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”

Advocacy, Care Partnering, Interviews, Videos

what are the challenges and benefits of involving patients in healthcare education?

The obvious answer to “what are the benefits of patients, care partners and healthcare providers working together?” is that collaboration produces better care.

What is required for good collaboration between those who care and those who are being cared for ? I believe open minds, curiosity and humility are the cornerstones for creating a good care experience for all concerned.

More in the video below on my answer to the fifth question in the project aimed at developing educational materials for students enrolled in the healthcare faculty at a local university. 

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with the answers to the other questions:

1) “Why should we involve patients in healthcare education?”

2) How should we involve patients in the education of healthcare providers?

3) What do you think healthcare providers think about including patients in healthcare education?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

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why patients and care partners should be involved in healthcare education

how should we involve patients in healthcare education?

what do healthcare providers think about including patients in healthcare education?

Advocacy, Care Partnering, Interviews, Videos

how are you involved in educating healthcare providers and what are your experiences?

I learned a lot during the time I was a care partner to my mom who lived with dementia at the end of her life. I share many of the things I learned on this blog. I’ve also done workshops and webinars to help care workers and students better understand the nature of dementia and the people who live with it.

When I was interviewed with respect to the development of educational materials for students enrolled in the healthcare faculty at a local university, I shared my experience about sharing my experience!

When the interviewer asked if I had been involved in educating healthcare providers (the fourth question in the interview), I told her of my experience as well as what has worked for me: 

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with my answers to the other questions:

1) “Why should we involve patients in healthcare education?”

2) How should we involve patients in the education of healthcare providers?

3) What do you think healthcare providers think about including patients in healthcare education?

5) What are the challenges and benefits of involving patients in healthcare education?

Take my short survey on behaviour here.

why patients and care partners should be involved in healthcare education

how should we involve patients in healthcare education?

what do healthcare providers think about including patients in healthcare education?

Advocacy, Care Partnering, Interviews, Videos

what do healthcare providers think about including patients in healthcare education?

Both healthcare providers and patients must participate in the care process to make the system work well. Achieving participation and collaboration from both “sides” requires an adjustment in the mindsets of all involved.

This is the essence of my answer to the third question I was asked when I was interviewed with respect to the development of educational materials for students enrolled in the healthcare faculty at a local university.

When the interviewer asked “What do you think healthcare providers think about including patients in healthcare education?” I answered frankly that everybody needs to take a different tack if we are to achieve success: 

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with my answers to the other questions:

1) “Why should we involve patients in healthcare education?”

2) How should we involve patients in the education of healthcare providers?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

5) What are the challenges and benefits of involving patients in healthcare education?

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why patients and care partners should be involved in healthcare education

Advocacy, Care Partnering, Interviews, Videos

how should we involve patients in healthcare education?

When I was invited to contribute to the development of educational materials for students enrolled in the healthcare faculty at a local university in 2019, I jumped at the opportunity.

As part of the project, I was interviewed about my views on including patients and care partners in the education of healthcare providers.

I answer the second question “How should we involve patients in the education of healthcare providers?” below.

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with the rest of my answers:

1) “Why should we involve patients in healthcare education?”

3) What do you think healthcare providers think about including patients in healthcare education?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

5) What are the challenges and benefits of involving patients in healthcare education?

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why patients and care partners should be involved in healthcare education

what do healthcare providers think about including patients in healthcare education?

Advocacy, Care Partnering, Interviews, Videos

why patients and care partners should be involved in healthcare education

When I was invited to contribute to the development of educational materials for students enrolled in the healthcare faculty at a local university in 2019, I jumped at the opportunity.

As part of the project, I was interviewed about my views on including patients and care partners in the education of healthcare providers.

The answer to the first question “Why should we involve patients in healthcare education?” is self evident in my opinion. The short answer is to enable providers to deliver better care. Listen to the two-minute answer in this video:

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with the rest of my answers:

2) How should we involve patients in the education of healthcare providers?

3) What do you think healthcare providers think about including patients in healthcare education?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

5) What are the challenges and benefits of involving patients in healthcare education?

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how should we involve patients in healthcare education?

what do healthcare providers think about including patients in healthcare education?

Advocacy, Antipsychotic drugs, Music, Videos

she couldn’t sing because she was sedated

My mother, who lived with dementia, was chemically and physically restrained every day for the forty-five months she lived in a dementia jail (aka a long-term care facility or nursing home).

These restraints could have been avoided if the medical personnel in charge of her care had addressed the root causes of the behaviours they found challenging in her. All they needed to do was to take a closer look at what was going on around Mom. If I could do it, surely they should have been able to.

When Mom was sedated, she was unable to do things she loved to do such as walking and singing. Here she is not singing (because she had been sedated an hour or so before), at some of the weekly sing-alongs conducted by volunteers at the place she resided:

Besides cruelly sedating her with antipsychotic drugs, no one who was involved with my mother’s care listened to my request to provide her with music therapy. So I hired a music therapist myself and the three of us enjoyed many happy afternoons together after the worst sedative effects of the chemical restraints had worn off. Here’s an example of one of those wonderful sessions:

a magical musical alzheimer gift

And this one was just four days before Mom died on August 17, 2016:

one last sing-along: august 13, 2016

I miss you Mom.

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

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

alzheimer disease didn’t do this. drugs and dementia jail did

10 reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

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Advocacy, Care Partnering, Toward better care

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

If you don’t have proof, you won’t be believed. Sometimes, even if you DO have proof, you are not believed.

I learned that when I went to court to try to get control of my mother’s care in early 2014. I had lots of proof, but I still lost. I was devastated. But the loss didn’t stop me from documenting the neglect and abuse my mother continued to suffer until her death in August 2016.

The neglect included not having her incontinence pads changed as frequently as they should have been, having the pads put on backwards, not having wounds properly dressed and not having the level of one-on-one care she required.

The abuse consisted primarily of being chemically restrained with antipsychotic drugs (which caused her to stumble, bump into things, fall and sustain a continual stream of injuries), and being physically restrained with recliners, wheelchairs, and various types of alarms.

These fifty photographs (all taken in 2014), show what this neglect and abuse looked like.

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If you have a family member in long-term care:

  • learn what constitutes neglect and abuse
  • visit often at different times of the day
  • watch how staff treat other residents
  • document what you see and hear
  • advocate for proper care

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

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

alzheimer disease didn’t do this. drugs and dementia jail did

10 reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

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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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