All my grandson friends took a powder also. He started hanging out with my friends. All my friends were so great to him. Gave him the confidence to go out on h8s own. He has met new friends now but it took years. Good luck
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When my son had his first psychotic break I thought I would never be able to breathe again. I spent the next few years focused on his treatment. Medication, therapy, finding things to do to enhance his mental cognition. We argued a lot because I didnāt understand his illness yet and of course he didnāt think he was ill. My husband would come home and all I could do was cry. I had lost my son and no matter what I did he was getting worse. My son got his own apartment. I went over almost everyday to take him food and make him bathe. Meanwhile, I still had a wonderful daughter at home who needed me. I tried to be there. I tried to be my old self, but she knew, because she had lost her brother as well. Several years past like that. Me running ragged, trying to keep up with any new treatments, any treatments we hadnāt tried. My daughter went off to college. She suffered from extreme depression and anxiety. My husband eventually left me, partly due to my obsession with my sonās illness and of course other things. I moved to California to be with my daughter. I realized she needed me every bit as my son. I also reassed my role in his life. He was capable of things I did for him. He just did them differently. (And sometimes oddly.) But he did them. I found the things he couldnāt do, like pay his bills, so I still do that. He lives in a different city, but is happy when I come see him every few weeks. He doesnāt live the life I wanted for him, but he says heās happy. I got to spend the last three years with my daughter. She let me move in with her after my divorce. It was wonderful because she and I had our own time together again. Donāt get me wrong, my son is still always on my mind, but now thereās room for others. My daughter passed away a few months ago, unexpectedly in her sleep. She had a heart attack, no drugs, just a fluke. I am so grateful that I let go a little and allowed myself to enjoy the other relationships in my life too. My son didnāt suffer, but I gained so much. Itās so easy to be totally overtaken by this illness, but eventually you come to realize you have to adjust to a new reality. Itās not the one you pictured when you held that baby in your arms and imagined all they would do, but itās their reality and we should do what we can to let them be happy in it.
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Lfb1170, thank you for sharing your story. Iām just short of 3 years into the grieving process and still learning how to accept my sonās illness. Heās now 22. After feeling such pain and sadness, I feel like Iām slowly getting better. Maybe thatās because heās finally on steady medication. I donāt know what will happen if he ever stops that and starts to decompensate. Iām afraid that would just crush me all over again.
I have a husband and a daughter that need me well, and I am so lucky I have them. Theyāre grieving too. We all need each other.
Iām so sorry for the tragic loss of your daughter. Peace.
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Thank you for this post. This is my first access to this forum and I couldnāt have read anything that could give me more comfort and hope. Sometimes I feel like I am alone in this adventure with my son so I am glad to have found this group.
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Iām really happy to hear your son is on his medication. I hope itās because he understands he needs them, but if not, whatever reason he takes them is fine, more power to you. Also, I donāt know what heās on, but if you ever have trouble, put him on an injectable. Itās the best thing theyāve ever come up with for schizophrenics.
Iām happy that you have your family to go through this with you. Itās much easier when you have those that love you to talk to and sometimes just cry.
I wish you and your family the very best. Keep up your strength and continue loving each other.
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I admire you for being flexible and inviting your friends. My son had so many friends growing up, but now believes if he sees any of them he will go to jail. He gets very upset with me when I suggest seeing anyone, so Iāve had to ask them not to go to see him. Iām hoping one day heāll go back on his meds and realize this isnāt rational, but until then, we hang out with my friends. [quote=āLeiann, post:42, topic:3909ā]
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Yes, Lfb, injectables are the way to go. Our son has been on Invega Sustenna monthly injectables for 15 months. Injectables were critical for our survival.
Our son does currently have insight into his illness, and he does realize medication is what keeps him afloat. He knows he struggles with paranoia, and he knows others donāt. He knows heās different.
Yes, I was just thinking the other day how the illness dominates not only the patientās life, but the spouseās as well. Horrible as I felt leaving a physically disabled man, I had to get out of his house because I wasnāt being allowed to live my life. After my firm made a round of layoffs, he obviously had designs on me being his full-time carer, and I wasnāt allowed to get a job, I wasnāt allowed to start a business, and I wasnāt allowed to go back to school. He would drive me to the benefit office to sign on every fortnight, and then prevent me from applying for any jobs in between like I was supposed to. When I told him one of the benefit advisors had suggested ācarerās allowanceā, his eyes lit up like a Christmas tree. But that wasnāt what I wanted out of life, and after one too many of his angry rages over something trivial, I went to a relativeās house and stayed there - permanently. By that stage, I was a nervous wreck.
My family had to concoct some story about me studying away from home just to stop him phoning the house all the time. I keep my mobile on silent and there are regularly dozens of missed calls, voicemails, and texts from him. I agreed to see him over Christmas and out of the 9 days I told him I was in town, he usurped 6 of them. I missed seeing my sister and brother-in-law because he managed to have a plumbing emergency just before he was supposed to drive me to my parentsā house where they were down for the day, and I couldnāt leave a disabled man repairing the pipe and cleaning up the water on his own. My mother commented he had been very selfish expecting me to spend most of the Christmas/New Year break with him instead of them.
The thing is, he perceives other peopleās boundaries as a personal rejection, hence he ignores even the most unambigously worded and firmest request to, for example, only call at certain times and limit his demands on my time. And the main topic of conversation that goes on for hours is about his fantasy world.
Does it get easier? For me, it did because I left and I now have a degree. But he remains undiagnosed and unmedicated. And of course I miss dreadfully the man I married.
Has your son always had insight? If not, what helped him gain insight? We are going on 8 months of invega. No insight.
Wow Diane, that 8 months certainly flew by. I remember whenā¦
No, my son absolutely did not always have insight. Total anosognosia from the beginning. Itās only been in the last few months that he seems to āget itā that he has issues. Heāll actually say things like, ānow I have to do a schizophrenic thingā when referring to an OCD moment, or heāll ask us to accommodate/support him when heās extra paranoid.
That being said, he still gets symptomatic (hallucinates) with ANY kind of stress, and I think he loses his insight during those moments. It all goes out the window.
Early on, we started saying out loud to him the words āschizophreniaā and āmental illnessā, and labeling the symptoms (hallucinations, paranoia, delusions, etc). I donāt know if this helped him or not, as it seems to go against recommendations of others, but I always thought that a person canāt possibly understand and learn to deal with their illness if nobody will even tell them they have one.
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Yeah 8 months of shots, 9 months since the big intervention! He will need to stay on the shot for another 10 months (probation). His doctor does talks about his āconditionā. Perhaps when Iām discussing keeping his room cleaner and tidier I can mention that the disorganization and apathy is part of his condition. Thanks for the tip!
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Omg so true! I had a this past summer with my son! He lived with me in a tiny apartment for 3 months. He showed up at my house after being homeless for almost a year. I was able to communicate with him about his experiences being homeless and how he eats, how does he he decide to sleep where? (Behind Home Depot, next to Burger King garbage, in some hedges) Although to me they sound like terrible spots, to him they make sense. I am I very grateful for that time we spent. He just developed this about 2 years ago and I spent the first year in shock and despair. I never thought I could or would be able to think of anything else other than a cure. I have heard people say that he didnāt choose this.
I have also learned that I didnāt choose it either.
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Wow!! Youāre all superheroesā¦
Good point. Although, I am afraid to bring the subject of schizophrenia up with my daughter as she is still taking her shot monthly without really knowing why. She has never asked what the shot is for.
So sorry for what you are going through. From everything Iāve read, the earlier sz is caught, the better the outcome over time. The earlier you are put on meds, the better you respond. My sonās sz was not discovered until he was 33 yrs old. It has been tough to say the least. I have good feelings for your sonās future. God bless.
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Thatās interesting. I didnāt realize your daughter is unaware of her diagnosis or why she is receiving the shot.
Though we definitely donāt belabor the topic, my son does know his diagnosis, and knows he is taking antipsychotics. He seems to not fight the diagnosis anymore, and has remained med compliant for 3 or 4 years now.
I think he is SLOOOOOOWLY starting to see his psychosis for what it is - symptom of an illness, not true things - and that makes it easier for him to address them.
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The lack of understanding of the diagnosis and what the shot is for may be slowly changing. My daughter had an interview and testing with a neuropsychologist recently, and that doctor asked her quite a few questions. I found out by listening to the interview that my daughter does not remember 3 of her 5 hospitalizations, she doesnāt properly remember why she was arrested or what she was doing that caused the arrest in Dec 2018, and she said ānoā to a question about hallucinations, and then changed it to āwell, maybe I did hallucinate sometimesā. She had more testing today and her ability to do math and spelling has deteriorated badly since her illness began, so she is aware of changes in herself.
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My son doesnt remember much about his hospitalisation either apart from when 4 big officers held my son down and tased him which was so unnecessary and heartbreaking to watch . He didnāt fight them and wasnāt at all physically aggressive he was simply psychotic and talking about demons and hitler etcā¦ when i told him what had happened he called me a liar and didnāt remember any part of it
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I am lucky that the police never roughly handled my daughter in the many times they were at my home, and I am even luckier now to have police visits become rare and stop. Iām sorry you had to watch your son be tased @Linda . That must have been awful, especially as he wasnāt violent
My son has also often denied experiencing hallucinations even tho it has been obvious to people around him that he has. I think with better symptom control he is slowly beginning to sort out what was real and what was not and recognizing what had been psychosis.
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