Family and Caregiver Schizophrenia Discussion Forum

Does this already exist somewhere?


#1

So many of us have been unable to get treatment for our family members. We have been talking about becoming advocates and changing laws.

What our group really needs is to actually help the people with SMI we are close to and keep them and ourselves safe.

For law change, there are groups like NAMI, Treatment Advocacy Center (controversial, but for the very ill who refuse treatment for whatever reason only involuntary treatment works), and others who are advocating and lobbying. Anyone up for it could join those groups.

One of the things we family members are told to do is document the illness.

What people like us could do if we were internet and design savvy is design a website/app(???I don’t have a smart phone so this would have to be on computer or many platforms??) that is a cache of 100% private online diaries with time seals. There would be instructions about what to communicate to professionals and how to document the illness so our family members are more likely to receive help.

We privately enter symptoms/signs, disruptions, “grave disability,” and large problems like threats or violence (no one can see our diaries unless we give them access or print out and mail), attempts to get help, and treatments and appointments that do happen. Also the results of those treatments. Side effects of meds if family member takes them, etc. Whatever is most relevant to treatment.

Every once in a while, when needed, we each individually print these out and send them along with a cover letter to the hospital or police or government or all three in order to try to get treatment. Then we have documented symptoms (actually signs), difficulties, threats, and attempts to get help. This might help our family members receive treatment.

If we found a psychiatrist or other professional to help us understand which information is most useful in getting treatment, the diaries could have categories and a section on the main page instructing the most useful way to fill it out.

Then everyone could have and use this same format. If enough people used it, professionals could eventually be given access directly to truly confidential and very protected diaries from family members. Also be able to upload photos, videos, sound recordings as it seems some people are documenting this way.

Parents for Care has a physical notebook for doctor’s appointments and other. I haven’t seen it, but maybe they’d help with this idea and share that template.

Just an idea for the long term… Then, maybe we find a truly confidential way to compile the diaries into anonymous data and send to legislators and others who could change the laws that currently prevent lots of us from keeping our family members safe.

It seems like there are symptom tracker apps for people living with these illnesses…


#2

I do that, but on my iPhone notes:

I divided it into three sections:

  • Progress
  • Delusional Beliefs and Persisting Behaviors
  • Advancement