No right answer


#21

Hi all, Thank you @jaxy, @Sandy1234 and @mbheart for telling me that you feel the same. Sometimes, each day, all I can take is one tiny step towards improvement or try to eliminate something that is a failure.

I learned that knocking on her door and offering food (a ready made plate and a glass of juice) is the best way to end psychotic raving. For some reason it pulls her out of “her” world and back into our shared reality (the normal world) better than anything else: a knock, “I have food for you”, door opens, she takes food, “I love you.” door closes, but episode lessens almost immediately. Wow, took me two years to realize how well that exact scenario works. Many days it is my only face-to-face contact with her. Yesterday, it got sooooo loud no amount of noise machines or TV speakers could drown it out before I did “the food routine”.

Yes, mbheart, it is like PTSD to care for someone who will never be well. @hope I had goosebumps down my entire body after reading your post. What a strong woman you are. I sure can agree with WTF. @oldbobrobert and mbheart and everyone who has guided your loved one onto medication that helps them have a life: I am jealous and sad that I have failed to do that for my daughter.

Thank you all for your continuing posts and support, knowing you are on this site and posting your own experiences is worth so much to me. I have brought up this site at every NAMI support group I have been to since the family to family class I took, as for some reason, no one else was recommending it at NAMI. Both of these forms of support ARE one of the right answers I found (to go back to the name of this thread).


#22

I am sooo comforted by your words.

Only a mother can know what we know about seeing our sons cope with brain disease.

Want to use the term " brain disease" in place of the archaic term mental illness.

It’s not contagious!!!

Blessings and courage!

Vermont mother


#23

How kind of you, thank you.

We really don’t feel amazing, we feel pretty unlucky :wink: I tell my husband we are star-crossed, it sounds much more romantic than unlucky.


#24

Yes, it is so hard coping. Only someone else in the same position truly understands. Blessings and courage to you too.


#25

Clozapine was the drug that helped my daughter the most. I can’t agree that NO medication is good. My daughter would never be able to function without medication. There has not been anything to make the paranoia better though. While the voices are still there they do quiet a little. There is no “magic” pill. Long term facilities are very expensive and there are only a few of them. Acute episodes are treated in hospitals but there just are no facilities for them to move to when discharged.


#26

You seem to abdicate for clozapine treatment. Like you said, in lower dose, you might be ok. but most psychiatrist start with high dose to treat most patients and try to lower when their patient seems to be ok. That’s the opposite of the norm. Any treating doc should start low and go high if needed, this is from what I read and asked knowledgeable psych. doctors.
Clozapine is the most strong neuroleptic. If you take it for long time, make sure how to taper it to get out of it. I would check more about it if I were you. good luck. where ever it works good for you, doesn’t mean it’s good for the next person.
wish you well.


#27

I am not advocating for any specific medication. I know there are positives and negatives about all antipsychotics. I can only describe the response I have seen for my loved one. I completely agree that what works for one person may not be the solution for someone else.

As for how clozapine is prescribed, no doctor starts it at a high dose. A person is very carefully monitored when started and the dose is increased very slowly. Blood work is required every week for the first 6 months, and every other week for then next 6 months. Blood work continues to be required every month after that time.

For someone who needs the medication, discontinuing it with a doctor’s supervision can be dangerous, and also leads to eventual decompensation.


#28

Happy cake day Vallpen!


#29

I can’t even imagine my daughter submitting to over a year’s worth of blood tests and medicine. If that much effort goes into clozapine treatment, I certainly would follow what the doctor says explicitly and hope that my loved one continued on it. Decompensation would be terrible and waste so much earlier effort for possibly little to no gain.

No one likes being medicated that I know of, whether it is for physical or mental illness. We do what we must, and there is no one right answer for everyone.


#30

Tyson this is very true. When my son was in hospital, they started my son on 15 mg of Zyprexa (which, by the way, is working wonderfully). But it reminded me of a horse tranquilizer, he slept 16 hours a day. Why did they start him so high??? What if it was them or their loved one? Would they have made the same decision?? They said 20 mg was the highest dosage they like to go. So I was very worried and alarmed.

He is now also seeing an outpatient psychiatrist who also seemed alarmed and concerned about the dosage. She tapered the dosage very slowly and he is now on 10 mg which, to me, is still high.

I cannot say enough how AGAINST I am of ALL OF THESE POISONS pouring into our loved ones bodies. The fact that my son ended up with sz, I knew there had to be something involved. I’m reading we still don’t know ALL of the ramifications of AP drugs, with Zyprexa being one of them. But I’m very grateful so far that he only needs to be on one, and that he’s willing and is complying, a lot of people are taking several different ones to manage.

I often thought of trying the drugs he has tried, including Haldol and Invega sustena monthly injections, just to see what my son went thru. He was begging and crying that he didn’t want to take them, (the side effects were pretty horrific for him, I would not wish that on my worst enemy). I would have taken them myself if it meant he didn’t have to.

Of course we all must do what we must, to help ease the symptoms and hopefully these meds help them manage their lives alittle better. I’m just concerned not only with the daily side affects but the long term usage, and what it’s really doing to them inside, over long term usage


#31

One of the reasons my son’s pdoc had NOT tried clozapine was because my son struggled with compliance. However, he has been wonderfully cooperative about the testing, and has remained very adherent. I think that can be at least partially attributed to the fact that this is one of the first meds that actually worked for him and has given him a measure of internal peace.


#32

I am very glad that the drug is working and that your son feels he is doing better.