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New to the group - Son Diagnosed 1.5 years ago, Educating Myself


#1

Hello everyone. I I am new to the group and wanted to say hi. My son was diagnosed a year and a half ago. Trying to educated myself.


#2

Hello. I’m new too. My partner has been diagnosed with schizophrenia.


#3

Welcome to you both. There’s so much available to learn here on this site. We’re all pretty much in the same boat, so it’s beyond comforting to not feel so alone.

My family has been at this for about 1.5 years now (3 years if you include the prodromal). Our son is 21.


#4

My son will be 21 in June. He had a crisis last Wednesday and luckily he reached out for help right before he would have tried again to commit suicide. He is in the hospital for now and they are going to change up meds (dosage).


#5

Thank you. My brother was diagnosed many years ago, but the impact of that is very different to that of my partner. Of course they are different people and their illnesses manifest differently, but my expectations of my partner are different. Unfair expectations I think but it’s hard to get past ingrained views of what a relationship should ‘look’ like and the whole equal time and care thing. Sometimes he just fills the room. I find myself being irrationally angry, or weepy or whinging and nagging. I don’t like that person. He usually lets it go but sometimes points it out and I get very defensive because I don’t want to be that person, I don’t recognise that person and I’m terrified it’s now who I am. I feel like I’m just negative emotions and resentment.
Sorry to hit you with all that!


#6

I’m so sorry to hear of your child’s pain, but I’m so glad he’s in a safe place now. Hopefully, his med adjustment will work and you can use this time to regroup and rest your mind. Hospitalizations are sad times for us, but they can also give us a much needed break.


#7

Welcome to both of you!

My son is 35 now, his prodromal was long, he has the insidious version of scz -just keeps slowly getting worse. We believe his prodromal started at age 20, first psychosis was at 27, but we didn’t know what it was at the time. He was 31 before we finally caught on that something was really seriously wrong. It was a combination of his scz progressing slowly and our being totally clueless regarding mental illness that caused the delay.

@Sanatorium23 The more successful partner relationships dealing with scz that I have met, seem to have the same theme. The taking of meds is a non-negotiable part of the relationship.


#8

I don’t think we should ever have to apologize for our anger. I teeter between anger, sadness, and worry pretty much all the time. This illness is a horrible thief. We just have to figure out how not to let our anger consume us and affect our other relationships. This is an ongoing challenge for me.


#9

Thank you for your kind thoughts. I’m sorry that this is happening to your children. It is insidious. Meds are so hit and miss. Haven’t found anything yet that really helps him. Side effects don’t help either and he’s been on and off many different ones because of this.?


#10

Please don’t apologize. I think we all at time have that sort of feelings and most importantly, people need to vent.


#11

Hello and welcome. You can vent safely here.


#12

Yes I felt that it was a safe place. I’m not usually as open but felt comfortable to be here. I hope you all are doing well and have a good day ahead.


#13

Hello too for myself. It is a day for new guests. My step-son was diagnosed sz in March after a traumatic psychosis - he is back safely and dropped out from the overseas college now, and has settled into what was called the disorganized sz type. He is 18, his mum and I are working through the issues as best we can, like everyone else here. It is good to read we are not alone, we feel much better for it. Step-son had his first serious brush with the law on Saturday evening, he somehow got hold of cannabis (yet again), decided to take it to an open air concert. Awful. The house was turned upside down by the CIB. Enough cannabis to have him locked up for dealing. We think we have warned off his so-called drug friends. Time will tell. He has refused several times to take meds. I have read how severe the side effects can be, and I am not sure I would take the meds myself. I respect his opinion, but his conduct is not acceptable anymore. His mum is especially desperate to have her lad back to some sort of normality … she and his 26 year old sister have even discussed the merits of peppering his food with the meds (I know this is terrible, short sighted, betrays any remaining trust … but we have lost him otherwise). I know dealing with this disease takes a great deal of time, and again, thank you all for commentary. I hope for the best for all of us and I am passing on to his mum and sis what I can learn from here…


#14

Hello Dawn, I’m new here too. So sorry to hear about your son’s hospitalization. I know how hard they are. My son has been hospitalized (committed) 3 times since he developed schizophrenia at age 21. He is now 26 so we’ve been dealing with it for 5 years already. I still grieve daily for the loss of the son that was. I wonder if that gets easier with time. I hear that when you can talk about it without crying you are starting to heal, I’m not there yet. I wonder when I will get there. He lives with us and has been fairly stable over the last year though he recently started to decompensate and head toward a psychosis but I think he is coming out of that now. Through all of his sickness though we can still find some joy and I love it when I can see him smile and sometimes make a joke. Those are the days I hope for. I could write a book about all we’ve been through in the past 5 years, as I’m sure the rest of you could too. I’m glad I found this forum so I don’t feel so alone now. Hope you like it here too.


#15

Nero, It must have been very scary to have him overseas and suffering from a psychosis. My son was away at college when he had his first psychosis too, he made it through the end of his 2nd year. He had called me from college and told me he found a way to help himself sleep and feel better- marijuana. He tried self medicating with it for probably the first year of his illness, it made him SO much worse. He would be completely psychotic if he smoked. I ended up putting a tracer on his phone and stopping his drug deals, threatening anyone who sold him drugs. In the end he decided one day that he wasn’t going to do it anymore. And he hasn’t. Its been 4 years. I can relate to your peppering his food with the meds because that is the only way that I can get them in my son. Without them he degrades in about a week. He becomes psychotic, yells and screams to people who are not there, tells me and my husband we are evil and puts on horrible music and paces and paces. He wore the skin off his feet once pacing. He also held on to the porch railing and wouldn’t move for 2 days. It was summer and hot out, he was sun burning and dehydrating but he said he couldn’t let go. I called the Mental Illness Hotline and they sent someone over who said just call the ambulance when he drops. This is why I medicate his food, he wouldn’t survive otherwise. With the meds he lives a calm life. He’ll drive to the store to get some refreshments or to the mall to buy some clothes. Without the meds he yells at cashiers (thinks they’re evil too) and paces around the mall till they kick him out or he screams at someone thinking they’re a demon. He’s had two encounters with the law for yelling at people. Sorry to drone on here. I wish you luck and will say a prayer for your stepson.


#16

Hi Nero. I’m sorry you’re all going through this with your son. He sounds a lot like our son did at the beginning, except that our son is paranoid. We dealt with the druggie “friends” by contacting all of their parents. Our son was mortified, but it needed to happen. His druggie friends all dropped him, but that was going to happen anyways since our son’s paranoid delusions made him absolutely miserable to be around. Eventually, all his sports buddies dropped him too. Everyone knows he’s ill now.

Our son continued to think he could smoke pot and not be scared, but it wasn’t ever going to happen. Eventually, he learned and just stopped smoking. It was a miracle.

There’s something many doctors and researchers refer to as Duration of Untreated Psychosis (DUP). Apparently, the longer the DUP, the worse the outcome. I wish I had known about this early on because I would’ve found a way to force meds a lot earlier. Eventually I called the police on my son and a judge forced the treatment. We’ve continued to battle med non-compliance since the start, but our son is now on monthly injections, as of 3 months ago.

I know you’ve read a lot about side effects of the AP meds and some of these side effects may occur, but your child’s brain, sanity, and safety are at stake. In my opinion, do whatever you can do to get him on AP meds. I hear you when you say you “respect his opinion” about not wanting to take meds, but his illness makes him unable to make rational decisions to take care of himself. His opinion is not based on clear, rational thinking. He probably doesn’t even know he’s ill. My son doesn’t either, when he’s unmedicated.

Try to have hope that you will get your old son back. Good luck.


#17

@Anni Your son sounds just like mine during a bad episode. Yelling at us, accusing us of abusing him, calling the sheriff to report us for abusing him. The yelling is the hardest on us. When he yells its angry and violent and goes on 24 hours a day. Mine sounds exactly like someone about to lose control and attack someone.

@Nero @Anni If you are able to get yours medicated by applying it to their food, I say go for it while its possible. Mine has grown so paranoid of us he won’t even allow us to bring him things that are unopened.

The side effects of the meds are bad and my son’s argument against taking meds (he suffers from the side effect of anosognosia - which means he has no awareness that he is ill) is certainly a sound argument. He has to take 6 other meds, 3 of which can have serious side effects to support his kidney transplant. Those meds he takes, which i find a little miraculous. He does his kidney check ups twice a year, they try to get him in monthly, he refuses. If those numbers ever show his graft to be in danger from not taking his transplant immunosuppressives, we will have grounds for court ordered meds. Mine manages to keep himself out of jail, just barely at times.

If we took him to court, his argument against taking psych meds would be a strong one. We just aren’t where we can win a civil commitment yet.

For myself, the belief that it would be correct to have him on meds comes from what I know my son would have said before becoming ill. Pre-scz Jeb would have demanded we get him on meds, of that there is no doubt in my mind. Why Jeb with scz has to make it so very difficult is the burden we carry.


#18

I am thankful that my son , at this point, willingly takes his medication. He know how important it is. He, however, doesn’t tell us the truth when we ask him how he is doing on the medication. He will start to isolate him self and the attempt to end it all. He lives with his Aunt and Uncle which are really good friends of mine, she and I have known each other for over 30 years. I know he sort of blames me for his sz as I was a single mom when he grew up and money was tight and life wasn’t always easy. His Dad wasn’t much involved by his own doing and my son has had to deal with that rejection which a Jas been worse since his diagnosis. He lived with his dad for almost two years. The first year was goid then it all went down hill. As soon as he was physically able…his dad put him on a plane to come back home.at the beginning of his breakdown, he alienated himself from me saying I can bot call him my son. That killed me as we have always been very close. He tells me now that it was because I would have known something wasn’t right. Which is what I told his dad at the time. His Dad ignored me and said I was wrong. Then a day before Christmas I got a call from dad saying he was in the hospital on suicide watch. I find myself during the good times thinking, well he can still be normal and have a l8fe like everyone else and then the slightest thing sends him into depression and it all starts again. His correct diagnosis is schizoaffective disorder. Which is high depression and anxiety with delusions and voices. Recently, his dad has stoped talking to him and even ignored is sons birthday text. O so want to scream at his dad but my son doesn’t want his dad to know anything, he wants to see how long his dad will go without talking to him. I don’t think this is very helpful because I fear it will keep his depression and anxiety up.


#19

Hello all, I am new here too, posted once, but haven’t said much about my daughter. She is 42 years old and was diagnosed with paranoid scz around age 19. She has never been hospitalized, but has had voices, delusions and psychosis. She has always been compliant with her meds, for which I am so thankful. But she has had a lot of problems with the meds working and with the side effects. Recently she tried abilify and it caused a trip to the er with involuntary muscle movement in her whole body. Not the first time for that reaction, but still scary. She is engaged to a man who is also scz. The good that I see in their relationship is that they are each strong where the other is weak, and when together, they function like a whole person. He has been stable for years, with some paranoia. He is quite outgoing, which I find interesting for a schz, but it helps my daughter to get out when she is with him. On her own she only goes out about once a month for errands. She is very uncomfortable in social situations, and my husband and I have not forced the issue. Not sure if that is good or bad. One down side is that he lives in Canada, and she will move there when they marry.

I recently saw the suggestion of a book on this forum and I bought it. Cant wait to educate myself more!

The book is The Complete Family Guide to Schizophrenia. Hoping to learn more from all of you as well! I would like to hear what you think of the engaged/moving to Canada situation. I am hopeful but not sure how it will all work out. Thanks for listening to my story.


#20

Hello to you and welcome! Funny thing, I just got that book myself. I found it on Amizon. Boy, it’s tough that my son lives 35 miles away…not sure how I would react to him moving further away than that…but that could be just the mommy in me yet since he is only 20. Your daughters story gives me hope, thank you for sharing. It amazes me jyst how differently sz is from 1 person to the next. I did find put today my son gets out of the hospital tomorrow and he sounds so much better. Does your daughters future husband have family where they will live? I think it is important to have support there for them. And it does sound like they both fully are compliant with meds which is a plus.