My 27 year old son was diagnosed with schizophrenia effective disorder with bipolar in December. Before that he lived on his own a couple years and decided to experiment with lsd and mushrooms. Back in may of 2020 he had a really bad trip and became paranoid and had strange thoughts about people and telling me stories of things I know did not happen. He was in a very bad car accident in December of 2020 running from “someone “ that told him to leave his own house. They put him on the psyche ward for a week and prescribed meds for him. Rispiradol. He was off work for four months and did nothing and was very down and depressed. He just started back to work this month and is feeling much better and says he really doesn’t think he needs these meds anymore now that he not doing lsd or any other drugs. I’m very nervous something is going to happen again like that and I’m kinda forcing him into getting his shot on a regular basis. Am I doing the right thing? Or should I let him try to go off his meds??? Am I doing it more for me? It was a really traumatic experience for all involved.
You are doing the right thing. If he has schizoaffective disorder, then he needs medications for the rest of his life. I will tell you of someone with schizophrenia that I know, that managed to find two jobs to work at, however he believed he no longer needed medication. He ended relapsing and losing the two jobs he worked hard to find. Make sure he stays on his meds. If meds aren’t causing any side effects, why go off of them?
I agree with @Lirik
February 2018, my son found a job he liked, thought he didn’t need meds anymore and everything was normal, quit his meds in March/April of 2018, by July of 2018 he was in full blown psychosis. Relapsed worse than ever before.
This is the time he ended up in jail.
Please get him to stay on meds, they think they’re all better, but it’s because of the meds.
thank you so much:heart:
Im in the middle of dealing with a partner who stopped taking his meds because he was feeling mentally better and didn’t like this side effects. I am at a total loss for what to do now, he is not in his right mind and very unstable.
I stumbled across this article earlier tonight, it may give you some extra perspective https://journalofethics.ama-assn.org/article/medication-refusal-schizophrenia-preventive-and-reactive-ethical-considerations/2016-06
But i agree with everyone above to help keep him on the meds!!
Definitely try the LEAP technique and listen to his concerns. I’ve been reading I Am Not Sick, I Don’t Need Help! How to Help Someone Accept Treatment and it is outstanding.
Unfortunately, the medical professionals do not tell families that relapses do damage the brain further. Also, non-adherence to medication causes even more harm to the individual. Current schizophrenia medical guidelines are to continue antipsychotic medications at the lowest effective dose. Ask your son’s psychiatrist to obtain a HIPAA consent from your son so you are able to discuss his treatment plan with him/her. Treatment plans work better if at least one family member is involved in their loved ones treatment and care.
We can totally relate to your situation. Our son is 27 and has schizoaffective disorder. He recently wanted to off his Invega injection and we talked him into just lowering the dose. Fortunately he is satisfied at this dose, but do not know for how long. I just finished reading the book: I’m not sick. I don’t need medication by Xavier Amador. It is excellent and I highly recommend it to any family member of someone with schizophrenia. It really helps you talk to your son in a manner where he feels like someone is listening, but further helps you find ways to convince them to stay on their medication. Good Luck!!
Thank you did your son do drugs also before he was diagnosed. Just curious. And I will look into this book. Thank you
Definitely read the book! I just did. My son has been a meth user for 10 years. Has stopped but still suffering from schizoaffective disorder Bi-polar type. He just switched from Olanzapine to Resperdol in order to then move next to getting the shot of that every 2 weeks. My son took the meds but sometimes took 2-3 times dosage which was dangerous for him. Hoping shot will help in that way. Keep trying until you find the right meds for him. It can takes years to do that. He will likely need meds for life. Agree with all said by others above.
Acknowledge his feelings…no one wants to be on meds! This will help him trust you more. The LEAP book (“I Am Not Sick; I Don’t Need Help”) will help you understand why people with serious mental illness won’t accept treatment or stop treatment, more than what is commonly stated that they “don’t like the way the medication makes them feel” although the latter can be part of it. The book also goes into detail about how to communicate with a person who has this “lack of insight” into his own illness and does not want treatment in order to agree upon treatment for reasons that the PERSON wants not necessarily for the reasons that YOU want (and believe to be necessary).
Getting a job or being active in some way can be helpful to persons with mental illness if the job is not too stressful. This IS a journey, so engage with your son as best you can but there is only so much that you can do since he is an adult. If he lives with you, or if you provide for any of his expenses, you DO have additional leverage.
Sometimes we experience two steps forward and one step back. Sometimes things DO get worse, but don’t give up. There IS hope for a better future! Keep us posted; you are cared about!
Thank you I’m pretty sure this is putting so much stress on our marriage I’m at wits end right now. I’m our sons advocate and trying to keep some normalcy it’s hard. I feel like I’m going crazy. Love you all and thank you all for your advice
@Sherry3 I can tell you what happened to my schizoaffective 34 yo son who went off his meds 1 week ago (lithium and Seroquel).
Major relapse. Extremely psychotic, as in incessant talking to himself/voices and manic pacing about the house and backyard. My wife and I stuck it out and did not get an involuntary psych evaluation order from the court. We were hoping against hope his brain would heal itself. Nope.
Refused, probably from paranoia, to leave the house since being discharged from the hospital 1 month ago. Yesterday I see the front door of the house open and he is gone. Not in the backyard, just gone.
An involuntary psych evaluation order was obtained and he was apprehended and taken to an ER.
Maybe going off drugs is possible, but it absolutely has to be done slowly and with 100% cooperation between the family member and their psychiatrist. If the person has anosognosia, which is all too common – maybe the norm for SZ/SZA – then from my experience they have to stay on their meds.
And, regarding LEAP: it’s fine as far as it goes. Unfortunately it won’t work if a person has no awareness of their illness and/or refuses to talk because they are smart enough to know sharing their delusions will get them into trouble. I.e. they’re thinking the less said the better, so there is no basis for LEAP because they aren’t talking. That’s why Amador has Part III in his book: Staying on Guard and Next Steps where he talks about involuntary treatment.
@Jane16 Thanks for the link. I’m going to download it and read it. This is just such a huge conundrum. They have to be on the meds, and the meds themselves are no doubt doing damage. It’s a tradeoff between the benefit of the drugs and the damage they do.
Cancer chemotherapy is probably a good analogy. The drugs kill cancer cells as well as healthy cells. Sometimes they even cure cancer. The drugs are the only option there is, otherwise one would die of the cancer for certain.
I’d submit this is a form of awareness, be it social or self-preservation that may be leveraged. And from my experience, much of this is learned from mistakes that caregivers (both amateur and “professional”) make early on or inherent stigma in society and media. People are only silent when they don’t trust who they are talking with. In my case I had a therapist I trusted, and I actively avoided talking to police or family or workmates about my delusions with good reason. And compartmentalization is the primary coping skill I required to function and thrive in recovery.
I think involuntary commitment and injectable medication has its place and Dr. Amador’s ideas could certainly be expanded, but there are avenues for gaining trust that have little to do with understanding delusions, but negotiating for wants, needs and freedoms.
As far as delusions go, I feel it’s far less important that caregivers or even therapists know and understand every last delusion in our heads (especially the ones we don’t want to talk about), but that they pay attention and acknowledge what we do say and do as important and an alternative to their point of view, or accept that we may have very good internalized reasons for our behavior.
Frankly you are the least skilled to understand delusions and other experiences that you haven’t lived and are hard to articulate, so sometimes we just don’t want to open up huge cans of worms that you’ll never understand. But when we do speak or act, listen or observe carefully. I’m often shocked at how poor my mother’s memory is of events and narratives of my psychotic episodes. I often have to correct her about timelines, events and words said, and sometimes I even pull up ‘receipts’ because her memory is colored by emotional experience rather than factual recall.
One of the more inspiring applications I’ve seen of LEAP in this forum has nothing to do with talking about delusions, just talking to a closed door day after day affirming that she cared about her daughter and asking if she wanted to go for a walk or eat dinner with her or some other activity repeatedly until she said yes.
Yes. It is a little confusing on which came first as it all started about the same time. We are not sure if he was using the drugs to cope with his voices or was it the drugs which caused the schizophrenia. After reflecting on things, I believe he was probably predisposed to schizophrenia (or schizoaffective more accurately), but the drugs might have tipped him over the edge. He just completed his second time in drug treatment and I have much more hope this time because he is entering back into the community in a better support system than before. He has partial awareness of his illness and goes back and forth on treating it. This week he is on board with staying on his injection at the current dose which also gives me hope, but he can change his mind.
Our son started on the Risperidone injection every 2 weeks but quickly moved to the monthly Invega injection for the past 4 years (which is also long acting Risperidone). It is well tolerated and they don’t have to take it as often which is a big plus! It is well covered by Medicaide in our state. Something to consider.
My daughter who is now 40 has been struggling with her identity since she was diagnosed within the schizophrenia spectrum in her early 20’s. All I can say is staying on medication is very important. She went off Saphris while working in January 2020, lost her job, her apartment and was hospitalized, and it’s taken over a year to stabilize her with different medication such as Risperidone, Olanzipine, and Depakote. She now has recently been offered an office position. As a parent, I am cautiously optimistic, hopeful, but realize this disease isn’t magically going away and the job may not work out.
My daughter wants to believe she will be able to one day live without medication but experience is telling her otherwise. She’s gaining weight, and after being quite fit she now has low self esteem because of her appearance. She is also experiencing hormonal problems because of the Risperidonec and her doctor is changing her meds. I can only hope and encourage her to stay the course through it all and that she can do this job. She now knows what a somewhat stable life is now and that discontinuing her medication produces pychosis, which is terrifying to her. We’re there for her in her struggles. This cruel condition can take a toll but small steps and support is the key. Make sure to take care of yourself also. Best wishes
One of the more inspiring applications I’ve seen of LEAP in this forum has nothing to do with talking about delusions, just talking to a closed door day after day affirming that she cared about her daughter and asking if she wanted to go for a walk or eat dinner with her or some other activity repeatedly until she said yes.
That’s what my wife and I did. We did exactly that. For 30 days we asked him to go walking with us and we were always loving and affirming. But after the last hospitalization, which we had nothing to do with – a stranger called 911 because she must have feared for either him or themselves, my son just shut down. He went off his meds and paced incessantly. He would occasionally make gurgling or gagging sounds. We said he was “swallowing evil”, but would not say more. He said my wife was a replica. We never got a chance to practice LEAP because he never talked about whatever paranoid delusions he was having. I believe he suddenly left the house because he was paranoid about something, but I have no idea what.
I am a big believer in Dr Amador’s LEAP method. I use it every single time I communicate with my son, its been 8 years now. At first it was difficult for me to figure out what to say in different circumstances, with time I got better at it. Most of my communications these days are through texts, which is great as I have more time to give a proper response.
It didn’t happen overnight, its not magic, it took a long time, if I remember right it took 8 months of LEAP before I heard what he was saying and figured out how to get him to see a psychiatrist.
I used LEAP to get him to a psychiatrist for a diagnosis, when I needed him to apply for ssdi, ssi and SNAP. Without LEAP he would not have Medicare and Medicaid. He would not be able to live on his own without LEAP. He needed to hear respectful communications from me and to learn to trust me.
Is my son on meds? No. But the process of using LEAP to work with his anosognosia to get him on meds continues. I am not giving up. Wise people on this site let me know the process could take many, many years in some cases.
Before using LEAP our relationship and his life situation had tanked. He responded well to LEAP right away and our relationship got back on track. He needs my involvement in his life, he is not capable of living totally unassisted. He isn’t on anti-psychotics, but his life situation is working and thanks to LEAP, each time there is a snag, he calls me for help.