My son was diagnosed with schizoaffective disorder when he was in college. He was hospitalized for 5 weeks and left the hospital taking clozapine after trying nearly every other drug available. He finished college, moved to Florida where his father lives, and held a full time accounting job for nearly 11 years. Now several months ago he stopped taking his medication.
He was hospitalized again for 2 weeks, and he came out of the hospital on Invega shot and a very low dose of closapine since he is against taking the closapine now. He is struggling and nowhere near as stabilized as he was last time he came home from the hospital. He is very angry with his father for āputting him in the hospital againā and me also to a lesser extent for also thinking it was a good idea. He has decided to move away from his father, so he quit his job, and got an apartment near me. He has to make an appointment for medication regulation, which he hasnāt done yet and I doubt he will because I think he may stop all medication again when he gets up here as he thinks he doesnāt need it.
He moves up here next month, and my anxiety is through the roof. He had been stable for so long that I am totally in shock that this is all happening and that I can no longer reason with him. I have read about the LEAP method, but have had little success with it so far. I am sure that it takes practice. I am having a very difficult time with him moving up here because although I love him, I am a bit scared of him in his current state of semi stabilization.
I get you ,the most frustrating thing for me is the not taking medication, my son is now 39 lives with me ,was diagnosed with psychosis/bipolar when he was 19.There is no solution to our situation but there is hope ,take 1 day at a time and just do your best for your loved one.No one can replace the love of a mother.My son believes thereās nothing wrong with him,itās a every day battle ,heās been drinking to self medicate for the last 20 years. Just be there for him and do your best .And dnt forget you must take care of yourself so you can take care of him,stay strong ,sending you hugs and lots of love on your journey, never give up
The drinking alcohol is not good. I had a talk with my son after his dwi and explained to him he HAD to stop 100%. He did and that was good but he still got in trouble after about 4 years even off alcohol. See if there is any social workers you can call and get any help or treatment for him. Iāve posted about the keto diet. It didnāt work for my son but maybe if we had done it better it might have. There is info at metabolicmind.org. In hindsight I noticed that therepists and Drās rarely are firm with these people and tell them they HAVE to do specific things (like no alcohol, no Marijuana etc, take clozapine). To be that voice he has to trust you so that for me meant spending a lot of time with him. It can get dangerous especially physically for a lady trying to help a male so you have to call the police if he is going to hurt himself or others(you), to put him in Hospital. The advice to take care of yourself is good. Working with them can be exhausting and at our age it takes alot to be fit. If he gets violent get out and away fast, preferably before things escalate. Since he spent so much time with dad I would reach out to him and get as much help from dad as possible. Keep him insured (health insurance if possible).
He is working on getting COBRA coverage now. However, he is seeing the financial ramifications of quitting his job now. He called me last night to complain about his financial situation. My boundaries are that he cannot live with me and I do not plan to support him financially. I do not mean to sound heartless, but I planned my retirement, and I cannot take this on. I will mention the keto diet to him as he is very into healthy choices. He doesnāt drink and works out daily. Doctors definitely are not firm about medications. His dad plans on Facetiming daily to watch him take his medications which he is doing now and that seems to work. (fingerscrossed) In addition, I am going back on my anxiety medication that I have been off of for years. I love my child, but there must be ways to help him financially that do not involve me supporting him (other than emotionally, of course). Any suggestions?
Well as in my other posts I am a person who wants to enthusiastically get my son on the keto diet. Specifically I want him to eat less than 20gms of carbohydrate a day and increase his animal fat intake until we get a sustained ketone blood level over 2.0 and a blood glucose level around 80. When I had him out of jail the ketones were between .5 and 1.0 and glucose around 95 , which is great but he didnāt get better, so I want to try harder. Now heās in jail for breaking the neighbors window and found incompetent so Iāve lost him for now. The antipsychotics make them want to eat too much so even though I got him to voluntarily comply with what went into his mouth he continued to cook too much meat and eat to much (the liver turns protien into glucose), so itās a catch 22 where they need some meds to stabilize and keep them out of jail but the medicine gives them a voracious appetite. We bought a KETO MOJO blood test device. This costs about $100 with a 60 day supply of test strips for both glucose and ketones. I try to watch every new āMetabolic Mindā youtube posted. I am now reading Dr Edes book āCHANGE YOUR DIET, CHANGE YOU MINDā, and I read Dr Chris Palmers book āBRAIN ENERGYā. I am not a Doctor so I cannot give medical advice. I am just sharing what I think and what Iāve done. I think if the medical system would treat Schizophrenia more like an endogenous brain trauma and less like a mood disorder many sufferers would find a way to stabilize their lives. Our society throws these people away like a paper cup. Very few providers seem to be willing to try this additive therapy, they seem to want to write a script and get paid. I know most have good intentions but like I said before THEY ARE NOT FIRM AND LIMIT THIER INOLVEMENT TO A SMALL AMOUNT. When my son was in the behavioral hospital they feed them all kinds of carbs and expect group therapy and meds to fulfill thier obligation to try to cure, it doesnāt seem to work, but they donāt seem willing to try much else. I find it frustrating an pathetic for professionals to act this way. You might have better luck than me at McClane (spelling?) Hospital near Boston or Sanford University in California where they are researching keto for mental. Dr westman at Duke university is at an obesity clinic that uses keto. I am doing the diet myself and lost about 30 lbs. Maybe I have a tin foil hat but I think it is science and has potential.
Also it is great that Dad is staying involved, my sons mother is deceased but I have his sister to help some. I suggest you need as many allies as possible to be teamworking for him. So by all means keep dad involved and work to keep him involved if you can get along with the ex for the sake of your son. To be specific talk to dad regularly. This is a very difficult problem, it is serious and takes peoples lives. Some other things I was trying was the use of MCT oil doses and āShiftā exogenous ketone drinks. I limited the āShiftā drinks to 3 a day because the magnesium content will reach my reading for the max per day.
I understand the anxious feeling very well. Itās been since 2010, since my sonās first psychosis/schizophrenia diagnosis. Itās been off and on since then, when he is medicated, itās a relief for him as well as family. He was functional to a point but had his limitations with jobs, education, he took and pass CDL training, however hasnāt been able to work in this field due to his condition and no longer taking medication. His last hospitalization was in 2024, he was fasting on only juices, which he would go days/weeks without eating, he was only weighing about 98lbs, when he was āEIPā to the hospital. My area has a behavioral therapy program with Sheppard Pratt, they have a āACTā, that is mobile and see him weekly at home. He had a rental from 2012-2024, but periodically would stay with me when he didnāt feel safe. After, his hospitalization, he lost his rental and has been living with me since, many days its very difficult as his personal hygiene is not good, but he does try herbal remedies, constantly searching for natural cleansing, calming teas, he is vegan, only eats plant based diet, he juices organic fruits and vegetables. He maintains a good weight but thinks he should lose more. The natural methods doesnāt do much for his delusions and paranoia. I say all this cause it is a lot of stress some days, however he calls the '988 crisis line just to talk to the counselors when heās triggered, heās not happy here with me so he says but canāt afford to move on. This number is also a resource that you and your son can use, whether itās a crisis moment or help with finding counseling and support in your area. Iām going to pray and hope your son can get back to the success that kept him stable and productive healthy. Just keep taking care of yourself as well and have a plan when needed. I also was scared of my son when he was triggered in the beginning because of his anger, Iāve read the āLEAPā method, have learned much concerning de-escalating the situation, sometimes by remaining calm and listening, not necessarily agreeing but acknowledging where heās at and how heās feeling. Sometimes I just walk away to disrupt his thoughts and behavior which gets him to off negative thoughts.
He can get on disability. You can do it for him. It takes awhile. My son got $1600 plus he can get health insurance. Start the application now. It take about 9 months to a year.
Something similar occurred with our son after several years in āmeaningful recoveryā on Clozapine. I had first used LEAP when son was inpatient (prior to Clozapine), somewhat catatonic and refusing medication, but deteriorated to the extent that they gave him ECT (having had my prior approval, as legal guardian and a long history of hospitalizations, and living out of his car in another state and not talking to any family or friends). He balked at the second treatment, but the nurse tech convinced him he needed it and from that point on he accepted ECT while still inpatient. (There were a couple of incidents we found out that he responded to pretty female nurses when not responding to anyone else!) While visiting him in hospital on a day on which he had received ECT a few hours earlier and looking very forlorn and certainly exhibiting the ānegativeā symptoms of SMIā¦not talking at all, I used LEAP for the first time, telling him I wanted to know how things were goingā¦that I cared about what he was thinking and feeling. He lifted his chin up off his chest, looked me square in the eyes (extremely unusual at that time), and said āReally?ā Thatās when I knew that LEAP works.
Soā¦itās a long story (we all could write a book) of how he eventually became med-compliant. It didnāt happen overnight. I never dreamed he would take a daily oral medication, but he took Clozapine for @ 6 years until a time when he gradually tapered off, without telling us at first. When he did tell us, I knew we could not MAKE him take any med. But over the next several weeks, his behaviors started becoming unusual and stupid and odd things were happening like his vehicle stopped on the freeway and we had it towed, only to find out it was out of gas. He lost his car keys and his work t-shirt in the woods. And there were more bizarre things like getting in an altercation with my husband over a book he didnāt want us to have in our house. He was making odd noises and gagging in his room. Fortunately nothing terribly serious. But I eventually told my husband āwe canāt do this anymoreā. I wrote down everything that had occurred, planned a ātouch baseā meeting with the three of us (we do those every now and then) in a comfortable setting that was convenient for all of us, and very calmly and respectfully started going over the 5 and 1/2 page document I had prepared with all the things that had been gone wrong. āRemember when, on this date,ā¦such and such happenedā, and āI know you didnāt mean to cause trouble. but remember that thisā¦occurred, and we had to come pick you upā, etc. etc. It was a āface the reality, there is no good outcomeā conversation. He listened. About 2/3 of the way through that document, he stopped me and said āItās OK Mom. Iām going to go back on my med.ā And he did. And he has. For 2.5 years since then. He works part time, does music ministry, plays soccer, engages fairly well with our family, and has a few friends.
I know each person is different, but I want to give you hope. ASK your son what HE wants, how HE feels. DO NOT tell him what to do! No one likes to be told what to do. You have to have his trust and you go on from there. (Anyone reading this who has read the book which I highly recommendā¦ āI Am Not Sick; I Donāt Need Helpā, you know what else goes along with this communication tool/process.) That is not to say that you canāt have boundaries, because you can if you can keep them. But make them flexible enough that you can change if warranted. It takes perseverance and sometimes the risk of further deterioration. Donāt give up!
Dr. Deanna Kelly, University of Maryland, is doing research on keto diet and SMI. (She is especially know for extensive research on Clozapine.) There are other keto studies going on elsewhere, as well. Professionals I know say that, while the results are yet fully known, a keto diet is showing āpromiseā. I donāt think it can cause any harm if you use it now, butā¦stay tuned to what is happening in the medical world.
If you can get him back on Clozapine, that would be ideal and allow his brain to heal. It takes time, and SLOW titration is best. (See Meaningful Recovery from Schizophrenia & Serious Mental Illness with Clozapine by Dr. Robert Laitman for details). Dr. Laitman is now also the Clinical Director for DoroMind, which is a company that can help a family manage care for their loved one. We use a programmable HERO medication dispenser that comes with an app which reminds our LO when to take meds and lets us know when our LO is dispensing the meds. It gives LO a sense of independence and we know LO well enough and are watching close enough to be assured that the med(s) is being taken. https://herohealth.com/
