I really miss my son. The son I use to know. The son that use to laugh, smile and enjoy life. Some days I can’t handle this situation. My heart is broken. All of the dreams i had for him seem so unreachable. I wish I could make this hurt go away. I don’t like the person he has become, so flat and withdrawn. I really miss my son.
I’m so sorry this has happened to you. I want my son back too. I know how you feel. It’s beyond painful. You are not alone. My thoughts are with you.
I too understand, you are really not alone, lots of help and support on here for you. Thinking of you.
And your son is there, the part you don’t like is the illness, but somewhere, underneath it all, is your son and he is dealing with a really terrible situation.
At one time all I could think was “this is not my son” this is not my son" at some point, after one of those “glimpse of real son” moments occurred, I found some peace. For a little while.
Sucks to be them, sucks to be us.
I agree he’s in there.
My son on the right med and him either off meds or on a med that doesn’t work well is like night and day.
When he’s on the right meds, his sense of humor comes back, he enjoys some things, he has some hope for the future. I don’t know that he’ll ever be the person I thought he’d be when he was a happy little kid but things are OK right now.
However, my son had his first psychotic break at 15 and we started seeing signs of anxiety as early as 2nd or 3rd grade - and he’s 28 now. We’ve had a long time to make this our new normal, lower our expectations, and be happy with the smallest things he can manage to do.
Yes, your son is there, obscured by the illness.
If he receives good treatment or his illness goes into remission somehow, you will see him. A slightly different version of the person you love so much.
I don’t know how to put this into words: during the worst times, all I saw was illness because we had to deal with so much dysfunction and safety issues. When treatment finally happened, I was able to look back and easily see all the moments of the real person who was always there the whole time.
Plus, the age when this disease hits is awful because most of us would have had to give up our personal dreams anyway while our newly adult children followed their own…
It is heartbreaking and we all cry…a lot in the beginning. Yes dreams may be shattered, but I chose a new one…every day and every situation has become a struggle but he goes on and doesn’t quit. For me that goal beats a fancy job, nice car or big house. And once in a while I get to see the child I knew. That is indeed precious. Cry a little but hang in there. He needs you more now than ever before.
I don’t have a big house or expensive car by choice, but I have a very good job plus I work as a freelancer.
A few other mothers here have jobs in the same field I’m in - IT.
I’ve been at the same company a long time and I’ve been lucky that they’ve always worked with me.
I guess it doesn’t hurt that I’m technically on call 24/7 and have to leave the country to not get called on vacation - but they also let me work from home a lot and don’t say a word about how many appointments I have.
I’m not knocking anyone who can’t juggle a mentally ill family member and a full-time job, because we’re all different, but I did want to mention that life doesn’t have to completely stop. You just have to choose what you’re willing to sacrifice and what you’re not.
And, to be fair, work is my escape - my job comes with high pressure, but it’s also the only thing that keeps me sane.
Thanks everyone for your encouraging words.
SLW…I meant for him my dreams changed; he wont have those things. Well, not on SSDI anyway Sorry if I worded that wrong.
However, good point because the disease did impact my choices too. My husband is the main support, so I can work only part time. But I traded corporate world for a more flexible, no benefit less pay jobs.
I hear you though, sometimes our work is an escape and the challenge keeps us sane.
And, I’m sorry I misread.
I, as well, miss my son who was happy, sociable, had many friends, and dreams of his own for his future. When his symptoms appeared at age twenty-three, I was dazed. I thought that there would be a solution for his condition. When I realized that it was a life-long condition, I went into a period of grief, remembering how my son used to be. Fifteen years have passed and I no longer look in the past, I stay in the present, I think of my son’s future and what his limitations are and what he is capable of accomplishing. I sometimes remind myself that when I look at my son, part of what I see is his condition, but I can also still see his personality. He has been through a lot and has faced many challenges due to his condition: stigma, side-effects from his medication, and living with his illness. I try to put myself in his shoes and know what a brave person he is. I wish the best for you and your son.
We all have thought that, especially early on. Accepting our situation helps them also. There are a lot with his illness, I don’t know that I will ever get used to, the messes for one.
Yesterday he was stretched out on the window seat asleep with his back side showing. I grabbed a soft blanket and covered him up. He smiled just like he used to as a child when I would tuck him in at night.
How many parents have a second chance to parent? I am much more firm now and find myself saying no a LOT. They really do need us more than we realize.
You will find that doing things for yourself occasionally will give you the energy to do more for him. God bless you and your son.
It makes my heart hurt to read these words. I know the feeling well. What makes it harder is to hear my son say these defeated words. I try to look at it from his perspective. Whatever hurt and pain this illness causes me, it must be far worse for him. He is my hero. Any day that he survives this, is a day he has fought and won. I hate what the illness has done to my son, but he will always be my son and I will never give up hope.
Stay strong. There has got to be better days ahead.
You took the words right out of my mouth! I want to give you some hope though. One year ago my son was catatonic and barely able to communicate. I feared that we would never see the son we used to know again, and all my dreams for his future were shattered with his diagnosis. It’s been a long year of doctor’s visits, therapist visits, hospitalizations (sadly) and learning to be a caregiver for someone with this illness. But he has slowly regained much of his personality and learned to manage his illness. Just last week, I was amazed when I saw a smile that reminded me – He’s still there!! Two weeks ago his doctor took him off one of the meds that was supposed to be helping with hallucinations. My son explained that he couldn’t tell if it helped at all, because he still has the hallucinations (but through therapy he has learned to manage them). The medication was producing side effects (eyes rolling, tongue thrusting), and the doctor felt that if was best for him to go off of it. Anyway, once he came off that medication, his old personality came shining through. So, our loved ones are still there, but something is keeping their personalities inside. I know the medications are necessary to treat the illness, but some might be better than others at not suppressing their personalities. He has also been able to start back with his schooling – at a very slow pace, but at least it’s progress. I’m beginning to dream about his future again, but with a new filter that includes life with this illness. ALSO, something that helped me deal with this was attending NAMI Family to Family classes. I highly recommend them!! They are FREE training for family members who care for loved ones with mental illnesses. You can look on the NAMI website for classes in your area. I learned so much more from that class, than I ever would have learned from the doctor, PLUS I met other families in my area dealing with the exact same thing. It made me feel like I’m not alone in this, and now I have a support network close by.
My son is 18 this is his 4th admission to hosputal he spent 7 weeks in an acute ward hes now been moved 100 miles away to a picu unit as he got worse. Ive been to visìt the start he was to violent for me to see him but now 5mins at a time but he says he hates me i put him there why would i do that he spits trys to lash out at me and he wants to go back on the ward thinking hes not ill. This illness robs them off there mind its so hard to watch a loving thoughtfull bright happy lad be changed in so many ways. It breaks my heart.
My son spat at me when we were trying to get him onto medication - made me feel like the scz was turning him into something from a horror movie. Was an awful feeling.
How old is your son has he been diagnosed for long? This is such a sad journey my son is on an intensive care unit hes just started to turn a small corner. He couldnt even feed himself hes got rope marks round his neck so hard to find parent grtoups out there
He is 35 now, his version of scz is the super gradual kind. He finally lost his battle for sanity at age 30. We got him diagnosed officially about a year later. We were so clueless, we had no idea what was going on. The first of the changes started when he in high school, more obvious in college (looking back) and finally psychosis took over his daily life.
I feel so badly for you and your son, when they are so severe like that at such a young age - it is just awful for everyone.
This is a good group with people from all around the world. Have you checked with NAMI for one of their support groups near you?
Oh I’m so glad I found you all here. I have had similar thoughts. The intensity of them comes and goes like waves of grief. But I relate to the other posts here too. I admire my son like no other ; the terrible things he has to deal with over the years. Including betrayal from those we thought we could rely on for support. It’s true that at his most unwell he has behaved in ways I know were way short of his values when well. But when you are out of touch with reality and think your own life is at risk who knows how any of us would behave?
It changes us forever that’s for sure. And I have learned to appreciate the small things and the kindness of those who have understood and stood by us.
On the right meds, my son is fantastic company.
Of course what he, and what I, imagined for his life has long gone. I still often cry 9 years on. But life is too short and precious to grieve or rage about it every day. I try to remember this.