Recommendations for Newbie, plz?

[nancers]

Hi everyone, I know there are books listed here: Recommended Books for Families Dealing with Schizophrenia

I am posting to see if there are other books that you all, as parents, would recommend for someone like me. We just got the diagnosis of schizophrenia for our son a few weeks ago and I am just overwhelmed.

Also, I’m considering finding a therapist for myself. Someone to help me navigate through my own emotions while making the best decisions to help my son. Again, I’m feeling overwhelmed. I can’t seem to stop the tears, I’ve been crying every day since the diagnosis. Do any of you have a therapist? What kind? IDK if I should find someone to help me as a parent, or someone who is skilled at dealing with SZ…

Any book/therapist type recommendations would be greatly appreciated, I don’t even know where to start. Right now I’m heavily invested in kleenex it seems.

TIA
Nancy

[Catherine]

Hi, Welcome.

So sorry that your son was diagnosed. I can tell you that there is hope. It just takes time and patience to gain stable ground and your “new normal” whatever that is. It is very normal to feel overwhelmed. It is an overwhelming diagnosis for you and for your son.

You are very wise to get a therapist for yourself. I have had one for years and I couldn’t be as okay as I am without the added support. I have also taken the free Family to Family classes that are offered by NAMI (If you have a NAMI location near you) Those classes were extremely educational, supportive and enlightening…overall invaluable. NAMI Family-to-Family | NAMI: National Alliance on Mental Illness

One book that might not be on the list and might or might not even pertain to your situation is a book for caregivers that care for mentally ill people with Anosognosia which is a pretty common and frustrating condition where the ill person does not recognize their own illness and because of that will often refuse treatment or medication. The title is “I’m Not Sick, I Don’t Need Help” By Xavier Amador. Books – Dr. Xavier Amador | Psychologist & Founder, The LEAP Institute

As for crying I cried so much for so long. Fortunately for me and my son, things are much better now.

You have to process everything, it takes time. I say let it out.

There are many helpful posts and stories here (mine included). Suggestions and ideas. Look through as many as you like and if you need to ask any questions or just want to vent you can do it here at the forum or in a private message form. There is a lot of support here. In addition, getting a therapist for yourself will be great additional support. I wish you all the success in getting effective treatment for your son and finding the all of support that both of you need. Take care! and again, welcome!

[Daisy15]

Hi there. I can totally relate to how you are feeling. My daughter was formally diagnosed in January, but we first started seeing a doctor last year for her hallucinations and other symptoms. I have good and bad days, but I am finally coming to terms with things. I had to go on antidepressants to deal with things, so don’t feel bad about seeing a therapist.

As for books, I have ordered so many. Here are the ones I recommend: The Center Cannot Hold, The Quiet Room, Surviving Schizophrenia: A Family Manual, and Broken Brain, Fortified Faith (one of my favorites). I’m in the process of reading two new ones right now, so I will keep you posted. I probably have a collection of 15 books on sz now.

My daughter is a teenager, so this dx has been especially hard to deal with. Reminding her to eat, figuring out medications and doses, dealing with her severe depression and self-harming, etc. has taken its toll on me. She has good and bad days, but I am so proud of her for going to school and doing her best. I just always remind myself that I have to stay strong for her.

Most importantly, forums like these where I can reach out to others going through similar things is beyond helpful. I’m here if you need to talk. Big hugs.

[nancers]

Thank you @Catherine and @Daisy15,
Your kind words and thoughtful advice mean more than you know. I feel so isolated with this diagnosis and the problems we have been facing for the past 2.5 years. Knowing there are others who have walked this path ahead of me and are willing to extend a hand has brought more tears to my eyes (of gratitude).

I will be heading over to Amazon right now and check out some of your book recommendations. There is no NAMI location near me, so I will investigate our other local resources this weekend too. Thanks again ladies, you just started my day off feeling less alone and hopeless.

[Daisy15]

I felt very alone, too. I finally opened up to my best friend, as I had no one to talk to about what I was going through. I encourage you to find someone that you trust and can openly talk with, as I don’t know where I would be right now if I still had to keep things locked inside.
It isn’t easy and there are times when I lock myself in my room and scream and cry…Rather than focusing on all the negative, I try to look at the positive. I’m slowing weaning myself off my antidepressants. It is a roller coaster ride when it comes to my emotions and her state of well-being.
It will not be an easy journey and I have no clue what the future has in store for us. However, I’m choosing to take it one day at a time.
We live in a town and state that lacks in metal health resources, which is why I found forums like these. Getting her into a weekly counseling session was the best thing I did, as she often hides things from me because she doesn’t want to upset me.
Just know that many people are living healthy, normal lives who suffer from this illness. I even had my daughter google all the famous people who have had it.
We are here if you need to talk. Hang in there and know that you are not alone. Hugs.

[nancers]

So I purchased some of the books and downloaded them onto my Kindle. My goal is to educate myself about schizophrenia, but I’m finding that they make me feel even worse! I had hoped that by learning more about the disease and getting a better understanding of it, I would be able to cope better. Whenever I read for a bit, I feel myself sinking farther and farther down into a dark hole. Maybe ignorance is bliss in a situation like this?

Everyone says there is hope, but I’m just not seeing it right now. I have this underlying, chronic feeling of sadness, and I have been crying several times a day. My husband is no help at all, he is an ostrich when it comes to things like this. (he’s the stepfather)

The therapist I found on my insurance that I thought would be a good fit just called me to tell me she isn’t taking new patients right now, so I’m back at square one there too.

When my son called yesterday, he was really angry and frustrated about his meds. He can’t stand the way he feels and he won’t see his psychiatrist for another 10 days. He yells that he doesn’t want to go back to the psych ward, but I am worried he will stop taking his meds. From what I’m reading, I feel like I can almost expect that to happen.

After we hung up, I thought “This is the way it’s going to be now, I guess”

I know this isn’t a death sentence, but in some ways it feels like it is. Sorry to be such a downer, but I do feel a little better just letting some of it out.

[Windyhill63]

My daughter was diagnosed officially in January… it is hard around here to see a outpatient psychiatrist also. The only way we were able to get my daughter any help was a crisis situation that brought my daughter to the hospital… and check into inpatient services… for my daughter it was voluntarily. It is hard to deal with it all.

[Daisy15]

Hi @Nancers. As I mentioned, my daughter was dx in January, so this is all pretty new to me, too, although we started seeing doctors last March about her symptoms. I can totally relate to your feelings, as they are still VERY raw in me, too.

Some days I scream and cry, “Why her?!” It’s beyond sad watching her slowly slip away from how she used to be. I blame myself a lot, too. Like, what did I do wrong as a mother?

I see FB posts of other kids her age planning for college and celebrating school dances, etc., which make me feel even more worse. She should start becoming independent right now, but instead she seems to be regressing. I have to remind her to take her meds, eat, etc. I sometimes feel like we are going backwards in life, not forwards.

I had to go on antidepressants because I was so, so sad about all this. I guess I just try to remind myself that this is our journey and there is nothing I can do to change it. It has taught me to be more patient, empathetic towards those with mental illness, loving, etc.

I’m scared for the future and worry about her often. She is my first and oldest child. Seeing our children in pain or struggling is never easy…

Does your son have a counselor? I occasionally go in with my daughter and talk about how things are impacting me, too. Luckily, my daughter and I can still have open, honest conversations about things. I try to stay strong in front of her though.

The first couple of meds she was on were awful. She turned into a zombie. She started Abilify and seems to be handling it better, although the hallucinations aren’t completely gone. ): It is a lot of trial and error…

I, too, felt like it was a death sentence. I guess I just try to stay hopeful that perhaps new meds or a cure will be developed one day in the future. I also try to find stories that show that a person with sz can go on to lead a successful life.

Hang in there…We all know what it is like and are here if you need to vent. Big hugs.

[nancers]

Thank you so much @Daisy15 and @Windyhill63 I really appreciate your responses. My son lives 5 hours away so I have that disconnect as well.

I can’t even stand to look at Facebook either, for two reasons. One being the same as you in that I see what other young people who graduated with him are doing, and the other being I can see some of the crazy stuff HE is posting. However, it’s like a train wreck, I have to look.

Today is another day, and hopefully we won’t cry today, right? I desperately need to find a counselor for myself, maybe I’ll get a call back today.

Thanks again for your responses, I feel less isolated this morning.

[Windyhill63]

I am not even on Facebook, nor is my daughter… my wife is, but that is only because until last year she had a sticker business. My daughter was on Instagram and Snapchat, but she is no longer because it was too stressful for her… she used to post her art on Instagram, but then she would do the compare and despair type of thing, where she would compare her art to others and think that hers is no good. Or there were people she thought were her friends but they would end up making her feel worse. She decided on her own not to do social media anymore.

[Daisy15]

It took several months to get my daughter in to see a counselor, too. Make sure you get on the list no matter what. I actually called back in October and pleaded and told her story. They called back 5 minutes later and told me they could get her in. Maybe try talking VERY honestly with the receptionist. It may not work, but miracles do happen. We live in a very small town, so our options are very limited. Good luck.

[daquilamarguerite1]

After scrolling through here, looking to see if the book I want to recommend is mentioned, I see it is not. I do plan to read through everything here, though, and the book I strongly urge you to purchase is: “Surviving Schizophrenia 7th Edition” by E. Fuller Torrey. The 7th Edition just came out and it’s available through Amazon. I personally consider this the best book on schizophrenia.

I know exactly how you feel about your daughter’s diagnosis :(. Believe me, we all do! Schizophrenia is a truly heartbreaking and horrifying disease. My son is 31 and lives at home (always will). He was diagnosed in 2013 and I still cry almost every day. Hopefully, you find some consolation here. This site was the first one for me. There are some very nice FB groups that are private, if you’re interested. I would be glad to recommend a couple that I like.

[daquilamarguerite1]

I’ve done some reading about the type of sadness or if you want to call it depression that we parents are suffering from because of our children’s diagnosis. I have learned that what we need really is empathy and finding this forum is where empathy can be found. No one else will understand that our hearts are broken, it feels like a death to us! And it’s not even really “clinical” depression. It’s sadness, it’s a loss, a blow as terrible as a death, because I know I couldn’t be any sadder. Look for ambiguous loss for an explanation. Other terms used are chronic sorrow and enduring sadness.

[daquilamarguerite1]

I know what you mean about the reading and learning about schizophrenia, and I also feel so down when I read but it’s so important to continue educating yourself. I need to take time away from my “studies” and that includes not looking at this forum and my private FB groups, because I just need to get a grip on my emotions.

[Sleepless]

I would definitely recommend a therapist for yourself, but look for someone who knows a lot about schizophrenia. You need to take care of yourself in order to help your child. Good luck

[nancers]

Thank you everyone, I am hanging on all of your words. I just got back from Virginia because my son had another psychotic episode. It was bad, his roommates asked me to come get him because they were afraid for his and their safety.

So off I went on another 5 hour drive, and he’s in the hospital for the 4th time (2nd time in a 6 weeks) and I have a headache from crying so much in the car on my drive home. I’m exhausted and helpless.

He called me today and in the middle of one of his bizarre rants he said, “I’m trying, I’m trying, but I’m getting worse instead of better” and then he continued to talk about Schizms, Auras, the Spirits and the one eyed cat he can’t control.

I would love to hear more about the private facebook groups @daquilamarguerite1. I found one, but it seems like it’s more for the schizophrenics than the parents. The other one I found is for parents, but no one is posting anything there. I feel the need to connect to others who get this ambiguous loss.

The book you mentioned “Surviving Schizophrenia” must have been on another list somewhere because I bought it and have read about 15% of it (according to my Kindle). Thank you.

@Sleepless did finally find a counselor for myself and have an appointment on Monday. I specifically asked for someone who was knowledgeable about SZ, and when we spoke, she shared that she has worked with many at a previous position. We shall see how it goes.

Hugs to all of you, this chronic sorrow and enduring sadness are somewhat lessened when I read your words here on my screen.

[Sherie]

Hi Nancers, my 16 yo daughter was diagnosed almost two years ago, and I immediately ordered a bunch of books. They helped a little, but made me super sad. I went to NAMI meetings. They helped a lot! I attended the 12-week NAMI Family-to-Family class series, which also helped a lot. The thing that helped the absolute most was a Facebook group called Parents of Kids with Schizophrenia. Most of FB is an emotional sinkhole for me, but that group helped me so much in the beginning of the journey. I have not found a therapist who is competent to help me, sadly, but I have found other professionals and new friends who are well-versed in trauma and coping strategies for families. I had to grieve for a few months, at first, and couldn’t take in much information. I was desperate to find help for my child and for myself and my other daughter, and eventually I did. Best wishes to you. In time, it will get better.

[nancers]

Thank you so much @Sherie , I will look for the Facebook Group you mentioned. I also agree that FB is an emotional sinkhole. I am hoping the therapist I see on Monday will be helpful, although I have to admit whenever I have tried to find therapists in the past for other life issues I haven’t been successful. Sometimes they give the most inane suggestions, imo.

I have to trust all of you when you say that in time it will get better. The thought of living each day like this is unbearable at the moment.

[Windyhill63]

There is one of the books on that list you first posted that I am reading right now… I am just starting it, but it looks promising. It is The Complete Family Guide to Schizophrenia - Helping Your Loved One Get the Most Out of Life by Kim Mueser and Susan Gingerich. It works through different aspects of how the different aspects of schizophrenia and how it affects the family and how to deal with them.

[caregiver1]

I like Surviving Schizophrenia, 7th Edition: A Family Manual by E. Fuller Torrey. Someone else mentioned it above. Torrey makes it clear that SZ is a neuro-biological disease and has to be addressed with compassion by all those involved.