Family and Caregiver Schizophrenia Discussion Forum

Caregivers are alone, help, opinions appreciated, new member

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Have you tried talking with other families in NAMI Alabama? NAMI is a great group of families in similar situations and there is usually other people who can share good ideas:

I am a paralegal, and it sounds to me like what is needed here is a Special Needs Trust. An attorney in your state who specializes in estate planning can be found at Good luck!


Dear Greg,

Welcome to the forum. It sounds like you are having a really hard time right now.

What I would encourage you to do today and in then near future is to relax and care for yourself as much as possible. You have your own place on the weekends, which is good. You feel despair, which I also feel often.

Rest, regroup, re-orient yourself to the fact that you do not have to plan out your family’s life today or tomorrow, not even next month.

You are doing your best. You love your wife and daughter.

Hi Greg,

Are your wife and daughter on social security disability or ssi? My apologies if you have already said in another thread. Hope

Not at this time, working it now for my daughter, when I pass wife will have a significant SS annuity.

No available time for this type interaction…

From what I understand, the Special Needs Trust is the way to go.

It’s specifically for Special Needs, so it can’t be used for their day-to-day care - this will allow your wife & daughter to max out all public assistance & hopefully prevent it for being taken for routine care.

I live in Virginia. Here, we have Intensive Community Treatment programs that each county’s mental health department runs. In rural areas, 3 or 4 counties may group together to have a central agency.

They can do a lot of things, like med management, driving them to & from appointments, and basic caretaker stuff. They would work with your daughter under dual diagnosis. They can help with housing & things like that too - basically, most of the things a caretaker would do. They even take trips to the beach or to go camping.

I think it’s a great program, but my son isn’t really ready to participate with them fully, even though he’s seeing a doctor & a case manager through it.

Even though I’m younger than you, in relatively good health, and plan to live forever, I want to keep him in the program so they can step in as his safety net if I’m no longer around.

If it was me, I’d be worried less about the money than who would care for them with the love and attention that you’ve given them.

They’re also used to working with the most severe cases through both medication and therapy. Maybe if you have something like that there, they’d be able to help them improve some.

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I found it difficult to locate an attorney who actually knew how to set up a special needs trust. After making many phone calls, I finally found a recommendation through the local NAMI group.

My SIL who has a son with extreme autism, was told by her social security caseworker to get their wills set up immediately so her son would not lose his benefits due to inheritance.

I agree with slw, the people who will care for them are the important part.

The law firm we found was against us having “back up people” in our will. We did it anyway. We set it up so while Jeb gets a special needs trust written up with all the needed restrictions, his brother gets a larger inheritance. Since Jeb cannot own property and this property would have to be sold, his brother would use that money to buy an appropriate place that he would own in his name and rent back to Jeb. His brother has agreed.

We asked two friends to be “back ups” in case our other son became deceased before us. They would govern Jeb’s trust together and inherit the part that would have gone to our other son.

The lawyer’s objection was that people could take the money and not take care of Jeb. Well, I can only prepare for so much. These other two families are critical support people in our lives now. We have deep attachments to them. Jeb could also become totally beyond any sort of help.

My biggest fear would be that relatives would try to interfere who have no part in our daily lives. - that’s who can’t be trusted in our situation.

yep, its hopeless, as I age I get more cynical, every penny left will be spent up by god knows who, but you know what, F-it, I am going to spend it and live the last couple years of my life traveling when I can and eating loads of good food… Once dead who cares, I will be forgotten quickly…

It is so important to not do too much, You have been doing too much. Your life is equally important. When we do too much we can’t maintain ourselves.

I too was hopeless, fought to be mine on the only med that helped Clozapine. Huge change in his life. Also special needs trust. That way if managed right state can’t mess with benefits. We try to get social security but were denied after a 3 and a 1/2 fight partially because he used dr7gs until he got on the right med. I was suffering so bad myself had to spend 1000 s of dollars for me to get counseling but in the end helping myself was the best thing for me because it was his disease and only he could manage the outcome

was a concept I didn’t understand at first. Letting it be their journey while you have your journey is much harder than it sounds.