My 27 year old son has been diagnosed with schizophrenia since 2013 and he is compliant with meds (a monthly shot of Invega Sustenna) which was court ordered, although at first he swore – and I do mean swore – he would not take the shot. He is pretty well except for the negative symptoms and I’m really not sure he fully understands his illness. Is there a way I could ask him maybe some questions that might enlighten me as to what he thinks about his illness or if he plans to try to get better? He just gets the shot but has no psychotherapy and says he is not depressed so not on antidepressant. I’m wondering if there is a check-list so to speak LOL to say whether he has lack of insight or not?
The negative symptoms are the hardest part for me… the brain is so numb and flat… it’s also when my ability to think and reply and concentrate was at it’s worse.
I was very much a walking dead man. I had no emotions to speak up except intense ones like rage and sorrow. I had no plans… couldn’t begin to think ahead…
Simple tasks were overwhelming…
It was hard enough to get up and go pee… much less take a shower…
clean a room???.. I couldn’t even begin to figure out how to clean a room… it took me hours to even get dressed because I would get stuck in simple tasks.
I had no plans for a long term recovery strategy… I was lucky to get to the bathroom and get dressed.
It was a med switch that got me out of the flat frozen numbness…
then through therapy and education I was able to start learning about what was happening to me. Therapy did help…
It started with anger and anxiety management. That started making me see what was going on.
Education is a powerful thing. Depersonalization for example…
I didn’t know that was a clinical thing and others suffer it too…
When I got hit with it… I honestly thought my soul was lifting and I was being chosen by the universe to receive a message… that was obviously why I was out of body…
But then someone told me about depersonalization… and it was exactly what happens to me… and others have it too… so it wasn’t just me.
Now that I know what it is and what triggers it… I can fight it.
I’d say… your son might not know what’s happening to him… just because a doc told me “son your test come back positive and you have Sz” … sure I get it… but I had no idea what that really meant.
The magical diagnosis didn’t answer any questions…
Maybe ask your son how he feels… what symptom would he like help with… that might be a good starting point. Little by little.
Good luck and I hope things go better for your family soon…
yep, it’s not going to be easy because he is actually dual diagnosed, MI/Substance Abuse (marijuana) I have seen a lot of mixed information about smoking weed when you are mentally ill and he does also have the family genetics, so pretty sure the weed maybe made the Sz come out, who knows, right? But there is no way he’ll stop smoking, I don’t think, and really, what other pleasure does he have? It’s all so confusing and hard to know what to do. All I know is “My boy is gone!” and I’m pretty much “crazy” (with grief) about it. I don’t want to get out of bed either most days. I’m going Friday for counseling (about time) Thank you for your response.
I was also thinking, I meant to say, maybe this Friday when I go for counseling for me I can ask some hard questions and get some information because I don’t think he’s getting much at all from our local mental health place, in fact, we’re in West Virginia, about the worse place you can be if you have a severe mental illness! Just figured that one out last night! Geeez! How wonderful. I don’t think he’s actually seen the psychiatrist in over a year and the girl he sees once a month is a dr’s aide and I think she just asks him a couple of cursory questions, he answers yes or no, and then he’s out the door!!! SO FRUSTRATING!
There seems to be very few places in the US that offer intuitive and empathetic treatment for any mental health issue. I am in Boston MA…a doctor and sports city. Doctors yes, mental health professionals and outreach…not!
Good luck and I hope things get better.
Giving up the pot was hard for me too… eventually there was no choice… the pot made it so my meds didn’t work right… made my symptoms worse…
Eventually I was in such a shut down state… deep negative symptoms…
There were other factors involved with getting me to stop… when I did… and the meds finally got adjusted just right… then life turned around for me.
I hope things turn around for your son too.
I understand. Ridiculous!! So frustrating!!
I went un-diagnosed and un-medicated for about 10 years from onset of positive symptoms, but I could almost all the time recognize that some of my thoughts were really delusional sounding whenever I tired to explain them to family and a few friends and acquaintances I had back then. I learned not to act on my delusions but have always entertained the belief in them to a certain extent.
I think that there is a part of us (our brains) and perhaps your sons that is unaffected by the disorder so does not recognize that it is ill, but the part of us that is out- of- order needs help from something outside of ourselves like medications and understanding from family and friends, if we are fortunate enough to make any friends anymore. I first turned to street drugs and alcohol for relief from the anxiety my new thought disorder was causing me. What a waste really, but I did learn the difference by enduring without any medications for all those years. It could have turned out tragically had I not been so centered on religious delusions and a practical belief system, as well as my personality type which is mostly introverted.
Thank you! Your answer is actually very helpful. I agree, maybe just one or two questions at a time. I hadn’t thought of your idea: What symptom would he like to change. Usually I ask him if he is depressed and he always says no. Other times I ask him if everything is okay? And he says yes. But then one day out of the blue he asked me if anyone was ever cured of schizophrenia and it just blew me away! I wasn’t sure how to answer because I didn’t want to scare him. So I said, Well, it’s not so much a cure as it is a recovery, or getting almost all better. BUT you will definitely have to stay on those meds! And also, since he is compliant and he’s not getting into trouble or anything, he’s very mellow and easy going and quiet, too quiet for my comfort, but maybe this is just all it’s going to be? I mean, I really don’t want him to think that I think he needs to have a relationship, get married, get a job, etc. As long as he’s happy, that should be enough for me, right? I’m just very confused. And I’ve been reading books and articles, watching DVDs and sitting at the computer researching and researching, looking for I don’t even know what anymore!
And then I worry, well, if he starts taking something for the negative symptoms, will it set him back? I don’t want to mess with him too much. I’m hoping that he’ll eventually come around and want to spend time with me here in the country. He loved it so much! Or go for a ride, anything.
Yeah, he smokes a lot of pot. I’ve heard both sides on this one. When he first got out of the hospital, we all fought to keep him off the weed. But eventually, it didn’t work and he smokes it every day. He’s been on the same injectable since Jan of 2013. Just that, nothing else. No therapy, no CBT, no medication for the negative symptoms. This illness is getting me so down and some days I have a clarity about it and other days I’m confused and don’t know where to start. Or should I just leave him alone? Of course, if I see some psychosis starting up, I will definitely do something. But maybe I worry too much about these negative symptoms. The only med I’m aware of for negatives is Clozaril, and that makes you gain weight. He hasn’t gained weight on this injectable.
It can be possible a full recovery for some of meds. I did it and lasted almost 5 years but smoked pot and relapsed. My dads mate had quite a few relapses and smoked pot. Eventually once deciding he needed to get better he gave up the pot and eventually got off the medication. His illness lasted over a 20 year period from begining to end.
I’d say keep an eye on the negatives too… I know everyone is really conscious of the positive symptoms… the negatives can get pretty bad too.
But if he starts shutting down too much… that’s not a good thing either…
as far as not wanting him to think he has to get a job and married and all that… It’s very cool that your not putting that pressure on… I bet there will be a time where he’s going to want to do those things.
I really don’t want to scare you… and this was just me… but I hit some deep negatives… took all pleasure out of life… I ended up motionless for days… hardly had the energy to say more then a few words a day… after a long time of that… I was just shutting down.
I’m on two meds… the Latuda for the negative symptoms and the Seroquel for the positive ones… the latuda keeps me motivated enough to keep getting through my day. Seroquel keeps the head circus quiet.
Have you looked in to Nami
They have a lot of caregiver support groups… and answers and contacts or docs that you could call. Nami helped my Mom and my sis a lot when I was at my worse.
Most universities have a serious psych department with someone on staff who could maybe give you some ideas. (if your in a state with limited mental health services)
My Mom used to talk to the people at the university here for ideas on where to begin.
I hope things get better for you soon. Good luck.
I have a question. Do you think it would be okay for my son to watch a DVD documentary, “People Say I’m Crazy,” by John Cadigan, the first person with schizophrenia to ever film his life, won all kinds of awards, very inspiring. I am not sure if I should show it to him yet. My thinking is that he will see this guy who is very high functioning, I mean he made a documentary! About himself being schizophrenic! And he’s also a gifted artist and even sells his pieces, something that at this point in his life, I can’t even fathom my son, who is 28 by the way, doing! So on the one hand it might make him think that he has to be as high achieving as John Cadigan (who was very very depressed and had a very hard time of it for many years), but he is a success story in many ways. I don’t want my boy to think he has to do stuff like that. When his sister was pregnant with twins and everybody was all excited and everything, he asked me, “So do you think I should have a baby, too?” Awwww, bless his heart. I said, “Oh, no, I don’t think so right now. Besides, your sister is having TWO babies! I’m sure some day, you will find someone and have a baby, but we don’t need to rush it.”
On the other hand, maybe the documentary will give him hope and maybe he’ll think about trying a few things. I don’t know what to do. What do you think? Or if anybody else reading this has any thoughts, please feel free.
I bet if you reassured him that it was just an interesting film to you… you might want to watch it first so you two would have something to talk about…
then if he does ask “you want me to do that?” you can reassure him… that you were hoping he might find it interesting.
I haven’t had a chance to watch it yet… I have a hard time sitting through movies.
I have watched it. It’s wonderful! Both inspiring, but also very real and gut wrenching at times. That’s a great idea. Sure, I’ll just say I thought it was really interesting . . . what you said LOL! Again, thank you. He has a hard time watching movies, too, unless it’s something that really interests him. He used to be a pretty decent skateboarder. He doesn’t skateboard anymore, but he still watches his DVDs and I think he still reads Skateboarder Magazine. If he does watch this movie, he’ll be pacing around, and then certain things will catch his interest. I would be interested to see his reaction to it. Sounds like a plan. What’s the worst that could happen? I mean, it really is a good movie! I wonder how John Cadigan is doing today? The copyright is 2004 and I believe he was about 30 at the time. I’m going to look into him. I bought the DVD off Amazon.com.
I’m sorry, I haven’t been here for quite a while. We were talking about my son and his negative symptoms. They are worse. He won’t go anywhere at all now. He admits to anxiety (which he’s had since he was a child) but denies depression, even though many times, he does look depressed, but I think (hope really) this is just part of his flat affect because it would just kill me if he’s depressed! Geez! All I want for him is some happiness, and a life with some quality. Yes, I am a member of NAMI and I read their newsletter cover to cover. I am also involved now in several FB groups (private/closed groups) where I get empathy from other mothers. It helps me. But I am very sad. I cry every day for my son. He is not willing to do any type of self-help like therapy or going to a social group at the mental health facility where he gets his monthly shot. I just don’t know what to do, if anything. I guess this is just the way it’s going to be. As they say, “it is what it is.”
Family members have their own forum now that you can visit for support.
@daquilamarguerite, I’m not sure if you’re aware that we’ve moved the Family and Caregivers forum over here:
While this is a peer support forum for people with schizophrenia and other closely related psychotic disorders, the Family forum is specifically for people like yourself, who have a loved one they are concerned about.
Also, please let your loved one know about this forum as they may find it helpful.
Best of luck,
Rhubot
Volunteer moderator