Dear Brad,

I usually "hang out" on the lived experience forum, but am also a carer. What you are dealing with sounds massive. I really feel for you, your wife and children. That you are managing is amazing, though it probably mostly feels like hell on earth. Please try to take an occassional step back and see all that you (and even your wife in the midst of her illness) are getting right, and to give yourself a bit of self-care (be it a quiet cuppa or even, if you can stretch to it, an occassional relaxation massage). This can be a vital battery re-charge before wading into the next fray.

I'll be honest. I know a lot about my own illness (after multiple diagnoses over 35 years), far more than my gp. But I know relatively little about schizophrenia. One of my friends from high school has suffered from it since early twenties, but his was drug induced. We still keep in touch.

I also know what you mean about the mental health system here, and frankly the private one is not always better than the public, sometimes worse even. As science it often straight out amounts to BS. I think your analogy is rather apt, for all the limitations you have pointed out. 

You are not being unreasonable. Even where it is possible to be much more specifically diagnostic, say in treating entrenched infections, we continue to be treated by some medical "professionals" as if we are human petri dishes! It is not on, especially when so much more can be done. 

You sound like you are on the right track in asking about personal etiology, and triggers. Keep asking! You will eventually find someone who speaks your language and listens - unfortunately that usually takes too bloody long IMHO. (We have been talking a lot about that issue on the LE forum too. The MH not-so-merry-go-round.) In particular ask anyone in/near your area who has been a MH consumer, as they might offer the best pointers to genuinely helpful help (although it is not one size fits all).

I don't think you mentioned what state you are in. In Vic I know there have recently been changes which make triaging MH needs a bit better, and less of a painful ping-pong game. Being persistent in finding the right MH help is something I know about. I urge you to keep that stubbornness muscle strong in respect of finding appropriate help for your family. Sadly sometimes it is a journey that takes years. I say this not to discourage you but to be real about it. I truly hope this is not so in your case.

The stress must be huge, and the strain of worrying about your wife and the impact on your children. My suggestion there (as the parent of 3 kids aged 6 to 17) is to be both honest and reassuring with them, in language they can understand. They will know something's wrong anyway. They need to know both of you always love them (even if you seem stressed/cranky), mummy's very sick and needs help, daddy is doing his best to find help, if mum needs to go to hospital then tell them beforehand if possible.

I hope this is helpful and makes sense. Children who are unsure of what is going on are much harder to live with and tend to start acting out at home and school. Even though it will take investing energy you may feel you don't have, loving and reassuring your children as much as you can will pay huge dividends in the short and long term.

Another thought occurs re helping with the kids, it might feel rather hard to ask for. I think you would be eligible for some sort of family support with the kids from an organisation like Anglicare (again who will belocation dependent). In my experience they can be excellent; and certainly helped me and others I know when we were either on the brink, or in and out, of hospital. If you access this then be very clear (if you can) about what help you want/need. If you don't know just say so - lay the situation on the table and ask - what can they help with?

I truly wish I could be of more help specifically with your wife. About the only half-sensible advice I can offer is something I heard from another MI friend. Apparently one effective way of living with schizophrenia so it is not as debilitating is to learn which "voices" to listen to, rather than trying to stop them altogether. So ignoring the "bad" ones (or telling them to POQ) and listening to the "good" ones. I don't know how that works in practice, let alone whether it would apply with your wife. Also when she is well enough you might suggest she check out the LE forum.

I wish you courage, strength, and most importantly the help you all need. Please keep in touch.

Kind regards,

Kristin