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, Real life, Toward better care, Videos

incontinence pads put on backwards every day for four years in long-term “care”

The bulge at the front of Mom’s pants drove me nuts.

“What a crappy design,” I thought to myself ironically each time I saw her, which was every day, religiously.

She’d always been well turned out with great style and panache. Not meticulous or fastidious. Not prim and proper. Not designer, although her wardrobe included several unique pieces. Classic country chic – that was her look. Matching shorts and tops for the golf course. Straight skirt, crisp shirt, cashmere sweater and penny loafers to show million-dollar properties to a high-end clientele.

Now she was living with dementia in a “nursing home” where she was dressed in the same dirty clothes for several days in a row to cut down on laundering costs, and her “adult protective underwear” didn’t fit as it should. As if there wasn’t enough to cry about, the butt-ugly bulge was icing on the dementia cake.

I had “changed” Mom myself many times after asking one of the Dementia Jail staff to show me how. I wanted to do everything I could to make Mom as comfortable as she could be under the circumstances.

“You wrap the long tabs around her waist and attach them at the back with this sticky bit,” the caregiver demonstrated. “It’s kind of like Velcro.”

The tabs overlapped to create a waistband.

“Then you pass the pad through her legs from front to back,” she said as she did it. “The back part also has sticky bits on the corners, they attach to the waistband. It’s sort of like an old-style baby’s diaper, except the place where the safety pins would be is at the back instead of at the front.”

I’d never changed a diaper in my life, but it wasn’t rocket science. This caregiver had been doing it for yonks; her demo and instructions were clear. No doubt she had shared the same procedure with dozens of trainees over the years, passing knowhow from one person to the next.

“But what about the bulge?” I asked.

The ridge started at the bottom right hand side of Mom’s tummy and ran down her upper thigh (think over-endowed male ballet dancer without a cup who “dresses” right). Besides being unattractive, I guessed it would be uncomfortable for her.

“What bulge?” The caregiver hadn’t noticed. I showed her.

“Hmmmm. I don’t know,” she was unhelpful on this score. “All I know is this is the way you put them on.”

The bulge continued to annoy me. I just couldn’t get over the shitty “diaper” design and the ugly bump. But I didn’t say anything more about it to anyone.

One afternoon about year into her stay in jail, I brought Mom to the toilet to change her shortly after I got there for my daily visit. I could smell she was long overdue. When I pulled down her trousers, I found that, besides being full, her “pad” had been put on backwards. The waistband’s long tabs were attached at her belly instead of at the back, as the personal support worker had shown me they should be.

My blood began to boil. Mom’s Dementia Jail hosted student nurses on practicums; a dozen or so had been there for several weeks. Apparently one of them had “done” Mom, but no one had shown her how to “do” her properly.

“You’d think they would read the instructions,” I said to Mom, exasperated. I’d sat her down on the toilet by this time; she had no idea what I was talking about.

“What instructions, Punkie?”

“It’s okay Mom,” I chastised myself for not keeping my mouth shut for her benefit. “I forgot to read the instructions. Don’t worry, I’ll get them now.”

I went to the closet and grabbed the bag of TENA incontinence pads from the shelf and brought it back to the bathroom. Mom couldn’t be left alone for long without risk of her standing up and then falling down, which is what would lead to her death two years later.

I looked at the package. The instructions were poor. A series of three diagrams showed the midriff and upper thighs only. The only clue that this might be the front of the torso was a tiny dot of a belly button. Even then it was hard to figure out. The drawings only showed one perspective. There were no buttocks, nipples or other physical features that would have made it unambiguous.

I extracted a fresh pad to investigate further. Oh my God. Once I examined the pad with a curious eye and laid it on the floor, the cause of the bulge became immediately obvious – the pads were being put on backwards. One of the student nurses had obviously read the instructions or figured out for herself how the pad should be put on properly.

It was impossible not to see which bit was meant to be at the front and which at the back once the pad was relatively flat. One end was much wider and fuller than the other; it should cover the behind. The other was much smaller, narrower and far less bulky; it should go at the front. The bulge was caused by the billowy back of the pad being scrunched up bellow Mom’s belly, between her legs and down the top of her thigh instead of where it should have been – covering her bum.

The problem had nothing to do with the design of the pads and everything to do with how they were being put on.

This incontinence product was clearly meant for someone who could dress herself. The wearer wraps the long tabs around her waist and attaches them at the front like an overlapping belt. She bends down, reaches between her legs and pulls the front part through and up, then attaches its two corners to the “belt” with the sticky bits and voila!

Here’s a demo:

Easy, fast, and simple for someone who is able to do it herself; not so for a caregiver assisting someone with dementia who needs help in the toilet. For a caregiver, putting this type of pad on the way it is designed to be worn is cumbersome, slow and problematic.

I know because as soon as I discovered how the pads should be worn, I began putting them on properly. I reckoned it would be more comfortable and sanitary for Mom – not to mention that it eliminated the unsightly bulge at the front of her trousers, and reduced the likelihood of the pad overflowing and drenching the back as had happened on several occasions that I knew of.

I asked the staff questions about the toileting procedures, and suggested the pads be put on as they were designed to be. But even when I shared what I had learned, the jail staff continued to put Mom’s pads on back to front. Why? Because it was faster and easier and that’s the way they’d always done it. Why change? Who cares?

“People with dementia don’t know the difference,” some might have said.

“No one’s ever complained,” others might have echoed.

People with dementia may or may not know the difference; but I’m sure they would feel the difference just as anyone else would feel the difference if their underwear were on back to front.

Likewise, people with dementia may not complain in the same way we might. Maybe we don’t hear them because we haven’t taken the time to learn their language. Perhaps we’re not listening well enough.

Robbed of their voices, people with dementia use their physicality to communicate. As a result, they are often sedated for aggressive behaviour that is caused by the way we interact with them rather than by the disease itself. We are often the cause, they are the ones that get the blame.

My mom was much more aware and “with it” than people gave her credit for, and she knew it. Nevertheless, she may not have been able to fully articulate if, when and why something felt uncomfortable. Ill-fitting clothing that pinched or pulled or was too loose or too tight might have caused her to be anxious and distressed without her being able to say why.

I would be really unhappy if I were made to wear my underwear back to front. Wouldn’t you be? This is a perfect metaphor for the way we currently treat the elderly and people with dementia. Like my Mom’s pads, the whole damn thing is the reverse of how it should be.

Similar stories of neglect and abuse are shared by tens of thousands of others in North America and around the world. If we don’t make significant changes soon, it will be the story of millions more in the not-too-distant future.

It’s time for a change that isn’t ass backwards.

*Note: I wrote this post long before the tragedy of COVID-19 manifested. Sadly, many of my fears became a reality with the pandemic. Still, there is time to prevent more needless suffering in the future. Please speak up for better healthcare for us all, young and old.

**Note: I’ve had comments from care workers saying they have to put pads on backwards in order to make it more difficult for residents to remove them for one reason or another. I completely reject that notion as yet another form of physical restraint. Furthermore, there was no reason whatsoever that would have justified putting my mother’s pads on backwards. It was simply a matter of ignorance, convenience and efficiency.

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

the story of the dirty pull-up

crazy daughter weighs mom’s wet “nappy” and writes open letter to minister of health about it

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Advocacy, Our stories, Toward better care

the story of the dirty pull-up

Imagine being made to wear incontinence briefs so full of waste they weighed a pound and half to two pounds. Might you feel uncomfortable? Anxious or tearful? Maybe even traumatized?

“Your mom’s been weepy and anxious since I got here this afternoon,” Nurse Ratched* said as I approached. She was writing notes in a binder that lay on top of the meds cart. I stopped beside her.

“She’s not feeling well. Maybe something to do with the food at dinner, or a BM. Anyway, she’s lying in bed,” Ratched said.

“Okay, I’ll check on her.” I continued down the third-floor hallway toward my mother’s room, the last one on the right.

Mom was in bed, as Ratched had said. The antique lamp on the pine side table we’d taken from her bedroom at home cast a soft yellow light on the pillow beside her head. Otherwise the room was dark. The colour of her cheeks matched the white facecloth that lay folded on her forehead. Her mouth was open; her down duvet was tucked under her chin. She looked as if she might be dead.

“Mom, are you okay?” No answer. I lay my hand gently where I guessed her right shoulder might be under the cover, and pressed lightly. “Mom?” Still no answer. I pulled the duvet down a bit. She was dressed in her cream turtleneck with the pink flower on the side and her purple cashmere sweater. “Mom, are you okay?”

“I’m a little shaky,” she said finally, her voice barely audible, her eyes still closed. I pulled the duvet down further. Her right hand lay a little below her waist, against the dark brown of her corduroy trousers; it was shaking violently. I’d never seen her shake like that. I touched her left hand; it was quivering. She’s not cold. I felt the cloth on her head: wet and cool.

“Do you need to go to the peeps, Mom?”


“Let’s try anyway, Mom. I know you don’t need to go, but let’s try anyway, okay? It might help you feel better.”

“I don’t need to go. I don’t think I can stand up. I feel a little shaky.”

“I know Mom, but let’s try,” I said as lifted the duvet from her legs and feet. She had socks and shoes on. I helped her sit up. The shaking in her hands had subsided somewhat; she placed them beside her thighs and pushed herself up from the bed. Her small bathroom was three feet away directly in front of her. I switched the light on, and guided her forward until she was beside the toilet, and then I gently swivelled her around.

She unbuttoned and unzipped her trousers, lowered them to her knees, sat on the toilet, reached around behind, found a piece of stool clinging to her bottom, grabbed it and dropped it into the toilet bowl, leaving feces all over her hand. It was then I realized she didn’t have a pull-up incontinence brief on.

I took some toilet paper from the roll on the wall beside her and cleaned Mom’s hand. When I went to put the soiled tissue in the small garbage can next to her feet, I saw that the plastic bag liner was folded over on top of itself to cover something within. I bent down and “opened” the plastic bag. My free hand flew to cover my mouth and nose as my stomach heaved. The stench was sickening. I quickly dropped the ball of dirty toilet paper into the plastic bag, and folded it back over what was inside.

I straightened up. Took a couple of deep breaths. Reached over to the towel rack, removed the single blue washcloth that was there (blue was for “peri care;” white for everything else), turned the hot water tap on and soaked the cloth under the flow.

“I’m going to give you a bit of a wash, okay Mom?” I said before I attended to her hygiene.

Once she was clean, I got her undressed, into her nightgown and safely to bed. Then I went back to the bathroom. I lifted the bag out of the bin. It weighed three or four pounds. I put it in the sink and opened it. This time I was prepared for the disgusting smell. Nevertheless, it again made me gag. Inside was a soaking wet pull-up full of shit.

My chest tightened; blood rushed to my cheeks. I knew exactly how that shitty pull-up came to be in that bag. I remembered the morning I had found an incontinence brief in Mom’s ensuite ballooned to five times it’s normal size and full of water because she’d tried to wash it out in the sink. I had been amazed at how much liquid one of those briefs could hold. I’d felt such tenderness for Mom when I’d made the discovery. Now I was infuriated. I gathered the edges of the top of the bag into my hands, and tied them in a knot.

I walked out of the bathroom, said goodnight to Mom, gave her a kiss, and then went out into the hall, bag in hand. Ratched was still there with the med cart. I went over to her.

“What’s this?” I said, holding up the bag.

“I know,” she said. “I’ll throw it out for you.”

“I know? What do you mean, I know?” I wanted to scream at her. “My mother is alone in her room in the dark, in bed, fully clothed, but without an incontinence pad. She’s shaking like a leaf, she still has her shoes on, she’s in distress and you ‘know,’ but you’re not doing anything about it?”

But I didn’t scream at her.

“No,” I said. “I’m keeping it. My voice was calm and level. “This is unacceptable.”

“I don’t know what happened. It must be from the first shift,” she said. “I only came on at three o’clock.”

When I got home, I immediately composed an email to the family member in control of my mother’s care describing in detail what I had found and why.

“Nurse Ratched may not know what happened, but I do, or at least I can take a highly educated guess,” I wrote, and then continued:

“At some point during the day, Mom went into her bathroom and found that she had had a bowel movement in her pull up. How long it was there and when she discovered it is unknown, but it must have been quite awhile. She hates to be wet or have shit in her “panties”, so she took off her trousers, and her “panties,” and tried to wash the panties in the sink. When she couldn’t get them clean, she probably gave up and left them in the sink, because she doesn’t throw out panties. Then, because she couldn’t find new panties to put on, she put her trousers on without any panties/pull-up. All of this must have been really stressful on her because she has a hard time dressing herself now. I can’t imagine how humiliated she must have felt. She never goes without panties. This may have been what caused her to feel anxious and weepy.

Somebody must have found the soaking shitty pull-up in the sink, and put it in the garbage bin, then folded the ends of the over it to contain the smell. This kind of sequence is beyond Mom’s capability. Whoever discovered the dirty pull-up, did not bother to check Mom to see if she needed a new one. I know it didn’t just happen before I got there, because her trousers smelled like urine, which means she was without a pull-up for some time; how long I don’t know. All of this would have been REALLY upsetting, and stressful for Mom. Having panties on and being dry is extremely important to her. This kind of situation is unacceptable. It could have been avoided if Mom had a one-on-one caregiver with her as she should have every day.”

I closed with “I expect you will want to address it with [the Director of Nursing] personally, and to do whatever is necessary to ensure Mom has one-on-one caregivers with her every day to avoid this kind of situation recurring and causing Mom undue stress and discomfort.”

I sent the email that night. A few days later, the Director of Nursing met with the person in control of my mother’s care and his wife. Nurse Ratched was made to apologize to them. A few days after that, the Director of Nursing met with me. There was no apology during our meeting. On the contrary. The Director of Nursing threatened to stop me from seeing my mother. It was the first of several similar threats she made to me over the next three and half years. She also told me that if I didn’t stop complaining about the care my mother was receiving that the care would get worse not better.

Those are two of the reasons people stop advocating for their family members in long-term care facilities — they’re afraid the care will worsen or they will be barred from visiting. There are other reasons as well. Care advocates’ fears are justified. Family members really do get banned from seeing their loved ones as punishment for advocating on their behalf. The hours I was allowed to see my mother were cruelly restricted during the last eighteen months of her life because of my advocacy.

Eight months after the pull-up incident, I would come to know what Nurse Ratched had written in my mother’s file that day (a more readable version is below the pics):


Nurses notes 13/02/09: “Upon my arrival resident appeared depressed and sad. Restless. Down for supper. Continued to be restless, and getting up from supper table several times. After supper brought to second floor by another resident saying she did not feel well. Appeared anxious. [??] calmed. Brought to third floor to her room. Settled on bed for a rest. Daughter into visit at 1915. Found resident anxious and hand shaking. Vital signs taken blood pressure up, no temperature. Rechecked vital signs; blood pressure down, resident appeared calmer. In good spirits. HS care done, then settled to bed.”

No mention of the shitty pull-up. No mention of the stench. No mention of my fury.

Long-term care facility staff can write whatever they want, and leave out whatever they want in a resident’s file. What appears in the file or on the chart is the nurse’s or care worker’s version of events. But what about the resident’s version? Who sees their perspective? What is their experience? Who listens to their voice? Who advocates on their behalf?

It’s important to expose neglect and abuse. Often, it’s not easy. Just uncovering the facts can be extremely challenging. Sometimes it takes a very long time. Because people lie. Then they tell more lies to cover up their original lies. They hide the shit they don’t want others to see, just like somebody hid that shitty pull-up in the waste basket in Mom’s bathroom because they didn’t want to deal with it, or with my mom.

The thing is, when lies are told, the truth eventually unfolds.

* Not her real name

3 reasons family and friends of people who live with dementia in long-term care facilities don’t report abuse and neglect

3 more reasons family and friends of people who live with dementia in long-term care facilities don’t report abuse and neglect

6 reasons why staff in long-term care facilities don’t report incidents of elder abuse and neglect

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

crazy daughter weighs mom’s wet “nappy” and writes open letter to minister of health about 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

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Advocacy, Inspiration, Life & Living, Love

imagine how much suffering could be spared!

My friend Lorrie B. is an amazing writer, editor, translator and primary care partner to her parents, both of whom live with dementia. Lorrie is also an insightful blogger who documents her care partnering experiences here:

Like me, Lorrie is also insatiably curious, and, since becoming her parents primary care partner, has done extensive research related to dementia (as have I!). Despite having read reams and reams of dementia-related stuff, Lorrie and I agree the article referenced in this post is one of the best we’ve come across on living with dementia. Lorrie left this comment:

Wow. I’m with you, Susan, this is one of the best articles about “living with dementia” that I’ve read in the past three years of scouring the media. Such a beautiful and valuable perspective, level-headed and lyrical. I saw both my parents in many of the instances that she mentions – if we had more of this thinking, imagine how much suffering could be spared! Honestly, if people with dementia can teach us to think more with our hearts than our heads, it would benefit everyone to be in their world and feel the power of love beyond the brain. Thank you so much for finding and sharing this.

Lorrie’s with me and I’m with her – we’ll all benefit and suffer way less when we feel the power of love beyond the brain.

You said it Lorrie B.!

#FightTheGoodFight #WeCanCareBetter


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.


One of Lorrie B.’s blog posts: Lesson #29: Hope Springs a Kernel

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Advocacy, Inspiration, Life & Living, Love

3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)

Sometimes you come across something that captures everything you want to say so brilliantly that it literally takes your breath away, and makes you weep in gratitude.

Sallie Tisdale’s article Out of time: the un-becoming of self, in the March 2018 issue of Harper’s Magazine, is one of those somethings. It says in five pages what I have tried to articulate in the more than 600 pages on this blog, in workshops, webinars, conversations and comments, with mixed success as best. Yet Tisdale does it beautifully, succinctly and poetically.

Here are three important excerpts from her compelling piece:

“The stark fact is that dementia is incurable, progressive, and fatal, but here is the surprise: in the company of [people who live with dementia], one finds peace and unquestioned love in at least as much measure as in the rest of the world. I watch my clients navigate each day’s puzzling details. I know their efforts may look to many observers like an embarrassment of loss. I see the riches: the brave, vulnerable, completely human work of figuring things out. People with dementia sometimes have a rare entrancement with their surroundings, a simplicity of perception, a sense of wonder. Being with a person who has dementia is not that different from being with a person who doesn’t share your language. It is a little like talking to someone who has lost her tongue and cannot speak, has lost his hands and cannot write. This is not a bad thing; it is just a different thing. It requires a different kind of attention.”


“The fact that my own me-ness persists is obvious, and yet a persistence of identity is one of the last things we expect with [people who live with dementia]. They seem different to us; mustn’t they be different to themselves? The spate of recent research considering how a person with dementia actually feels tells us no, not really. People know they have a memory impairment, but they feel themselves to be the same person, even in late stages of the disease: “I’m like a slow-motion version of my old self,” says someone with dementia. The possibility of pleasure, let alone contentment, for this person is barely acknowledged. A team of researchers called our current vision of dementia the tragedy discourse. Another group notes that most researchers have shown “a stark disinterest in happiness,” and their assumption of distress is because that is “the only available lexicon for experience, the only available lens through which dementia is viewed.” Surveys have found that Alzheimer’s disease, the most common form of dementia, and cancer are the diseases that people fear the most. The communal response to dementia seems to invite only existential despair.”


“Yet people with Alzheimer’s consistently rate their quality of life higher than their family members do. In a large international study, people with cognitive impairments were no less happy than healthy people. When family members are upset about a relative’s decline, certain it is a terrible experience, they are not always clear on who is suffering. My friend Kate’s mother had Alzheimer’s. She had always worn careful makeup, and she was uncomfortable leaving the house without it. But her makeup became exaggerated, almost clownish, and she refused Kate’s help. Looking in the mirror, she liked what she saw. Going out to a restaurant became, for Kate, “an exercise in my own discomfort, being willing to let her be as she was.”

The full article is here. I strongly encourage you to read it.

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Advocacy, Life & Living, Toward better care

15 examples of neglect & abuse that would have been captured on cctv in winifred’s care homes

In this second of two guest blog posts, soprano, performer, recording artist and soon-to-be author Joy Dey shares her experience of dementia care in the UK, where her mum Winnifred was neglected in three separate care homes. The first post is here.


My mum Winifred was neglected in three separate care homes between 2013 and 2018. She was evicted from the last of the three, which turned out to be a blessing in disguise as she now resides in a wonderful home where the management and staff really do care, and where the practices and systems reflect that.

My experience with mum has convinced me that we need CCTV cameras in the common areas of care homes throughout the UK, and I fully support Jayne Connery’s Care Campaign for the Vulnerable. Jayne has worked tirelessly to create awareness of the difficulties many of us face in getting good care for our nearest and dearest. Her quest for CCTV to be installed in all communal areas of care homes  in the UK can only bring more comfort for relatives and transparency for care homes.

For example, if CCTV cameras had been installed in the communal areas of Holly Lodge, the place from which my mother was evicted, they would have captured this kind of neglect:

  1. Poor quality food served to residents in their seats (and not in the dining room)
  2. Fluctuating meal times, particularly at ‘tea time’.   This could take place any time between 3.15 and 5.30 or later
  3. Lack of (or no) staff on the floor
  4. Residents prepared for bed anytime after 3 pm
  5. Lack of/late toileting; residents calling to be taken to the toilet and waiting; residents regularly asking relatives “can you ‘elp me” … as no staff on the floor
  6. Residents being left in wheelchairs and not transferred to chairs;
  7. Little/no stimulation
  8. Shouting at residents
  9. Drugs trolley being left open and no one on floor
  10. Mum (and other residents) in the stair lift, in various states of confusion and distress
  11. Mum (and others) going ‘missing’
  12. Unnecessary falls
  13. Not being taken outside
  14. Not being taken to the dining room
  15. Due to lack of updated training and lack of staff, wheelchairs used instead of maintaining mobility – leading to premature bed bound residents

I feel that by addressing these kinds of issues, care will be improved and people who live with dementia will do so with dignity until the very end.

Joy Dey is a soprano singer, performer and recording artist, living in South East Kent, United Kingdom. She is currently working on several books, one of which will likely eventually contain a version of this piece. At the time of posting (August 2018), Joy’s Mum, Winifred, lived in a care home, where Joy visited her almost daily. Winifred was diagnosed with Alzheimer’s in 2008

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Image copyright: giggsy25 / 123RF Stock Photo