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.
