Family and Caregiver Schizophrenia Discussion Forum

My son s illness is the main focus of my life


#61

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


#62

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 didn’t understand his illness yet and of course he didn’t 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 hadn’t 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 son’s 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 couldn’t 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 doesn’t live the life I wanted for him, but he says he’s 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. Don’t get me wrong, my son is still always on my mind, but now there’s 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 didn’t suffer, but I gained so much. It’s so easy to be totally overtaken by this illness, but eventually you come to realize you have to adjust to a new reality. It’s not the one you pictured when you held that baby in your arms and imagined all they would do, but it’s their reality and we should do what we can to let them be happy in it.


#63

Lfb1170, thank you for sharing your story. I’m just short of 3 years into the grieving process and still learning how to accept my son’s illness. He’s now 22. After feeling such pain and sadness, I feel like I’m slowly getting better. Maybe that’s because he’s finally on steady medication. I don’t know what will happen if he ever stops that and starts to decompensate. I’m 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. They’re grieving too. We all need each other.

I’m so sorry for the tragic loss of your daughter. Peace.


#64

Thank you for this post. This is my first access to this forum and I couldn’t 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.


#65

I’m really happy to hear your son is on his medication. I hope it’s because he understands he needs them, but if not, whatever reason he takes them is fine, more power to you. Also, I don’t know what he’s on, but if you ever have trouble, put him on an injectable. It’s the best thing they’ve ever come up with for schizophrenics.
I’m happy that you have your family to go through this with you. It’s 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.


#66

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 I’ve had to ask them not to go to see him. I’m hoping one day he’ll go back on his meds and realize this isn’t rational, but until then, we hang out with my friends. [quote=“Leiann, post:42, topic:3909”]
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#67

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 don’t. He knows he’s different.


#68

Yes, I was just thinking the other day how the illness dominates not only the patient’s life, but the spouse’s as well. Horrible as I felt leaving a physically disabled man, I had to get out of his house because I wasn’t 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 wasn’t allowed to get a job, I wasn’t allowed to start a business, and I wasn’t 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 “carer’s allowance”, his eyes lit up like a Christmas tree. But that wasn’t what I wanted out of life, and after one too many of his angry rages over something trivial, I went to a relative’s 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 parents’ house where they were down for the day, and I couldn’t 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 people’s 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.


#69

Has your son always had insight? If not, what helped him gain insight? We are going on 8 months of invega. No insight.


#70

Wow Diane, that 8 months certainly flew by. I remember when…

No, my son absolutely did not always have insight. Total anosognosia from the beginning. It’s only been in the last few months that he seems to “get it” that he has issues. He’ll actually say things like, “now I have to do a schizophrenic thing” when referring to an OCD moment, or he’ll ask us to accommodate/support him when he’s 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 “schizophrenia” and “mental illness”, and labeling the symptoms (hallucinations, paranoia, delusions, etc). I don’t know if this helped him or not, as it seems to go against recommendations of others, but I always thought that a person can’t possibly understand and learn to deal with their illness if nobody will even tell them they have one.


#71

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 “condition”. Perhaps when I’m discussing keeping his room cleaner and tidier I can mention that the disorganization and apathy is part of his condition. Thanks for the tip!


#72

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 didn’t choose this.
I have also learned that I didn’t choose it either.