Long Run Solution

My adult son ( age 32) has schizophrenia and is going downhill. Since there is no cure for schizophrenia and I think the long-term prognosis is not particularly optimistic I am wanted to know if anybody knows what options are out there once the family can no longer care for him? Ae there assisted living places or state institutions (scary when I think of Nurse Rachet). Things are getting pretty tough for me and my wife and there is always the possibility we may predecease him, so want to be thinking about long term options. Can anyone offer opinions and knowledge ? Thank you much

Hello and welcome!

I'm the Schizophrenia moderator, I've been out of pocket but saw your post. I think perhaps it might fit better in Significant Others, Family & Friends. We can always move it back if needed. Given that it's been a few days since you posted, with no replies, I don't feel as if moving it's going to be detrimental at this point.

shugs23 wrote:Since there is no cure for schizophrenia and I think the long-term prognosis is not particularly optimistic

I suppose that depends on the severity of his schizophrenia. My personal experience has been otherwise, but it has been my understanding that delusions and hallucinations generally improve with age, as well as the propensity to self-medicate. But then I don't know his exact situation. Or what sort of medications he's on.

I'm responding from the position of someone who had an extended family member with schizophrenia. And this is discounting the perception I've been given online that symptoms generally improve with age. I don't know how many mental institutions really exist any longer- state run long-term facilities seem to have gone the way of indoor shopping malls- all you have to do is Google Street View a lot of California to see the amount of homeless on the streets- not all of whom are going to be there solely because of drug use. I hear that's because there's a dearth of institutions.

My family member in question was able to live at home for a good bit of his life, but like you speculate, eventually that becomes impractical- you'll always be older than him! When my family member ('C' for short here on out) was no longer able to be cared for by his remaining parent, he went into a group home. And stayed there a number of years before having to go to a nursing home- he had other issues that might or might not have been related to his schizophrenia, that caused the necessity of a nursing home. And even that what could be attributed to schizophrenia, also keep in mind with my own experience, that C had been in and out of mental institutions (for short to medium term treatment) since the late 1960s and early 1970s in real life Cuckoo-Nesty places.... some of the meds he was on had some pretty nasty long-term side effects, if I recall, and I'm sure some of them dated from the 70s. But it was what he was stable on, and attempts to change his meds in later years failed miserably.

The point I'm trying to make is that while I don't recall specific medications, I'm willing to bet that the state of the medical art has changed a lot since then, and medications have probably changed a lot, too. So C's experience isn't necessarily going to be your sons. Also C's schizophrenia was probably on the more severe side of the scale. But I really think a lot of the care he needed in his last years probably had to do with meds that probably aren't common any longer. But that's just my opinions and guesses.

So yeah, there are group homes you could probably get him into. I'd be careful with individuals caring for a small handful- C's parent got pretty badly shafted by a couple that was taking care of C for a while in lieu of a larger group home setting. We're talking identity and financial theft. I would personally have more trust in a brick-and-mortar group home, run as a group home. Than a person or a couple who 'have experience with this'. But that's just me, I'm sure there are good people out there, just reminding that there are also people that will steal you blind if they get half a chance. I'm sure a proper group home is going to be bonded and licensed.

I really don't know the state of assisted living outside of a more group home kind of atmosphere- I know traditional assisted living facilities usually have 'memory' wings/floors for Alzheimer patients, but psychotic disorders? No idea how common that is. If I had to wager, I'd say your son would most likely end up in a group home with others that have mental issues necessitating supervision but not the kind of personal care that rises to the level of assisted living. C was pretty happy in his group home- even got himself a girlfriend that also lived there a while. I mean, i wouldn't want to be in a group home, but clearly there are worse places you could be. It's not a prison. It's not solitary confinement. He had his friends, he had his smokes, he could be checked out for the day, he arguably had more of a social life while he was in a group home, I'd think. It wasn't bad.

Of course a lot of that also might depend on how your son does on meds. As long as his doctors weren't trying to tweak his meds, C was fairly stable- and when he wasn't, well that's when he would have to go to the psych ward or a mental hospital for a short time to get back on firm ground, then back to the group home. It happened on occasion.