Family and Caregiver Schizophrenia Discussion Forum

Not sure I’m doing enough or the right things

My sister has been diagnosed with Paranoid SZ. She’s also blind. I’ve had guardianship for over a year due to untreated medical conditions and her refusal to seek treatment. She’s 65 now, has stage 4 kidney failure treating with diet changes. The SZ is treated with a monthly shot of Abilify, hand is helping. She’s still delusional but not the horrible violent delusions she use to have. She lives in an apartment and has caregivers who stay with her. I don’t argue with her or try to convince her that her delusional memories are not real. Is that wrong? Should I be trying for a higher bar on reality for her? She seems relatively content at this point. She still talks to people who aren’t there, pets invisible dogs, believes she’s done great things that she hasn’t, but for the first time in years, she’s somewhat happy or content most of the time.

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Hello Nancy,
Welcome to the forum. I hope by reading others posts it will help you with some insight.
A’s far as your question about correcting your sister’s delusions; I found with my mom it would make her really mad or upset. Also to the MI person their thoughts are very real to them. Most important to be compassionate with them and understanding of their situation.
I hope you stay in touch with us, take care AnnieNorcal

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Not at all. By definition, a delusion is a fixed belief that remains despite information to the contrary. It’s best to empathize with the underlying emotion rather than arguing about the belief.

Like many others here, I have found Dr. Amador’s LEAP method very helpful (outlined in his book, “I’m not sick and I don’t need help”) as well as demonstrated on his website.

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I’m not sure if it’s considered correct or not according to the mental health professionals on my part but I try really hard to keep this balance when I talk to my MI partner where I try not to tell him he’s sick per Dr. Xavier. But it’s hard because there’s certain validations and acknowledgment that I need from him for myself regarding some past behaviors that have caused some pretty major major issues in our life and affected others close to him in his family etc… his belief, or his delusion is usually that none of if happened I’m lying and making it all up in my head… yada yada, he’s not sick he doesn’t need any help it’s everybody else’s fault usually mine blah blah but I WILL tell him that if he wants to talk about those things he has to talk to a therapist about them but I WON’T sit there and have him yell at me and accuse me but if he would like to have a civil rational conversation I am always willing and that usually just shuts him up. Not sure if it’s because he wants ABSOLUTELY NOTHING to do with a therapist or even the mention of one or if he actually realizing what he’s saying usually makes zero sense. Word salad I’ve heard it called.
Anyways, working for 10 yrs as a hospice nurse I found myself practing something with my dementia patients that seemed to keep them calm and not make them more confused than they were. What I’d do is play along with their delusion. For instance, one woman thought I was a childhood friend and we were babysitting nonexistent children that were asleep in the next room. When she asked if I’d called my mom to see if it was ok that I stayed overnight I said ‘sure! I already called! She said it’s ok if I sleep over.’
Another thing I’d do if they had a bad reaction to something, like a meal, say a ham sandwich, and they became angry and violent screaming ‘what is this s***??? I don’t eat that crap! I’ve never eaten that before in my life’ instead of arguing or trying to correct their confusion or mistake I’d take the sandwich away, cut into triangles and bring it back and suddenly ‘this is my favorite thing to eat in the world!! How’d you know??’
Seems silly but it works on my MI partners too in a lot of instances. I play along with his delusion, so long as its not hurting others or me and it’s not something that’s important enough for purposes of validation or fact checking like when he’s talking to a doctor for example.
So… hope it helps! Goodly k finding your own balance of practice!

I think that is very good limit setting. You are not getting into a tug of war of who is right vs. wrong but you are standing firm that any argument or discussion must be conducted with civility for you to participate.

@NancyVdevee I don’t think there’s any enough or not enough or right or wrong things to do here. Having been where your sister is and seemingly recovered. And having a brother nearing her age with bipolar disorder and a father with dementia, I have a unique perspective.

Part of the function of a false and delusional memory narrative is a method of propping up self-esteem. The way I interpreted my bout of delusions of grandeur in my 20’s was when I was ‘decompensating’ in other ways in my life they gave me comfort from harsh realities when my agency and control was diminishing. As I recovered and realized these things weren’t true, I ‘spun’ the narratives as potentials and aspirations rather than realities.

Here are a few concrete examples:

For a time I believed I had special knowledge and potential to help find a cure for HIV. While this wasn’t realized, I have achieved advancements that improved quality of people’s lives in my field. So while the specifics of the narrative didn’t come true, I took from this ‘dream’ that I could do great things, and by some measures I did in small ways. If instead I overgeneralized and told myself that I couldn’t possibly cure HIV, and couldn’t do anything right, then my life would have been diminished is a big way, and the lives of others in small ways.

For a time I also believed I was a potential ‘star’ and could become a pop singer or famous author, and my therapist encouraged me to pursue and explore these things. This lead to voice and acting training and participation in online communities and in many aspects improved my performance and writing skills. What I didn’t anticipate was the healing and social aspects of these activities. I am a ‘star’ to myself and others within small communities, in that I have found self-respect and some respect from others.

Putting these two together I like to think: Science saved me, while Art healed me.

Now mine is a rare case, and part of my mission here is to adapt and share what I’ve learned for the benefit of caregivers and their wards in hopes my experience will someday be the norm rather than the exception.

Over the years I’ve watched my brother’s delusional narratives morph from delusions of grandeur to recollections of past glories, real or imagined. I’ll borrow a famous line from On the Waterfront to illustrate: He went from the future progressive “I could be a contender” to the future perfect “I could have been a contender” to the simple past “I was a contender.” And these track transitional points in his young adult, middle and senior ages.

Many of my discussions of the state of his life occurred over the phone, so I could still appear to listen intently while rolling my eyes. As with most delusional and other face-saving compensation mechanisms, he gets very repetitive. He recounts his glory days in High School and College and past conquests and loves of those eras as you might hear at a perpetual high school reunion, and he occasionally throws in a couple of false delusional narratives to make up for his lack of achievement since. Over the years I’ve understood these are for his consumption, not mine, so there’s not much harm in playing along in reporter mode as Dr. Amador suggests in the LEAP method. They exist to succor his ego, and don’t deflate mine, so as long as they don’t derail any business we have, I let him go on and play into the stories because he craves an audience. Because of the repetition it’s fairly easy and relatively painless to do, and I watch for small changes and new details to the narrative and sometimes ask questions as a barometer or diagnostic.

Dealing with my father with dementia is somewhat similar, although he’s at a stage where it’s more reinforcing the true memories that he has rather than any delusional thoughts. One thing many people don’t know is that before the term Schizophrenia was coined, the disease was called dementia praecox or early dementia, because of these and other similarities. Because of the pained misinterpretation and stigma caused by the term, it may be a coined word better left uncirculated.

Some thoughts and advice on how to proceed with your sister based on my experiences, Dr. Amador’s and the lives of two other people famously effected and affected by SZ, Alicia and John Nash:

First, realize your limitations and any potentials for successes in interactions with your sister. My recovery took about 10 years and while I was employed most of this time, I was at reduced social and earning power during that time. Factor in delays spent in my prodrome, I’d say it set me back about 10-15 years from my peers. And mine is a best case scenario where I had fairly significant insight and weekly and sometimes twice weekly talk therapy. Given your sister’s health, anosognosia and visual impairments, you need to be realistic in what you might achieve if you did more and what your motivations are and separate what’s for your benefit rather than your sister’s. I recently went through the loss of a pet who I thought had maybe a year or so left. I started work on a bucket-list of things we might do together. When the end came sooner than later, rather than being sad that I’d done virtually nothing on the list, I realized it was my list not his, and he’d gotten all he wanted with extra time and attention from me and I found some peace in that thought.

I will likely outlive my father and brother, and I have a similar choice to make as to how to spend my limited time with them. Granted they can communicate in ways my pet could not, but there are similar communication barriers regardless.

You may not be aware of why Dr. Amador designed the LEAP process and the coda to his story. I’ll add a link at the end pointing to a video of the story, but the basics are he had a brother who had SZ and he’d had trouble connecting with him and devised the LEAP method to bridge the communication gap he had with him due to anosognosia and improved his relationship with his brother after to he became medication compliant. Tragically his brother died in an accident where he saved the life of another person.

Similarly a tragic car accident ended the lives of Alicia and John Nash whom you may have heard of due to the motion picture, “A Beautiful Mind”. While the movie grossly oversimplifies and sanitizes the complexity of their lives, namely that they had divorced for many years and John Nash had a son from an affair who he had disavowed. The couple reconciled, and the disavowed son later developed SZ, but I believe has benefited from proceeds of the book and movie, and John and Alicia Nash enjoyed improved status and acceptance. If you want the unvarnished truth, read the painstakingly researched book. If you want the feel-good fantasy, watch the movie.

As usual I’ve gone on a bit longer than I might, but I have a few suggestions on how to proceed. First if you want to form a bond and better communicate with your sister, read Dr. Amador’s book on LEAP as others have suggested. Not to get her to take medication, as you have that covered, but to learn how to communicate with her to foster a better connection and perhaps improve the quality of her life and for you to possibly share a part in improving and sharing that life. Second, I would lean into and learn from her delusions. If she pets imaginary animals imagine what having a real therapy dog visit her or what a service dog might do to improve her life. If she talks to people who aren’t there, imagine what a reading service volunteer who she might actually talk to might do for her. I wish the best for you and your sister in your endeavors, and I think you just need to focus on the L part of the LEAP process and listen to what she wants out of the rest of her life beyond her physical and health needs and work to remove obstacles to realizing practical versions of her dreams (delusions).

[edit: Dr. Amador’s TEDx talk linked below. 2:10 and 17:02 is where he talks of his brother Henry]

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What a wonderful solution!! I am still smiling over your way of handling a food delusion.

Yes, absolutely, I think in some instances it is best to play along with the delusion. I mean nothing will take away the delusion, and playing along can move things ahead. Thank goodness the medication for my daughter has handled almost all delusions.

Your suggestions in the last paragraph are great! Especially the visiting therapy dog idea.

I thought the same thing @oldladyblue. What a great idea @Maggotbrane.

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Hi and welcome, sounds like you’re doing the best you can and that you really care, and that has to be enough. I am re-posting a link I posted some time back on responding to delusions. I hope it helps. https://testandcalc.com/voices/resources/Responding%20to%20disturbing%20beliefs%20-%20handout.pdf

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Thank you! I will read the book. I appreciate your ideas on the dog and the reading. I think she is happier and feels safer now. I just want her to have a life she can enjoy and to know she is loved.
I did start down the bucket list road, thinking I could take her on a trip to experience the ocean, something she’s never really done, but she believes she travelled the world. Not sure how she’d do away from home.

When unmedicated, my daughter flew alone across the country to stay with a long time family friend for awhile. The trip went fine, although she eventually had to come home after a few outbursts were too much for that family to handle.

Another time she flew alone up north to visit a friend, she had a psychotic episode, the friend called the police, and my daughter ended up on a bus home. Most of the trip was fine, but the episode scared her friend.

Your sister will probably be OK on a trip, especially with you there, but there is no way to predict if an episode will disrupt your plans or not.

Thanks all. I forget sometimes my perspective is unique, as these ideas seem intuitively obvious to me. The Jungian model is to work with delusions where possible, not against them. The aim is to tame and eventually integrate them into the psyche.

Jung and Freud started in an era before AP drugs were available, so they had little to lose. Jung even induced psychosis in himself by practicing ‘active imagination’, which is obviously a reckless practice in someone already delusional or psychotic. But I feel the medical psychopharmacological model throws away some of the brain’s unconscious natural healing process by making the goal to suppress symptoms by medicating them away. This suppression is rarely perfect anyway, so while AP drugs are powerful and useful tools, as a treatment I feel they are incomplete.

Certainly not everyone can go the Jungian or Post Jungian route, but I see little harm in working with innocuous delusions. This goes for all caregivers, not just this special circumstance. And @NancyVdevee it may surprise you, I only started reading Dr. Amador’s book recently after gifting it to myself over Christmas. I recommended the LEAP process out of what I’ve heard in the forum and videos and my intuition that it should work, knowing the inner workings of schizophrenic thinking. You may finish the book before I do!

Per traveling with your sister to the sea, gradual exposure to new circumstances is best. I view it as building up a resistance or tolerance to changes in environment and stimulus which is difficult and can be exhausting when you have active SZ. Shorter trips say to a nearby lake or river or pond or a brief plane ride to a nearby city will allow you to gauge and accommodate and adapt to her stressors. I would caution that you focus on her goals rather than your own. She’ll be better motivated to tolerate short-term stress for something she really wants to do.

You goals of a more enjoyable and loved life for her are laudable and appropriate. I’m hopeful that LEAP will be a tool to help you get there together.

All the best, MB

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“Science saved me, while Art healed me.”…This is just such a fantastic statement and thinking process!
Also agreed about the excellence of the ideas about bringing in therapy dogs and readers… these are Great!
MB, you really need your own TedTalks! Lol! You also made some very good references and sharing the link was great if anybody hasn’t seen it yet.
I personally reference John Nash myself quite often. I believe if anybody is on here, they really need to just open YouTube and search ‘A Brilliant Maddness’ , look for the story of John Nash Documentary. I advise everybody watch this. It’s fascinating to listen to John talk on his experience and recap his own thought processes at different stages throughout his life. Also, there should be a follow-up video there of an interview with his son, who also suffers horribly from the same diagnosis and disease. Excellent watch for perspective and insight for everybody involved or effected. Thanks MB as always a pleasure to have you share! Great thoughts!

The whole paragraph on practicing ‘active imagination’ and Jung and Freud sooooo very spot on! Yes, it may be an internal therapeutic process some if not many of us and our minds use to some degree , but also a very very dangerous one for somebody who already suffers a psychosis.
This is what my partner tends to do. Except, wether he is doing it consciously or not, he doesn’t realize the consequences and effect on his thinking and thought process and behavior because he doesn’t see his sickness…
This is clearly exhibited and explained beautifully in the John Nash documentary I suggested earlier in YouTube ‘A Brilliant Maddness’.

I apologize for my lack of tech-savviness! I can’t figure out how to post the link but it is:
YouTube > search>
John Nash: Biography A Beautiful Mind Documentary (Science Math Documentaries 2015)

Funny you should mention this. I have a collection of unfinished essays in TED format, and that was the thesis of the first one. Eventually I discarded the idea and have been adapting them in video essay format for a YouTube channel. Another essay was about my experiences of being a ‘unicorn’, using examples of me acting in James Thurber’s ‘The Unicorn in the Garden’ and ‘The Glass Menagerie’.

One problem I see with TED talks is they are one-offs by invitation only, so you won’t have a lasting or meaningful impact unless you promote a book or foundation that has a life after the talk. Another problem is to do a TED talk, you have to be ‘out’ and I feel there’s risk in this, both to myself and family members. I feel a YouTube channel has a better chance of making an impact and gradually building an audience.

I recently went back through another thread looking for a link to a YouTube channel that another person on the forum was doing. The person has a diagnosis as well and I was very interested to see them talk on what their take and experiences were living with their diagnosis. I wasn’t able to find the link again and wondered actually if it hadn’t been pulled from the site due to perhaps privacy concerns. Not sure if that would be the case, but yes, I for one would watch a YouTube channel. I feel it may help family and caregivers have some perspective on what our loved ones are actually going through personally coming from somebody else who has insight to their own condition.
Keep sharing!

You may be thinking of @Psychiatry_Capitalis He posts from time to time mostly promoting his channel. Follow links in his profile to get to posts where he links his channel. @GSSP, I believe has a channel, but he’s a caregiver.

There are many SZ UTube channels and I do have one and often post links to it here. What are you looking to learn?