Has any one had a loved one recover?

[hailey]

My daughter was raised from age 10 by her father. He was unmedicated bipolar and often verbally abused her. I had no idea what was happening in the home until she moved from WA to Texas to live with me.

It took a court order to get her in hospital and medication started. I think at times she is displaying aggression and extreme anger, and fear after medication started. I feel pulled to take her off all medication but would not so this with out her Dr’s help and support. Has anyone tried this.

Some of her behavior in medication is: Non stop talking to voices, yelling swearing, slapping herself. On all the medications she has been worse. The reason we started medication was due to her leaving home to avoid medication.

The Dr gave the police a letter that would go out to all surrounding counties of she leaves. I would welcome any comments.

[Mom2]

I’m sorry this is happening. You will need to have patience to see what is going on and hopefully she has a good doctor and therapist. That will be key in getting her better. I have not seen full recovery with our son but it has gotten better with the proper medication. It can be a slow road and trying to stabilize your loved one should be your first concern. I’m sure you’ve heard this before but it truly is a marathon. Try to remember that it is a journey. Don’t give up hope.

[Catherine]

@hailey My son is about as “recovered” as I think he may be able to be on Clozaril and Depakote. He is 32 and lives with me and I am his legal guardian too. For me, “recovery” is no voices or hallucinations and an ability to speak in coherent full sentences and do basic things for himself and with me. He is so far better than I had ever imagined back when he was in his early 20’s and hearing thousands of voices, seeing shadow people, and collecting insects in boxes and sleeping in the closet fully clothed with boots and a coat and hat in the middle of summer. To me I am ecstatic. It took about 5 years of many medications and me constantly documenting behaviors and reporting them it right back to the psychiatrist to finally get it right. I would not accept a medicine that left my son still consumed by delusions. The pattern went kind of like this: Start the new medicine either at home or in the hospital depending on the potential side affects. Titrate up to a therapeutic level. give it about a month depending on the medicine. If some improvement is seen then see if it is advised to increase the medicine dosage for more improvement OR add a complementary support medicine to add more improvements. If this does not show a dramatic improvement by another month or if the side affects are too hard to manage then try another one…and so on and so forth. It is so hard to travel this route but so worth it in the end. Some points to consider are: not all psychiatrists are invested in finding “optimum sanity” for our kids (sad to say) some are happy enough to know that they are not a harm to themselves or others but they are still deluded and detached from reality (I call these psychiatrists “minimalists”.} I think all of our kids deserve more than that. You almost have to find a doctor that treats aggressively and is passionate about achieving optimum stability. (it’s hard) Also as many patients as refuse to take their meds, you just can’t successfully treat this illness on no meds, I have not seen or heard of it ever being done. I didn’t give my son a choice. Surprisingly my son is a rare compliant patient. I am grateful for that. But like @Mom2 said, it is truly a marathon, but slow and steady wins the race. You may want to get a new doctor (maybe ask questions and see if others know of his or her reputation) and have your daughter re-evaluated and start anew if she is having so many issues right now with her current protocol. I am glad you are here for support. Take good care of yourself along the way. My best to you both.

[Molly]

Catherine and Mom2 are right on with their response and yes being a caretaker and support person is a marathon

I like how Catherine describe what recovery looks like. Recovery can be finding the right medication and helping to get rid of or quieting the voices and delusions and paranoia. I know its very tough on you but your daughter is very lucky to have you. You are doing really good advocacy work and yes it could be that the medication is making it worse. There is really no way doctors can say that certain meds work or not work. Just keep doing what you’re doing and trust your gut. I wish the very best for you, your daughter and the rest of you family. You are dealing with a lot of difficult things. I’m glad you’re here.

[hailey]

Thank you so much for your words of encouragement. I get so overwhelmed when a medication fails, and forget how lost she was before we began this journey 4 years ago. It is very comforting to hear I’m not alone. We do have a good mental Health team for her now (just got a new Dr). He is well respected and seems to respect her. Yesterday he put her on Invega Consta injections. If it helps the voices and visions she will take this once a month. A big break through for her is telling this Dr her symptems, that she talks to several voices all day and sees them at night. Thanks for sharing it is such a help.

[hailey]

Mom2
Thank you for all your encouraging insight.
I’m still trying to remmember through my notes how bad it was before we started this journey. At times my mind goes crazy thinking maybe she has a tumor, as they have never done an MRI. Then I go on to the next medication.

[hailey]

Cathrine you have my story down right. Have done it all, seen it all. She slept under a table for weeks instead of bed. Left once right after hospital release, could not find her…5 months later she came home. Told me she slept in a plastic tub in a tent…she had savings so each day she would go to Wal-Mart and buy some thing dry, it was a very cold wet winter in Texas. For over one year now we have (like you) done the medication dance. I loved the way you described the psychiatrist being either caring for optimal wellness or being a minimalist. We just started with a new Dr and the vote is out…although the nurse on our team who I like says she thinks he is very good. Today is day 2 of being on envega consta…she has already started eating more, and had a bad morning. She told the voices she has a head ache. She has a thing about pain medication so I told her it was a new calcium pill…she slept two hours. We are trying to get ready for a trip to our home in Seattle area for Christmas- pray we make it ok.

[Catherine]

@hailey I understand, thank you for sharing, prayers to you.

[hailey]

Thanks Catherine:relaxed:

[hailey]

I feel guilty it has been so long to reply to all of you. This year has been long. The closiril killed off white blood cells…most others made her hit herself. We settled on envega monthly shot. Not ideal but stable most of the time…break throughs are short. I would love to be able to pic and choose her Dr. Catherine, but I’m 73. I had her in my mid 40’s. Then divorced and retired with Medicare for insurance. I thank God she has medicaid. I love I’m Texas and we have a great mental Health community clinic here. I have learned to keep records and advocate, most days are good except a week before her next shot, we use oral envega and kolonapin.

[Mom2]

My son’s second doctor ordered an MRI and it was normal.