Our Family feels helpless

[herzjm]

Hi...I just found this site and am relieved and hopeful to talk with others who are experiencing the same issues we are. My brother who is 22 was diagnosed bi-Polar about a year and a half ago (after being misdiagnosed with depression before that). He was hospitalized and prescribed lithium. He was doing so well since then and we were so hopeful for him. And then he stopped taking his meds because he didn't like the side effects (his hands shake pretty bad and he gets extremely self-conscious of this). He stopped going to his doctor and to work. He lives with my parents and became very agitated and down right mean. I am scared for my mom who is often alone with him for days at a time. What can we do? He is an adult and basically we are told that nothing can be done until he hurts himself or someone else? What kind of system is this?!!!

My brother is now in a hospital in Michigan after taking off for 2 days and being picked up by the police for "acting crazy" in a conveince store. They are admitting him for 3 days which they can do by law. But then what? My mother and father are besides themselves with worry and guilt. Can nothing more be done? Must we wait for him to hurt someone or himself truly?!! This is crazy....there must be more we can do. Any ideas or feedback would be truly appreciated.

J

[Mark]

This is crazy....there must be more we can do.

This is a perennial issue that family members go through. It's always painful, and I never feel I know how to talk about it properly.

What you've been hearing about not being able to force treatment on your brother is true though. As an adult, he is free to comply with treatment recommendations or not, and if he doesn't the chances are good that he will decompensate and become manic and/or psychotic, it sounds like. This will cause his judgement to go out the window and he may take foolhardy risks while psychotic. If he causes enough commotion, he may be arrested and taken to jail or, if he is lucky, to a hospital. Our society is at a very bad point in time with regard to public mental health care, and many people do end up in jail when they should really be hospitalized - but society doesn't want to pay for hospitals, and does want to pay for jails so they end up in jail. Until he breaks the law or frightens someone who complains to the police, he will be free to be as crazy as he may become.

This is in many ways a cruel outcome, but it is based on the idea of individual rights, which is very important to many Americans who don't like the idea that the state could force them to take medications or to comply with some treatment arbitrarily.

Most states have some variation of a multi-day hold - where if someone ends up in the hospital, doctors can force them to stay for three days or so (and longer if they go before a judge who agrees to extend the hold) during which time they can try treatments to see if they can reduce the psychosis or other significant mental problem. If the hospital is firing on all cylinders, it will discharge the patient to some sort of follow on care - but again, it is up to the patient to go to that care or not once they are discharged.

People do get committed to state hosptials for extended periods of time (months and years) still, but it is increasingly rare that this occurs, and when it does occur, it is generally in response to the most extreme cases that cannot be "managed" in any other way.

Though there aren't any easy legal ways to force treatment compliance, you can do what you can do to stay in contact with your brother, and continually urge him to go back on his medicine, pointing out that his behavior is erratic or psychotic, and trying to help him understand how the medication helps. You can arrange treatment appointments with him and help see that he goes to them. You can express your love and concern. But you can't force him to do something against his will even if it is in his best interests.

Hope this helps.

Mark

[donnytree]

We are going through the same thing with my 30 year old sister. I felt the same way when I found this forum, other people going through the same thing! Unfortunately my sister has been in and out of the hospital for the last 10 years, and unfortunately, the system sucks. There is nothing we can do but watch them ruin their lives and the lives of our families, and hope that the next time they are in the hospital they actually get stabilized and stay on their meds - until the next time they decide they don't like the side effects and go off them.

There is something I heard about, but you have to do it when they are in the hospital and I think its temporary, but your parents I think can get temporary decision-making power for your brother and maybe get him into a treatment center? Anyway, I don't know, I am having the same frustrations as you. And it is impossible to find any kind of help. Your brother is an adult and therefore gets to decide for himself, even if he doesn't know whats best for him. There should be more protection for mentally disabled adults and more aid for the families of them who aren't willing to just give up on them. I have found some treatment centers if you're interested.

If you want to talk more, I think it helps. But unfortunately, unless you can convince your brother to get help there is nothing, really nothing, you can do. With my sister I just remind her everytime I talk to her that she is not doing well and needs to get back on her meds. I feel bad cause I dont want to alienate her but I havent found anything else I can do.

Good luck, and hang in there, just remember to live your own life and be happy, and hopefully your brother will come back around.

[Natalie]

Hi-

Donnytree is correct. Parents or other interested parties can be appointed legal guardians or conservators (different terms in different states) of people who are judged to be unable to make medical or financial decisions for themselves. The problem is that is typically somewhat difficult to do- depending on the state and the relevant laws, the responsible parties usually need to pay an attorney, and will have to go to court and appear before a judge.

Even then, if the conservator/guardian makes decisions, and forces treatment, it is often hard to get the person to agree to take medicine or show up for the required appointments on a continuous basis (even though they are supposed to). So, they are back at square one, and out a lot of time and money.

Not a more positive picture, but just wanted to throw that out there.

I completely understand and sympathize with your frustration. Like Mark, I am so very upset at how poorly the mental health care system works right now. We have done a huge disservice (and continue to do so) for a large group of people and their families and friends.

[herzjm]

Thank you for your responses. Unfortunately, my brother was released from the hospital in Michigan after the 3 days they could legally keep him. My parents had driven all the way there to try to talk with him to no avail. He said he would follow them home and then lost them around Gary, IN. No one has heard from him since. This is sooo scary for us. He is only 22 years old and for the most part has lived a very sheltered life. The possibilities of what may happen to him just make me feel sick. If there are any support groups or further recommendations anyone can give I would really appreciate it. We are not going to give up on him...when and if he comes home. I just can't reiterate enough how utterly flabergasted I am by how the system works right now. If John had a physical illness he would be forced to stay in a hospital and get treated, but because his illness is mental and not "seen" right away there is nothing anyone can do?! This is sooo completely messed up. We need to change this before further destruction is done to mental ill people and the families who are fighting to help them.

[herzjm]

Hi. Thanks so much for your response. I wish there was a solution to this. I am beginning to see that there is not. Do you and your family go to any support groups to deal with this? What treatment centers have you found? Any info you have would be great. My family and I are at a loss as to what we can do. We are absolutely not going to give up though. How long has your sister been coping with bipolar?

[Guest ASchwartz]

Hi Donnytree, Herjm and others,

I would suggest you try NAMI and FAMI, both of which are for people with one of the severe mental illnesses and their families. First, go to NAMI, and that stands for :National Alliance for the Mentally Ill. I believe you can find them at: www.nami.com/ However, if not, just do a search. They are easy to find. Once on the site, you will find FAMI, "Family Alliance for the Mentally Ill." They have lists of support groups all across the nation.

I would suggest that you also try "Fountain House." While they are located in New York City, they can direct you to resources all across the nation.

These self help organizations are excellent and are a response to the lack of help and support for the mentally ill and for their families.

Please let me know how you do with these resources.

Allan