It’s one thing to see someone when they are sedated. It’s quite another to see the sedation taking effect, and the person who doesn’t wish to be sedated trying to fight it off.
Against my wishes and against her will, my mom was sedated with quetiapine at breakfast every day for almost four years. The dose she was given knocked her out cold for several hours. She got another debilitating dose in the evening. They also gave her risperidone twice each day. This drug regimen was an abuse of her human rights.
I had incontrovertible proof that non-pharmacological strategies improved the quality of Mom’s life, and, should they have been fully implemented would have eliminated the “need” to inappropriately sedate her with quetiapine and risperidone. I repeatedly voiced my concerns and shared my evidence. I was ignored, and branded a troublemaker.
It took 45 minutes to an hour for the quetiapine to take full effect. Sometimes, during that window, I would pick Mom up at her Dementia Jail and take her to my house so that when she woke up three or four hours later, we could spend some quality time together.
This is what Mom’s experience looked like during the last five minutes or so before she fell “asleep:”
My mom was a go-getter, she loved to be on the move. Even when she had been living with advancing Alzheimer disease for several years, she told me clearly and directly that she wanted to “keep going.” That was her way. She didn’t want to be sitting and sleeping and missing out on living.
Sadly, Mom didn’t get to live the life she wanted in the end.
When she was moved into a Dementia Jail (aka “nursing home” or “long-term care facility”) in November 2012, her “get up and go” behaviour and her feistiness were challenging for the staff. Instead of finding ways to make the most of her energy, the medical personnel in charge of her care inappropriately prescribed increasing amounts of antipsychotic drugs to chemically restrain her. The drugs caused her to become unsteady on her feet and she started to fall. Instead of reducing the drugs to prevent the falls, they physically restrained her.
If that wasn’t bad enough, her basic care and hygiene needs were often not met. When I went to visit her, which was virtually ever day for four years, the first thing I did was to take her to the bathroom, where, more frequently than not, I would find that her incontinence brief needed to be changed, so I would change it myself.
Here are twenty-five pictures I took during 2013 as I gathered evidence to prove the neglect and abuse I witnessed every day:
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The bulge at the front of Mom’s pants drove me nuts.
“What a crappy design,” I thought to myself ironically each time I saw her, which was every day, religiously.
She’d always been well turned out with great style and panache. Not meticulous or fastidious. Not prim and proper. Not designer, although her wardrobe included several unique pieces. Classic country chic – that was her look. Matching shorts and tops for the golf course. Straight skirt, crisp shirt, cashmere sweater and penny loafers to show million-dollar properties to a high-end clientele.
Now she was living with dementia in a “nursing home” where she was dressed in the same dirty clothes for several days in a row to cut down on laundering costs, and her “adult protective underwear” didn’t fit as it should. As if there wasn’t enough to cry about, the butt-ugly bulge was icing on the dementia cake.
I had “changed” Mom myself many times after asking one of the Dementia Jail staff to show me how. I wanted to do everything I could to make Mom as comfortable as she could be under the circumstances.
“You wrap the long tabs around her waist and attach them at the back with this sticky bit,” the caregiver demonstrated. “It’s kind of like Velcro.”
The tabs overlapped to create a waistband.
“Then you pass the pad through her legs from front to back,” she said as she did it. “The back part also has sticky bits on the corners, they attach to the waistband. It’s sort of like an old-style baby’s diaper, except the place where the safety pins would be is at the back instead of at the front.”
I’d never changed a diaper in my life, but it wasn’t rocket science. This caregiver had been doing it for yonks; her demo and instructions were clear. No doubt she had shared the same procedure with dozens of trainees over the years, passing knowhow from one person to the next.
“But what about the bulge?” I asked.
The ridge started at the bottom right hand side of Mom’s tummy and ran down her upper thigh (think over-endowed male ballet dancer without a cup who “dresses” right). Besides being unattractive, I guessed it would be uncomfortable for her.
“What bulge?” The caregiver hadn’t noticed. I showed her.
“Hmmmm. I don’t know,” she was unhelpful on this score. “All I know is this is the way you put them on.”
The bulge continued to annoy me. I just couldn’t get over the shitty “diaper” design and the ugly bump. But I didn’t say anything more about it to anyone.
One afternoon about year into her stay in jail, I brought Mom to the toilet to change her shortly after I got there for my daily visit. I could smell she was long overdue. When I pulled down her trousers, I found that, besides being full, her “pad” had been put on backwards. The waistband’s long tabs were attached at her belly instead of at the back, as the personal support worker had shown me they should be.
My blood began to boil. Mom’s Dementia Jail hosted student nurses on practicums; a dozen or so had been there for several weeks. Apparently one of them had “done” Mom, but no one had shown her how to “do” her properly.
“You’d think they would read the instructions,” I said to Mom, exasperated. I’d sat her down on the toilet by this time; she had no idea what I was talking about.
“What instructions, Punkie?”
“It’s okay Mom,” I chastised myself for not keeping my mouth shut for her benefit. “I forgot to read the instructions. Don’t worry, I’ll get them now.”
I went to the closet and grabbed the bag of TENA incontinence pads from the shelf and brought it back to the bathroom. Mom couldn’t be left alone for long without risk of her standing up and then falling down, which is what would lead to her death two years later.
I looked at the package. The instructions were poor. A series of three diagrams showed the midriff and upper thighs only. The only clue that this might be the front of the torso was a tiny dot of a belly button. Even then it was hard to figure out. The drawings only showed one perspective. There were no buttocks, nipples or other physical features that would have made it unambiguous.
I extracted a fresh pad to investigate further. Oh my God. Once I examined the pad with a curious eye and laid it on the floor, the cause of the bulge became immediately obvious – the pads were being put on backwards. One of the student nurses had obviously read the instructions or figured out for herself how the pad should be put on properly.
It was impossible not to see which bit was meant to be at the front and which at the back once the pad was relatively flat. One end was much wider and fuller than the other; it should cover the behind. The other was much smaller, narrower and far less bulky; it should go at the front. The bulge was caused by the billowy back of the pad being scrunched up bellow Mom’s belly, between her legs and down the top of her thigh instead of where it should have been – covering her bum.
The problem had nothing to do with the design of the pads and everything to do with how they were being put on.
This incontinence product was clearly meant for someone who could dress herself. The wearer wraps the long tabs around her waist and attaches them at the front like an overlapping belt. She bends down, reaches between her legs and pulls the front part through and up, then attaches its two corners to the “belt” with the sticky bits and voila!
Here’s a demo:
Easy, fast, and simple for someone who is able to do it herself; not so for a caregiver assisting someone with dementia who needs help in the toilet. For a caregiver, putting this type of pad on the way it is designed to be worn is cumbersome, slow and problematic.
I know because as soon as I discovered how the pads should be worn, I began putting them on properly. I reckoned it would be more comfortable and sanitary for Mom – not to mention that it eliminated the unsightly bulge at the front of her trousers, and reduced the likelihood of the pad overflowing and drenching the back as had happened on several occasions that I knew of.
I asked the staff questions about the toileting procedures, and suggested the pads be put on as they were designed to be. But even when I shared what I had learned, the jail staff continued to put Mom’s pads on back to front. Why? Because it was faster and easier and that’s the way they’d always done it. Why change? Who cares?
“People with dementia don’t know the difference,” some might have said.
“No one’s ever complained,” others might have echoed.
People with dementia may or may not know the difference; but I’m sure they would feel the difference just as anyone else would feel the difference if their underwear were on back to front.
Likewise, people with dementia may not complain in the same way we might. Maybe we don’t hear them because we haven’t taken the time to learn their language. Perhaps we’re not listening well enough.
My mom was much more aware and “with it” than people gave her credit for, and she knew it. Nevertheless, she may not have been able to fully articulate if, when and why something felt uncomfortable. Ill-fitting clothing that pinched or pulled or was too loose or too tight might have caused her to be anxious and distressed without her being able to say why.
I would be really unhappy if I were made to wear my underwear back to front. Wouldn’t you be? This is a perfect metaphor for the way we currently treat the elderly and people with dementia. Like my Mom’s pads, the whole damn thing is the reverse of how it should be.
Similar stories of neglect and abuse are shared by tens of thousands of others in North America and around the world. If we don’t make significant changes soon, it will be the story of millions more in the not-too-distant future.
It’s time for a change that isn’t ass backwards.
*Note: I wrote this post long before the tragedy of COVID-19 manifested. Sadly, many of my fears became a reality with the pandemic. Still, there is time to prevent more needless suffering in the future. Please speak up for better healthcare for us all, young and old.
**Note: I’ve had comments from care workers saying they have to put pads on backwards in order to make it more difficult for residents to remove them for one reason or another. I completely reject that notion as yet another form of physical restraint. Furthermore, there was no reason whatsoever that would have justified putting my mother’s pads on backwards. It was simply a matter of ignorance, convenience and efficiency.
Imagine being made to wear incontinence briefs so full of waste they weighed a pound and half to two pounds. Might you feel uncomfortable? Anxious or tearful? Maybe even traumatized?
“Your mom’s been weepy and anxious since I got here this afternoon,” Nurse Ratched* said as I approached. She was writing notes in a binder that lay on top of the meds cart. I stopped beside her.
“She’s not feeling well. Maybe something to do with the food at dinner, or a BM. Anyway, she’s lying in bed,” Ratched said.
“Okay, I’ll check on her.” I continued down the third-floor hallway toward my mother’s room, the last one on the right.
Mom was in bed, as Ratched had said. The antique lamp on the pine side table we’d taken from her bedroom at home cast a soft yellow light on the pillow beside her head. Otherwise the room was dark. The colour of her cheeks matched the white facecloth that lay folded on her forehead. Her mouth was open; her down duvet was tucked under her chin. She looked as if she might be dead.
“Mom, are you okay?” No answer. I lay my hand gently where I guessed her right shoulder might be under the cover, and pressed lightly. “Mom?” Still no answer. I pulled the duvet down a bit. She was dressed in her cream turtleneck with the pink flower on the side and her purple cashmere sweater. “Mom, are you okay?”
“I’m a little shaky,” she said finally, her voice barely audible, her eyes still closed. I pulled the duvet down further. Her right hand lay a little below her waist, against the dark brown of her corduroy trousers; it was shaking violently. I’d never seen her shake like that. I touched her left hand; it was quivering. She’s not cold. I felt the cloth on her head: wet and cool.
“Do you need to go to the peeps, Mom?”
“No.”
“Let’s try anyway, Mom. I know you don’t need to go, but let’s try anyway, okay? It might help you feel better.”
“I don’t need to go. I don’t think I can stand up. I feel a little shaky.”
“I know Mom, but let’s try,” I said as lifted the duvet from her legs and feet. She had socks and shoes on. I helped her sit up. The shaking in her hands had subsided somewhat; she placed them beside her thighs and pushed herself up from the bed. Her small bathroom was three feet away directly in front of her. I switched the light on, and guided her forward until she was beside the toilet, and then I gently swivelled her around.
She unbuttoned and unzipped her trousers, lowered them to her knees, sat on the toilet, reached around behind, found a piece of stool clinging to her bottom, grabbed it and dropped it into the toilet bowl, leaving feces all over her hand. It was then I realized she didn’t have a pull-up incontinence brief on.
I took some toilet paper from the roll on the wall beside her and cleaned Mom’s hand. When I went to put the soiled tissue in the small garbage can next to her feet, I saw that the plastic bag liner was folded over on top of itself to cover something within. I bent down and “opened” the plastic bag. My free hand flew to cover my mouth and nose as my stomach heaved. The stench was sickening. I quickly dropped the ball of dirty toilet paper into the plastic bag, and folded it back over what was inside.
I straightened up. Took a couple of deep breaths. Reached over to the towel rack, removed the single blue washcloth that was there (blue was for “peri care;” white for everything else), turned the hot water tap on and soaked the cloth under the flow.
“I’m going to give you a bit of a wash, okay Mom?” I said before I attended to her hygiene.
Once she was clean, I got her undressed, into her nightgown and safely to bed. Then I went back to the bathroom. I lifted the bag out of the bin. It weighed three or four pounds. I put it in the sink and opened it. This time I was prepared for the disgusting smell. Nevertheless, it again made me gag. Inside was a soaking wet pull-up full of shit.
My chest tightened; blood rushed to my cheeks. I knew exactly how that shitty pull-up came to be in that bag. I remembered the morning I had found an incontinence brief in Mom’s ensuite ballooned to five times it’s normal size and full of water because she’d tried to wash it out in the sink. I had been amazed at how much liquid one of those briefs could hold. I’d felt such tenderness for Mom when I’d made the discovery. Now I was infuriated. I gathered the edges of the top of the bag into my hands, and tied them in a knot.
I walked out of the bathroom, said goodnight to Mom, gave her a kiss, and then went out into the hall, bag in hand. Ratched was still there with the med cart. I went over to her.
“What’s this?” I said, holding up the bag.
“I know,” she said. “I’ll throw it out for you.”
“I know? What do you mean, I know?” I wanted to scream at her. “My mother is alone in her room in the dark, in bed, fully clothed, but without an incontinence pad. She’s shaking like a leaf, she still has her shoes on, she’s in distress and you ‘know,’ but you’re not doing anything about it?”
But I didn’t scream at her.
“No,” I said. “I’m keeping it. My voice was calm and level. “This is unacceptable.”
“I don’t know what happened. It must be from the first shift,” she said. “I only came on at three o’clock.”
When I got home, I immediately composed an email to the family member in control of my mother’s care describing in detail what I had found and why.
“Nurse Ratched may not know what happened, but I do, or at least I can take a highly educated guess,” I wrote, and then continued:
“At some point during the day, Mom went into her bathroom and found that she had had a bowel movement in her pull up. How long it was there and when she discovered it is unknown, but it must have been quite awhile. She hates to be wet or have shit in her “panties”, so she took off her trousers, and her “panties,” and tried to wash the panties in the sink. When she couldn’t get them clean, she probably gave up and left them in the sink, because she doesn’t throw out panties. Then, because she couldn’t find new panties to put on, she put her trousers on without any panties/pull-up. All of this must have been really stressful on her because she has a hard time dressing herself now. I can’t imagine how humiliated she must have felt. She never goes without panties. This may have been what caused her to feel anxious and weepy.
Somebody must have found the soaking shitty pull-up in the sink, and put it in the garbage bin, then folded the ends of the over it to contain the smell. This kind of sequence is beyond Mom’s capability. Whoever discovered the dirty pull-up, did not bother to check Mom to see if she needed a new one. I know it didn’t just happen before I got there, because her trousers smelled like urine, which means she was without a pull-up for some time; how long I don’t know. All of this would have been REALLY upsetting, and stressful for Mom. Having panties on and being dry is extremely important to her. This kind of situation is unacceptable. It could have been avoided if Mom had a one-on-one caregiver with her as she should have every day.”
I closed with “I expect you will want to address it with [the Director of Nursing] personally, and to do whatever is necessary to ensure Mom has one-on-one caregivers with her every day to avoid this kind of situation recurring and causing Mom undue stress and discomfort.”
I sent the email that night. A few days later, the Director of Nursing met with the person in control of my mother’s care and his wife. Nurse Ratched was made to apologize to them. A few days after that, the Director of Nursing met with me. There was no apology during our meeting. On the contrary. The Director of Nursing threatened to stop me from seeing my mother. It was the first of several similar threats she made to me over the next three and half years. She also told me that if I didn’t stop complaining about the care my mother was receiving that the care would get worse not better.
Those are two of the reasons people stop advocating for their family members in long-term care facilities — they’re afraid the care will worsen or they will be barred from visiting. There are other reasons as well. Care advocates’ fears are justified. Family members really do get banned from seeing their loved ones as punishment for advocating on their behalf. The hours I was allowed to see my mother were cruelly restricted during the last eighteen months of her life because of my advocacy.
Eight months after the pull-up incident, I would come to know what Nurse Ratched had written in my mother’s file that day (a more readable version is below the pics):
Nurses notes 13/02/09: “Upon my arrival resident appeared depressed and sad. Restless. Down for supper. Continued to be restless, and getting up from supper table several times. After supper brought to second floor by another resident saying she did not feel well. Appeared anxious. [??] calmed. Brought to third floor to her room. Settled on bed for a rest. Daughter into visit at 1915. Found resident anxious and hand shaking. Vital signs taken blood pressure up, no temperature. Rechecked vital signs; blood pressure down, resident appeared calmer. In good spirits. HS care done, then settled to bed.”
Long-term care facility staff can write whatever they want, and leave out whatever they want in a resident’s file. What appears in the file or on the chart is the nurse’s or care worker’s version of events. But what about the resident’s version? Who sees their perspective? What is their experience? Who listens to their voice? Who advocates on their behalf?
It’s important to expose neglect and abuse. Often, it’s not easy. Just uncovering the facts can be extremely challenging. Sometimes it takes a very long time. Because people lie. Then they tell more lies to cover up their original lies. They hide the shit they don’t want others to see, just like somebody hid that shitty pull-up in the waste basket in Mom’s bathroom because they didn’t want to deal with it, or with my mom.
Six years — almost to the day — after the Director of “Care” at the #DementiaJail in which Mom resided stood up in court and lied about the way my mother was being treated under her supervision. Now, I’m preparing a complaint to lodge against the DoC with the Quebec Order of Nurses. Part of preparing the complaint involves going over all the videos, audios, images and notes I made to document the neglect and abuse my mother was subjected to for four years until she died on August 17, 2016.
This video shows Mom’s condition on December 1, 2013, after I had asked the charge nurse not to give my mother a morning dose of antipsychotics because she could barely walk. My request was denied. I took Mom to my house where she slept sedated in a chair for several hours before waking up and again experiencing great difficult walking. I called it the Seroquel shuffle.
No one with a modicum of common sense would have given my mother antipsychotic medication in the condition she was in before breakfast that day, which was essentially the same condition she was in when she woke up in the afternoon at my home. The debilitating effects of the drugs were shocking; they are documented in the video below.
Six years later, it still makes my blood boil.
To add insult to injury, I was branded a troublemaker for advocating on my mother’s behalf, and for the last eighteen months of her life the time I was allowed to spend with her each day was restricted.
I believe what goes around comes around. The abuse and neglect will all be fully revealed one day.
“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.
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“I have read about the changes Health Minister Barrette is proposing to reduce the use of antipsychotic drugs in Quebec nursing homes, but fail to understand why these changes will take years to implement effectively.
What has been done since Barrette’s announcement last November? How long does it take to say, “no more abuse” and prohibit the use of antipsychotic orders for routine care and management of dementia? Consider the unnecessary suffering residents and loved ones will endure until the bureaucrats get their acts together.
The auto industry recalls a vehicle the moment a problem is detected. Defective children’s toys are withdrawn from the market immediately. Grocers act quickly if contaminated food threatens our well-being.
The lack of urgency to immediately reduce the use of chemical restraints, not even approved by Health Canada for treatment of dementia despite the known side effects, including premature death, speaks volumes. The secondary effects of a drugged stupor include falls, bedsores and urinary tract infections, which alone cost the health care system millions of dollars every year. What is wrong with this picture?“
This sorry state of affairs is not confined to Quebec. It applies equally to the rest of Canada, the United States and the United Kingdom as well.
Coincidentally, a Facebook follower (L.B.) who lives in British Columbia wrote this in response to the same HRW video: “…when Mom’s medication is decreased she becomes more lively (laughing, smiling, chatting, more aware of what is happening around her), and when she is medicated more she becomes like a zombie who stares off into space.”
I asked L.B. why the nursing home in which her mom resides medicates her into a zombie-like state when her mother is clearly better/happier when the medication is reduced. Her reply was telling.
“Apparently, the explanation is that Mom gets ‘testy’ if the medication is decreased too much,” she wrote. “I’m not sure exactly what that means given that Mom was always witty, sarcastic, and outspoken. She still says ‘No!’ if she doesn’t want something to happen with regard to herself. In my opinion, that’s her right.”
Of course it’s her right. It was my mother’s right as well. It’s also the right of hundreds of thousands of others worldwide who have been and still are inappropriately and abusively medicated into a stupor, just like L.B.’s mother. And just like my mom was for the last four years of her life.
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A 165-page Human Rights Watch report published on February 5, 2018, confirms what many dementia care advocates and activists, and even the US government itself has known for years: there’s a drug abuse problem in the country’s long-term care industry, and elderly people who live with dementia are bearing the brunt of it.
According to the report itself, it is:
“…based on visits by Human Rights Watch researchers to 109 nursing facilities, mostly with above-average rates of antipsychotic medication use, between October 2016 and March 2017 in California, Florida, Illinois, Kansas, New York, and Texas; 323 interviews with people living in nursing facilities, their families, nursing facility staff, long-term care and disability experts, officials, advocacy organizations, long-term care ombudsmen, and others; analysis of publicly available data; and a review of regulatory standards, government reports, and academic studies.”
I wish I had been surprised by what I read in the report, which may be downloaded here, but I wasn’t. I saw it all in the Canadian ElderJail in which my mom spent the last four years of her life. Like the 179,000 people across the United States who are given inappropriately prescribed antipsychotics every week, Mom suffered the consequences of being sedated for no good reason, as do thousands of others like her in Canada.
Below are 15 truth-telling quotes I pulled from the HRW report and the video that goes with it. The quotes are from experts on the front lines of this issue:
1 ) “Too many times I’m given too many pills…. [Until they wear off], I can’t even talk. I have a thick tongue when they do that. I ask them not to [give me the antipsychotic drugs]. When I say that, they threaten to remove me from the [nursing] home. They get me so I can’t think. I don’t want anything to make me change the person I am.” Walter L., an 81-year-old man given antipsychotic drugs in a Texas nursing facility
2 ) “If a family brings up the issue of not using antipsychotic drugs, usually, what we hear is that the facility says to them ‘Well, it’s either the antipsychotic drugs or you’re going to have to find someplace else for this person to be because we can’t provide the care they need without the drugs.'” Advocate for better care
3 ) “It used to be like a death prison here. We cut our antipsychotics in half in six months. Half our residents were on antipsychotics. Only 10 percent of our residents have a mental illness.” Director of nursing
4 ) “They just wanted you to do things just the way they wanted.” An 87-year-old woman who was given antipsychotic drugs against her will
5 )”My husband has been in antipsychotics since 2009. In one nursing home, he was totally drugged until you couldn’t even talk to him.” Wife of man with Lewy body dementia
6 ) “[The underlying issue is] the nursing homes don’t want behaviors. They want docile.” Social worker who worked at a nursing facility
7 ) “I see way too many people overmedicated…. [Facilities] see it as a cost-effective way to control behaviors.” State surveyor
8) ) “[It] knocks you out. It’s a powerful, powerful drug. I sleep all the time. I have to ask people what the day is.” A 62-year-old woman in a Texas nursing facility who was given Seroquel without her knowledge or consent
9 ) “Not only do [antipsychotic drugs] not do what we want them to do, but they cause harm, which is really antithetical to what we should all be about in healthcare.” Dr. Jonathan Evans, former direction of the American Medical Association
10 ) “[My mother] would just sit there like this. No personality. Just a zombie. The fight is gone.” Daughter of a 75-year-old Kansas woman in Kansas regarding what happened when the nursing facility her mother was in started giving her mother an antipsychotic drug
11 ) [One of the most common] ‘behaviors’ that leads to people being given an antipsychotic is if they constantly cry out for help.” Facility social worker
12 ) “At the root of the problem is the resident’s expression of unmet need or distress or discomfort. And a professional caregiver’s duty is to indentify the source of that problem and address it.” Nursing home reform advocate
13 ) “You actually see them decline when they’re on an antipsychotic. I think it’s sadder than watching someone with dementia decline.” Director of nursing
14 )”In the first place, instead of hiring staff, they just put them on medication to control them. When we went to see her, she wouldn’t talk, she wouldn’t laugh, she wouldn’t cry. She would just sit and stare like she wasn’t even there.” Daughter of a woman with dementia living in a nursing home
15 ) “We are supposed to be doing informed consent. It’s on the agenda. But really, antipsychotics are a go-to thing. ‘Give ‘em some Risperdal and Seroquel.’ We tell the family as we’re processing the order. The family is notified.” Director of nursing
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The bulge at the front of Mom’s pants drove me nuts.
Nurses notes 13/02/09: “Upon my arrival resident appeared depressed and sad. Restless. Down for supper. Continued to be restless, and getting up from supper table several times. After supper brought to second floor by another resident saying she did not feel well. Appeared anxious. [??] calmed. Brought to third floor to her room. Settled on bed for a rest. Daughter into visit at 1915. Found resident anxious and hand shaking. Vital signs taken blood pressure up, no temperature. Rechecked vital signs; blood pressure down, resident appeared calmer. In good spirits. HS care done, then settled to bed.”
My Alzheimer's Story 