Family and Caregiver Schizophrenia Discussion Forum

Getting son to accept his disorder


#1

Hi! I’m new here and my son likely has schizophrenia or schizoaffective disorder. He has an undiagnosed psychosis (per the doc) and from reading up on this I agree with the doctor. My son will not admit there is anything wrong with him - which is normal for the disorder. He is 27, lives at home and whenever we (myself, or live in boyfriend), come in the room he runs out of the room. He stays in his room most of the time when we are home and when we go to bed he gets up, stays up most of the night and sleeps most of the day. I believe this is so, it’s hard to track.

We had him at an organization called Windhorse who help people with MI try to get work. They got him a job at the beginning of the summer. He went with a group to a hotel for a few hours, twice a week. They believed he was hallucinating and said that to stay with the job he would need to try a low dose of meds. And they (Windhorse) are pro no meds. In his case, they thought it would help. He refused, hence he lost the job and since only does chores around the house and occasionally leaves the house.

He has not admitted to himself that he has an issue - he says it’s everyone outside of him. Do any of you have advice on how to get him acknowledge his brain disease? Any advice appreciated! Thanks!


#2

Have you got the book"i’m not sick and I don’t need help" by Xavier Amador? There are videos on you tube of this doctor’s talks. I’m rereading this again now.


#3

I saw that in another post. I will purchase tonight on my kindle and I just picked up some Niacin. Thank you - all help is much appreciated.


#4

I have gotten mine to try meds twice using Dr Amador’s methods. Sadly mine stopped taking meds rather quickly both times. I continue to do the Amador LEAP stuff, maybe the third time will do it.


#5

Unfortunately, at this point, my son hides from me when I am home. But I can talk to him through his door. He says he’s not scared of me he just doesn’t want to talk to me or anyone else in the house. I can talk to him for very short limited times. Has your son acknowledged that he has a disability? I’m just curious as I’m trying to figure out what to say about applying for SSI. Like hey, since you aren’t able to work at the present time you can likely qualify for Social Security Benefits which could give you some income and foodstamps?


#6

My husband and I went together to see a psychiatrist that our Family to Family leaders had recommended. Jeb was 30 when he lost the ability to suppress his psychosis at work, he was fired when he responded to what he thought was name-calling by another employee. Jeb’s form of scz advances very slowly. The initial symptoms showed up while he was in college. We had no idea what was actually going on until it was quite advanced. The doctor suggested we bribe Jeb to get him to go to a psychiatrist so he could be diagnosed. We bribed him that we would pay for a road trip to Colorado if he saw a psychiatrist for one year. You need a diagnosis for an ssi or an ssdi application.

I think, but I do not know for sure, that Jeb has told himself that he qualifies for disability because of his transplant. He had worked enough credits to receive his kidney meds under Medicare for three years. I don’t push the point around him, I was just glad he let me apply for him.

Jeb does not think he has a mental illness. He believes the voices he hears are real. He is now 35. Just this summer he began saying we were sexually abusing him. He doesn’t even live in the same house we do. He will yell at our house from his telling us to “STOP SEXUALLY ABUSING HIM”. He keeps trying to report us to the local sheriff. They don’t even come out when he calls them.

He had to go in to sign some paperwork in person at social security to start his benefits. They know that he doesn’t think he has a mental illness, they were careful to not use the word disability.


#7

I applied for my son online and he had plenty of history with doctors, medicines, and psychologist evaluation. I received a call to go to our state office for an interview. My husband and I went with him to the appointment and they saw how hard it was for him to be there and answer questions. He was approved soon after. I’ve attended one other meeting to show expenses and bank account information. He did not want to go on disability initially but I explained to him the insurance benefits. He didn’t fight it. At the time I didn’t know his illness would worsen. I always hoped he would beat the odds. He is noncompliant and I’m so concerned for him.


#8

That sounds familiar. My son started showing signs about 7 years ago or more even. I had no clue it was the beginning of his psychosis, but now it all makes sense. I think I’m on the slow boat for ssi. He has been diagnosed but he will need to sign the form releasing that information to me for the application. Reading all the stories on this forum has made me realize how hard it must be for not only us but for the person with the psychosis. I feel bad for my son but will stand by him as best I can. Thank you for your story. I’m sure none of us expected this from life. I know I didn’t but I have to believe that this is going to teach me a lot about love - not to get to sappy : )


#9

My son has not been hospitalized but has been diagnosed. He is noncompliant as well. I have decided to just provide a lot of healthy food for him. I paint so I’m not much of one for cooking but I think this may be my way to reach him as he has not been interested in cooking lately. It’s hard to accept that is for sure. So hard to go from a kid who had so much going for him to someone not interested in even leaving the house.


#10

Social Security will ask for the doctor to send them the diagnosis information. He will need to sign a form that gives the doctor permission to release the information to SS, but you don’t see that information, it goes directly to Social Security from the doctor At least that was how it worked when we applied.

When Jeb was little and had learned at school about stranger danger and what to do if you become lost, he was worried about it. He asked me that if he was lost or taken by someone, would I look for him? I promised him I would look for him forever.

Trying to be there for him now, as much as he allows me, feels a lot like fulfilling that promise.

Pretty sappy eh?


#11

That is a nice story. We are good moms! I’m likely losing my partner as he won’t live with my son after our lease is up (next Summer). I can’t blame him, however, I choose my son. Things can change down the road and perhaps my son will be able to live on his own. Thanks for the info on Social Security.


#12

Maybe…but your in good (sappy) company.
I think deep down if we could strip away all the other weirdness that fear is the overriding feeling they have. And somehow they know we are there for them.


#13

I have read this book and despite wanting to find it a salvation, have found it to be less than helpful. The author describes one failed attempt after another to help extremely sick individuals. It will drag you down even farther than you already are. To be more specific, it primarily addresses individuals who have been in treatment, believe they have gotten well, and then refuse further treatment. It DOES NOT address the exceedingly important issue of getting an individual who is newly psychotic into treatment. One of the chief hallmarks of psychosis is anosognosia–a complete lack of recognition or understanding that one is not functionally normally. At all. The author–whom I respect overall–does not help us (lay people) to deal with this heartbreaking Catch-22.

At present, my [ex]husband and I are desperate to get our beloved 18-year-old son into treatment. He has had lifelong challenges emotionally, most of which we attributed to our divorce when he was very young, but he also was a tremendous athlete, had an incredibly high IQ, and seemed to function at a high level for years. Then there were diagnoses of ODD, ADHD, and so forth. Halfway into his senior year of high school, he began exhibiting very serious problems at school (failing virtually everything despite his intelligence), etc., etc. He did graduate, but barely. Since then, he has not gone on to college (despite his wish to, and his acceptances), and he was not even able to stick with his summer life guarding job for more than a few weeks though he has worked diligently every summer since 15 years old. He is now barely functioning. He is up all night (X-box), sleeps all day, and has no friends anymore all all. The few he did have are off at colleges.

We would like to find support groups in our community (Westchester County, New York, Mount Kisco specifically), and we are desperate for advice to convince our son that he needs help. It is such a grot4esque dilemma that one of the chief hallmarks of serious mental illness is the inability to recognize that one is ill. We all need to step up and call this what it is: A Brain Disease. Not a Mental Illness. A disease like Diabetes, Cancer, etc., etc.

Please respond if you have any thoughts/suggestions for us going forward.

Thank you.


#14

Hi Deborah,

Have you been in contact with NAMI yet? https://namiwestchester.org/contact/

The groups are usually all volunteer and though NAMI the organization is not allowed to give referrals, individual group members will know local providers.

Depending on how ill your son is, he may or may not be able to understand that he needs support. Many on the forum read this book: I Am Not Sick; I Don’t Need Help by Dr. Xavier Amadour. There are many strategies in the book for good relating and communicating with someone who has become ill with sz.

I hope your family finds what is needed.


#15

Deborah, I’m sorry that your son has this disease. It is heartbreaking to try to help someone who doesn’t know they are sick or want help. I usually focus around what he talks about and then encourage him to pursue anything healthy remotely connected. It is a fine art and we have lowered our expectations quite a lot.
We live close by to our son so essentially we are his universe. I could spend the rest of my life trying to build a life for him and risk living out the rest of mine. I tried for the first couple of years and wore myself out. He never was able to follow through on his own. He doesn’t drive anymore nor wants to. We get out once a week together and I cherish the times he is able to talk and make sense. Don’t give up trying to connect to him and build trust. You don’t sound like the type of person who will research and seek help. I pray you find it early. There is a lot about this that we cannot control. We didn’t cause it, can’t cure it, and can’t control it. You have found a good place for support.


#16

Thanks so much. I just reached out to NAMI today, both by phone and email, and am awaiting info as to where my son’s father and I might go to attend meetings.

As for how ill our son is…very. It has been a heartbreaking nightmare to see him going from somewhat dysregulated to extremely dysregulated to OMG.

As I’m certain all of your children are, our son is (was) the most wonderful human being. With issues, yes. But no one could predict that issues (seemingly finite and with an end in sight) would lead to full-blown mental illness.

We are devastated, heartbroken, grief-stricken, and all the rest–but our most immediate concern is that our son gets into treatment. My wish is that he undergo an in-patient clinical evaluation, diagnosis, Rx treatment, talk therapy, and everything else applicable, but this seems unlikely.

Therefore, I am hoping to hear from others who have dealt with such dire situations and have any guidelines and success stories going forward.

Again, my sincere thanks.


#17

Hello, Mom2,

I am so thankful for your guidance. Yes, I AM the sort of person who continues trying to connect with my son and build trust. Each and every day. And, like you, I have lowered my expectations. They are now down to nothing. He is so smart, was once so engaged, and is now so seriously ill and so seriously compromised. My grief is beyond anything I have ever experienced, but I try to connect with him multiple times a day to let him know how much I love him and how much I care. Serious mental illness is no one’s fault–and I only wish medical science were far more advanced so that we could eradicate this once and for all. I am not in a good place, but he is in a place I have no concept of…and I worry every moment about how much he is suffering.

Again, thank you for your support. I am very appreciative.


#18

My son has been hospitalized fourteen times and has had two long stays. He still will not accept treatment. He is so against the medicine because of the side affects. He had a rough night this week and I gave him a Zyprexa to help him rest. He didn’t take it. The next day I saw it still laying where he put it and I offered it again.
He slept 14 hours and was at first cordial and talkative. Then turned to demanding and threatening. It took a bit to calm him down. I feel that these two extremes are what the choices are for him as he hasn’t found a medicine that doesn’t make his skin crawl.
I set an appointment for next Wednesday. We’ll see if he will go. I’d like him to get on the Invega injection.


#19

Dear Mom2,

I do not know enough about what you are experiencing with your son to offer any consolation or advice. As you would know from my first posts (today), we are in the early stages of this dreadful situation and are reaching out in desperation for advice and guidance.

I hope you and your son will find solace, just as I hope the same for myself and my son. And all else who suffer along with those who suffer these debilitating illnesses.


#20

Mom2: As you may recall, our son started the Invega Sustenna monthly injection during his third recent hospitalization. At first, we were not hopeful. Now, we are starting to see some stability, and our previously very non-compliant child is willing to take his next injection next week (fingers crossed). To us, it looks like he’s gaining insight. We can only hope.

To Deborah: It’s possible you may need to be ready for forced hospitalizations and forced medications. That’s the route we had to go. It’s very painful for parents to experience all of that, but critical life-saving learning needs to take place. In 1.5 years, our son went from total non-belief and non-compliance, to some semblance of insight and willingness to take monthly injections. We still have miles of uphill work to do and things may fall apart at any moment, but hopefully it’ll be 2 steps forward and just 1 step back.