Family and Caregiver Schizophrenia Discussion Forum

How can I be an advocate when I am 6 hours away?

Hello all,
Thank you for all of your frank and open discussions here, I found this site last night and spent 2 hours just reading and learning as my 24 year old son was diagnosed yesterday with schizophrenia. He has “checked himself in” to a state run psychiatric hospital after calling the police because his phone was telling him to. This is his third hospitalization within two years. Each time he has gone into psychosis, at least one involved marijuana. I live in Pennsylvania and he lives in Virginia and that is a challenge as I try to help him.

Do any of you have adult children who don’t live near you? How do you manage their care? I want to be his advocate and visit with him, but I can’t take off work and drive down there on a regular basis. The last time this happened I tried to do that, and twice when I got down there he refused to see me. When he did see me, all he did was beg me to get him out of there. We did bring him home after he was discharged but after he was stabilized he insisted on moving back to Virginia because his “support network” of friends are all there.

If anyone has any experience or advice for me, I would be so appreciative. I have a conference call scheduled with the social worker and doctor tomorrow morning (Thursday) and don’t even know what questions to ask. I want to make the best use of my time with them, as I have learned that it isn’t easy to get ahold of my son’s caseworkers in between scheduled meetings/calls.

Of course I have a million other questions and am an emotional wreck, but this is my immediate and urgent need. I am so grateful for this forum and all of you who are so open about your own experiences with this baffling disease.
Nancy

Hi nancers,

I am sad to hear about what your son is going through. Each state is different, but as far as I know, once the child is an adult, there isn’t much you can do as a parent to manage his care unless you have been awarded a custodian/guardianship.

Questions I would have for the social worker and doctor: Start with the obvious, that it hasn’t been easy for you to get a hold of the caseworkers. Is there anything to make that process easier? Can they provide you with updates? Or are there other people you can be in touch with to provide you with updates? Is your son going to his appointments? (If he is, that is great!) Is there anyone who can be tasked with being his advocate in VA? If so, ask the caseworkers or doctor if or how can you help that process to completion.

Unfortunately, some times it can take a few rounds in a hospital or jail for the afflicted to decide they want help. If your son is anything like my husband, it is very important that he is close to his support network. Having that sense of community and safety means a lot to him, no doubt, and it would be tough to get your son to want move to PA. Therefore, it will be up to his caseworkers, doctor or himself to find a way to manage life in VA.

As for you being an emotional wreck, that is completely understandable. Please reach out to your support group and keep yourself healthy. We worry so much about our loved ones when they are in crisis and that can be extremely stressful. Keep posting and let us know how you and your son are doing.

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Hello, yes, my son is in a mental facility and is a 15 hour drive and we have not been able to see him in over 2 years. So I can really relate. Like you mentioned your son has to approve the visit. I feel your pain and understand how hard this is.
Please know that your son is being cared for, which is a comfort. AnnieNorCal
Edit: if you can get your son to sign ROI release of information the doc and social worker will be able to tell you what is going on. If your son refuses to sign the ROI there is not much you can do. Wish I had better news for you. I have been in this turmoil for 2 years now, learning to accept what I cannot control, God bless us

Thank you both very much, it really helps to know I’m not alone. The questions you suggested LifeIsHard are good ones, I wrote them down and have a few others I came up with today.

Fortunately Annie, my son did sign the ROI, so I have been in touch with his doctor and social worker and they have been fairly forthcoming with information.

I spoke with my son on the phone today and he is incredibly delusional and paranoid. I still managed to have some semblance of conversation with him and didn’t agitate or upset him, so I consider that a small victory. I am glad he knew who I was and seemed happy to talk to me. It seems so weird to say that I’m happy my 24 year old son knew who I was, right? I have a lot to learn.

Thanks again, your taking the time to respond to my post means more than you can imagine.
Nancy

When in psychosis my son thought I was an imposter, so yes you are lucky. They should be able to get your son on temporary meds and then hopefully he will take them willing until stable. I am not far from my son. He lives with me. I got him on the invega monthly shot because I believe pot and spice (synthetic pot) triggered his psychosis - paranoid sz. Another parents who’s son sz was likely triggered from the same had him on the shot for a year. He went off and is ok. So I pushed for that shot. The doctor was going to give him something else and I said invega and he said medicaid doesn’t cover and I said yes the social worker said it does. Sometimes you have to talk to all of them to get what you want. They were not very available but I went to the hospital daily. My son did not want to see me. But I had a trick and that was to give him something that he wanted (like some of his clothes). He would allow me in to give him that item and then I would stay and talk to the nurses, the security guard, other patients etc. If you do go and he doesn’t want to see you, you could try that tactic - it could even be food. Good luck - we are all rooting for you!

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