Family and Caregiver Schizophrenia Discussion Forum

What do we do now?


#1

My 21 yo son was can I say living a normal life until Dec. 2016. He had a psychotic break/ substance abuse psychosis ( smoking pot at school ). This led to delusions about 4th dimensions and he was our new savior, which led to 3 mental hospital in 1.5 months, in between those he drove 3 states away to live at the beach. Search and rescue found him. All three hospitalizations were for psychosis and attempted life ending. The morning after he got home he woke me up having self inflicted injuries to himself. Before December he was happy. He is my closest son out of all three. This doesn’t run in our family. It is still a shock. So the seraquel is working, he tells me the thoughts are still there; but they are quieter. There is no instruction book for this. He just stays at home now. He was living @ college before. He has gained 15 pounds from the medicine. He has no money. He plays on his computer or colors . I get him to help out around the house but the medicine makes him kind of simple minded and forgetful. I tried to get him in an outpatient program for something to do but they only accept medicade and my son is on our insurance. I have applied for medicade it is a 90 day process. I don’t know what to do to help him. Or myself. I read his journal and he writes about ending his existence bc he still believes in the delusions. All I do is cry. I love him so much. This is hard to watch.


#2

It is such a shock. Welcome to the forum. We are glad you are here and sorry for the reason you came here.

There is a book called Surviving Schizophrenia by E. Fuller Torrey you might try.

I’m sorry your son developed this illness.


#3

Indeed this is a shock, I have been where you are with this illness and my own son who is now 32. He has been mostly stable since 2011 or thereabouts. It was a long haul trying many different medications and combinations before we found the ones that really worked. When my son’s voices were active he said there were 1000’s of them all saying he should die. He tried to kill himself twice once with pills and once by attempting to cut his wrists…fortunately help was close at hand. Once the voices were silenced the real recovery seemed to begin. My son used a lot of marijuana and other drugs before he got treatment. He never finished school because of his illness and his drug problem and only had a few jobs -none of which lasted long–again because of his illness and his drug problems…now he has been stable and drug free for several years but the normal stress of getting a job or finishing school now would only threaten his stability, he thrives in a calm, low or no stress environment with little expectations of him other than his own personal basic care, minor household responsibilities and simple errands and hobbies. He does things with me often…we go to the gym, shop, attend concerts or hockey games,also fairs, and festivals when they are in season and we both love to walk through all of the local metro parks in our area…it is a simple uncomplicated -but SANE life…and it took a long time to achieve, There are no fast fixes…there is hope and with age it seems in many cases the symptoms do lessen…usually after 25…just keep him safe and in treatment until then and things should begin to look up–the active symptoms get less and negative symptoms are more obvious like apathy, lethargy and general lack of motivation… there is hope. The free Family to Family class that NAMI offers was a wealth of education and support when I started my journey through this illness with my son. I strongly recommend taking it. In addition --you can apply for Social Security disability for your son, which usually comes with health insurance through Medicaid and it covers all treatment bills and if you are ever worried about your son becoming non compliant about treatment guardianship is the best thing to have to insure you can talk freely to his doctors and care providers anytime a crisis develops otherwise the HIPPA laws will keep you out of the loop. If you can establish guardianship (through probate court) you can also be his rep payee for his money so that none of the money can be used for drugs or to plan an escape or any other delusional activity, and it helps to support the things your son does need on a regular basis and it can be taxing not to have those benefits in place…just some facts I have learned over the years My very best you and your family. and…Welcome. http://www.nami.org/Find-Support/NAMI-Programs/NAMI-Family-to-Family


#4

Thank you so much for your insight. I need to keep looking forward not looking back. That’s so hard. I’m lucky my son is very cooperative towards letting me help him. He takes his meds , and he wants me to go to the Dr’s with him. He is on the road to stability. I made 23 phone calls two weeks ago to try and get him into some day treatment / activities to keep him from boredom and to keep his mind occupied so he won’t start focusing on the thoughts again. I am fortunate to have family members close that will take him for a few hours a day so he’s not alone all day long while me and my husband work. But I can already see where the stress of working and or school could push him over the edge. I kept telling myself this was drug induced and would go away. I was informed last week, nope its schizophrenia . But reading everyone’s stories here has helped so much. Thank you again for taking the time to listen to me. :grinning:


#5

I will find that! Thank you :heart:


#6

Anytime, I feel so fortunate to be in a better place today that if any of my experiences or knowledge I have picked up along the way helps another, it makes me feel like I can pay something positive forward, even if it is just a little hope.


#7

I am so sorry about your son. Like many of us here, I am experiencing a similar story to your own. There are many caregivers, parents, spouses, siblings, and loved ones that share their vulnerabilities, frustrations, love, and journeys within the many posts in this forum. I encourage you to take time, look back, and read the historical posts. There is such incredible insight and experience represented in all that has been written.

For right now, I just want you to know I hear your heart and your love for your son. I am so sorry that this thief of this illness has entered your family. I wish you the strength and stamina this marathon requires. Pace yourself, new friend, and know that you have found friends here.


#8

My heart goes out to you. My son was diagnosed paranoid Sz January 2013. It DOES run in my family. Never thought it would actually happen but it did. Believe me, we know how you feel about your son. It’s a sad confusing illness. If you haven’t read Dr. Torrey’s 6th edition of Surviving Schizophrenia, I recommend it. :broken_heart:


#9

Hello Pugglemom. Thank you for your story. I was in the same spot as you just last year. 21 year old son in college who had a psychotic break and eventually diagnosed with sz. I experienced the terrible grief over the loss of the son I knew and have now adjusted to my new normal with the son that I have now. He’s not less, he’s just not the same💖 I have been fortunate in that my son responded very well to the initial medication used and is compliant, has some insight into his illness, and lots of family support (cousins, etc…) to hang out with. He is significantly improved and is even back in college part time. It took a year to get to this point. The brain needs time to heal and I sincerely hope that you will see progress soon. There is reason to hope😊 Best Wishes!!


#10

It’s important to get him into some kind of routine, as much as he’s capable of. Does he have any interests and talents that could lead to volunteer activities?

Through Vocational Rehab, our daughter got a series of part-time jobs. just a couple of hours a week, then a couple hours a day. She knew people needed her and expected her to be somewhere on time to do specific things–that helped. The first was fast food–whoa, no! She couldn’t think that fast. Then came folding napkins–ugh, but she persevered! Then a cafe, but when she tried to wash dishes the regulation way she’d been taught, the cafe fired her(!); too slow. It took many months, but she wound up working at a nursing home, and eventually got a part-time job at one where she’s a valued team member and very happy (been there about 15 years now). We just have to make sure she doesn’t work too many hours a month, which could get her kicked off SSI.

Definitely go for SSI. It would help a lot if your insurance would pay for a neuropsychological eval, since lack of executive function (planning, carrying things through), attention, memory, and so on are typical of schizophrenia and prove inability to earn more than ~$900/month (I forget what SSI’s current earnings maximum is). Keep a file of all paperwork, including a npsych report, MD records, applications, job activities, etc.–necessary documentation for SSI.


#11

I actually contacted voc. Rehab. They said they would love to help him but he needed to be stable first. I really kept telling myself this is short term, maybe drug induced so I didn’t want him on SSI. But now I understand it’s not short term and that will be the next thing I do. Our system here takes 2 months to get on medicaid, if they accept him. Big pain in the butt! But really we are keeping things mellow with him and things seem to be calming down. I guess the new reality has set in. It’s so hard when you don’t know what to do to help him, he doesn’t know what he wants or needs , and no one was telling or offering what to do next. But I think we all just needed some time to adjust. I am so happy to hear that your daughter works. I really think my son will be able to some day. It is still kind of surreal. I am so grateful for the insight and support of the people here. It has been life saving! :heart: thank you!


#12

It is a big adjustment for him and you. Hard to believe that this illness came just show up. May have been symptoms before, but excused away. My son has been SZ since March 2012 , in and out of hospitals, due to going off his meds. Now he takes dissolving pill, Olanzapine because he would fake taking his meds. Now I know he is taking it…He is doing much better but don’t know when he will work again.He gets SSD and Medicare/Medicaid. First time he was rejected, and I hear that is the norm. Second time, it went through. He was a drummer, and played in various bands. Now he has taken up guiter and says he is going to get lessons. Easy does it.


#13

That is great! I watch my son slowly getting his personality back a little. In the beginning the meds left him a lump of dough. Now he’s starting to talk and engage more. That’s so nice. And you are 100% correct. He tells me he had always felt that he was a little crazy his whole life, but it’s now getting worse. He says he thinks it will just keep getting worse. I think the hardest part was that he wasn’t depressed, he wasn’t suicidal, things were looming good, he was working full time loving his job working overtime and saving every dime to get his own apt, then the weekend after his 21 birthday (where he partied with his friends) he just started talking crazy delusional talk about the universe and dimensions and he needed to die because he was the 2nd Jesus. That was the 2nd week of December 2016, and reading his journal entry last week he still believes it.


#14

Hi my son is now going to be 30 on the 19th march. He had a breakdown when he was 19 he has been hospitalised 2 times . He has never told me about his thoughts but I have done a lot of research to find answers, but there really aren’t any. He doesn’t take any meds as he says there’s nothing wrong with him. Reading all your posts gives me so much hope . Thankyou .


#15

You are so supportive,I dnt feel alone anymore Thankyou .