Absolutely! I don’t blame those caregivers that give up on their loved ones either, it’s a hard experience! I’ve been called every name and spat up so I’m still trying to learn a new language, seems like my loved one has also autism and everything else. I don’t trust my son to be by himself even in a hotel, in two places in this town he’s not welcome as far as hotels, low income housing much less! I’ve contemplated a supervised setting for him and so far no luck with that either.
Hi Sando, I know it’s way back in February that this conversation took place with tippy and I like your insights and approach to what is in front of each one of us in this forum; it’s almost the end of August and I’m pleading with the Lord also for strength for each one of us and our loved ones and try to find something to laugh about; at some point I was thinking the same as tippy: I should take the meds my son doesn’t want!!!
This is true re: the lack of mental health system. There is none for our loved ones it seems until something truly horrific happens. It seems jail or homelessness.
The book ‘No One Cares About Crazy People’ puts some very interesting history of our system into perspective. We used to have ‘Asylums’ - lots of them. SZ patients were simply put in and largely forgotten. Treatments were harsh, misguided, often cruel. But ‘out-of-sight, out-of-mind’ ruled.
Then personal pressure created political pressure and California (with Reagan’s prompting!) was the first to close the inpatient hospitals and force hundreds of thousands of SZ patients back on the streets. A big shot of Thorazine and a promise for the patient to self-comply to an outpatient, community health clinic, to continue improving.
Failed. For ALL the obvious reasons. Several changes and attempts to improve access, reimbursements, outcomes over the past several decades - but it still comes down to this: ‘SZ patients who have a loving family will likely improve. Those without support WILL BE HOMELESS OR INCARCERATED’.
We need focused resources to support these families and loved ones affected by SZ. If families had more help, they’d be less likely to give up and let another SZ patient join the cruel streets.
This is so true. Help the families and that will help the person with SZ. If I had unlimited resources I could make sure my son lived in good safe place where he wouldn’t bother neighbors, I could end my never ending fear of landlords kicking him out.
Sando- omg, this is textbook my situation. I couldn’t handle it. I drew the line at physically beating me, crashing cars, clogging up toilets and trying to break house. One time we just moved into our new house 5 years ago and she asked him to go to the laundry room and bring bleach to kitchen. Any ‘ask’ was generally meant with ‘you’re the worst person in the world expletive expletive expletive.’ So he brings the bleach upstairs with no lid and sloshed it all over the carpet on the stairs, boom, carpet ruined. I still can’t believe this is really happening. I do know that if she didn’t take him, instead of him being in jail, we both would have been in jail, or worse. My son just turned 22 and is starting clozapine from what I understand. Honestly needs to be in a group home, I still can’t understand why they don’t take us (people afflicted with a family member with SZ) more seriously. I know what you mean when mentioned you can kind of keep situation diffused with almost non stop talking to/counseling, listening, chatting about really weird topics… I simply can’t quit my job and do that stuff as I will go under and eventually have to retire. Your posts are so spot on for my situation.
The problem also is, let’s just say the clozapine works… After a day, a week, or a month, more likely a few days, son will stop taking it… Back to psych hospital/jail etc repeat process. I guess darkest fear and bottom line is that he will kill her. Would they do something then?
I relate to the damages in your new house carpet; here in our house has been punched walls, floor damages and broken windows, in other places where he’s been he had to be evicted for the same reason: clogged toilet with socks, food or the sink clogged with his hair when he cut it. This illness is everything and more.
I’d like to know how clozapine will work for your son since our loved one has been on so many different AP’s but clozapine.
It’s so frustrating! it seems like the Mental Health court doesn’t really help until our loved ones do something really stupid and they end up incarcerated; I’ve checked into having my son’s meds court ordered and I have not been able to succeed on that.
Yea, he has been on everything under the sun, nothing works. Clozapine? Well, will just say is suicidal and likely back in psych hospital now. ie its not working.
Also, the Ukraine gets $50,000,000,000 but mentally ill americans get 3-5 days in psych hospital and thrown into the street. What am I missing here?
Agreed!!! Prolixin injections were #2 most helpful. Every 2 weeks. Obviously critical if daily med adherence is lacking… We’d go back to that if he dropped clozapine.
All the APs have that side effect unfortunately; does your son takes it willingly? My son was taking them regularly, long time ago but with time he was just cheeking them and I don’t trust him after that, I just rather have him on the monthly injection, Invega can be administered every 3 months but we didn’t get to it yet; this last time he was doing well on the Abilify mantena but he stopped suddenly because he felt he didn’t need it anymore after only 6 months and very quickly he’s showing the positive symptoms. I remember once taking him to the ER and he had not slept for a few days so I asked the nurse to give him something, the doctor ordered for him Gedeon 10mg injection and it was like a night to day, unfortunately Gedeon is not available as a long release injection.
A friend’s son had a EK once, I asked her if it worked, she said the doctor thought it didn’t but she didn’t elaborate.
I have not left our son on the streets yet unless he decides to stay there, I think I’m doing my part by not letting him go homeless, I don’t blame others for doing what they have to do; in our case I have considered a group home but the waiting lists are so long and he doesn’t want to get interviewed so they don’t take him.
Sometimes we’re in the corner. Not easy.
Is there any resources to support the caregivers families in your area? None in here, there’s some but not for persons like our son, they want to help the ones who cooperate and participate. If that was the case I would not need help.
NAMI in Texas pretty good. But you have to grind to create a trusted support group of resources. Years in building….
He’s currently compliant. But. Has gone ‘off all meds’ at least 5 times. Typically the threat of being homeless and in two instances actually being homeless did the trick. One time in 14 degree weather. Snow. No phone. No wallet. Thousand miles away. We were zombies of fear as we waited… Finally sorted out. Only a few blurry days.
Sucky suck suck but he knows there’s a line. It’s all that has worked for us.
Sando, I’m glad you have reached some degree of getting the message across your son; with our own son I don’t even remember how many times he has stopped the meds, he was 19 when he had the first psychotic episode, he’s 49 now and even after all those many experiences he just doesn’t relate one event to the other. Here in IL some winters have really been harsh so he had frostbite in his hand and toes, he wasn’t homeless but he used to walk about 4 miles from the apartment he used to have to our house in the middle of the night, without proper protection for the elements; of all seasons the one I dread the most is Winter, I like it but just thinking about him with no phone, no money and no protection for the elements is worrisome.
Love wins! I just don’t have the heart to kick him out, I have a few friends whose sons have been found frozen and I just don’t want to have an awful regret. I really thank you for being in this forum and share your own experiences with us here.
We are being created for best and this is definitely transforming! I hope for a better tomorrow whenever it happens.
Believe it or not my son tried everything then September 2020 haldol. Old school meds - he says it’s the most quiet his brain has been.
He knows that he hears voices Wen not on meds. That is a gift