Thanks for the suggestions. I did tell them that he can’t come home. Kaiser is looking for placement for him. I didn’t know how he could have gotten drugs because he never leaves the house except for doctors appt. but apparently, he’s been active on social media.
I actually feel a huge sense of relief that he is not coming home. I can’t live like this and I can’t seem to be able to help him. I retire in about 5 years, I’m thinking of moving out of CA, but I guess he could find drugs anywhere…
Its okay to feel that relief. For both you and your son, this change is needed. Glad someone is now working to find him other placement. Keep us updated.
Cher, Kaiser insurance will not help much in your case. They will discharge after a few days and may not be able to send him to a longer term care facility which are govt funded. Please go to nami office in san jose to get guidance. It is a good opportunity to get help as you have proof that he hit you. Your son needs help for mental health and substance abuse both. Wish you good luck!
You can also ask the social worker to help him get on SSI disability. My son was in hospital for 3 months the very first time, a major psychotic break, and he had an excellent nurse/social worker help him within 3 months. They somehow made it happen quick. By the time he got out of hospital, he was getting his SSI. They also kept him in hospital a couple of extra weeks to give me time to find my son an apt. Him coming back home with me was not an option and they understood that.
I was able to find him something descent, fairly close to me, and I’m the rep payee so I handle and budget his finances. Of course he doesn’t get much, and that’s where I come in and make up the difference.
There are reasons where my son & I both knew that we couldn’t be in the same house. He goes to outpatient therapy and so far med compliant.
I’m only suggesting this because those long term care facilities that everyone is talking about is easier said than done to get into. It’s like trying to find a needle in a haystack, extremely difficult. There is a very long waiting list for the long term care facility for the mentally ill in my area. And of course, the state hospitals no longer exist. They are also becoming extinct.
To be perfectly honest, it’s really pathetic how these types of facilities are so lacking to help the MI. There always seems to be some sort of impossible criteria that one must meet, to even be considered for such a place. It’s really all a facade. And if they do exist and your son does end up in one, I would wonder about the general condition of such a place. Do the caretakers really care? Is the place nice and clean and warm with well rounded meals, and are they truly surrounded by support from doctors, nurses, and the general staff? Or will your son simply just be a number, one of many patients the doctor stops to see for 5 minutes, and then off to see the next one? For me, there was no question what I wanted for my son. I think of long term care facilities as perhaps, just a tiny step above prisons. Instead of prison guards, you have nurses. And of course, the nurses can make sure they take their meds. Other than that, not much of a difference. Either way, a desolate, sad existence.
Just be very adamant that he cannot come home to you and ask about your son getting on disability and getting benefits. A separate living arrangement may be more realistic and tangible than trying to find a long term care facility.
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I agree that the places available to someone with average resources are mostly pathetic. That said, if the situation reaches a point where your son cannot live with you, there are generally 1 or 2 that are passable, that will keep a roof over his head, fed, and hopefully safe and on meds. It is a better alternative than having him dropped off at a shelter or just living homeless.
My son has been in 3 different places and I looked at a few others. Of the places he was at:
the one that provided the best care wasn’t really appropriate for him - too large, too regimented, population was older;
one was very poorly managed, and my son was assaulted there, and his belongings destroyed;
one provided more intensive care, but not anything very therapeutic, was understaffed, and was much like a nursing home.
I looked at one that had fewer residents and was more homelike, but my son was not accepted there; I looked at 2 that scared the crap out of me.
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[quote=“Vallpen, post:25, topic:7046, full:true”]
I agree that the places available to someone with average resources are mostly pathetic. That said, if the situation reaches a point where your son cannot live with you, there are generally 1 or 2 that are passable, that will keep a roof over his head, fed, and hopefully safe and on meds. It is a better alternative than having him dropped off at a shelter or just living homeless.
@Vallpen, the whole mental health system and the process of releasing them after they’ve been admitted to the hospital (whether voluntary or involuntary), is so discouraging. It almost appears as though the easy part is getting them into the hospital ( and I’m being sarcastic because I know it’s not easy when they don’t agree to go in). But compared to the process of trying to facilitate a place for them to live after discharge is maddening. You would think there would be more “transitional” type facilities for those who can’t go back home, whether it be because of violence towards the caretaker or their destructive nature. My son was the latter. He was never violent towards me, but he destroyed a lot of valuable things and often left our front door wide open while he wandered the streets while I was at work. Thankfully I was never robbed, but his behavior still quite scary! And he started putting holes in walls, and destroyed many electronic items which were very costly to replace. I realized we could no longer live together. And it was a sad revelation. I wanted to be the one to help him, with his meds, him getting well, him trying to somehow lead a normal life. But it just wasn’t going to work in the same home.
He’s doing better on his own, keeps the place half descent, and he seems to appreciate more of his own things that he owns since he’s been on his own. I think In my sons case, he really appreciates his “own space”. But sometimes I feel like his isolation is just too extreme, and it kills me. I wonder if it bothers him as much as it bothers me.
@Vallpen, I visited a couple of these group homes while he was in the hospital and while they allowed him to stay longer in the hospital so I could find a place for him. As a last resort, it would have been a group home, had I not succeeded in finding an apt for him. I would just like to say these homes were less than desirable ( and that’s putting it mildly), as far as cleanliness, the size of the staff ( 1 or 2 people) watching over a group Home that consisted of prox 30-35 people (a lot of them looked like drug addicts and it reminded me of a halfway house for heroine addicts). Just awful. My son never did drugs and he never would have stayed, he would have ran away had he been forced to live there.
So the pressure was on me, to find a nice moderately priced studio apt (was there such a thing)?
I got lucky finding one, his entire SSI goes only for rent, and I still have to chip in for rent. He gets food stamps and I still have to chip in for food. I pay his utilities.
I need to be able to sleep at night, and if he would have had to be forced into one of these homes, I would have never slept. Also he’s a loner ( many sz people are), and not sure how he would have got along with the other residents. Most likely would have been assaulted like your son, or my son would have assaulted them.
So far the arrangement is working, but I worry about after I’m gone. Who will take over the finances on his behalf? I keep thinking he will improve as he gets older and will be a functioning stable 40 year old man! But it’s only a wish, if only it could come true!
Kaiser saved my grandsons life. Excellent psychiateist, finally got him on Clozapine while hospitalized. Better in the hosputal cause they can bring the level of Clozapine up faster. It was a miracke fof us.
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My son was also not able to live in an apartment. Because of his delusions and paranoia, he was destructive, and while the way people reacted to his odd behavior was probably discriminatory, it happened and was something we had to deal with.
His history of residence after moving back to the city I live in, after his dad could no longer manage his illness was:
Apartment1: tenant complaints; eviction based on filth and refusal to allow pest control avoided only because my son went to the hospital, and I agreed to terminate his residence there;
Apartment2: tenant complaints; destruction; eviction begin but not completed as my son was again in hospital and I agreed to terminate his residence;
Residental Facility1: large,regiment, and older population. My son was not happy there.
Apartment3: tenant complaints and destruction; eviction notice; back to hospital
Residential Facility2: poorly managed; meds were mismanaged, and my son’s illness was progressing; was assaulted and his own property destroyed.
Residential Facility3: A behavioral health unit in a nursing home. Staff was caring, but overworked, but they did manage meds well
Current living arrangement: a rental house that I own. His SSI funds go to pay the mortgage and a fraction of the utilities. All other needs are paid for by me. First year was terrible, much damage, and several hospital stays, but at least we didn’t have to worry about other tenants and the threat of eviction. Was started on Clozapine and has remained stable for 3 years.
I has set up a special needs trust, where, once I am gone, funds can be available while still protecting his financial benefits. A trustee has been identified. I am his guardian, and another guardian has been identified. (This will be re-evaluated as necessary.)
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@Vallpen, this is one of my biggest fears. That he will be evicted because of his strange, odd, destructive behaviors. And his neighbors already know there is something not right with him. So far, he has been good, no destructive behaviors, he just keeps to himself. But should he go into another bad episode, I don’t know what will happen. I don’t have rental property, and he can’t move in with me, and I can’t let him be homeless. I just pray he stays stabilized as best that he can.
I also want to look into the special needs trust. I’m far from rich, but it’s not small change either. And he has proven he absolutely cannot manage his finances, so yes I will need someone to manage it for him. I just hope that the amount of the special needs trust fund does not negate his SSI benefits.
You went thru hell and back, this is a life destroying disease. All lives.
@mbheart, regarding what @Vallpen was saying… that’s the whole purpose of the Special Needs Trust. It protects your son’s SSI, Medicaid, and any other benefits he is eligible for (ex. Food stamps, lower cost housing) from being removed due to him having too much money. All of the money your son inherits from you will go into the Trust, and someone will manage the Trust money to add to the quality of your son’s life, above and beyond what he’s already getting through the government.
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I didn’t have a rental property either, until I decided this was the only option that could possibly work for my son. But I understand this is also not an option possible for everyone.
A special needs trust is probably your best option. It takes a lawyer and some fees to set up, but then any money you leave for your son is managed by the trustee you select. It can be an individual or there are companies that provide trust management services.
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Thank you for the info. This eases my mind a little.
@Day-by-Day how does one open such an account? I’m assuming I’d have to hire a SSI attorney?
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@Vallpen, I’ve actually considered buying a small inexpensive home, just in case he is evicted. I can’t see him homeless nor can I envision him in one of those group homes. I do have the financial means to do this, but wanted to try him renting as an option first. If all else fails, I most likely will purchase another home for him.
But I know long term care facilities are hard to come by and I know in my heart that if he were to be placed in one of these places, he would just run away, and most likely be homeless.
Thank you @Day-by-Day and @Vallpen for the special needs trust fund info. I didn’t know such a thing existed.
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Hi
A Special Needs Trust is not an account. It’s a formal legal document, just as a Will is, but it costs more. You need an estate plan lawyer, not an SSI lawyer.
Our son’s Trust actually cost $1750, which I know sounds awful, but once it’s done, it’s done.
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My costs were about the same.
My 23 yo son is on my private insurance but also has medical assistance as long as he makes less than 16000/year. It’s not Medicaid though just welfare. His dr takes both . He would have to be declared disabled to get ssi or Medicaid and we had no luck going that route bc he can work
Oh, I will have to look into the special needs trust. I thought it would cost much more than $1750 so I didn’t even look at the possibility.
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@Day-by-Day Happy cake day!! ;)
Thanks, Hope. As a cake-lover, I certainly did enjoy seeing that little picture. I think I’ll get myself a real one today.
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