Hi, my son was diagnosed in 2023. Suddenly came on. Prior to that we had a young man that was a straight A, honor society, funny, compassionate, always chatty and willing to give a hug. Now we have a son who has completely distanced himself from us. talking is minimal, to hi and by and occasional talk about something new he is trying to distract himself with (currently gardening) but that is it. He will not say I love you anymore and definitely no hugs, yet he can with his girlfriend and that confuses us. He is a little off with her too (by off, I mean not his old self and a bit awkward) but he still tells her he loves her, talks with her and hugs her. WE have never had a bad relationship. He was always a good kid, so I never had big arguments with him over anything or struggles. I have no idea why the lack of communication and affection shown can be shown to his girlfriend but not to his family. I miss my boy! Is this normal?
Is your son currently medicated? Are his symptoms otherwise being managed? Has he known this girlfriend since before being diagnosed? Schizophrenia can lead to alienation and issues with family. There may be delusions involving you that he’s not expressing. I’m not surprised he is favoring his girlfriend, especially if he was close to her since before his presumed psychotic break. Don’t discount the powerful force sex exerts at that age. Even the severely mentally ill have the same needs in that regard as any other young person.
No doubt others with more experience with family dynamics will respond to your other concerns. Your boy is still there, he just sounds overwhelmed with what is going on in his brain. Schizophrenia can be all-consuming and exhausting, meds can have unwanted side effects. Please educate and try to be kind to yourself, for his sake as well as your own.
Yes, changes in personality especially towards family are unfortunately normal with schizophrenia. The doctors talk of “positive” symptoms and “negative” symptoms i.e. those traits that are gained or lost with this illness. The positive symptoms my daughter had got the most attention (delusions and voices), but the negative symptoms (lack of interest, lack of hygiene and lack of communication) hurt me the most.
I am lucky that my daughter’s new life after years of psychosis saw many of both her positive and negative symptoms resolve and now she again tells me daily that she loves me. There were years when she couldn’t/didn’t say that, and in fact acted as if she could barely stand me or her step father.
This is a long battle, be kind to yourself and your son. He is still there, but is battling his own mind.
He is medicated. I am not sure what he is on is correct though. They initially had him on something for his nerves and the something for his anxiety/ocd, but then added the antipsychotic. The antipsychotic they had him on was abilify and it made him feel awful all day long, so he asked them to take him off of it and just try the anxiety/ocd med for a while first to see if that would work. It has not done enough and I believe he needs to be back on an antipsychotic, but now he is over 18, and I have no access to his records or ability to speak with his docs. He removed me as soon as he turned 18. This all happened too fast for me to get medical power of attorney for him and since currently he is not a danger to himself or others, there is nothing I can do to force it. I worry that he will discontinue meds at some point if he does not feel some improvement. I did see him take his meds the other day, so that was reassuring.I am just praying that they get his meds right soon, so he can feel some relief. It is so hard to watch him struggle and not be able to help him, or hug him. He has removed all sentimental things and anyt items in his room that were once items he liked and held onto. He has also removed all photos from his phone. He sent me them all before deleting them, just in case I wanted them*.* I guess that is good. One day I came home and he was buzzing off his beloved hair. It’s like anything that ties him to anything of his past he is removing. He is a senior in high school. He is a month and 1/2 from finishing, and I am more worried that he gets his mental health in order than I am about him finishing school, but I would be lying if I was not sad about him doing so well all his life, almost effortlessly, and now being in a situation where he may not even get through it. He is working on it little by little online, as the school made accomodations for him, but it is still a lot. He said if he graduates he will not walk, just go into school afterwards to collect his diploma.
I long for an I love you or a hug. I pray we get there too someday. We have always had a great relationship. He was a joy to raise, never any issues, and always so loving. That is what makes this distance from him even harder.
I am truly glad that he intends to graduate high school. That will help him work, and working is what kept my daughter connected to the world despite the problems she had . Perhaps that desire to work is what helped her conquer her own mind. I will never know for sure.
I am sorry that you were not able to get medical power of attorney before he turned 18. You can just hope that your son is able to make the right choices regarding his own health. I am very sorry that you feel as if you lost him, but with a diploma he should be better able to fend for himself.
My friend’s son has never really become capable at life after schiz. My daughter and her son got ill about the same time, they are nearly the same age. I met the mom in the NAMI Family to Family Class which was sooooooo good for me. He is still on medication, but is living in a homeless shelter, untrusting of his mom. She misses him daily, it’s been 7 years since he lived with her and was doing well.
Did your son have an initial psychotic episode? I assume so if he was prescribed an antipsychotic. Schizophrenia often presents most intensely in the aftermath of the first psychotic break, and the apparent brain rewiring that happens as a result. Medications can also alter the brain and its chemistry, hopefully for the good, but there can be a lot of suffering before the right combination of treatments is found, and the side effects of some drugs can be problematic. For some lucky few, it can take months. For others, it can take years or never happens. Non-med compliance is a perennial problem.
A young person who is only a few years beyond puberty, like your son, can exhibit the kind of behavior you are describing. In males, schizophrenia usually becomes apparent in the late teens and early twenties. It is as if the brain, in the massive reboot that normally goes on during adolescence, “turns on” schizophrenia in those who have a genetic or behavioral predisposition for it. The science is still not clear on how much of it is nature (genes) versus environmental or experiential. My feeling is that genes are the main driver, but that’s just me.
This all sounds technical, and that may not be much consolation for the emotional grief you are currently experiencing. You sometimes may have the feeling that someone alien is posing as your son, as you describe how he is rejecting any signs of his earlier life and emotional ties to you. I understand the heartbreak. But please know that none of this is intentional, none of it is anyone’s fault.
To help you better cope as you gather information and look for ways to support him, even if you no longer have access to his records, focus on understanding the disorder itself. Learn the LEAP (Dr. Amador) method to try to reconnect with him. Think seriously about maintaining your own mental health since he WILL need you in the months and years to come. You will find many resources and supportive people on this site.
I’d also like to mention the most recent test that help people zero in on the right drug combination based on their DNA. I have no experience with this directly, but others on this site have said it was a lifesaver:
Thank you for the info =)
Dear Missmyboy,
So sorry to hear about your son. His personality sounds very much like my wife who is suffering from psychosis. She was the kindest, sweetest soul I ever met. Smart as a whip, always had interesting things to say and talk about. In our 32 years of marriage we never had a loss for words. Love and hugs every day. Now the condition that you speak of about your son mirrors my experience with my wife. Distant, quiet, somewhat catatonic in her mannerism, alone most of the time and constantly engaged in driving, biking, reading as a means of coping. She cannot travel anymore or be around large gatherings (and she was a real social person). I don’t know what normal is anymore but your experience with your son both pre- and post- diagnosis mirrors what I am experiencing with my wife. So, not surprised. The best medicine that I’ve found is ongoing love, warmth and support for her. I’m sure your son knows and feels your family’s endless love for him. I strongly believe this is important to his every day life. As one person who explained his psychosis put it: Remember caregivers, it’s still me in here. I pray for your family and your son to cope well and heal. Best of luck. It can be a long, tough journey.
Kevin
“It’s still me in here.”
Wise words, and very true, even if that person is literally unable to express on the outside what is going on on the inside. Sometimes it is delusion and psychosis, other times it is something more like normal, but the ability to communicate is often severely limited or non-existent.
Praying for your son. My mom’s mental illness came on when she was very young and was healed but i believe she dealt with it all her life. She just didn’t share anything. Fast forward, 30 years later, it came back in 2022. She still didn’t communicate what was going on and the doctors had no clue. I thought she was getting better but she was actually getting worse. I was exhausted and confused trying to figure out what was happening. Anyway, she should have been admitted. The last wknd she was alive, she was very jumpy and all over the place. It was horrible. I’ve dealt with so much guilt. If I could do it again, I would have admitted her when that wknd.
well you cant give up. abilify kept my son out of psychosis, but he didn’t like it. Currently trying Inveega Sustena and increased dose recently, and
for first time in a long while, he is watching TV, he hasn’t wanted to watch a movie or tv in years.
Mine wasn’t seriously on meds till about 25, and fought them since 16. have had a lot of ups and downs. Lost all interest in all sports and activities he did, socializing, school, ect.
We pushed to get diploma with the IEP and school remedial classes, but
he refused to go to graduation too. Sad. Just be glad he commuinicates
with anyone. Sometimes this seems like a devil possesion and they have
someone telling them not to talk to us. My son told me he loves me this
week, in the past many times he thought Im the enemy and tried to kill me, especially when not on meds. Im still here, and only one who helps him,
should get help with care givers from time to time.