Me too. I’m crying my eyes out right now. I do this a few times a day. My son is 28. Today is his birthday. He lives with his dad and sister. I live with my fiancé. Somehow, when I go visit him, I manage to keep my emotions in check, I don’t cry in front of him, but there have been a few occasions I’ve had to step into the next room and cry for five minutes. It’s awful! I don’t want him to see me cry. It’s been three years since he was diagnosed, and I’m still sad sad sad blue blue blue . . . I wish my mother was still alive. She would know how I feel. Nobody else seems to really get it. I’ve never ever felt this kind of anguish! The other day, he asked me if anybody was ever cured. I thought he understood this! I had to tell him that no, it’s not curable, but don’t worry. . . you are on your medication and right now you are fine, but always take your meds. I didn’t really know how to answer. I felt so bad for him.
A mother knows their son better than any doctor. What I’ve learned is that doctors are not God and they can and do make mistakes. Luckily with mental illness you usually don’t die from a doctor mistake and then they try to cover it up.
You need a different doc. If one is saying, “I don’t know”. That is a clue they are clueless. Get a second opinion now.
Hang in there it can get better. There are many different meds and it just takes time to find the right one.
There I go replying to a year old post. I like the new closed thread feature. Now I just worry about this Mom and her Son.
Hang in there and don’t be afraid to get some help for yourself. I got really depressed after my sons diagnosis so I got on some anti depressants. The people on this form help me a lot. Get into the Nami family to family. And do your best not to let this take over your life. My son was diagnosed in 07. He did bad, and then very well for a while. He was able to work have his own place and have friends etc, There is hope. Take care.
Sorry, I haven’t been on here for a while but things are worse than before, his doctor has him on 300mg. of clozaril which make his movement disorder worsen. He is in the hospital for a few days and I found out he’s on the 300mg. this is awful for him, I don’t know if I should let them know he can’t tolerate such a high dose? Or just leave him like that, he is also under a lot of pain meds so some of the side effects are being masked
There is help for reslesness. Ask for it. I was shaking so hard I could not eat with a spoon in the beginning when pdoc put me on meds.
How long has your son been ill or when was he diagnosed? My son has been diagnosed paranoiod Sz since Jan. 2013 and I’m still the saddest person I know. . . I hide my grief. But I am despairing and sad, lonely, fearful . . . it’s hard to go through every day with a lump in your chest and tears welling and sometimes I even cry in public. I went for an in-take at the local mental health clinic here – my fiancé and sister have been urging me to do something for myself, for this overwhelming depression – so I went this past Friday. I go for my first therapy/counseling in two weeks. I guess I’ll be seeing a psychiatrist then, too. This will be my first experience with a psychiatrist and counseling, but I guess it’s the only way to control the grief?? Have you tried anything like this?
I go to counseling and I tried three different types of medication, but experienced two severe side effects and one just debilitating side effect am waiting a little while before I try something else.
I have had major depression plus some other diagnoses since I was very young. Stress makes these less manageable.
Some counselors and psychiatrists are great; some are okay; a handful are bad. If you do not like the people after two or three visits, try other practitioners until you find a good match.
My counselor has knowledge and experience with serious mental illness plus compassion and appreciation for different people. Many good counselors do not have an understanding of serious mental illness as the main population who receives counseling is known as “the worried well.”
I have met the psychiatrist there because of my son. I know she is very compassionate and knowledgeable about schizophrenia; her own son is also schizophrenic. I spoke to her long enough to ask, “Is my son really sz?” She handed me the box of tissues and said, "Ohhhh. . . .yes . . . " That was almost three years ago and I think of that every day. He’s much better than he was at that time, but I am not. I hope I can feel better with some therapy.
I am hopelessly sad over my son’s illness, which no one but a parent of a mentally ill child can understand, so this site has been helpful, knowing there are others out there feeling sad, alone and isolated. My son was diagnosed during an involuntary commitment. I had been suspecting the possibility of mental illness because it runs in my family on my mother’s side (Now know it’s on my ex husband’s side too) but at the time I didn’t know much about schizophrenia other than the stories I heard about my cousin and sadly media (stigma). I had not been studying and reading or doing anything about it. I was ignorant. Also, my son was drinking heavily at the time and smoking a lot of pot, so I thought this might be the reason for his erratic and out of character behavior. He was 25 when he was hospitalized for one month in the state mental hospital and I will never forget the phone conversation with the psychiatrist there who just said, “Paranoid schizophrenia,” in a cold manner as if I shouldn’t be surprised, shocked, cut to the core . . . I know I don’t have to explain here . . .his birthday was a few days ago. He is now 28 years old and living with his father and sister and twin niece and nephew who are two. I live with my fiance in the same town, but out in the country. This is the same living situation as when he was diagnosed. So I don’t live with him but my daughter is there and she assures me all is fine and of course I see him as often as I can. He is on a monthly injection of Invega Sustena which has helped him as far as the psychotic features go. He’s not hearing things, saying really strange things, his hygiene is okay, before he wouldn’t bathe or brush teeth and smelled awful! But his negative symptoms are bad and so you see, all is not fine, not to me. I am so sad because I watch him and I see no interest whatsoever except to sit around or actually pace around the house, sometimes walking outside to stare for a while. He loves when I visit and smiles a lot. He doesn’t talk a lot. I try to figure out if he’s depressed, but he just says he is not. So I have been reading and studying about this terrible illness and I have become even more depressed, sad, crying a lot, nobody to talk to because nobody understands. They might have sympathy but they don’t have empathy, and the conversation is always changed quickly or the person says things like well at least he’s not in jail or in the hospital, things like that which makes me know they aren’t getting it. When I talk (cry) to my fiance, at first he would be so frustrated and say oh god not again or I can’t take this . . . so for awhile I’ve been suffering alone. Then one day, my fiance came into the bedroom where I was laying and crying and said he wanted me to seek professional help. My sister has been saying this for a couple years. So I have been for an in-take and have my first counseling session in about a week.
So, onesadmother, believe me, I DO know how you feel. I am about to start reading “Behind the Wall,” stories told by parents of children who are mentally ill. I know it will make me cry, but I’m hoping that even through the tears I will be able to feel a little better knowing there are those out there just like me, I’m not just a cry baby . . .I am justified in feeling this way and I shouldn’t be hiding in the bathroom crying and I shouldn’t be ignoring phone calls and invitations of friends for fear I’ll cry and then seeing the looks on their faces and the awkward attempt at consolation or a very awkward hug, so I’ve stopped talking about it and I just stay home as much as possible.
I hope you can get some relief, too. I know your heart is broken.
So sorry those are the exact feelings I experience my son is on clozaril the doctors swear it’s good for him but as a mother I know it’s causing his movement disorder to worsen. My family isn’t empathetic they just say oh! I’m sorry just pray for strength and take care of you. They don’t come visit nor does my husband’s family everyone just abandoned me… I understand your pain, only a mother can feel and hurt for their loved one I cry all the time
And as far as family, my ex husband’s family have never said one word to me about it. They live 600 miles away, but they have never called me. I don’t know what they say to my ex when he goes to see his family. They do have a group on FB and I posted one thing on there a few weeks ago indicating how I was feeling and hoping for some kind words at least. ONE of his siblings (my son’s uncle) sent me some sort of breathing exercises, like a yoga type thing, that I could try. And another woman, whom I didn’t even know, but she was invited to their family FB page, asked if I was okay and if there was anything she could do to help. I sent her private message and explained and she was so very sweet and nice! But I don’t understand the rest of the family saying nothing at all! I was always close to this family, even though we are divorced. I guess it’s just more than they can comprehend. Honestly, I think my ex’s mother who is the family matriarch, doesn’t even believe in mental illness! She probably thinks it’s my fault he’s the way he is! Wow! So frustrating! And heartbreaking! I so wish my own mother was still living, because even though she wouldn’t have the answers, at least I know she would hold me and cry with me!
Lots of people do not understand.
I am trying to drop my anger towards the hurtful, blaming family members who are making a serious illness and difficult situation much worse. I want to drop the anger because it’s hurting me, not because I’m interested in them anymore.
I hope you find comfort; there are also lots of people who do understand.
I am slowly starting to find some comfort. But it’s not enough, which is why I thought I would try some counseling, to deal with my grief. I’m not in denial, I do believe he is schizophrenic, and he is safe for now as long as he gets that monthly injection. But I just feel very lonely, sad and even fearful! The anxiety is so bad. He says he is not depressed, but I don’t know whether I believe him. And as far as my ex family (I guess that’s what they really are since they don’t seem to care and we always loved each other) I’m not so much angry – well, yeah, I am a bit angry, but I’m really more hurt than anything. And while his positive symptoms are definitely under control, his negative symptoms are bad and he just refuses to go anywhere. So I’ve been talking to him about going for a walk with me (and my dog) at the park. It’s a nice day here in the 60s and sunny and soon it will be bitterly cold and lots of snow and I won’t be able to get out of here to see him, since we live way up a steep country road and we’re the last ones to get treated or plowed out. Ugh! Not looking forward to this winter at all! Is it me? Am I making too much of this? Should I just let him be for now? Maybe he’ll come around? He lives with his dad. My fiancé doesn’t love it if I go over there too much because he thinks it’s weird that I would hang out with my ex and we’ve had many fights about this! My son won’t come to see me. He won’t even leave the property he lives on! He doesn’t like riding in the car, etc etc etc.
Please look into www.nami.org
They are nation wide… non-profit…
They offered support and counseling to my Mom and my sis when I was at my worse.
Caregiver burn out is a very real and serious thing. take care of yourself too.
Thank you. I have looked at NAMI and our local mental health facility here, which I don’t think is very good, just kept saying NAMI, NAMI, NAMI! So I am a member and I donate something every year but I haven’t really delved deeply into it. I’m going to start going to their site more and look for some help. Thank you so much!
I think you need to talk seriously with the doctor about it. There are a lot of alternatives with med’s. If one is hard to tolerate another might not be. You want your son to be as high functioning as he can, and there might be other med’s that can do this for him.
He’ s no longer on Clozaril and he’s hearing voices and they don’t stop. He’s on zyprexa I am starting to feel overwhelmed and feel like he needs hospitalization. He’s not stable I’ve messaged his doctor and she put him on Neurotin. He was behaving like a mad man. He didn’t do well on it. I am concerned for him.
Neurontin in addition to Zyprexa, right?
Neurontin is a fairly mild mood stabilizer with a very short half-life. It helps, but I don’t know if it would be enough on its own.
My son has taken it on & off for years, mostly because it’s one of the only drugs he’ll actually ask for & they believe it helps him sleep at night.
Yes. Neurotin is 100mg 3x a day
My son is prescribed 300 mg/day to be taken all at once at night, mostly for sleep, but hopefully as a mood stabilizer too.
My husband was prescribed the same drug for nerve pain, it’s also used to control seizures. He started off at 300 mg/3 X a day and they moved him up to 600 mg/3 X a day - they may have moved him up one more time before he kind of gave up on it.
As far as I know, Neurontin doesn’t have any anti-psychotic properties, that’s why I was wondering if he was taking anything else.
Maybe the Clozaril has to clear his system before they can try a new AP?