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#122

Thank you! This is a trip for work, which I haven’t done for years! My son is excited about where I am going (Stanford!) so that helps.


#123

Valúo en, good for You for exercising self care and taking the trip. Have a great time!


#124

Good idea to give him the role of the comforter, they need that. He will most likely be fine, I went away this last winter twice for 6 for days each time, and was worried the first time and almost didn’t t go, really glad I did tho, and the second time I was less worried, We talked a lot when I was gone and I did miss him and his puppy. He held it all together surprisingly well. My son doesn’t t drive so he was pretty much stuck in his apt. he was really happy to get out to run errands when I got home.


#125

Today I talked to someone at work about my brother and his diagnosis.

I’m honest about what I’m going through but I play it off easy breezy and that we’re just trying our best.

I make jokes with my partner after work and I laugh about it loud and happily. Try to push that feeling away maybe with some humour.

Then I come here and I cry. I feel my loss. I want to be able to take this all with some grace but it’s so hard and the tears fall harder.


#126

I think it can be a big deal to talk with people “out there” about brain disorder issues.

There is grace in both laughter and tears.


#127

Hi, I am feeling so hopeless and sad today. My son seems so withdrawn lately, like he is sinking more and more into his own world. I am having trouble functioning at work because I feel so heartbroken. I don’t really want to do anything social with any friends, I don’t really feel up to much. I cry at least twice a day, mostly when driving. Just know you guys would understand.


#128

I’m sorry Irene. I’m sorry for your heartbreak and your tears. I know it’s hard.

I’m not feeling so great either these days. The isolation is so hard to watch, and the up and down cycles of this illness are so disheartening.

I hope you can try to forget about things while you’re at work. I know it’s hard.


#129

I am finding a very strange dichotomy in my life right now. My career appears to be flourishing and I am happy with that but in the other half of my life my child continues to struggle and I struggle daily with my grief. I compartmentalize it well until there is quiet and the walls I build throughout the day crumble like sawdust.

I spent an hour crying Saturday because while walking through a grocery store my daughter was smelling dead bodies and blood. I was surrounded by people going about their normal day while trying to guide my daughter through a revolting onslaught to her senses. What was once a normal activity in our lives has to be weighed against the cost to her. And sometimes it just hurts in an almost physical way. And the emotional and mental strength it requires is very overwhelming. I find myself taxed in ways I can’t fully understand. The exhaustion hits randomly and unexpectedly. Now is one of those times.

I am weary and heartsick. But on the surface everything is fine. What a lie that is. Is my life a lie now? Am I a lie? Is it all just a facade that crumbles under scrutiny?


#130

Charity-Marie,

I am sorry you are feeling at an impasse and so sad today. With our children who have this illness, we do experience grief daily. There is no respite, the grief is present in every aspect of our lives. We mourn the child we once had, and the child we know we cannot have. That being said, after dealing with this illness for 14 years, I have tried to change my perspective to have some, even if it is fleeting peace. I focus my attention toon on gratitude, on the baby steps my daughter has made with this illness. When my husband died suddenly 8 years ago, I did not think I would be able to go on, but I had to since she had no one to take care of her. In many ways, she gave me a purpose to continue.

I send you a big hug. So many of us relate to your feelings. It is good you have a safe venue to come and honestly express yourself. Stay hopeful. Have a peaceful evening.


#131

Thanks Day by Day, I work about 12 hours a week and that is all I can handle, sorry we have to deal with this horrible disease. How is your son doing?


#132

I’m just going to say it, for the first time publically.

My son isn’t really my son anymore. My son’s body is there, but it’s not really my son inside the body. It’s now a stranger, for the most part, inside my son’s body.

I miss my old son. The boy I raised.


#133

I know how you feel, you wonder who this person is. My son was diagnosed 3 years ago and while he is med compliant, he seems to be getting more socially isolated and more paranoid. Once in a while he will smile or say something and I will see a glimpse of my son before he got sick. When this happens it is heartwarming.


#134

Hi, I had really similar hallucinations to your daughter for years. I was an adult when I had them. It’s really difficult but as long as she is aware that it’s not really happening, she’s actually in kind of good shape. Plus if she was near the butcher section or a cart with lots of raw meat she probably could smell those smells.

It’s okay to have different experiences; your sadness and grief are normal for a parent whose child is ill. Not a lie, just a compartment, like you wrote. You don’t need to stay in that compartment all the time. Your feelings are legitimate and part of life.


#135

Hey Irene,
Yes all if us on this site do understand crying twice a day…so sorry you are blue.
Please, understand everyone on this site has a different situation, but we are all sad together. Hoping to give you some support.
Take care and God looks on all of us who suffer


#136

I miss my before son too.

Yesterday while talking to my friend, the former FtF leader, she said that some people had tried to console her after the loss of her son by saying “he’s in a better place”.

Her son had made excellent progress dealing with his scz on the med clozapine. Of course she was not comforted by that statement. Her son had loved his life. He had gained so much of it back through meds.

I realized that my “after” son loves his life also. He really does. He has the really bad psychosis days which shut him down. There are a lot more bad days than good days anymore, I remember when it was the opposite.

But on those lighter days, he does do stuff. As his psychiatrist said he works on things, he makes plans.


#137

Hope, I’m glad to hear your son has motivation to work on things and make plans, on his better days. My son has no motivation to do anything to better himself. He just sits all day, everyday.

I hope it doesn’t stay this way for the duration. That would be a heartbreaking outcome.


#138

I really hope yours doesn’t stay that way. Mine is getting worse but he really takes some odd turns along the way. The mom in me thinks, yes, he’s making plans, but those plans are to work around worsening delusions.

As we listen to people’s stories, it seems like they all change, everyone always talks about the new normal.


#139

Off Topic: not sure I am posting properly. I have made several posts on this thread, and do not know if they are posted properly. I do not see the.


#140

@Alwayshopeful - I see several from you. The one before this was to Charity-Marie.


#141

I can see them also, some of them are to individuals (like the one to Charity Marie) Sometimes to be sure whoever I intend to see my post sees it, I do- @Alwayshopeful just to be sure.