This gives me hope for my son; what worked for your child to deal with their sz diagnosis and get integrated back into the community +++. Thank you!
Ahhh …we all know …this disease is very sad for us as we watch our adult children with Sz My son was 25 when he was diagnosed in Jan of 2013. He is still, four years later, sitting around or walking around the house smoking, pretty much doing nothing all day! He gets a monthly injection of AP medication but this doesn’t help him with the negative symptoms nor does it improve his cognitive deficits. So as a mother, this is a brutal and enduring sadness that will never go away. The best help for us is finding support in forums like this or FB closed groups where we can share openly. Our sadness for our beloveds cannot be therapied away. In some people, antidepressants don’t really help either because this isn’t really depression. It’s sadness. Nobody can really understand why we feel so awfully sad. Only those who have children or adult children still living at home can understand and empathize. So not therapy, not medication, but empathy and knowing that we are not alone, is probably the best we will get. I’m still crying almost every day and yes curling up in a ball in bed or on the couch, been there. I used to seek empathy in all the wrong places. They did not get it and they never will! Don’t bother with a therapist unless they have a loved one diagnosed. Or if you have a sister that you are very close to and she loves her niece or nephew like her own because she’s known him since he was a curly-haired cherub, she agreed with you that he was the brightest, the most adorable little boy in the world! Even still, she will not truly know the feeling, but she can at least cry with you and for you because she loves you and she loves your son. So I feel empathy for you. I feel your pain and I get it. I suspect most of us are here for the same reason. Hugs to you and your dear son.
I spoke to one of my son’s old therapists about a year ago when he took a turn for the worst.
He’d been depressed/anxious & slightly psychotic on his meds for years - he had insight,etc. Then, it seemed to go into fullblown SZ overnight.
He had wanted to see her again to get a second opinion on what a new therapist was saying (he had developed some delusions surrounding the new therapist that he still has). So, I called her to make sure I was seeing the changes I thought I was seeing, and that he wasn’t this sick all along & somehow I missed it.
She saw the changes too, but a few minutes into the conversation turned it on me to where we were talking about my feelings instead of his, and I wasn’t comfortable with it because I felt like she was just trying to save me from the emotions I was feeling. That was really nice, but I need to feel those emotions. They help me remember to not give up & keep pushing for better help for him. After all, that’s the root cause of my own distress, and why patch up other things when you can go straight after the root cause?
A few people on my son’s current treatment team have asked me if I’m getting help for myself too - and again, that’s outside my comfort zone. I’m sure they think I’m way too involved, and that we’re co-dependent. That’s probably true, but anything less would mean I’m not fully engaged, and I can’t let that happen.
I like being here better, and I like my in-person support group when I have time to go. Everyone else has a loved one who’s in some stage of the same thing I’m going through, they care, and they have practical advice right down to sharing doctor names & explaining how meds worked in their case.
I totally agree that our feelings are important, too, because it keeps me fired up. It’s not so much that I don’t want to feel sad because feeling sad about it means how deeply we feel and crying can be a stress buster. But having sincere empathy is important for us. Before I found this forum (this was my first place) I felt SO alone, so lonely, but didn’t want to socialize. I thought I needed therapy. I scheduled an appointment and went for an intake. The young woman who did the intake was to be my therapist. Well, I sat there crying my eyes out while she just stared at me. FINALLY she handed me a box of tissues! I left there $150 poorer and sadder than ever!! Even if these therapists were trained to have empathy – how is that even possible?? It wouldn’t be genuine unless they were living it too. Sympathy is one thing, but empathy quite another. I’m sure you know that. So anyway, those are my thoughts on the subject.
Awww … I still have days where the lump and the tears will not stop! For me, the sadness is a bitter sweet reminder of the past, before Sz, when we were younger and stronger and our children were joyful and bright and so beautiful. My son is still beautiful which makes it even more unfair, in the sense that if you could go by looks alone, he could have a girlfriend, a wife, who knows? But I can see that a relationship is probably never going to be for him. People say, “oh, he’s better off. He will never know that pain.” But to me this is no comfort. This is probably really sick, but I even feel kinda sad that he would never even be a cepoted into the military! Well, I wouldn’t want him to do that anyway, I just wish or feel that if HE wanted to, it won’t happen, and I find sadness in that! I guess it’s the idea that my son isn’t good enough for anything is what I can’t stand!! My son is good and sweet and a wonderful person!
I have changed too, not as much fun and yes, also self-isolating and withdrawn, much like my son. I love him differently. I love him more than ever which I would have never dreamed possible!
May I suggest you change the goalposts for your son’s ambitions, which you may have to do on a daily basis. For example, imagine the Queen of England. What do you think her ambitions were for her children? They would have been very different to the ambitions you had for your son, different goalposts. So, when your son was young, before sz, you had ambitions for him. Post sz, those ambitions need to be reset, to change the goalposts. Set new ambitions and new goals that he can achieve, as that will reward him, and in doing so, also reward you.
Our daughter is the same age as your son I think, 29. My ambition for her at the moment is to stay in her own flat for a day, as she’s recovering from relapse. After that, the ambition, or goal, will be to stay overnight at her flat. Little goals, little achievable steps, each one achieved giving us a well needed boost of energy and spirit.
I too have learned to adjust goals for my son. Yesterday when I drove up to his house I was happy to see him sitting on the front porch enjoying the warm sunshine. That seems such a tiny thing, but a great step for him, as he isolates so much.
The scz isolates us as well, only the people who have similar worlds can understand. I am glad I had the realization that he will still my same son under all that illness. Would sound odd to people who haven’t experienced this illness through their children. For me there was a time when I couldn’t separate him from his illness. Now I can see both, can see his struggle and I admire him for trying to find a way each day to make his life work.
Yes yes yes, our sons, daughters, wives, husbands etc, all those with sz, are remarkable people, struggling with an illness that can be so debilitating. They are truly inspirational. We should indeed have the greatest admiration for them, and be very very proud of their achievements, however small.
And its such a key part of understanding isn’t it? I will know that my husband actually “gets it” when he can realize that our son’s persistence with his life is something beautiful.
Does anyone here ever get so angry that they actually say they hate their child for acting the way they do? My adult son 26 has sz and he is just awful…most recently he accidently burned down my mother in-laws back patio deck by carelessly throwing a cigarette butt out there and I mean BURN DOWN… the house woulda burnt if I hadn’t woke up at 4am and seen the patio a blaze… He constantly wants to smoke…he does drugs of any kind mostly meth though. I’ve found needles and i know damn well he doesn’t even know how to shoot up…he lies says its not him… He doesn’t shower, smells super bad, his hands and feet are filthy…meds dont work bc he does the drugs…he steals from people or just takes things without asking …but asks anyone for drugs …wanders off constantly, has no concept of time or what city he is in, repeats him self constantly, is a total pig makes messes with food wrappers spills drinks burns furniture and his clothes …he talks really loud in public or laughs all crazy … he forces burps out on purpose …he farts all the time and doesn’t care who’s around or how bad it smells or where he is …he looses his shoes almost once a week and sweatshirts or jackets…steals from the grocery store and steals weird stuff like ensure and Skittles or fruit roll ups…he still tries to spend the night at his old friends houses who are grown up with kids now like a sleepover for 12 year olds …I think he’s even having sex for drugs …I dunno…he is a total hazard to him self and since he’s an adult there’s nothing I can do. I can’t make him stay with us. We was staying with my mother inlaw but he’s no longer allowed there bc of the fire so we sleep in our suv when he stays with us or we get a motel room. He’s got us kicked out where we was staying before bc he was out at 3am breaking into the managers truck and asking random women for cigarettes and they freaked out bc he’s weird and reported him. He wastes food as in takes one bite and throws it in the trash over and over. He’s been hospitalized recently by the police bc he was a little confused in the community the nurse told me. and the emergency phsyc ward lets him out the next morning. Some times we dont hear from him for a few days…that’s when i know he’s really wacked out …he will call me from the next town over asking to be picked up but doesnt know where he is i have to call the number back its usually a grocery store and get the address…I’ve reported him missing a few times to the police bc I don’t where he is and its been a few days. He doesn’t like to acknowledge me when I talk to him unless he wants something otherwise he ignores me but will answer his dad. Speaking of his dad, he works at night and i basically try and take care of our son and our dogs. We don’t qualify for an apartment in northern California where rent is sky high and they want insane amounts in deposits and A1 credit. Our family won’t let us stay with any of them bc of our son. I try an rationalize with myself and try to keep reminding myself its the illness …our son would never ever be doing these things if he was in his right mind. He will not admit he is sick either. I go from sad to angry to worried to guilty to helpless to not giving a fuck… excuse the expression but I hope we are all adults here, I don’t have time for pettiness…I used to drink in the beginning…now I just feel hopeless and I’m trying to come to terms that this will be for the rest of my life. I can no longer do things like regular couples do. And NO ONE REALLY UNDERSTANDS unless they know someone close to them who has this illness and still unless its your own child its hard to understand…i am having trouble with it…I mean we been dealing with this close to 7 plus years now and its only gotten worse…he sees a psychiatrist only every other month maybe longer bc the county is short staffed and all the appointments are taken. I’m going to ask about that shot bc he no longer can be controlled to take his meds regularly …and this is just SOME OF THE STUFF HE DOES…I don’t remember the last time I hugged him bc he smells so foul and I’m afraid ill get lice…he’s always scratching his head and beard yeah beard the one he tries to burn off in the car with lighter and it stinks so bad… …his friends are the homeless the crazy ones like him …you know the kind that are filthy dirty and no teeth talking to people that aren’t there…the kind that sleep anywhere…yeah my son does that too …he will just lay down on the ground to sleep dont matter where …he pulls his teeth out bc they hurt and hands it to me then pulls back and asks if he should put it under his pillow so he can get money…he was serious …so does anyone else get so angry they blurt out that they hate them? Or is it just me?
I think we’ve all felt like we couldn’t take it even one more second when our family members are in crisis.
It’s hard when you feel like you never get a break & nothing is working. Due to the drug use & his current condition, my opinion is that your son would benefit from a hospital stay. Since the ER doctor let him out, can you check to see if there are any strictly mental health facilities around you? They might keep him longer.
It’s also good to know the law in your state & be able to press them about complying to the letter. My son has been kept on involuntary holds 4 times in the past 9 months and it sounds like he wasn’t as sick as your son is right now. Of course, we’re in a different state too.
I’m sorry things are so difficult right now, and hope something good happens for you soon.
My husband gets angry and blurts out stuff. Sometimes life with a family member with scz feels like hell on earth.
You are letting the lunatic run the asylum.
I feel for you. I was married to a paranoid sz for 13 years, and many of the behaviors you mention are familiar
To finish…many of your son’s behavior is familiar. And he can’t help it. But you need to set boundaries in your home.
The meth use scares me. We had an unfortunate episode with opioids which resulted in me calling the police.
I hope you can find a dual diagnosis facility and get some support.
I’m sorry that you are so worn out with it all. We’ve all been there and there is no reason to beat yourself up over your feelings. Sometimes we get so used to normalizing that others have to tell us how sick our adult children really are.
I was so angry last night watching my son slop coffee from his mug in full delusion. I just had mopped my floors. He later smash his cup gouging our table and broke the mug. The floors would have definitely been stained if I didn’t clean it up. I couldn’t even get his assistance, he was so out of it.
I get tired of the damage everywhere but tell myself it is only material. I take it a day at a time and try to treat him as kindly as I possibly can.
Our preacher said that if you do hard things on this earth out of love and endure you get special crowns in heaven. Well if that is the case, We are all going to be dazzling. Seriously, I tell myself anything I can to get through a day sometime and today I remembered that this life is temporary and some people really do have it soooo much worse. I also end every night thankful to have carried on and still to be able to work and get my mind on something else a few hours a day. I’m thankful for all of you and for being able to share heart wrenching issues with each other.
Where I am the only mental facility is the county emergency phsyc ward …they stabilize them and release them…when I was picking up my son this last time there about 2 weeks ago in the entrance was a man that they released obviously homeless smelled of urine talking on a fake cell phone told me he was a lephrecan …like he was ready to be let go…they used used to have a facility where they kept ppl on involuntary holds but I guess budget cuts closed it down …this area the resources are few …
Too bad we can’t have the government charged with a crime.
Here, if they don’t have a bed locally, they will transport you to where ever there is one if they have to do the involuntary, whether that’s across town or across the state.
When my son was in the hospital, they had people there that had been sent from 3 or 4 hours away.
And, you’d have thought they’d at least have cleaned up that poor homeless man.
If this was a private business allowing such harm, lawyers would be all over it for a class-action lawsuit.
Yes. Thank you for your reply. I do agree it will take time. I’ve really just recently realized this is kinda normal for him. N other words, it’s not that he needs to be fixed. We all just need to relax lol if I may laugh a little! So I’m getting a little better realizing he’s doing what is normal procedure (so to speak) The brain is resting? The way I understood something I read somewhere. I can feel your empathy.