Seeking advice from parents with a child diagnosed with Schizophrenia

I certainly understand your roller coaster ride. I surely will pray for you and your son too. My heart goes out to you. My family did not understand what was going on either many years ago at the onset, and I was ostersized from the family. It took years for them to accept that we have mental illness in the family. Meantime I was doing everything possible to study the condition, change doctors, get new opinions, rush to the school when he had a psychotic episode, or meds didn't work. They tried so many different ones on my son. That's why they call it "the practice of medicine". They practice on him until they get the right. It was a terrible roller coaster as you say. All the medications have side affects. Olanzepine makes him tired and gain weight, when he was always a tall lean person. I heard that Abilify doesn't do that. We may end up changing again! When does it end. My son is the sweetest man and I hate seeing him go thru this. I'm too stubborn to go for therapy for myself. He lives like a monk. Doesn't care to talk much or at all.i am a widow and fear for when I pass and he is left alone with no family. I had to get social services involved so someone will monitor him when I'm gone, but no one is as dedicated as a good mother. We have to keep our heads above water and pray for them. We are so alone here. My son is a sweet, quiet loner, no phone or computer, no interests any more. When he was younger he was an archer, marshall artist, fisherman, jogger, laborer, active until six years ago when he gave up and just stays in his room. We are older. He is 52 and I'm 76. I am a musician, so I soothe our souls with my music he enjoys hearing. My son worked for many years while on heavy meds. I'm sorry to go on and on. Just stay healthy, it's good you're seeing someone for your own mental health. All we can do is accept the situation and cry alone at night. It can be overwhelming. Be wishful and hopeful and keep life going the best you can. I hug you.

@pta thank you for your good thoughts. Does your son do therapy? I think it helps. If he can get on Medicaid it’s covered as are the meds (yes, it’s harder for people that need it under this new hardcore admin that has cut back everything here to fight unwanted wars). Sorry I digress. We have tried to get him interested in things, hobbies, church, library, volunteering, sports, but nothing did. We finally got him a cheap membership to Planet Fitness, he was athletic and slim but gained weight with the meds, and that has really helped. Plus at least it gets him out of his apt a few times a week. He has his own apt nearby now, which helps his independence. I worry about him not having any friends, like he did before in school and when he was working, but he has discovered some online friends thru gaming and they all play station every day. Most of the day I’m afraid, but it’s better than nothing! Never had any support from extended family ( they always ignored us, when we lived in the same small Oklahoma town with them, and for no good reason last year his eldest brother secretly created a trust that cut my husband out of his parents inheritance, as he has POA). We found it by accident looking at online county records. Some nonsense excuse that he moved away and didn’t send money home regularly to support the other deadbeat brothers and families who lived in all the family rent houses with their families for free, as did the eldest brother) Bizarre. Yes I have issues over the whole thing and am bitter. We feel like we are on our own here too. Please share all you want, I think it helps to discuss with others in similar situation as we keep all this to ourselves as a shameful, dirty secret. And it shouldn’t be. But who could comprehend all this? One time one of my husband’s brothers commented that our son was just drinking or getting high too much. Ignorance. It’s hard for me not to blame them for everything.
Our son he does keep in close contact with us and both his siblings who live out of town, and we watch him closely. That and the video games is about it. Sorry, back to you: I will pray for your son that he does not completely give up and can keep looking for something that can bring him some joy. Music is great, maybe even some beginner lessons would be good for him. I know it takes self motivation though, I get it. Hugs your way….

@bewildered hi, I appreciate your words. My son refuses therapy. He doesn't like to talk, especially small talk. He talks when he feel it's necessary. Opposite of me! I respect his quietness. Yes, he is on Medicaid. He is like a monk. Doesn't want or need too much mental stimulation. It's too much for him. I believe he also has some autism. Never diagnosed. He was always a Special Ed student. We never know how the special Ed students will turn out as adults. Never know what surprises in life are around the corner! We live a quiet life here in the woods on a mountain. Sometimes I don't feel like talking either. Extended family can be cruel, yes, as you say, ignorance. But we maintain the best we can. "We ain't gettin' any younger.". I just accept and hang in there. Thanks for sharing. I wish you all well. From one mother to another, keep the faith! Hugs to you.

@bewildered Wow definitely not easy what you going through, my family takes it lately too, some believe that medication covers all the symptoms but no. She does has episodes and sometimes it is worse than other. She doesn't live with me at the moment but keeping in touch with her. My ex (her father) didn't help at all either so it was me dealing with everything. My daughter like to be by herself, self aware of her situation except the episodes. Worried about the medication side effects but it helps her. Sorry you going through the same. Have a wonderful day

My daughter has Bachler degree but sadly there is not much she can use it for the same reason. Hope for the best and the only thing we can do is being there for them. Luckily my daughter still drives but not sure for how long. And my family is not very understanding because they don't deal with it. One says ohh take the meds and you are good for life. But it is not really true. Still has episodes.

@andreaharrell I will pray for your daughter. That is great that she drives and is able to work. There are more meds now than there used to be, hopefully will have fewer side effects. Thanks for reaching out and stay in touch. One day at a time….

@bemwildered my son got off the lithium after being on it for over 30 years. He has stage 3 kidney failure. There are 5 stages so this is not bad. Low salt diet. He still functions well. They took him off risperdal and he's better too! He takes Olanzepine the generic of (Zyprexa). It costs less and same results. He is sooooo much better now. And he takes Lisinopril now to protect his kidneys from further damage. We changed doctors of course. The last one was a psych nurse practitioner who did not check his kidneys, only did the lithium level labs and mismanaged them. It's good to change doctors once in a while because one may be more experienced than another, and give you better info., research on line, etc. no dialysis at stage 3. I know a person who takes Abilify alone and does very well. He is a social worker!

This post goes out to all of you listed here. Mental illness is lifelong for the person suffering from it, and for the caregivers, us parents, spouses, etc who care. It becomes a way of life, always trying to help find better care, better medications, better help. For many there is a light after the storm (i.e. it could be our dentist, doctor, teacher, professor, nurse, grocery store produce guy) who take the right medications for their mental illness. We don't know because there's works for them. Then there are people like us always trying to find the right fit for ourselves or a loved one. It becomes a roller coaster ride and we become conditioned to the condition, it becomes our way of life. We never give up! So just keep plugging away. When everything seems good for a long time, not that time, because whamo! We get an unexpected surprise sometimes that something is off. And we start all over again. We just want ourself and our loved ones to feel "normal". Whatever that is. So all I suggest is eat right, keep our weight down, exercise, sleep well when possible and carry on. There's no miracle. My love goes out to all of you.

I made some grammatical mistakes, but you get it I'm sure. Thank you for listening to this old lady.

@pta I only paid attention to what you wrote. Many times I'm writing fast and forget to correct my grammar 🙂