My son was diagnosed with schizophrenia about a year ago. He was crazy brave (pun intended) and asked for help as soon as the hallucinations started (20y). He went from having a vibrant life about 350 miles away to having to move home because he couldn’t work. Pro- his girlfriend is here. Con - he lost his best friend and roommate over the wackiness that comes with all of this. I got him in to the best psych we could find in our very remote community. Initial meds caused 60 lb weight gain. Meds changed and he’s made some headway. {Background: he’s always been obese (as have I) but a massive snow machine accident (read major TBI that resulted in a metal plate in his skull) made him rethink his life.} He lost the weight and did great for 2 years. Then, suddenly, he had a new challenge.
The last 2 months, symptoms have gotten increasingly worse. We don’t know if this is just a bad episode or if he’s declining. He ditched his counselor (to my applause) after the guy told him he just needed a “happy light” (10k Lumens for use in the Arctic).
He tried to go back to Uni but had to take the last week off because of voices demanding him not to go. He’s got a good support team there, but his professors are encouraging him to drop his classes.
He’s also an incredible masker (we had a tough life when he was small), so people talk to him and have NO idea how bad things really are.
Honestly, when he told me today he only made it through half a class because the floor was moving, it was a struggle not to cry. Because I’m scared if I start crying, it’ll be hard to stop.
I’m looking for some advice on what to do next. As a counselor, I’m aware of what some of the inpatient programs look like in our area and he’s “not a threat to self or others” so there’s no reason to put him through that hell. I’m just very lost.
Hi Annie_Krause,
In our “beginning” my husband and I attended NAMI’s Family to Family class. In some ways, it was the worst class ever, these people just didn’t have good news for us. They were busy trying to help us see some realities. We were fortunate to be among the class members that believed what they were telling us.
The class gave us successes. After the class we were able to put together a realistic plan. We understood their message that the most we could expect our son to do was one thing a day. HIs whole world had shifted and changes were going to take years going forward. (I have to tell you when they said “years” in class, that was a hard moment)
I know right? Is my son declining when he has an episode or is it just a bad day/week. How are we to tell the difference? On this forum, people who have their family members on meds always, always, say “call the doctor, they can adjust the med”
Your son is willingly taking meds and is talking with you about his struggles - this is wonderful news.
I am guessing that your son needs to do less going forward. We do hear about people who take their meds and jump right back out there into life. Our experience was like they taught us in class. My son had to work gradually to get his life back together. He did try going all out 100% and that failed. When he lowered his expectations and simplified his life, he found success.
My son did (eventually) get his start moving forward by working with a cognitive behavior therapist. His life is still a simple life, but it has brought him a good deal of satisfaction. He always wanted to work, he just couldn’t do full-time hours. He was pleased and proud to be an Uber driver.
Welcome to the forum.
My son didn’t really start recovering until the voices went away. I know there is a “voice hearing” movement where you learn to deal with the voices, but my son says they are too disturbing to be able live with them.
So, if your son is still hearing voices, maybe a dosage adjustment is needed or a medication change.
How long before the Sz diagnosis did the snow machine accident happen? Would it make sense to have him evaluated by a neurologist to make sure the TBI is not causing the voices, in which case the treatment may be different.
Thank you SOOOO much for explaining it took your son a while to find what was a comfortable growth pattern. I’m working on it - with him, my parents, and my SO.
I so appreciate the feedback! Blessing on you and your son!
Peace,
Annie
Thank you for your feedback! Time between TBI and diagnosis was about 2 years. We’ve seen a couple neurologists, and all they can say is it’s not epilepsy.
The academic journals I’ve managed to read do say that a TBI in the frontal cortex can exacerbate sz symptoms, but I guess we’ll never really know. There are also folks in my matrineal line who had/have sz.
Thank you again for your time in responding to me - it’s so nice to hear from other parents dealing with the same issues!
Peace,
Annie
One of my clients responded perfectly to the medicine called Abilify, for many years, after decades of fruitless searching for a prescription that worked. You wouldn’t even know she is schizophrenic unless she told you. Other clients are on many combinations of mental health prescriptions and that doesn’t seem to go as well. I would talk with your son to set goals and follow that. It sounds like he needs to be on Social Security Disability with Supplemental Security Income, as you are not always going to be around to care for him. It sounds like his goal should be to get through each day without going nuts, while groomed and socially active. I would not expect him to be in any situations like classes or work, where he can’t exit or have a meltdown. I would set the expectations just to the point of getting by with grooming, so he is social, and having hobbies, interests, weekly optional activities , maybe volunteering, relaxing, and having an online social life too. Classes should be just for kicks and self-enrichment, not to lead to more complex roles. A lot of schizophrenics live in group homes but you’d want to find one where he is allowed his car (if he drives) and where outside activities and social life are encouraged.
I work with schizophrenics who can barely get out of bed due to anger at rude voices, who look like crap because they don’t even know to ask to own a little mirror and groom themselves. They gain weight not from their medicine exactly, but they overeat and constantly ask for food because they have nothing else to do. They are not interested in the rose garden, the workout gym, the outdoor pets, the covered patios with comfortable furniture, the big screen, making a special food, or even taking a walk on the large grounds. They yell and get mad unpredictably, or their only social life is on the Internet. Your son sounds like he is doing much better than that.
I don’t mean to annoy you but those full-spectrum light bulbs or even a turtle basking bulb are really helpful for reducing inflammation as well as increasing contentedness. I am not schizophrenic and I own two of them. The ones from the hardware store are great. The basking lights from the pet store are more difficult because you have to have a 250 watt lamp, which is uncommon.
Whether he is with you or in a Medicaid home, it would be nice if he had a couple chairs in his bedroom. Sometimes residents don’t have the strength to come out, and visitors in the room shouldn’t tower over them. Regular dental care is important because dental Hell is as bad as schizophrenia. Tell your son to try some mental exercises. Have him recite the alphabet over and over and over and then afterward listen to the voices. Sometimes this stops them or they just babble the alphabet. Also, he can learn the alphabet backwards, which very few “voices” know and if he hears them repeat it backwards, he’ll know that what he is hearing is probably not real, since very few people know the alphabet backwards. He’ll know it’s robotic in nature or just a brain fluke. Other techniques are to memorize weird things like doodads from other languages. For instance, counting to ten in Finnish, or reciting a Mexican poem like Tin Marin de Don Pique, cucara macara titere fue. Yo no fui, fue te te. Pegale, pegale, que ella fue. Since very few “voices” know Spanish, he could see how far he gets with that, in quieting them down or hearing them robotically echo him. The voices are like children because the things they say are taunting and nonsense. Who would listen to children teasing you? Not me. And not him. He shouldn’t give them any more respect than you give a bratty child. There is no sense in respecting fools. I’m sorry to lecture but I strongly believe schizophrenics give way to much credence to the voices they hear. It’s garbage and maybe self-esteem classes would help. Affirmations of self-love could help. We all hate criticism and taunting, but once you know someone (or some voices) are doing it on purpose, then you realize they are disrespectable and you no longer really care what they say because you don’t respect them. I don’t know if that will help him, but my clients benefit when I say the voices are just naughty children, who cares what a bratty child thinks.
Go ahead and have your own tears and grief. If you don’t grief the losses he and you are experiencing, part of you will be shut down. You’ll lose the bad with the good. A long time ago, someone I knew died traumatically right in front of me. It was so gory that after a few months of being haunted, I shoved it out of my mind and never thought about it again. But I failed to remember the good times, too, and after 10 years now, I can barely remember the person even though we lived together for 9 years. I mistakenly threw out the bad with the good. It would have been better to process the grief in increments, and to be deliberate about it. If you do grieve, you will eventually stop, if for no other reason than sleep or hunger. And the chemicals your body makes to help you feel better might lead to new insights. Getting past the grief opens up new space in the brain. You are fortunate he’s strong - he must be strong is he is a masker. So if he sets his goals realistically, and has financial support, he can have a good life.
Perhaps there is an intensive outpatient or partial hospitalization program near you?
It is hard not to fear the unknown, Did your son have the accident over two years ago and then a year ago the sz symptoms? I know that for some sz symptoms arise as the result of brain injury. It is really hard not to fear the unknown, but most people are greatly helped by medication.
Clozapine was the med that proved most helpful for my son. He still hears voices, but they are less troubling. Less hostile and less intrusive.
Thanks! He’s medicated but the voices and visuals have been extra bad the past 6 weeks. His accident was about 3 years ago, but it probably a major contributor to the onset of sz symptoms. I also had a great uncle and a second cousin on my Moms side who had it. We live in interior Alaska so no real programs here other than the ER. If hinges don’t change soon though, he might have to go stay with some relatives in the lower 48 for more intensive care. Shoot, I might have to quit my job and go with him. Thanks for responding to me - this forum has been a Godsend!
Peace,
Annie
marybost, I’m glad I came to take a look to the updates and read your reply to Annie_Krause. I take it you are a CBT therapist. Your suggestions seem to help others and certainly I’m considering to try them with my son.
I thank you so much for allowing us to see practical ways we could try with our loved ones.
Thank you kindly.
I’m glad some of it might help you. I probably should have been a therapist! Instead, I’ve learned a lot the old school way of trial and error, lol. Best wishes. I know it isn’t always easy. I’ve had some hard days too!