Family and Caregiver Schizophrenia Discussion Forum

New member to the forum

Hi All, Just wanted to introduce myself and share our situation. Apologies if this is too long. My younger brother (31) was just diagnosed Schizoaffective. Diagnosis since late teenage years was bipolar and Aspergers, and has been on disability since although he wants to work.

We have had a difficult and complicated relationship since childhood. He has always been difficult for me to be around, both due to his mood swings, behavior, and inability to communicate. Due to my own PTSD/triggers and frustration from being around him, I have had limited contact/communication with him over the last several years. Any brief contact in the past has lasted about 5-10 minutes before an escalation. Conversations are one-way, and his only interest has been discussing marijuana and government regulations on it. So I had given up and removed myself from my family for my own sanity. I moved away for college at 25, and my family followed to my town, so there are codepency. So I moved away again at 31. I told myself I had grieved the loss of a brother and a relationship I would never have.

This winter he disappeared to California and was homeless for several months, which I was unaware of due to no communication. Out of the blue I started receiving unsettling texts and phone calls from him, talking about an imaginary person speaking to him, who wanted to talk to me, and sending pictures of grafitti that was communicating with him and telling him what to do. He spoke of a ghost that was following him, whos identity kept changing. He was convinced that the grafitti gave him magic powers and was causing him to run across streets because he felt he had the power to stop traffic. He was picked up and hospitalized 3 times, and I ended up having to fly out to pick him up and bring him home.

The whole experience has been traumatizing for all of us involved. I have moved back to my old town to help mother (who is also on disability for mental illness) who has been handling this alone for the past several months while he is waiting for an assisted living room or apt (she has no other family to help), and has been trying to keep him at the house so he doesnt go homeless again, but he has been porseverating about going back to california. Which has been difficult for all of us because he is an adult and technically does not have to continue treatment.

This has been difficult for me as a sibling, because I want to focus on my own life and feel like I am putting it on hold to take care of family. But I also feel extreme guilt and selfishness if I were to leave my mother to deal with this on her own without any support or help. I am overwhelmed and fearful everyday of the future (I have yet to start a family of my own and fear how this situation will effect my relationships, and now the prospect of being sole caretaker for my mother as she ages, as well as sole caretaker of my brother when she is gone (distant future but still very much a fear))

I am hoping to hear from others shared experiences, especially from a siblings perspective, know that I am not alone in this and get feedback on strategies that would help me cope with my own life and ways I can help my brother and mother while creating boundaries for my own health and sanity.

and you should…yes

My best suggestion is to take a NAMI Family to Family class if there is one in your area. National Alliance on Mental Illness also has Family support groups. I have seen siblings in both the class and the support groups. Both are provided at no cost to those attending. Is there NAMI in your area?

Hi ka239,

I agree with GSSP; you should focus on your own life. Most likely your brother will figure out a way to make his life work, especially being in CA, where there are more options than other states.

Continue to support your mother as best you can, but go on with your life. You deserve to start your family or career without worrying about your brother. It sounds as if he will be OK.

If you must interact with him, give him your best wishes and let him know you love him and care about him. That will mean a lot to him.

Each person is different in their sibling relationships and has to decide where and how they care to be involved. My daughter and her brother living with SMI are very close, both before the illness and after. It is not healthy to ignore your own needs and desires in life but it does not have to be all nothing. Would there be value in learning as much as you can? What would you do if your brother had diabetes? Or was in an accident and became a wheelchair user? Have a nice life?

I have taken the family to family class, several years ago when we were just dealing with a bipolar dx, do people ever take them again as a refresher?

I don’t know. There is no cost to participants for the class, but it does have a cost incurred by NAMI and the time of the volunteers who facilitate and I’m sure they want to have room in each class for new participants. Can you refer back to that thick notebook they gave out in the class? I would probably want to look at additional resources to learn more. I am appreciating the book I am just now reading “Surviving Schizophrenia, A Family Manual” by E. Fuller Torrey, M.D. Be sure to get the 7th addition which came out earlier this year. It is a highly recommended book by a highly respected medical doctor.

@ka239 - I can understand how you would feel overwhelmed and fearful for your future. My daughter (37) and I have had these same conversations about her concern about what will happen when I am older and possibly need care and what she then would do about her brothers care. He has schizoaffective disorder.

Regarding myself, I told her not to worry about me because I have my name on wait lists of preferred senior residences I have visited and would be quite happy to live there.:blush:

We have discussed myself setting up a trust fund for her brother and that she would then be the executor of the estate so she can then decide if and how much she would be involved with her brothers care. Sometimes it is best to have a third party responsible for dealing with providing care so there is more opportunity to have the kind of relationship you want with your loved one that has less conflict.

I was told you can take the Family to Family course as often as you like. It’s a lot of information to take in and quite often the info you absorbed back then would be different then what you need now. Also, there is nothing more healing then being with a group of people who live in your area and know the resources as well as living through the same traumas as yourself.

I would recommend joining this class again to find professional resources to put in place for both your mom and your brother. They need a team to help them and one person cannot be a team. What you are dealing with is too much for one person!

With my son it is mostly one way conversations. He likes to hear about whats going on in the life of the family even though he may not say much back. I also talk about the weather and my hobbies or a movie I watched.

Hugs to you.