My son continues to make strides. He has been sleeping more regularly, has continued to communicate more, has not been smoking weed (I am afraid that is just because he has no money at the moment), and has been working steadily at a new job. I have introduced the idea of CBT (and indeed have been practicing it somewhat on him) and he is not opposed to trying it out. I also have spoken of medication in a very non-confrontational way, and he is at least not completely freaked out over the idea. I would love to have him on Clozapine, but that is probably a distant goal.
Today I am wondering if any of you have had experience getting a loved one into therapy without medication. I found a CBT therapist in my area that listed that she works with people with psychosis, but when I contacted the clinic where she works I was told that they could not take on my son as a patient. I am assuming that this is because he is unmedicated. I truly believe that he could benefit from therapy even though he is not medicated. Have any of you had any success with finding therapists that are willing to work with unmedicated patients?
What I got when asking a therapist abt it was that no much can be achieved if the patient is not on meds. So it could be a waste of time and money. However there could be value in having your son with a therapist if this can help him in getting used to the mental health system, which can increase his chances of seeing a psychiatrist, for instance, or that he develops trust with this therapist and she/he can refer him to a psychiatrist she trust, etc.
I have found it very difficult to find a therapist that has training in psychosis. They are worth their weight in gold.
In our NAMI family class, we all pooled resources one night and discussed who were thought to be good doctors and therapists in the area. That’s how I got a therapist for our son.
We had a dr once refuse to see our son because he was psychotic. It still makes me angry. In my experience dealing with sz, the therapists are there to help regardless of the situation. Our son actually was medicated but the meds were not working when he went to his first appointment with his therapist. He was so anxious that he couldn’t get out of the car. I went into the office to cancel and instead his therapist came out to the car and had a first session with him through the car window.
After 2 more weeks, he was ready to meet her in her office.
It has made a huge difference for our son to have someone else in his life who he trusts.
Also, she has seen him at his worst, which is hugely helpful going forward.
I imagine that a therapist who won’t see your son because he is unmedicated is not the right therapist anyway.
Good luck! In my opinion a good therapist relationship is as important as meds.
My son’s first therapist for CBT was recommended by his psychiatrist. His current therapist he found on his own. Since he is unmedicated and has the symptom anosognosia, he most likely did not mention scz.
He always has a clear purpose for what he wants help with when he sees a therapist, sometimes it’s just someone to talk to. My guess is they probably focus on helping him with whatever need he expresses.
In my case, my first psychologist asked me to see a psychiatrist before continuing treatment. I feel it was largely to protect her liability. Initially refused psychiatric treatment, but after a year of twice-weekly psychotherapy I asked for a referral to a different psychiatrist and began neuroleptic treatment.
Insurance may play into this. Some insurance providers may refuse to pay for therapy to the unmedicated, and this may play into whether psychologists accept them as patients— either out of fear they won’t get paid or affect their relationship to insurance groups memberships.
I think this is definitely what is pedaled here in the US, but I am ready to question this. Outside of a crisis situation, it seems so much more likely to me that I can get my son to do therapy then to take medication.
@Hanginginthere I love this story. What a great therapist she sounds like - willing to work with the client as they are.
@hope How long has your son been in the CBT therapy? How often does he go and have YOU seen any gains from his doing therapy?
@Maggotbrane I find it immensely hopeful to hear that you started with therapy and only after began the medication. Do you recall your thinking around the issue of medication? What caused you to want to give it a try? Did you find the therapy useful when you were unmedicated? (Sorry to bombard you with questions. You are such a blessing to all of us!)
My son initially did CBT for one year. His psychiatrist had told him that CBT would help him deal with people (voices) yelling at him in grocery stores. My son had not grocery shopped in a couple of years at that point. The therapy worked and he still grocery shops for himself.
He returned to therapy a few years later for help dealing with his landlord. Again he had success as he is in the same apartment.
Yes, I was clear that I didn’t think it would change anything, but was willing to give a try to minimal medication. The psychiatrist talked to me for 10 minutes, largely ignored me and my wishes completely and attempted to prescribe four or five medications. I walked out and never returned. In contrast my psychologist spoke to me for over 3 hours in our initial consultation.
Out of fear I would lose my job and recognizing I was decompensating.
Yes. I felt heard, supported and felt my self esteem and coping mechanisms were improved. I was able to sort out some problems without judgement and able to find some clarity. While eventually it led to a psychotic break and hospitalization, I had laid a good framework and trust to proceed with recovery afterward.
Mine is not a typical case, and I often say psychotherapy in my case acted much like the LEAP system. Rather than repeat myself and tread well-trodden ground, I invite you to search my posting history if you are interested in a more detailed account.
I think it depends on how severe the psychosis is. My son, who is now medicated, says that when he is psychotic the psychotic reality is overwhelming. The psychotic reality is the reality and the combination of the voices commanding various things and the context in which they are saying it all makes sense.
Put another way, talking back to the voices doesn’t make sense, because all they say is true.
Meds took away the delusions and the voices are 1 and sometimes 0 on a scale of 1-10.
I think the voice level and the delusion level have to be low for CBT to work. It might take meds to dial down the voices/delusions.
Not in my experience. (albeit my psychosis may have been mild compared to your son). A great deal of the torment of voices is that they challenge or contradict your accepted reality which you fight to overcome. Much of my debate with my voices was standing up for my ego self, and counter programming their mostly negative (and to my ego self, false or misleading) narrative. In essence my imagined “head canon” of what “real” CBT is supposed to be. I did this without revealing it to my psychologist with whom I largely conducted supportive therapy with problem solving and dreamwork sessions. As I have a scientific background and training, my “voices” were always viewed with skepticism and I was conscious of the possibility that they might not be real, yet I still hold to a possibility of an alternate reality or time-line where they might have been real, so strong is the experience of hearing an alternate narrative.
I caution people who have never heard voices, not to attempt to speak for people you don’t have a shared experience with. While we may have big shoulders, it has the potential to be mildly offensive or patronizing to us in mixed spaces. LGBTQ+ people and people of color are more vocal of such concerns lately, but neurodivergent people sometimes share similar sentiments even if we don’t voice them. I realize no harm was meant, but reading books on the subject and interactions with a sampling of hearers, is not a substitute for an often indescribable and individually unique experience.
I have a shared experience with my son. He lives with me and I’ve been through the 4 psychotic episodes that have led to his 4 hospitalizations. I’ve seen what the command voices can do to him, which have resulted in harm.
What I meant by “true” is that in the alternate reality the voices are stronger than what he can contend with.
@Steadfast, it is great that you can help your son without medication. I was against medicating my daughter at first, but her voices/delusions were so terrible they ruled her life negatively.
In my opinion, if your son can deal with life while hearing voices/having delusions, then therapy to help him cope is very much more preferable than heavy anti-psychotics which will be required lifelong (and could have serious possible side effects). Finding a therapist, finding a therapy that works, cooperation from your son are all hurdles to be handled. Also professionals change. Just because a doctor says they won’t see a person this month, doesn’t mean the same doctor might won’t take on new patients next month. It pays to call back again and again. I went through a myriad of “ways” to help my daughter before her psychosis “dialed down” and efforts to help her live a life outside of screaming in her room actually brought results. But for her that meant heavy forced medication. She wouldn’t attend therapy unmedicated or medicated. We tried a few times in different places. But I think that isn’t true for everyone affected with schizophrenia.
Now her voices don’t take over her life. She is finally comfortable with telling me what her voices are saying, but that took years of meds to bring about. She told me just today that her voices are real people who have bodies in other places than here in Florida, and they speak to her while they are out of body. I just listen to her and respond noncommitally. Voices no longer cause her to take harmful actions. I do wish she would /could go to the therapy and or support groups offered to her, but she won’t. Her weight gain, extra sleepiness and other unknown side effects worry me, but she would have had no life outside her room without medication.
Keep trying to find therapy or a support group to help your son. I hope things line up for your both.
Very similar experience here @oldladyblue. I think the minimum effective dose of a medication needs to be found, but I’m no longer anti-medication after some of the delusions he’s told me about. No one could function in such a world.
I wonder what dealing with life looks like? Yesterday my son worked a six hour shift in a fast food place, ate dinner with me, went for a walk with me, and watched an entire television show with me. Any questions I asked him, he answered. When I went to bed I could hear him yelling at the voices in the backyard, he can’t pick up after himself, he smokes like a chimney, and his personal hygiene is atrocious. Is he dealing with life?
@caregiver1 I am neither for nor against medication. If it were up to me, I would try him on Clozapine starting today. Ultimately I am just trying to find a way to help my son that doesn’t involve crisis. We have tried crisis and all it has lead to is very temporary medication and a complete distrust of the medical establishment. No gains whatsoever.
@Maggotbrane I totally get what you are saying about speaking for voice hearers. I think one should always strive for compassion without assumption in dealing with anyone else’s suffering. I also understand what @caregiver1 is saying. As caretakers we have very real experience of what a voice hearer goes through in dealing with external reality. We live with it everyday.
Funny it kind of reminds me of something my husband said yesterday. i pointed out to him once again that antipsychotics were something that makes us feel better, not necessarily the person suffering. (That quote that says: “Psychosis is a situation in which I’m struggling so much that you notice and you want me to take drugs so you can feel better.”) And he said, yes, exactly, that’s why they they are valuable.
In my experience, this really depends on the individual. Its too easy to make that generalization and it just doesn’t address how individual the presentation is in our family members. We all tend to search for similarities between our family members, maybe its just our brains trying to work on the “puzzle” we see in front of us.
My son’s psychosis is constant at this point in his life and it does routinely cycle to extremes. There is a good chance you are correct and CBT does not help him a good deal during those moments. I really have no way to know.
CBT isn’t about “talking back to voices”, but maybe that is not what you are saying? My understanding is that the therapist helped my son modify his behaviors to enable him to complete his grocery shopping without causing any disturbances or becoming overwhelmed and having to leave the store.
I would like to think I am for meds, I haven’t had enough experience with them in my son’s life to be knowledgeable. I still haven’t stopped trying to get my son to try AP meds. I think his life might be easier on AP meds. His life will be shorter without them, well, maybe, what do we really know about alternate paths? My son tells me he enjoys his life, he “deals” with the ups and downs in the ways he works out for himself. My husband and I are always ready to do what he will allow us to do to help him. He calls us when he needs helps.
According to Dr Torrey only 30% of the population with scz is medicated. The unmedicated are always in the majority whether their family members like it or not.
@hope good points all. You’re right, I’m generalizing and everyone’s experience is different.
When I say “talking back” to the voices it’s because they are commanding him to do almost everything that’s harmful. I think they need to be forcefully disputed.
Interesting that only 30% of people who have SZ are medicated. If a person can get by without meds that would be great, because I think it’s very possible they do damage long-term. At least that’s what the anti-med people say and there are a lot of them.
My son, right now, can’t get by without them. The delusions were too powerful and often urged self-harm.
That is really interesting, does that work for your son? My son always attributes the voices he hears as belonging to the person in closest proximity to him. He does talk about these moments quite freely because he believes they are real. He once told me he must have really good hearing because he could hear what people were saying about him from a long distance away. (Confabulation - the scheming cousin of anosognosia is always at work.)
Some of his voices call him rude names and taunt him mercilessly. He doesn’t ever talk about his friendly voices. We only know they exist because we have heard him having pleasant conversations he was enjoying thoroughly. It was though he was talking to a dear friend who had a wonderful sense of humor.
Its really sad because I am left wondering how much better his life would have been if he had taken AP meds.
@hope Some of the voices are live people who communicate telepathically. Some he knows and some are political figures. Sometimes they are dead people. Sometimes they come from outside, like they are in the room. Most of the time they are critical or ordering him to do things against his best interest. I don’t think his voices are imagined voices from nearby people.
I thank God that nothing really bad happened before he got on his latest meds (20 mg of olanzapine and 600 mg of quetiapine) and the voices have gone away for the most part. His doctor has said he’s going to start tapering the quetiapine soon, which I hope he does because I read a paper that said that more than the maximum whether for monotherapy or combination therapy, where dosage is measured according to some equivalents standard, is not a good idea.
The voices were accompanied by delusions and visual hallucinations and could be quite frightening.
I understand your frustration @Steadfast. Based on my experience with my daughter when unmedicated, yes, your son is dealing with his life and illness in his way. I know people without schizophrenia who do less in their own lives than your son does, basically hibernating alone in a filthy apartment barely existing on canned food. Living life is a scale in my opinion, with dead at the bottom and totally 100% alive and in control at the top. Both ends are obviously not where people exist, but in the middle of the scale there is a wide variance of “living life”.
My daughter could not work, hold conversations, answer questions, and didn’t notice her decline into being a hermit locked in her own room screaming at voices. Before her schizophrenia she was working, pleasant, artistic, and living her life. Her life disappeared before my eyes. Nothing helped her except haloperidol forced on her after 5 Baker Acts and 2 arrests. Now she is again working, friendly, and living life, if not her old life. Without my help though, she would be lost. She is messy, purposeless, no longer does art, or much of anything except work and go to the movies or the gym.
I know you want more for your son than what he is currently capable of, but his pre illness self and his post illness self will most likely be always very different.
In the beginning, the first 6 months, my daughter could “silent” talk to her voices and could work. If her psychosis had not worsened, the next 2 years of unmedicated bare screaming existence wouldn’t have happened, but it did worsen terribly.
It is so hard to watch the illness, and harder to be a caregiver, but make sure you still celebrate who your son is and what he can do.
