Hi all, I’m new to this group and I’m DESPERATE for advise. My 24 yo daughter was diagnosed with schizophrenia about a year ago. She refuses both medication and therapy, but is sitting in her room delusional and cut off. She has tried to work, but both times quit her job after a few weeks. Does anyone have any tips/tricks to get her out of her room and engaged with a therapist? I’m open to ANY and all suggestions!
Hi, I’m new here too. My son has been this way also. Locked in the room. I’ve been trying to find ways also. I have had him take the dog for a walk when I’m not home to potty. This has got to making matters worse just locked in the room alone. I hope there are good reply’s and advice. There is another post on here “finding ways for my son to talk” she had sone great strategies.
@Maggotbrane We need your wisdom linked here for these searching souls.
My advice is to find some way into their world. I can only speak on our specifics, but for us, it’s a shit-ton of conspiracy theories. Initially I’d argue with him re flat earth, or 5G mind-control, or vax/pedophilia/satanic/bizarre stuff. Only made it worse.
Turns out he/we needed LEAP and other techniques for me to engage, gain trust, and learn to interact.
Once I broke through this wall, we had something to discuss. I’ve viewed hundreds of hours of some of the most bizarre, dark conspiracy theories. And followed rabbit trails of an incredulous variety.
It has sucked. Often I’ll lose patience and attempt to argue some ‘obvious’ point. But it always ends badly. Sometimes violently bad.
So the trick for me is to engage my child where they live. Seek to understand their delusions and perspectives, however twisted. For my son, it’s critical for me to believe him. If I turned my back or disregarded his perspectives, he’d be gone. Off meds. Suicidal. Homeless.
So I seek to love, empathize, listen, and keep finding some small way to move things forward. For example, “yes, I can see the eventual takeover of the new world order, and/or satan attacking you, but let’s think what we can do today…”.
Sometimes it seems to improve. Sometimes not. But don’t give up. Love wins.
First, take things one step at a time. Maybe it’s best to understand why your loved ones might want to stay in their room before you try to motivate them to take first steps step outside, more steps to a therapist’s door, and if you’re lucky, motivate repeat engagements.
While it’s better to get this information directly from the source, I realize diagnosed folks aren’t always forthcoming or aware of what’s keeping them inside. Here’s my best guess of the experience of your loved ones, based on extrapolating from personal experiences:
First realize when you have active untreated schizophrenia it’s likely you’re overstimulated by everyday sights and sounds. Everything sounds too loud, sounds overlap, lights and colors may seem too bright, and even if you aren’t hallucinating it can be hard to follow conversations or even concentrate to the point you can hear yourself think. If you have active “voices”, they’ll contribute to that cacophony. While you can to some extent learn to tune the noise out, it gets harder and harder as you leave your most familiar controlled environment—namely your bedroom with your shutters or drapes drawn. So one reason you might prefer your room is it feels familiar, safe and controlled.
Second if paranoia is present, there’s a paradoxical relationship between your environment and the dynamics of paranoia. Delusional systems built of feelings of paranoia tend to elaborate the longer you stay in one location. Think of them as stories your mind makes up to explain sounds, hallucinations, observations and feelings you have about your surrounding environment. As you stay in one place, you collect more and more of these as you observe more an more “clues” that inform “the conspiracy”. The paradox lies in there’s comfort in this conspiracy. Your feelings of anxiety related to paranoia are grounded in specifics. That is—you understand the conspiracy, your feelings can be understood, are justified and there’s a source and, if personified, a villain to blame. And you’re occupied with a full time job of trying to collect more “proof” to convince others of what you’ve learned and unravel the conspiracy and be the hero.
Contrast this with leaving your room which to undiagnosed eyes it might seem a welcome “escape”, but it’s not that simple. You might develop even more terrifying and disorienting “free floating” anxiety akin to panic attacks. Fear of the unknown is often more unsettling than a known horror. You sense of purpose can be shattered as you feel threats are everywhere and the feeling is disorienting. It can be a case of “the devil you know” being preferable to the one you don’t.
In my case, I developed a form of Stockholm Syndrome with my imagined “captors” (I had the delusion I was surveilled by the FBI from next door) culminating with an incident where I left my home and travelled to an imagined “safe house” where I would enter a witness protection program and join the FBI a la Frank Abagnale. This led to a run-in with the police and a hospitalization which luckily worked out for me, but this was after regularly seeing a skilled psychologist for a year and other supportive activities outside the home. It could have easily turned out much less favorably.
This leads me to my third point: I think you should consider that at times your loved ones staying in their room might be safer for yourself and others, as well as themselves. There’s unpredictability when engaging the SMI, especially when arguments and conflicts escalate with unfamiliarity with the individual or mental illnesses. Given the criteria for involuntary commitment and hold is demonstrating potential harm to self and others, care should be taken not to encourage the SMI out of their rooms and into public when they are in crisis. I feel there were times I intuitively sensed it was safer for myself and others if I stayed at home in my room, and caregivers and everyone involved might be better off if they trusted and respected this intuition. There’s ample evidence on this forum of a familiar yet distressing pattern: withdrawing to one’s room, often times without sleep, and emerging to lash out at family members, inanimate objects or worse still out into public—who knows where—culminating in hospitalization, incarceration or disappearance.
This background out of the way, let’s turn to how you coax a diagnosed person out of their room, if you believe they’re ready. Consider how you might make them feel safe. Some of this depends on what an individual might be specifically afraid of, but a few general rules apply. Picking times and places where things are quieter and there are fewer people around is best. Familiar people and places can be reassuring as long as they don’t trigger delusions, hallucinations or anxieties. Animals and natural settings can be comforting, but until you’re sure they can feel safe, don’t expect the diagnosed to be comfortable with or enjoy venturing out alone. Going out for drives or driving is often especially comforting, because it’s a private enclosed space safe from onlookers that’s hard to surveil because it’s moving and has inherent background noise to mask exterior noise that might be misheard as hallucinatory or delusional content.
Consider also exposure time in relation to stimulus. They might be able to tolerate a quiet library much longer than a noisy diner. I found I could built up a tolerance to certain environments by slowly increasing exposure. Likewise allowing for exit strategies if the diagnosed become overwhelmed or fearful is important. They need to be able to trust that they can escape disturbing environments or people should they need to without question or justification. Arguing in these situations or saying it’s all in their head will breed resentment and distrust and erase any gains you may build together. Surprises are often unwelcome and unsettling, so it’s important to have a clear plan for outings. Don’t “spring things” on diagnosed people until you know they can handle it.
While activities require teamwork, bear in mind that motivation plays a key role. Remember first that human inertia is what’s keeping them in their room. You need to compete with their feelings of comfort and control of staying in their rooms, and justify why they should take the risk of leaving. What’s in it for them, why should they take such risks, who might they see, where might they go?
The experience of COVID lockdowns may prime such a mindset in you in ways you hadn’t considered before. Remember the sorts of preparations required for going to the grocery store when before you wouldn’t give it a single thought. And how strange the first time you went unmasked to a restaurant felt. Yet you did it because it was important for you to feel “normal” and be with people you cared about and have a meal, so you took a bit of a risk and left an established comfort zone.
Similarly you may motivate the diagnosed to leave their rooms, say to have tea in the breakfast room or be braver and head to Starbucks or wherever and whatever they might like. Maybe you move their TV or computers out of their room, so they have to go into a public area to use them, or eventually go to a friends house or library or movie theater etc. The who, what, when, why and how is all very individualized, but presumably you’ll know what’s motivated them in the past with a hope that the things that motivates them haven’t changed all that much. While I haven’t had children, I imagine it’s very much like how you motivate kids to go out to play or teenagers to do whatever you try to get teenagers to do. Like teenagers, what motivated them in the past might not work, because they’ve changed and thus their tastes have changed, but if you want them to get out of your proverbial basement, you need to figure it out together.
Thank you so much for taking the time to write all of that down - and helping me understand the perspective of someone who has been through this. With my daughter, she won’t admit to voices or delusions; she is sneaking in a bunch of booze when I’m not watching; and it just feels like she is falling into a pit. I just struggle so much in finding ANY sort of path for her…because if I don’t, I know that she CANT. And, she’s not ill enough to be hospitalized, but she’s not well enough to work. Its such an awful catch 22…
Sorry to hear about your daughter’s alcohol use. In my experience diagnosed people tend to abuse drugs and alcohol for two main reasons: self-medication and escape. My brother is an alcoholic diagnosed with bipolar disorder.
Alcohol is less commonly used by people with schizophrenia. It’s more commonly used when a mood component is present as with bipolar and schizoaffective disorders and unipolar depression. Depression sometimes accompanies schizophrenia possibly because symptoms of the disease can lead to dissatisfaction with life in general.
While I’m not a huge fan of splitting hairs with diagnoses, you may want to get a second opinion on her diagnosis in case there’s a depressive element that puts her at risk for suicide. There’s often little utility in getting diagnosed people to talk about their experiences with “voices” or delusions anyway. I didn’t perceive them as voices in the layman’s limited understanding of the phenomenon, so talk of them was perceived as an attempt to undermine my agency, or stigmatize me. Delusions are best not argued about as well. Better to talk about feelings than “facts”, especially if you suspect mood altering substances are involved.
My family’s approach to curb alcohol use by my brother with bipolar disorder is to limit giving him money or other gifts that can be converted to alcohol. I’m not much of a drinker, but I try not to keep alcohol in the house in case he might discover it when he’s here.
I used to try to make my son leave the house once a day. He is para sz, now finally medicated and thinking straight and working. It was a long road and involved the police and court ordered meds. I finally realized that it was not a great idea to force him to leave. Once he came home from Home Depot saying that there were people trying to catch him to take his organs. He was super scared. Another friends aunt was para sz and she was racing in her car from the folks chasing her and she ran a pedestrian down and did many years of jail. Eventually, she got out and is medicated and working and likes to do quiet things. That being said - I just wouldn’t force it.
Have you read I’m not sick, I don’t need help? NAMI has a family to family class that will help you understand SMI. In addition, they have weekly support groups for you and your daughter if she would like. Most are on zoom these days.
A few other thoughts - some people have found the psychosis has been caused by gluten. That was not the case for us - but I tried. Also, sarcosine is an amino acid - you can find that from brainvitaminz. I would put that in smoothies for my son. The thing that seemed to help him the most was Chinese Herbs - formulated for him. He would use those sometimes but wouldn’t keep it up (I told him it was for his skin condition). Finally, he is now on a shot of invega every three months - a miracle.
Anyway, it was a long road. This site has helped me immensely. I would say keep reading about the SMI, don’t give up and keep asking questions here. Something will eventually happen that may get her on medication or be willing to get help. It may not be fun or easy. I am sorry you are here, but it’s a great support/learning site.
Thank you so much for your response. My daughter has depression and some form of schizophrenia, though not fully diagnosed (mostly because she refuses ongoing treatment). She has had delusions for about 2 years, and now in the past year she hears voices. My main goal is to get her in treatment, but because she’s 24, she can refuse. So, she spends 23.5 hours a day in her room. It is absolutely heartbreaking to watch.
I have read that book you mentioned - and in many ways, she is textbook. She totally denies she has a problem. She denies the delusions and the voices (even though I hear her talking to them). And, she won’t try medication. Can you tell me more about the Chinese Herbs? How do I get them? I will try ANYTHING.
Thank you so much for taking the time to respond to me. xx
I had my son go to a Chinese Herb Doctor in my town. I told him it was for his skin condition. I told the doc that my son was sz. He spent a 1.5 hours with him and formulated the herbs. I would google that and your towns name. Here is the example of my google - we were in Boulder, CO at the time. https://www.yelp.com/search?find_loc=boulder%2C+co&cflt=tcm
They usually do acupuncture as well - my son was not interested in that. You usually have a choice of a powdered herb or leaf herbs which you cook. The ones you cook seem to work better. I hope you are able to get your daughter to see someone.
I understand what you are going through - I am sorry as I know how rough it can be.
Sando – so what’s interesting is my daughter won’t admit to me that she hears voices and has delusions. I have video’d her talking to voices in the air (so to speak), but when I ask her about it (in a non-threatening way), she denies it. I’ve tried LEAP with her to understand her but she won’t let me in. I do agree, Love wins.
DianeR - very cool idea. I will look into the Chinese Herb Doctor, too! I have NOTHING to lose
Hey @NikkiDG Forgive my directness here, but I am wondering if you understand anosognosia and the LEAP method of communication. LEAP is more of a life style on how to communicate with our family members at all times.
Our family members with anosognosia are incapable of understanding they are neurodiverse/schizophrenia. LEAP is not how you talk with them to convince them they are sick. They are not in denial and they really need us to understand their situation.
It sounds like you have spent a good deal of time trying to convince your daughter that she has a severe mental illness. LEAP communications are not about helping her to understand what you are saying, LEAP communications are about building an opportunity to learn about what may motivate your daughter to see a doctor or take meds.
There are several good free videos on youtube of Dr Amador explaining his method. Do some digging and watch some of his videos.
If you can let go of believing your daughter is denying her situation you could begin to help her immensely. As @DianeR wrote to you …
Understanding anosognosia, using LEAP methods of communication every time you speak with your daughter and getting your daughter on meds are the keys to your future.
I tried reason with my son and all it did was build a wall between us. LEAP took down the wall and helped me learn what would motivate my son to get help.
In LEAP - you try to listen to your loved one. Instead of telling your daughter she is hallucinating, try to find out what is going on and believe what she tells you because what she is hearing or seeing is very real for her.
If she says someone is after her and she is afraid of what they will do with her. You may respond with - that must be very scary. I know I would be afraid if someone was try to get me. Basically, you’re trying to get her to talk to you and develop trust.
Dr Amador’s brother, for example, said that he mother looked like a devil. Finally, after years of telling his brother he was wrong, he realized how scary this must be for his brother and he started to listen and empathize with him. That’s the LE part of LEAP.
btw - they believe that the schizophrenia (someone correct me if I’m wrong) at least in my sons case is that there is too much dopamine being produced on his brain. The meds he takes (once every three month shot) regulates the dopamine.
I wish I had understood LEAP earlier in my sons illness. He still thinks he is fine. Anasognosia - the worst part of this illness.
Hang in there!
You stated your son is now on Invega every three months. My daughter just started the 3 months in February and her next shot will be April 17 but it seems to be wearing off about a month too soon. Just wonder if you have ran into this?
I don’t live with him but the first time he was on the shot and I did live with him, I didn’t notice it wearing off, but he may have hid it well. After a year on it, it was like he wasn’t ill at all. His room was still a mess all the time.
He was on the shot for a full year and 1/4. Then he was off for 2 years after about 6 months he went off the deep end again. He just started on it again in August. This time it took longer to work than the first time. He was able to get and keep a job - fingers crossed - (not a high thinking position) after about 5 or 6 months this time around.
It may take a while for it to kick in for your daughter. I hope it does. I have heard of others saying that it seems to wear off when it’s almost time for the next shot. I think over time it won’t wear off as she nears the next shot.
Hi @hope, thank you for your response. And, I can understand why you’d be thinking I might not understand the LEAP method - but I promise you, that when I talk to her, I focus on her goals. I focus on where she wants to go “from here”. But, regardless, she will not admit that she talks to voices, she will not admit that she suffers from delusions. I know the difference between LEAP and general conversation. But, because she is soooo lost in her anasognia, she will not admit that she has ANY sort of problem. I keep trying to build the bridge using LEAP, but she won’t buy into it, because she is soooo convinced the problem is not with her. Regardless, I’m absolutely going to watch those videos and I really appreciate you telling me about them!! Thank you!
Thanks @NikkiDG - keep watching videos until you have some sort of breakthrough for yourself. It really does sound as though you are saying that you are trying to get your daughter to admit she talks to voices and has delusions. If you are thinking that LEAP will help her believe she has a problem - you aren’t understanding what I am saying.
I agree with @hope, you seem to be misunderstanding the point of LEAP, and it’s not surprising because it’s something some caregivers struggle with wrapping their heads around.
Getting your daughter to admit she talks to voices or has delusions is NOT the goal. You THINK it is because in your mind that’s what would motivate you to do the things you want her to do. But you don’t have the perspective of her SMI. Now I’ve talked to “voices” and had delusions, and nothing anyone ever said has ever convinced me I didn’t have that experience or that my experiences weren’t valid. Period!
In years and years of therapy, I NEVER spoke to my psychologists or psychiatrists about “voices” or talking to them. While I talked about delusional content, the point of therapy was NEVER to get me to admit my delusions weren’t real, it was to help me navigate around and work with them and live my life. This isn’t to say I didn’t come to some conclusions that my experiences or delusions may have been improbable, but that was many many years down the road in recovery, and had little bearing on my success. For most people with anasognosia it’s likely they’ll never reach or admit these conclusions.
What caregivers often fail to understand is it’s possible to motivate people with SMI to make pragmatic decisions that improve their mental health for other reasons. Part of your job in LEAP (aside from improving your relationship) is to help discover and facilitate these decisions.
In my case, I thought I’d lose my job if I didn’t start taking medication because I couldn’t concentrate and I thought drugs might help and they did. Later I started joining clubs and socializing because I was tired of being alone and I began to realize people weren’t going to come to me if I didn’t get out of the house. Your daughter’s motivators will probably be completely different, but continuing to push an agenda of getting her to “admit” something she doesn’t believe is unnecessary, unhelpful and unlikely to succeed.
Thank you for going over this, I find myself slipping into this line of thinking if I could just get her to see what’s wrong, everything would be better. But your right. I’m not looking at it from her perspective. If I was telling someone something that happened to me and they sat there and argued about it and told me it did not happen. I would stop talking to them period. I’m much more stubborn than my daughter. Your insights have helped me so much on many subjects thank you for being here.