The inappropriate use of antipsychotic drugs had a devastating impact on my mom and me. She was chemically restrained with quetiapine (Seroquel), and risperidone (Risperdal) every day for the last four years of her life.
Chemical restraints are a form of abuse. The reasons Mom was sedated could have been addressed and resolved with positive, non-pharmacological approaches to care.
At one point in August 2015, because of my limited visiting “privileges,” I hadn’t seen Mom conscious in about a week and a half. After a particularly sad visit, I decided to defy the cruel, unjustified and abusive rules. The three-minute video below documents the dramatic results, and shows why I became such a vocal advocate against the inappropriate use of antipsychotic medication in “treating” people who live with dementia.
https://myalzheimersstory.com/2019/06/07/just-like-one-flew-over-the-cuckoos-nest/
https://myalzheimersstory.com/2018/03/18/alzheimer-didnt-do-this-drugs-and-dementiajail-did/
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My Alzheimer's Story 
My god, this is awful and terrifying. I don’t understand how they had the right to restrict your visits. What are the “rules”? It’s really scary to me to know that a loving family member and caregiver would be “punished” and restricted in her visits in the way you describe. I am so sorry that your mother experienced this abuse, and profoundly outraged that such abuse continues.
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Yes, to everything you’ve written Lemony. And all of it is precisely what compels me to advocate passionately for better dementia care.
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I also experienced this with my wife, but I put a stop to the psychotic drugs, and you should have been able to do the same. As far as restricting your visits, what kind of place was your mom in? If you were not the person responsible for her, then you should have prevailed with the individual who was in legal control of her care.
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Paul, if I could have put a stop to it, I would have, believe me. The orders and threats came from both the LTCF and the person in control of her care. And with all due respect, you don’t know my story and are in no position to tell me what I should or should not have done or been able to do.
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Susan, you are correct, I do not know your story & you don’t know mine. I am not refuting or judging you, I was merely siding in agreement with your reaction to the use of chemical restraints, and how I was able to stop them.
In my case, I was told by my wife’s doctor that she would be dead in less than 2 months. This was, of course, because their psychotic drugs were preventing her from eating & taking liquids — they were literally killing her. But, I cancelled her DNR and rehydrated her, later reinstating her DNR once she was well again. She lived another 3 years after this incident & I would not have traded a single minute of those remaining 3 years.
So, this was part of my journey, and I offer it on this forum as an educational antidote for anyone else reading this post / blog, not in any way sitting in judgement about your experience or your actions as a loved one. In my case, I looked at the doctors and staff as advisors and assistants to my wife & Me. I took their counsel & when her care became dangerous for her, I put a stop to it.
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Paul, we agree on the danger of antipsychotic drugs. I took care of my mother for a year in her own home before she went into a LTCF. I visited her there every day for almost four years. I fought the entire time to get my mother off the drugs she was on. I went to court to try to get control of her care from the person who had it. I failed on both counts. You can’t imagine the pain I went through watching her being neglected and abused every single day, and being powerless to do anything about it. After she died last summer, I realized how much it had impacted me and I believe I had a mild case of post traumatic stress, despite the fact that we had many joyful and healing times together when she was awake. I knew more about my mother and my mother’s behaviour and how to manage it than any of the staff at the facility, but I wasn’t heard. Quite the opposite in fact: I was vilified and threatened. You were lucky to have the power to do what you did. Many others like myself don’t, and thousands of people with dementia are neglected and abused. There’s a comment from a long-term care nurse to that effect on this story: battle worn before lunch in june
Also, you might be interested in this documentary: https://www.youtube.com/watch?v=tskFkNIzgVo&feature=youtu.be
Thanks for sharing your story. Sorry for the loss of your wife ❤
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Its a sad and a horrible disease. No one knows what caregivers go through, especially with Alzheimers & dementia disease. I so identify with the antipsychotic drugs as mentioned, I had meeting upon meeting about my husband and had them limit him to the very least amount until his behaviour was under control. If it is not under control, nurses and psw’s will not deal with them sadly, I was told this for a fact. I understand their position but what options do we have, its very scarey. Fortunately, he is in a good place now and we can only take one day at a time but I dread what lies ahead, sad for everyone! More behaviour care places needed and nurses and psw’s!! Carolyn
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Thanks for commenting Carolyn. Yes, they won’t deal with them because they are not properly trained and don’t know how. It’s all very tragic. Wishing you love, strength and courage for the future ❤
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My mother in law is going to be leaving her safe – very expensive Alzherimer’s facility in a month or so and being transferred to a facility that takes Medicaid peoples. We are all sad about this – but nothing can be done about that – all her monies have run out. It will be interesting to see how long she lasts in the new place.
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