My son is 15 years of age, schizophrenic, and he has terribly erratic behavior (even with treatment) to the point where he’s not safe unless he’s supervised 24/7. When he’s at home, our world revolves around his care, to the point that we’re barely managing to meet the basic needs of his siblings. It’s not sustainable, and it’s not the life we want for our family. I know there must be others in our situation who need housing and more support for a severely mentally ill loved one – support that’s either incredibly expensive or simply unavailable. I’ve often thought that a more supervised community setting for my son (once he turns 18) that keeps him safe, allows him to find purpose through relating to others with similar struggles or even opportunities for some kind of meaningful work (farm work? etc.) might be a great solution. Does anyone know if programs like this exist for more longterm support? If not, I’d love to throw out feelers to see if others might be interested in finding ways to create such a community. I just know I can’t be the only burnt out caregiver looking to find solutions and release some of the caregiving burden that’s far too much to manage in the home setting.
Have you looked into what your county offers by way of residential programs? If they have anything you’d probably have to get on a waiting list.
My son has stabilized with age (35) and on AP meds for at least the last 5 years, and lithium since around 18 or so, which was stopped after he developed CKD. 20 years is a long time to tough it out, but it might take that. Also, have you looked at I Am Not Sick, I Don’t Need Help! How to Help Someone Accept Treatment
It’s been a while since I’ve looked into this. I remember reading about Clubhouses.
This one says:
If you haven’t been here in a while, you might not realize that, after 19 years of operating as the San Antonio Clubhouse, we’ve rebranded as form communities .
It’s been a while since I don’t post anything; but today I was thinking about the dream of having community base housing for schizophrenia patients like my son, he’s 42 years old, diagnosed with SZ when he was 25 and I can easily write a book about all the things we experience. Many of these experiences are not good to remember, I was about to lost him when he took off on a train to Arizona and got very ill and homeless once he didn’t have any money to spend, anyway, is a long story. He’s living in a nice foster home; but still he’s free to go out during the day, which is good in some part; but at the same time is not, yesterday they took him to the Hospital, because he goes out to walk on 107 degrees, besides I don’t think the medicine is taking is doing good enough, so I will love to have places like the Senior Citizens, where they can live, take his meds and have activities during the day, including therapy, just like the way they are when they are in the hospital. I do feel guilty sometimes for not having him with me again; but I’ve done it before and doesn’t work at all. It feels like I’m always living with some kind of guilt. We need these kind of communities for our loved ones, they deserve it
From what I’ve seen here @MomtoJ , the absolute best time to try and get a loved one into a home is while they are under 18. A close friend of mine’s grandson is still being cared for in a home 10 years later, he was 16 when his troubles began. If he hadn’t been gotten in before 18, it might not have been possible to get him placed in this county. His mother and grandmother just couldn’t care for him, and he kept getting into police trouble or involuntary holds. His disability pays for the home. At one point he was made to leave due to physically threatening another housemate, but it was a temporary bar, and he got back in.
We had a clubhouse in town when my daughter was first ill. From what I saw there were never enough staff on hand, and the club members were turned away if they acted out too badly. It was closed down during Covid and never reopened. I also tried to find live-in places for my daughter (in her early 30’s) and only one time was a live in bed available over a 3 year period. She had a social worker during one of her hospital stays that placed her, it would never have happened if it wasn’t from hospital to home done by the social worker straight out of involuntary hold. She never went, she refused to go. I was heartbroken at the time as I was looking forward to the respite from caregiving. It’s a complicated road to find help.
I recommend that you read the book by Loren Mosher. I think it’s called Soteria House. A psychiatrist in the 1970’s started a movement which created safe communities for those suffering with their mental health. It started in California but now I believe there are similar places in Vermont. The places offer a great deal more freedoms than the Hospitals do and I think are probably a great deal more humane, although I have no personal experience. I found the book moving and transformative. You can also find an article about Soteria House on the Mad in America website. I wish you well
I have a 25 year old pretty stable, but fragile, daughter. She has a job but it is nowhere near enough to support her. But it’s too much to collect a check any more.
My lottery fantasy has been to partner with some agency to build supported living for people like her who fall through the cracks. She has a social life, drives, has interests, but still needs daily emotional support. A development of one-bedroom apartments with a kitchen and staff person on duty would be ideal. She could connect with other tenants and be pretty independent. And rent would be 25%-30% of whatever income she has.
Our experience with a clubhouse was not good. It drove my daughter crazy that they didnt say who was staff and who was a client. She wanted to know who she could talk to.
The best facility in this area is the Boley Center. That is where my daughter was eligible for a bed after her hospitalization thanks to fast work by a social worker at the hospital. She would have been living with other women with mental health issues in a supervised environment that helps them to learn to work/interact with others. I thought it would have been perfect, but my daughter wouldn’t go because she thought it would be like the clubhouse and the clubhouse was NOT a good fit for her.
It is VERY very true that more housing opportunities are needed all over the country. Here the waiting list is now closed. They are almost always full, and a social worker’s magic is the only way a person gets a bed.
I live in Kansas and we need these desperately. I am with you all the way. Just haven’t gotten very far in the journey. Spent some time researching grants for rural development where homes can be purchased or built but the staff and all the other expenses would have to come from the tenents disability and social security or their families. As far as a work program or organized activities, this is a non-negotiable. My son falls apart with nothing to do to keep his mind active and not in bondage to the voices he hears non-stop. The same business model that they have for developmentally disabled (formerly referred to as retarded) where homes are provided by the state and placement and supervision of jobs is what’s needed for the chronically mentally ill population. Especially for the caregivers that are seniors and their health, energy, and finances are dwindling. That’s me.
It sounds like we have similar thought processes about all of this. I think what I’m coming to recognize is that funding is always going to be the primary challenge. Sadly, many people don’t seem to understand how much of a societal problem ignoring the mentally ill really is, and when it comes to voting for policies and programs which support the most vulnerable amongst us, the mentally ill are seen as a drain on resources. What I envision and hope to someday work towards developing would be a type of non-profit self-sustaining community that provides goods, services, and amenities that benefit the local public and community members. So basically creating stable housing, but also businesses in this community that offer preferred employment to residents in the community who are functional enough to work, with profits from these businesses generating revenue to help sustain the community and other residents who are less functional, have fewer resources, and for those who need more supervised care. So for instance, building a community that has an agricultural component, maybe restaurants, entertainment options like movie theaters, shopping, etc. I feel a community like this anywhere would be a huge quality of life booster for local residents living outside of the community, while also creating a safe space for mentally ill residents where they can live more independent lives, have a sense of community, and be cared for in a way that alleviates the strain on family members. It would be a massive undertaking to build something like this, but I’m convinced it would just require the right group of people coming together to make something like this possible.
I’m with you 100%. There’s a site close to me that a movie theater, housing apts, restaurants, and other retail businesses was to be developed but the developer has backed out with half the construction on the plan in it’s first phase. I know there is a suit pending, but it would be so great for this community you speak about, including for my schizophrenic son. We need to get together a list of those who respond to wanting to help with this and where they are from. Maybe even put a post out on the NAMI site to see if anyone has already done this successfully. I know there have been commercial ventures that built on the East Coast and as far west as St. Louis, housing for schizophrenics. They are always full and they do not have organized activities or help place in jobs and monitor them.
I personally think the problem is cost of medical staff required to run housing for those with medical issues. Since schizophrenia is a medical condition it requires different administration than non-medical situations like a homeless shelter.
I worked at a boarding school ultimately closed in New Mexico because one student was developmentally disabled. Investigating local authorities were shocked that the school was without appropriate medical staff. He was NOT there for medical treatment, but for schooling, however, the school was shut down.
Another boarding facility in Tennessee specifically for unmedicated mentally ill that my son worked at was shut down for not having proper medical staff. It was not treating anyone, not handing out medicine, but providing housing. The executives were arrested and went to jail for trying to help provide a solution, but didn’t understand the legal implications of even non-medical housing for those with medical conditions.
Also, I have a 70 year old friend in Massachusetts who was evicted and ended up homeless because her roommate wanted her out and his girlfriend in. She was kicked out of two homeless shelters as she was a diabetic and no one could medically supervise her or store her insulin. She experienced a round-robin circle from shelter to hospital to rehab to shelter to hospital to rehab until a bed was found in an assisted living facility that took medicare. (All were full for months with no beds available.)
I believe the general lack of care for the long term mentally ill started decades ago when state run mental hospitals were shut down and “community care” was supposed to take over. The reality of TRUE community care is like a mine-field of rules, and the level of community care needed was never truly in existence. The family was ultimately the government’s solution: close the state run mental hospitals and send them home to family.
My mother worked as an Registered Nurse in Massillon State Hospital (for mentally ill) in Ohio when I was a teen. I saw the appalling conditions there. But, there was NEVER enough staff and my mother was very unhappy working there.
Yes, better solutions should exist, it begins with legally figuring out how to navigate the medical, HIPPA, finance laws, and TONS of money. The state governments cut out state hospitals because they were so expensive to run, and the staff hated the low conditions, I’m sure, looking back on it now. My mother came home crying many days as it was overwhelming to her for low nurses wages. Less stressful hospital jobs existed for more money.
Helping home caregivers to survive the terrible demands of helping their loved ones with episodes of psychosis was never really figured out.Thus this site, NAMI and the few communities that truly have community care are worth their weight in GOLD.