“They” say the worst part for parents of children with mental illness is that our constant grief for the loss of our children isn’t acknowledged. Not only do we suffer for the loss of what our children were, but for the mental pain our children endure.
As Hereandhere pointed out, you have a real solid chance that this will be a first and only episode.
If we could, many of us would bring you a casserole, sit with you and hold your hand. Try to feel us in spirit if you can. You really aren’t as alone as this feels, we are here.
Thanks hope. If ANYBODY deserves a few sympathy cards and a few casseroles, it is a mom who just found out her beautiful first born baby with ten fingers and ten toes is sz. To me it feels like my life is over. Our local NAMI doesn’t have a meeting for awhile and so far I’ve gotten very little face to face support so I’m very raw and fresh with all my emotions and I am SO GRATEFUL to be able to express myself here in a safe, understanding place. Thank you to all who are reading. I appreciate all the advice, encouragement, book recommendations, etc. This is the last forum I would have ever imagined I’d be turning to. Life can really pull the rug out from us, can’t it?
One of the biggest points of frustration is that my son will not sign the HIPAA release so unless he is present, no one will tell me anything specific. It is beyond frustrating. At the discharge meeting today I am going to stress to my son, in front of his psych and therapist, that if I am to provide a home for him, I have to be in the loop. Period. If he is himself, he will get it and possibly sign, if he is in his ‘I got this’ delusion, he won’t.
Yeah maybe if there were a signal phrase that I used, it would be a gentle reminder to him that what he is saying is not real. I like that. A good place to start. Thank you.
Not sure about a waiting period. All I know for sure is that his hospital team is contacting EASA (Early Intervention Support Alliance) today and I will confirm at the discharge meeting. I noticed on the list of services, they also provide dual diagnosis and drug treatment. So we’ll see I guess. I just know that my son needs this program like he has never needed anything before in his life.
I agree. Still don’t know. Tomorrow he starts intensive outpatient therapy through our HMO and last I knew the LCSW was putting a call into EASA. He signed a HIPAA release for them to see his records so all fingers are still crossed. He is doing REALLY well since being home. For now, I have my son back.
OMG yes. We actually had a real conversation today. First one in months.
He just set out for the library, in search of books on the fringe topics he continues to be obsessed with… but for now he has his brain back while he searches…
I know this is a long, hard road. We are just at the very beginning of it.
Thanks for the encouraging words. I am already learning to just take the good when it happens. I realized while he was in the hospital that my happiness can’t be dependent on what kind of day my son is having. I say that like it’s easy to do. It isn’t. Everyone here knows that. But that is the goal.
I too am relatively new to this new reality. I agree it would be nice if our happiness wasn’t dependent on whatever kind of day our sons are having, but a friend shared a phrase with me that I now believe to be true. It is: “We can only be as happy as our saddest child.” I have to be realistic that I will always carry this sadness for my saddest child, but hopefully I will become stronger and more accepting of this pain. I’m sorry if this sounds negative or depressing. I guess I’m trying to find a way to reach acceptance.
Yeah that is pretty much the reality. They are our flesh and blood.
My son just returned from his first day of IOT (intensive outpatient therapy) after being discharged from hospital and he is agitated. So I’m thinking oh dear god what happened? He won’t talk to me for now but I know he is trying to get himself out of the rotten mood he is in.
Do I go back into the depths of despair or do I think, maybe he can work through whatever is bothering him?
Time will tell but I find myself more willing to trust that maybe, just maybe he can work through it.
Today, after I dropped him off to his IOT, I felt this enormous wave of relief. I felt that finally, FINALLY, my son is getting the help that he needs.
I just have to trust that he will get the help he needs. He has the desire to further his life. The anti-psychotic meds have helped him get his brain back. The rest is up to him.
I’m learning how easily any kind of stress impacts stability. A first day of IOT is probably a good example of this kind of stress. I’m trying hard to not go into the “depths of despair” when these changes/setbacks happen. We have to believe things will get better. There will be good days and there will be bad days, even with med compliance. Time heals.
It is so day by day. Sometimes hour by hour, or even moment by moment. I know my son is in good hands. He is being given an opportunity to possibly change course here. He has to work at it for sure. But the opportunity is there. I really do think he knows this at some level.
When it comes to mental health, I am already learning that it takes time, lots and lots of time. Breathe. Live. Laugh. Love. That is what I try to do in the meantime.
Hi JooJoo… yes, we know EXACTLY how you feel. I can honestly say that this is a situation where I know I can say, “I know how you feel,” and those words are true! Not a hypocrite, not a fake attempt to console, this is real! My son, also my special angel, first born, beautiful and perfect in every way, named Nathan which means gift from God, born on Sunday … “Monday’s child is fair of face. Tuesday’s child is full of grace…but the child that’s born on the Sabbath day is fair and wise and good and gay” one of my favorite poems, and maybe it’s corny but this really is how I feel about my son and I suspect you do too about your beautiful boy …so you’re new and raw. I know it. Do not despair but I will be brutally honest, your feelings now will be exactly the same four years from now and forty years from now. The sadness never ever goes away and unless you are already clinically depressed, antidepressant medication will not help because you’re not depressed. You are sad. Believe me, this is true. You will learn to cope with this crushing sadness and you will cry when nobody is around. You’ll cry in the car. Music takes on a life of its own. If you never cared much for poetry, well, now you will. Your tears will be yours and yours alone. You won’t want anyone to take them away. If you are religious you may turn away or you may become very spiritual as you try to find meaning or you might become so angry at your God that you’ll scream and curse and then feel guilty. But you will love your son more than ever! So brace yourself. You will think you can explain this feeling to others but they will never truly get it no matter how much they truly care about you, and love you and love your son. Nobody can understand this very unique experience except for other mothers who have an adult child with a severe mental illness. Schizophrenia is the most severe of the severe mental illnesses. So God bless you, Mama. God bless your beautiful boy. Cry as much as you want and if someone says cruel things like, “but your son is alive! There are mothers whose sons have DIED!” Don’t feel ashamed. To you it feels like a death. I may sound very black and white, as if THIS IS HOW IT WILL BE AND I SPEAK TRUTH, SO DON’T BOTHER! Well, you’ll see what I mean. It’s just so very unique. Try to keep your head above water. There isn’t much in the way of counseling that will help YOU. As I say, antidepressants might not help. But you will find something that comforts you. You’ll cry less and less maybe, but this is an enduring sadness. We understand! You’re a good mother.
It’s so difficult. My husband died 12 years ago, so like you I am dealing with my only child by myself, but with the fantastic help from his care coordinator. Like you my son has told me that I am not his mum, but the devil, that I shouldn’t have had him , that I am not his mum, just an alien. He has also told me that he loves me so very , very much. And that he no longer wants me in his life.
What keeps me going is that one day, he will take his meds regularly, I keep photos of him at good times, and remind myself that we had wonderful happy times together, and that he is still the same lovely guy , but has been overtaken by a terrible life changing illness.
OMG what a wonderful post. Thank you. As new and raw as I am I have already learned that happiness is fleeting so enjoy it every time it washes over. I have such a new appreciation for the little things. One day at a time and appreciate every moment that is calm, content, happy, without conflict or turmoil.
I have no idea how my son will fare in his recovery. I have little control over that. He has some control but not total control as we still don’t know the severity of his illness.
With the help of some very wise people on this forum, I have already learned the limitations of what I can do. I support. I love. I encourage.
Enjoy it, don’t make yourself think you have to remember it can get bad again, just enjoy it.