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Navigating the feelings of whether or not to let go....?


#1

In those early and more crisis moments when are loved ones are in and out of hospitals, still fighting medication mandates or needs, and seeking some kind of independence or escape…it all feels very dangerous. I really struggle with feeling like my son’s life is in the balance of my decision making.

My son has no insight and threatens each month not to take his Invega shot, to leave, and now his conditional release is over…and he could essentially choose both. He refuses to consider any kind of group home, in fact he only wants independence on his terms…and he wants it far away from anyone in his family. Currently, he has no means to support himself, he will not likely ever be able to work.

I wonder when he…this experience…our life in this together…I wonder when or if it will settle?

I continue to ponder what one of his doctors said during my son’s last hospitalization, and that was…"…regardless of his absence of insight, much of the course of you son’s illness must be left with him." All I could think was…Seriously?? It is so counter intuitive to me. How can it be left to him if his executive functioning, his decision making is disordered?

Some of his statement is due to how my son experiences this illness…he fights any control in his life. His doctor said, we may discover that the only level of insight he will gain will come through his experiences, like…“I have to take my medication because I don’t like going to the hospital.”

So the question I have today is for those of you that have made it over that first few series of mountains with your loved one and struggled with whether or not to let go. I realize the circumstances, the risks…all of it may be different for all of us…but I am trying to decide how to navigate the next few decisions.

Like @Misty 's post…“what do I do?” It just feels so dangerous to bring them home sometimes, and in some cases, it truly is not the right thing…but a hospital will do that because to discharge plan for the alternative is sometimes more of a challenge.

In my case, to give him more independence to see if he can stretch or further improve the quality of his life doesn’t seem realistic, but it is what he wants? Thing is, it would be easy if he accepted my guidance, anyone’s guidance…but he doesn’t. He fights everyone every step of the way, and yet, he cannot and is not decision making properly. I wonder if that was what the doctor was trying to explain to me? That some of this I will have to leave with him so he can reconcile a few things? So when my son won’t meet me even part way on what independence could look like with our support, does that mean I should let him go on his own path with SSI? It just seems like a train wreck to me.

Which decisions, and at what cost? It could be tragic and it could even lead to his death? That is a very real consideration for many of us, I am sure.

As it sits today, I just listen, and I simply explain that we cannot afford to help him live on his own. He fights, then he settles into the wait we all have on his SSI determination (which will likely be approved in the coming month). I have him on a Section 8 housing wait list in the city closest to us that has housing units (it may take 2 years). He is on a wait list for a group home (which may be over a year at the least). He doesn’t want either. He wants to go to Vegas and make Billions and then he can live the life he wants.


#2

Oh…I wish there was an easy answer for all of us…there just isn’t. I, like you, know that without our guidance, our loved one is going down a very dangerous path that could lead to either us having to dig them out of some major trouble, legal problems, or the absolute worst which is losing them forever. Since each person with this disease is different, and we all live in different places with different resources, I can only tell you that you aren’t in this alone. That hopefully some lightbulb will come on in your sons mind that helps him see that he is better off with you guiding him. He obviously is a strong willed person and am wondering if he always was? Even before the illness. In my case, I did not fight my son on it. I let him talk and vent, made things way more difficult for him to move out (behind his back), and then made it as inviting as possible for him to stay home with me. Always hoping that enough time will go by and the medications will get to the peak effectiveness before he starts considering it again. All the best to you!


#3

If he receives SSI and a housing voucher, then that’s great because he will get the chance to be somewhat independent. I say chance not knowing the odds. We are also not in the position to pay for our family member to live away from home, though I know people who are and this works well for their families.

The doctor is right. There is a chance your son might learn through experience. Again, who knows the odds?

The risks we take when letting go are so incredibly high. I’m not trying to upset or frighten anyone, but these risks you mention of homelessness/ missing person, legal trouble, physical injury, and losing our family members are ever-present whether they live with us or not. Obviously, a stable environment and good treatment decrease the risks.

I don’t think you would be decreasing the odds of a good outcome for your son if you helped him move out (with SSI and Section 8) and let him try to be on his own near you. In fact, there is a chance that he might rise to the occasion.

None of us know what’s going to happen. I believe it is good for our relationships and peace of mind to try to support our family members’ goals when the goals are positive. Because failure is possible, you can be there if that happens or if he requests help.

Ticket to Vegas, though, sounds like a nightmare. Rep payee.

How old is he?


#4

I have to trust my gut to fight to “save” my child, no matter what that means. It’s easy for a doctor or another clinician to suggest you let the cards fall where they may because it’s not their kid whose life is in jeopardy. These people will just go home after their work day is done, have dinner with their families, and then go to bed. I know doctors and clinicians care about their patients, otherwise they wouldn’t be in their kind of work. But, as I said, it’s really up to us as parents to save our children.

Fight, tooth and nail. These are the “formative years” of this illness. Just as our children needed our intensive guidance during the early formative years of their lives, they need us now.


#5

I wish there was a recipe…or something that helped us know that what we are doing is exactly what we are supposed to be doing. I could settle in for the hard work if I knew that this is exactly what it is supposed to look like at this stage of the game. Thing is, it is simply so hard to know…or, how much to push, how much to let go, what to lift up, and what to let go!

@Hereandhere, my son is 21, and he doesn’t have the SSI yet, but we plan to get him a rep. payee when it comes through. It is likely that they will insist on it based on how disabled he is in this illness. The good news is, I have been able to spend 4 months repairing a relationship with him following our involuntary hospitalization petition. He has had some remarkable progress, but he is still very disabled in this illness. He knows I love him, but he still thinks we have been the stumbling block to his greatness based on the decisions we made in the recent past (like hospitalizing him). There are aspects of his life that we feel he values here (his independence, autonomy, and alone time…he has his own “apartment’ish” space attached to us that we have created in the last year), but I sometimes wonder if the desire to leave is when his thinking is most disordered? Perhaps when the sustained release aspect of the shot is not working as well? It tends to be when he expresses more of his delusional thinking (I believe he thinks that way all of the time) like going to vegas to make billions, or how he is working on immortality and his biggest problem is how to get his conscious into an android. Both my husband and I believe he really doesn’t think about his circumstances most of the time and he just goes about a day…often lost in his mind in whatever is occupying him at the moment. He describes it as he has a thought and before he is finished with it, he has to start it over…and by the 3rd or 4th time, sometimes he forgets why or even no longer finds any of it important.

Before the illness, he deeply desired independence and his own creative direction in his life, and he remains so when he focuses there. Thankfully, he falls short of executing any decisions. And yes, @Leiann, he has always been strong willed and a bit stubborn when he is not able to express himself in the ways he feels he needs to…he always liked to make his own way and for the most part, made very good decisions. So, I expected this in his decision making in his illness. I guess, as I write that, I have to make more room for more ways that he can feel that way in our life next to us currently.

The good news is, he has never been a risk taker…which is why I believe he has not packed and left yet. He wants all these things, but is a bit risk averse…we hope it stays that way.


#6

I think some of us have to release them to their own journeys. Maybe just as much as we can stand? Don’t we have our own journeys also? Do we have to do things we don’t believe in or make decisions we can’t live with?

Like everything else in this business, no one knows which decisions are correct, which decisions will work - there are no guarantees as we find our way through the swirling, changing fog that is our reality. We don’t even get a constant fog to wander around in.

My son has lived in neighborhoods that scared him. The worst one was blocks from a homeless mission, though it was the gang activity made him afraid to walk out his door. He was robbed several times. I am pretty sure those experiences play a major factor in why he stays here in a garage apartment on our property.

I think there is something to what the doctor said to you. The whole “leave them to their journey” scares me too.

Our FtF class was addressed by a female who has scz. She had been thrown out on the street by her parents for refusing to take meds. She was raped and beaten while she lived on the streets. Eventually she returned home and wanted to take meds. She has stayed med compliant and returned to school. She is grateful to her parents for being strong enough to throw her out.

I don’t know how they did it. She is proof that it works. But at such a cost and risk.


#7

Well, you have the built in obstacles of disability to prevent him from moving out.

If he somehow manages to do it himself though, that’s really good. He’s so young; it takes time. You could even suggest a CBRS worker to help him meet his goals and get you out of that loop.

If he could live in his own Section-8 apartment in a decent neighborhood, what are your concerns?

My concerns would be medical treatment, daily functioning with food/ water and hygiene, and healthy social life that does not involve alcohol or illicit drugs.


#8

I know exactly how you feel jmarie 1067. A few years ago my daughter who has sz became very defiant, starting stealing, hanging around with her boyfriend at the time who was a drug dealer and thief. She would not give him up and kept bringing him to our home and after several warnings, I told her she had to move out (Boy did I cry when she did). It was hard and I was in prayer for her the whole time. She was gone a few months, moved back in and never wanted to move out again. She did learn there was no way I would let her bring someone like that around, but still has some behavior problems. But that did solve that problem. I take little steps at a time and I know it is not easy. We also are still fighting for SSI. Love and Hugs to you and your son.


#9

By the way jmarie. I will stress having a child move out is a very personal choice and am not necessarily recommending it to anyone, but it did work for me.


#10

My son also wants to go to Las Vegas to make his fortunes. Or Paraguay or Amsterdam, or Colorado. I know exactly how you feel. You sound like you are doing all you can and listening to him.

I am going to try anything I can to keep him on depot injections because without them he might not live.

I’m reading “No one cares about Crazy People” by Ron Powers. It’s a good book and I would recommend it. It has answered some questions I have about psychosis and the brain and the history of mental illness.

I’m glad you are here and I hope you find some answers and support. I know I have felt safe to share here. God bless.


#11

Oh my God! It’s has if you were writing about my son. He moved 3,000 miles away and some how he survived. Nothing was stopping him. He wanted far away from his family as he put it. If it wasn’t for a girl he met while gone he never would of survived. I barely did myself.
Then just as quick as he left 3 years later he called and said I’ll be at the airport later today. I found him hours later after he landed in a corner of the airport extremely paranoid.
Within 6 months of being home he was in 2 horrible accidents that should of taken his life.
My son is a grown man and I know he didn’t do anything to cause this disease whether it be Sz or CTE but when is it MY life. When do we get to live? He won’t comply to anything either . He will fight me tooth and naiil.i just want and need some peace but I can’t find it anywhere.
He has never done anything directly to me but he thinks I’m in on their side ( as he puts it) .that scares me to death. Is that the way most of them are?
I just need to know when I lay my head down he is in a safe place and the rest of my family and I are as well.
One last thing. Can anyone tell me if it is worth getting guardianship? Will I have a say as to whether he takes his meds and is hospitalized?


#12

In my case, Misty, after my son received the involuntary medication order while hospitalized, I had the choice to add involuntary medication to the guardianship order. This has everything to do with the laws in the state you live in related to involuntary medication. You could talk with an attorney about this related to your state. Most of the time, they will speak with you before you retain them for this and can answer questions.

Because of our relationship challenges, I opted to not take on that role. I am the only person in his life to be a caregiver, and after much thought and consideration, we decided it is not a good role for me to police his actions. I am trying to be the place he will hopefully return to if he goes AWOL. My son is compliant with medication currently…albeit a very imperfect science for him. I feel this is short lived, however.

Such a sad and sorry situation for all of us, truly!


#13

Having guardianship will allow you to relay medical information and acquire medical information if you use it and press. It will not guarantee that they will follow that advice or keep you informed of changes on his care on my sons case.

I’m asking for them to put Him on an injection but so far it is oral meds and they are not requiring him to take recovery classes. It’s as though I have to repeat myself as to the reasons why.

If he were to leave home it would be easier to act on his behalf with guardianship but the constant begging for money is terrible. If I knew of someone I could trust to take the job, I’d change it in a heartbeat.


#14

The county attorney (who is guardian for an individual) said we cannot force them to take medication. I’m on Kentucky and there was a law recently brought forth to try to change that.


#15

For me it was absolutely 1000% worth getting guardianship and my son would not be in remission of all of his most serious symptoms of disorganized schizophrenia if I had not done so, I took the bull by the horns and got control of his entire life, medical, money, moved him in with me, controlled everything in the beginning, left almost nothing up to him while he was very ill. I dispensed meds and cigarettes and meals and everything, it sounds insane when I type it out but it made things work toward the goal of him getting better. He hated me in the beginning and said so often but I ignored it as best I could and cried myself to sleep a lot. Before I got guardianship everything was so out of control, he wandered the streets at night was always being picked up by the police for vagrancy or some other thing-. He couldn’t form full coherent sentences, he was sick often with pneumonia or strep from exposure and almost died from both and he did drugs. I was such a nervous wreck that my health went into the dumpster and I ended up on disability myself, My own disability and inability to maintain full time work was a blessing in disguise because had I not been dismissed from work I probably couldn’t have performed the guardianship the way it needed to be done for my son. We started off seeing his pdoc at least 2 or 3 times a week when he wasn’t hospitalized. I threw my entire life into his care, upkeep and compliance, if he fought me on it which he did at first I just withheld cigarettes or coffee or sweets or all 3 (and I never gave him cash in the beginning)- and eventually he would comply. He slept a LOT and I let him. He did little at first and I let him. He seldom bathed or changed clothes and I let him. He mouthed off daily and raged at me and I ignored him. We had CRT at our house at least twice a week. I almost got evicted because he wouldn’t stop climbing in the dumpsters looking for “treasures” Nothing was ever easy. Eventually, it all began to turn around slowly and when it did the immense gratitude and relief I felt was something I will never be able to fully express. When I worked and felt my own health and mental stability failing because of the immense stress I felt everyday I would feel like “when would I get a break?” but, what I saw my son go through and the way I felt personally that he was my responsibility at any age if he was totally unable to properly care for himself, I decided this was what I was suppose to do, I would do it for either one of my kids, there is no one else (that loves them) that will pick up the slack for them if they are seriously disabled.

Today my son is so much better and while we still live together - we share many responsibilities and we get along really well together and I can trust him to take his medicine on time every day. My attitude is ‘I won the lottery’ here-but through a lot of dedicated hard emotional work, Do I think he would stay well (and sober) if left completely to his own devices permanently? No I don’t and neither does his doctors. The redirection, and support I give him everyday I think keeps him on a steady even keel. I do think he can fare well enough on his own for short times, a couple days here and there and no one can predict the future. It is my belief that the healing never really ends. I still see small improvements every once in awhile. Years after the initial breakthroughs. That is my story for what it’s worth. I will always think guardianship is part of the answer in the most serious cases. It worked for us. Now as I posted earlier I am happily planning an extended weekend trip to see my best friend from high school for some R&R. My son and I both are excited and positive about it. He is excited to be trusted with Independence and I to get away by myself. A few years ago I never thought it would be a possibility that I would have any of my own life back again. Now it is. :slight_smile:


#16

@Hereandhere, your comment is on the mark, some of it anyway, for me. I was wondering how old he is and also the Vegas thing sounds really scary to me!


#17

My son would be shit outta luck if he wanted to move to Vegas (oh good Lord!) because I wouldn’t be able to help him financially ;( and neither could his dad. In fact, he lives with his dad in a house they bought together. My son has had one job that lasted four months I think and he saved every penny! That was “Before” … he was diagnosed 2013 pSz when he was 25. But as we know each experience is unique. My son never put us in the position you’re in and my heart hurts for you AND for your son. I’m an over thinker and a chronic worry wart LOL! And I torture myself with more what ifs than … ugh it’s just awful! I think a lot about your situation. I have no idea what to tell you. I wish I could. IF my son decided he would rather go live somewhere else I would be heartbroken. He wouldn’t go anyway. He never goes anywhere, cannot manage his money now, and on and on …well, I’m rambling. But so that you understand, you are not alone. This is such a good forum.


#18

I feel as though you wrote my entire thoughts. My son, who is 41, was most recently diagnosed bi-polar, paranoid schizophrenia after 10-12 years of substance abuse. Has been abusing Clonazapam for over 10 years. He hasn’t worked in 9 years and is totally dependent on me for his entire well-being. I am 64 and 1 year from retirement and feel as though I just got a life jail sentence knowing that I will have to take care of him the rest of his or my life. I pray that God will take me now because I can’t take anymore. We have no family, and our friends keep their distance because, number one, they are afraid and number 2, they just don’t understand.

I am terrified of my son’s episodes. He hears voices that tell him people are trying to kill him. I just took a new apartment and the police were there already on our first day. My neighbors called the police on him because of his erratic behavior.

I have been struggling to get him in an intensive out patient program but every where we go they tell us we’re not in network with his insurance or doctors arent’ taking new patients. Really? We’ve been searching for over a month now and still nothing. No in patient because they feel he is not a danger to himself or others. Although he needs in patient, no one will listen to me. He cons the doctors and nurses, knows all the right things to say/do to stay out. He has been on regulated meds for about two weeks now, but only because I give him his pills as needed and hide the rest.

I have no life any longer and I hate to feel selfish. I am looking for support group meetings in my area but they only meet twice a month at night, when I can’t leave him alone. I feel so alone and helpless. I so see a social worker and his advice is to read, crochet, etc. Really? How can I take time for myself when I’m a 24/7 caretaker of a grown adult?

Not sure why I’m out here but I do know now that after reading so many other people’s posts, there are so many people in my shoes, struggling to help their children and you feel hopeless, helpless, abandoned.

I pray for all of us.


#19

My son isn’t really participating like he should, but he is part of an ICT program ran by our county. They only accept Medicaid, so we had to jump through the hoops to get him on that, but we got through that.

Maybe see if your area has one. Ours isn’t advertised, so I had no idea it existed or what it offered.
They can also help get him into the hospital if they think it’s needed.

This is a link so you can see what we have here - maybe you can find something similar in your area:
http://www.chesterfield.gov/MHSS.aspx?id=8590045211

I also struggle with going to the support meetings at night. I have one here that I love, but it’s the first & third Tuesdays each month, at night, and I hate to leave him then. And, when he’s stable enough for me to go, I don’t feel like I need it.

This is a great place to get support though.


#20

Thank you Just wondering how things worked out leaving your son.?