Hello, my son has schitzoaffective disorder with bipolar and anxiety and depression and on, and on. It is so very hard to live with him. I know he is suffering, but he tells his father and I we are holding him back, cuz we don’t want him to be happy. He tells us we are the sick ones for doing this to him. So much blame he puts on us. I am tired! He has been in and out of soooo many treatment centers. He is on 11 different meds for his disease. My oldest son doesn’t want to come home to visit because of him and I don’t blame him. This disease rips families apart. My husband and I can’t agree on moving my son out. Honestly, nothing is affordable right now, but I don’t want to keep living like this. I try to avoid going home as much as possible. I wish there was someplace that he can go and someone else is watching out for him. The one place we found was so expensive. She wanted to rent him a room which he would share with someone else for 3000 a month, she would make his meals and dole his meds and that was it. I can’t afford that! What to do?
I feel everything you are saying. Does your community mental health offer any guidance on group homes in your area? Usually those are affordable if your son is disability or Medicaid. Also the NAMI family support group in your area may have some helpful resources. I go to my local NAMI family support group meeting almost every week (as schedule allows) and those fellow family members have been very, very helpful as a lot of them have navigated all of these issues as well. Take care.
I hear you. We got my son an apartment which we are paying for until we get disability. Have you applied for that? It takes several months to get assigned but can help eventually. I am also finding that there are programs where he can get free services (like internet) for example. I’ve also found a program that can help him with housecleaning and other items like appointment reminders. It takes a while to find these and get them up and running. I figure, we aren’t going to be here forever to help him so best to try to get him living on his own.
Where do u live and how old is he? I wonder , here in idaho u can be a " house" and take care of othersa and be paid by state…in was considering as my son 25 needs a friend…i wonder if can try thrse things ir even hooking up at meeting with others so they can socialize and understand together…so sad when always alone and isolated…my son hard too sometimes and harder to see suffering…they all say these things as hard to accept the blane and resposibility when they cant do it…im alone , not sure if thats harder or same…hard to trust places…independent living place?
I have tried using NAMI and I did not receive the help I was hoping for. I was given numbers for nursing homes!! I need to check back with them to see if they are open again as everything was shut down due to COVID. I am thinking that I will need to talk to others that are in my area and what they have done. Thank you for your reply
I to am hoping that once we get him on disability, some more options can be open for him and his living arrangements. I filed the disability paperwork last year (May) and have only now heard a response. Due to COVID, they are backed up is what I was told. Unfortunately, I had already enlisted the help of an attorney the DAY before I was contacted from SSA!! I don’t know where you live, but our housing costs in South Florida have exploded! They are asking ridiculous amounts of rent for dumps! So I really need some assistance for that, but I understand that is all backed up too. GRRRRRRRR!
My son is 26 and we live in S Fla. He knows he should be going to meetings and so far I can only get him to 1. It looks like a nice group of mixed ages and a lot around his age. He is so socially awkward that he does not know and does not try to talk to anybody. I think he likes this group cuz its so big and he can hide in the crowd. It pretty much is the only time he gets out of his room.
Tippy: thank you for sharing. I have been where you are and it broke my heart.
I made the decision to get my son an apartment and I moved him in. It was 3 miles from my house, but after I moved now it’s is about 10 miles from my home. At first it was a nightmare - he is a dual diagnosis schitzophenic and alcoholic- he fell off the wagon stopped his meds and almost died. My spicy sense went off and I found him face down 6 times the legal limit of booze. He was in the ICU and I told the ER he was suicidal so they kept him-2 weeks then he went to rehab. I agreed to return his apartment keys if he agreed to meds etc.
this was a turning point- he says these meds are the best he has ever had. He works 40 hours pays rent etc.
still not perfect but no longer blames me for everything as if he has mice or no food it’s on him.
You have the right to a life a home that provides solace for you and the rest of your family.
Thank YOU for sharing your story. I keep hoping for some changes to happen and its so frustrating that it hasn’t happened yet. When I hear stories like yours that I can relate to, it gives me hope that it can happen. I am just getting tired of waiting. I really, really want him out of my house. The blame, the dirty looks he gives me, he makes me feel so uncomfortable. Is your son able to dose out his meds the way he is supposed to? My son is on so many 13!! Its hard for ME to get them in his pill box right.
My son was diagnosed after college at 24, he is now 32. He has been thru 5 different meds and now on haldol he says this is the best his head has been. Getting him into a safe but cheap apartment has saved my sanity- and allowed him to feel his consequences. I think his near death experiences could only happen with him in his own place. I have had to cover the costs when he was in rehab or looking for work - . There is a huge risk in this approach and I know. I could have lost him several times but he is alive working driving etc. still a different life than I ever imagined but his life .
Jeannet,
I am glad your son is better and working, would you mind sharing the meds that your son is currenlty Taking?
Thanks.
Tippy,
I understand your concern and your desire for peace in your home and you have the right to.
in my case, I did everything I can to keep my son with me because when he gets so sick he would travel to a different city and becomes homeless on street. I would rather have him in my home than be homeless and at the risk of someone harming him. it is my choice.
I have been through a lot with him in the past 6 years and he is still not stable enough to be on his own but he is currently taking a monthly injection and a mood stabilizer and anti-anxiety med and I see some improvements,
I did apply to be his guardian like 5 years ago and I was able to get him on disability and he is on Medicaid and medicare. My son has been through numerous hospitalization in the past 6 years, it was was almost impossible to convince him to take a pill several years ago and as soon as he is discharged from any Hospital, he would stop taking his meds, this is why I put him on Monthly injection recently.
Maybe you can become your son’s guardian and force him into meds Like monthly injections. it is worth a try!!
Praying for you and your family.
He has been through 5 different meds. Now he is in haldol- which is an old drug ie first gen drug which has been a game changer. The problem is trial and error … which each needs to go thru…
He has been through 5 and for the past 18 months haldol. The issue is trial and error of each as each person responds differently. Good luck and keep in touch.
I love the diversity of opinions, we can choose the decision we’ll take and I’m sure we give a deep thought on the taken action even if our loved ones blame us we learned not to take it personally, it’s the illness taking over; after so many years on this uncomfortable journey we also have our son living with us at the present time; he’s had a few low income apartments of which he’s had been evicted for damages in each one and it’s been expensive!!! Any situation that takes you out of the comfort zone is unpleasant, medication helps and work it’s just that one of the main trait of sz is anosognosia, lack of insight; there’s no connection between their symptoms, different behavior and their getting into trouble with the fact that medication helps them to be the person we knew before the onset of the illness, sometimes their baseline will be as before but with time there’s a new person, a different person.
I’ve been my son’s legal guardian for almost 30 years and I have a say about his treatment but according to the judge I can’t force him, this is where it gets frustrating since he doesn’t take pills on his own and he has to have the monthly injection but the judge isn’t supportive on this but we’ve left to navigate on our own. 
How did you succeed in puting your son on the injection?
Our loved one has been on it for periods of time, he feels better and he determines that he doesn’t want it any longer, it’s a cycle that has been repeated for so many years and so many times
I was also looking to answer Tippy as well, there’s so many similarities: going to hospital (on 2019 alone 9 times at the hospital!) back on meds and as soon as he’s discharged stop taking them! He’s been on the injection for the past 5 months and I started to hear the tune “I don’t want the Abilify”!
We try to stay hopeful.
Thank you for sharing your experience with your son.
Hugs to you.
Tippy have you taken the NAMI Family to Family classes? I highly recommend them to you or anyone else, it helps to learn all you can about mental health, it’s another way of support; we’ve been where you are now: the unpleasant, sad, uncomfortable and unsafe for everyone concerned feeling that comes with the illness and still we go through the uncertainty of it all. The most important thing to do is to be safe and if necessary you have to leave the house. It’s one of the things that is recommended, there’s is also many mental health related little videos on YouTube that are really helpful, we have to learn a new way to communicate with them and to stay in control of ourselves mainly not to REACT, our loved ones go through madness in their brains, so many voices and hallucinations; during the NAMI class there’s an illustration of what they go through.
It helps, I’m not saying it gets better but it gives you tools to have sympathy and tips for navigating the situation with your loved one.
Hold on tight and try to keep the hope. I know that it’s easier said than done, my brain goes on ‘frozen’ mode when my son goes through the cycle: he doesn’t function and neither do I.
Take care of yourself, it helps to visit this forum often.
Hugs to you and your family.
The pharmacy should be able to provide the meds in a blisterpack with dates [at no extra charge].
Your story is heartbreaking …9 times in hospital [and the trauma that involves, not to mention potentially making the sz worse]. I totally understand that we need to protect people from the horrors that went on in the past of people committed simply because a husband got tired of his wife, or a child didn’t act the way parents approved, but schizophrenia is a lifelong condition that 80% of people who have sz are not able to realize that they have this and stay on the medication to manage the psychosis. Being at the mercy of whether a judge is supportive or not seems a huge failure in society. I’m frustrated for all of us. No need to respond to the rant, just had to get it out. Best wishes and staying hopeful is important.
Dear CanadianDaughter, who’s your message for?
‘The pharmacy should be able to provide the meds in a blisterpack with dates [at no extra charge].’
I’m trying to look for the thread. I’m interested in knowing about it though.
I definitely have realized that my son is one of those that won’t make the connection about meds helping him to function and have some freedom and stop taking them and getting into trouble; last due injection he didn’t want it and he asked me ‘what have I done?’ I told him that it wasn’t necessary to do anything but it was necessary for maintenance to stay off the hospital and since he was so determined not to have the injection he called the hospital and 911, he was taken there and I was lucky that the nurse made the assessment and came outside to talk to me first and we went both to tell him that if he wanted to come back home it was necessary to have the injection so we stopped over my daughter, who is a nurse, and she administered the injection because they don’t do that at the hospital
It was Sunday and they don’t administer injections at the hospital!!! At the hospital only after a court hearing when they consider that the person is a danger to himself or others and their mental state is very deteriorated. So in the judge’s opinion the person has to be willing to go at the outpatient clinic! And ‘it’s our job to convince him’!
What a lack of understanding, it’s really frustrating!
They can ‘help’ after they do something really stupid and they end up homeless or incarcerated. We’ve gone through that also.
That’s my rant. Thank you for your empathy.
