Family and Caregiver Schizophrenia Discussion Forum

Brand new to this....looking for advice


#1

My son is 33 and has a brain injury from a car wreck at 18. Over the past 8 years he became more and more delusional with hallucinations. He is on SSDI because of his brain injury which occurred just before his 18th birthday and he has worked part-time off and on over the years while receiving SSDI. He is also on my Blue Cross as a disabled adult diagnosed before the age of 18.

He had a psychotic break a few weeks ago and cut himself over his delusions about a famous singer and was diagnosed as schizophrenic while hospitalized for 2 weeks and for the first time put on meds which he has finally agreed to take after years of my asking. Before he was released, I arranged for him to go on to a long term facility an hour away. Because he lacks insight, he doesn’t understand why he can’t come home and go back to work. His SSDI covers a little over half of the cost of the residential assisted living center he is in.

I feel sad and depressed and weepy since learning of his diagnosis and worried because I don’t think I can continue to offer him the amount of care he needs since I work long hours. I called NAMI 6 days ago in my county and left voice mails and e-mails with 2 different offices but I think since it is spring break and staffed by volunteers, they aren’t returning my calls. I went to an agency in my town that provides outpatient services called Life Path and they wouldn’t give me any information since I didn’t have my son with me. I got this website after calling the NAMI National number.

I think I need a support group for myself to know if I a doing the right things and some advice about what is available- especially in Texas for housing assistance and options for treatment - I am in the Dallas, TX area - for caregivers of schizophrenic adult children. Any advice would be so gratefully appreciated. Thank you all just for reading this…


#2

Hi, We’re glad you’re here and sad for the reason.

I hope you will read through the old posts a little bit. It sounds like you are doing what needs to be done for your son and that he’s in a safe place.

Maybe your son will give you permission through a letter and a power of attorney to set up an appointment at an outpatient services agency for when he returns?


#3

Welcome to our forum. Sadly, head injury is a well-known factor in development of psychosis / schizophrenia.

I think you will find this forum very helpful for your day to day support needs. We have thousands of members who are very supportive of each other and who log in and comment frequently. We also have an app for your phone (android or Apple) so its something you can easily access any time of the day.

At the same time, I do recommend you try to join your local NAMI as they have knowledge about specific resources in your area that may be helpful. Have you gotten any information from the NAMI Dallas?


#4

No NAMI Dallas or the one in my county has not returned my call. I will have to stay on top of them for help I guess.


#5

Some group home / boarding home resources that might be of help:

https://namitexas.org/supportive-housing/

and


#6

I did a search on google for

https://www.google.com/search?client=safari&rls=en&q=group+homes+mentally+ill+dallas&ie=UTF-8&oe=UTF-8

another resource:

http://www.211texas.org/housing-choices-finding-a-place-to-live/


#7

Wow. I had no idea these places were available! Although the place I have him in now specializes in mental health issues, it is expensive. One of these homes might be perfect if I need a more affordable place. Thank you!!


#8

Welcome apowell, I hope we can serve as your online support group while you continue to look for one in your area. Contacting a NAMI office can take time. I had contacted my office in February years ago to find out about Family to Family classes, no one answered, I left a message. They returned my call in JUNE letting me know a class was going to start up. I probably should have been more persistent. There are usually NAMI support groups that meet once a month. Our area has one for families with young children suffering from brain disorders, and several for families with adult children. Our area has some for different languages and one that is an “all skate”.

Are you familiar with NAMI’s Family to Family class? Often support groups are formed by the class members themselves and they continue meeting after they have graduated. The volunteer leaders don’t set up such groups, the class members do it themselves.

I have a 36 year old son who has scz (I prefer to shorten schizophrenia) My son suffers from the symptom anosognosia also. My son refuses to take meds for his scz because of his anosognosia. Is your son willing to take his meds? Hope


#9

Yes, my son takes his meds because the hospital threatened him with a court order if he didn’t and that got his attention. So, he doesn’t realize he has a choice even while in the residential center. He knows he has a brain injury and he trusts me when I tell him that although he thinks he is fine, he is not. I relate it to when he was in the hospital after his brain injury and wanted to go home thinking he was ok but he didn’t realize he wasn’t. I started telling him years ago that he may begin to suffer from early onset dementia and would not realize it. He thinks this is what all the fuss is about. There is no way he would believe he is delusional, paranoid scz…I also didn’t let him know he had a choice about the residential center. I told him if he didn’t go he would end up in a long term psych hospital. I knew I needed to act fast and get him transferred rather than allow him to come home. Otherwise he would never go. I suffer over this decision because he is homesick and wants to go back to work but I know he is med compliant now and getting better care. I just hope I can figure out how to make him as happy as possible whether there or back at home at some point.

Yes, I need a family support group to help me navigate options for my son so thank you for reinforcing NAMI. And thank you for replying. It makes me feel better knowing you and others have gone through the same things.


#10

Hi @apowell and welcome to the group. You’ll find a wealth of information and support here. My son is 28 - dz with some kind of psychosis. He has no insight, not med compliant, lives with me and isolates. I’m under a lot of stress about an upcoming move in May and I hope I can get him out of this house and into the next with little drama.


#11

Just realizing that the next step might be your son working with a really good case manager in the area.


#12

I am so glad your son is taking his meds in the residential setting.He will be homesick at first, give him some time settle in and you some time to adjust. Since everything takes longer with brain disorders, figure much longer than you would expect a settle in period to take.

You really did some fast work there on the transfer.

If it does work out to be a good placement, can you afford what his ssdi can’t cover? Sorry to ask so straight out, we have to worry about the money in this business. Does your area offer a case manager? Do you worry that a case manager might not understand what you have in place with your son? By this I mean, the great steering you have done to get him where he is? I do make sure to update my son’s people with how I am “handling” my son. Sometimes it feels more like wrangling than handling. I don’t want them to mess up what I am working towards, letting them know helps.


#13

Hello and welcome to the site. So many of us parents here wondering if we are making the right choices.for our loved ones.
My son has also suffered a TBI. He is currently committed in california.
I think you have made a good choice for your son. He may gain some insight, having professionals working with him may give him some insight and understanding to his condition.
He is so young. It must be very hard for you, keep up the good thoughts and stay in contact with your son.
As far as NAMI, I too experienced a lack of help. They had good advice but no actions. We live in a very small area. After my son accident, I did not get the help he needed, the system in california is really lacking in post care for MI and post trauma care.
So glad you are here, take care annie


#14

Annie, I is so good to know someone else has experience with TBI and then scz. Thank you for your post.


#15

I don’t know how to go about getting a case manager…but I will certainly look into it. Thank you for helping me come to terms with homesickness. It makes me feel terrible when he asks to come home but I am hoping it will get easier for him. I pick him up once a week and bring him home and also to shop for day trips. One bit of good news also is that I believe he is having fewer delusions based on his conversation with me…either the meds are helping or he is worried that I might leave him there if he talks about odd things…I tend to think its the meds because I have never argued with him about his delusional thoughts. Oh, and yes I do worry about the cost of keeping him in the residential center. It’s $650 over his SSDI check each month. I will pay it if he needs to stay there and put him on the waiting list for HUD housing assistance - although I have heard it could take up to 20 years to get HUD funds!


#16

Yes, I need to look into getting a case manager. Thank you for bringing that up.


#17

Annie,
How old was your son when he had his TBI and when did he begin to exhibit scz symptoms? How old is he now? Just curious.


#18

Hello Diane and thank you for the welcome. It sounds like you have your hands full with your son. It is very difficult when they have no insight. I am sure like me, however, you find good support here.


#19

I have my best results by going into the local NAMI. They still don’t have all the answers. Do you have mental health advocates there? If so probably best to talk to one


#20

Thank you, I attended his intake at the state mental health office where he was assigned a case manager and a psychiatrist. My son gave permission for me to attend and discuss his case so that was really helpful. I was able to help him with his history and paperwork. He did a good job of talking about his delusions and paranoia which will help them to develop a plan for him. I feel much better about things now.