Family and Caregiver Schizophrenia Discussion Forum

Thankful for Change and Hope

My 35 year old daughter has schizoaffective bipolar disorder and has been experiencing symptoms for about 5 years now. Since September of this year, she has been in the hospital 5 times (all self-committed). This last time they kept her almost 2 weeks…which is rare from my experience. Some of the facilities were helpful…some not so much. This last place though…they paid real interest. They completely changed all of her meds…and found her a group home (she has been living with me).

She has been in the new home about 10 days now. The place is not perfect…but she feels peaceful for the first time in a very long time. I am not naive enough to think that things will be “all better now”. But…at least it is a glimmer of hope that things can and do change.

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Thank you for this post, @Sweetpea. Our son is about to embark on the same type of change. As sad as it is to realize we, his parents, can’t provide him with what he needs to be stable, we’re really hoping group home living will give him a chance at a better outcome. Isolation has been detrimental, to say the least.

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Oh, @Day-by-Day I truly hope this works out for your son. I agree that the isolation is not good for our children.

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Do you think it’s been the new meds that have given your daughter some peace, or do you think it’s the group living? Maybe both?

I’m hoping that having people always around, 24/7, will help our son feel safe. He’s also just recently had a med addition and a ton of ECT.

@Day-by-Day. While the med change certainly made a difference…I think the change in environment has brought her the most peace. She has been convinced that someone is trying to harm her at my house. At the group home, she feels safer. One because she believes “they” can’t find her, and two because her room mates are all much older…so that makes her feel safer too. I am concerned that she will eventually feel her new place is a unsafe as well…but I am not going to borrow that trouble.

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Well hopefully your daughter can feel safe in her new environment for as long as possible. Paranoia is just so tricky. I’m wishing you all the best with that.

Our son has been living in constant fear of “them” for over 3 and a half years now, and this is even while living in the house he grew up in.

We’re just trying to leave no stone unturned. Maybe a change in environment will help. Maybe it’ll make things 10 times worse. It’s a huge risk, in so many ways.

Guilt and worry. My life these days.

@Day-by-Day

I totally empathize with your apprehension over the next steps. You know, we both have been given a hard place to walk with our children. NO ONE would ask for this life…yet here we are. All we can do is take the next step the best way we know how…and love them. As your forum name aptly describes it…just do this day-by-day. If this latest choice does not work out, then do the next thing…and then the next.

Some things I experienced/learned from placing my daughter in a group home:

It has been an emotional roller coaster for me
I was ready to give up too easily when my daughter seemed she would not even make the first day there. I told her to please…continue to try…and she did.
I was overly concerned about my daughters accommodations
I was overly concerned about the motives of my daughters house mother

I do hope the change for your son is positive, and that you get some much needed rest. I would love to hear how things go…

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Our son will be stepping down into group living from a 2 month hospitalization, so we’ve all had some time to get used to the new plan. At this point, our son seems ok with it.

I think the ECT treatments have really brought him back, and have helped him become more aware that something needs to change in his life. You are right though. We can and will take it a day at a time, just as we have since he first became ill.

The group home is very close by, so that’ll keep us involved in his life and on top of things. Also, he’ll finally have some structure to his days, and constant companionship, so hopefully his negative symptoms won’t dictate the quality of his life.

We shall see.

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wow, this is great…

ReBoot works:

two years after, still good relatively speaking

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@Day-by-Day

Thank you so much for sharing the details of your journey with me. I hope the best for you and your family with this next step. :blush:

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Yes, 15 treatments so far, and maintenance to come. We’re cautiously optimistic. The look of awareness is back in his eyes. It’s pretty remarkable.

I’m so glad your daughter is still on track.

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Sounds like a positive step to me. My grandson has recovered is living a decent life working fulltime. Clozapine changed his life in days. Since Clozapine he has been getting better and better. Been 4 and a half years now. So there is recovery. I have seen it. Good luck

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So, it didn’t work out. Two days in the group home, and the stress was too much for him. He’s once again in the hospital. I had so much hope.

Not the happiest new year for us, to say the least.

I’m so sorry, I guess we have to hope that he got a glimpse of what he can expect and wants to try again later.

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I am really sorry to hear it did not work out. :frowning:

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Perhaps the step down to the group home was just a bit premature? It certainly is a roller coaster ride. I’m so sorry for such a stressful start to the new year.

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Thank you @hope, @Sweetpea, and @Itsastruggle. It’s heartbreaking. We just felt like he was on a path to a quality of life. He was really trying to be positive. Now, everything is once again so unknown.

Two months in the hospital allowed a lot of treatment and progress, but a hospital provides a controlled and structured setting. Re-entering a community setting just triggered major psychosis, even though he was in a highly supportive respite house, with a high staff to client ratio. We were shocked. He was so stable when he was discharged. There’s clearly just so much more work that’s going to need doing.

@lindag, looks like Clozaril is on deck. It’s the only stone left unturned.

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Our family members are so fragile. An older mom from my Family to Family class (her son was in his 50’s) told us our family members do best when they have no stress and how are we supposed to keep any and all stress out of their lives?

We try so hard and they try so hard, hugs for you Day-by-Day, hugs for you.

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Fingers crossed for the Clozaril. From what I read on this forum, it sounds like it has done so much for many like your son. And Elyn Saks (the law professor who is very open about her sz) swears by it - it has been the only thing that really has helped make her symptoms manageable.

I hear you re: the stress for family/caregivers associated with the stress sensitivity of people with schizophrenia.

My husband rarely experiences stress, as it seems to get channeled directly into paranoia and other symptoms.

Makes me grateful for my muscular tension and anxiety in a weird way, as clearly things could be worse!

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Yes @hope and @Itsastruggle, stress sensitivity is just so debilitating. The smallest thing triggers psychosis for our son, even just someone coming to visit our home. It’s terrible.

I’d like to think Clozaril will help him have a life, but honestly I have very little hope. He’s on maximum dosages of Invega injections and Latuda tabs, and he just completed 15 rounds of ECT. Still, he can’t maintain stability in society, even when it’s highly supportive.

I don’t know what’s gonna happen now. He’s been compliant in doing everything we’ve asked him to do. Nothing works. Poor kid.

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