Family and Caregiver Schizophrenia Discussion Forum

Numb, son refuses to get help, moving to a tent


#1

Can anyone help me to understand how to get through the dark veil of Sz. My son who has been back living with us for three months has driven my husband to the brink of a major explosion. My husband has tried so hard to be supportive and loving, but living with a mentally ill person who acts so arrogant and righteous is exasperating. He has no ability to complete any task other than to get the free stuff like food stamps and pursue his addiction to pot. He has been “barely” working with his dad to pay off some of his debt to him after he sent him to the west coast for a job and ended up homeless on the street of LA hoping to get a job as an actor. He had no money and barely surviving on the streets. He came home and was in a psychotic episode that seemed to have been going on for at least a month. He finally has stabilized but is extremely difficult to tolerate. He can barely work, and when he goes to work he causes so much anxiety like making my husband wait a half an hour or more, not bringing food ( his dad will make him lunch), unable to communicate, always looking for something “lost”, randomly disappearing, angry outbursts, inappropriate discussions… So tonight the damn broke for my husband. I was so worried I thought a major fight was going to happen. I broke it up and openly and lovingly confront him about his mental illness. He refused to discuss it and said he would never go for help. I even offered to go with him and tried to not label it as a “bad” thing but as a sickness that can be helped. He was so sure his mind works perfectly, but he claims he has a physical disability, his back. I don’t want to write too much and it seems mellow compared to so many of you, but I feel like there is no hope for his recovery. My husband pretty much fired him for his own sanity and he is going to leave home and live in a tent. We live in a rural area in Hawaii so he will survive, barely. But he only has a bike, no phone ( he smashed it because he got angry), no shower, water… I try not to, but I worry, worry. worry.


#2

My local community mental health center has low income apartments, available sliding scale.


#3

My heart goes out to you guys. The behavior you describe is classic schizophrenia on a job site from what I know about the illness. I find things that my son can do alongside me or supervised but beyond that I don’t presently have much more in the future in my dreams for him then you he currently do. I know everyone’s different and please correct me if I’m wrong but this is our new reality. I suppose for lack of a better word.

Yes we can be an advocate for them to move out on their own and help them get there but they can get in worse situations. That fear of the unknown is still there and always will be as long as we live I suppose.

We’re setting up a trust for our son in the event we die and his monies will be handled by a banker. No one is actually standing in line to do that and he has already shown us what he would do if he had money.


#4

I empathize with what you are experiencing. Since the onset of his illness my son lived in an abandoned teepee for a short time after a failed attempt to go to college on the west coast. He has lived with his dad, which ended with his dad living at a hotel so that he wouldn’t feel threatened by our son, in apartments I have found for him, which always ended in threats of eviction, in residential care facilities and assisted living facilities, and with me, which ended for a couple of reasons - my husband’s low tolerance for my son’s behaviors, and for my son’s disrespect of our property and of myself.

He now lives in a house that I purchased for him to rent, using his SSI money - which of course comes nowhere close to covering the actual expenses.

I’ve lived thru smashed phones, smashed computers, smashed walls, insults and abusive screaming. My son has been in jail, and has gone thru mental health court twice. The last 10 months have been relatively stable since he was started on clozaril. He still does not believe he has a mental illlness, but does take most of the medication prescribed. I don’t think we would have reached this point if I did not get guardianship. My son resents that to some extent, but I know it is why he is as stable as he is.

How old is your son? My advice, just as another parent, but not given in any professional capacity, is to do what you can to maintain contact with him at this time. Keep a diary of his behaviors. If he is doing things that can be considered a danger to himself or others, consider getting him admitted to the hospital. Try to be supportive without agreeing with his delusions, and don’t even try to confront his delusions or illness.


#5

Thanks to you and Vallpen for your kind words and heart wrenching honesty. I have been keeping a written account of some of his various behavior. I had no idea last night this would lead to him moving out. My husband was at his wits end and I was just trying my best, to support him and at least attempt to see if I could gently guide him into some kind of office for an assessment. Sadly, my hopes for helping him are very dim at present I suppose not surprisingly, my family feels a great sense of relief. I must say I don’t feel the same. He’s only 26 years old and his life course is set at an “extreme” level. He deserves so much more love but he can’t accept it. My sadness continues. It is such a mind blower that this is an illness that can not be confronted directly, it is such a challenge for me. I spent my early years with indirect communication and I have lead my adult life attempting to be a clear communicator. I am in a situation that can not be dealt with directly and it is the greatest challenge of my life, and believe me I have had many heavy challenges.


#6

I couldn’t talk to my son about anything until he was medicated. There was no reasoning with him. He was NOT sick, did NOT need help and everyone was evil for thinking so. My son ended up in the hospital for 5 weeks in May and they put him on Invega Sustenna shots because he was not compliant with his meds. It took a few months but he slowly came to see that he does have sz and needs the meds. He is getting disability now and food stamps. It’s not much but it’s a bit so he can shop for his own food and he’s saving to move out. He’s lived with us since he got out of the hospital. I told him that if he stops going to the doctor and taking his meds he will lose his disability $$ and food stamps and they will find out. “You won’t be able to live on your own if you stop the meds.” He really wants to be able to move out in the spring. This is how we deal with it right now. I’m sorry you’re having to go through this. It’s sad, scary and a helpless feeling. Please keep us posted. Hugs to you.


#7

You are dealing with a whole lot of stuff and trying to convince a 26 year old that he needs help is a tough challenge. Like you I bent over backwards to help my child and I’m not sure how helpful I was. When she wanted to live on the streets I had to let go because nothing I could say or do would make any sense to her. My daughter quickly learned how tough life is on the streets. She eventually did get help but I can’t say my daughter is better today. Part of the problem for my daughter is because of her mental illness her emotional maturity is very stunted.

As his mother no one can tell you what to do. Many of us discover that even after years of dealing with this terrible disease is we find we don’t know all that much. Trust you gut but at the same time don’t abandon your relationship with your husband. I did that and eventually paid the price of divorce.

My former husband was a huge source of emotional support but now I don’t have that anymore and I have to handle all of this by myself and the bio dad of my child is himself extremely immature and not able to handle any kind of stress and I suspect bio dad has a mental illness. IMHO fathers tend to be a lot tougher and pragmatic than mothers. So please tend to your relationship with your husband – its important otherwise you may find yourself living well into old age with an aggressive mentally ill child who will disrespect you and tell you that everything is your fault on a daily basis. It get very lonely when you are dealing with this all by yourself - so take care of you and husband. Your husband needs you and you need him as well to soften the constant stress your son brings into your life. My two cents for what its worth.


#8

So sad, I’m in tears as I hear your story…yet another tragedy of this illness. I’m glad you found this forum early. I literally went years not knowing it existed. It is the only place where people know exactly what you are going through. Where else can you say my 22 year old son trimmed his beard today and get a high five. Sadly I don’t share the small victories like I should. I believe In sharing our stories, our hopes, and small victories, we can get through this and come out somewhat whole.

I will never look at a homeless person the same. I know that they are someone’s son or daughter and there is likely heartache remaining at home. My son will go out of his way to help them or ask me to stop and give them something. He has a tremendous heart. He is our only child and of course he is spoiled but he does care for others. Unfortunately, his illness does not.


#9

Molly, I’m so glad you posted this. What a wake up call. We totally missed our 35 year anniversary this week and things are relatively stable right now. I can see how easy it is for marriages to get put on the back burner when we are dealing with so much. Thank you.


#10

@govinda My family member lived outdoors near our home for about five months a few years ago. I brought food and sometimes clean clothes. Lots of invitations to family gatherings or to take walks or spend time together. Most were rejected, but I kept asking. I never gave money because of the potential for spending on drugs or alcohol. They found a church where there was coffee and some pastry each day, a few other resources, came home after awhile. I guess I could have given more ideas for resources.

I like Vallpen’s advice to nurture the relationship and to stay friendly and enjoy time with your son when you have it. That way he might feel how much you love and value him.


#11

My heart goes out to you all. No one can know the anguish and frustration of having an adult child who suffers from this horrific disease. Every story I read here touches home. I feel blessed that my son has been on an “even keel” the past few years. He is 32 now but for the first, I’d say 10-12 years, it was a roller coaster ride. I talk to him, do things with him. Our relationship is manageable now. He just went on meds a few months ago. They help a little. He at least isn’t on the street and I have family to help with him. It seems as long as I spend some quality time with him it helps to keep a bit of reality in the mix. I’m glad that he understands that living with his family is the best for him. That we love him and are on his side. He accepts this for the most part. Like anyone living together in a household takes compromise no matter what the issues are. His room is his room. It is a disaster, he draws on the walls and paints it and draws again. He is literally in his room 23/7. But he prefers that. He feels safe I guess, It’s familiar. So I don’t care. If he wants to pick it up, he does, if he doesn’t thats up to him. I’m just glad he is home and he is glad to see me when I get home. I laugh with him alot. We talk about whatever. This is as good as it’s been and I’m extremely thankful to have gotten to this point. Because I’ve been to the places I see parents who are at their wits end wondering how to deal. I think I’m lucky I was alone in this. My husband, Willy’s father, passed when he was a teenager. I didn’t have anyone else I had to consider in my choices of how much or how far to continue to try and reach him when he was out on the street or missing or just plain bat shit crazy! It is a road that is full of heartache. But at least in my case it has become livable and I am thankful now I never gave up. But everyone is different and it seems that everyone’s disease is different. No one chooses to have this affliction. No one. I pray that things get better for everyone involved.


#12

My son also went out to L.A., to pursue drumming career. After he ran out of money, I helped support him, for a year. While out there he had a psychosis and when EMT got to him, he was very paranoid, I was called by police nurse. Was held in mental hospital for 72, that is the limit, they can hold someone. I went out to see him shortly after that, and you could see he was acting very weird… needless to say he had to come back to us in New York, by the end of the year. Because of his aggressiveness towards his father, we called the cops and he was admitted to the mental ward. Because he refused medication, the psych Dr took him to mental health court and he was mandated to take the meds. He was given shots twice a month. And after stabilizing him was released to us. It has been a rollar coaster ride for past 4 years. Bottom line, when he refuses to take his meds., He is 30, he relapses and ends up back in hospital, till he is back on them and stabilized. Right now he has been on a pill that dissolves in his mouth and seems not to have many side affects. Only advice I can offer is when he is aggressive towards you or your husband, call the cops they will take him to mental part of hospital and perhaps if he refuses the meds , because they are in denial, can be mandated by court to take them… it’s a sad situation for them and us, but it’s not their fault, and know they wish they could be normal, like they once was.


#13

Shame so sad. I have solid advice to give you. Having been through all you are going through for years (my son is now 43 and his episodes started when he was 18). You have to apply tough love! You must understand that even though he is mentally ill he still has choices. I eventually threw my son out onto the streets and warned him that if he came ringing the bell I would call the police to arrest him. Needless to say, he did ring the bell after having been on the streets for three days in a very violent area. I went to the gate to remind him of my threat to call the police. He looked so awful and he had the ‘crazy’ look in his eyes. He said “mom, I am hungry and I don’t feel well”. I said “Shane, I am not interested, you know where the hospital is so if you are not well then you must take yourself to the hospital and I warned you that I was going to call the police if you came back here”. The police arrived and asked how they could help. I said “Officers, this is my son who is mentally ill but refuses to take medication and has been stealing from me to buy drugs. I have thrown him out and have warned him that if he comes back and harasses me that I was going to call the police, so officers please arrest him”. They asked if I was sure this is what I wanted them to do. I said yes. They told Shane to get into the van but he said he would leave which he did. I never heard another thing from him for five days and as you can imagine I was besides myself imagining all kinds of things that could have happened to him. I eventually got a phone call from the hospital to say that he had admitted himself and that they had been treating him and his had stabilized and asked me to come and fetch him. I told them that he was and adult and that I was not responsible for him and that they needed to decide what to do with him. They got him into Tara which is a clinic here in South Africa for people with mental disorders. He was doing well there so I visited him and brought him stuff. When that stay at Tara was over they also asked me to take him home. I said NO! They found him what we call here a rehabilitation centre where people with Schizophrenia and other mental disorders live. It was the best thing I did by using tough love. Not only was I able to regain my sanity and some normality in my life, but he also realised that he couldn’t mess with me anymore and that it was up to him to decide how he was going to handle his life (take meds etc and co-operate with the people who are trying to help him). He is still at the rehab which has become his home. They do good work in monitoring his meds and have workshops for him to work in to keep him busy. It is also good that he is with people with similar problems to relate to and he does not feel alone. I visit him often and speak to him once a week. It doesn’t mean that because you APPLIED tough love that you dont love your child. If anything, you love them more because you did what was best for them and they know it and respect you in the end for it. Please don’t let this disorder destroy your life! You can manage it positively by not allowing the illness in your space. Your need to create a safe space for yourself in order to manage the situation effectively. Whenever I have a crisis in my life, I mentally remove myself to the top of a high mountain and pretend I see my issues running around in circles at the bottom of the mountain. I say "now I am king at the top of the mountain, in charge of all the little ants (problems) at the bottom. I am not going to react in an emotional way. I am going to act in an intellectual way to get the ants to march to my tune. I hope this has helped… I will always feel sad about my son but Ive managed what could have been a catastrophic situation for everyone. One last word…you must be firm to in sticking to what decisions you decide to take, even if it means you might find him dead somewhere by not allowing him to destroy your space. I know it sounds very hard to say that, but he has choices…


#14

Dear Govinda,
My son was like your son once. He had a traumatic brain injury (from being attacked) and it brought on the illness like never before. The man I was engaged to and lived with could not stand my son. No one could. But I knew him so well that I could see how much he was hurting, which was a great deal. My fiancé told me to choose between him and my son, and I chose my son.
Nami classes and support group were my support, along with my son’s dad, who I brought along and educated about it all. He also had a milder form of the illness, so this was challenging, but ended up being well worth it. It’s a long story, but I just want to tell you that now, ten years later, my son is doing so well. He is his psychiatrist’s star patient, and a very loving, kind and gentle person with deep spiritual wisdon. He still can’t “work”. He is on SSI, and lives in a bedroom and bath cottage behind my (rented) house. His psychiatrist says he will continue to improve to the point where there won’t be anything he won’t be able to do. I don’t know about that, but it is obvious that his condition will continue to improve, as the years progress, because his brain is healing. He is on Invega Sustenna, by the way, which is a long acting injection, and has been one key to his brain healing.
By the way, the anger melted away very early on, when he could see that we were on his side.
Whatever your course, I can’t encourage Nami classes and support groups enough. And take your husband, so he can get educated along with you. It is a mental illness, meaning his brain is ill. Seeing as it is the brain that is ill, it is very often extremely difficult – almost impossible – for mentally ill people to perceive their illness. But it is an illness, nonetheless, and I advocate extreme kindness and care towards mentally ill, which is usually not what they get, as people expect more of them than they are able, and become angry at them, instead of learning about the illness. There is a lot we can do to help their healing process. Get involved with the patient advocates and family advocates, as well, when they are hospitalized. Read the many books on the subject. These things will give you perspective and tools to help your son.

May you, your son, and your husband, and all involved be blessed.

ILoveMySon


#15

I agree and relate with ILoveMySon…and Hereandhere.


#16

Hi Shane1, I’m glad you are happy with the outcomes your family has gotten.

In most places in the US, our family members cannot be placed in a hospital without presenting a danger to self or others (and very often not even then). There is no long term care or rehabilitation specifically for mental illness in a residential setting available for people with severe mental illness in the state where I live, but some US states do have these places, at a high price.

We family members are choosing between long-term homelessness, jail or prison (ten times more likely than the hospital during an episode of psychosis) and early death or try to find our family members housing we can help with or live at home or possibly in an assisted living facility with the elderly if their behavior is good enough. Unless we USAmericans were extremely wealthy and lived in the right US state, none of us have the options your family did.

The father of John Hinckley Jr wrote about how tough love drove his son deeper into psychosis. This seems to be what happens to many families. I am 100% glad that tough love worked for you in your family’s unique situation.

Personally, I do not believe that tough love is a response to any medical illness. Obviously, it may be a necessary survival strategy for the family if there is heavy drug use.

If the US had the resources your country seems to, I guess it might be a better option.


#17

Thank you so much for your insight. Love and support is usually the way I try to approach most challenges, this is big lesson in unconditional love for sure. However, my husband and younger children need to be safe and ‘sane’ as well. My son is still in the same living situation and has been banned from a small off grid community he regularly goes to. He claims he doesn’t even know why. So, he’s solo and that is not usually good for him. He looses track of reality even more. I pray for him, but I just have to wait and see what happens. He came by the other day to get some of his stuff and I offered to get him another phone because I really have a hard time not being able to keep in touch. As difficult as he can be with us, he usually stays in touch. During his visit we had a few minor altercations, but he stayed for dinner and I gave him a ride up to the top of the road and he was off hitching with his tub of things. My husband barely said a word to him when he was here. It’s so challenging for him. NAMI classes start here in March and I’m on their contact list, but that’s a ways off. I did stop in at Adult Mental Health and they filled in some blanks for me in trying to eventually get him on disability. Thank you all for your loving support. Much Love!


#18

…sigh…
My son is 28 next month. Somehow he has done ok (not well, but ok) off meds for several years. The last few months we’ve been watching him spiral. He has lived in a tent, then most recently in a camper where his cat died of neglect, with cat feces everywhere and infested with fleas. Although he was responsible for the cat’s death, he felt horrible and it pushed him over the edge he was already teetering on. His cat went everywhere with him. Stuck by him last summer when he went to the appalacian mountains to pan for gold (because he was going to get rich!) and when that didn’t workk out he went to the Gulf of Mexico and the cat even was on a kayak with him. Anyway…My other son owns the camper and finally is setting a match to it. My son with sz moved to another camper, in the yard of another son, and has been spiraling down so fast. He stopped talking and showering about 3 weeks ago. The following was pieced together after hours of phone calls between all my kids. (I have 11!) Yesterday he was here for Thanksgiving and refused to say a word to anyone. Drove one of my other adult sons home. The entire drive he was playing with a large machete type knife he keeps in his car “just in case”. He dropped off his brother and drove the hour+ home, getting pulled over for speeding around 1:00 am. That was the last straw for him. He threatened the officer with his knife, then put it to his own throat. An ambulance was called and he was brought to a hospital about an hour from me. He called me mid morning (when I was still looking for him at the area ER and Jails) ranting “They want me to put on a gown, but I just want to work out! But the won’t let me work out because I’m in a towel. If they just let me work out I’ll put on their &@# gown!” Chemical sedation does wonders. By the time I got down there a few hours later he was sound asleep.

He signed a release for them to talk to me, “She’s the only one who still has my back! Everyone out is out to destroy me!” Since he threatened everyone else he knows with bodily harm, including an officer and the doctor, (and he gave graphic details what he would do to them, and how, and what he would do with their remains!) they are going to find a treatment bed an recommend commitment. I was able to get him committed several years ago after a suicide attempt.

I have 6 kids still at home, all who have Down syndrome. I can’t babysit him anymore, but I’m his mom. Like you said, I try to make sure he has cell phone service so I can keep in touch with him, and I frequently give him gas money to make the hour+ drive to our house so I can keep tabs on his mental health.

I’m praying he gets committed. At least its 6 months of medication and therapy while he tries to get back on his feet for the 100th time in his very short adult life.


#19

I’m sorry that this is happening at this time but it sure sounds like it will be the best thing for him. Some of the people on this site admit without being committed their life would have been worse. He will hopefully get the help he needs and it is wonderful that he still trusts you. Many here know what you are going through. Even though he is there I’m sure your heart is heavy and worried for him. Try to take care of yourself too as you have a lot of responsibility in you. God bless you and your family.


#20

@Mom2 - What do you mean by committed? Do they have something after a 72-hour hold in the hospital? I’m new to this (although I think my son’s symptoms started about 7 years ago and his first psychotic break was last August). So, I’m trying to learn as much as I can. Thanks!