I do remember you and your difficult struggle with your son. Sounds like you have been working hard to help him and you sound very exhausted. Clozapine is unlike any other drug and the side effects or negative effects you are seeing depends on how long he has been on it and how much he is taking.
Several other things also play a role. I can speak on this based on my own son’s experiences with it over the past 10+ years. I promise you it started off pretty rough at first but with encouragement from my son’s doctor to give it time it finally got much better but it took time and making some very specific changes for my son on his behalf.
First my son always smoked too much from day one and originally he also smoked weed and did other drugs and drank tons of coffee and pop. The doctor said no drugs with medication and so the one thing that helped me control that was me not letting him have any pocket money of his own at all ( I got guardianship of him very early on and was made his rep payee for his disability payments)
He finally quit all of his drug seeking behaviors which occurred about 1 year into the clozapine treatment when he stated that he could not hear anymore voices. That was when the self- talking/mumbling and laughing out loud at nothing stopped too. He started really seeming like he was much more able to be “reached” then.
As for coffee and pop I controlled that too and had him limited to one mug a day and one pop a day, it was hard at first but now it’s a habit. With no money of his own I controlled cigarettes too, and at first (as hard as it was for me being a non smoker) I issued him one pack a day, much better than the 3+ packs he was somehow managing to get or “bum from others” before I stepped in.
Today he smokes about a half a pack a day so things have improved very slowly and gradually. I cooked all of the food so he he ate what I made and I cooked healthy with very little junk or sweets. Smoking has to stay stable when on clozapine as you well know. Changes have to be very gradual.
The next thing I had to work on was a predictable simple daily schedule. Any kind of predictable daily schedule. I kind of let him take the lead on this to an extent because “demands and expectations =intense stress” in the beginning.
Even if the so called schedule was wake up (very late) , smoke a cigarette, watch a TV show, eat something, smoke a cigarette, go for a ride with mom (or not), come home and eat lunch, take a nap, etc etc…I mean what I am trying to say is while my son was adjusting to the clozapine his daily “activities” had to be extremely ridiculously simple and easy and extremely low stress and quiet, allowing for lots of time to sleep, stare at the TV or the wall, or listen to music or sleep or just sit. I know this is hard on the caregiver it really gives a whole new meaning to “caregiver” BUT having been through it for the first 2 or 3 years on the drug I saw a very slow and gradual improvement and positive changes started to happen in my son, this drug is slowwww but effective. He did have muscle rigidity and twitching at first and drooling problems at night but the doctor gave him 2 mg of benztropine which does help with that. He also was very tired --slept up to 16 + hours at times, gained almost 100 pounds all total BUT again, it’s been 10 years now and he sleeps 10 hours a night now and wakes up without an alarm and he has lost over 60 of the 100 pounds and he exercises 5 out of 7 days a week. Today he has no real muscle issues anymore. He still has the lesser symptoms of wanting to not seek out friends or any other companionship other than me and he likes being alone the best, but he is genuinely happy and he has hobbies and he laughs and jokes and we recently discussed who we wanted to vote for in the upcoming election and we discuss the news and he thinks about things other than himself, he is connected to the world —where he was not connected to anything but his sick and addled mind in the very early days. He was diagnosed when he was 21 and now he is 35. He is doing very well.
Its’s important to know that as a caregiver the one constant that I have maintained is shielding him from prolonged undue stress. I feel that is where his success has really been rooted, a low stress environment. I had to learn that what I saw as low stress might be very stressful for my son, like having a stranger visit for example. If a friend came to see me, he would stay in his room with the door closed and I let him and I didn’t have company often just when I really wanted or needed it. Expecting him to do chores, I did all the chores for a very long time until he was stable for quite awhile and then he just started saying, “I can do that” and I let him, now he does more than his share of all the household chores and he is good at it too. He helps with shopping and cooking and he learns new skills every year pertaining to paying bills and managing money. Eventually I gave him a PayPal (prepaid card) with a certain amount on it every month and often it’s still there at the end of the month, occasionally he craves Taco Bell or some other fast food and he will spend it. We are very peaceful and happy room mates at this point. He is doing better now when stress arises, like recently we had to move unexpectedly and in the past that would have thrown him for a loop but this time he managed well and I noticed he slept a little more but he bounced back and he was even supportive to me during the move. I still believe small positive changes are happening all these years later.
His blood tests have come back very good all along so I am fortunate there but I agree with your son’s medical team that your son has to have a “big picture” kind of treatment that includes moderation in everything, remembering that while sick your son will not be able to properly judge what is moderate. You have to create his reality in a sense and be able to constantly tweak it when you see something not working for him. Food, cigarettes, coffee, sweets, activities, you have to decide and help him accept limitations until he has experienced true stability for a good long while THEN you will see him want to take back his own care. I believe this. The one thing I had that a lot of caregivers do not have is I could stay home 24/7 with my son because I was diagnosed with some major health issues that kept me from being able to work. Had I not been home with him I do not think I would have had the same success that I had. I also was always a single mom so I never had to debate anything with a significant other which could have helped me or delayed things considerably, I will never know. I think having me around day by day was somehow a comfort for him even if he didn’t like it was or couldn’t express it. Sometimes he would ask me something that was clearly based on a delusion and if I said that’s not how I see it, he would be like “oh okay” like he was checking his own reality against mine. This was after he was really showing signs of stability. It took time for him to trust his own thoughts as well as to realize he could trust me 100%.
I share this because I strongly believe in the positive results of clozapine. It saved my son’s life, and in a way mine. I understand everybody is different and sometimes the blood tests don’t work out or the patient doesn’t comply or the caregiver can’t gain the control needed to help the patient get where they need to go BUT you sound like you are trying your very best and that counts for a lot.
I would highly recommend that if you can you find a therapist for yourself even if you can only see them once a month, or come here more often, if you can, for support, if you can’t leave your son right now. You need to keep taking good care of yourself so you can stay strong and healthy for your son and for yourself.
One day he will thank you for being there in his darkest time. I believe that, Recently my son thanked me and even apologized for all the trouble he put me through, I just told him no apologies were needed. I consider him my labor of love. Thanks for being patient as I ramble on with my stories and opinions I hope somewhere my words help. I wish you and your dear son all the best. PS: One thing I wanted to add was that I take my son to his family doctor every 6 months so he can have his liver enzymes checked which is important and often a psychiatrist will order that as well. I also found out his vitamin D level was almost non existent so he now takes a prescription dose of vitamin D3 (50,000 units capsule) once each week. I also get his A1c tested (just to be safe) and make sure his blood pressure is good, I also make sure he gets his teeth cleaned every 6 months especially since in the beginning he never took care of them and lost 3 teeth. I want him to keep the rest and today he does well to care for them. Just wanted to add that -message me anytime, I never mind being a source of support for another parent, if and when that’s possible. Take care!