@sasone2one I feel your frustration! It angers me how so-called professionals think they know best and then stuff things up in their arrogance. What about holistic care?? The client’s own wishes should be first considered, along with the wisdom and experience of family/carers who know them well as a person and know their history. Isn’t that logical?? It seems logical to me and I think I’m a reasonably intelligent person.
My son had a psychiatrist who refused to support him to reduce his meds even though his previous psychiatrist agreed to support him. But she left and was replaced by several temporary doctors which was obviously unhelpful, resulting in my son reducing his meds on his own - and ending up in hospital.
Anyway, he’s doing well now, thank God. But it makes me angry when I hear similar stories of clients and families not being listened to.
Hang in there, you’re obviously doing a wonderful job caring for your son. All we can do is love them and keep advocating for them.
@sasone2one I sympathize with you – it is extremely frustrating that your son had a medication that worked and then a relapse. I sincerely hope that he can get back on track. Don’t be afraid to ask for a second opinion if you don’t agree with something. There’s not much you can do about his brothers not engaging, siblings either get along or they don’t – it can be for many different reasons. Do what you need to do for your son and let go of anger and bitterness. Best wishes with the complaint and hope you get a resolution.
I think they are going to try to get out of it, I phoned them last week, and said 4 months is long enough to “investigate” and said I wanted a conclusion to my complaint. So far nothing! I’m in the UK I suspect most here are in the states? I went everywhere on different sites all around the world looking for information and knowledge to help my son. Re: the UK when my son relapsed I discovered they have a new policy, called “triangle of care” which suppose to involve the carer? Tbh I couldn’t make head nor tale of this policy, and in my angry moment told them this and said it was a farce. Things are no different than they were 26 yrs ago! That might have made an impact, because my son had some test done on his blood recently and they sent a full print out of every test and the results.! The mess up was down to one person and I’ve been told verbally, unofficially, they are no longer working there, but nothing in writing. As for my son, he is improving, but his character has completely changed. Which apparently is what happens after a relapse.
Just reading about the psychiatrist and your son triggered another incident that happened. My son had a phone saying someone from home treatment was going to phone him the next day. This was days before he was sectioned, bearing in mind it was their fault he was relapsing. The next day someone phoned but not who phoned the night before, this person had a foreign accent. My son thought it was a scammer and hung up. Later I get a all saying the psychiatrist would see him that day, my son goes there and immediately recognises the psychiatrist voice as the “scammer” one thing led to another and my son walked out. Next I am told he was offered a psychiatrist and didn’t engage, so he won’t be having a psychiatrist or any home treatment! That was the Friday, 3 days later after I told them they had to do something, he was sectioned! I agree about the arrogance, as I said to them he rarely saw the same psychiatrist twice and was only seeing one twice a year. They spent 30 minutes with him, where I have been with him 24/7 for 26 yrs. I’m getting annoyed writing this 
@sasone2one Very frustrating! There’s a lot in this field that is troublesome. If you have gastro-intestinal issues, you can easily look up a specialist, or your family doctor can refer you to one. However, it is next to impossible to find Psychiatrists that specialize in Schizophrenia. It would be preferable for families to find their own P.doc that they could maintain for consistency, someone who understands that heightened suspicion is part of the condition. This field could benefit from having more professionals that have first hand familial experience with SCZ. Simply reading about the condition, or observing it in clinical settings, is not the same as having experienced it by caring for someone with this condition. It is super annoying when the professionals simply do not get it — they cannot comprehend what it is like for your son or for you, his caregiver. Urgh! Sadly, this is the case all over, not just the UK.
Yes I agree, several years back I had my own website and a carers forum appropriately named " experts by experience" they both lasted about 10 yrs. I remember the days when he seen the same psychiatrist for years, similar to GPS we saw the same Dr every time we had to see a Dr. So they got to know you, and you them , those days are long in the past. Psychiatrist seem to form opinions from a tick box, the problem with mental illnesses is there are no physical test to confirm anything, only opinions! And then when they mess up like they have with my son, they are not answerable to anyone it seems.
I’m hoping that over time we will see more individualized health care — based on our unique genome and with us more in charge of the information and a team of specialists that can work together across disciplines to provide advice and treatment. I would also like to see the Hospitals and Doctors paid for positive outcomes, rather than throughput! It’s not how many you treat, it is the quality of the treatment that matters. If we tied compensation to outcome, then there would be more accountability. sigh
My son works and I think that helps him conform. He is med compliant and this med- haldol the 5th or 6th try seems to give him relief but he eats a lot! He also smokes a lot of cigarettes … still this is a good run now and I pray it continues…
My son eats so much too. That’s yet another worry. I pray your good run continues too. Thank you
I wish my son could work, he has qualifications prior to his illness starting. The problem is he doesn’t trust people he doesn’t know and gets paranoid. That’s what stands in his way 
he is also treatment resistant and has ended up on clozapine since 2003. That was until they messed around with the medication causing a relapse. After all of that, he’s back on clozapine again. He seems to survive in a bubble with a certain group of people, family.
My son also eats a lot, the medications give cravings for carbohydrates. My son put on over 7 stones in weight, he lost that weight when he relapsed, but the food craving has started up again .
I have a brother who is 56 and has been suffering from schizophrenia for 33 years.
My parents managed him for most of his life . I inherited him when my dad died 3 years ago. My parents kept my brother’s diagnosis and his life a secret from their friends . Their family members knew the truth. They managed to have good friends and have a social life because no one asked any questions.
There is a book called Nobody cares about crazy people. This is an Absolute Truth!
My brother is a burden to me. But… I will do my best to take care of him. it is very difficult considering he does not show any compassion or thankfulness.
For those of you that have sons or daughters that you can actually manage and are actually sweet, you are lucky…
Thank you, I had 3 sons. My first is schizophrenic, the second moved to the other side of the country, and the third has died.
I am hoping my second son will help my sick son when I die. Why should he get stuck with that? I’ve completely favored my sick son, I put him before anything and anyone. It’s wrong.
But, I’m stuck taking care of my elderly mom who was a horrible mother. I do it because I feel it’s the right thing to do. Sometimes I wish she’d die. Sometimes I want to disappear and not have to take care of my son, husband, and mother. Sometimes I envy homeless people! How dumb is that? I imagine living in the woods all alone. I volunteered at shelters and got along so well with the homeless people. I know religious beliefs are outdated in this world, but my faith gets my mind right. When I’m thinking those thoughts of escaping or the feelings and wishes that they would all just die already, I remember that I have been given these crosses for a reason. I have to bear them daily. It’s a beautiful thing you are doing. It’s heroic and you are an extremely decent human being. I feel someone such as you is much more important and worthwhile than the people the world considers great. You will have rewards in Heaven. Thank you
I have similar thoughts …
I wish my brother would die, immediately , right now! I once knew him as a brother, that was 34 years ago. He is can be ok, but he is generally stubborn, tunes out whatever he does not want to hear, and is a disaster in the personal hygiene department. My parents put him in an apartment a long time ago because they could not live with him. He is still in that apartment but only because I have someone go there daily and clean up his mess. If left on his own he would live in filth with poop covering his body and that would not even bother him! He would be definitely evicted!
His brain has clearly degenerated from this disease. So you can see how, I do what I do because there is no other answer, but taking care of him is awful . So maybe I am not such an important person after all . I am just wishing for an end to this misery…
Oh I am so sorry, can’t you get services from the state to help you? Since he is disabled there may be resources you aren’t aware of. And it’s only natural you feel the way you do! Anyone would!! You are obviously a very strong person to hang in there, he sounds like a terrible burden. Maybe you could call a disability hotline to get some answers. Or google NAMI in your area and talk with them. They are so helpful. I hope you have a nice weekend and do something special for yourself…
Dr Bill Walsh, nutrient therapy if you can find a practitioner near you, we have ONE in Indianapolis which is an hour away and there’s a waitlist.
Just today i was visiting my home town 2 hrs away and was eating breakfast. My aunt happened to be in there and stopped to see how i was. She came back over and said in a whispering voice “i was going to ask you about your son but thought it would embarrass you” i said “ Embarrass?? Why would it embarrass me?? He has an illness!” I never hide that fact he has a mental illness. Some people still don’t get it.
Thank you for setting her straight. I too had a similar incident. A person told me her niece has schizophrenia but her sister doesn’t tell people about it, as if it’s a horrid secret. The ignorance is overwhelming at times. It’s everywhere. We can’t even watch Disney movies without a scene depicting a character as crazy. In Aladdin Jasmine appeared mentally ill to by pass being accused of stealing. In Beauty and the Beast Belles father was sent to the “looney bin”. It’s so frustrating that my son’s illness is viewed as a personality defect . He has overcome so much, and I don’t know anyone who is stronger!
In regards to the discussion about referring to schizophrenia as something else- what I really wish they would change is calling the medication antipsychotics. I realize that’s literally what they are but it sounds so histrionic. I think neroleptics sound so much better but I haven’t been able to determine if that’s a correct terminology for APs.
@Cat_Nip I’ve expressed similar sentiments before about psychiatric medication classifications in general. Less so for histrionics, but accuracy because the “anti-“ prefix raises unrealistic expectations of the efficacy and intent of these medications in laypeople.
In most cases antidepressant, antipsychotic, antianxiety and other “anti” medications lessen rather than eliminate symptoms of the diseases they treat. They are but one tool in treatment, but in typical marketing fashion they are sold as “the tool”. They are certainly powerful tools, but they are not recovery in a bottle. The only class of drugs I feel approach being aptly named are mood stabilizers, but this may be just a happy linguistical accident, because eliminating affect altogether is undesirable.
This was likely done with good intentions, because the original umbrella classification as tranquilizers was overly broad and stigmatizing. Much easier to sell Prozac or Zoloft to the masses as helpful, friendly antidepressants than big bad scary, heavy tranquilizers or “tranqs”. Not sure what the answer is, but I find that psychiatrists tended to use more formal terms in the past like neuroleptics but as I recall the term AP rose in dominance around the same time “atypicals” were heavily marketed.