteriorating and seeing me as the enemy. I feel the hospital fails severely mentally ill patients and their families since they will release them as long as they are not a danger to themselves or others! Basically as long as they say they aren’t suicidal or homicidal the hospital will release them…doesn’t matter about other symptoms. The “system” sucks.

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Hi Sue. Things have been pretty quiet here for the last month–a real turnaround. However, the other day I asked him to clean his bathroom and he went ballistic. It was a bad day for me lol. His stable behavior didn’t matter. Anything that makes him angry sets him off and he goes from no symptoms to irrational. I’m sorry to hear about your husband. Glad it was a good outcome, but very difficult for you I’m sure. The issues of mental illness and addiction are closely related and I talk about it as much as I can with my other kids. The legalization of marijuana is terrifying. The risk of triggering psychosis is so real, especially for those who have serious MI in their family. I am terrified for my sons future. It is hard to see other families whose kids are just fine. My son is working and was a very disciplined person before getting ill–it seems to be helping him. Hopefully Christina’s good nature makes it easy to maintain friendships. My son struggles with that.

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Hi Selena. I understand the devastation this causes in relationships. It’s a given that couples often handle this crisis differently and it puts a ton of strain on a marriage. My husband is so strong and has such a real sense of himself. He is funny and can lighten a bad day. He was strong during my son’s most acute times. But I know he doesn’t understand how destroyed and altered I am. I’m depressed and have also lost my sense of self. It’s very scary to lose yourself and feel Iike you are a ghost–but that’s how I feel. My husband is so hopeful about the future and has all sorts of plans for retirement. But I’m just waiting for the next disaster. I am badly in need of a good counselor, as are you I’m sure. Covid has made this hard to do, bc I’m not going to talk to a stranger over Zoom lol. Stay strong as possible. Consider medication for yourself if you are depressed–it helped me tremendously.

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Thank you, hope, for the warm welcome and the good advice. I hope we can stay on track and put our situation into perspective.

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Hi Grace,
Thanks for the response… We live just below Brattleboro, VT— mental health services are disappearing from communities and guess what?? They are building another, new regional psychiatric hospital… private and for profit of course.
This totally goes away from the promise of community programs… all about warehousing… If your son gets angry leaving the room a good thing. These are such insane times. Stay in touch and thanks… Sue

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I love your response pixelcat. I guess my faith may not have been as solid as I believed. I feel like I begged and begged God to “save” my son, but the answer was no. I was always terrified of this specific illness. A young man with sz murdered his mother down the road. Many years ago I watched a show where a woman was replicating the voices she heard on a digital recording and it was haunting to watch–I never forgot it. Hopefully, I can get back on track with my maker!

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Hi Sue. I wanted to thank you for the clarity and painful honesty in your post. There are many hard truths to face when dealing with a mentally ill family member that you touch on. Ive been dealing with my twin’s schizophrenia for over 30 years and I still have difficulty dealing with the reality that many of the dreams I once had are gone. My twin still believes in a miracle cure. That a treatment that will come along will give him back his ambition- his teenage girlfriend he had many years ago- and his ability to process information without the voices he has. I however- do not have faith that his illness will change. Nor will his behavior. I have asked him multiple times to stop the verbal abuse and overall hostility over the years. You’re right when you said that everyone has a bar they come to where they have to decide if they want to follow their loved one to that dark place. I could not. I had to detach myself. That decision led me to socially isolate for years. I couldn’t envision anyone understanding my choice to detach from my own twin. You’re right when you say that very few people understand the choices we as family members or friends are confronted with every day- while having someone with mental illness in our lives. Or the effects it has to maintain a degree of patience and understanding over period of time. I wish my brothers illness didn’t affect my own ambition or enthusiasm in my own life. But it has. The first 20-30 years of my life were filled with violence and verbal abuse. It’s no wonder I have chosen to spend most of the past 20 years alone.
I am sorry for the loss of your son.

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I kept thinking about the question and my initial impulse every time was to say that I’ve found myself more willing to talk about sz and mental illness in general nowadays, after 10+ years with my untreated, absolutely zero insight, isn’t sick doesn’t need help MI partner than I ever was coming from my ex who I was also with for 10 years who was diagnosed paranoid sz, had full insight, has been in clozapine since an early age, knew how to ask me if there were other people in the room and when it was time to take some meds… but I never once acknowledged that outside of our home or outside of his family (who were super tuned in and supportive). I had just always felt that stigma I guess, and really wanted to be able to protect his privacy…
Now here I am, years and years later, more than happy to talk to anybody that will listen about MI and sz…
Yet I keep coming across people posting about loosing themselves and then I can’t help myself from tumbling into a repeated and same process in my mind where I’m stepping back and looking at myself and it’s always the same: I never thought it was possible. I’m too tough. I’ve already been through too much. There’s nothing that could ever steal me from myself!.. and the reality hits me again. Years of the same painful and hurtful verbal abuse, the physical altercations we muscle through, always telling myself it’s the disease and not the person and trying like hell to change or manage MY responses but bracing for the next explosion that inevitably leaves me sucking all my air back in trying to regain my composure while he strolled back in ten minutes later like nothing happened, up all night never sleeping because he had an episode and tore out of the house to who knows where to do who knows what and I’m just supposed to pretend it’s all ok, never a courtesy call, no communication, rarely getting a chance to have a meaningful conversation, fighting every single time the regular stuff that most of us do every day, every week, every month have to get done and for what reason I still to this day have not figured out what that impulse is or why he insists and is compelled to do that…(some kind of control thing? :woman_shrugging:t2:)
So I keep thinking I’ll never loose myself but I’m actually not being honest. Not completely. Not with myself. I have a handful of close friends, all very different and are close to me each for their own valuable reasons as people, but mostly because each is ultimately one of the most genuine and kindest people I’ve ever met, and each of those relationships of mine are very long term. And yet, nowadays I’m finding, not only have I realized I’ve been isolating now for a number of years but I also am having a hard time connecting with my oldest and dearest friends even when we get the chance. I simply don’t know how anymore. And when I do, there’s always criticism and skepticism and accusations at home that are just draining on my soul and my mind and it doesn’t stop there, it’s not just that I don’t seem to know how to act anymore even with the people dearest to ME but I won’t talk to the bus driver or the mail man or the checkout clerk just to save myself an earful of absurd paranoid shit…,
And so if I’m honest, yes. I have lost a lot of me. The me I’ve never ever had to question in all of my life. And I just feel somehow… gone. Like my life has become only this other person and it’s a person who doesn’t even regard ME (or thinks I’m an imposter in our own home. Yeah. That’s an oldie but goodie.) Sigh. I kept reading the question and thinking of all the positive changes that this has made for me, for us, like I said, being willing to talk about MI openly and the such, but I’m seeing now it’s almost just my own desperation. Desperation at loosing the best person in my life. Me. I always thought my love and passion and strength would be enough for the two of us… I’m just… tiring to be always treated like the bad guy or the asshole when all I’m trying to do is maintain slivers of normalcy for myself. Sigh. You know what? And I’ll do it again tomorrow.
Thanks guys for being here.

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It’s late. I can’t sleep- but I keep thinking about this thread/post. I don’t know how a person comes in contact with a loved one with schizophrenia and DOESN’T lose a huge part of themselves. First of all- many of us were expected to put a hold on our life plans to accommodate the mentally ill person in our lives. I was asked to put aside my anger for the times my twin physically attacked me. For needing surgery after one of his attacks. I was angry and frustrated when my brother got me fired from a job. When he threatened a roommate and had me thrown out of my apartment. When he accused a lifelong friend of being a pedophile at her job. When you deal with schizophrenia- the first rule is avoid any heated conflict- and I have. But the price was deep and repressed anger on my behalf. How does a person NOT feel they’re drowning emotionally and inevitably lose their way under these circumstances? I know others also question their own sanity on occasion- and I get it. The feelings of over-responsibility- the loneliness. I felt I HAD to be perfect at all times to match the feelings of urgency I felt for my brother. I HAD to forgive. I HAD to lift him up- always. I HAD to postpone my dreams to build him up after each hospital stay. In my alcoholic family- I didn’t feel like there was anyone else to help him. I HAD to allow him to paint himself as the victim. I felt controlled by the expectations of others that I- as my brothers twin- take care of him. Despite my overwhelming impulse to move- change my name- dye my hair and become a monk. The INSANITY of expectations we face- along with the feelings of over-responsibility for our sick loved ones. I always felt like “the asshole” between the two of us because I wasn’t sick. Not only wasn’t I sick- but I deeply resented being in this position of over-responsibility. Taking care of my brother was a thankless job. For decades. Like you- I just search for basic slivers of normalcy. Whatever "normal’ is- in 2020 anyway. I isolate as well. Have for years because I don’t expect others to understand what this feels like. I simply got to a point where I had found my limit. I had had it with the abuse and the cruel behavior. I drew a hard line and have stuck to it. But I still hear about my perceived indifference and cruelty by detaching from my brother. From by brothers/sisters. From my father before he passed. He didn’t understand the basic idea that I simply did not want any further violence in my life. If that makes me an asshole- than I guess im an asshole. There’s a lesson here somewhere about why I feel a life that suffers has more meaning than someone who isn’t sick. I don’t want to feel that hope is something I have to be sorry for.

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I feel you, and I am getting to that point. It’s easy to say “don’t help those who aren’t helping themselves”, but when you love the person and you know they are sick, it’s hard to detach. I am still not totally there, despite abuse and violence. But I’m getting there. He’s out of psych ward tomorrow. I paid for a motel for a week where he’s supposed to get a case manager. He’s refused outpatient referrals and meds. I don’t know. He behaved well in the ward and in jail before that…but without accountability there will be a next time. The cruelest part is that SMI turns us against the people we adore because they have turned against us. I long to be the check-out gal at the Irving who he flirts with and is nice to.

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I just got an email from someone that starts off with:

Yes, it’s that magical time of year again when the Darwin Awards are bestowed, honoring the least evolved among us. Here is the glorious WINNER:

  1. When his 38 caliber revolver failed to fire at his intended victim during a hold-up in Long Beach , California would-be robber James Elliot did something that can only inspire wonder. He peered down the barrel and tried the trigger again. This time it worked.

It’s a list of things people do to themselves that result in self-harm, usually in the commission of a crime. They’re called “Darwin Awards” because these people supposedly will not live to reproduce.

I never thought Darwin Awards were funny – you’d have to be really unfeeling to think that – but now I think that what some people think is stupid is probably mental illness.

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“Without accountability…”
Exactly! I’ve been chewing on that same phrase for what? Years… because how are we realistically supposed to expect accountability from a sick loved one who’s reality is not the same as the rest of us, a lot of us at least, share and live in? Yet somehow I still to this day can’t get myself to completely exempt my loved one for his dastardly, grade A f***ed up actions that brought HUGE repercussions on the rest of us, our families… I find myself often thinking “I don’t CARE how sick you are, at least acknowledge SOMETHING!! Show or convey SOME kind of legitimate genuine remorse or concern or shame…” (But that requires empathy, another thread I’ve been pondering, and as far as I can see, his reality dictates: Deny,Deny,Deny! THAT is not real, YOU make that up! you’re the one that etc. )… And it DOES make me angry… the deep and repressed kind… just as Fefifofum mentioned…and simply so sad.
Fefifofum, thank you so much for that post. I love that people are stressing that there’s no reason to feel guilt for putting our own health first. Ever. And having the strength to do that is immensely admirable. (Big nod to @anotherbeliever too!) That was huge.
And still… Guess what folks! I’ll do it again tomorrow! Sigh…
Stay strong, be good to yourselves.
I’ve told myself I’m going to start doing one small thing a day just for me. I’ve decided tomorrow I’m going to bake a whole pineapple in my oven. If the bottom heating element doesn’t shatter… (I’ve learned to expect these things in life! Or at least expect nothing to ever, ever go as planned!) I’ve never done it. How much you wanna bet it’s going to be DE-licious!?! Find joy and peace in the little things my friends! And may you never suffer guilt, as Fefifofum says!

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This thread has been so helpful to me as I navigate my own feelings. My loved one now has a diagnosis of bipolar 1 with psychotic traits and adjustment disorder with (a whole laundry list). He’s agreed to medication, so perhaps it’s a mood disorder not SZ, which gives me hope for management…if he sticks to it. But now I’m dealing with rage and judgement of friends and family and my grown sons who had not done the work I’ve done to learn about SMI. He’s out of hospital and it’s as if last 6 months never happened. It’s bizarre. But I had to put him in JAIL. He’s traumatized. How do people come back from all this? He’s trying to get benefits, etc., and I’m loosely involved as his agent, and all the love is there…but I honestly don’t know how to live with all of this. He’s had a religious conversion and I frankly wish he could find a contemplative Catholic monastery and become a lay monk. I think it is what he really wants and would be the kind of ritualistic, quiet, religious life that might keep him sane. But he’s 56. There are so few answers out there, and so much falls upon so few. I cannot tell you how grateful I am to hear your experiences. They have saved me.

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Hi @Gennyg134 . I think that the answer to your question is: Slowly, and one baby step at a time. Yes, this site is a great place for all of us.

You said, “I honestly don’t know how to live with all of this.” Yes, that is true for almost everyone who suddenly finds themselves caring for a person with a severe mental illness. There is no rulebook, no ready made solution, even doctors and social workers and judges have trouble deciding what to do and how to live with all of this. We have to just do the best we can with what we know and what we feel in our hearts.

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I think a huge factor in “coming back” after a loved one’s diagnosis is how well you deal with anger. Anger at life. At God- or whatever you may believe in. Anger towards the person with mental illness and anger at yourself. We as loved one’s- are faced with extraordinary circumstances when confronted with the severity of a diagnosis of schizophrenia. I went to great lengths to conceal my anger and pain to create a smooth transition into our family’s new normal- post diagnosis. Since this is a forum for family and caregivers- I can tell you guys exactly how I felt when my twin was diagnosed schizophrenic. I felt fucked over. It felt like a sentence. I was bullshit I had to put aside every attack- every insult my brother made to do the “right thing” for my family. For him. At the time- I was overwhelmed and depressed because I had no idea how to respond to the expectations that were suddenly thrust upon me.

So yes. Being in touch with those ugly emotions is a big key to holding onto yourself during this maelstrom. There isn’t a graceful emotional transition when a loved one is diagnosed with schizophrenia. So please- don’t try.

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How were you able to set up a plan for your daughter after you are gone? I am wondering what my plan is going to be after my mom dies. She is 84 and my brother is 55. I am 57 and will have to make a plan. Right now my mom’s aide takes care of everything related to him including giving him medication and checking on the state of his apartment ( which is usually a mess). He will not be able to live on his own once my mom is gone.
I would like advice on what options I should look into

I was able to buy a life insurance policy on myself, as I am in relatively good health. I started a trust to receive the life insurance money, and named my son and my youngest sister-in law as trustees. My home will pass to the trust, as will any other assets I have. The home will be included in the trust and maintained by my son until my daughter dies then it will pass to my sons. The trust funds assisted by the rental income from my back house rental will allow my husband and my daughter to continue to live in the house, and I hope it will all go OK. My husband has agreed to follow my wishes should I die before him. I hope he will, as otherwise my will is invalid as far as the house goes, since Florida law gives a wife’s possessions to the husband and he COULD sell it out from under my daughter. But in that case, the life insurance policy will still go to the trust so there will be money for her, though not a lifelong residence.

The lawyer that I hired to do my papers gave me his services for free in the end since he felt for my situation with my daughter and her illness and my husband and his alcoholism. He suggested I stay married to my husband as selling the house would jeopardize the future since it has guaranteed income. At that time, I was fed up and wanted a divorce. I am mostly managing my husband and his alcoholism (with medical marijuana which he began under my insistence last year) as I am managing my daughter’s medication and life since I asked the judge for forced medication almost 2 years ago. Everyone’s quality of life is greatly improved.

I didn’t count on the lawyer doing the work for me pro bono, that was a blessing I didn’t expect.

The lawyer made all of the suggestions I implemented, I wouldn’t have known exactly what to do otherwise.

I highly suggest getting help to make suggestions for your family to be cared for as far into the future as you can.

I have done a trust already. When my mom dies I am the trustee and I have control over all the assets. I do not want any assets to go to my brother because he cannot manage money at all. Also if he has no income besides disability then if he needed to go into a nursing home then medicaid will cover it.
My brother will not be able to live on his own without people checking up on him and providing him with food. He will have to live in a facility of some kind where he could get meals. He does nothing on his own. He is not capable of anything.

Boy, you are right there. It does feel like a sentence.

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