“Why didn’t you just tell the people at the long-term care facility to stop giving your mother the drugs?” readers ask when I share posts like this one, this one, this one, or this one. Or, “Why didn’t you move her back home or to another facility?” The questions always read more like accusations than real curiosity.
“Because I wasn’t in legal control of her care,” is the short answer. But it was a lot more involved than that.
My mother signed a legal document (before she was diagnosed with Alzheimer’s disease), giving complete control of her money and well-being to a family member (not me) in the event of her incapacity.
The other family member and I had diametrically opposed views on how my mother should be cared for when the time came. I wanted more and better care; the person in legal control wanted less and cheaper. My mother had ample financial resources, which I felt should be spent on her care; the person in legal control wished to preserve her estate.
Soon after Mom went into Dementia Jail, she was sedated for normal behaviour that could have been addressed with the right care and the right environment. I loved my mom, and when I saw the impact that increasing doses of inappropriately prescribed quetiapine and risperidone had on her, I asked politely, then begged, and then fought tooth and nail to get her off them.
When my advocacy failed, I initiated legal proceedings to try to get control of her care. Mom could have easily afforded non-pharmacological ways to address issues that had led to her being inappropriately sedated with antipsychotic drugs, the side effects of which would eventually contribute to her death. I had incontrovertible proof that these non-pharmacological strategies worked, and that they would improve the quality of Mom’s life should they be fully implemented.
However, I had never been in court before, and I mistakenly thought that when professionals such as doctors, nurses and social workers swore to tell the truth they would indeed do so. I hadn’t considered that people would lie, or that facts would be misrepresented and twisted. What an eye-opener! In hindsight, it’s hard to believe how naïve I was. The so-called medical “experts” ignored me (in the first instance), and the judge disbelieved me (in the second).
Despite losing in court, I continued to fight for Mom’s rights for the next two and half years. I visited her virtually every day. I provided her weekly healing music sessions, and shared our experiences with others through social media. My transparency angered the administration at ElderJail, and I was forced to remove all mentions and pictures of Mom from my blog under threat of being denied access to her. I complied. Then my visiting “privileges” were confined to between 1 p.m. and 3 p.m. when Mom was mostly “asleep.” The cruelty of this was unimaginable. I again complied, again under threat of being denied any access to her at all. I had to cancel the music sessions she loved because of the time constraint.
Antipsychotic drugs are often given to people living with dementia out of ignorance. Many family members who love their parent, spouse or whomever, feel they are doing the best thing by giving them these medications (in relatively few cases, they may be). Doctors, nurses and others convince family members that antipsychotics are a must, and long-term care facilities threaten to evict people or deny access to family members who advocate for fewer drugs and better care.
A small minority of people who live with dementia may benefit from these types of medications. But the vast majority do not. If and when antipsychotics are given to someone who lives with dementia, it should be at the lowest possible dose for the shortest possible time. My mother was sedated into a zombie-like state for hours every day for four years. That was a violation of her rights and a form of abuse.
Mom died on August 17, 2016. When she did, I could no longer be silenced with threats. It was too late for Mom, but it may not be too late for others. So I continue to advocate against the kind of neglect and abuse my mother suffered, and for the kind of care she deserved and didn’t get.
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My Alzheimer's Story 
Your experiences with your Mom’s residence and your court case is so valuable to others, Susan. As you noted, you were unprepared for both the legal and political ramifications of the authority granted by your mother to the other family member. Sadly, most people wouldn’t think of questioning a doctor’s prescription, which is why it’s SO IMPORTANT that people know how inappropriate these drugs are for PLWD. Finally, I remember hearing that residences add a surcharge to the drugs they administer. There is profit to be had in giving seniors drugs, even in a country with Medicare. I’m sure it’s worse in the USA, where Big Insurance is involved as well as Big Pharma.
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Thanks Lorrie B., your comments and insights are always welcome, not to mention encouraging! I had no idea about potential surcharges for administering meds, but yes, that makes sense. Some places charge extra for just about everything.
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