Hello Everyone,
I’ve been reading the posts on here for weeks now, and they’ve been so incredibly helpful. I discovered Dr. Amador’s book through this forum, and other resources that I’m so appreciative of. Thank you all so much!
Our oldest child (he’s 25) had his first psychotic break in June, was hospitalized after 9 days home experiencing increasingly chaotic psychosis, discharged after 20 days, still completely in psychosis, but I understand that they need the bed for someone else. His delusions and hallucinations are the same as they were before he was hospitalized, it’s just that as his family, we’ve become more accustomed to them, which I think has helped create a calmer environment. He lives with my husband and I, and his two younger sisters.
He is currently agreeing to go to an outpatient clinic that I drive him to, where he sees a therapist and a psychiatrist, but it feels so tenuous; each day I feel like it could be the last that he agrees to take his meds.
It’s very hard because some of his delusions have included sexual and physical abuse by family members that I know did not happen. In the same conversation as the abuse, he’ll talk about how he was abducted by aliens, how he can remember the lights in his room, but then after that nothing–that’s how everyone can see through his eyes. The aliens did it to him.
He believes he’s the king of hell, his real name is a demon name, and we’re not his true blood family. We also know that he spends time reading online forums (like 4Chan), and following online influencers that are horrible people. People that condone hate speech, are incredibly misogynistic, conspiracy theorists, etc. I understand that delusions are delusions, but some of the things he spends time doing are worrying, especially when he thinks we’re not his real family and follows the instructions of the voices.
He gloats about how manipulative he is, and it’s maddening. He’ll tell me he’s going to lie to his doctors, and then I hear him do it, and I’m not sure how I can get the information to them that he’s lying. I’ve slipped envelopes with letters to the secretaries at the doctor’s office before, and he was incredibly suspicious–I told him it was insurance related.
I know we’re in the very new stages of this, since he’s had negative symptoms of schizophrenia for years, but the very present positive symptoms are very new for us as a family. I guess we’re just in the “terrified, no idea what we’re doing, trying to learn as much as we can as quick as we can,” new stage of all of this.
Thanks for letting me type this here and thank you for this community.
Hi GuitarMom, Welcome to the forum, so glad you found us. I’m worried about your family, you have a lot going on, and two younger sisters also at home. I am disappointed that the hospital released your son without any improvement. Recently @oldladyblue wrote that small group homes for our family members have been shut down for failure to provide medical personnel. The same system sends our family members home to us and we have no training of any kind.
Delusions can be very dangerous. Delusions are not delusions to our family members, delusions are their reality. Your family’s safety must be your priority. To be able to sleep at night in the severe years, my husband and I barricaded ourselves into our room with our large dog.
Are they treating your son with long lasting injectable anti-psychotics? I ask because if you are seeing no difference and he is on oral meds, there is a chance he is not taking his meds.
Faxing your son’s doctors is one of the “back doors” we use to keep their doctors aware of what is going on at home. Your son may not be allowing them to talk with you, but they can read your faxes.
I am worried about how much is going on in your home. You have to be careful, living with someone who has such a high degree of delusional psychosis can affect your judgement over time. I really am sorry to have to write this, but, unfortunately, over the years I have learned this is a situation for high caution.
Hello @hope , I can’t thank you enough for taking the time to write out this response. It’s been particularly hard, because I want to be empathetic to what he’s going through, but I also want to be able to clearly see what’s happening and not minimize the present risk. Thank you for pointing out that living with someone in psychosis can affect your judgment over time; I hadn’t thought of that, and it makes perfect sense. And you’re so right in saying that delusions are their reality; that’s what I’m afraid of.
The 9 days before he was hospitalized, it was constant gauging of the situation, whether to call 911 or not, which we did most days. The FIT team (our local version of CIT) would come out with the police and assess the situation, but like everyone here knows, if he wasn’t outright physically threatening us or harming himself, there wasn’t anything they could do. They told us to hide our kitchen knives and put wedges at the base of our bedroom doors. I even tried to express my concerns to the social worker that came to our home, telling her that I was scared, and she said, “It’s psychosis. It’s not your son,” with a facial expression like I was being dramatic and uncaring, which made me feel like a terrible mother for being afraid of my own kid.
Eventually, he had stopped eating and wasn’t taking his Crohn’s medication, so they were finally able to take him by ambulance.
We felt frustrated when he was sent home; like you said, you don’t have training of any kind. It’s like he wasn’t improving fast enough, so they just wanted to get him out of there because he had a home to go to and he was set up with the hospital’s outpatient behavioral health clinic.
I personally get his meds out for him and find ways to stay in the room while he’s taking them so that I can watch him take them without being too obvious; it’s exhausting, as I’m sure everyone here knows. So, I believe that he’s taking them. I do hope that eventually they switch to an LAI once they find something that seems like it’s okay for him (minimal side effects and symptom improvement). The everyday meds are torture.
Faxing is such a great tip. I’m not aware of the office having a fax number, but I’ll definitely try to look into it more thoroughly. As of right now, I think I’m going to print out my bullet list of our family’s current concerns and have a copy for the therapist and for the psychiatrist, and hand those in to the secretaries at his next appointment, which disappointingly isn’t until a week from now. We just really want someone to understand our major concerns around his interests and how his positive symptoms make us feel worried about what could possibly happen due to those interests.
There is a lot going on in our home, and I feel like you’re the first person acknowledging that to me. Thank you for that. And it sounds weird to thank you for, but honestly, thank you for telling me this is a situation for high caution. It’s actually validating to hear that.
GuitarMom,
If you get their fax numbers, there is an app called FaxFile that you can use to send faxes from your phone. Sometimes I write something on paper and take a picture of it for faxing.
I am so relieved that you are sensing the need for caution. Our Family to Family instructor ended up becoming a friend, she has been a great resource for this forum as she used to teach the new instructors. Our class had a tragedy occur, it’s written up somewhere on this forum, she has never taught again since that class. My husband and I learned early that threats should be taken seriously and its always better to learn from someone else’s mistake.
The social worker who told you it was psychosis and not your son? She will tell families the same thing after a tragedy occurs. We know it’s psychosis - psychosis is the problem. Acknowledging our fear of psychosis doesn’t mean we love our children any less. You are protecting your son by acknowledging your concerns just as you are protecting the rest of your family. People on this forum have family members in prison. As my Family to Family instructor taught our class, our medicated family members rarely commit violence. In the cases of our unmedicated family members or medication resistant family members who are experiencing severely dangerous psychosis, violence is not rare. Worse yet, we, their family, are most likely to be their victims.
Our family members can learn quickly to fake taking meds. Countless times on this forum people have told us they were sure meds were being taken only to discover later they were not. Treatment resistant psychosis is real and can also be the issue.
Take care
@hope ,
Thank you so much for telling me about FaxFile; I had never heard of that! I really hope that the office my son goes to does have a fax number, because that would be incredibly handy. I’d much rather do that than try to hand in my envelopes of information each time.
The tragedy in your Family to Family class sounds absolutely horrific. I’m so very sorry to hear that happened to that family, and the trauma it must’ve caused for everyone attending the class. My heart goes out to everyone. I do thank you for sharing it with me, though.
Thank you for this. I needed that. Reading this helped me concentrate on what I wanted to write out to my son’s care team, without feeling like a horrible mother for sharing my concerns. It’s taken me all weekend, in small bursts, to work through my letters to his psychiatrist and therapist, with a bulleted list of everything his sisters and my husband and I are concerned about. I felt like I was being dramatic before, but you’ve helped me realize that I’m not, and as a mom, it’s so important that I seriously acknowledge and report my daughters’ personal concerns.
Thank you for this, too. I’m wondering if there’s something I’m missing when it seems like he’s taking them. He doesn’t spit anything out, and I’ve even checked the garbage if he’s walked over to it and haven’t found anything. It looks like he’s taking them, but I’m terrified I’m missing something he’s doing.
Thank you again, Hope, for all of your time and advice. I truly appreciate it.
I have been on a social media break @hope. Good to see you here with some good advice.
SO SO many hugs @GuitarMom. Please do what you can to paraphrase @hope’s words.
We understand our family members are not their psychosis and we love them. But it’s precisely that which makes us worry so much. If their version of reality and ours meshed, they would never act in the ways that they do. See: Andrea Yates and so many others that have simply become a sad statistic, that family members are more likely to be hurt by family members with untreated psychosis than the rest of the population at large. By that same number, most SZ or other MI patients rarely harm others, and this is promising, but it also mean, again, that we are always on tender hooks.
Acknowledging emotions does not equate that you hold those feelings all the time OR that that is all the feelings you have toward this person or situation. I am VERY surprised that the social worker shut you down in that way. If this is a new situation and the symptoms have become more concerning to you as of late, I would do my best to make sure your feelings are remunerated to the social worker. The assumption that we are surprised by psychosis/should tolerate all the things our family member says/does to us, is ironically, the same “love conquers all” advice some people try to give to DV survivors or possible murder victims. Simply put, we do not have to tolerate all of our family members delusions, especially when it concerns our ability to feel safe or develop safety procedures for our own piece of mind.
Active listening means dealing not just with his/her patient on the case load but also their families. Saying simply: “I am scared and I have never dealt with this situation before, so please hold your comments till I say what I feel ect.” Clunky, feel free to phrase it more eloquently, but you are talking to her to ask for solutions, both for your child and yourself.
Very normal his delusions, to him very real.
My son had them and when he wouldn’t take his meds in psych ward, was mandated thru court to take them.
11 years now and put on injectable once a month, also mandated by NYS, and monitored. But he blames the shot on side affects, weight gain, fatigue. But with the pills he would always stop taking them, and end up in psych. ward.
He is on SSD, and working part time.
Very sad, because he was fine before he got schizophrenia.
One day at a time.
Thank you so very much for this reply, @katydid5088_bert .
Thank you for making me feel okay in my concern and for encouraging me to make those feelings known to my son’s care team.
This was so helpful, too. The guilt I feel is such an immense weight, so thank you for this.
Thank you so much for your reply, @serenity .
I’m so sorry that your son was fine before he got schizophrenia. I would think that it must feel so impossibly hard to witness a transition like that. My heart goes out to you.
My son wasn’t fine before his psychotic break, but I think it’s because he’s had schizophrenia for a long time and it wasn’t diagnosed. The negative symptoms of scz is how we, as my husband, myself, and his sisters, know him. It’s been such a long haul before his hospitalization and diagnosis, that it’s left my husband and I with little hope.
But like you said, one day at a time.
One hour at a time.