Advocacy, Antipsychotic drugs, Life & Living

against my wishes and against her will

 

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:”

https://myalzheimersstory.com/2017/12/03/four-years-later-is-too-late-for-my-mom-but-its-not-for-others/

https://myalzheimersstory.com/2016/07/26/40-side-effects-of-seroquel/

https://myalzheimersstory.com/2017/04/15/40-risperdal-side-effects-2/

Take my short survey on behaviour here.

Advocacy, Real life, Toward better care

dire state of ltc in ontario and across canada is not news

Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults died during the pandemic of 2020/21. This real life example illustrates how our voices are not heard.

~~~~~~~~~~~~~~

During the week of April 26, 2021, two separate reports, both of them “scathing,” described the long-time sorry state of affairs in long-term care (LTC) in Ontario.

The content of the reports was widely covered by the media, which is kind of surprising. Because it’s not news. The media is meant to report news. And the appalling state of long-term care in Canada is not news. It’s just the way it is, and the way it has been for decades.

The fact that LTC in Canada sucks is not news. At least not to Canadian elder care and dementia care advocates such as myself, or to many family members and care partners of LTC residents in Ontario, or across our country. Nor is it news to advocates, family members and care partners in Australia, the United Kingdom, or the United States.

We’ve all known about the shortcomings, the abuse, the neglect, and the atrocities “revealed” in these reports for a long time. In fact, we’ve been screaming about them at the top of our lungs for years, in some cases for decades. We are not shocked by the findings. Not at all. It’s just more of the same ole same ole.

When I came back to Canada from overseas in 2011 to care for my mother who lived with dementia, I knew less than nothing about providing such care. It was a steep learning curve. When she was relocated to a LTC facility in Quebec in the fall of 2012, I thought she was going to a place where people would care for her. That professionals who knew what they were doing would oversee her care. That she would be respected, not neglected.

I was wrong. Within a week, I threw all those misconceptions out the window and began advocating like crazy for my mom. I was unsuccessful.

In 2013, I initiated legal action to try to get control of her care from the sibling to whom she had entrusted it. In 2014, the facility’s Director of Nursing and its on-contract physician both lied in the court proceeding. The judge ruled against me. I visited my mother every day for the next two and half years. I witnessed her continued neglect and abuse. I started a blog. My visits were restricted as punishment. I documented everything.

Anyone with any common sense who spends time with a family member in most LTC facilities in Canada will quickly realize the system is broken. You would have to be deaf and blind not to. The proof is legion.

In October 2016, two months after my mother died, and almost four years before the onset of the COVID-19 pandemic, I wrote a post describing the reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities.

In January 2017, I spoke before a senate committee about the abuse my mother had experienced. The committee members listened, but it seems not to have made a difference. In November 2017, Quebec’s Minister of Health announced an initiative to reduce the use of antipsychotics in LTC. Too late for my mom; she had already been dead a year.

In September 2019, I submitted a twenty-page complaint to the Order of Nurses of Quebec regarding the conduct of the Director of Nursing of the facility in which my mother resided. It included an in-depth analysis of what had transpired as well as audio, video and photographic evidence that clearly showed the abuse and neglect. A year later I received a one-page whitewash in reply. I made a follow-up complaint to the Order’s Review Committee in December 2020. I haven’t received an answer to the follow-up. I have also complained to the College of Physicians and Surgeons about the physician’s conduct. No response.

In 2020, I tweaked my 2016 post slightly and re-blogged it under the title “it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks.”

 Both of these posts outlined the same basic issues it has taken an auditor general and reams of experts months to conclude. They are:

1 ) Ageism & stigma
2 ) Lack of awareness
3 ) Poor leadership
4 ) Lack of training/understanding
5 ) Low staff-to-resident ratios
6 ) Warehouse-like environments
7 ) Dis-incentivized workers
8 ) Uncaring cultures
9 ) Ineffective “policing”
10 ) The bottom line

I mean really. C’mon.

We’re not talking rocket science here. We don’t need reports. We need ACTION.

it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks

hidden restraints: hidden abuse

20 questions to ask yourself about “wandering”

Advocacy, Real life, Toward better care

quebec order of nurses accepts ridiculous excuses for physically restraining mom living with dementia

Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults have died during the pandemic of 2020/21. This real life example illustrates how our voices are not heard.

~~~~~~~~~~~~~~

Article 118.1 of the (Quebec) Law on Health Services and Social Services is clear with respect to physical and chemical restraints; it reads:

“Force, isolation, mechanical means or chemicals may not be used to place a person under control in an installation maintained by an institution except to prevent the person from inflicting harm upon himself or others. The use of such means must be minimal and resorted to only exceptionally, and must be appropriate having regard to the person’s physical and mental state.”

Nevertheless, my mother, who lived with dementia, was chemically and physically restrained in a long-term care facility for almost four years from November 2012 until she died in August 2016.

In September 2019, I lodged a complaint with the Quebec Order of Nurses regarding the facility’s Director of Nursing [XXX] who was responsible for my mother’s “care.” My eighteen-page complaint is comprehensive, evidence-based, and well-documented with photographs, videos and audio recordings. It includes sixty-three hyperlinks to evidence on this blog and other third-party sites. It is based on government policies and law, as well as the Quebec Order of Nurses’ Code of Ethics.

On the subject of physical restraints, my complaint says:

[XXX] allowed staff to physically restrain my mother using reclining chairs, wheelchairs, tables, alarms, and other means, all of which flew in the face of measures undertaken by the Quebec Department of Social Services to reduce the use of such restraints since 2002. See these links:

It took about eight months for my complaint to get to the top of the investigator’s pile at the Quebec Order of Nurses, and another six months for the investigation to be completed. On November 20, 2020, I received a letter from the complaint investigator. On the subject of my mother being physically restrained every day for almost four years he wrote:

“We questioned the reason a chair was placed under the footrest of your mother’s recliner. [XXX] explained that this measure was necessary to elevate your mother’s lower limbs and that the chair was broken. She also claimed that this was done with your brother’s consent as he was responsible for giving consent on your mother’s behalf. Finally, she said that the call bell was always available to your mother so that she could call the personnel if she wanted to get

We took care to explain to [XXX] that it was indeed a form of restraint that should not be used even to compensate for a broken equipment. She clearly understood that it was not appropriate to do so and asserted that this would not occur again.”

As I read what he had written, I became more and more incensed. I was flabbergasted that he accepted such patently ridiculous excuses in the face of the mountains of evidence I had provided including dozens of images and several videos of my mother being restrained.

On December 17, 2020, I followed up with the Quebec Order of Nurses’ Review Committee about the shortcomings of the investigation. With respect to the ridiculous excuses and lies [XXX] supplied on the subject of physical restraints, I said:

“I will address these ludicrous assertions one by one.

“…this measure was necessary to elevate your mother’s lower limbs…”

Not true. No doubt [XXX] used the excuse of the thrombosis my mother experienced in late 2012/early 2013 as the reason for elevating her lower limbs. Did she mention the reason why my mother got the thrombosis in the first place? It was because they weren’t providing her enough opportunities to exercise. Regardless, the first pictures of the chair under the recliner were taken on September 10, 2014, eighteen months after the thrombosis occurred, and when swelling in my mom’s legs was not problematic. Strangely, when it was problematic, [XXX] and her staff did little to alleviate the swelling in my mom’s lower limbs. They didn’t even provide her with proper socks to help her heal.

“…and that the chair was broken.”

This is an outright lie. The chair was not broken. I was in my mother’s room virtually every day. The recliner worked perfectly well. I know because I rescued my mother from it every time I found her there. How could [XXX] possibly know if the recliner was broken or not? She didn’t go around the place testing the integrity of the furniture. As I said above, the first pictures of a chair under the footrest were taken on September 10, 2014. The second pictures (of a different chair under the footrest of the same recliner) were taken in February 2016. That means if the chair was indeed broken (which it was not), then it would have been broken for at least 17 months. If the chair was broken (which I repeat once more it was not), wouldn’t it have made sense to have it fixed or replaced?

“She also claimed that this was done with your brother’s consent…”

Come on! Is it reasonable to believe the [personal support workers] went to the nurses and asked them to phone my brother to see if it was okay for them to put a chair under the footrest of my mother’s recliner when they wanted to? At least [the investigator] had the grace to use the word “claimed,” because this is clearly also a lie. Furthermore, even it were true, is it okay to abuse someone by physically restraining them because someone gave you permission to do so? Would it be acceptable, for example, for a teacher to tie a student to a chair if the student’s parents had given her permission to do so? Of course not! Because it’s not okay to tie children to chairs, period.

“Finally, she said that the call bell was always available to your mother so that she could call the personnel if she wanted to get up.”

My jaw literally dropped when I read this. I had to read it over several times to believe what I was reading. My mother had dementia. She didn’t know what a “call bell” was, let alone that pulling one would summon help. This is just so far out of the realm of possibility that it is incomprehensible to me that anyone who has ever dealt with people living with dementia at the stage my mother was would say something as inane as “she could have used the call bell.” This is utter nonsense. Plus, look at the pictures I provided. Do you see a call bell? No. You may be able to see a cord that is attached to my mother’s shirt with a safety pin that is attached to an alarm in the wall so an alarm rings in the unlikely event that my mother would be able to make her way to her feet (which she would not because she was trapped in the recliner). And even if she did know what a call bell was and what its purpose was and even if she were able to assess when she needed help, my mother would have had to reach behind her, over her head, behind her shoulder and way to the back in a very awkward way to pull said call bell. Or, she would have had to understand that she needed to reel in the extra “ribbon” to ring the bell. She wasn’t capable of doing any of those things at that stage of the disease, which you can hear for yourself if you listen to the audio at the link I provided in my complaint.

The fact that [XXX] said my mother could have used the call bell is incredible. Either [XXX] has very little understanding of dementia or she was desperate to use any excuse, no matter how implausible, to exonerate herself and avoid taking responsibility for the abuse my mother was subjected to. The fact that [the investigator] actually accepted what [XXX] said as the truth is equally unbelievable. It is unconscionable that people like my mother are being neglected and abused by nurses like [XXX] while your organization turns a blind eye to the ill treatment.

Furthermore, my complaint was about the ways in my mother was physically restrained every day for almost four years. The chairs being placed under the footrest comprised one example among many. Despite the evidence I provided, [the investigator] seems to have completely missed the fact that my complaint was that [XXX] “allowed staff to physically restrain my mother using reclining chairs, wheelchairs, tables, alarms, and other means.” She was trapped/restrained in other recliners (without chairs under the footrests) every day as I showed in the pictures I provided.

Such physical restraints are prohibited by Article 118.1 of the Law on Health Services and Social Services in Québec which says that such measures are not common practice, but only used exceptionally, after having assessed all other restrictive solutions. The resident’s situation must be carefully studied with due consideration for his physical and psychological state to determine the most appropriate intervention.

As of March 1, 2021, I have not received an answer to my letter to the Quebec Order of Nurses’ Review Committee. Based on my experience of elder care in Quebec and Canada, I’m not hopeful.

Still, one must #FightTheGoodFight

hidden restraints: hidden abuse

20 questions to ask yourself about “wandering”

2013, Advocacy, Antipsychotic drugs, Toward better care

25 pics that prove my mom was neglected and abused in long-term care

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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50 more pics that prove my mom was neglected and abused in long-term care

7 forms of elder abuse and how to spot the signs to stop it

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Advocacy, Antipsychotic drugs, Life & Living

i called it the “seroquel shuffle”

It’s February 4, 2020. Six years after the fact.

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.

When lies are told, the truth unfolds.

against my wishes and against her will

four years later is too late for my mom. but it’s not for others.

40+ seroquel side effects

40 risperdal side effects

Take my short survey on behaviour here.

Advocacy, Challenges & Solutions, Toward better care

7 reasons why physicians continue to prescribe antipsychotic drugs to people who live with dementia when they shouldn’t

There is irrefutable evidence that prescribing antipsychotic drugs to people who live with dementia does more harm than good in most cases. These drugs are NOT approved for use in dementia care in most countries.

So why are physicians still prescribing these medications to people who live with dementia?

Because physicians:

  1. are often pressured by care partners, family members and/or care workers and nurses to provide a “magic pill” that will fix situations that care partners, family members and care workers find challenging
  2. don’t know any better and/or are irresponsible
  3. don’t understand that the behaviour family members and care workers find challenging is, in most cases, NOT caused by dementia but rather by factors anyone would find stressful and distressing
  4. aren’t aware that non-pharmacological interventions are more effective than drugs in changing behaviour of people living with dementia that dementia care partners and care workers find challenging
  5. don’t have time to properly counsel dementia care partners, care workers and others in effective non-drug interventions
  6. don’t fully understand the negative impact and harmful side effects that antipsychotic drugs have on people who live with dementia
  7. believe (erroneously!) that they are doing the right thing

#BanBPSD #educatecarepartners #educatephysicians #educatenurses #educatecareworkers

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

20 compelling reasons to rethink the way we label and medicalise the behaviour of people who live with dementia #BanBPSD

40+ seroquel side effects

 

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Advocacy, Antipsychotic drugs, Toward better care

brilliant lol take on old folk tune strikes powerful paradigm-shifting chord

Wow! Bravo to gerontologist, author, and dementia care advocate Dr. Al Power who teamed up with Heather Luth, Dementia Program Coordinator at Schlegel Villages, to produce this superb parody of how the behaviour of people with dementia is mislabelled by those who subscribe to the damaging artificial construct of so-called Behavioural and Psychological Symptoms of Dementia (BPSD).

I’ve provided lots of my own research and evidence proving without a doubt that the artificial construct of BPSD is misleading, counterproductive and just plain wrong. Now, Al and Heather illustrate it simply, humourously, and powerfully with a two-minute tune and a dozen flashcards they put together for Dementia Alliance International’s participation in the 2019 World Rocks Against Dementia event.

Enjoy!

take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

7 problems with BPSD

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

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Advocacy, Antipsychotic drugs, Toward better care

like one flew over the cuckoo’s nest

I should have known better than to invite my photographer friend Edith to do a day-in-the-life photoshoot of Mom and I on a Friday.

I had intended for Edith to capture in images the wonderful time Mom had when I brought her to my place for lunch or dinner. I wanted to show how well she was able to function, how she helped me make lunch, how close we were, how capable she was, and how much we enjoyed spending time together.

But Friday was bath day. That meant Mom was more likely to be even more drugged than usual. Why? Because she “resisted” being undressed and put in the noisy whirlpool bath with a sling-like lift that must have frightened her. Sometimes she resisted “violently,” just as 98 per cent of “normal” people would under similar circumstances (per my Short Survey on Behaviour).
Adding fuel to the fire was Betsy,* the nurse who gave the baths; she was as mean as a junkyard dog. I don’t recall ever seeing her smile during my four years of daily visits to Mom’s dementia jail. On several occasions, she mocked Mom right in front of me; in one instance making fun of the fact that Mom had to pull herself along with her feet in the wheelchair to which she eventually became confined. Mom wasn’t the only resident I witnessed being subjected to Betsy’s abuse, and one of the care workers confided in me that she would sooner send her mother to hell than place her in a home that Betsy worked in.

Betsy was close to six feet tall, and solid. Real solid. They called her “the sergeant major.” Mom, on the other hand, was five foot two, osteoporosis having shrunk her a couple of inches in the previous decade. She was in her mid-eighties, living with dementia, and sedated with antipsychotic drugs because some of the staff–the ones who failed to engage her in ways that worked for her–found her challenging.

Mom’s bath time aggression was carefully recorded in the nurses’ notes I got copies of when I launched a legal bid to get control of her care in August 2013.

On April 12, 2013, for example, Betsy wrote:

Then a week later:

Hmmmm. So it wasn’t okay for Mom to call out for help when she felt threatened, and under attack, but it was perfectly fine for Betsy to do so?

I know Mom’s reactions could have been prevented with the right approach; I know it with one hundred per cent certainty. But Betsy either didn’t know the right approach, didn’t have time to use it or didn’t want to use it. Caroline or I helped Mom shower every morning for more than a year, and Mom never hit, slapped, kicked or pinched either of us. Ever. Sometimes she was slightly reluctant, saying she didn’t need a shower (for example), but we always managed to convince her, and the process always unfolded without incident. In fact, mostly it was a pleasant experience for her and for us. But Betsy didn’t use the right approach, and everything went pear shaped as a result.

Of course Mom and dementia were blamed for the “bad bath time behaviour,” and when things got really out of control, they gave her an extra dose of whatever to subdue her. That’s why and how she ended up like this on that failed photoshoot Friday in 2014:

This video of my catatonic mom haunts me. I can’t imagine anyone watching it without being shocked, even horrified. It reminds me of the final scenes of One Flew Over the Cuckoo’s Nest in which Jack Nicholson’s “troublemaker” character Randle McMurphy is made vegetative after being lobotomized. I remember crying when, out of love and compassion, McMurphy’s big native friend (Chief) kills him by smothering him with a pillow. I never dreamed I would one day see the same vacant look in my mother’s eyes.

We don’t lobotomize people anymore–for good reason. As one writer puts it:

“It was a barbarous procedure with catastrophic consequences, and yet it was once widely accepted and even earned a Portuguese doctor a Nobel Prize. In the annals of medical history, it stands out as one of medicine’s biggest mistakes and an example of how disastrously things can go wrong when a treatment is put into widespread use before it has been adequately tested.”

Maybe one day we will also stop giving antipsychotic drugs to people living with dementia for the same undeniable reasons, and they won’t be tortured and abused like my mother was for the last four years of her life.

#BanBPSD

*not her real name

7 reasons i post “ugly” pictures of my amazing mom on social media

drugs, not dementia, robbed me of my mom and her of her mind

four years later is too late for my mom. but it’s not for others.

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

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Take my short survey on behaviour here.

Advocacy, Antipsychotic drugs, Toward better care

drugged & drooling

Many of the comments people make on my posts, and the stories they send me by email and snail mail break me heart. Some literally bring me to tears. This is one of them – a comment CL made when I posted “an open letter to the dementia community worldwide” on the MAS Facebook page:

“When my father was in the hospital for a stroke, a gentleman used to show up every day. He was an older patient, and he used to tell my dad great stories and jokes from his younger years. My dad thoroughly enjoyed these daily visits.

One day my dad asked me to check on “Robbie” because he hadn’t seen him in a couple of days. So I checked with the nursing staff and they said he was moved to a different ward. So I went to look for him. I found him restrained in a chair, in a zombie daze and drooling. It was heartbreaking!

When I questioned the nurses, they said someone complained about him walking around talking to other patients, so they did this horrifying drugging and restraining!. I cried. Then I told my dad he had died. I couldn’t tell him the truth. It was awful!.

P.S. Robbie never hurt or touched anyone. He just stood at the bottom of the bed and talked. Still haunts me to this day. Five years now.”

The very same thing happened to my gregarious and fun-loving mom: she was physically and chemically restrained for being friendly and sociable. Just the thought of it still makes me cry. Imagine the state of poor “Robbie,” who had brought others joy with his “wandering,” if his friend’s daughter felt it was better to tell her father Robbie was dead rather than tell him the truth of what had happened. Better to say he was dead. Think about that.

I believe it’s a crime to do this to vulnerable people, and in particular to vulnerable elderly. We must stop it. And we must #BanBPSD.

drugs, not dementia, robbed me of my mom and her of her mind

four years later is too late for my mom. but it’s not for others.

safety pins & call bells

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