Family and Caregiver Schizophrenia Discussion Forum

This board is not helpful to me

We have a really good thread that I like to visit when I am sad - let me find it for you.

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I’m sorry that you haven’t felt supported, the problem is (I think) that not everyone does relate to what any of us post on any given day, I would not view that personally, I have been on this forum for a few years and sometimes I get a lot of good support and sometimes I get nothing. I do know from the time I have spent here there are a lot of good people here going through similar situations, maybe not like your own (or my own) but different. Many times (as wordy as I can be) I can’t find the right words to respond to somebody. I will look for your posts and see if there is anything I can relate to and respond as best as I can. I wish you well.

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This is my happy thread… a very long one, good vids at front end… started it over two years ago

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LOL, I have two very sick med resistant SZs, my daughter was born with the shit from her mother, my wife of 30 years… many think they have it bad, LOL…

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How to deal with my sadness of my sons schizophrenia

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Short posts with little to no useful or actionable information, don’t give people much to respond to.

Elicited little response, because most everyone with a boyfriend posting here has a similar story. If you open up and get more specific, you might get more support.

I have no idea who Jay is from this post, I assume your boyfriend given other posts. While sad to hear, you don’t give the forum a call to action here. When people blurt out personal information inappropriately at random without context or purpose, they tend to get ignored. Sorry. It’s what I might do if a bag lady blurted the same out on a street corner. I might even cross to the other side of the street.

As the not short nor particularly snide reply for this forum states, Abilify is a common medication for schizophrenia. It’s also common for schizoaffective and bipolar disorders, dementia and as an add-on for antidepressants. There are dozens if not hundreds or thousands of threads where this medication is discussed. I’ve participated in some of them. What you learn quickly is everyone’s experience is different. @GSSP’s wife had a particularly bad reaction to it, while others (my father included for dementia) have had more positive or neutral results. If you have a specific question ask away, but in this forum it’s a bit like asking “do any of you drink water and like breathing regularly? Or drink either Coke or Pepsi?” If you asked these questions of passerby’s on the street you shouldn’t be surprised that the reaction may muted or have an undertone of “well, duh.”

I believe you also posted your email address in the forum unsolicited which isn’t done here much. Some, myself included, are private about their situations and avoid personal disclosures or exchanges of email addresses. There’s a private messaging feature of the forum that’s a bit more private than exchanging email addresses or posting phone numbers on proverbial bathroom walls.

I’m sorry you didn’t get the reaction you’d like out of the forum. If you work on understanding conventions of how the forum operates, and ask meaningful questions rather than making non-sequitor statements, you may get better responses and more support.

Sorry to be blunt, but since you didn’t seem to understand why you got these reactions, I felt I had to spell it out. @GSSP is blunt and sometimes flippant, but he has a right to be. The reality is many people here need to toughen up if they want to be effective caregivers, and if not, whether they want to hear it or not, might be better off to heed his advice and run far far away.

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Poor lady. My son was placed on Abilify during his first hospital stay. He got horrible TDK. That whole experience convinced him antipsychotic s damage his brain. The Abili by p!us Haldol was really horrible for him. So now he will only take Zyprexia when court ordered. Currently he is doing pretty well on a protein rich diet and some supplement s

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@susan031367 I noticed your posts didn’t have any responses so I replied to your posts. This board can be very supportive and I think if you shared a bit more and responded when others post responses to your questions that would help you feel more connected. Also, NAMI is a great support group to attend in your local area. Many are meeting virtually. I hope you will look into that so you can get some support offline. And it’s taken me a long to realize that it is nearly impossible to have a healthy relationship with someone who suffers from a SMI and refuses to make staying in treatment a priority. Dual diagnosis of SMI plus substance abuse only complicates matters. @GSSP was right in it is very expensive to do certain things to help a love one. Depending on the state you live in you could try to get guardianship or conservatorship over your bf. Most of the time an attorney is needed to do this. Other people posted about getting heir drivers license restricted or flagged where a psychiatrist has to sign off saying they are adhering to their treatment plan. @Maggotbrane has posted a lot on this board with a lot of insight from a different perspective and has that noted on each post. I find the posts very helpful. I also think that given you are now sober your health should be your priority and you wouldn’t want to relapse due to the stress of your relationship with your bf. A lot of caregivers on here see a therapist regularly to help cope with all the challenges they face. I hope you are feeling more supported.

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@Maggotbrane Thanks for your cold and calculated response. I dont need you to post all of my posts and defend the reasons why I got little response. I think you need more to do.

I’ll turn this around. You have not been helpful, nor patient, nor respectful to this board.

I take pains to invest time to help people here and point out things that they might not have considered, and generally people appreciate me taking the time for detailed and considered answers they might not get elsewhere.

This is a place to get help, support and answers. If you just want to vent and have temper tantrums, and have your behavior validated, I’m sorry to say—for all my efforts—I can’t help you.

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Then I would appreciate it if you didn’t reply to any of my posts. Thanks.

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Thanks. Nice. Thia board is really great.

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I often read the posts but feel that I have nothing constructive to add. When I have had a similar experience, or dealt with the same med issues, or can offer sympathy and hope I do.

Like others have said, sometimes I need a break from the discussion. There are many people on this forum who are experiencing more trying times than I am. Sometimes what I read frightens me - what if my daughter stopped taking her meds and became aggressive and destructive? Or became suicidal again? The posts can be triggering - bringing to mind extremely painful times.

I’m sorry you don’t feel supported. Sometimes the answers are not quite what we want to hear. I hope that moving forward you can benefit from the collective wisdom the forum has to offer.

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In these discussions we need to be open minded take what resonates with you and let the rest fall until we need it. There is no direct answer to any question - I find each and everyone of you amazing and I thank you for being on this journey with me🥰

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@susan031367 This is a safe forum in which people can vent their frustration and grief in regards to dealing with mental illness, whether for themselves and/or family members. There is often an overwhelming sense of loss – feeling frustrated that things aren’t different, and feeling frustrated that we have no control over this situation, and feeling worried about our loved ones. One can be in any of the stages at any time, sometimes simultaneously. Hurt, Shock, Numbness, Denial, Emotional Outbursts, Anger, Fear, Confusion, Anxiety, Loneliness, Guilt, Isolation … Once we have adjusted, we can often move on and experience some stages that give us hope, including helping others. Every individual has a unique approach. It may be something you cannot identify with, in which case you can choose to simply ignore it. Regardless of approach, the comments are intended to be helpful. No doubt you reached out because you were needing to be heard, and wanting to connect with people that could understand the situation and commiserate with the pain you are feeling. In that regard, everyone here has experienced the loss associated with mental illness, and it should give you hope – that many have adjusted even though the loss never goes away. With a little help, you can adjust, too. Hang in there, and you will discover new strengths, new patterns and new relationships. Wishing you all the best.

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Message me if youd like to chat!

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Of all people, we especially need to show patience with each other. Some of the persons you have criticized have the most “likes” on this Forum. Most of us truly want to help others. Empathy is important, so I apologize for any lack of that you felt. My goal is to give people information that is useful in the limited time that I have to get on this Forum (sometimes in the middle of the night). It also takes an emotional toll on me to continue to read many of the same things over and over. I have no doubt that sometimes I come across very bluntly. One of the things I had to learn in this journey is that I had (and still have) a lot to learn. I hope to help people get moving in the direction of any recovery that is possible and not waste time. I’m truly sorry if that seems insensitive. You are wished the very best and we will continue to try to help each other to the extent that you want to participate.

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For the most part, @susan031367 your friends in the “real” world, are not capable of being your friends in the world of caregiving to someone with severe mental illness. I found absolutely no help at all when my daughter first went into psychosis from my “regular” friends. Sometimes their “advice” was destructive to my situation.

The people on this forum have very big hearts, have been through the worst sort of life trying to help their loved ones with sz. Some have had large successes, some small successes, but the compassion of everyone on this site in their struggle to help, and to keep on trying to help, is amazing. Battling sz is a lifelong struggle. No not a struggle. A war.

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