I have to begin thinking about long term solutions for my son who has had schizophrenia for 13 years, He is 33 and I am 70. He is not really capable of living on his own and not able to manage money really well. I have set up a trust fund for after I die and there will be a fund manager who will give him an ‘allowance’, which for a normal person would be sufficient to live decently in an apartment. But he is not normal, He has been on SSDI and Medicare, not eligible for Medicaid. Does anyone know if there are homes; or half-way houses or what options exist? Where do non-criminally schizophrenic people live if not in jail or with family? Any suggestions will be greatly appreciated. His condition deteriorates each year, and he has tried almost every medication under the sun (which has probably wrecked his brain). He is currently on 20 mg. olanzipane . Thank you
I’m in the same boat – i.e. older parents of a 30-something son with Sz. There may be a half-way house option, but I’m not aware of it. I’m thinking before we pass there needs to be a trial-run of whatever the living arrangement is going to be. By the time we are close to 80 the trial run should have been started.
I am in late 60 s with almost 30 year old son with schizoeffective. He is currently in jail because he went off all meds for 6 months and deteriorated even more than I thought possible and ended up attacking my husband with a pipe and stealing nonstop. I know he will eventually be out of jail and he will have no where to live. He functions at a low level, unable to drive or clean or cook or manage money, also has addiction issues with alcohol and weed. Psychotic and delusional most of the time, even when he was on meds for 9 years. I worry all the time about his future and where he will live. I am way too drained and scared to live with him. I have been helping him non stop for over a decade. A halfway house or group home would be great, but I have not found any, and my son may not agree to live in one and go homeless.
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I think I am interested in what Medicaid might pay for long term care. My understanding is that this may be a possible route and if anyone knows details, please share
There may be assisted living facilities that would take Medicare
Maybe look those up in your area , will your son have anyone else to look after him finances Dr. Appointments grocery shopping etc.
I’m looking into getting my sibling a legal guardianship that is not me or my elderly father,
“a state appointed guardianship”
That may be helpful to look up in your state .
The guardianship would be in charge of housing ,meds ,finances etc.etc.
This is very difficult to think about sending you strength .
I worry about my sibling not being able to do a group setting also
Sometimes he can but other times in the past he hasn’t been able to and escaped the facilities once he set a small fire in a trash can to get discharged .
He ended up sharing some of the other patients were out to get him and he couldn’t stay there anymore
This is a most difficult task when we just want a place our loved ones can be Safe
Medicare provides 180 lifetime days in a mental health facility; I do not think Medicaid has that limitation, but I know you have to protect assets. Hopefully someone on here has more solid information
Hopefully ,
I’ve found the older threads here helpful sometimes, by using the search engine tool.
Hope you find the information you are looking for
The only thing that I know, is that it is possible for people with brain disorders to live in nursing homes or as they are also called “skilled nursing facilities” longterm on Medicaid. Medicaid is for the elderly and the disabled. There are necessary qualifiers - I don’t know what they are, you will have to do a lot of research to find out, your state’s aging and disability resource center may be the place to start.
Does your son not qualify for Medicaid due to his disability being too high?
What seems to be a common story is that our family members live with an elderly parent until the parent dies. Often they do participate enough in care that they make it possible for the senior to continue living in their own home.
The aging forums are full of people wanting to evict their mentally disabled sibling after the parent passes. Our family members have rights in these situation but often they don’t know and don’t have any legal representation.
On the NAMI forum years ago, people talked about some parent self organized groups that left assets in the group’s trust and the other parents oversaw the distribution of those assets and kept in contact with the adult child after their parents died.
If you could find one of those groups and find out how they are structured, you could set one up. As you know, there are plenty of highly motivated people who would like to participate.
Thank you! I originally read:
What seems to be a common story is that our family members live with an elderly parent until the parent dies. Often they do participate enough in care that they make it possible for the senior to continue living in their own home.
I read it as: “Often they do not participate enough in care…”
I think my brain was thinking that since they have SZ, they are too self-focused to participate in care. I’m glad that is not commonly the experience! Co-housing is cheaper and I think the loneliness of our LO living alone is often detrimental to their mental health.
I agree strongly.
The good news is that in all of the long term studies, our family members show improvement/lightening of symptoms 25ish years after onset. There was no way my son could have been capable of such a situation in his 30’s, in his early 40’s, that was a different story.
Our family members that are making it possible for an elderly parent to live at home are often unappreciated by their siblings. On the aging forums, the siblings get excited about profiting from selling the house and are eager to toss out their sibling to make the house sale possible.
Yes, this can be a heavy burden for us older folks with loved ones dealing with a mental health condition. From what I understand you have no other children or close relatives/friends that would come alongside your son? Support from family and friends is important but not always possible.
Some of your questions depend on which state you are residing in and what resources are available. I have a cousin in WI who lives in a long term care faciIity that works for her with both her parents and two sisters gone she has contact with a nephew who lives in another state. I believe he is her durable POA.
In AZ there are a number of non-profit places available for residency. Of course, they have certain regulations as well as any other state run facility.
I would start with NAMI in your area. Check with their resource people and their suggestions of other places you can investigate. As much as possible it would be good to include your son in this process. Have you heard of the LEAP method by Dr. Amador?
I know when I had to help our daughter who lived in IL at the time of her second psychosis NAMI resource person was a great help and support. I would suggest the possibility of the police department in your area to be aware of your son’s situation unless they are already know. Some states provide a special police force just to deal with mental health conditions.
A coach friend told me once: don’t look at ‘What you can NOT do’ but ‘What you can do!’ There is no perfect answer but for me as I trust God He gently leads me in this area.
Also it would be good for us to pray and encourage the new presidential administration coming into office this month to be more proactive in caring for our loved ones dealing with a mental illness.
Thank you for posting this question and for all the great replies. I am in the same situation. My daughter is in her 20s. I worked with an attorney to create a Special Needs Trust. So any money I place in the trust will not count against Medicare, etc…
My hope is that I can find an assisted care facility that can take care of her after I die. I have not had much luck finding a facility. I may just have to find a good nursing home. I think a nursing home may provided more stability then a co-housing situation. But I’d love to hear more thoughts on this problem many of us face.
I have had some success using this web search phrase:
mental health residential facilities for schizophrenia
ARTA may be able to help find a facility. (I have not used them.)
Lastly, the only medication that has really helped my daughter has been clozapine.
Hi thank you. I’ll respond randomly to some of the posts and I appreciate the discussion.
I am retired and we oscillate between Oklahoma and Florida at the moment. I need to look into NAMI (?) a bit more. My initial impression is they cater to things like depression and stress and anxiety but not so much schizophrenia. ( I could be way off).
It’s got to be so lonely to be schizophrenic and not really have a support group
With regards to special needs trust, you may want to see if Medicaid would consider that an asset; I know there are ways to protect assets from Medicaid, but it has to be done correctly and timely.
I think financially, a long-term care facility may be the right or only answer (besides jail or homelessness) but it’s really unaffordable and probably needs Medicaid help
My son has begun taking olanzipane (sp) and it seems to help some. Little worried about clozapine because it would be really difficult for him to get weekly blood tests