Category: Advocacy

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.

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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”

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:

• don’t fence me in: a true story about the impact of physical restraints on my mom who lived with alzheimer disease
• hidden restraints: hidden abuse
• safety pins & call bells
• who is responsible when people living with dementia are robbed of their dignity in long-term care?

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”