Hello, I am new to this group and grateful to find you. I have a 28 year old son who lives with me and I am very concerned about his future after I am gone. There doesn’t seem to be any long term solutions to this concern and I am sure many of you share that same concern. I would like to explore possible solutions to this problem, but I certainly don’t want to reinvent the wheel. Has anyone done any research into this particular issue? If so I would appreciate the opportunity to discuss what you have learned and further the discussion into action. Thank you and I look forward to hearing from you.
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Hey man, I’m sorry to hear about your son. I know how you must feel. All I could personally recommend is making sure some government agencies know. Maybe get him a list of resources like the ADA who can help him find housing, get groceries, and what not. Program it all in his phone and put something in his wallet. Let him know who to call or 211 for help.
Hope everything works out!
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I have the same worry about my daughter who lives with me. She’s only 22, but I don’t think she’ll ever be capable of living independently, at least not without a whole lot of help. I haven’t been able to find any solution for housing for her. Every place I’ve looked into requires that the person be compliant with a treatment plan, but she has anosognosia and refuses treatment of any kind. Not to mention the prohibitive cost. Hopefully it will be many years before we (her parents) are gone, but still this is my biggest concern—what will happen to her without us. Any inheritance she receives will go into a special needs trust, and the trustee will manage that money, but this doesn’t solve the problem of housing. I would love to have a plan in place but I don’t know what to do.
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Sigh. There really are very few places for those with severe mental illness. My friend just made her son homeless for 3 months, by refusing to take him back after Baker Acting him from her apartment. She is 72. He is 38. He got into a church run place (nicknamed “Tent City” and actually did OK there, but they have a time limit on temp housing). Then she let him come stay for a night and now he won’t leave her apartment again. He keeps giving all his disability money away every month to “girlfriends” on the internet who promise to marry him. She is going to have one of her sons be trustee of her estate and pay the ill son as he needs money, but it won’t be enough to cover housing. There is a large homeless community here, many who are mentally ill. They do learn to get along somehow. It is so disheartening. My husband’s cousin lives in an “under a bridge” community in Oakland, CA. So it happens all over the US.
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I completely understand and relate to all of your concerns. I failed to mention that I also have an older brother who has a son who is 49 years old and suffers from schizophrenia. My brother and his wife are In their mid to late 70’s and their son lives with them. They also share the same worries and concerns. I see this problem and hear about it all the time. This country has neglected the mentally ill and the politicians do absolutely nothing about it. I would like to look into starting an organization, possibly a non profit that focuses on the adult, mentally ill community. Ideally, this organization would create safe, affordable places for them to live and work on a permanent basis. My thought is that the residents of the safe place could and would provide goods and services to help pay for the day to day operations of the safe place including their room, board and treatment. I will keep you posted and please let me know if anybody has any thoughts about something like this. Thank you for sharing.
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There is an organization similar to what you’re describing, called Fairweather Lodge, in San Antonio, Texas. They provide permanent supportive housing for people with mental illness. It wouldn’t work for my daughter because they require medication compliance, but you could look into it for your son if he’s medication compliant and if Texas is close enough to you. If not, maybe you could take some ideas from Fairweather Lodge when starting your own organization. They do require a monthly fee but it is a somewhat reduced cost, I think something in the neighborhood of $500. I imagine that funding for these types of places will always be the biggest hurdle. Please continue to update us if you do start an organization—I’d be very interested.
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Ok thank you for that information. My son is medication compliant, but that has just happened over the last couple of years. He was very much rebellious and not compliant, but that changed for whatever reason. We are in the DFW area so San Antonio is definitely within our boundaries. I will look into Fairweather Lodge for the short term and for informational purposes for the long term. I am committed to pursuing this mission to try and make a positive difference in this very much neglected sphere. It is so nice to have a forum like this to talk to others in the same predicament and to share knowledge, experiences and ideas. Thank you again and I will be in touch.
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I’m in Austin and would be interested in joining you or helping you with your mission.
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Ok great, thank you so much. I’ll be in touch.
The most successful place I know that provides housing and care in my area (Tampa Bay) is The Boley Centers. https://boleycenters.org/ I tried to get my daughter in there, but she refused. It is almost always full with a long waiting list for those needing a home and care. The people I spoke to who worked/lived there seemed happy with the place. It would be a good model for a new foundation if you were to start one.
Also, Pinellas Hope, (https://pinellashope) known by its nickname “Tent City” has a good reputation for providing help and housing up to three months. A friend of mine with a son with schizophrenia was just living there the last three months when she tried to force him out on his own after his last hospitalization (she is 72 now, he is in his late 30s).
Those two places seem to have a good workable system.
Vincent House, which provides mostly day care for those with severe mental illness, was started by a couple with a daughter with schizophrenia many years ago. It is going to break ground soon for a six apartment building for their members who are in danger of becoming homeless. Pinellas Park affordable housing to be built for Vincent House members
That was the first organization to attempt to help me and my daughter with a place for her to go to during the day, but again, she didn’t want to participate and it was a bit far for us to get to.
Just to give you some ideas.
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This is a great topic since many (most?) of us have the same worry. The physical parts are housing and financial. The life-skills part would be the same as all the things we do such as shopping, bill-paying, insurance, etc.
Life skills requires some training, which might start with writing down everything we have to do to maintain a household.
Separate housing, if it is a good thing, would be expensive if it means two households, so we are co-housing for now. I say, “if it is a good thing”, because I have my doubts since our loved one would be lonely, which might lead to trouble.
But at some point, close to the end, provisions need to be made for their continued housing.
Financial could be anything ranging from self-funded (ABLE account or inherited IRA) to SSI. This is really long-range planning.
And then it depends on the level of recovery of the person and how able they are to live independently.
75% of people with SZ recover enough to stay out of a hospital. 50% can live independently and 25% can be independent but need support. I think that “support” part is what we are worried about after we’re gone.
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You are exactly right on all points. Let’s all stay in contact, continue to share and support. Thank you all and have a good weekend.
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I have also had this concern from day one. Where will my son live when I am gone. I have purchased a small single family home a 2/1. A condo would have been much more affordable but he is non compliant and I was concerned a HOA would kick him out. My son is 24. I plan to work my little ass off to pay it off. He has a trust set up as well. I loaded up on life insurance for him so if something happens to me he can have a chance with some money. I have an administrator for the trust and a set amount he will get monthly. This is so challenging and very costly. I’m grateful to God that he allowed me to have the ability to buy him a place so he will never be homeless.
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Good for you for planning ahead and taking action. My son is 28 and was also non-compliant when he was 24. He has had many traumatic experiences over the last 4 years including homelessness and incarceration, which, in hindsight, may have been a blessing. He is now compliant and willingly takes his medications daily. The one med that we believe is the difference maker is clozapine, which is extremely difficult to have prescribed, but truly seems to be a real positive difference maker. You all are probably familiar with clozapine and your loved ones may already be taking clozapine, but, if not, I highly encourage you to research it and pursue that option. I will share in another email an article about clozapine which is enlightening.
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Found the article and included it in my previous email. Let me know if you are unable to open it.
Thank you so much for the information. I will be trying to get him on Clozaril next. I wish they had a injectable version. I have read so many positive things about this medication. I hope and pray he gains some insight and takes the pills. I am very glad your son is doing well!
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Thank you and when go to your provider/doctor, just go armed with as much knowledge and information as possible to argue your case about prescribing clozapine to your son because you will more than likely get pushback. They normally do not want to prescribe clozapine so you need to be informed, persistent and insistent. I will keep you and your son in my prayers.
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I feel a connection with your journey as my daughter is 23 and is not aware of her illness.
She won’t take meds any more and is hardly speaking again. Back in her room .
Leaving her in this world without me scares the hell out of me too… stay strong , we are fighting the long fight 
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My daughter barely speaks to me and goes to great lengths to avoid me. It breaks my heart. She spends most of her time in her room with the door locked. She doesn’t come out to eat except sometimes in the middle of the night while my husband & I are asleep. She eats very little overall and strange combinations of food—her eating habits are bizarre and she’s gotten too thin. I just can’t believe this is going to be her life. She’s only 22. I don’t even know why I’m posting, but I guess it just helps me to feel like I have a community of people who understand. Thank you and best wishes to you all.
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Yes, my daughter is the same, I walk past her door and just want to open it and sit beside her and chat a while. I lost my daughter along time ago I feel, even though we are in the same house. she barely says any words. We communicate by text mostly, which is heartbreaking. She has no friends at all, this kills me. My family just don’t understand the illness, I have just started reading - *I am not sick , I don’t need help. A powerful read.
I live in Tasmania, our mental health system is not the best - she does not even know the severity of her illness and denies having schizophrenia. I just can’t imagine how what she goes through in her daily thoughts . So young, this is forever now 
I am grateful to find this forum and chat with families going through this horrific disease.
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