Hi, I’m new to this forum, my son is soon to be 27 and was diagnosed with schizophrenia last fall, before that he was also diagnosed with bipolar. He is living in supervised housing in another state. Because of very poor communication, I just found out yesterday from my mother that he was diagnosed with sz. This has hit me hard. It’s all ready been hard watching my beautiful, intelligent, caring son suffer so. I just try to get through day by day. My husband says he is alive. He has somewhere safe to live. He is taking his meds, he can’t smoke pot where he is … I would say I’m happy to have found this forum but I am not happy that other parents are suffering as we are. I think of him as a little boy and it just breaks and breaks my heart.
IWelcome to the forum… it was hard when I heard my daughter’s doctor say that my beautiful talented and caring daughter could have a mental illness…at the time the doctor suggested three possibilities… Schizotypal personality disorder, schizophrenia, or bipolar disorder. It took a long time to find a psychiatrist who didn’t have a waiting list or was willing to take on a teenager…that was hard because she was suffering, but unable to get her any help beyond therapy. it finally took a crisis situation that put her in the hospital for her to get the help she needed… It was a very hard week for the entire family. … now on meds, we are just now starting to see the daughter we used to know… she had been suffering silently for three years without telling anyone that she had been suffering before then until this past summer she finally opened up to us what she had been dealing with… it felt like I lost the daughter I used to know. The current diagnosis is Schizotypal, because the symptoms were not severe enough to be schizophrenia.
I’m sorry that you are going through this while being far away from your son, in another state.
I’m sorry that you and your daughter are going through this. We had a terrifying 3 days where my son disappeared in Buffalo, Ny. We could not communicate with him because he thought his phone and email were being monitored. It was terrifying. I would be up all night talking to people, searching for him and then get up in the morning, go to work and act like everything was ok. Thank God someone finally saw him walking down the street. People were seeing him all over the place. Anyhow, not sure why I’m bringing this up. Thank you for your kind words.
Wow, I cannot imagine how terrifying that must have bred not knowing where your son was! And yes, thank God someone found him. The feeling of acting like everything is okay, when it’s not is something I am familiar with… I have developed a few close friends that I have been open up to about what we are going through… someone at work… another person from my church, and an old college buddy who has schizoaffective bipolar who is doing fine right now.
Welcome Writersmom, but I’m sorry for the tragic circumstances, pain, and sadness that bring you here. My son is 22. He became ill during his freshman year of college. My heart aches every single day.
I am sad every time I hear about or read another person’s story. All I can say is that in most cases there IS hope. I want to give people hope! The best thing you can do is to get educated and don’t presume (like I did initially) that I had a good understanding of this and that I just had to wait it out to see what would happen…that there was nothing I could do. To some extent, the latter can be true at any one point in time, but I encourage you to read, learn, find a support group NAMI), talk with your loved one’s doctor, etc. You will be better prepared to deal with the next step in this journey. And you will learn how to cope yourself. When you have a specific question, aside from talking with your loved one’s doctor, do the research, look on this site to see if the question has already been addressed, and start a new post if necessary.
It is OK to communicate here, it is a way to find support in the heartbreak world we live in loving someone with sz.
Welcome @Writersmom31,
We are all here together with similar situations. I hope you can find comfort here. The site has saved me from some very dark times. Hope to hear more from you.
AnnieNorCal
Yes!! BE INVOLVED…BE PROACTIVE…BE THERE…10 years post diagnosis for my son and it’s been a long road. He is stable on Invega Trinza injections every 3 months, sees his psych doc and has his own apartment, but I wish I could get him more involved in anything to do during the day…its hard.
Does your son have insight to his illness. My son is taking invega sustenna once a month but says he can’t live with the sidefects he says he has no joy for life and rather be dead then live like this. He blaming me for this because we put him in the hospital. He will be coming out April 25 on a cto. I don’t know what will happen then.
I just saw an article “14 Ways to Deal with Caregiver Stress” on a unrelated site CaringBridge.org. However, I thought the article had some great ideas that relate to our roles as family members in regard to both stress and sadness. I suggest taking a look. It’s a great site for sharing information about a loved one’s journey with a major illness (such as cancer) or following a serious accident.
That was a good article… as well as the other article about 10 tips for the caregiver… remember to take one day and a time and celebrate the good moments…are the ones that stand out for me.
I’m so sorry for your pain. My son was first diagnosed with ADHD, ODD, Bi-polar, Schizo-affective and now Schizophrenia. All this since he was nine - he is now 39. He has been Baker-Acted more than 30 times and through each step I was forced to learn more and more about the treatments, the meds and diagnosis itself. After 18, he has been in a mental institution twice, each time for a year(+/-). I sit on the board of one of the family groups at the state hospital - even tho he’s home with me again. I’ve watched my son slip away slowly but I still continue hoping that we’ll find the right meds at some point and things will level off. You never realize just how strong you are until you have to advocate for your child. You have to have hope and keep the faith. Join groups and be willing to talk to others because that’s the only way many people will understand those with mental illnesses and disorders. NAMI may have a Peer-to-Peer group in your city that allows people to share the experiences of their loved ones so you don’t feel alone. You still have a life - volunteer, if only for a couple of hours or a couple of days a week - unless you have to work but either way, take care of yourself. Write your congressmen or give your support to groups that foster support for those with mental disorders. I’ve learned not to take his outbursts or lack of concern personally and I hope you know that underneath all the crud that comes with schizophrenia, your kid is still there. I hope things settle down for you and know that you truly not in it by yourself. Take care and keep your spirits up!
One thing i have to say is how much of it is manageable
Its not real or we would all have severe ptsd
And schizophrenics don’t
Paranoid hell is a waking nightmare but even the worst of that can for long term sometimes only be a few hours a day
If it is an episode including some mania that is sometimes just acute spirituality which is also scary as hell but never want to come down from this stuff in a way
And they will never hate you for hospitalizing us
It is so different its just how it goes when sudden realisation that , well its not coping
My brother has a diagnosis of PTSD depression anxiety disorder and unstable personality disorder
He has not been honest about his 5yrs psychosis and alcohol consumption
And i suspect psychotic bipolar with depression primary
I’m glad this was helpful!
Sometimes he does…like I said he gets the Invega Trinza…it seems to work well for him. My son is very funny and he jokes about it all the time, I could tell you some way out there stories… one good thing is he has not been hospitalized in almost 5 years since Invega Trinza. I think he wants to move I with either his Dad or me, I hope it comes to pass…but for now he had an apartment
This is exactly where I am at with my son at this point… doing this alone is very hard. I always have to step back at some point and recharge.
I cry frequently for the loss of a future for my son. I cry frequently for the sadness I feel. I cry frequently for my daughter’s loss of a brother, my ex-wife’s loss of a son. I try to be hopeful, but it seems hopeless. My son seems to be getting worse with age - he’s 29 and will be 30 in a couple months. It’s sza/bipolar type, so it’s pretty bad as he’s always delusional and when the mania strikes (frequently), it gets downright scary at times. I feel sadness for all of us that have to deal with our loved ones suffering so, because they are suffering even if they aren’t that aware of their disorder. My son seems to be mostly unaware of his issues. I have a hard time with it all because I’m a fairly logical person. My son does not respond to logic or reasoned thinking. I guess I’m having trouble adjusting to dealing with him though I have made progress. So, OP, I understand and would say go ahead and cry. I do.
My son is very close to the age of yours. I feel the same grief for the loss of a fulfilling life for my son, as well as for the loss everyone around him experiences.
My son has stayed on his medication for 3 years (clozapine) and is now at least able to live a life that is not so tumultuous, but he still experiences delusions and paranoia which I know causes him such discomfort and fear. To live with that daily has to be horrific. The inability to really apply logic to his beliefs is beyond frustrating.
I guess I’ve adjusted to what this life is, but I don’t know that I will ever fully accept it - I know “life is not fair” but this is downright torment for our loved ones. Tears are sometimes our only relief.
Is your son on medication? This illness is not logical. I have to keep reminding myself of that.