Family and Caregiver Schizophrenia Discussion Forum

New here. New to all this


#1

My son was hospitalized in October after hearing voices. He’s been started on medication which has been hit or miss, with a second hospitalization in November. This came out of the blue so we’re overwhelmed and feeling lost. I’m reaching out to those of you further down the road. Is there anything we should be doing to help him as he faces these challenges? I’m scared and heartbroken as I watch the joy go out of his life and know that there isn’t anything I can do to change this.


#2

Hi StellaJump, Im sorry about your son…the fact that hes on medication is a good start…my mother has been ill for years but she refuses help. in doing research on schizophrenia ( which runs in my moms family) i came across the name of Dr Abrahm Hoffer. he is deceased now but use to treat patients with high doses of niacin with great success…i tried to get my mom to try it since she is scared of medication but she refused. but its worth looking up the info on this dr :slight_smile:


#3

Welcome to the forum… I am also new to all this… we are still working on getting the official diagnosis for my daughter who just turned 18… she actually came to us telling us that she had been having problems with hearing voices and we started getting her counseling and now in the process of finding a psychiatrist.

I know the overwhelmed feeling.

The best thing I can do for my daughter is to be there for her and listen… The counselor told us that open family communication will be a key factor in her mental health


#4

Sorry to hear you’ve got a lot of chaos going on.

Schizophrenia is huge in both the impact on lifestyle for the diagnosed and their family and also in the volume of new information you and your son will inevitably learn.
The answers won’t all come from 1 source, either.

I would recommend that you start by continuing to demonstrate patience and empathy toward your son. You don’t have to be a source of unending wisdom, either. Sometimes, “That sounds really tough.” Or, “I don’t think I can imagine what that’s like.” Is enough.
Keep encouraging your son to take medication and make doctors appointments. Outpatient therapy (either with a group, or individually) would be a good idea, too. But keep in mind that it may be difficult for him to do all those things, especially if his disorder generates suspicion, or causes him to be low on energy and mental focus.

Remember that schizophrenia is very taxing. It is exhausting to evaluate every thought to differentiate reality and the negative (not observable) symptoms can include lack of motivation and energy.

So, pick the key few things that help the most and let little stuff slide when it can slide. Medication, therapy and primary care doctor visits (specifically, a psychiatrist) should be priority #1 above all else.

If your son is old enough to no longer be a dependent, seek information on how your state handles disability assistance, food stamps and etc…

If your son believes he doesn’t need medication, therapy and doctors visits, look into the book “I am not sick I don’t need Help”

And equally important;
Start building your own support system.
If you have close family and friends you can reach out to, start building that network. Taking care of someone with Schizophrenia is difficult, but it is much easier if yoy have your own support system to give you a hand when you need it.

Having seen the long term difference in my diagnosed brother over several years, I highly recommend medication, therapy and frequent doctor visits. It is my opinion that delaying those things, or seeking alteratives is a complete waste of time.


#5

So sorry about your son. I was also worried about my grandson. He was on all kinds of meds Zyprexa,Seroquel,Geodon(this one he got dystonia and was paralyzed until we went to ER they gave him benadryl and he was better) Abilify. None of them worked and itg was horrible watching his voices take him away. My friend who worked i a psyche hospital said get him on Clozapine. I had to fight for 2 years and finally he was put on Clozapine a life changer for him. He works full time again. Hope you find what works


#6

My son had his first episode in the Navy at 22 years old. We didn’t want to believe it was schizoaffective disorder. He’s highly intelligent and has his whole life ahead of him. Now 4 1/2 years later and 3 more hospitalizations I have come to accept the diagnosis. In the Navy he was on risperidone, then geodone. Both had terrible side effects for him. He went off the meds. His first hospitalization 2 years after the Navy was for 6 weeks. He had to drop out of college and put his life on hold while he got better. He was on Risperidone and Cogentin (for the side effects). The Cogentin side effects were even worse then the Risperidone. They sent him home with Abilify because they thought he was Manic Depressive with Psychotic Features. Abilify had him pacing so much he collapsed. He went off the meds. 1 1/2 years later he had another episode. He again had to drop it of college. He had a 4.0 for the last 2 semesters in bio chemistry. His fiance convinced him to go to the Psychiatric hospital, they put him on Olanzipine (aka Zyprexa). He did well but the hospital treated him horribly. 4 weeks later we had him taken to the VA hospital where he got the best care ever for 3weeks. He is now on Depakote to help with delusional thinking, impulsive behaviour, and pacing. And Olanzipine (Zyprexa) anti-psychoctic. He’s going to counseling. I’m hoping he’ll stay in counseling and on his meds but this disease makes the person think they are not ill and do not need help. After all these years I have gained knowledge on this disease by doing a lot of research. The NAMI.org site is chock full of information. I’m also attending an online class called NAMI Homefront which provides knowledge and support for mentally ill service member families. I highly recommend a book called “I am not sick, I don’t need your help” by Dr. Xavier Amador. I bought mine on Amazon. I bought one for my son’s Fiance as well. This book gives you insight on how to talk to your loved one and get them to respond back to you and trust you. Another site to check out is LEAPinstitute.org. They have a video called Living with Schzophrenia that gave me hope. This is a life long struggle for our loved ones and we have to be strong and brave to help them though it. I hope I have helped you in some way.


#7

If there is a NAMI near you, I was helped a lot by their family-to-family class. Reading as much as possible on this site was a lifesaver for me personally. Dr. Amador’s book, “I’m not sick, I don’t need help” has a method of gaining trust that is very applicable (it takes a while to learn to tweak it to your own needs).

This is a devastating, heartbreaking illness. All of us here understand your pain. Be kind to yourself and to your son.


#8

If you have a NAMI group near you, I recommend their family to family group as wellas all the other information, support, and advocacy they offer both for the caregiver and person with the illness. I’m sorry for your family but you are not alone. :pray:


#9

What is his diagnosis? If it’s schizophrenia or schizo affective starting fighting now to get him on Clozapine. It’s the gold standard but they don’t like to use it because of the side effects. Changed my grandsons life. He has a life now. Good luck it’s a hard road. Read positive books. Ben behind the voices, I am not sick I don’t need help, watch elyn saks on Ted talks, watch Dr michael Dipoalo on you tube, and Dr amador beyond the glass ceiling. There is recovery. Havd hope. My grandson is one he works fulltime and is doing awesome.


#10

To help your son, be there in a way that supports him without taking responsibility for his illness or behaviors. It’s incredibly difficult to know what to do.

Love your son for who he is. Find shared interests or pay attention to his positive and neutral interests and help him keep doing them.

He probably needs a huge amount of sleep. Sometimes it will be all over the place at all different hours. He might not eat at regular meal times. Keep healthy food that he likes in the refrigerator and cupboards.

Try to be patient during the times when his communication becomes slow or unusual. Listen to him. Listen a lot.

Your calm patience matters. Your ability to go to the grocery store matters. Your love matters.

This is a medical illness. Rely on the doctors and other professionals you trust. Different meds work differently for each person.

Make sure to observe your son’s responses to medications without bringing it up to him. At one point, my family member had a physical reaction that I called the nurse about. It turned out the reaction was a side effect that could be managed by a lower medication dose. I did not talk to my family member about this until AFTER finding out it was a side effect and that there was a way to manage it.

Find a counselor or social worker you can talk to to help you get through this huge change in your lives. Rest whenever you can.