Been a few years since Ive posted pretty rough right now

We’ve had a rough few months and I’m trying to stay hopeful.

My son was sort of stable for a few years but for the last couple of years things have been getting worse. He was diagnosed with Paranoid Schizophrenia in Nov of 2008. After a couple of initial hospitalizations he was living independently close by until summer of 2022. Hes had some runs in with the law for vandalism related to his disease he spray painted hate speech anti immigrant things on a house.

His housing situation got steadily worse due to his unwillingness to tell the landlord about a broken toilet ,windows and roof. Last Spring in late April my wife had to do an IVC as his behavior became more erratic and threatening things seemed maybe a little better after this discharge but who knows. We were fortunate to be able to get him new housing in a nearby town. We moved him into a 1100 square foot house in an ok neighborhood. Unfortunately his illness/alcohol/drug comorbidity got worse.

He had been under the care of a local ACT team for years but the transition to the new location/jurisdiction didn’t go well. Not sure how much that mattered though as the ACT team care at this point was basically centered around him getting Adderall which has been a big issue . The Dr basically told us that they were still giving it to him as a carrot to stay in the program which I suppose is a valid technique but he wasn’t taking it as prescribed (he’d get two days at a time) and wasn’t taking the anti psychotic meds from what I could tell. You could pretty much plan on abuse/erratic behavior about two hours after the act team visit. Its also a constant need for more and more money although all we have is his ssi.

In early Sept of 2022 his grandmother died pretty suddenly of Covid. This stressor really accelerated his de compensation. As his rep payee I was getting most of the verbal and emotional abuse. As things escalated I had to do an IVC. He was hospitalized for about two weeks but no real good followup happened partly due to his actions but also because we were so busy with funeral and settling the affairs of his grandmother. We couldn’t have him as part of the memorial services as his erratic and reckless behavior (destroying property, death threats, verbal abuse , alcoholism) was off the charts.

After his discharge they had him on respiridone and depacote and a new diagnosis of Schizoaffective .
We did get him to one follow up appointment and the Psych doc told us the level of care he needed exceeded what the clinic offered. We think he went through a months supply in two weeks and was really manic its pretty crazy as who abuses respiridone?

Things got worse from there and resulted in another IVC this time after another approx two weeks he was discharged on a Tuesday and they had him on Invega sustenna injection ( which I had told Dr’s during the first hospitalization would be best). He was discharged with a months supply of Depacote again with followup care with the outpatient clinic doc.

Four days later we learned the house he was in had caught fire and he was in the hospital. Thank god he had no serious injuries but the home was considered a total loss. Toxicology screens revealed no excessive drugs or alcohol so we’re not sure exactly what happened though ER doc did tell us some street Fentanyl drugs are not detectable through screening. I assumed that he had taken a ton of Depacote but they said screening for that revealed a “therapeutic” level our son says he was rolling joints of “legal” CBD and that embers caught the very old (1960’s) and very flammable couch on fire. A couch which I had urged him we should replace but he insisted on it as it had belonged to his grandmother.

We had a renters insurance policy for him so he was in a hotel for ten days after the hospital stay after the fire after being home with us for about a week. We also manged to get another shot in him. I’m pretty surprised he wasn’t thrown out as he had a boom box that he plays lots of disturbing music on but he then moved back in with us. Both of these initial stays with us often had me in my bedroom door locked with a can of MACE close by as his threatening abusive behavior continued often accompanied by this horrible loud music and the ongoing battle to turn it down. After about a week or so of trying to maintain he was drinking again but taking meds. It was about this time that he starting taking some old diabetes medicine he found that was for his grandfather called Glyburide we can only surmise he had been taking that because the label said it can cause dizziness. After a few days of exhausting behavior things got quiet and we assumed he was asleep thank god. My wife heard some noise from his bedroom and found him in the tub unconscious going into convulsions it was absolutely terrifying. Fortunately I showed my wife the pill bottle and she quickly got me to get handfuls of sugar into his mouth. He had overdosed on this medication and was basically in a self induced diabetic coma.
By the time EMTs arrived he was conscious and not convulsing.

Once again he was transferred to the Psych ward after the hospital stay for the overdose for a few days before being discharged and is now back on oral resperidone which we sort of control and depacote he advised Dr’s he didn’t want injectable anymore.

Hes now back home with us and back to drinking but taking meds. I’m extremely stressed out with panic attacks and depression sometimes the whole situation seems hopeless. His lack of accountability is distressing. Its a constant battle between trying to be sympathetic to his illness and wanting him to be accountable for his actions he wont really admit to what happened with the overdose or acknowledge that he almost died. This has been another awful holiday season. Our home is like living on an unsupervised psych ward hoping the patient will follow the rules.

Trying to take it day by day and am going to start AL Anon meetings. It looks like it will be six months before the insurance process gets the house rebuilt. The drinking usually leads to abusive behavior with no regard to boundaries and hate speech. Its really disturbing as I’m also concerned about his level of self care. Even when the house is rebuilt can he care for himself ? After both IVC/hospitalizations I spent weeks cleaning out his home it was filthy with beer cans and cigarettes scattered about ect… Hes now 37 years old his future is a constant worry.

As my sister was Schizophrenic I have past trauma that all this continues to trigger, As a parent the only thing I was afraid of that I couldn’t protect my kids from was this illness and it happened.

Ive tried to tell him we’re in the consequences phase of his behavior but I don’t know if this message gets through. He wont really discuss it but I have to believe he thinks about whats happened to him or does he ?
I know an IVC commitment is trauma for him and myself but will he ever link his behavior to these hospitalizations does he really think I’m having him “arrested” for nothing?

I’m going to start Al Anon to help with dealing with the alcohol part of things I don’t want to enable his behaviors and need to avoid anger and name calling but am I ready/able to throw him out of the house ? The tough love idea sounds good but how do you do that to someone who is not only alcoholic but schizophrenic?

I’m sure many reading this have been through similar experiences and understand. We’ve done Family to Family NAMI classes and I have a therapist who is very helpful and Im getting ready to go back on depression anxiety med’s but I spent a lot of the holiday in my room just trying to avoid confrontations or escalations . Guess this is what they mean about your life becoming unmanageable.

Its been about 14 years now with this illness and I can tell its taking its toll on me and whats left of our family. We’ll keep going as best we can.

Best wishes to everyone else who is struggling I know its not easy.

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This is very hard. I can only imagine what you and wife are going through. I am sure you know, you can press charges againts him for destroing property and assault. Maybe trying a doctor especialized on addictions would work. It is difficult to address schizo with the addiction going on. It is ok if you have to throw your adult son out of the house, and put an order to keep him away from your home. You have done a lot and there is no point on keeping doing the same and expect something different. Your health is also important. Quite likely he will become homeless. He may get in trouble with the law and then get treatment that way. His mental health possibly will get worse but he is not making any progress now. But do not feel bad if you kick him out. You have done all you possibly can.

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Hi my son is 22 he is very abusive now and threatening. Last year was awful with him. Three hospitalization and in jail twice. I am very worried for his future. I can no longer live with him. My plan is to buy him a home and pay it off so he is never homeless. This has even been a challenge with this housing market. Like you I’m not sure how well he well do on his own but there aren’t any options left. I will do my best to send groceries and someone to clean on occasion. I’m very depressed just as you are. I don’t know where to start to get help for me. I got more life insurance for him and planning his estate to ensure when I’m gone he will be financially okay. I hope you are in a position to do this also. His fathers side of the family had MI history. Trust me if I knew I would have NEVER taken the chance of having him. I hope in the future schizophrenia can be eradicated through gene testing during pregnancy and women can have to choice to abort just like Down’s syndrome. No one should live with that illness. There are some doing well and others not so much. You’re doing the best you can and a lot for him. In my prayers……

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Hi. I’m a sibling of a brother now in his sixties who has schizophrenia. I saw my parents go though a lot and I’ve been part of much of it for decades. These massive flare-ups as you describe now with your son are so overwhelming, and yet you’ve detailed it quite clearly…so you are more level-headed than one would imagine a person could be. Amazing.

No wonder you are stressed and depressed. You are experiencing multiple traumatic events and changes. And I’m sure many on this forum can relate to the push-me, pull-me of emotions: do you worry about your son because of the fire, or feel terrified due to the death threats? Angry–or loving? You sound like you’re beyond all that even and are just defaulting to being responsible, numb, maybe realizing you can’t do more…Probably many on this forum can relate to all that.

I don’t think schizophrenia “always wins” but there are stages that the sufferers get in where it seems you as a family member can’t do much beyond what you’ve already done, which in your case is considerable. (My brother left home at age 19, was gone for three years. He just wanted to be away from family and all that was familiar. Could not be stopped…)

Sending my best wishes for peace and that you get through this.

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@urnotalone
Your story is brutal. I wonder one thing. How does your son have money to buy alcohol/drugs?
My brother has schizophrenia. My parents also put him in an apartment for many years ( Age 26 -
57) My dad had to go there weekly to make sure there was no damage and that the garbage was taken out and the toilet or sink was not plugged up. There were also times when due to cigarette smoking there was excessive amounts of smoke in the apartment and once a small fire that was put out quickly. There was always something. My parents could not tolerate having him live in their house.

Getting your son a place to live is important, so that you do not have to be tortured by him living with you. it seems that even with his own place while you are both alive, it will still be a struggle to keep him in it without constant intervention to “fix” things that get destroyed.

My brighter was NEVER able to maintain his apartment in any semblance of order or cleanliness . As they age this does not get better. So leaving him a place to live after you are no longer alive should not be your priority . Your son will not be able to live on his own and manage an apartment without your help.
My dad died 4 years ago. My mom has dementia. This was the end of the line for my brother. His parents could no longer help him. If it was not for me, intervening and making sure he did not get evicted from his apartment, he would have been evicted! I would never have been able to keep this up for the rest of his life. That was not a solution. We are only 2 years apart. There would be a limit to how much I could help him. I would not ruin my life for his. After my dad died he got much worse. His behavior was erratic and he stopped flushing the toilet. My life became a nightmare.
In my opinion, this disease is brutal and someone is going to have to pay the price. It should not be you and your wife. Your lives need to come first because there will continue to be rocky times and most things will be out of your control.
My parents had to deal with my brother since he was diagnosed at 22. My dad would never have been able to deal with the rapid deterioration in my brothers behavior and overall worsening of his disease.
My dad lived to age 87 and my parents did not have it as bad as you describe with your son.
there has to be a limit to how much your lives are ruined. You cannot be expected to be super human.

You will come to a point where you may have no choice but to throw him out. I understand how difficult this can be for parents. I would bet that a large portion of homeless people have schizophrenia.
I got lucky with my brother. He was admitted to the hospital for a bacterial infection, then was recommended to go to a rehab facility for physical therapy after hospitalization ( the infection was on his foot) Once in rehab I contacted social workers and spent the next 2 months detailing his life and how my demented mom could no longer take care of him. They eventually found him a bed in a nursing home! he has been there for 8 months now and it is the best thing that has ever happened to him and more importantly me!
He is doing well there and he takes meds regularly. He is 57 years old.

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Thanks to all of you for your thoughtful reply’s. That’s why we’re all here to share each others experiences and help each other. This forum is like having a journal . Once you write things down it takes away the power the experiences and feelings have or at least some of it. We had a few quiet days and will keep going. I really like chimain’s statement that schizophrenia “doesnt always win.” Just trying to take it one day at a time and appreciate the small peaceful moments that go with the rough patches.

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Recently I have come to believe that what we call schizophrenia, a psychotic state of mind is a cry for help. It’s a breakdown in communication, something in need of expression that has yet to find words. People who suffer are in need of someone to talk to and to be with. A good relationship may inspire confidence in one’s own positivity

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Doesn’t the ACT team take care of his meds?
My son had to take the i jection, because he would go off his oral meds.
Through the ACT they have someone see him every week and goes for therapy every week, and shot once a month.
What a difference! But he doesn’t drink
Feel for you…Been there many times.

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My prayers are with you and your family, and all of us who are struggling to care for our loved ones who aren’t really themselves anymore… I’m glad to hear you’re going to al-anon, and getting back to treating your own depression and anxiety. Some of the best advice I ever got was just a reiteration of the flight attendant instructions: “In the event oxygen will be necessary, please put on your own mask before assisting others.” We literally can’t help if we burn ourselves out and don’t care for our own well-being.
Your son doesn’t deserve these illnesses. You and your wife did nothing wrong and don’t deserve the hardship and heartbreak that you’re experiencing. No one “deserves” this. Some times really bad things happen. All we have is each other (and prayer, for those with a faith life - not trying to be preachy but it’s a HUGE source of comfort and reassurance for me).
Your son is not himself, and addiction makes that a thousand times worse. May he find himself again one day!

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You came to the right place! Welcome back.

Hmmm! I think I’ve gone through all what you described but probably longer; I’ve gone through the F2F three times, am I a slow learner? Most likely. Our son started to have SMI when he was exactly 19 yo, he’s 49 right now; he’s been IVC at least 3 times, many hospitalizations, I lost track of how many times. He’s been on his ‘own’ on the low income housing also a few times but each time he had to vacate the apartments for the same reason your son had to leave: damages in his apartments! He used to asked to spend the night at a hotel just for pleasure but he didn’t sleep, didn’t take a shower there just the gladness of being out of the house I think but after he wanted to stay a month at a hotel right after he was discharged from the hospital and to avoid his meds he broke a window after being there only a week and kicked the toilet so the damages right there amounted to $1,000. I don’t let him stay at any hotel anymore. He is not a smoker or drinker but his brain doesn’t work well and he doesn’t have the ability to foresee consequences for some decisions taken in a moment of anger or just danger; yes, I’ve had those moments of frustration especially when he refers to relatives in a despicable tone, it looks like he wants only his way and in his perception everyone: doctors, nurses, police, all are corrupt, his brother and sisters are this or that. I’ve read the book ‘I’m not Sick, I Don’t Need Help’ and it helps but lately what it helps me most is to watch Teepa Snow, she’s brilliant at the details of behavior of persons with dementia, her examples are very specific and I like the approach she’s teaching to family caregivers and personal working on that challenging field; there’s many other doctors trying to help caregivers, the task is not easy and SMI is not for ‘sissies’; at this point I don’t want to throw out my son yet, if anything I’d check into supervised housing; I have looked into it but every time I find this or that wall. In one of the NAMI classes we learned that it’s helpful to sort out priorities by degree of urgency for safety; from what I have learned it really helps to not react and try to stay calm as much as possible, of course cautious and safe and not poke ‘the bear’; it’s also helpful to know our own triggers; I’m not telling you what to do or not to do because I know what it is to be afraid, upset and annoyed, however I don’t think they themselves want the mental health challenges they have; people with dementia have almost the same behavior: they don’t believe they have a mental health issue: anosognosia; they can be aggressive, sometimes they don’t take the meds, they have paranoia, hallucinations, they hear things, smell things and they think don’t need help! those videos are most helpful for me.
Just like you, we had a few years our son was taking his meds and he was stable for a time, stopped taking the meds and the cycle repeats again.

Wishing you the best to you and your son. I hope you find the help your son needs, not necessarily having him homeless.

We’ve had a hard few years and I’m trying to stay hopeful as well.
May the New Year’s bring renewed energy, peace, hope, overall be at least healthy.

Take care.

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I’m so sorry for all you are going through. My son is 38 and I’ve had similar experiences, without the addictions. That sounds tough.
I finally quit being my sons fiduciary this year. Transferred it to a professional fiduciary. It wasn’t worth the turmoil it caused between us. My son has been classified as homeless since he walked away from his room and board. There is an organization called Telecare that took over finding places for him to stay. He can’t stay by himself anywhere and he’s never been able to live by himself and take care of a place without us coming over and cleaning up after him. We won’t do that anymore, we’re too old. He’s in the hospital right now, has been conserved by the county for not taking his meds and will probably go to a hospital for awhile until he gets better.
It sounds like your family has been doing all you could to keep your son independent which is really difficult to do. There might be more resources available in your area that could help you. Getting the fiduciary task off my plate really helped.
Take care and I hope he gets better. Text me if you need an ear. I’ve been doing this since my son was 21.

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I’m in a similar situation with my sister. She lives with my parents and has made their lives hell. After experiencing her meltdowns over the years, I have set boundaries and try to keep my distance which is obviously easier for a sibling to do than a parent. But we had another big blow last year…

My mom was diagnosed with stage 4 cancer and I don’t think she has a lot of time left. I’m very close to my mom and it’s breaking my heart that she has to live however long she has left in that kind of environment, not to mention that I can’t visit her and spend quality time with her since my sister lives with them. I’m a huge trigger for my sister and she even assaulted me during Christmas because I wouldn’t give her my glasses off my face (I’m practically blind without them so I wasn’t going to trust her with them). My poor mom is exhausted from treatment and is enduring all of the terrible symptoms of chemo and other drugs. My poor dad is 72 and trying to care for my mom but it’s all obviously exhausting. They keep feeding the beast by allowing her to drink and smoke as much as she wants, and that’s always been frustrating, but I know she becomes violent and destructive if you try to stop her.

I wish she could get out of my parent’s home but I don’t think she could live alone. She won’t take her meds and has been off of them for 6mos now. It’s all such a mess.

I’m sorry to hear about your son. It’s a terrible disease that no one deserves to suffer through, directly or indirectly. I hope you get some relief and can enjoy your life again.

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Thanks for posting I can totally relate to your comments. All I can offer is get yourself help in whatever why you can therapy, friends ,meds it will help or at least that’s been my experience. Hang in there

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Dear urnotalone, I see a few replies to your post. I have not checked lately this forum as we get things that take priority with our loved ones.
Our situation is very similar to yours, except my son was diagnosed first with squizoaffective disorder and after years of stop taking the meds every 3-2 years for the last 30 years he has now a paranoid schizophrenia, it might be even dementia. He’ll turn 50 in a few months. We’ve been through the same problem: being on ‘his own’ in low income housing a few times, clean apartments in nice areas but he’d ended up being evicted for damages in his apartments. For the last 6 years he’s been living with us with periods of going unmedicated, of course in trouble with the law because he has being aggressive and that lands him incarcerated before he has to be sent to IVC for a few months; has he learned to stay on his meds? No. He was discharged from the State Hospital about 2 years ago and you’d think he was going to stay on the monthly shots which was the Abilify but NO, same argument: it makes me sick, I get headaches! Well, last October we forced him one shot after 4 months of not taking it but I had to call 911 on him to be taken to the hospital because he was really tormented, and angry probably; they started him on the Invega 3 mg, he couldn’t have 6mg since he had the Abilify in his system 2-3 days before; we’re at square one again since he hasn’t accepted an increase of Invega dosage. I voiced out my desire to get him on Clozapine but a few times their opinion has been ‘he has to be willing to take it’! Ha!
Sundowning is at night: yelling obscenities, farther from reality, making messes with spitting here and there, throwing out food, abusive behavior that doesn’t offend me anymore because I know is the illness taking over but really uncomfortable for the lewdness and loquacity of the verbiage.

Regarding money: when he’s medicated he’s frugal, unmedicated he even throws away the money.

It’s a hard journey!

It’s getting harder to keep him on his meds.

You posted more than a month ago. I hope that by now your son is doing better and that you have better days.

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My heart.

I don’t have anything but best wishes that I hope your mother was/is given what medications she needs to cope with Stage IV. Aside from my brother’s own mental health issues with SZ, I have friends who I have helped while their parents were going through chemo. It was rough. Of all the things that can happen, SZ in one family member on top of cancer and everything else is a hard pill to swallow.

I’ve been dealing with that myself (not the Cancer but the MI with other people’s medical needs problems). Suffice to say family has several VERY ill people who cannot have my brother around for their own immunocompromised safety (he refuses any and all vaccinations and will remove their medical equipment/not wash hands properly when entering the house. Other than that, their household rules are pretty normal.) My father had a heart attack that while “relatively” minor has slowed him in ways that he never hoped to experience and has absolutely contributed to our (re: my and my family’s) push to have my brother in a form of separate housing for the disabled/mentally ill. While he isn’t old enough to fit into a nursing home environment, he is not someone I can care for ON TOP OF everyone else. My mother has BP with schizoaffective tendencies and has remained stable mostly via me getting her into psychological care. She admitted herself of her own volition to outpatient care facility after my brother experienced his own major breaks. She can feel when she’s slipping or at least tells/questions whether or not what she sees/feels/hears is real. Her lacking insight that she is ill is also NOT an issue thankfully. While getting into out patient care for her was rough, it’s nothing compared to being admitted (which she had been years earlier.)

At one point she went missing in the dead of winter during an acute period. the ER wouldn’t hold her and it was one of the rare cases that she was ill but because they had no beds, BUT for some reason they wouldn’t at least hold her there. Long story short, she got out of the house and went walk about, found later by a member of the local S&R team very cold and was zipped right to whatever MI facility had an open bed at the time. The hospital in a major bit of ass coverage wrote off ALL of her hospital bill in exchange for a failure to complete a civil case against them. Hospitalization has been necessary a few times in my mother’s case but because she’s more aware of what constitutes Sx of a “break” for her, she’s very on the ball about getting an appointment scheduled before things get worse. Likewise the people who hold her POA during any of the times she needed care were familiar with her wishes. (Tx, hospitals, even down to specific psychiatrists she preferred.)
Fortunately she has been stable, has held down a well paying job, and is asymptomatic with minor adjustment to her meds. The same cannot be said for my brother. (Denies illness, fixed delusions that are dangerous to others and can be violent and or a medical crisis with infectious disease with his name on it waiting to happen.)
My parents let him live with them for years but this is not going to work long term. The only reason they HAVE let him stay, despite all of his destructive tendencies is money.

The cost of any care facility for people with SZ is usually to the tune of 6k-10k a MONTH. My family would dream about having enough money to make that possible but unfortunately we are where we are. There are no free/subsidized programs built for the mentally ill to have housing and care guaranteed otherwise in our area. Repairing the house is mostly, cheaper than trying to rent him a place OR getting him into a care facility. The work is ongoing but hopefully, he will be permanently made a ward of the state or something to the effect of a Guardian Ad Litem with the right strings pulled. In the catch-22 of all the awfulness, I feel guilty for wanting to absolve myself of his care but at the same time, I have other life goals (mostly related to not dying in poverty) that can’t happen unless the care support comes from someone else besides me or my parents.
I’m not asking to be a kazillionaire by the time I retire but I want a career where I can put money in the bank and have enough to live when I start drawing a retirement. The uptick in people living in vans at advanced ages, while certainly A solution to retirement living and care, is a shame upon this country. Much like our treatment of the mentally ill. The promise of yester-year where the old can afford food, medication, housing, and some form of respite and direct action by the government and the local community for help has gone the way of the dodo.

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Ugh, that all sounds so heavy. Just one MI family member is a lot, I can’t imagine multiple combined with other illnesses in the house. I know the guilty feeling well. I think it will always be there and shows you’re a truly caring, kind person. It still sucks. Try not to let it take up too much space, though, because you deserve a fulfilling, joyful, life. Your mental health is just as important.

Things got worse with my sister. She was arrested for assaulting my parents about a month ago and has been in jail this whole time because she refuses to talk to anyone, even the court-appointed lawyer. It’s impossible to get any information or insight on how to navigate the situation. We’re in rural Texas which is also void of helpful places/resources for MI cases. The way this country handles the elderly and MI people is a sick joke.

Anyway, keep your head up. Allow yourself the space and time for your life and career goals because that’s what will help keep you afloat amid the chaos. You have my empathy :mending_heart:

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Feel sorry for you, after reading all your going through.
Been there, minus the alcohol. Mike also has ACT team, who comes now every two weeks, because he is at that point. Doing good, gets once a month shot.
But worry what will happen when they are no longer required?? He blames the shot on his side effects, which is a common way of thinking for them.

I’m sure Alanon may help…

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You have a heart of gold, and a great desire to help, but you should also remember that you have a duty to yourself to keep yourself well and happy. If caring for your son is leading to hurting your own self-care too badly, you must choose yourself first.

My daughter just spoke to me today of one of her trips to a local shelter during her illness. She has been on a monthly Haldol injection since the start of 2019 and has a new life now. Her psychiatrist would not take her off of the injection and allow her onto pills once we all knew how much the injection helped.

Remember, you did not cause your sons illness, and perhaps you can never help him beat it. Maybe it is time to ask him to leave your home. Homelessness made my daughter appreciate me more the next time she came back to me.