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not sure where to put this: how to avoid being medicated if you've been deemed incompetent due to dementia, stroke etc

Happy2Heal

By Happy2Heal
in Events, actions, controversies

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Happy2Heal Contributor

Happy2Heal

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I'm getting up in age and I am terrified of ending up in a situation where I'd be in a nursing home or hospital, unable to speak for myself and being forced to take any kind of psych drug for any reason

 

there's a new commercial on TV about giving elderly dementia patients Rexulti!!

 I know from years ago when I worked in a nursing home that psych drugs are often given to patients for all sorts of reasons... and this is still done, I have friends whose parents were given some of these terrible drugs, mixed in their applesauce. 

 

Is there ANY way to avoid this happening? I have NO family willing to speak for me (they all believe that psych drugs are necessary and just wonderful, wonderful *groan*) There is no one who agrees with my wishes so I have no faith that even if I put it in a legal document that they would honor it.

 

I have tried to think of a plan to keep this from happening to me, but I don't know how to go about it.

 

 

 

 

1

PLEASE DO NOT SEND ME PRIVATE MESSAGES, thank you. 

  • pysch med history: 1974 @ age 18 to Oct 2017 (approx 43 yrs total) 
  •  Drug list: stelazine, haldol, elavil, lithium, zoloft, celexa, lexapro(doses as high as 40mgs), klonopin, ambien, seroquel(high doses), depakote, zyprexa, lamictal- plus brief trials of dozens of other psych meds over the years
  • started lexapro 2002, dose varied from 20mgs to 40mgs. First attempt to get off it was 2007- WD symptoms were mistaken for "relapse". 
  •  2013 too fast taper down to 5mg but WD forced me back to 20mgs
  •  June of 2105, tapered again too rapidly to 2.5mgs by Dec 2015. Found SA, held at 2.5 mgs til May 2016 when I foolishly "jumped off". felt ok until  Sept, then acute WD hit!!  reinstated at 0.3mgs in Oct. 2106
  • Tapered off to zero by  Oct. 2017 Doing very well. 
  • Nov. 2018 feel 95% healed, age 63 
  • Jan. 2020 feel 100% healed, peaceful and content
  • PRESENT DAYS:  Loving life! ❤️ with all it's ups and downs ;) 
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RachelSusan Contributor

RachelSusan

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@Happy2Heal This is a great post.  What you stated has been on my mind as well. I have not figured it out either.

 

Also there is the flip side of that coin which I witnessed myself with my mother.  She had dementia and yet she still had certain medications she needed to take.  Her very expensive nursing home which charged a daily fee for handing out medication if you were over some magic number of pills per day, was very lax with her medication, and from what I could see often not on time, nor did they keep me notified of any problems with the administration of certain mediations.  She had one medication labeled "as needed."  They never gave it to her, ever. Not once.  Even though she clearly needed it.  I didn't find out until months later when I questioned them and they told me they didn't do "as needed" because it would be a judgement call on their part.  I asked 1. why they didn't tell me when they accepted the medication, and 2.  isn't that why I pay as much as I do, to have a registered nurse on staff to make that decision? Only then they did admit that there were not nurses on staff at all times and it was non medical staff giving out the medications. Once I figured out what was going on, the whole set-up scared the crap out of me. So now I live with the fear of these places.

 

I fear that if I am in the middle of a taper and end up some place like that I will be in big trouble. So I don't know what the answer is. If anyone has suggestions please let us know.

 

Like you said, you don't have anyone to advocate for you. Luckily for my mother she had me.  She made it clear to me what it was she wanted and didn't want prior to the dementia. I did my very best to make sure her wishes were carried out. One of those wishes was that she wanted as little medication as possible but she also empowered me to make different choices when absolutely needed, knowing that I would do my best to keep as close as possible to her request. So not only do we need advocates but we need advocates who are strong and can think, make decisions, and push back when it is needed. I was a fighter for my mother. I have others that want to help me but I need to figure out who can think clearly and fight when necessary.  It's a hard job to do and it's a hard job to fill.

Edited by RachelSusan
typo
2

 

I am not a health professional in any way.  I do not give medical advice.   Discuss any decisions about your medical care with a professional medical practitioner.

 

NEW INFORMATION FOR GABAPENTIN TAPER

April 29, 2022 900 mg to 800 mg (11%), May 29, 2022 800 to 700 mg (12.5%), June 20, 2022 700 to 650mg (8%), July 20, 2022 650 to 575 (12%), August 20,  575 to 500 (13%),  Sept 20, 2020 500 to 475mg (5%) Nov 7, 2022 475 to 425 (11%), Nov 21, 2022 500mg

Medications: Gabapentin, Prednisone 1.5mg a day, Cortisol Inhaler daily. 

HISTORY FOR ZOLOFT TAPER

Feb. 2016 to June 2016  - Was on 150mg Zoloft.  Put on Gabapentin at 900mg a day in 2016 due to antidepressant withdrawal. 

Quit Zoloft (Sertraline) June  2016,  reinstated 50mg of Zoloft July 2016.  From July 2016  to October 2016 went from 50 mg down 2.3 mg. I up-dosed in November 2016 to 12.5 mg. Held there until January 2017 when I started a much slower taper.

STARTING SENSIBLE  ZOLOFT TAPERING USING GUIDELINES FROM THIS SITE

Dec. 10 2016  - switched to Liquid Zoloft (Sertraline) @ 12.5 mg.   Jan. 4, 2020 1.875 mg (6.3%). Jan. 25, 2020 1.75 mg.  Feb. 29, 2020 1.625mg (7.10%).  Apr. 4, 2020 1.5 mg.  May 9, 2020 1.375 mg.  June 6, 2020 1.25 mg. (9.10%).  July 4, 2020 1.125 mg. (10%).  August 15, 2020 1.0 mg.  Oct 24, 2020 .875 mg.  Nov. 28, 2020 .75mg.  Jan 16, 2021 .685mg (8.7%).  Feb 13, 2021 .62mg. March 12, 2021 .56mg.  May 1, 2021 .375mg.  May 29, 2021 .25mg. June 26, 2021 .0125mg. July 25, 2021 .065mg. August 22, 2021 .048mg.  October 2, 2021 .043mg.  October 10, 2021 .038mg.  October 23, 2021 .035mg.  October 30, 2021 .032mg.  Nov. 13, 2021 .030 mg.  Dec 4, 2021 .0285 mg.  Dec 11, 2021 .0265 mg. Dec 18, 2021 .0246 mg. Dec 25, 2021 .023mg. Jan 1, 2022. 0 mg. OFF COMPLETELY

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UnfoldingSky Contributor

UnfoldingSky

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You could try contacting Mindfreedom.  They have a Shield Program for people who end up in psych wards, and group homes (I think). If you don't want to be in one or forcibly drugged you can spell out what you would not want. Then if something happens either you or someone working on your behalf can contact Mindfreedom.  They then may activate their activist network apparently, who can contact the people who are holding you/drugging you against your will and try to get them to stop.  

 

I'm not sure if this is ever used for nursing homes but, maybe if you talk to them maybe you can get to know someone in the group who can keep an eye on you.  Also make sure to ask if they always will contact their network, as I'm not sure if they do for every case or not.  Probably more likely if you do activism work for them. Obviously this is a last resort solution too, as it may not work that well given if you anger the staff in there, you might get treated worse.  I would hope staff would not retaliate against someone in a nursing home but...nothing surprises me these days. 

 

We could use a network for this sort of worry I think too.  I know there was a seniors group where I am, to help bail people who were being held against their will when family wanted them at home. I don't know if they still exist or not.   I'd have a look in your area if you have not already, there may be a group that started up in response to stuff like this.  Maybe you could even make one if you have the time.  

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

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RachelSusan Contributor

RachelSusan

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@UnfoldingSky What a great suggestion. Thank you for posting. @Happy2Heal I found this on wikipedia: https://en.wikipedia.org/wiki/MindFreedom_International.  And here is the actual group: https://mindfreedom.org/.  This is thanks to UnfoldingSky. At first glance I didn't see anything about nursing home protection but it is still a start. Perhaps you might want to look around their site a bit more and see if I missed anything that could be of help to you?

Edited by RachelSusan
typo
1

 

I am not a health professional in any way.  I do not give medical advice.   Discuss any decisions about your medical care with a professional medical practitioner.

 

NEW INFORMATION FOR GABAPENTIN TAPER

April 29, 2022 900 mg to 800 mg (11%), May 29, 2022 800 to 700 mg (12.5%), June 20, 2022 700 to 650mg (8%), July 20, 2022 650 to 575 (12%), August 20,  575 to 500 (13%),  Sept 20, 2020 500 to 475mg (5%) Nov 7, 2022 475 to 425 (11%), Nov 21, 2022 500mg

Medications: Gabapentin, Prednisone 1.5mg a day, Cortisol Inhaler daily. 

HISTORY FOR ZOLOFT TAPER

Feb. 2016 to June 2016  - Was on 150mg Zoloft.  Put on Gabapentin at 900mg a day in 2016 due to antidepressant withdrawal. 

Quit Zoloft (Sertraline) June  2016,  reinstated 50mg of Zoloft July 2016.  From July 2016  to October 2016 went from 50 mg down 2.3 mg. I up-dosed in November 2016 to 12.5 mg. Held there until January 2017 when I started a much slower taper.

STARTING SENSIBLE  ZOLOFT TAPERING USING GUIDELINES FROM THIS SITE

Dec. 10 2016  - switched to Liquid Zoloft (Sertraline) @ 12.5 mg.   Jan. 4, 2020 1.875 mg (6.3%). Jan. 25, 2020 1.75 mg.  Feb. 29, 2020 1.625mg (7.10%).  Apr. 4, 2020 1.5 mg.  May 9, 2020 1.375 mg.  June 6, 2020 1.25 mg. (9.10%).  July 4, 2020 1.125 mg. (10%).  August 15, 2020 1.0 mg.  Oct 24, 2020 .875 mg.  Nov. 28, 2020 .75mg.  Jan 16, 2021 .685mg (8.7%).  Feb 13, 2021 .62mg. March 12, 2021 .56mg.  May 1, 2021 .375mg.  May 29, 2021 .25mg. June 26, 2021 .0125mg. July 25, 2021 .065mg. August 22, 2021 .048mg.  October 2, 2021 .043mg.  October 10, 2021 .038mg.  October 23, 2021 .035mg.  October 30, 2021 .032mg.  Nov. 13, 2021 .030 mg.  Dec 4, 2021 .0285 mg.  Dec 11, 2021 .0265 mg. Dec 18, 2021 .0246 mg. Dec 25, 2021 .023mg. Jan 1, 2022. 0 mg. OFF COMPLETELY

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Happy2Heal Contributor

Happy2Heal

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4 hours ago, RachelSusan said:

@UnfoldingSky What a great suggestion. Thank you for posting. @Happy2Heal I found this on wikipedia: https://en.wikipedia.org/wiki/MindFreedom_International.  And here is the actual group: https://mindfreedom.org/.  This is thanks to UnfoldingSky. At first glance I didn't see anything about nursing home protection but it is still a start. Perhaps you might want to look around their site a bit more and see if I missed anything that could be of help to you?

thank you and thanks to Unfoldingsky

I will look into this soon

going thru a rough patch right now- knee pain and lack of sleep 

but will be back soon with my input!!

 

1

PLEASE DO NOT SEND ME PRIVATE MESSAGES, thank you. 

  • pysch med history: 1974 @ age 18 to Oct 2017 (approx 43 yrs total) 
  •  Drug list: stelazine, haldol, elavil, lithium, zoloft, celexa, lexapro(doses as high as 40mgs), klonopin, ambien, seroquel(high doses), depakote, zyprexa, lamictal- plus brief trials of dozens of other psych meds over the years
  • started lexapro 2002, dose varied from 20mgs to 40mgs. First attempt to get off it was 2007- WD symptoms were mistaken for "relapse". 
  •  2013 too fast taper down to 5mg but WD forced me back to 20mgs
  •  June of 2105, tapered again too rapidly to 2.5mgs by Dec 2015. Found SA, held at 2.5 mgs til May 2016 when I foolishly "jumped off". felt ok until  Sept, then acute WD hit!!  reinstated at 0.3mgs in Oct. 2106
  • Tapered off to zero by  Oct. 2017 Doing very well. 
  • Nov. 2018 feel 95% healed, age 63 
  • Jan. 2020 feel 100% healed, peaceful and content
  • PRESENT DAYS:  Loving life! ❤️ with all it's ups and downs ;) 
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UnfoldingSky Contributor

UnfoldingSky

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I hope you feel better soon Happy2Heal!  

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

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