I have had this experience occasionally with my husband as well - he’ll indicate that he is trying/planning to try something I’ve suggested or something I know he and his psychologist talked about.
It is good to know that some of the positive/helpful things do either remain or perhaps come back to his attention when he is in a better place. It helps (a little) to counter the negative feedback I get when I inadvertently say/do something that connects with his ideas of reference.
This may vary with the individual, but I tended to forget that kind of stuff when in that frame of mind or leaving it. With ideas of reference thoughts are often fluid and my mind is off to the next shiny object, or latest theory about said shiny object. I feel sometimes the emotional outbursts associated with these make them memorable for the victim/bystandard. For me it’s more about general irritation and frustration than personal attack, although I understand from dealing with my brother they can feel that way.
Modi,
I cried when I read your post because I pray for a miracle, too. I have had similar experiences as you. My son sadly will not accept his diagnosis which I understand but it is heart-breaking. We do not know what else to do but to tell him we are here for him, that he can live with us if on meds and if not, we will help him with an apartment etc. If my son goes off his meds, he can not live with us. It was hell and not good for any of us. We will provide him an apartment but he doesn’t want it. The delusional thinking comes into this and all of his decisions. I know it is hard but you need to put effort now into taking care of yourself. You should have a therapist and going weekly. You need support. We can not make them do what we want no matter how hard we try. We can be here for them and help when they are ready but as hard and painful as it is, we can not make their choices for them. You have done all you can do for him. You have done all you can do. I hope you will find the strength to now take care of yourself. I feel your pain and your love. You are not alone.
Dear Modi,
I am so sorry to hear your story. It is Everything we all deal with on a daily basis for most part. It breaks my heart that so many people are suffering with no end in sight, not to mention that the care takers are exhausted trying to take care of and do the right thing for our loved ones.
I too, have done everything I can think of, my prayer is that something changes as these people do not deserve to live like this. Did you go DMH. I do know the more times they have been hospitalized, the more they would qualify for services. I have learned we can NEVER give up and it is very inhumane. Hang in there, this forum has helped me cope for sure.
Oh I am so sorry. About 4 years ago my grandson stsrted on Clozapine. He was hospitalized after an episide where this community was trying to kill him. I had been begging for clozapine and finally they put him on it. He was better in 5 days he was kept in thd hospital for 14 days and they kept increasing his dose daily. I havd to say this saved his life. He now works fulltime and is doing great. He now only takes 350mg of Clozapine nothing else. The only side effect for him excessive drooling at night and sleepiness. I hope you find answers
That’s great! I like hearing stories like this, especially folks working full time. It does so much to lift people up who’re able to manage it. I’d never taken Clozapine, but it seems very rare that anyone speaks of agranulocytosis symptoms. I wish people didn’t have to jump through so many hoops and have to beg for it.
I would also like to see rTMS (repetitive Transcranial Magnetic Stimulation) further researched for schizophrenia. I have heard of excellent results from this when used for this purpose in other countries, but as far as I know, FDA has only approved its use for depression.
Thank you- I’ve said this so often to others, and needed a reminder to heed my own advice. I’m making an effort to do some things for myself that I enjoy, and have also scheduled an appointment for some counseling/therapy. Your post was just what I needed to hear.
This forum has helped me too, and every comment on here has been such an encouragement! Thank you for sharing your story.
I have to reiterate what GSSP said about divine intervention. It was and is integral for us. I think there may be a misperception about a person’s unwillingness to accept their illness. In many, if not most cases, I don’t think they are able to. My daughter was and continues to be immensely helped with specific supplements and much love. Omega fish oil, sensoril, lions mane, lemon balm and l theanine are a few. But I agree with others about the guardianship in your situation and I know many are praying for you.
“He literally did not know what was good for him and I definitely did.” @Catherine
“You won’t know what you might say or do that helps a loved one follow a better path, and it’s likely that your help is unintentional or misunderstood, but you do influence the people under your care and things can get better.” @Maggotbrane
I had to come to a place in my soul where it was OK for me to take action “against” my daughter’s own free will as I DID know better than she did what was good (forced medication). AND I had to just have faith in a higher power that SOMEHOW things would come together to create a change for the better (police, arrest, jail, a judge who understood mental illness, my daughter acting crazy at the right time (as sometimes she didn’t appear crazy at all), and me having the courage to ask for court ordered help). I couldn’t have planned the miracle that broke her psychosis, BUT I kept trying and waiting until it happened: when all the little pieces fitted together into a solution.
Modi, you HAVE to take care of yourself, mental illness is soul damaging for everyone (caregiver and afflicted).
I trusted that somehow the right situation would occur and I would take the right action. I believe that can happen for you too.
That’s why I feel the LEAP strategy may be successful for many people. Not only are you listening and empathizing and waiting for strategic moments to LEAP into action and agree and plan, but you take a LEAP of faith and try again and again with the hope that divine intervention or “luck” will eventually prevail. And occasionally you might have to strategically “break the rules” to get where you need to be.
Sorry to hear about your son, recovery is possible.
I’ve had a history of severe mental illness but managed to get better and no longer take any medication, work part time 2 jobs and actually enjoy my life with my girlfriend and look forward to the future. If your son would like some ideas on how to get better here’s a link to my short essay
Link: http://media.yoism.org.s3.amazonaws.com/CakeTheory.pdf
Also I have a YouTube Channel where I air my views. Good Luck>
I just wanted to thank everyone who has responded to my post. My son is still refusing to take medication, but does have a doctor appointment in two weeks, so that’s good. He’s been managing okay, and talks about how he feels more normal and back to himself than being zombied out on medications. Honestly, he has a point, and I see him more alert, outgoing, and willing to participate than when he’s medicated. On the flip side, he can be unpredictable, and I feel like I’m just waiting for “the bomb to drop”, so that stinks. And when he’s taking medication, it makes me more comfortable.
He actually participated in all of the family functions over Christmas, and it was so nice having him with everyone. And everyone enjoyed having him around too, which was great. There wasn’t any drama until Christmas day, when everyone except he and I had left for a few hours. He wasn’t “happy” with his gift from me and wanted to exchange it for something else that is ridiculously expensive, and I pretty much lost it- does anyone else ever just reach a point where they’ve had enough, and lose it? Anyhow, I went in to another room after saying a lot of things that I shouldn’t have, and calmed down- then came back in to apologize and tried to explain how I was hurt, etc. but the damage was already done. He was snappy, calling me names, etc. for the rest of the day, until we were alone again that evening. He started in again on me, and I told him once again how sorry I was for the things I said, and my eyes started to tear up, which I think must have shocked him, because then he started listening to what I had to say. Things were 100% better after that. Today he’s kind of manic, and keeps calling me at work, wanting me to buy him a car (I’ve told him that he’s not allowed to drive if he’s not taking his meds), and is currently in the fridge grabbing and opening a bottle of wine someone gave me for Christmas, and drinking it. He rarely drinks (counting my blessings on that one) and he also quit smoking a few years ago, which is super great.
In all of this, I have a lot to be thankful for. And I’ve been making a point to do something at least once a week for myself without him around- whether it’s getting together with a friend, walking through stores and looking around, or just going for a long walk or a drive. That’s helping too, so thank you for reminding me to take care of myself.
The one thing I haven’t done that I’ve heard is necessary, is I haven’t “mourned” the loss of the son I once knew- I just can’t bring myself to do that, mainly because I still see him in there more often than not. I guess I feel like once I do that, he’s gone, and I’ve given up hope, which goes against everything that I spiritually believe, and have been holding on to.
I wish each of you a very Happy New Year, and I hope this coming year brings answers and some joy to each of us-
YES on the sometimes just LOSE IT.
Yes, this is the sad part.
My husband really was looking and feeling the best for the first two months after he completed a LOOONG and slow medication taper - although he never complained of feeling sedated, I do think the medication had a mildly sedating effect that kept him from feeling his best.
And now, of course, the return of his symptoms is having a hugely negative impact on his quality of life.
So, fingers crossed for return to medications later this month (his family is finally getting the severity of his impairment, so they’ll be able to help encourage him to try it again), but I do think it is all balance of greatly less-than-ideal options.
There is a new antipsychotic with a novel mechanism of action approved by the FDA and scheduled for release in this coming year. I’m going to try to start a new thread with a link under the assumption that others will be interested.