So glad to hear that your son is doing well @slw ! Been a long road but sounds like he is on a much better path now, and you are more at peace. Wishing you and your family continued improvements.
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Someone had told me about a clubhouse, and I decided to start bringing it up with my son, but now I find out that it only for people who live is a particular county, where my son doesn’t live. So even if he wanted to go, he couldn’t. Sigh.
It really is the small things, isn’t it? My son is hospitalized long term but the days he has gotten a haircut or managed to spend time with the staff in the day room (not his favorite place because of blaring TV) seem like milestones to me. Hang in there.
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@Vallpen
Yes - he has to be a resident of the county, which isn’t a problem, but could be if we happened to move. He also has to be receiving treatment from the county. So, if I took him back into private practice, he’d have to leave. I think he also has to have a case manager, which he has.
They had to have a spot, then he had to go in for intake, then it took a few more weeks for them to fit him in for orientation. Like all government things, it was hurry up & wait with a lot of red tape. But, now that he’s in, he really likes it. I think from the time he said he’d go in for a tour until his first actual day there, it might have taken about 3 months.
Someone started something similar here that’s a drop-in program 3 afternoons a week that anyone can go to. That’s kind of nice. He tried it a few times here and there, but never stuck with it because he never got to the point he felt like he belonged. At least with all the government BS surrounding the clubhouse, they had a staff member walk him through everything and make sure he was settled in and felt comfortable there.
I’m glad he likes it. But, the whole process is kind of frustrating for me - so many rules around everything.
In our more rural counties, they have something similar, but several counties share resources, so it’s kind of far away for a lot of people. We’re kind of lucky. This places is about 10 minutes out the way for me as I drive to work. So, I drop him off at 9, go into the office, then pick him up at 2 and go home to finish my workday. He could stay later, but the 5 hours seems to be a perfect amount of time for him.
I hope there will be more and more clubhouses available around the country. This seems like a great program for at least quite a few people with SMI.
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I think so. I like that they’re so flexible and laid back once he got into the program.
He said he’d come twice a week. He has to be there by 9 am to sign in, but they don’t really care when he leaves or what days he goes - so that’s good for him.
If he wanted to, he could sign himself out and walk down to one of the stores. He can also go out to smoke when he wants or just pace the grounds if inside is too much for him. I see a lot of people doing that.
They just ask that you sign in and out. And, if you’re going to leave that you be back at the end of lunch so they can make sure everyone’s safely accounted for.
Then, they have a couple morning groups and a couple afternoon groups. They’re encouraged to do them, but it’s not forced. They also have a little library, a computer room and a couple other nooks and crannies where you could be kind of out of the way if you need that. They even have one room that’s for maintenance or something, but his case worker said a lot of the older members hang out in there and kind of alternate between watching TV and napping in the afternoons.
But, everyone is so friendly and accepting. He’s even been playing scrabble with an older lady on a semi-regular basis. It’s amazing that he’s interacting with anyone like that - and that he’s playing scrabble of all things - and seeming to enjoy it.
Sorry for going on & on, but if any of your family members have a chance to participate in a program like this, I’d recommend it. He’s got terrible social anxiety and regular anxiety, and has never been all that outgoing with other people. If he likes it, I think there’s a lot of hope for others too.
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This is very encouraging and offers hope. How are you at this point?
My son has been been on Clozapine for over a year (about 18 months) and I see subtle improvements continue. His Dr. once told me it’s slow and steady and works over a long period of time… will continue to see improvements over time. He’s 24 and on 500 mg. He gained a good bit of weight for awhile but he has recently started working and has lost almost all of it. He willingly takes it on his own. He lives in an apartment, drives, works almost 40 hours a week and is responsible for taking his meds. He has a case manager that checks on him several times a week. We have come a VERY long way thanks to Clozapine and good treatment programs.
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I’m thrilled to hear this, @rosie94! Our son in another town is now asking for help with transportation ( no job yet, no car) to go across town to play soccer with some other guys. He walked 5 miles at least once to get there already! I expect we’ll work out something to help him with this or he may be able to call a friend who has a car and pay him to transport. He continues to volunteer (sing and play guitar) twice weekly at a nearby adult day care center. I have realized the need to be patient but continue to be hopeful for more improvement, his increased awareness of reality of this illness and the need to stay on Clozapine, and a job (he has made some effort to begin application process). He sounded so normal on the phone today!
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My grandson did the same on Clozapine. He has been working fulltime for 4 years now. He has lost most of the weight and he has decreased from 500mg to 350mg been the best med for him
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So glad for the improvements your loved ones have been making. My son is currently on 275mg of clozapine. 2 Weeks back Dr cut down his depakote from 1000mg to 500mg and he has gotten a setback. Dr had already lowered his invega from 247mg to 156mg for which I did not notice much of an effect but depakote reduction is very visible in him. I talked to the doctor about it and she wants to wait another week. We will see!!
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I’m going to contact my son’s pdoc prior to his next 3-month check-in. My son is at 300 mg, which he takes in a single dose.
Clozapine has been the best antipsychotic for him, but I feel like he is right on the edge of effectiveness. I can see the difference if he misses a day - which happens rarely, thank goodness; I don’t think he ever intentionally skips doses. My son still has pretty strong delusions and paranoia. He cannot work, though he lives independently with my regular support. He probably could work in some capacity, but feels the stigma of working a simple job such as sacking or janitorial work, since he started college and had ambitions for so much more.
I would love to see him make more improvement, and be able to make more progress socially. I have to wonder if an increase in dose would help with that. It would have to be presented carefully to my son to not get him angry, as he doesn’t fully accept his diagnosis.
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I’m as good as I get. My life always seems to be jumping from one crisis to another - it’s just nice it’s something beside my son.
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@Vallpen - I felt the same when they increased my son’s dosage from 200 to 300 mg. He was having some troublesome breakthrough delusions and the increase was needed, but I was afraid he’d get mad about it or question things because, even though he will acknowledge his illness (he prefers to say bipolar or schizoaffective than schizophrenic) the delusions are 100% real to him.
It went surprisingly smooth. I let the doctor suggest it, then just kind of set back and let it happen. It’s been good, and it’s still such a low dosage.
The new delusion he was having might have started as a dream. But, he’s convince he can sometimes tell the future. He saw a huge man with an axe standing in his doorway and would bring up the “ax man” all the time. He told his case manager about it and she was really concerned - more concerned that I was in fact. I took the approach that if I didn’t act overly concerned and just kept telling him I was sure it was a dream, he’d stop being anxious about it and let it go. Unfortunately, it didn’t start to fade until he got the extra dosage. He hasn’t forgot about it, but it’s not as urgent now.
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We know that Clozapine tends to continue to show improvement over time. Or since your son is on a fairly low dose, as you say, perhaps there will be a good time to introduce the idea of going up another notch. Our son is on 100 mg in a.m. and 300 m.g. at night. The a.m. dose is not problematic for him…he gets up (he has to be ready when his transportation leaves) to go to a local gym 4 days a week. You (or doctor) could suggest that an added dose in the morning could help him get through the day a bit better. Perhaps there is something specific you can think of that an a.m. dose could help him with that is something meaningful to HIM. Maybe it could help him win at scrabble when he goes to the clubhouse!
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My daughter has been on clozapine for seven months now .She has not had any relaspes during that time it is the first spring that she has not been in the hospital for years.Does any one know why this meds work and the others hadn’t.I heard once don’t know if this is true or not but some drugs block dopemine and clozapine balances anyone hear this before don’t know if this is true.I would love to know the answer to this one
They can increase it to see if it is effective. You can always decrease slowly later. They do or should do a blood test to check if they amount he is taking is at therapeutic level
Yes, I think I will ask that be done next blood draw. It just has to be approached carefully to not stir up resistance on his part!.
You ask a good question. I hesitate to post a link because this is likely not a short answer, but there is a lot of information that seems reliable if you Google it. Also, a good site for medical research articles is PubMed. Glad your daughter has had no relapses!
My son lives in a licensed board and care and is under conservatorship. He had been recovering slow and steady. Dr lowered his shot to 156 mg. He stabilized on that. But then he complained to the dr about too much sleep and dr lowered his depakote to 500mg from 1000mg. I was not happy with that because I know from his history that depakote is one med that has helped him tremendously every time. While I was still trying to observe how it affects him, there was a 1 week gap in his clozapine which the residential care people did not tell anybody and kept waiting for the meds. When my son told me after about a week that he has not been getting his correct meds, I talked to the case worker and meds were made available to him and they again started giving him full dosage without any tapering. Is it safe to do that. Then the even worse thing is my son has moved backwards on his recovery. He has been sleeping too much and is getting irritated and is also getting some paranoia back.