Getting son to accept his disorder

Hi Deborah,

Our son suffers from the symptom anosognosia also. We used the Amador methods to get our son to a psychiatrist for an evaluation.

Once we knew it was the wrong thing to do, we stopped telling Jeb he was sick and needed to see a psychiatrist. He had started to withdraw from us and we used Amador’s words to open up communications again. We did listen to Jeb in a supportive manner and worked to figure out by watching him and listening to him, what he wanted.

We desperately needed to have Jeb diagnosed so he could apply for ssi and ssdi. Jeb has a kidney transplant and without insurance he would not be able to afford his immunosuppressives and would lose his kidney. Immunosuppression meds are required every day when you have a transplanted organ. They are expensive drugs.

We visited a psychiatrist who specializes in scz and presented our observations of Jeb to make sure what he had was schizophrenia. I don’t even remember now how many months it took us to actually hear Jeb talking to his voices - and that was while living in the same house with him. Trying to achieve a goal with a mentally ill child or adult child is a long drawn out business, it can take years to reach a goal.

Eventually, after nearly a year, we knew he wanted to visit Colorado more than anything. We offered to pay for him to take a road trip to Colorado if he would meet with a psychiatrist for one year.

The combination of Amador’s work with anosognosia and bribery got Jeb the diagnosis he needed. He saw the doctor for one year and is now on ssi and ssdi.

I am so sorry and do understand your pain and grief. Our Jeb was a beautiful, wonderful son. Smart, athletic and loved spending time with his friends. Our grief for Jeb’s old life will never end. Hope

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Thank you and I wish the same for you. Despite what I wrote, I do see progress. It is slow and you can expect good and bad days. But trust your Gut and do the best you can. That is all we can do.
I have set clear boundaries that I will not back down from (safety for myself and him) and have created a bubble for him. Some would argue too much but I don’t see an alternative as any more attractive in the long run.

My lesson this week is we all are capable of having false beliefs (thank you admin for posting that paper) and God gives me grace and strength as I need it! He will for you as well.

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Hi Deborah - I understand the feelings of being heartbroken and really quite shocked over this (as I’m guessing all of us on this site are). My son has shown signs of delusions for about 6 years, then he had a full-blown psychotic episode last August (2016). He was living in a home that had a basement full of pot plants. We live in CO where it is legal. At times we’ve been hopeful that it was just the pot that triggered this but I am coming to terms with his disease. None of us expected this and it has been quite a shock for me. My son was a star athlete (baseball), had tons of friends, played golf and snowboarded and did a few years of college with good grades and then it all started to unravel. We don’t have anyone in the family with scz so I’m not sure what happened, likely stress. At this point, I’m always just happy when he comes out of his room (and thrilled if he leaves the house - although that could lead to trouble) and I am trying to create a home where he feels comfortable doing that. I can’t change his journey in life but I can try to help him be more comfortable. Who knows, he may be ok with staying in his room and he has the entire house to himself all day during the week. I am wondering if you or your husband could play playstation with your son? I’m not good or interested in those games but thought that may be a good way to partner with your son. My son was taking Chinese herbs for about 10 months which seemed to help a bit. He stopped over the summer and I just cooked a batch for him the other day and then he cooked his own - not sure if he’s taking them or not. Another friend has a son who is bi-polar and the herbs help him from hearing voices. I got him to take that for a skin issue he had but the doc knew it was really for his head. This was one of the things he had to do in order to live with us.
Diane

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Hi, Diane–It is my son’s dream to live in Colorado! I even recently told him that if/when he gets his life regulated (I did not mention illness), I would be willing to move there and establish residency so that he can eventually attend college on in-state tuition.
He has been living with his father for about 4 years because his aggression (ODD) became too difficult for me to handle. So that was my first experience of grief–an empty nest long before I expected it. And then the grief of seeing him gravely decompensate since last December or before… (I documented so much during the years and see that the beginnings of this go way, way back.) Yet, despite his emotional issues through the years, like your son he was so vital, athletic (baseball, lacrosse, snowboarding, etc.), likable, and smart.
As for playing X-box with him, I sometimes go over to his father’s just to hang out with him while he plays. Often he sleeps till 3, 4, 5 PM, so it’s hard to have consistent contact with him. I continually try, though–texting, calling, leaving messages. I always mention my love for him. I also try to get him out, suggesting we go for a walk, but he has only agreed once. I think on some level he is aware that something is very altered and wants to avoid being seen in public.
Regarding getting him into treatment, things are progressing, if slowly. He has to have a court-ordered mental-health evaluation (long story–I had to call the police when he was last here and became very strange and unnerving and refused to leave), which I hope will lead to court-mandated treatment. I was hoping for a full-scale in-patient evaluation, diagnosis, and treatment, but apparently here in New York State judges almost never mandate an in-patient facility.
On another subject, I noted that you may be losing your partner. In July I lost mine of two years due to this very issue. I was in a state of abject shock for a month because he cut off our relationship out of the blue, without any indicators whatsoever. So during the worst crisis of my life (my son), I lost my partner for life (we had made that commitment to one another). It was a terrible loss because I really love him and had expected to spend the rest of my life with him. We live in different states, and I was supposed to move there (Texas) once my son was in college. And that was so close…and then everything completely changed. But like in your life, my son comes first. And like Hope, I will forever “look” for him and be there for him. I also am taking your advice that though you cannot change your son’s journey, you can try to make him as comfortable as possible. I feel very bolstered by that. Thank you. Deborah

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I’m glad that helped out! I got the “his own journey” thing off the web - I couldn’t remember where. But here it is right on this website! 60 tips for helping people who have schizophrenia. It’s # 20. Schizophrenia.com, 60 Tips for Living with Schizophrenia; tips for coping, handling schizophrenia crisis and relapse situations

The stages of grief are a tough one. End the end, of course, it’s about love. (as Hope and I say - kinda sappy - but it’s true). I’ve gained so much help from this forum and I’ve only been on for less than a week. I’ve gone from being frustrated with my son and now feel sorry for him and what he has to deal with (the hallucinations) and how hard it must be just to go to the store. I now have more compassion.

On losing the partner - well who knows what will happen with that. We have until next July. He has been very supportive (emotionally and financially) but can’t live with my son - and he is sick of the snow. Which I totally get. I’m sorry that you lost yours as well. I bet you’ll find one closer to home and he’ll know about your son from the start, which I think helps.

I hope you do get to Colorado!

Diane

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Hi,

I like the idea of “guidelines.” I made so many mistakes when my family member was first ill.

The main things I tried to do that helped or did not make things worse were to keep us all safe and as healthy as possible with decent food and a calm environment.

The calm is not “walking on eggshells,” but more like basic manners and politeness in the spirit of getting along.

Then, as long as there is basic safety and health, you can settle in for the long haul of the illness and taking the time to find what is needed and access it. @Deborah, it’s really good your son has an evaluation regardless of whether or not it’s inpatient. We never know exactly what is going to help or which steps will be the most beneficial.

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Thank you, Diane, and thank you, Hereandhere,

RE guidelines, I decided to take the advice on this forum (not sure from whom) and start viewing the YouTube videos on I’M NOT SICK–I DON’T NEED HELP. I had been frustrated with the book (as I rather aggressively stated!) but now feel more encouraged.

With respect to the evaluation, does anyone know specifically what guidelines psychiatrists/psychologists use to determine a patient’s mental state/specific illness/and so on? Are there guidelines via the DSM that they use? I am hoping that this is a highly controlled and scientific medical evaluation. My concern is that so much could fall between the cracks and go unnoticed if the evaluation is not conducted by a highly experienced, trained, and astute examiner.

Which leads me to my next question. Does anyone have info on the science behind thee brain diseases? Though we don’t yet have a diagnosis for my son (Is it okay to use real names? Otherwise, I’ll just keep referring to him as my son), I would like to learn as much as possible on how how brain diseases get passed on genetically, how they get triggered, and how they progress. Etc. There is so much I don’t know about what I don’t know that I’m not even sure of the first questions to ask. But I want to understand this from every vantage point.

Diane, I am totally in sync with you and Hope on the sappy-ness spectrum (!). Love, compassion, compassion, love. What I can see is such deep loneliness and fear, and I am trying to engulf my son with both love and compassion to just help him keep going, even if it is at a very minimal level of existence. It is clear how appreciative he is of that love, and knowing that it helps him, even if in some small way, keeps me going.

Also, thank you for the link to 60 Tips. I will go to that as soon as I sign off.

Again, thank you to all. I am so gratified to have found this wonderful and supportive group.

Deborah

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My son refused to apply, Intook him to court won guardianship. Then I applied for him he received disability. I just needed help financially in order to help him. It’s a constant fight he knows he’s ill, doesn’t like the diagnosis. As his guardian I’ve felt some relief. Hopefully it won’t last forever.

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The most important thing for us has been to keep our hope alive. We are fortunate to have a psychologist friend who is experienced and has been successful in treating many patients like our son. It’s important to read up on places in the world that have had major successes in how they approach mental illness such as Finland. That has really helped us. The U.S. is considered “slow or behind” compared to other parts of the world, but that can change. Keep positive and never give up. I wish your family the best.

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Dear Ikctymom,

Would you be able to provide more information on Finland’s offerings with respect to treatment of mental illness as well as the other countries you referenced? Though without tremendous means, I am fully willing to go the distance (literally) for my son, whatever the cost.

Thank you.

Deborah

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In Finland it’s called Open Dialogue. I’ve read that this approach has been adopted in New York where they have at least 1 treatment center. I would suggest looking it up and reading about it for yourself to determine if it sounds like something that would fit your situation. There is hope. :slightly_smiling_face:

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Okay, thank you. We live in a NY suburb, so perhaps this will be a possibility. I will look into it first thing tomorrow. Again, my thanks–and thanks, as well, for your closing line: “There is hope.”

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Sometimes having insight isn’t going to happen and it shouldn’t be forced upon someone who seemingly appears to be in denial. It was a big issue with my daughter and it caused unnecessary tension and brokenness in our relationship. I think it’s just another element of misinformation being given to caregivers that our loved ones MUST see and admit they are ill.
When I let go of that our relationship improved quickly and she began to heal, though it’s still a journey.

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@pixelcat - good advice. I’m not pushing him as when we did, that didn’t work out so well. It made him withdraw from the household. I’m still hopeful for recovery, although at this point it seems like a very slow boat.

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Same here it only makes a wedge.

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@Mom2 and @pixelcat - Have either of your children with sz admitted something is amiss or do you just let them be? Are they taking any medications? If they are why do they think they are taking them? As soon as the person assisting my son at a job told him that he had to take medication to continue with the job, my son stopped talking to me and stayed in his room. This was the beginning of us finding out that he was likely hallucinating regularly.

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My son doesn’t take medication and has been hospitalized many times. He says he will to get out but has not stayed on medicine. He just says he doesn’t want to take antipsychotics. He won’t take the injections either and I believe if I made him, he would just leave.
Tough love doesn’t quite work with him. I’m truly not sure what we will do next. We’re all pretty stuck right now or so it seems.
I just try to keep the relationship good and set clear boundaries for what we will and will not tolerate.

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How long has it been and does he live with you? This has been coming on for a long time (now that I know what it is and can see the trail of symptoms) but he had his first full blown episode in August of 2017 at 26. He never thought it wasn’t real and he came to stay with me vs a hospital. I had no idea he should go to the hospital. I don’t think he would have, however. Now he lives with us permanently or until he is able to find his way to ssi and a separate housing situation. I also have the boundary if there is any violence - out he goes. Once he got upset with me and as I was making rice, he poured his coke into the rice. Which has been the worst of it, so not too bad. I got him to take Chinese herbs for a skin issue but the doc knows it was for his MI. They seemed to help.

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I’m not sure everyone is aware something isn’t right, and while I used to believe it was important that she “admit” she wasn’t well, that approach went no where fast. She has never openly expressed knowledge of anything being wrong and that’s fine with me. I’m the one who had to change and in that, she began to improve in small incremental steps.

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First started noticing anxiety at 16 and it kept climbing. Since it seemed to be related to school, we home schooled senior year. He started college but relapsed and had to be hospitalized. Every time he slips back, I worry that he will not fully recover ever.
He lives in an apartment over my work which is next door and most days it works. It is way better for both of us than when he lived with us. He comes home some days to get coffee, cigs and food. It could be so much worse but it is far from optimal.
Feel free to read our past good bad and ugly. I hope it helps and please do ask questions.

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