Hi,
My son is 35 and has been diagnosed with schizoaffective disorder bipolar type since his late teens. There were many good and bad periods- hospitalizations, commitments, homelessness, etc.
Approximately, 4 years ago he hit rock bottom - homelessness, etc. I told him if he continued his meds and attended treatment, I would help him with SSA, etc. Long story short, I was able to get him SSI after one initial denial and one successful appeal. He was so completely nonfunctioning in the initial interview with SSA that they asked him if I could represent him. (This was of course, followed up in writing.)
I got him medical insurance through the state and set him up with one psychiatrist and a therapist. (You may know that when you rely on the āstate systemā, every time you get a new case worker or facility you wind up with a different psychiatrist / therapist from in their own network/system.) I worked with him and his insurance to get a consistent medical treatment team and a primary care doctor.
We went through many rough patches of intermittent hospitalizations. He has no attention span and working with him to get these benefits accomplished was often difficult. We persevered as a team. But, once the SSI started there was a degree of stability/calmness.
This enabled him to have stable housing, food, clothing and medical attention. He started to take classes and become involved in a church and social activities. I was able to keep up with the endless stream of paperwork needed to keep his benefits coming.
Fast forward, he was admitted from his home/facility to the ER within a week of his birthday. Our best guess, he stopped taking his meds and started self medicating (either alcohol and/or drugs) I had nothing to do with with his hospitalization. In fact the facility gave me the wrong name of the hospital and I spent several hours calling area hospitals and the coroners office before I located him in a hospital.
He was in the hospital for 30 days. I called everyday and left a message for him. I also called and asked that his doctor call me. Yes, I get Hipaa. I didnāt expect the dr to tell me anything; but, I did expect the dr to listen to me about my sonāsā medical HX. He would not sign an ROI and I never heard back from anyone. For 30 days, I heard nothing from anyone.
So my son was released from the hospital and I met with him at his facility the next day. It was not a happy homecoming. There were no hugs. The sheer vitriol from him was unbelievable. He blamed me for having him admitted to the hospital and for the commitment procedure. I did not . He also accused me of mismanaging his SSI and told staff he wanted a new payee representative.
Over the last week, communication has been limited to a few short 3 - 4 word texts.
I have advocated for my son at every turn (and yes there have been times when I supported commitment and times when I opposed it). I have over the years been able to separate the mental disability from my son the human being I love. I am tired, angry and frustrated. I quit.
I canāt keep going through the cycle anymore.
Yes, I understand itās the illness and under the illness is my child whom I love. But, I am tired, angry and frustrated. I quit.
I am not suicidal. I am tired, angry and frustrated.
My sonās therapist gave me the info about this site. I met with his therapist to talk about detaching. I have in the past relied on NAMI, etc and my own therapist. I spent a week reading the posts. This mental disability is cruel.
I will gently distance myself from my son. I canāt keep going through the cycles anymore.
He is under court appointed out patient commitment. He has a medical team and a benefits team. He has a support network in place.
This is the only forum where I can say this out loud and have some hope people will understand me. I will always love my son. I will be supportive when I can. But, I need to step away and limit my time with him.
Thank you for listening.
