Family and Caregiver Schizophrenia Discussion Forum

Assisted living or group home

So is there anyone in the Tampa bay Florida area that has had any luck getting housing for an older patient in his 50s. The “system” caters to the younger people and it’s impossible to find him a living situation that’s affordable and will be beneficial to his well being.
At the moment he is living with me in his little converted shed on a farm. He can’t care for himself. He is like having an 8 year old living on his own. Does not bath. Lives on candy chips soda etc. is obese and diabetic on top of his psych issues. He is bipolar behavior with psychotic tendencies
He refuses to get involved in any social activities and just sitting in his shed all day and eating and hearing the voices is not a healthy situation
He is on mental disability and receives around $700 a month.

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Hello @Patricktyler . I understand your dilemma. I also live in the Tampa Bay area.

The behavior you are stating is all too common unfortunately with the severely mentally ill. You are kind to provide the shed for him to live in.

When my daughter was at her worst and unmedicated I tried to find housing outside of my home and failed. I eventually put an ad on Craigslist. One assisted living in Winterhaven, one psychiatrist and one guy looking for a girlfriend responded. The Winterhaven place would have taken her for $900 per month, but she wouldn’t go and wouldn’t stay on medicine. The patient had to agree to be there and be medicated.

At one point she had an offer of 18 months at the Boley Center to help her and she turned it down. They also required the patient to agree to be there and be medicated. That offer of a bed and rehab was located by a social worker at the hospital that held her for a Baker Act from the jail. There were 40 women on the waiting list ahead of her, but because she was actively in a psychiatric ward, she went to the top of the list.

A friend of mine has her son in an assisted living in Tampa Bay, but he went there before age 18. It is paid for by his Social Security Disability, and he gets $15 a month personal money out of his SSDI check, the rest goes to the facility.

Another friend of mine bought a home (cabin / shack) for his unmedicated brother 20 years ago far away in the Mid West so he couldn’t find his way back to his brother’s house in Tampa. The ill brother lived alone, with monthly money, until one day he walked off and no one ever heard from him again.

Most families I met through NAMI support their loved one at home.

I wish I had more helpful experiences to share with you.

I ended up remodeling my home so that I couldn’t hear as much my daughter’s nightly screaming at voices. I called the police when she got violent and after 5 Baker Acts, she eventually stayed on medicine and still lives (happily now) with me. Possibly you could have your person ex-parte Baker Acted through the court system for his inability to care for himself. Possibly he would get on meds and maybe a bed in assisted living somewhere. That is not a guaranteed outcome however, as 4 of 5 Baker Acts for my daughter, she was released with no where else to go, so I had to take her back in.

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@oldladyblue
You are one resourceful woman!

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Yeah that seems to be the problem. Everyplace is expensive I have a friend in st Pete who’s brother is in a group home. Costs all of his disability plus his sister pays an extra $1000 out of her pocket every month for him to stay.
He has been baker acted 3x last year. Comes out worse than when he went in :slightly_frowning_face:
I set up
All his meds every week in little baby food jars so I make sure he takes them and he is now getting the Invega injection every 3 weeks.
I was reading an article on this site regarding Avolition. And he is exactly like that. No drive or motivation to do anything. That why we hoped getting him out into a new place to be around people
May help. Are there any activities that he can go to with people like himself to get him out and stimulated in a positive way. His only joy in life is eating. He is almost 400#.

Your story offers hope for a loved one to eventually take medication…(I’m sure there is much, much more you have written or could write about that!)

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I see this a lot. On medication but still not much of a life. I always wonder…What does the doctor say about this? Are we supposed to accept status quo? How long has your loved one been on Invega shot? Is that something that was recently changed or added? I understand that no one wants to upset the apple cart, but maybe there is another medication that would work better??

Oh @Patricktyler I wish there were more places available to help loved ones with severe mental illness. The cost to run a home is high. One small place in St. Pete that only housed 6 men at a time had a yearly budget of over $370,000 per year and eventually closed as it lost money yearly. So the cost divided by 6 men was over $60,000 per year. I’ve attached an article I saved some time ago. St. Pete home a haven for men with mental illness. Now it's closing. There was/is a sort of a clubhouse for daily activities in St. Pete with limited membership for those with schizophrenia. It offered activities, classes, movies, outings, and just a place to hang out. I can’t remember the name (again my daughter wouldn’t sign up for it as she “didn’t have schizophrenia like the other people here” in her own words). I have no idea if it survived because of Covid. I will try and find the name and let you know.

Thank you @Hanginginthere . I am a researcher by nature, I like to find out facts and share them. That started when I was in grade school and had an insatiable need to read at the library (long before the internet) and my book reports at school were always a hit with the other students and the teachers. I now am addicted to the internet.

As far as eventually getting a loved one to take medicine @hope4us , yes, that was a battle. In short, it probably would never have happened for my daughter without several fateful steps: 0) my finding this site to educate myself, 1) an arrest on one of her rare excursions alone into town when she was yelling at an office building and dodging in and out of traffic. They might not have arrested her, except she tried to kick the policeman. 2) Pinellas County’s “Who’s In Jail” website where I found out she was in jail, 3) my “bravery” in going to court early the next morning to speak, 4) a judge who listened to me in court when I asked for his help to get her on medication 5) The judge Baker Acted her from the jail with a court order to be medicated, 6) The psychiatric facility contacting me after my blind fax “in case my daughter was there” to all 3 facilities near me asking them to put her specifically on the Haloperidol Dec shot which I knew worked from a prior Baker Act, and 7) my own “conniving” (for lack of a better word) to talk her into getting her shot monthly. We lucked out totally that her fate was decided by all of those steps above, as I do consider it a miracle the way things came together seemingly by chance.

It helped that I am very stubborn and wouldn’t give up trying to help her even though it had a terrible cost to me in my own physical, mental and financial health.

It all started because I had found this forum and the kind people on it through @hope 's thread on the unmedicated when it came up on a Google search I fortunately made How many of you have an unmedicated family member and what's happening today?. That is why I still come here regularly to try to help others. I have goose bumps right now thinking about how much of a miracle it was for all those steps to come together.

So, please, don’t give up hope and faith. I had all but disowned God before that fateful date in Dec 2018 that saved my daughter from the terror in her mind.

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I, too, feel like my son’s recovery (and his eventual actual understanding that he has an illness and fully embraces taking medication) is due to a lot of good fortune but certainly by my unwavering determination and effort, as well as financial resources. And to the prayers of many.
On the Clubhouse model, here is the link to find locations and see what Clubhouse offers (it is an excellent model for those who want to and are able to use it): https://clubhouse-intl.org/what-we-do/international-directory/
My experience of faith (in God): in the depth of our concern and despair, when we didn’t know if we would see our son alive again, I found peace in turning over the outcome to God. I knew that our son had a relationship with God, so eventual finality to life on earth has a greater joy beyond what I have (or our son has) at any given moment. God isn’t responsible for fairy tale endings in this life, but we have His assurance to give us all that we need to get through the trials of life. And yes, miracles do still happen.
@oldladyblue We are not done with work to help make life better for others…on this Forum and through other volunteer and advocacy work we might do. Thank you for your sharing and encouragement. It means so much.

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Sounds like a similar story to most of us., i wish my son would agree to housing. He’s non medicated and destroys stuff. I just can’t imagine living with him forever . We are 65 and want to enjoy ourselves.

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We caregivers who allow our ill loved ones to live at home are the people who took over when the State governments closed down most of the government paid-for mental hospitals that used to exist in the U.S. When I was 16 years old back in the 70’s, my mother, a registered nurse, worked at Massillon State Hospital in Ohio, what they would have called an asylum in the old movies, a psychiatric hospital . I dropped her off and picked her up there after work the days she let me use the family car instead of driving herself to work. One day she wasn’t waiting for me outside, so when I went inside, I had my first experience with the then-existing mental health network. It was shocking and scary to me. It was dark, dank and the place smelled like urine. Those who weren’t dangerous were allowed to walk around in their hospital gowns looking very very lost talking to themselves or not. And no one paid attention to me as I wandered around looking for my mother. I felt like I’d walked into a horror movie. Over the years the government shut down most of that type of “free” hospital, but nothing really took their place except for families having to care for their loved ones at home or wandering alone and psychotic in the world somehow making their way. Also, jails became homes to the mentally ill, my own county jail houses many who are sick but get caught doing some crime or other. I’ve sat in on court cases during my paralegal training and observed judges who wished there was some other place to send the ill person to for long term care.

It is so sad that those with such severe illnesses often get no care at all, or have no where to live. Everyone on this site who struggles to help someone afflicted is very brave in my opinion.

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I live in Massachusetts and there is nothing up here either. I used to be on the NAMI BD for the state for year, former Dir of Spec Ed. We have a 39 y.o. daughter with severe Bipolar 1 Disorder… psychosis.
America works on litigation. It was a major lawsuit that got all of the state hospitals closed with the campuses now being sold by the state to Devlopers for million dollar houses… no, the money doesn’t go to the Dept of Mental Health.
That lawsuit which effected the whole country started in MA
I honestly do believe that there needs to be a class action suit on the lack of housing and services for those with mental illness… The way out is saying they have to agree… There needs to be housing where they go whether they agree or not. Living at home should not be an option…unless family is capable and wants to provide that. At some point though we won’t be here and what will happen to our afflicted family members is cruel.
Not to mention the number of adults with autism with no where to go either…
This country has a crisis — and the solution is to just let them out onto the street.
This is so wrong on so many levels…

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Fortunately, some areas are starting to use ACT, Assertive Community Treatment. (Or AOT, which I think is tied to the judicial system following or instead of incarceration) I don’t know a lot about either of these things. But they are proving to be quite successful programs for getting a person to be treatment-compliant. For @Patricktyler , I suggest attending Family Support Group meetings of your local NAMI to see if others in your locality can provide some ideas. In some localities, the persons who attend those meetings may vary significantly from one meeting to the next, so don’t stop after one meeting, because you may come across someone else the next time with helpful advice.

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So does that nami place offer counseling for caretakers. My friend is gonna put me into a total mental breakdown with all the stress of trying to manage him. I’m going to have to seek counseling and anti anxiety meds because he is pushing me over the edge trying to help him. It is so frustrating. That’s why we are trying to get him into other housing. He is sucking the life out of me. Do any of you have the same issues. ??? How do you manage the well being of yourselves ?

NAMI is not counseling. It offers Family Support Groups led by people like you and me with lived experience of having a family member with a mental health condition, who NAMI has also trained to lead the group. NAMI also offers a Family to Family class in some locations that is highly educational, and I think, extremely helpful. The Family to Family class was my husband’s and my first exposure to NAMI and he will tell you that is the best thing we did at the time (our son was missing and homeless living out of a car in a far away metropolitan area and we didn’t know if we’d ever see him again). All NAMI programs are offered at no cost. Find the locations in your state (and many are currently on Zoom if you don’t find something local to you.) Home | NAMI: National Alliance on Mental Illness

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Thank you @SueML for your past service with NAMI and for your comments about lack of state hospitals and how it started in MA. Yes, it is very terrible that there are so few places for family members / caregivers to find suitable living for their loved ones in psychosis. I put a plan in place for continued care for my daughter when I pass. It was done free to me by a local lawyer. I went to him for help managing my daughter (schizophrenia) and husband (alcoholism) on the recommendation of a post on this site. It helped me to de-stress to get that little white binder put together with all the needed papers. It is the best plan for me, maybe not perfect, but better than no plan at all for sure.

@Patricktyler I totally understand what you mean by your friend’s psychosis “pushing me over the edge trying to help him” and “sucking the life out of me”. I so so so understand. I ended up with my own therapist, multiple doctor visits, tons of sleepless nights, crying in the dark alone, and those years of stress possibly led to my being diagnosed with breast cancer in June of this year (not life threatening). You must must must take care of yourself the best you can. The NAMI group in your area can provide classes and support that you definitely SHOULD check out. It is a group run by volunteers who have been in your shoes and maybe still are, so they know what it is like to care for a person with psychosis. @hope4us is offering you a lifeline, so please use the link she posted.

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Thank you for your responses… I was on the NAMI Bd of MASS for 8 yrs and involved locally. What disturbs me is that there really is not system. Mental health care has plummeted over the past 20 years and not improved. Just wish some law firm would pick this up and file class action lawsuits for abuse. We don’t treat animals like we are treating people now. We do have something set up with our lawyer but it makes me nervous. We have a list of people that can be asked to be trustees when we’re gone and I guess if that fails the local bank.
She’s very smart though and capable… so again we do feel better having this done but sick in that to get any decent help you have to pay. How many people have to pay to see Drs regularly around cancer — none… just seems to be MH. If you want someone good you pay. And there aren’t very many at that… which is sad… Thanks again and stay well

I do understand @SueML that mental health care is not up to the standards we would like to see. That is why caregivers try to navigate our loved ones to the best care we can find.

Directions for Living has funding so that those who need medicine only have to pay $15 per prescription, and the visits to psychiatrists and psychologists there are either free or low cost. After my daughter was released from the psychiatric hospital the last time, they referred her to Directions for Living and that is how we found it. She is well treated there for a very low cost. Her workplace provides health insurance to all who work there, but there is NO mental health coverage at all.

I am glad you have some future planning set up for your loved one. Making the best plan for the future when you are gone is all you can do. I hope the plan brings you peace of mind.

There are federal and state parity laws. You probably know more about this in your state, but for anyone else, I suggest contacting NAMI in the state where the person lives and ask about mental health parity, because it is possible an insurance company is in violation of the law if it does not offer mental health care at the same level as that for other medical conditions.

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Well @hope4us , I am going to have to ask NAMI in my county about the state parity laws. When I was going to NAMI, my daughter had no work provided health insurance, so I am unfamiliar with this. Thank you for posting about it.

On “parity”…Or Treatment Advocacy Center likely could help but I’ve never tried contacting them directly.