Planning to drive up to meet her mid August, we both had lots to do in the meantime. I am really looking forward to it though.You have a great weekend too!
This is more for anyone reading this thread later if their family member is starting Clozapine.
I thought it was a one-off last week, but it’s happening again this week.
He scares me by having a 24-36 hour period where he doesn’t sleep much at all, then for the next week he’ll alternate between sleeping around the clock and somewhat normal sleep cycles.
So, I alternate between thinking he’s on too much Clozapine or too little.
The delusions are still better, his mood is OK other than when he gets irritated with me asking dumb mom questions, and his appetite isn’t terrible. He has gained some weight, but he’s not very active right now - it’s unbearably hot here right now & I’m not putting any pressure on him to do anything. He hasn’t said anything else about being dizzy and I don’t see any other side effects, so as long as he goes back to sleeping in a day or two, all’s well with the world.
Could you get him to go the the pool. Water is so therapeutic.
We have a 24 foot above ground pool in the back yard.
He says he’s going to get in it all the time, but he’s only been in it once this year. Some years, no one gets in it.
When he was a kid, him & his friends practically lived in the thing.
The water is crystal clear and warm as bath water right now since the outside temps are in the upper 90s.
If I had the money, I’d take it down & get a hot tub. One of these days.
He’d get in that no problem.
My son loves hot tubs but I wouldn’t be able to keep him out of it.
Mine would be in it all the time too if we had one, but that would be OK.
I think I’d be in it a lot too.
Back when we used to take family vacations, we’d always rent a house for privacy because my son has never enjoyed being around a lot of people. Most of the time, they’d have a hot tub, sometimes a pool too. We always used the hot tub more than anything else.
My son is on his 43rd day (6 weeks) into the Clozapine treatment and doing well.
He doesn’t seem paranoid at all, no sign that I can see of visual or auditory hallucinations, his delusions are still down from before he started Clozapine, but I have seen a gradual increase since he had about 4 hours of questioning them about 10 days ago - that seemed to be his current low point as far as the delusions go.
He’s not doing a lot, but he doesn’t seem depressed. He does talk about doing things, like saying he maybe he could get a job doing X or go back to school for Y. He still has his social anxiety, but he is going into stores more, he seems to be able to tolerate being around his father better (sometimes, I can’t tolerate that - lol), and his appetite is OK, although we’re not always making the best food choices.
Once, I saw 1 very thin line on his face where he may have been drooling in his sleep, but he hasn’t said anything about it. He’s had dry mouth from drugs in the past & he hated that. I hypersalivate from time to time naturally, so it’s not the worst thing in the world anyway.
No complaints of dizziness for awhile. He’s sleeping regular hours more often with the random day where he doesn’t sleep at all. Days where he sleeps all night and all day are getting fewer.
He’s been on the 200 mg/day dose for 4 weeks now, but I’m guessing it will go up next time he sees his doctor on July 24th.
The only concerning thing is that he still doesn’t think the meds do anything. He doesn’t like when I have to wake him up to give it to him on schedule (I don’t do it on the minute, more like within 2 hours of when he’s supposed to take it.). But, last night he told me that he only takes it because I act like I won’t get him any cigarettes if he doesn’t take them. It’s OK for him to think about that, but that means a battle will be coming if he still feels that way if he gets approved for SSI. I guess it’s time to think of a new strategy so I have it before I need it.
So, that’s my update. He’s been out of the hospital for 35 days now, and he was averaging about 45 to 50 days from discharge to a new admission over the past year, with a really bad 7 to 10 days before he went back in. I’m pretty sure he’ll make it longer than that this time - I’m hoping it’ll be a really, really long time.
Such great news @slw! If he continues to take his meds, my guess is that his hospital stays are over. Optimistic I know but, I’m basing it on my own experience. We did have lots of ups and downs for months, but never got to the point that he had to go back to the hospital for a stay. I am praying this is true for you. As far as when his SSI comes in, that is a tough one. For my son, he hated going to the hospital so much that he will do anything to keep himself out of there. If I remember right though, your son isn’t as terrified of that. Is there anything else that he feels dependent on you for besides money? Not sure how much SSI in the states is but here in Canada they get about 999.00 per month. My son has to pay me rent out of that. That way, he doesn’t have as much to spend on his “self medication”.
My son is not scared of the hospital. When he gets sick, it takes a long time for him to say he’ll go, but he’s not scared to be in there.
In fact, he said he could probably just live at the one that has good food & smoke breaks if he had to. It’s funny how he’s always glad to come home though.
I’ll try to find some other things he wants that he needs help with to keep him on the meds. He wants Invisaligns since he refused braces when he was a teenager. Now that he’s over the usual age for braces, our insurance won’t pay for it. And, he’d like to be able to drive again so he has a little more freedom - we really should have another car for that. I think I’m going to propose that if he saves some, I’ll save some, and we’ll do it together - as long as he keeps up with his meds.
I haven’t let him drive for awhile without me in the car because he was so all over the place, and recently a MI man was speeding really fast & killed a lady. He said he thought he was flying. It was sad all around & I don’t want anything like that to happen, but if he continues like he is, it’s only a matter of time before he’ll need a little more independence - and I’ll be the crazy. controlling mom if I don’t let it happen when that time comes. (I am that crazy, controlling, over-protective, helicopter mom by the way - always have been.)
I’m kind of surprised he hasn’t complained about the blood tests, but he hasn’t said a word other than joking that he’s contributing to feeding the vampires - not a delusion, a real joke. I just joked back & said if that’s the case, maybe they should pay you. He said maybe $10 since it was just a little bit of blood. He does get something afterwards - a coffee (he’s loving the new Cold Brews), or takeout, or we go by a clothing place he likes to pick something out.
That is excellent news! It will take longer for his brain to catch up to the idea that the meds have worked. FYI the worry that I would not give my son his beloved cigarettes kept him compliant for a very long time before it became his own idea to stay compliant…not the worst maneuver by far. I am very happy for both you and your son.
This is sounding really the most positive I’ve heard from you. Really pleased but I know you don’t like tempting fate , neither do 1.
I’m very cautiously optimistic.
I hate to get all hopeful because it makes the next crash that much more depressing.
But, then again, my comfort zone has never been solidly in the happiness zone.
I took one or two semesters of philosophy in college. I can’t remember who said it, just that it was in ancient philosophy, but the jist of it was that it’s better to keep yourself in the middle range emotionally, where you’re never ecstatically happy or terribly depressed. That’s kind of where I feel safe.
Yep I get this totally, infact all my life (not with regards to my son) but for as long as I can remember I have always prepared for the worst (slight anxiety) then somehow if and when it happens I’m not as bad as I thought I could be.
My husband for example is laid back and doesn’t worry BUT when things unpredictable happen he seems to panic more and shout for me to sort it.
I know - I feel anxious right now for no particular reason, or for a million reasons, it’s hard to tell.
My son has been on the invega sustenna shot since 2013. Once a month. Does nothing for the negative symptoms. Now he’s trying Paxil Finally Something for anxiety! I’m wondering how long someone can stay on the same AP? Is there a lifespan or whatever for it? I’m sure the answers are all over the place! But anyway… I think about that. I could google and I have.
My son did very well on Zyprexa from right before he turned 18 to somewhere around 26.
So, I think that’s a pretty good run.
I let him manage itself because he was very good about taking more if symptoms came up & telling the doctor if he was reducing it if he was feeling better. At one point, the doctor tried to taper him off of it & he was quick to say when the tapering brought back symptoms & he wanted to go back up a little.
Those were the days when he had insight, and that makes all the difference. And, maybe if I had managed it more myself, the Zyprexa would still work. It’s impossible to know.
So he had insight for sure! What made him lose his insight? Anasognosia. I mean I thought one either had it or didn’t. Or maybe knew something but thought they could handle it without meds. Was it psychosis or what that made him lose insight? If you know. I’m really not sure my son believes his diagnosis. He’s med compliant because I think he thinks he’s still under court order.
I think it was a combination of things.
- His illness was progressing.
- He was getting into his later 20’s, still living at home, and not doing anything with his life - and desperately lonely. So, he created a fantasy world that took away all those worries.
- He either stopped taking his meds like he should have or they stopped working - or a combination of the 2. Anytime you stop taking them, you have a chance of them not working again the next time.
And, maybe he’ll get his insight back. He did have one afternoon not too long enough where I said something that had him questioning everything - and he did give up one delusion. But, he still thinks he’s just doing all this stuff to humor me and get on disability. He has a million reasons why he goes into the hospital. I just leave it be. The meds will either work well enough that his mind will clear completely, or they won’t.
Either way, the Clozapine has made him way better than he was and has taken the constant stress out of our lives for the time being.
I accidentally took my son’s 100 mg Clozapine tablet this morning.
Just being stupid - I had a drink in one hand, the pill in the other & took it out of habit.
I couldn’t throw it up so I panic’d & went to the local urgent care place. They didn’t even know what Clozapine was at first, then told me they couldn’t really help me - to go to the ER to be monitored.
Well, I wasn’t doing that because I don’t want to be there all day, so I called the pharmacist.
He said I’d probably be OK, but to expect to be sleepy, dizzy, maybe throw up - and to not drive until it all wears off.
It’s been a little over an hour & I might feel something slight but not much.
Wish me luck - and maybe I will get lucky & catch up on some sleep today. I’ll let you guys know how it was when it’s over.
Oh dear! Well, the good news is that you will have some idea of how your son feels on the meds, that the rest of us don’t have. Hope it wears off quickly for you and you do get that much needed rest! Take care,