but how can someone ’ learn to become their own advocate ’ if they are not able to learn or focus or remember anything to begin with because of the meds ?
My son was diagnosed 2 years ago now and is now 23 he just got his own apartment and only has to pay 30% of his income (ssdi) he is excited and i am excited and happy for him hes our oldest child .
I want him to to be as independent and as happy as he can possibly be in this life and i feel that more than ever before right now he needs me he needs help taking his meds or he will forget he just cannot concentrate or focus at all on anything i come over and clean organize and do his dishes hes very very forgetful and seems spaced out but i know he enjoys having his own space so i want to help him keep that but also important is a social life and relationships with people , and attaining that is difficult in his present state so there needs to be a change but noone seems to care about these things it seems except me and his father …
he was living in a temporary type group home after he was hospitalized there is a 6 month limit to staying there however he was there on 2 separate occasions after he was first hospitalized after hearing voices and then while there he got ahold of some over the counter meds and took them all trying to kill himself .
went back to inpatient for about 2 weeks and discharged back to this place for another 6 month stay and like i said now he is in his first apartment hes excited for the future but he is still very spaced out still very forgetful and needs a lot of attention and redirection which im ok with if this is apart of his illness i will take care of him and just try to make his life the best and the most fulfilling and do what i can to help him be as happy as possible .
BUT im very frustrated with the doctor hes too buisy he doesnt really care enough or pay enough attention to how my son is acting he has a lot of patients his caseworker says that he " just needs to learn to become his own advocate " but if someone is over medicated and does not have the ability to concentrate on anything how can they become their own advocate or communicate that to a doctor even if that doctor did have an interest in working on adjusting his meds ?!
physically he is an adult and in theory adults are expected to be able to make their own decisions regarding their care but what if for some reason that is not the case what if mentally an adult is just not capable of doing that for some reason and is not able to advocate for themselves because they are being grossly over medicated and their doctor is being negligent in their care what do you do then???
is it possible to switch doctors when you are on medicaid just for thinking the care you are getting is wrong if so how can we do that ? has anyone had a similar experience as this ? I felt so helpless when he was trapped in their “care” the last 2 years they only seem to care about making him compliant with taking the meds that are obviously not working and as long as he is able to talk and walk everything is A OK next patient …
I am not an expert on medication but we do manage his meds now and i truely feel like he is over medicated that would be great if a caring doctor could pay attention and care about him and see him as more than just a number but being on medicaid im not sure we can change doctors .
I have been thinking lately about starting to reduce his meds myself just a tiny bit each of them except his antidepressant to see how he reacts to that has anyone here had experience doing this concerned about their child being over medicated and adjusting medication for their child themselves ?
Every person is different - and while the concept of being your own advocate is good in concept - obviously people will be able to move towards that goal to very different degrees based on their current situation. So - I view that more as a goal than the reality in any given time period.
I can definitely see where it would be frustrating if people “expect” this level of functioning from all people all the time - heck, my parents need ongoing support in terms of advocacy and I suspect that everyone needs support from an external advocate just because its hard to see the bigger picture when you are ill long term…
Here are some resources to help you and your son get the best treatment possible:
and
and a 2-way checklist for every doctor’s appointment to make sure that they are addressing what is important for your son:
Why do you think he’s overmedicated? How has the dosage of his medication changed over time?
The doctors are frequently trying to find a balance - minimize the dose of medication so as to minimize side effects, but not so much that it increases the risk of relapse (which can have a long term negative impact on the brain) - so its hard. Of course, that shouldn’t be an excuse for ignoring medication dose changes over time and testing different levels of medication… Sometimes doctors just do what is easy for them - and not try to optimize the outcome of the person. I think family members need to be the advocate in these situations…
thank you for your reply i really appreciate it thank you for the links and info i will definately share the info with my husband . we just want the very best life possible for our son i really dont have any expectations for his future other that his simple basic happiness im not concerned about anything more than that honestly .
I believe he is over medicated because his attention span and focus and memory is just non existant and he always seems spaced out my husband used to be a CNA at a psych hospital and says its not right that he is acting this way . The only tiny medication adjustment that has happened within the last 2 years is that in the hospital he was started on some shot and he was taken off of that after my husband insisted on seeing the doctor without an appointment and complaining about the state he was in the doctor only then , not on his own out of concern , stopped the shot .
I think he figured it would just be easier to change the medication than have to deal with this annoying parent barging into his office without an appointment nagging him . To be fair i dont know how well he communicates to the doctor when hes alone with him during appointments but i wish the doctor would be more attentive . Maybe thats what we need to start doing to make them take notice and adjust the meds ? If they dont care about him they might at least care about their own time and inconvenience and that could be a way to finally get his medication adjusted . Adjusting his meds myself im still too scared to do that right now im not at that desperate point … yet but it is in my thoughts and if all else fails and noone wants to help us adjust his meds and if we cannot get him to another doctor ill do what i have to do to help him and i will try the suggestions you gave above and see where that takes us thank you so much !!
Hi, I just want to say we all feel your pain and know that your not alone. I will first start by saying. I think it’s really good that your son is trying to live on his own. As a parent, I know you don’t think that he should be living on his own, but you try to support him even if you don’t think it’s a good idea. My son is schzo. He just had his first episode in Sept 15"… We caught it early by having him commited and they put him on medication Risperdal)… If you see my son, you wouldn’t be able to tell he’s schzo, unless you talked to him and hear all the stuff he talks about. He come off of his Meds and end up really delusional And back to the hospital he goes. Well, he is on a Invega shot. He don’t like the side effects. He do look flat by the face like he doesn’t have any emotions, but other then that… He is doing very well… Although, I don’t think he should try to work a part time job right now he really want to work and after a reminder from @Hereandhere to support him on his choice and try not to worry about what will happen. It’s good that you and your husband supporting him in his choice to try to be independent. That’s want my husband and I are trying to do, plus it will put a little cash in his pocket to buy him things like cigerrettes and other little thing that he likes…We will continue to provide him with food, shelter, clothing, love and support. If he don’t get his job, it will be ok too, but it’s just good to see he’s trying…
I understand your frustration about the doctor. How is he’s being over medicated? Have you tried to find another doctor for him? Whenever, I take my son to the doctor. I make sure he signs that consent form so I can communicate with his doctor. I have a Advance directive on him and just got him to sign a power of attorney form on this week. Can you talk to your son and asked him to sign a consent form? I’m sorry you and your son is going through this but know that you are not alone and we are here to support each other… I’m new to all this and have learn a lot from this site and reading about his disorder. Hugs to you!
The most important question is how does your son feel he is doing?
From what you have written, I think the providers are asking parents to step back and see how your son interacts with his doctors and other providers on his own.
If this is something he wants to do, then great. If not, your son has the right to bring you to appointments and to sign a medical power of attorney to keep you in the loop.
My mental illness causes spaciness, lack of focus, decreased concentration. Every episode makes it worse and yes some of the meds increase cognitive symptoms a bit. I haven’t been consistent about taking medication and am disappointed that it’s true in my case that more episodes equals more cognitive problems.
I want to support you by saying you know your son better than a doctor does, of course. And yes, it is enough for them that he’s walking and talking. My opinion: don’t change your son’s meds without a doctor’s input and oversight. Where we live, a person on Medicaid can change doctors.
oh i wasnt aware that he could sign a consent form to allow his doctor to talk to us i wish we were aware of that a long time ago ! thank you yes i will have him do that at the next doctor appointment yes he does want a job too and he needs to get out of that apartment and stay buisy doing something so hopefully very soon we can talk to his doctor he seems like a nice man maybe im too hard on him i just felt frustrated - have felt frustrated for a while just felt the need to vent im so glad i found this website - there needs to be more communication happening since we see him every day and pay close attention to him and can help in his treatment if we could just communicate with him he would know a lot more about how he is really doing he sees him briefly . I didnt think it was at all possible for him to talk to us patient confidentiality and him being an adult but im really excited knowing there is a way around that .
but yes i know he would love to have a job again and it would do him good as long as its not too stressful or demanding he wants to go back to a store he used to work at and bag groceries im worried that he is still too spaced out thats simple but pretty fast pased also and you are expected to keep up with customers but that can change very soon i hope ! he hasnt put in any apps yet i think for right now just volunteering and staying active at his pace is best he is still adjusting to a lot of changes right now but i know he would of course love a part time job but hell let us know when hes ready baby steps
but its so exciting just having him get his own place hes my first child to ever do so im nervous but happy decorating buying stuff for it its such a cute little place very close to our house its just a studio but its just perfect for him and right across the street from some woods which is just a nice view and i put two chairs on his porch so he could sit out there and smoke and he hasnt made too many friend yet there but hopefully he will there is one older man he has made friends with a big concern of mine at the moment is him not being lonely and too bored so i was thrilled that he started socializing with this man its a kitchen bathroom living room and bedroom area which is separated by a door so its really a one bedroom i think and 3 closets and definately this is the best he has been in the last 2 years so i am happy and even happer now that he can do something so easy to allow us to talk to his doctor we still have a lot of learning to do about all this so thanks !
oh i didnt know he could do that either sign a medical power of attorney ive heard of that but i thought i was a very complicated process with courts and lawyers exc.
He does realize that he has a very hard time focusing and thinks its the medication too or is worried it is i always tell him to tell the doctor but i dont think he does or maybe the doctor doesnt want to ? actually the reason why we had to take over his meds was because we discovered that he stopped taking them for like a week and didnt tell anyone antidepressant and all just cold turkey and i came over and he was very upset and crying and so we got all meds out of the apartment because of his past suicide attempt i didnt want to take that change as must as i question the meds hes taking its not good i know to just stop taking all of them all of a sudden like that so now he has been taking all his meds again and is feeling better he was starting to have hallucinations
yes it may be caused by his illness i just want to rule out the possibility that its not from the meds also i cant wait to talk to the doctor (wooohooo talk to the doctor !) about this new suppliment " sarcosine " that helps cognitive functioning and see if giving that to him would not interact badly with his meds whether its covered by medicaid or not doesnt matter it might not be as it is a supplement but maybe anyways its not too expensive i hope he can try it also there is ginko biloba that helps cognition so i will ask the doctor about those (he would forget to ask) have you ever tried a suppliment to help with concentration?
At the doctor’s office, your son would request a consent form for the doctor to share information with you and it would only apply to that doctor or practice. Every doctor’s office has them (at least where we live).
If you have legal questions on this type of thing - the Treatment Advocacy Center has lawyers that can answer questions for you, for free. Just call them, and I think they are usually helpful for people:
