I am a single mom with a 27 year old son diagnosed with Schizo-effective. My son lives with me, is unable to work or continue his education. Which means he’s home alone all day while I work, with zero interaction with others.
For almost nine years, my son would go to the Doctor, take medications, etc. However in 2018 he attempted suicide. I’m grateful he is here! Since this attempt, he has been hospitalized twice, both times due to episodes, while on medications. He was just discharged this past fall from his second hospitalization, which was involuntary. He was in a manic state, took my car for a joy ride, came back and locked me out of the house, and cut up all of my bank cards and driver’s license. I called a crisis hotline to come and try to help, and then had to call the police. I must say that the police handled the situation very professionally.
Since being discharged from the hospital, my son has refused to go to the Doctor, has refused any medications, and has been a non stop walking and talking delusion. All he talks about is moving out of my home, how he is super rich and going to get married, and cannot acknowledge any form of reality (like how is he going to pay for a place to live, etc.). All of his friends have moved on with their own lives, so he has no outside interaction with anyone- it’s just me, and I can’t take it anymore.
I have applied for disability for him, put him on lists for a group home, written letters to several people/companies asking for help to get him in to a structured, private pay facility, begged friends to come over and visit him, read every book published, gone to NAMI meetings, support groups, signed him up for studies, and I just have nothing left on the inside of me. I feel like my knuckles are raw from knocking on doors with each one of them slamming in my face.
Have any of you ever reached the place where I am, and if so, what was your miracle- what happened that helped you continue to stand and fight for your loved one, and what made a difference? Please share your story with me.
Oh, I am so sorry to read this. After 8 years! This is probably my biggest fear, that things would for some reason turn bad again.
I would pursue getting guardianship. I have guardianship of my son, which I think is the only thing that has brought us to the current state of semi-stability - which hasn’t been as long as your son’s.
I have all of the paperwork ready for guardianship, but for some reason, I’m scared to file it. I’m afraid that when he is served with the paperwork, that he’s going to get so mad at me and take off. What was your experience like when you began the guardianship process, and after you received guardianship, what did it allow you to do for your son that you weren’t able to do before? Were you nervous about having him served?
My son was so delusional at the time, he wouldn’t talk or meet with the lawyer assigned to him, and and never came to the court.
I was nervous throughout, and my son was resentful for a while, but it is now a non-issue. I was dealing with anger on his part regardless.
I was awarded temporary guardianship for 6 months and then permanent. I was very sad throughout it, and sometimes consider reducing the guardianship, but I am scared of that!
Guardianship allowed me to make more decisions about medication, hospitalization and living arrangements. It also allows health care professionals to talk freely with me without having to get permission from my son. I’m also aware tho, that in the end, if my son for some reason refused to take medication that in actual fact, forcing it would be difficult. But in our case, it does seem to provide just enough leverage.
Thanks for sharing that with me. I guess I’ll go ahead and file the paperwork, and “let the chips fall where they may” so to speak. So far, I’ve been very fortunate with medical staff and communication, but I also can be very tenacious and they probably just tell me things to get me to be quiet and stop bothering them so much!! Maybe it’s the leverage I need to help me not feel so alone in trying to get him all of the help he needs.
Its a lonely walk we are on - but this group has been a wonderful support for me!
Yes, been there…
She has never married, no kids, only child, military brat, traveled the world, plenty of money, great job and we are close to 10 years together… divine intervention…
Yes, I can attest to the fact that a relapse is very, very hard. First time around, it took 1 1/2 years of gradual decline to get my husband to see a psychiatrist and then there was the miracle of having him willing to try medications (despite the anosognosia) and then the additional miracle of getting him (mostly) back again (ie. return to work, reconnection with friends and hobbies, travel etc. despite occasional flare-ups of paranoia and increased irritability in the face of day-to-day stressors).
Now, five years later, we are seven months into this relapse with no end in site, despite having had a psychiatrist and a psychologist on board from the start this time. Unbelievably frustrating for us both (as he does desperately want to feel better - he just sees it as not happening until the surveillance stops and until his wife stops acting “weird” and maybe assisting his enemies). Sigh.
Seems like it should be easier the second time around, but I think it is actually harder for us both.
I’m so sorry to hear your story, which many events on your son’s life is like reading my own son’s story.
My son is now 39, diagnosed at 25. For years, he lived with me, but was refusing his meds, not going to Dr.'s appts, isolated, friends like you say, made their own lives,For years he lived on his own, renting an apartment, only God knows how did I survived that time, it was so difficult, having to go everyday to feed him, on weekends cleaning his apartment, which was a mess, no schedule to eat, to sleep. He used to vomit very often in his living room, I would have to clean it, nothing seems to work. Last time he was in the hospital, I decided that once he’ll get out, he’ll have to live in a group home, which I had find one for him, so that has been a blessing for me, he’s not isolated anymore, he lives with a group of males around his age, has a roomate, they eat all together, he goes to the Library, I leave money with the person in charge of the house, he gaves him 10 dollars daily, so he could have lunch or a drink when he is out.
He keeps telling me about moving again on his own, has his own apartment, but there is no way, I’m going to put him again in an apartment, at least, not for now. They take him to his Dr.'s appts. he’s been on invega shot every month, and this month, he’ll start on the invega every 3 months, has not been hospitalized, very stable. So, my recommendation will be for you to look for a group home. This will bring him the stability he needs and will give you peace. To me, this group home was my miracle , please find yours! My best whishes, you and your son are in my prayers now.
Ack! The surveillance! So familiar…
Oh no! Are they following you, too? 
If I could find a group home that would be a good fit and comfortable for my son, I would pursue that. Just haven’t had much luck finding anything in our area.
Guardianship changed everything for me, it gave me a renewed empowerment. My son didn’t like it, not one bit but given that he was not yet stable and not yet of sound mind, I knew I couldn’t let his complete opposition of it stop me. He literally did not know what was good for him and I definitely did. Even with the guardianship there were arguments and up and down days BUT I could sit in on every single appointment and interact with the doctor. I could have him admitted to the hospital when needed. I could make things happen whether my son liked it or not. It took time but eventually it got better. Full disclosure, I went on permanent disability during this time which allowed me to be home full time. I am not sure things would have gone quite as well had I left him alone or had strangers caring for him during this time. I don’t know what to say about that aspect. I still think guardianship is the way to go though. It does give you a voice that matters when your son is not doing well. I hope it works out for you I really do. PS If you can speak to a caseworker through mental health or even a mental health ombudsman, they can be very helpful linking you with many resources, just a thought.
The only thing that will help him here is a court ordered depot shot. This restores enough sanity to get through to him and try other things.
Best of luck to you and him.
@Modi This is pretty powerful and I only share it, in hopes that it will help.
she mentions bi polar but anosognosia goes along with many
brain disorders .
When A Family Member Refuses Mental Illness Treatment
you are your own miracle maker
You can’t live like this. Give yourself a break. You are no good to your son if you allow his illness to break your spirit. Others here have given you great advice, which I see no harm in taking. My best regards.
My miracle is a little different, because in a sense I am my own caregiver and the involvement of my mother in this story is indirect. While I have said my recovery was lucky in the past, I don’t think I’ve elaborated why I feel that way.
Around the start of my prodrome in my mid teens, my mother got a reading from a psychic. I’m not sure what prompted this and I don’t know any details other than the name of the psychic. In the reading, she asked about me and my path and the psychic said, “A lucky star guides him”.
I don’t normally live my life by the words of psychics and I certainly don’t seek their counsel, but these words stuck with me. And when I was in a psychotic state, hours away from being hospitalized, I traveled to a city with the intent of turning myself into the FBI, I realized I had no idea where the FBI office was located. The car ahead of me had a law enforcement association bumper sticker with a star on it, so I followed it. It led me to a place where I presumed the FBI maintained a safe-house and my activities there eventually brought a police deputy who in turn was wearing a star. I was offered a choice of going home with my mother (who had arrived by then) or going with the deputy. I went with the deputy, because she wore a star and I trusted her.
From there I was hospitalized and eventually accepted medication and recovered. For a short while, I contemplated following more stars, but I realized stars are a ubiquitous symbol, so I assumed this was a one time thing.
My encouragement here is you won’t know what you might say or do that helps a loved one follow a better path, and it’s likely that your help is unintentional or misunderstood, but you do influence the people under your care and things can get better. My sister says she sometimes hears my brother with bipolar disorder mention recovery ideas she’s sure I’ve discussed with him, and assumed he ignored. She says I have more influence than I might think and I’m sure the same could be said of many caregivers on the forum. Happy accidents can and do happen, they’re just hard to predict. There’s always hope.
Thank you- I really would love to get my son in a group home- the hospital social worker was supposed to put him on the waiting list, and I haven’t heard anything back yet. I think that’s a great option because there’s interaction with others, and my son might feel like he’s somewhat on his own instead of living with his mom- he really wants to be out on his own, so this would be an option I would agree to. He can’t be “alone” in a place- even just yesterday, he didn’t turn the coffee maker off and it was such a mess when I got home. He wants to turn the Christmas tree lights on, but I’ve said no- he just forgets things so easily, and it’s a huge safety concern.
Just an aside to keep in mind for future - I had some of the same concerns about things being left on when my son started living on his own - I try to find appliances that have some kind of self- shutoff to reduce that concern.
Thank you for relating this. I also sometimes am surprised to hear my son say something based on something that I might have mentioned to him in conversation some time in the past. Our loved ones are always listening, and while their brains may be busy doing other things, the things we say do matter and can have impact.