Family and Caregiver Schizophrenia Discussion Forum

Question for caregivers

Hey. I’m 44 and have SZA. I never talk about things that make me paranoid. I never talk about why I can’t go to the grocery or walk in my neighborhood or leave the house without my husband. I don’t talk so I don’t burden my husband or anyone else. But then I suffer alone. I just don’t want people to burn out. Is this what’s best for my husbands sake?

I cook, I help clean and do dishes and laundry to help out. But there’s a lot outside the house I can’t do. What do you think about this as a caregiver?

If you don’t want to burden people with your story, there’s the possibility of seeing a therapist to talk things through. That was my solution. It’s their job to listen to such issues, and in my experience they have a genuine interest in hearing your stories and helping you. I tried not to burden my family and friends, and over time through therapy, I became better at coping and burdens of illness became less and less, and I ventured out in the world which led to more successes and on and on.

It’s not a solution for everyone and it takes the right kind of therapist. I lucked into my first therapist who was a good fit. Access to online therapy has opened up opportunities of late, so the main barrier is cost. Barring this, there’s the Peer-To-Peer counseling programs of NAMI and Clubhouses for less formal venues for help.

You may also want to consider reading Elyn Saks’ book, The Center Cannot Hold. She describes her experiences with psychotherapy as a person with schizophrenia. She, like me, is an advocate for psychotherapy for people with schizophrenia in certain circumstances.

4 Likes

I already don’t talk about it with family. What I’m wondering is if family would prefer it that way or if I should tell them.

Hi Zannah, my son has been living with sz for over 20yrs. He shares very little with me, I would be happy if he felt able to open up as it might help us reach a greater understanding. I dont think it would feel like a burden, but as he doesnt tell me anything I cant be sure. I dont know how your family or anyone else would be, hope it helps.

1 Like

Thanks for sharing your thoughts. I’m not the type to try to get attention so I think maybe I’ll ask my husband and mom if they have questions, and just stick to answering their questions. Maybe that’s the best route

3 Likes

That sounds like a good approach. I would definitely welcome it from my son. I hope it works out well for you all.

2 Likes

Thanks @penelope_pitstop

I would love my son to share his thoughts , i am waiting for the day he will open up . No way is it a burden ! it will help me understand what his thoughts are and how he is feeling .

2 Likes

Ok. I hope he opens up to you someday

1 Like

As a caregiver I find it useful to learn what makes our loved ones paranoid and why. Otherwise, I have to second guess and many times I get it wrong. While my discussion with my daughter who is schizoaffective can sometimes get pretty stressful, it is usually emotions that has been bottled up. By learning what affects our loved ones, we can only make things better.

3 Likes

I recommend a therapist even if it is just a telehealth call weekly or as often as possible. I am a caregiver for my sz son and the impartial professional advice is a goldmine for me. With professional guidance you might learn tools that would expand your safety zones considerably over time.

My great aunt had agoraphobia and chronic anxiety so bad she could barely move from her bedroom to the bathroom on a daily basis, she was like that for several years until she started intensive home based therapy with a professional. Within 2 years she was going out and doing daily activities regularly.

Outcomes are varied for everyone because everyone is very different but it gave me hope that therapy would help me and it really has. Mostly it has given me a whole array of coping tools to deal with the complex PTSD (and the triggers) I contend with personally every day. I wish you well. Take care.

1 Like

Thanks. I’m actually getting assessed in a couple weeks to determine if I qualify for a really intense therapy the country mental health I go to has. It teaches you to stay in your rational mind instead of emotional or otherwise.

My friend did it and she went from not working or having any friends for 10 years to working full time and having tons of friends. I met her at the county mental health.

Let’s hope it can help me if I qualify. The problem is it’s designed for people with borderline personality disorder and I don’t have that. But I was told there’s an assessment you can take that gets you in without having borderline personality disorder

1 Like

I hope you qualify. The support groups and therapy I have been in have really taught me a lot! I am well familiar with rational mind. Good tools to learn. Best of luck. :slight_smile:

2 Likes

Thanks @Catherine i appreciate that

1 Like

dear maggotbrane, I find your comments very assertive and I thank you for that.

Did I say something that required assertiveness or was this a statement in general? If I did, I apologize. I didn’t mean to do that at all @rosyd

Hi, I might have replied to you due to a mistake on the screen from my part, I meant to reply to a person who made a comment to you; I, however admire your courage to share with us on this forum, it help us to have a broader view on the possibilities and experiences to help our loved ones.
I’m the mother of a 48 year old who has struggled with sz for about 30 years and lately it’s been so severe and hard to watch.
I’m wondering if I’m doing the right thing myself right now but if I’m failing myself I assume my responsability; I thank you again for sharing your journey so we might have a better idea of new possibilities.
My best wishes to you!

1 Like

You probably have, but I thought I’d ask - has your son tried clozapine? Or more than one antipsychotic? Shots are helpful too because he won’t need to remember to take his meds, plus if he’s paranoid, he’ll already have the meds in his system so the paranoia can’t stop him from taking his meds.

1 Like

No he hasn’t, we’re in IL and I’ve seen on this forum that others from other states or countries have talk wonders about clozapine; I have to mention it to the doctor.
from 2019 to date he has been in and out of the hospital for the 9th time, in fact this past Monday he’s been there for the 3rd week; since I’m also his legal guardian it was an experience to have the doctor to ordered a long release shot to him; in order to see this happen I had to go to talk to the judge in our county to give me a letter clarifying that I was appointed plenary guardian of my son including:
-the power to place him in a residential facility;
-to consent to all medical treatment; and
-to investigate and marshall all assets.

Only after going before the judge and having a written letter clarifying what it means to 'consent to all medical treatment including psychotropic meds the doctor finally was able to prescribe the long release shot, which for now is abilify 400 mg every 28 days. He’s been always resistant to the meds that’s why he has to have this kind of administration of his meds

Unmedicated he’s terribly paranoid and he screams what I can’t even repeat, throws away everything including or shredding money, right now he’s lots better but I’m very concerned that once he’s discharged he stops the meds so I’m already looking into a long care facility, I have determined that he can’t live on his own due to the damage that he’s done to be evicted from the low income apartments and prior to this last hospitalization he decided to go to a cheap hotel and I allowed him to do it but he repeated the pattern of damaging, it was expensive!

So my question to you is: have you tried clozapine?

I’d love to hear from you asap.

Thank you for your reply.

According to my dr, I’m not a candidate. But I know others who said it’s a miracle drug for them. But it doesn’t work for everyone. Plus, I shouldn’t have recommended it because I’m not a dr. Sorry about that.

1 Like