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 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.
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:
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.
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.
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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Emily Gagnon is a hospice nurse. She lives in Waterdown, Ontario. Her Facebook post to mark the end of National Nurses’ Week 2020 brought me to tears:
“As we wrap up National Nurses Week 2020, I’d like to share a little bit about what I do as a hospice nurse. For those of you who are not familiar, hospice is a facility where people come to live out the remainder of their days. Many of the residents that I care for have a terminal and/or life limiting illness with limited time left to live.
What I love most about hospice is watching the residents and their families surrender all of the burden they carry and make the best of the time that they have left. In my three years of practice, I’ve witnessed miracles, tragedies, beauty, pain and everything in between. Residents and their families put all of their trust in us to ensure their wishes are fulfilled and their dignity is maintained.
I am honoured to care for, help and serve the residents that come to our hospice. End of life care is my biggest passion, one that I hold so close to my heart.
I will sit with you and hold your hand.
I will brush the hair from your brow.
I will do my best to explain why this is happening.
I will tell you that it’s going to be alright.
I will comfort your family as you transition.
I will tell you when there are weeks and not months, days and not weeks, hours and not days.
I will be there for you till the very end and beyond, this is my promise.
Thank you Emily and your fellow hospice nurses. Thank you nurses everywhere.
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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.
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.
Palliative care physician Dr. Mike Harlos gives advice to other palliative care doctors and nurses on how to best support people who are dying, as well as their family members and friends who may be going through the process with them. I love Dr. Harlos’s wisdom and gentle manner, which I have also featured here, and here I wish I had known of these videos before I sat by my mother’s side as she took her final breaths.
According to Dr. Harlos, there are three important things people should remember if they can’t be with a loved when he or she is dying:
Not being in the room at the time of death does not mean you are absent at the time of death
You are connected in spirit and in soul to the people you love
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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?”
“No.”
“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.”
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.
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.
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I’m compiling evidence (I’ve got LOTS of it!) to include in letters of complaint to the College of Physicians of Quebec and the Order of Nurses of Quebec regarding the “care” my mother received while in a dementia jail from 2012 to 2016.
One of the environmental aspects that contributed to Mom’s anxiety and agitation was the volume and nature of the noise around her. For the first eighteen months she was there, Mom was forced to sit in an armchair beside a busy elevator and across from the facility’s call bell panel. The panel buzzed constantly and loudly. I found it extremely annoying; so did Mom. But was it just us? I decided to solicit other opinions with a mini survey.
I invited online friends and fans to listen to a 20-second audio clip:
Then I asked them to answer three questions. When I had more than sixty responses, I did an analysis. I wasn’t surprised by the results.
Question 1:
None of the respondents found the sound calming. Only three found it neutral. The large majority (83%) found the sound annoying, and nine respondents (i.e. 13% of all respondents) found it beyond annoying (for a total of 96% saying it was unpleasant in some way); those who answered “other” described it like this:
Oh my shattered nerves, horrible……I just wanted it to stop!!!
anxiety-provoking as it endures. it is indicating something is wrong, yet I don’t know what is wrong and I also can’t fix the problem
Stressful
Irritating
Distressing
so scary… a violent aggression to my ears, to my body, to my heart, to my soul! Panic… a sense of being trapped… attacked with no way out! Thank god for the sound of your soothing voice
most uncomfortable – didn’t like it at all
Almost painful
It hurts. I can’t think straight. It distracts and annoys me. I’m looking for ways to stop it.
Question 2:
Question 3:
The third and last “question” asked respondents to comment. When I did the analysis, Question 3 had generated 33 responses from a total of 68 respondents (i.e. 48% of all respondents left comments). Twenty of those who commented (i.e. 29% of all respondents and 61% of those who commented) expanded on the annoyance factor:
I have six five-year-olds in my care. I enjoy getting them rowdy, busy and boisterous. This background sound is detrimental to me and anyone who can hear it. I played it to my band of five-year-olds through a speaker. They clapped their hands over their ears. One told me to “make it shut up!”
I work at a specialized Dementia facility and this would freak out my residents
I don’t have alzheimer’s but I do have epilepsy and sounds like that really bother me especially high pitched ones.
Chaotic feel
Noise was painful
Those sounds make my brain crazy
No-one should have to put with that racket!
Get me out of there… fast.
I think this sound would be really annoying to a person with Alzheimer’s
I’m a carer and, if I didn’t like it, I’m sure my husband who has AD wouldn’t either.
I have extremely sensitive hearing and noises like this jangle my nerves.
that sound left me very unsettled…
hurts my head!
The sound is annoying, high pitched and likely induces anxiety in someone with dementia. A softer bell or other ringtone or even music could be a much better alternative.
Very annoying sound
Seems sound would cause severe stress over time.
Incredibly irritating sound, would make me furious if I was subjected to it for a long time.
I hated the noise – it set my teeth on edge & I wanted it to stop immediately.
curious when we get more info on the project, can’t imagine anyone would find it calming unless it reminds them of home (reminded me of a hotel I stayed in Lima)
Brought on anxiety
I received these additional comments on Facebook:
OMG, that was a very stressful 20 seconds!
I cant listen beyond 5 seconds. I can’t think. It eats into my brain. I want to make it stop. I put it through my speaker, I normally have music blasting through..it was hell. It hurts. I want it to stop.
Unnecessary, annoying in a sense heightening manner, with my being on spectrum may affect me differently, but it was just shy of neurological torture in that short span alone.
And one friend quipped that it wouldn’t be long before he’d take a sledge hammer to the sound panel.
If people who DON’T live with dementia find something in the environment annoying and agitating, what might it be like for those who DO live with dementia? It’s really not that hard to figure out what environmental factors might be distressing to someone who lives with demential. All you have to do is ask yourself what you find irritating and/or distressing, and put yourselves in their shoes.
The oh-so-irritating call bell alarm panel sound was eventually changed to something more like a “ping,” but only after Mom had been there for about eighteen months. And that wasn’t the only anxiety producing noise she had to endure. She had always hated loud sounds. It must have been unrelenting torture for her to be imprisoned in such a noise-filled environment. No wonder she was “agitated.”