I am new to this forum although I am not new to this illness and I am struck by how similar many of your stories are to my own.
I wonder if any of you have advice about arranging long term housing for your loved one. What has and/or has not worked for you?
I live in California where the housing costs are very high but I understand that some people try to purchase a home or condo and place it (or will it to) a third party trust. Has anyone done this? Has it worked out?
My son (sza, 30 yo) is extremely disorganized and slovenly so he really couldn’t maintain a house without a lot of additional support, but perhaps a condo with weekly cleaning would work. I don’t know of any safe and comfortable group homes.
Please post if you have any suggestions or just to let me know what has worked for you?
Yes, we have done this. I could write a novel, but short answer is, it works until it doesn’t. We have a townhouse, held in trust for DD, parents as trustees. It was great for a number of years until she and the BF who lived with her both stopped meds, Covid happened (restricted our oversight, we live several hours away), and everything spiralled out of control. We had her hospitalized last month, and are in the process of evicting the now ex BF. This might take awhile, as he is refusing to vacate. I have applied for a court order, and if denied, we will consider selling.
Once he is gone, we will have to restore the property (much damage) and reassess how best to proceed in DD’s best interests. We also have to consider just how much we are able to subsidize financially and how much emotional labor we are able to supply. We aren’t getting any younger, and while we do have alternates to take over we really don’t want them to be handed a hot mess. I’m pretty sure that’s not what they signed up for!
It’s going to take time and money, and she may not appreciate it at all. Last time we spoke, she was adamant that he should stay, I hope she can reconsider once meds fully kick in. Ultimately, they could both end up homeless again, despite our best efforts. There’s no way the proceeds of a sale plus Disability shelter allowance will cover rent (maybe just, in today’s market, but definitely does not allow for inevitable increases) and the wait for social housing is years long.
Bottom line, proceed with caution! I am optimistic that this can still work, but it’s a pretty significant bump in the road. If your person is stable and med compliant, perhaps all they need is a place and a cleaning service. I wish you much luck in finding a solution that works for your family.
Thanks for responding. I can see that having a second person involved really complicates things and honestly not something I have considered.
My main concern is that my son not become homeless and as you say rents are less stable and subsidized/ support housing is very hard to get- although honestly I don’t really know much about the supportive housing options near me.
I think some people arrange a “board and care” - places where a live-in caregiver (or two) provides food and general housecleaning for 6 residents.
I don’t really have a plan - which is the problem. My son is med compliant right now but who knows what the future will bring.
I hope your DD has decided to stay on the meds post-hospitalization. I don’t know how anyone can care for someone with SZ/SZA without them.
Get Medicaid for your son nd then attempt to place him in a group home or long term care facility. The county mental health services should be able assist you in the process. Also, under Medicaid in Colorado, home based services for a person with a serious mental illness are up to 6 hours a day. If you purchase a condo for him make sure it is held under a special needs trust so that Medicaid does not collect the money from the sale of the condo after he dies for the care he previously received while alive. A lawyer that specializes in special needs trust is a good idea for direction in these matters.
It’s hard to come up with a plan until you’ve explored all the options! For us, the first thing off the table was having her live with us. No way, uh uh and not a chance, from her position as well as ours. Board and Care would never be acceptable to my severely anosognosic daughter, even if we could find and afford it. She absolutely does not believe that she is in need of any assistance. We had previously sent rent money, but she used it elsewhere and ended up homeless. I had a chance meeting with an acquaintance at just the time DD was being released to independence. She was ecstatic that her 11 (ELEVEN!!) years of advocacy had just found her son an appropriate subsidized home. She celebrated with a trip to Europe, cut short when she was diagnosed with cancer and died within months. The stress takes a toll. We were able to make the financial commitment, and made our decision. We’re now regrouping and again considering our options. We all continue to do the best we can with current resources.
Like you, our goal is and always has been ensuring that she has a home. I sometimes wonder how much homelessness factors into involuntary treatment. The only time DD was in hospital long enough for good stability was when she had no home to return to. She stepped down over several months, from locked ward, to more lax setting, to tertiary care group home, to on her own, but well supervised before independent living. When housed,no matter how sick they say she is, she is always released before she is really ready IMHO.
I have wondered this as well. One family, who was searching for their daughter in a park in Colorado known for a large homeless population, said that their daughter had left home after involuntary treatment. I can see how forcing our delusional and paranoid family members into treatment could result in them “escaping” to the streets.
Wow- what a sad story about your acquaintance. Is your DD collecting any disability? It seems like owning a townhome would be the best way to maximize disability because if one lives in subsidized housing then I believe they lose their SSI, am I right? I suppose that is a good trade, but I suppose it depends on the housing.
I have heard that in my area homelessness can factor into discharge timing. I was told that one should refuse to allow the loved one to return home because (presumably) that would lead to longer treatment or at least a different bar for what is deemed stabilized.
I have also heard that the hospital simply drops the patient off near a shelter.
I admit, I am concerned that she might make that choice, ‘if he goes, I go.’ I hope not, because there is nowhere to go but the street.
We are in Canada, and her consistent income comes from the Canada Pension Plan. She should also be on provincial disability, which is embarrassingly inadequate, and shamefully, even deducts the CPP. AFAIK, ex BF removed her from their joint disability benefits, and she cannot be approved as an individual as long as he lives there, whatever their actual relationship status. The home, held in trust, has no effect on her disability eligibility. I believe the shelter allowance portion can be put to utilities and other property expenses.
I am in a similar situation in that I am trying to plan for my adult son and where and how he will live. I don’t even know where to start. If anyone knows where to begin, please share. Thanks
We are dealing with a similar situation except our son is 52 and we, his parents, are in our 80s! We bought him a condo but, after many years of living there, his building is taking us to count to evict him. We didn’t realize that could happen but apparently it can. We have hired a lawyer but are really scared what will happen if they win in court. We’re terrified of his winding up homeless. He’s on depo Invega Sustenna with mixed results. Cleaning help didn’t work out because he either fired them or they quit. We are now cleaning his apartment on a weekly basis. We’ve been advised that the best course of action would be to buy some land and put up a small house or trailer. It’s overwhelming!
That is so hard!
I know that some symptoms make it hard to live with someone with SMI but a little compassion would be nice!
If he is evicted perhaps you could find an alternative- maybe the trailer isn’t a bad idea, although it depends on your situation obviously. Have you tried a call to social services in your county? Maybe attend your local NAMI family support for suggestions ? Does your son have a case manager? It is overwhelming. I really hope you can find some help!
Hi @maria1 . I went to see a family lawyer to sort out my daughter’s situation. We divided our home to have tenants who rent rooms in a back apartment. My daughter has a studio apartment. We (husband and I) live in the “main” (now much smaller) part of the house. The rent from the tenants pays for all of our house costs, so my home is essentially free to live in if the “rental business” continues. I set up a trust that will receive the house, have life insurance to fund the trust, and my son and my husband’s sister are the trustees. My daughter, per my will, is to live in the house until she dies, at which point the trust can be dissolved and my sons then own the house and keep it as a business, or sell it.
My son and I live in California as well, and he lives in a small group home (8 residents) which is called ‘independent living.’ The residents are responsible for taking their medications without supervision. The pharmacies deliver the medications to the independent living, so I am assured that my son has his. If you are interested in learning more, you can go to the webpage called - ILA (Independent Living Association). You will find a list of independent living homes, including photos. The cost is reasonable as most residents receive SSI or SSDI (disability benefits from Social Security Administration). The independent living where my son lives has one staff member who lives at the facility. The staff member cleans the facility and prepares two meals per day (lunch and dinner). He also oversees the residents in case there are any problems. I prefer independent living facilities which have 24 hour staff. My son has a tendency to isolate if left alone, and the independent living provides socialization for him as well.
Thank you for your response. Curious… when you pass will your house go in your daughters name, your sons, or does it remain in the trusts name?
I am almost in your same situation . My parents ( mainly my father) took care of my schizophrenic
brother for most of his schizophrenic life ( since age 22) He is now 57. They also assisted him with rent when he was working a long time ago ( in his 20’s and early 30’s) Once he was unable to work they continued to pay his rent so he did not end up living with them. My brother was evicted once from his apartment because he accidentally did not put out his cigarette and threw it in the lobby trash can.
My dad then found another apartment for him. My dad died 4 years ago. My mom has dementia. She is 86 now. I was left with the responsibility for both my mom and my brother. things got a lot worse once my dad died. My brother’s apartment was always filthy , but now it rose to new levels of filth
including toilets full of poop. I had to have someone go there everyday to avoid total chaos.
My brother is now in a nursing home. This was not planned. It was a pure miracle. He was hospitalized after a car hit him. He was not hurt badly but they found a bad infection on his foot. So he was admitted for IV antibiotics. Then they recommended rehab for physical therapy. He agreed to go!
Then I spoke with social services and told them my mom was too elderly and demented to continue taking care of my brother and she herself needed care. After 2 months in rehab they found him a long term care bed, Now he has been there for 3 months. It is the best thing that has ever happened to both him and me!
I know that this may not be helpful, because your son is not in the same situation, but I would start looking into nursing homes. Do you have any other children?
So happy both you and your brother can now have better lives. Being able to not have to constantly worry about him must be a great relief. Unfortunately, our son would never agree to any long-term residential placement. We found a residential treatment center out of state where the average stay is 6-9 months. It’s very costly but if they could work at finding more effective meds and improve his self-care skills we would do it. We have a daughter in Canada and she dreads the day he will be her responsibility. Hope you can now enjoy your life more and not have to totally devote yourself to your mother.
I really feel for you and your daughter because this was me and my parents prior to my dads death. I always dreaded the day my parents would be gone or unable to care for my brother any longer. If my brother did not have the series of events ( hit by a car , taken to hospital , finding an infection, admitted to hospital , agreeing to go to rehab) I would be in the same miserable situation I was in for who knows how many more years! It was truly miraculous what happened. My goal was to do everything to keep my brother in the apartment he lived in so that he would never end up at my moms house . This was very hard because he did nothing . He picked up garbage and threw it all over the place. He did not flush the toilet in the last 1.5 years ! Can you imagine that ! I had to pay someone to go there daily just to flush the toilet and clean up his daily mess? How much longer could this go on for. I had a nervous breakdown when my dad died . It was overwhelming the reality of what I had to deal with. I live in Connecticut and my mom and brother live in NY.
The one thing I did learn is that you cannot plan for this disease . After a while I just learned to live in the present and not become paralyzed by the future which I had no control over . But one thing I can tell you as a sibling is that I was an still am going to put my life first and not let my brothers life ruin mine . That is hard to say and I did not have to deal with the reality of caring for him for as long as I expected . But in the end your daughter is going to have to deal with this as well. Living in another country will be hard . But maybe easier for her to let go if it becomes too difficult. I know this is a hard reality to face as a parent . But it is unfair to have to ruin your life because you have to take care of a person with schizophrenia . You have very little control over them. That is essentially the biggest obstacle. I hope I have not depressed you too much. You are doing the best you can as a parent . I am thankful everyday that my parents shielded me from all my brothers horrible life since he was diagnosed at 22. I am also so thankful for the miracle that just happened . I see my brother monthly at the nursing home . He is totally fine ! I would have never believed that he could be ok in a nursing home but he is! Good Luck!
I don’t think land and a trailer is necessary. Although it does provide a lot of privacy and benefits. It’s so sad that we have to try to seclude them which isn’t healthy also. Maybe a singe family home not in a community with a HOA. I’m looking for a place now. No condos or townhouses with HOAs who can sue and complain. I see most of us are trying to secure them housing. I feel like it’s discrimination to evict someone with an illness. I hope he can keep his house. You guys are amazing for buying him a place to live!
When my son was partially stabilized after a hospitalization, we told him that we would find him his own apartment only if he agreed to first go through a private residential treatment program. Like you said, it was incredibly expensive but we were pretty desperate for help. I don’t know if there could have been another way that didn’t cost so much, but the program turned out to be a huge help because the doctors there finally realized the extent of his psychosis and started him on clozapine. The program was for Dual Diagnosis and included substantial CBT/DBT therapy and addiction treatment. Once he transitioned to his own apartment, COVID hit and he spent almost all his time at home anyway. Now he is back living with us but still talks about wanting his own place. I worry most about after I am gone. Shelter is a fundamental need for every person and for many disabled it is simply not something they are capable of finding for themselves. It is so disgraceful in my mind that our wealthy country doesn’t seem to care to take care of its most vulnerable citizens. The SSI payment is a sick joke. This is why it is up to family, as expressed clearly in “Nobody cares about Crazy People.” I know we are all dealing with the same problem, so I hope you will excuse the rant!