Hi Squid. I’m not sure if you were asking me specifically to respond but here it is…
You used the word “sedated”, which sounds like you’re attributing this to medication. In our son’s case, he often seems sedated whether on or off medication. For him, his sedation appears to be a negative symptom of his illness.
Regarding negative symptoms, from what I’ve heard and observed, anti-psychotic meds do not improve these. They only improve the positive symptoms (ex. Hallucination, delusions, paranoia).
As far as self care goes, I think this is case-by-case. From what I’ve heard, extended periods of untreated psychosis can lead to damage or trauma to the brain, so skills in this area can be lessened. I’ve also heard that the brain can do some healing once a person’s brain is “protected” by anti-psychotic meds.
Edit: If you’re referring to “self-care” as lack of hygiene, then that is also a negative symptom of the illness. I don’t know if it gets worse and worse as time goes on. Jeez I sure hope not.
Thank you Day-by-Day, yes I fear this is just the beginning, and that things will get much worse before he stops resisting medical help. He may always resist, I’m hoping not though. It seems strange to me to thank people who are in the same anguish we are, watching someone you love slowly disappear before your eyes, but I thank you all nonetheless for sharing your stories. Not feeling so alone in this helps, but I’m truly sorry any of us have to deal with this. It’s almost like mourning the loss of someone who is still alive.
@Stepmom39 I go through cycles of grief, acceptance, anger, why me/us? and then I seem to think it isn’t as bad as it can be and try to find any positives I can AND of course, hope for a recovery. There are a few people who have scz that get on this forum and talk about how they have recovered and give us advice - which helps immensely.
I have noticed it can vary widely. For us, the last five months have been the worst but we have been in a slow decline for the last three years and didn’t know it. The first psychotic break was three years ago. Then we had one in July 2017, followed by a third on Dec 15. The currents meds have dramatically slowed things for the time being and we are grateful for that but she is still symptomatic so we are waiting. So I would say it varies but usually you can see a decline overall with marked periods of devolving. We are getting better at understanding the symptoms which is helping us to get her effective treatment and to shorten the psychosis.
Yes…Medication droops. He says he “feels loopy”. He looks it. BUT, the combo he’s on took years to find, and the alternative is not acceptable to any one of us. Even son agrees on that.
Okay…that’s what I needed to understand better. I see this. He said the whispery voices are still there, and sometimes flashing images. An improvement big time for him. The delusions he can recognize sometimes. He said there’s rapid fire thoughts now too. P-doc team anticipated that his meds would need more adjustments.
The “self care”…yeah, that’s a fun one. No rhyme or reason…other than he seems often seems to lose track of how many days it has been since he’s bathed. If it seems like “yesterday”, well then he bathed “already”.
I’m still new…but have been in forums for other discussions over the years. As the subjects were not really related to anything heavy or serious (sewing clubs!!), I found a forum environment “fun and encouraging”.
Years later, I couldn’t find a forum like this when he was young and first dx, and then…well, I just didn’t want to talk to outsiders about our baby. Looking back, it foolishly felt like I was wrong to “waste” time talking to others when I needed to “fix” him.
I have therapy, etc. What I NEEDED was another mother to talk to. Someone who “gets it”.
Yeah, I enrolled him in Boy Scouts and did the mom stuff…it was obvious that he was not like the other kids.
Did I talk to the other mothers? I tried, but we couldn’t really connect. Babysit? I’m the mother you could call because I’m home. My son is now having delusions about your boy and as it seems he is starting to act on those delusions by trying to smother (literally, tried to kill!!) your son…Wow…life is not going in the direction that I thought it would.
It was easier to travel with husband and our little family.
I was very lonely though.
He didn’t ask for his dx. We didn’t anticipate this either. (I wasn’t supposed to be able to have children!!)
BUT, it’s not something a woman can discuss with other mothers at the PTA meeting. OR invite a woman over to become friends with. Do you know how many times I had to say “Not today” when plans were made? To discuss those dark subjects such as “the future”? Remind a new friend that he is NOT dangerous, he is just struggling today?
Uhh, yeah, you guys do.
And here…I can say things that I feel or think…and not be judged, or feel that I’m betraying our son.
I can ask questions that are NOT limited to the last 10 minutes of a medication check appointment.
So Dad comes home. I have a warm smile, am tickled pink, because son was up and about. He was talking to me!! Woooohooooo!!! He cleaned the kitchen cooking mess too!!!
Dad smiles at son and says “wow, you did all that? That’s great!”
Son glares. He is pissed.
That fast.
He’s pissed, but is doing everything he can to “be polite”. It’s barely working.
We interrupted his gaming.
REALLY???
Well, when talking to husband later, and note: not focusing on the pissed off aspect, but the good things that happened throughout the day…it occurred to me.
He woke manic.
And yet he turned that energy into doing something helpful, positive and productive. He talked as long as he could. He opened up more with me.
Yeah…still a positive day.
Privately, in this forum only…
I can’t imagine how it must feel for husband to come home to such a reaction.
I found myself, with tears in my eyes, telling husband quietly how much I appreciate his devotion and loyalty. He teared up too.
We exhaled…and did what we do best. Dinner and a Documentary together. Chess game between older son and Dad. Cuddle.
Younger son played his video game until bed…we left him alone, which means I checked on him.
After Jeb moved home in 2013, he had a wonderful day with his dad. He and his dad had a fun, loving conversation - it was just a brilliant day.
Jeb went to his room to nap. We got ready to eat dinner and my husband accidentally dropped a tray - Jeb emerged from his room in instant angry psychosis. The loud noise had triggered it.
Yeah, I think we’re in a period of faster decline, and since he can’t recognize his illness, and has not been hospitalized yet, there is no medication or treatment of any kind to slow it down. So all we can do is network in our city with mental health providers to come up with a plan for the next psychotic break.
Stepmom39 - First of all, welcome! Sorry for what brings you here, but glad you’re here. Secondly, my son is 17 and has been violent, somewhat as you describe. His came on when he was 7 1/2, but no formal diagnosis till later in his teen years (though he was on anti-psychotics from age 7 1/2 on till about age 9). He has choked his older brother, got arrested for that (Fall of 2016). Choked his dad and went after me with scissors (July 2017), arrested for that. He tried to kill himself after the attack and carved his arms and legs up with knives, bleed terribly all over our house. It was horrific. My son is aware of his illness and was and is medicated. He was on the wrong meds. Since the summer attack, he was away in a juvenille jail facility, got put on different meds and has been doing better. So take what you will from my experience - I understand your stepson isn’t medicated and that will be difficult to get him to a place where he will see a p-doc and take meds. If you can get him to that place, that would be a huge win. In the meantime, please understand that the violence can re-occur. We have pepper spray in the house in case of a reoccurence of violence. My son is bigger than my husband and my older son moved out of the house because of his brother’s behavior. It is not a wonderful thought to have to do something to defend yourself against your own offspring (or step-child in your case), but it might become necessary at some point. Please think ahead and have a plan. The sheriffs have been to our house countless times. My son has destroyed property as well and they refused to arrest him because it was a misdemeanor. I’m not saying that everytime he acts up, we call the police, but I can tell when it’s going to be really bad. His eyes turn dark and it’s like HE isn’t there anymore. Anything can happen at that point. I have jumped on his back, pounding on his back, trying to pry him off his dad to no avail. He’s a big, strong kid and it’s terrifying when he gets like that. Anyhow, wishing you the best and I’ll be praying for you and your family. Wishing you a peaceful day.
He doesn’t use anything that has ever come from a living thing except plants. No gelatin, no leather wallet or belt or shoes. Not even honey. Hasn’t taken any form of medicine in years, even for his chronic back pain (he has wrecked 4 cars). Medicine of any kind is going to be the hardest part of getting him long-term help. Sigh.
This my first post, but wanted to say you sound like you have good attitude. It’s encouraging he still has some friends that he sees. My son started taking medication in 5th grade and luckily still buys into it bevause he doesn’t like the voices. I am so happy to find this forum. It is so eye-opening to find so many parents going through similar things.
