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:
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
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.
Natalia Loskutova, Director of Evaluation at American Academy of Family Physicians (AAFP), knows what she’s talking about. Her professional interests include translational research, neuroscience, and aging especially in the relationship between cognitive and physical decline in dementia. Her current research interest is in cognitive and non-cognitive changes in early/pre-symptomatic Alzheimer’s’ disease, disease predecessor, early detection and disease progression.
“It is very sad that despite story after story of the victims of this approach and plentiful research evidence of the harms resulting from the use of several medication classes in persons with dementia that these practices still exist and, most disappointingly, are accepted by many.
You’re right Natalia, it is sad.
~~~~~~~~~~~~~~~~~
“You said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
“I believe we hide behind the word safety, I don’t always blame staff but more so the situation, support for older people is extremely underfunded and my opinion undervalued. The video of your mum is not even subtle, it is full on restraint that will be dressed up as ‘safety’ or ‘falls risk’. What we don’t do is talk about how we could make it safe; we just say it is not safe and accept it. Care for the elderly needs to change, here in Scotland I have written to our government asking how this can be done, and when I deliver training in care homes this is an area I focus on. I personally think large care homes should be closed and smaller more person-centred homes opened, even though it may be slightly less cost-effective.”
Spot on Derek!
~~~~~~~~~~~~~~~~~
“You said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
The shocking truth is we don’t know the truth at all, even though we think we do.
Here’s the Marketplace “teaser” version of the video, in which I’ve embedded a time stamp:
In an investigative programme entitled “Crying out for care” (see the full segment at the end of the open letter here), CBC’s Marketplace characterizes the incident as an assault in which a person with dementia attacked and caused the death of a fellow resident in a long-term care facility (LTCF) in Ontario, Canada. They infer the “assault” was unprovoked and caused by dementia, and that a contributing factor is a reduction in the use of antipsychotics in Ontario nursing homes.
This is seriously irresponsible reporting on behalf of the CBC and Marketplace. It’s misinformed and misleading, and it contributes to the stigma surrounding Alzheimer’s disease and other dementias. Furthermore, it hinders rather than helps the process of solving the issue of violence in institutional care. I’ve written as much to Marketplace by email and through their website, and have received no response to date. So I published my email in an open letter here.
But let’s go back to the video teaser/trailer (V1) above. What really happens?
Although we see it for only a second, it appears the man in the dark shirt (DSM), approaches the man in the light shirt (LSM) from behind on LSM’s left side. LSM seems to be taller and bigger; he turns around counter clockwise. The next 16 seconds is difficult to watch. Although it’s hard to see, it may be that DSM shoves, pushes or hits LSM in the stomach area; LSM shoves back; DSM swings at him, LSM swings back and because he is taller and bigger, his blows are more “effective,” and DSM ends up on the floor.
Meanwhile, the text boxes on the left-hand side of the video say: “Warning: This video contains graphic content.” Prepare to be shocked! “Security footage shows a nursing home resident attacking another resident.” To be fair, it doesn’t specify who is “attacking” whom, but then “84-year-old Meyer Sadoway was assaulted and died four days later” runs alongside the video of LSM punching DSM in the head and DSM falling to the ground. No conclusion other than LSM is the “assailant” and DSM is the victim may be drawn from the combination of words and video.
But there are a number of issues that make what appears to be obvious, not so obvious at all.
First and foremost, we don’t know what happened in the months, weeks, days, and hours, before the incident occurred. Perhaps DSM and LSM have never gotten along and have a history of altercations; in which case, how and why do they find themselves alone together in the hallway?
Or maybe they have been best buddies up until this day, and something set them off. We don’t know.
In a CBC article that preceded the release of V1 (the teaser) and the full marketplace segment, we’re told that DSM’s sisters say that both DSM and LSM may have been aggressive with others. DSM’s sisters also say DSM found the unit he was on too noisy and he often became frustrated. “He lashed out aggressively toward other residents on several occasions in the months before he died,” they said according to the article.
Further, the article states that the sisters learned after the fact that “their brother’s assailant had become increasingly violent and attempted to fight other residents in the days before the attack.” We don’t know how they might have “learned” that, who said it, who witnessed it, when, where, or how.
Equally important, we don’t know what happened in the minutes and seconds before the dust up. Maybe LSM had been walking down the hall minding his own business, and DSM had been harassing him from behind until LSM finally turned around and the fight broke out. Or maybe they had had fisticuffs already and LSM walked away and DSM followed and then they fought again. Or some other scenario.
We also don’t know what, if anything, was said (or shouted or screamed). Perhaps DSM had been spitting insults at LSM as they walked down the hall. Maybe DSM came up behind LSM and said, “turn around you son of a bitch,” and when LSM turned around, DSM hurled obscenities at him and hit him in the stomach. We don’t know, because there’s no sound on the video. And because of the camera angle and the way the men are positioned, it’s hard to tell who was the provocateur. Who was it that pushed, shoved, or “lashed out” first? Was LSM truly the assailant? Or was it the other way around? Was LSM defending himself against DSM, and because LSM was bigger, DSM got the worst of it? One thing is sure, at the start of V1, LSM’s left side, and perhaps his back are turned toward DSM.
It’s clear (to me at least), based on what I see in V1, that this is a fight, not an unprovoked assault. What remains unclear is who started it. If I were a betting person, based on the fact that LSM appears to have been walking away from DSM before the action starts, and he turns around to face DSM, that it’s more likely that DSM is the instigator.
But I could be wrong. I can’t know for sure, because I am missing a whole lot of information with respect to what caused LSM and DSM to end up in a fight. If I had access to the footage starting five or 10 seconds earlier, I would have more information and could make a more educated guess. But perhaps even another 15 or 20 seconds would not be enough to make a call on what caused the altercation. There are simply too many variables. And if I can’t make a call, how can Marketplace?
This is not to make light of a tragic situation, or to lessen the seriousness of what happened. Two men who were supposed to be safe in care got in a fight. One of them died, likely as a result of the fight. Those are the facts. But the truth of what happened and why remains to be seen. One part of the truth is that most resident-on-resident incidents such as this one are not the result of dementia as was irresponsibly implied in this “investigative” piece.
The rest of the truth is out there. But it’s not on CBC’s Marketplace.
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
I wrote and sent the text below in a comment, via the Marketplace website and also by email shortly after the Marketplace programme “Crying out for care” aired at the end of January 2018. So far, I haven’t received a response. I am also writing a three-part series of posts related to the CCTV video segment at the start of “Crying for care” (which may be viewed in its entirety at the end of this post), the first instalment of which is entitled “the shocking truth behind this tragic video.”
~~~~~~~~~~~~~~~~~~~~
Dear CBC Marketplace,
There are multiple issues with your story “Crying out for care,” particularly with respect to the opening segment, chief amongst which is that dementia is not the cause of the majority of resident-on-resident incidents such as this. More on that here:
It’s unhelpful to attribute these incidents to dementia when the behaviours of most people living with dementia are reasonable reactions to the circumstances and environments in which they find themselves:
It’s also unhelpful (as well as extremely irresponsible) to suggest there is a causal effect between a reduction in the use of antipsychotics and an increase in resident-on-resident interactions with results like the one the shown in the video. A year-long, pan-Canadian collaborative led by the Canadian Foundation for Healthcare improvement found that incidents of physical aggression DECREASE when the use of antipsychotics is reduced:
While your statisticians may have found that antipsychotic use has gone down and resident-on-resident incidents have gone up, that doesn’t mean the two are correlated. Furthermore, the side effects of antipsychotics include increased anxiety and aggression; thus:
In fact, the causes of resident-on-resident incidents such as these are the same as the causes of the pervasive, persistent and systemic abuse and neglect that is part and parcel of long-term care in Canada and elsewhere:
Furthermore, I don’t think you are being accurate when you say this is a “year-long investigation,” and if you are, I suggest you hone your investigative techniques because there’s not much depth in this “investigation.” It’s superficial, inflammatory and sensationalist in many places.
Ironically, as a dementia care advocate and activist, I fully agree the system is broken and requires a major overhaul. But the way you present the information with respect to resident-on-resident incidents in particular is counterproductive at best, and irresponsible and damaging at worst.
This is a highly complex issue with no easy solutions. I would ask you to revisit it and provide a more nuanced, balanced and useful discussion of the issues at hand.
Please dig deeper in your investigation.
Thank you,
Susan
Susan Macaulay
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
“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.
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
My Alzheimer's Story 
“It is very sad that despite story after story of the victims of this approach and plentiful research evidence of the harms resulting from the use of several medication classes in persons with dementia that these practices still exist and, most disappointingly, are accepted by many.