Family and Caregiver Schizophrenia Discussion Forum

Aftershocks of it all

Hi All, It’s been 18 years since my son started to deteriorate mentally, since age 13. From depression/anxiety to Bipolar, drug use and Schizoaffective. From non compliant because no meds worked to totally compliant the last few years because meds mostly work and
he’s doing very well. Seems like every day he does more and more. He cooks when hungry, has great hygiene and is sociable although not always talking about what others are interested in. He’s getting closer to living on his own with supports.
My problem? I’m relieved to finally getting him to a good space. But I’m exhausted, too. And now I suddenly feel depressed about it all. Everything we went through. It was horrific, everything I learned about the illness and the medical field, and the gross lack of supports fir the disabled as well as their families. We are left with a tremendous burden without supports.
Lost my husband and other son through this. They wanted me to put him away years ago. I knew he wouldn’t have had a chance. I had to do all the work myself. Now, I’m angry and resentful of my ex and other son (who won’t even talk to me). So now I’m depressed. I’m 65 and single and caring for my son. Men my age want to enjoy their retirement, not care for someone like my son. So I’m alone and lonely. I’m grateful my son is doing well finally. But I’m feeling the toll it’s taken on my life. I haven’t even had time to care for myself. How do others do it? How do you keep from being lonely? Are there groups where someone like me can meet someone in a similar situation? Although I hear it’s typical that the man leaves the marriage in these circumstances. I’m just asking rhetorically. I doubt there’s an answer.
Just venting.

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Within all this devastation, you may want to take some time to give thanks that your son is better. This is certainly a great news and something to celebrate. Your efforts were not in vain. Take time to take care of yourself. Volunteer work could be a way. Something you enjo. Take a class on your community college… Othets can learn from your testimony, groups like NAMI have volunteers. Regarding the people you lost in the process, it is sad, but you made your choices. There is nothing you can do about that. Look forward to a better future.

@Donna1, I’m happy for you, it sounds like you did it, your son is doing well! You went thru the worst of it, and now you have your son to show for it. This is the sacrifice you have made for your son, and he’s stable and on his way to independent living.

I can only hope the same for my son by the time I’m 65. For me, my sole purpose & focus in this life is to ensure my son is taken care of, stable, and hopefully alittle happy too. Speaking for myself, if I knew my son was all of these things, I would be happy as a clam. I guess I’ve gotten used to the tremendous amount of burden and accepted it. I was initially resentful, but now just calmly accept. I have peace knowing I’m doing everything I can for him on a daily basis. There is a certain amount of peace that comes with that. I don’t want to wonder or have regrets on my death bed.

If I were you, I would be so proud. You chose to care for your son rather than send him away, and it sounds like you did an amazing job. It’s a hardship beyond any other, and no one else can fathom this life unless they live it.

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I’m so happy to hear your son is doing well, obviously from all your care, concerns and efforts. Remind yourself of that daily. I understand how tired and frustrated you are too. It has been so bad for me these past 12 months that I actually did want to live anymore. Selfish …yes. When a person is well enough to be able to take care of someone else they are blessed. I just keep praying for forgiveness and strength to keep on.

Sold the house as many of you have given me feedback and hVe returned to the east coast but the dilemma and saga continues with my son being homeless…I try to take one day at a time and keep praying for God to help me. If I was not caring for my 98 mom, I would move to him…and will pick up the pieces if there are any at that time. The court systems and the mental health regulations are meant to be for the greater good…BUT…you can fill in the blank with your own experience I’m sure.

Let us all remember…there is HOPE in the word hopeless…one day, one hour, one minute at a time

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Great news about your son doing more and more. We all seem to run on reserves not stopping because we care so much about others…

Your fear of not being accepted by someone else…if that is true of a potential person…you don’t need that person…you want someone to love you unconditionally and share your life…the good and the bad

Don’t sell yourself short …not everyone can do what we do day in and day out for decades for a person with mental illness…

I think what you are experiencing is very normal, @Donna1.

You were in an extended period of crisis where you had to focus on acting/survival. Now you have the time and space to experience the emotions associated with what you’ve been through, so you are starting to feel things again. It’s a delayed grieving process, basically.

Let yourself feel what you feel, whether anger, grief or fear. And if your son continues to do well, you’ll slowly begin to feel better as well.

I’ve been through this process twice with my husband now, and although his recovery has been slow and gradual once he starts taking medication, it has outpaced my own emotional recovery by quite a bit, both times.

I feel you. My brother is 25 and my mom lives with him now. My dad washes his hands of the situation really since my brother says he hates him. Well my brother says he hates me too but I have to be there for my mom. Now I am trying to find a place to put him in because he refuses meds recently got him to get an invega shot with police assistance. But he just asks my mom to take him to mcdonalds everyday and he threatens her so I am worried for her safety. She is in her 60s and she can’t keep dealing with this and in the future I do not want to be his caregiver. He has physically assaulted me and he is too much to deal with and I have my own problems.

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I hope that you find your peace.
It’s incredible what you have done.
He has a life because of what you have sacrificed you have literally saved his life.
I hope that your other son can come around and be more a part of your lives.
I’m sorry for how you feel. Give yourself permission to feel these feelings, it is a very very big deal to be in so much suffering, and feeling alone,… just let it flow.
I hope your son can be your best friend

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I relate to everything you said. My ex boyfriend can get mean. More so lately. I have not seen him in a month. He goes off the grid once or twice a year. Wont talk to anybody. His parents blow it off. His mother moved away. She says “I’ve got enough on my plate. He will come around”. His dad lives close but he’s retired and just doesn’t want to deal with it.

Thank you all for your kind and insightful words. I think you’re right, itsastruggle, that it’s delayed grieving. I didn’t have a second to catch my breath, didn’t have time to feel or think of myself. Now, I’m happy he’s doing so well but I’m feeling all these feelings of loss of all those years and the sadness of it all and I’m asking myself “Now how do I start living my life?” And of course, my biggest concern is what will happen to him after I pass since I’m 65 and have health issues - immune compromised.

Every day, he surprises me with his ability to focus and concentrate and with his memory. Today’s surprise was that when I asked him to load the DW up, he also ran it, emptied it and put everything away - without asking. Seems like a minor thing for a 31 yr old but I’m sure you all understand. I wanted to get on the phone and tell someone but instead I’m telling all of you. Some days he slips if he smokes too many cigs but I take over doling them out to him again.

We were isolated for so long as it was difficult to go out in public with him. Now that he’s better and needs to learn more socializing the Covid virus is here.

I am very grateful for his recovery. But sometimes, I’m afraid he’ll slip back, that the only meds that helped him will stop working. I heard that happens.

I know I worked very hard for him. It takes Superhuman effort. I don’t even know how I did it with my illness. Now he tells me how he wouldn’t be alive if it weren’t for me and how much he loves me. I hope you will all hear those words from your loved ones. I tried not to listen to the hurtful words he used to say and would remind myself that it was the illness talking, not my sweet son.

I spent 17 years listening to psychosis and delusions. I once read that there is a grain of reality in delusions and psychosis and to focus on growing it. That’s what I’d do.

One interesting phenomenon is that he’s a musician and even when he was floridly psychotic and unable to communicate he’d sit and play the piano. While his brain was tuned into playing the piano he was then able to communicate clearly with me. So I’d sit next to him while he played and enjoyed those times of clarity. Id always suggest he play. I don’t know if anyone else experienced this. I believe it helped his mind.

Thanks again everyone. I’m taking your advice and allowing myself to feel. I had to spend too many years suppressing them. It’s a lot so I’ll have to pace myself.

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It’s good you’re there for your mom. She needs your support. I hope the Invega shots help your brother. Not sure where you live but I hope you find good care housing for your brother.

I’ve thought if some of those activities. I started teaching some children art until Covid. I’ve been a teacher and professor. But right now, I’m feeling like I don’t want to do anything that involves caring for others. Sounds selfish, I know. I just need a long break.

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It does not sound selfish at all, @Donna1. It’s OK for you to need things, too.