So sad your son is back I hospital but thank God he is getting the help he needs. It will take time for him to become more stable, but stay hopeful. My prayers and hugs are going your way!
1 Like
Thank you - this is a very rough road to travel. Now we just have to get his court stuff straightened out. Fingers crossed. How is your son doing? I hope he is showing signs of improvement. You have done everything you can. That is for sure.
1 Like
Getting excited - I will go on vacation for a WHOLE WEEK. My son says he will be fine, with enough food in the fridge and pantry.
He might an occasional rough time one or two days, but I am feeling more comfortable that he will be okay - meaning - he will be safe, everybody else will be safe, and he wonāt wreck the house.
7 Likes
Have a fun time and don t worry about your son. I think they can hold it together sometimes better than we think. I went on vacation last winter for 5 and a half days and my son had a few bad episodes but did ok. We were both really happy to see each other when I got home. Then we went right back to our same old routine.
3 Likes
Having a bad night. Itās so hard to watch the world go on when my sonās world is so stagnant.
He is supposed to be doing what his peers are doing. Heās supposed to be ready to start his senior year of college. Heās supposed to be out drinking beers with friends Heās supposed to be bringing his girlfriend over for dinner.
Instead, my intelligent, handsome, witty, hardworking, and athletic son has been reduced to a paranoid shell.
How will we survive this heartbreak? Seriously, I donāt get it. This is for the rest of his life? For the rest of our lives?
I know thereās another thread about guilt, but jeez, the guilt I have for bringing my poor child into this world is beyondā¦
And this is after 9 months of Invega Sustenna. Itās just so sad that this can happen to an innocent person.
4 Likes
So sorry you are having a bad night. I understand as I have felt just that way. I sometimes have trouble looking at young men his age that are out and about with girlfriends and I even feel sad going to sporting events ,seeing all the young men my sons age at their peak ,when my son is afraid to go out and stays in his apt with his blinds shut and I am the only person that goes to visit him. It is so unbearably sad, but I finally realize there is nothing I can do to change this right now. I can only make my son feel loved and comfortable. Remember you are not alone and it is no ones fault they got this disease. No one understands like the ones one this forum. Maybe our sons lives will get better as they get older, there are some great success stories out there.
3 Likes
Iām sad today also especially after reading the articles on schizophreniaās connection with stress on the placenta during pregnancy. Does it really have to go back to the mother as culprit again???
This is such a terrible plight. But today I spoke to an old dear friend whose son is also sick with this illness. She is further on the NAMI path and reported that her son and many NAMI families are experiencing real success in rebuilding their lives and witnessing their adult children grow and move toward more joy.
This illness has taught me to thoroughly enjoy my sonās moments of peace, sharing joys, and successes.
It makes me realize the deeper meaning of empathy, compassion and acceptance, which seems to run so counter to todayās values of humans as money making machines.
I hope for my son to love himself as he is, and that he grows in self compassion and compassion for others, patience and kindness. He is so much better at admitting to error than he was before his illness. We live in calmness and gentleness and that is such a relief. Hopefully it will help good things to come his way, and will offer a path forward toward building his life.
Good wishes to you and your son. Sending a hug.
3 Likes
yes, the new empathy and compassion I feel now could be considered a small silver lining. My son is also so strong to deal with all that is going on in is brain and I am proud of him for his insight into his disease.
2 Likes
Thank you Irene and Presence, for your kind and understanding words. Nobody can really understand the pain this illness causes unless they too have a loved one afflicted with it.
The pain we feel for our children is like no other.
4 Likes
Nick, the young man with scz who taught Peer to Peer always stressed that initially its 90% meds, as time goes by and they work on recovery its 90% therapy training and working on life skills.
His version didnāt respond to anything until Clozapine and some other support meds. It took him years of cognitive behavior therapy. It starts one task at a time.
The truly lucky ones seem to have the instant response to meds as opposed to those who have to slowly drag themselves back to functioning.
5 Likes
Hello day-by-day,
So many of us here living with sadness of our family members. My younger daughter went to dinner at her in-laws (who know about her brother.) Really inconsiderate dinner conversation about mentally ill people and serial killers.
My sons assualt, you can read about in my activity, it is one of my first post. Like you commented, a wonderful young man with a great future completely gone.
Take care all, AnnieNorCal
7 Likes
Iām sorry. Did he do well at first on invega? I totally can relate to having a son that was on track for success and now derailed. Before we figured out what this was I was reading a site that was about estranged children (another heart breaker). One woman even lived next to her son who would have nothing to do with her. She just said enjoy the other people in your life. I work with A LOT of people in their 20s so Iāve tried to develop relationships with them and enjoy their successes. I certainly know what you mean however, I think daily I see a young man who looks like my son and I think why couldnāt my son be like that.
2 Likes
So many of us have the same story. Right children whose lives took a different direction because of this illness. My daughter graduated college, and I remember her re diving her diploma and crying. I think she knew her life should go in a different direction.
It is what it is. I just pray for quiet days.
2 Likes
Hi DianeR. I know your son just started on Invega Sustenna, and thatās a great thing. I hope hope hope it really works for him, and gives him a chance at a good life.
My son started on 156 mg last September, but he was then re-hospitalized again in March due to some extreme symptoms. Since then, heās been on 234 mg (the highest dosage). I think my son is just really unlucky because he still experiences paranoia on an almost daily basis, and any kind of stress sets off his old delusions and weird thoughts. For the last couple days, as itās the end of the injection month, heās just been lying on the couch, silently consumed by whatever is going on in his head. Heās in a bad phase right now. So, unfortunately for my son, the med isnāt doing what it does for other people, atleast not with any consistency. Itās pretty much been like this since the start.
However, and this is a very important however, the progress our son has made during the last 9 months is huge. Our son was extremely ill before he started the Invega Sustenna. Heās still ill, and he probably always will be, but the difference is night and day. When heās going through a decent phase or cycle, he wants to socialize with people and he doesnāt appear internally distracted. Heās in a bad way right now, but thatās not at all how it always is. Just last weekend, he went to a family function and seemed to enjoy it.
Things are always changing, as his illness progresses, so we donāt know how heāll look in a month, a year, or 5 years from now. Our son is only about to turn 22 and this all just started when he was about 18, so heās still in the developmental phase of this illness.
Our next step will have to be Clozapine. Itās a long story, but taking oral pills are rolled up in some delusional thinking, so the clozapine will have to start during a hospitalization.
The bottom line is, weāre really fortunate that our son is on the Invega Sustenna, even if the results arenāt optimal. For many, like our son, this is a very difficult disease to treat.
1 Like
@Day-by-Day - I hope he has a good weekend this weekend. I am hoping for a low stress weekend myself. May took a toll on me. I think I remember you story about the pills. I hope the Clozapine will help when you get to that point. It seems to have helped others here on this site.
1 Like
Thinking of all of us who have family members who suffer so terribly from this horrific illness. Our son is 27, became ill at 19 during his first year of college. We have watched our brilliant, funny, happy, talented and popular child become a shell of his former self. He has been non-med compliant for years until this past December when we was involuntarily hospitalized and started on Invega Sustenna. He was also hospitalized in April of this year voluntarily. He is doing better and is now on 234 mg, but I donāt think he will ever be āwell.ā He rarely showers or brushes his teeth and doesnāt like to leave the house. We just applied for disability for him. Not only is this disease heart-breaking, it is financially devastating.
I just try to hold onto hope that he will have some recovery the longer he is on meds and with therapy. Like my therapist says, āItās not the life you wanted and envisioned for him but maybe he can still have a good life.ā
Hoping you all have a good weekend.
5 Likes
Hi, feeling so sad tonite about all of our children with sz. Today my son looked filthy and was wearing a winter hat and shorts and probably hasnāt t showered or brushed his teeth in 5 days. He has been isolating himself a lot lately and I have been the only person heās seen in a while. He hasnāt been going to run errands with me like he used to. I have gratitude that for the moment he is safe, but it is so difficult to see him in his small world and all his irrational paranoia. You just can t even believe the continuing sadness seeing your child this way. It never seems to end or really get better and accepting it is just so darn hard.
2 Likes
Irene, Iām so sorry for your sadness. Iām so sorry youāre alone in this, as his only contact. Your son really does sound like heās decompensating. If you encouraged him to go to the hospital āto feel safeā, do you think he might say yes? He could try a new med?
I really donāt think acceptance is ever going to be a possibility for us. I think our stages of grief are just going to fluctuate back and forth from anger to depression/sadness for the rest of our lives. I think, for us, the stage of acceptance will be more about our ability to cope.
My son is in a really bad way right now too. Youāre not alone.
4 Likes
Thanks for your kind thoughts. Tomorrow is a new day and hopefully it will bring some joy and calmness for our sons and us.It make sit easier to cope with all the understanding and kindness on this forum.
2 Likes