Family and Caregiver Schizophrenia Discussion Forum

Desperately need support

Hi all, I’m new and terrified and sick and miserable. My son is almost 20, so he’s right on schedule for schizophrenia. He is seeing a psychiatrist and is on a lot of medications. This has probably been going on longer than we knew but certainly since summer. FYI, the medication for side effects was a game changer, at least for now. Still not stable though.

Anyway, I’m so sick about this stuff that I can’t eat or sleep. I’m still maintaining helping him but I’m going to burn out. My anxiety is so high that I never want to not be with him. It makes me feel better when I know he’s feeling OK. I can’t do NAMI online support because I don’t want him to hear me talking about him. I’d say stupid COVID but I’m actually grateful he’s in online school. I think we’d have to pull him out otherwise.

I feel like my life is over and now will always be defined by my son’s illness, sorry if that sounds selfish. I’m scared he’ll kill himself eventually. I’m scared he’ll never be happy. I’m scared and so so so very sad and stressed. I don’t know how I’ll ever survive this, except I don’t have a choice. :frowning:

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Hi Mom72, I’m glad you found the forum. I can identify with everything you are saying, the fear, the sick, the sad, the stress, so many things to worry about its hard to know where to start. You have a lot of reasons to feel hopeful too. Your son is taking meds, which is huge. It can take a while on the meds, be patient and help him be patient. There is a lot more to recovery than medication as @Maggotbrane reminded us recently.

One of the first things they teach in the NAMI Family to Family course is that we must maintain our own lives and support the rest of our family members in maintaining their lives as well. You are right to worry about your life being over, its not selfish, its necessary that you don’t let his illness define your life - no matter how tempting that may seem. NAMI highly recommends that you find a therapist to help you keep your life sorted out. When they advised it in the FtF class I remember thinking “why do I need a therapist?” I wish I had worked with a therapist (and a lot of old friends on this forum are probably nodding their heads in agreement as they wish I had worked with a therapist:)

At Family to Family they also teach us that we have to let go of the way we usually view time. Recovery for our family members can take years, “take your foot off the gas” and slow down your time expectations.

Now is a good time to educate yourself. Read Dr E Fuller Torrey’s “Surviving Schizophrenia: A Manual for Families”. Browse through the threads here - there is a lot of good information. Keep an open mind when people make suggestions. You may feel like things don’t apply to your situation, that’s okay, but sometimes, at a later date, things that you didn’t think applied to you actually were what you needed to hear, you just weren’t there yet on your own journey. I know sometimes the things I really didn’t want to hear, was what I needed to hear the most and I am grateful that the people who said them were patient with me.

Our family members are on a journey, we want to help them find their way and listening is often our best tool. Take care, hope

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I am so sorry, @Mom72. What a terrible thing to be going through for both your son and yourself.

@hope has given you some very good advice and I don’t have anything concrete to ad, but I will share a couple of perspectives gained from my experience of having a sister and (very unexpectedly) a spouse with schizophrenia.

First, my heart really aches for you, as I have seen the pain my sister’s troubles have brought to my parents. It must be so very hard to watch a small human you brought into the world go through such an experience, with everything inside you wanting to make it all better for them the way you could when they were small.

Second, I agree that finding a good therapist and as many other sources of support for yourself is very important. If you can’t sustain yourself, you won’t be of any use to anyone else. My sister (the other one, I have two) pushed this on me when my husband developed symptoms, and it’s been very useful to have a place that’s just for me. It sounds like privacy might be an issue, but if you find a therapist who works remotely (as many are right now), you could have sessions outside or in your car. The same perhaps for NAMI, if they are working remotely.

Hang in there (as if any of us had a choice, hah!). Things tend to ebb and flow, so try to rest and do what self care you can when opportunity presents.

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Hi, just wanted to give you a little hope from another mom who’s daughter bounced to three different hospitals and over a year of visits and heartbreaking cries that I had to leave her there because she was not well enough to come home. Now, 2 years later, she is married, has 2 dogs and just got a job(well will see how it goes). I have stepped far back and take care of myself and spouse. Yes I still help her, and she does have symptoms. It’s a different relationship, she has changed, but I have remained positive and am an advocate for her and others that suffer from mental illness. Love has no limits. Love yourself too!

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@Mom72 I totally hear you about all of this. I feel like my body is full of anxiety. I am probably on year 6 of this. Looking back it probably started when he was 18 or 19. My son is 30. He was doing great after years of craziness and a force hospitalization. He went off his meds about a year ago and just recently has started to spiral. I am fortunate that he is still seeing his doctor in case he will willingly get back on his shot. Mine is sz paranoid. It sounds like your son is has depression?

I am sorry you are here but this forum is what helped me through understanding this disease and helped me get through several years of figuring out what to do. It is a very good resource. I tried to sign up for a therapist the other day, but their website wasn’t working and after 1.5 hours it was making me more stressed. So I came back here until I can deal with their site again.

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I just want to thank you all for your thoughtful replies, advice and compassion. My son is doing really well right now all things considered, although we are anticipating a medication increase come Friday because he’s still hearing whispers. I’m trying to stay in the moment and not jump into the future in my mind or play the “what if” game. I’m not always successful.

Although I really hate there are so many people who have experienced this kind of pain, people with sz and their loved ones both, it does help to know there are those out there who understand what we are going through. It’s easier to talk about with people who have lived it themselves.

I’ll keep reading the forum and I offer my deepest thanks. <3

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