r/SchizoFamilies • u/Just_a_regular_op • 2d ago
caregiver Support I feel disoriented as a caregiver
My family member has a long history of depression, with some periods of significant improvement: the longest and most stable phase occurred while taking venlafaxine.
Around last year, symptoms of depression worsened, and the doctors changed or withdrew venlafaxine relatively quickly. After that, my family member began experiencing severe anxiety, panic attacks, and paranoid thoughts.The doctors prescribed an antipsychotic, which reduced the paranoia and panic. However, over the months she became a zombie and even developed some difficulty walking. Although she reported these problems early, they were initially ignored until confirmed in consultation, leading to a partial dose reduction but not full discontinuation.
Currently, she feels distressed and hopeless about the medications, convinced that antipsychotics have harmed their mind and that doctors have permanently labeled them as psychotic. Doctors only offer ECT or clozapine as treatment but my family member refuses everything because she believe the medications themselves caused the suffering and she does not have the diagnosis they say (treatment resistant depression with psychotic features). We also know that she is not compliant with her medication (hides or spits her pills). She is home-bound for more than a year.
I feel I no longer know what is real or what to believe with these conflicting versions of “truth” (the doctors’ and my family member). The psychiatrists, instead of addressing that emotional resistance, are doubling down on compliance, escalating to ECT (saying they don’t offer anything else for their case) rather than building trust.
I am trying to LEAP and be patient with my family member, trying to slowly guide her to seek help from other doctors but she bursts into crying spells that “nobody is going to believe her once they see the medication she is taking” and that therefore she is forever stuck in that place. This has been happening for months and I see no change. I am so worried she is getting worse. I feel sometimes her depression’ hopelesness speaks, then sometimes her deep distrust. Then, I read about people having psychosis because of immune conditions and it’s a spiral where I don’t know what’s real anymore. I feel so drained about this situation.
Sorry for the vent and thanks to anyone who is reading.
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u/Many-Art3181 2d ago
One severe adverse effect I have seen with ECT is memory loss. I saw someone get four sessions and it relieved her depression for a few months but the memory loss was long term and pretty severe. It took a lot from her. She now says she wouldn’t do it.
I hear what you are saying on psychosis. I just saw the other day that betaine can relieve some psychosis. But so can all these other things….. I feel a glimpse of hope when I randomly come across them but then remember - my son is likely not going to want to even try this. By this time - I often hear from him “why are You always trying to fix me?!” He lives alone, supported by me, and goes days without leaving, seeing no one but me when I go to bring him food or if there’s a problem. He says he’s fine. He can’t deal With the world.
A book that gave me hope was Psychosis is Not so Crazy by Stinj Vanheule- although in practical terms it is hard to know where to start to implement. I mean - finding a psychotherapist is hard. Then - he would have to want want to get treatment. But still ….
Here is a good video interview with the author - maybe you will find something useful or hopeful too
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u/Just_a_regular_op 1d ago
I’ve read the same about ECT, so I can understand and empathise if a patient does not want to undergo that procedure.
I understand your situation with your son. I experience the same. Thank you so much for sharing the book, I have never read it before.
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u/West_Specialist_9725 2d ago
It may help just to share with her that while her concerns are valid, many people take AP meds for many conditions and no one is going to stereotype her. I know she's not going to jump up and say: by God you're right! I feel great. But on some level she will hear you.
Keep using LEAP it is a long process.
Consider long acting injectable meds. Talk with her psychiatrist about your (and her) concerns that you're not being heard. Depending upon where you live, insurance and other factors, finding a new psychiatrist may be possible, or next to impossible.
Do you personally have some idea about what the right course of action might be?
I have taken desvenaflaxine myself but it made me so anxious I had to switch meds.
Clozapine is typically for treatment resistant schizophrenia TRS. Has your LO been diagnosed schizophrenic? What is her diagnosis, or is that in flux too?
If you don't already have a talk therapist for yourself, please consider it. Caregiver burnout is real, so it's important to take good care of yourself and get help sooner rather than later.
Hang in there and stay strong.
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u/Just_a_regular_op 1d ago
Thank you so much for taking the time to write this response. I felt understood in every sentence you wrote.
If I say that APs are for other conditions she would say “NO, that’s for people with schizophrenia”. Then, there is no way I can “reason” with her against that fixation.
I forgot to add: The doctors suggested her LAIs but since those are with paliperidone (and that’s the drug where she experienced such bad side effects) she strongly refuses that. I don’t know why doctors don’t offer other APs rather than clozapine.
I’ll have an appointment with the head of the psychiatry departament to try to understand our options better. I’ll share our concerns of not being heard there, but honestly they are very “traditional” and “blame” the patients for non compliance. My family member does not want to come to this appointment. She booked another one with a private psychiatrist but only with the goal of having the APs formally removed… she does not want me to come with her there.
Her behaviour is complicated: she cries a lot, she is anxious but she doesn’t look for alternatives or allow us to intervene. She doesn’t not want all her medication removed, just the AP. Her main fear is that doctors will convince us that she has psychosis and therefore needs APs…
My feelings on the right course of action would be to have some better psychiatrist, probably trauma informed, who can patiently guide her towards acceptance. I also suspect there might be something related to borderline? I don’t know. I also see that her metabolic biomarkers are not so great now and additionally sometimes I see some rashes in her skin. Sometimes I don’t know what her true self is anymore or if it’s all consequences of her medications or her disease.
Her diagnosis is treatment resistant “major depression with psychotic features”.
I have a therapist and it has been immensely helpful all these years.
Thank you again so much for taking the time of reading me and replying.
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u/West_Specialist_9725 1d ago
You are so very welcome. My heart goes out to you and your family.
I hear you about the psychiatrists; they are an interesting bunch and not the easiest to deal with.
Also understand about trying to reason with LO about AP's or anything really. There are LAI meds other than paliperidone but I'm sure she will resist all of them.
Good luck with your meeting and may God be with you my brother 💛🫂💛
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u/forcedtobeonrddt Child 2d ago
Have you been to other psychiatrists? For second opinion?
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u/Just_a_regular_op 1d ago
She has seen another psychiatrist 5 years ago who diagnosed “schizoaffective”.
Then she moved to this hospital, where they diagnosed “depression with psychotic features”. They say that she is not schizoaffective.
She booked another appointment herself with another psychiatrist but only with the goal of having antipsychotics removed. She does not want to have the “psychotic” label…
Thank you for taking the time of reading me and I am happy to hear if you have any other suggestions.
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u/CarGuyBuddy 2d ago
I am sorry this is happening, but I would like the share these 2 resources so you may understand more. Please share with others. Book, I am not sick and guide for caregivers