When I posted a link to 20 caregivers answer the antipsychotic question on a FB caregiver forum and asked caregivers what they thought, I became the subject of a vicious attack from a handful of forum members. “Fuck her and her judgmental ass,” one person wrote.
I was saddened but not surprised by the response. People who feel threatened, overwhelmed and/or afraid often react aggressively. Ironically, that’s one of the main reasons people living with dementia get labeled and sedated. Some family caregivers have no choice but to give their loved ones antipsychotics, and many others believe the misinformation told to them by various sources. I know. I’ve been there.
And, truth be told, when given in the lowest possible doses, for the shortest possible time, these medications may provide temporary relief in untenable situations for some people, without too many adverse side effects. But that’s not what happened with my mom, and it’s not what happens with tens of thousands of others, particularly in long-term care facilities where the inappropriate use of antipsychotics remains a huge problem despite efforts to stop it.
For example, Jessica S. shared her story in a comment on the same blog post:
I agree whole heartedly. My grandmother was diagnosed with Alzheimer’s early on. We put her in assisted living where she could thrive, as we wanted her to have people to watch over her and still have her own space. Was only a month when she fell & broke her arm. They didn’t call us, acted like they had no obligation to & so we took her out & brought her home until we could find another place that would be good for her. (Because of family stealing from my grandmother we had been thru court & have legal guardianship over grandma.
The new place is where the drug war started. I had a fit when I arrived to visit & my grandma was a disaster. She mentioned to the Dr she was having anxiety. Instead of prescribing her a low dose benzos on an as-needed basis they started her on Zoloft, Seroquel & other drugs. It was like my grandmother had end stage Alzheimer’s. She had no idea what was going on & didn’t know much of anything happening to her. It was like she was lost to us. I asked them to take her off all the meds.
Some of them she had to be weaned off of & the Dr was combative telling me that her Alzheimer’s had progressed & this was what happens. I was furious at her. I still battled & demanded they take her off of EVERYTHING. I knew about weaning her off so the next few times I visited they had her on just a couple meds & claimed they were still weaning her off. More time passed & I was there again during numerous med moments & I was surprised to find they were STILL giving her the Zoloft, the Seroquel & her aspirin. That sure explained why she was only “sort of” better.
After numerous discussions I finally went at the Dr, this time snarling & angry like a rabid dog so she would have no doubt about how serious I was & demanded she get my grandmother off of all of it except her aspirin. I was MAD. Finally that ended & grandma got back to her normal self. We ended up moving her again because I felt they didn’t really care about my grandmother & that was probably where her anxiety was coming from.
The “Side Effects” of all 8 meds they had her on was dementia, delusions, memory loss confusion & many other words describing those symptoms. Why would a Dr prescribe that for a patient who already had those problems? To top it off, the Dr was more interested arguing the point of what a “side effect” was versus a “secondary effect” & some other crap, like changing the name would fix the problem. She treated me like a moron.
Little did she know I was also in the medical field & worked for a Dr who treated me like a partner, he taught me way beyond the scope of my job, not because he expected me to practice medicine with him but because he wanted me to be knowledgeable. I went to pharmaceutical meetings with him & learned a whole lot about medication, I also have a natural curiosity that keeps me reading about all things medical. My grandmother’s Dr didn’t know the scope of what she was dealing with & wanted us to obey her & drug my grandmother up so she wouldn’t be a “problem”.
At that point I was just angry that it was even legal to prescribe one of these medications to an Alzheimer’s patient but prescribing 8 of them at once? I think my grandma would have died had we not been paying close attention to her. Now she is in a small assisted living community, only 16 people can live there & it is so new only half of it is full. She was the first to move in. She doesn’t have anxiety anymore & takes only her aspirin. Her Alzheimer’s has only slightly progressed & she is happy there. Paying close attention is key & questioning the Dr is critical when something isn’t right. Those medications are horrid & make the problems worse.
I laughed out loud where Jessica says “& the Dr was combative.” You rock Jessica, I thought. A woman after my own heart.
Why don’t we throw all these destructive labels right back in the faces of the people who insist on applying them to people who live with dementia, and likewise call them “resistant, combative and aggressive” when they don’t respond in the way we want?
You go Jessica.
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