It’s one thing to see someone when they are sedated. It’s quite another to see the sedation taking effect, and the person who doesn’t wish to be sedated trying to fight it off.
Against my wishes and against her will, my mom was sedated with quetiapine at breakfast every day for almost four years. The dose she was given knocked her out cold for several hours. She got another debilitating dose in the evening. They also gave her risperidone twice each day. This drug regimen was an abuse of her human rights.
I had incontrovertible proof that non-pharmacological strategies improved the quality of Mom’s life, and, should they have been fully implemented would have eliminated the “need” to inappropriately sedate her with quetiapine and risperidone. I repeatedly voiced my concerns and shared my evidence. I was ignored, and branded a troublemaker.
It took 45 minutes to an hour for the quetiapine to take full effect. Sometimes, during that window, I would pick Mom up at her Dementia Jail and take her to my house so that when she woke up three or four hours later, we could spend some quality time together.
This is what Mom’s experience looked like during the last five minutes or so before she fell “asleep:”
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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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.
The tragedy that is being played out in long-term care facilities (LTCFs) across Canada and around the world as a result of the COVID-19 pandemic comes as no surprise to elder care advocates such as myself.
Elder care advocates are not alone in knowing about the dire situation in LTC around the world. Care workers know about it, nursing home managers and administrators know about it, and some family members of the neglected and abused know about it too. Elder neglect and abuse in LTCFs have been pervasive for years, and that’s why we’re seeing so many deaths in LTCFs during this pandemic.
Don’t be fooled by what the politicians and government officials are saying now. They would want you to believe that this crisis situation is the result of COVID-19. It’s not. It’s the result of the systemic failure that has been ongoing for a very long time. In Canada, it’s also the result of healthcare officials and politicians not listening to advocates’ warnings about what would happen when COVID-19 reached our country.
Because of the pandemic and the disproportionate toll it’s taking on people living in so-called “care” facilities, the general public is learning the truth: the system sucks.
What everyone also needs to know is the system sucked long before COVID-19 came calling. Here’s what advocates says about the situation in Quebec (the situation is similar across Canada, the US and the UK):
Elder care advocates worldwide have long been fighting for person-centred care that engages people and helps them to live rich and full lives until the end. Researchshows this type of care is essential to the well being of older people, particularly those living with dementia. Treating our elders in any other way is criminal, as we are now seeing clearly as they die in their thousands worldwide from COVID-19.
Here are some of the factors that allow institutional neglect and abuse to continue:
1 ) Ageism & stigma
Ageist views remain widespread (e.g. old people are useless; their lives don’t matter; our job is to warehouse them, not engage them with life). These unhappy myths negatively impact the way we care for elderly people who live in their own homes, in our communities and most particularly in LTCFs.
For the most part, the general public simply does not understand the generally poor conditions that exist in long-term care facilities. Even people who have a family members living in LTCF may not fully understand the conditions under which residents live because they believe what they are told by care workers, administrators and the government. I know from having visited my mother every day for four years that things are rarely what they appear to be. It’s true that some facilities provide good care, but my sense from ongoing research is that they are the exception rather than the rule.
3 ) Poor leadership
Senior executives and medical professionals who manage LTCFs, as well as government policy makers who are responsible in large part for most of the factors that follow and for the neglect and abuse that result. Being willing to take a hard look at what has been wrong and what is wrong with failing eldercare systems takes courage. Identifying shortcomings and fixing them is a gargantuan task that requires vision, will, energy and commitment. If those kinds of people had been in leadership positions before and were in leadership positions now, we wouldn’t find ourselves with the existing situation: broken facilities full of infected workers and dying residents.
4 ) Lack of training/understanding
The standard of care in any given facility is only as good as the frontline workers who deliver it. Care workers require specialized training and understanding; if they don’t have the skills they need, neglect and abuse are inevitable. Frontline care staff need the encouragement and support of competent, compassionate, visionary leaders to get the job done.
5 ) Low staff-to-resident ratios
How can one care worker attend to the needs of eight to ten or even more residents and do it to a reasonable standard? It’s not possible. And yet, those are the kinds of care worker to resident ratios that prevail in most LTCFs. It’s no wonder neglect and abuse are pervasive. The situation has reached a crisis level with the COVID-19 pandemic.
6 ) Warehouse-like environments
There have been recent innovations in design including dementia villages, small group homes, and facilities in which childcare and eldercare are combined. While these approaches have proven successful, organizations that apply them are still relatively few and far between. Most facilities are not designed to meet resident needs, but rather to maximize operational efficiency. Calling a warehouse a “village,” a “manor,” or a “specialized memory care unit,” does not change the essence of what it is.
7 ) Dis-incentivized workers
Care workers tend to be poorly trained and poorly paid, and overworked because of low staff-to-resident ratios; they are often ill treated, and unappreciated. Many are given part-time work at any given facility, and must therefore work at several facilities to make ends meet, a fact that has contributed to the rapid spread of outbreaks in nursing homes across Canada.
8 ) Uncaring cultures
All of the factors above lead to UNcare cultures in which profit comes first, people come last and the status quo is never questioned, or, if and when it is, complainers and whistleblowers are quickly silenced, dismissed, or disavowed. Staff become demoralized, complacent, cynical and hardened to preserve their own sanity. Negative UNcare cultures that have become entrenched are hard to change.
9 ) Ineffective “policing”
Regulatory bodies may be stretched beyond capacity. Substandard operations/practices may be difficult to identify because of the way inspections are done (e.g. prior notice of visits results in things being “spit and polish” for inspecting eyes), and offending institutions may remain open and operating despite substandard performance and long lists of regulation breaches and/or regulatory infractions.
10 ) The bottom line
Cost-saving, cost-cutting, and the pursuit of profit are deemed more important than providing vulnerable elders with the care they need and deserve. Residents and families are powerless to change the system to which they have fallen victim.
It’s time to take a closer look at this tragic and completely unacceptable state of affairs, demand research into the nature and prevalence of neglect and abuse in long-term care, and most important, to immediately implement action plans to stop it. Class action suits such as these are a step in the right direction.
Perhaps this pandemic will finally open people’s eyes to the horrors of long-term “care” in Canada and around the world. But oh what a heavy price to pay for the potential of change!
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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.
Actually, there are probably thousands of reasons, or maybe even tens of thousands, but there are at least five hundred that I know of — each representing someone who once was, and perhaps still is, a living, breathing human being who was denied or is being denied his or her rights.
I advocated tirelessly for better care for her during her four years, and, as a result was vilified, ridiculed, disbelieved, slandered, and punished – just as many other dementia and care advocates are. Now, hopefully, the tides are changing. Family members and people in so-called “care” are joining together and saying enough is enough.
Reason #2 Lori Dekervor’s dad Arthur Ross; he died in excruciating pain because workers at the long-term care facility where he resided failed to provide the care he needed after a fall. Like many cases of elder abuse, this one may have gone unnoticed had daughter Lori not found (almost by accident) a stinking, gaping, infected hole at the base of her father’s spine.
The literally hundreds of other reasons comprise the cases of abuse and neglect that have caused suffering and death in long-term care in the past several years alone.
Here are a handful from the scores of examples worldwide:
Francis Yorke found cockroaches in her mother Margaret’s room – even in her bed. Just as I did, she frequently found her mom in wet or soiled incontinence briefs when she arrived for a visit. Margaret eventually died of a UTI. See more in the W5 video below.
Betty McTay’s mom, Edna, who was living in a long-term care facility, died of starvation.“ I think it’s criminal that these places are getting away with this,” McTay tells Sandie Rinaldo in the W5 video below.
Judy Berry’s mom Evelyn Holly was kicked out of twelve “care” facilities in seven years. Berry was so angered that, after her mom died, she opened her own care home, which she ran for sixteen years before becoming a dementia care consultant.
Salim Younes noticed bruises and cuts to his father’s head and legs, as well as significant weight loss; his complaints fell on deaf ears. So he installed a video camera in his father’s room. See what he discovered here.
Family member advocates in Quebec and Ontario have joined together in two separate legal actions to hold long-term care facilities accountable. I am part of one in Quebec, which currently has more than 300 complainants; and Lori is the driving force behind another in Ontario, which currently has more than 200 complainants. The latter is being covered by CTV’s W5 in shocking investigative reports such as the one below, which includes confirmation from a care worker (others have also spoken out in Ontario) of the deplorable practices that may be found in many facilities:
The surprising part about Dekervor, and the more than two hundred families who have joined her to mount a case against LTC giants Revera, Extendicare and Sienna, is that she and they have come forward. I believe elder abuse is pervasive in Canadian long-term care. The problem is, it’s also hidden, and thus hard to fight. Whistleblowers are few and far between and family members often either don’t recognize abuse if they see it or fear reprisals or even worse care if they rock the boat. Those who do complain have a hard time being heard and making their stories stick because facilities and their “experts” hold all the cards. Think David and Goliath without the happy ending.
Fingers crossed things are changing… #FightTheGoodFight
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Harry, who is an administrator on the Forget Me Not page, posts there frequently, and sometimes shares those posts on his personal page. This particular post really resonated with me:
“Are we missing the point concerning raising dementia awareness? Are we so focused on finding a cure for Alzheimer’s that we are forgetting about the people living other forms of dementia? Today Hazel and I volunteered at the Alzheimer’s Associations Walk to End Alzheimer’s and had a wonderful time, but something was missing.
I listened to the speakers and heard the statistics and how horrible this disease is. What I didn’t walk away with, was the feeling of Hope. It was nice to hear how much money sponsors contributed and who gave the most, but is that how we are going to end Alzheimer’s?
I know I am being over critical and going to catch Hell from many directions, but the path of dementia I am walking on is comprised of people living with various forms and stages of dementia. Money is not going to get them off that path, only Hope can.
Money is needed to find a cure for future generations and I’m for it, but damn it, don’t people realize that my friends don’t want to hear about the miseries or the statistics, they want to hear how they can live with their disease today.
Why is it so hard to speak about Hope and how we are spending money toward finding ways to live a better life? When we talk about finding a cure, why can’t we also want to find a cure for Vascular Dementia, Lewy Body Dementia, Frontotemporal Dementia and all the other forms.
My biggest question is, why do we need to sell the miseries of our disease to raise funds. Maybe if people saw the Hope and progress the grass roots are making into how people think about dementia, they would give more.”
Several people who also live with dementia made these comments on Harry’s post:
“The negative narrative feeds fear and dread and disables people upon diagnosis. When we speak out our diagnosis are questioned because of the negative perceptions of professionals who should know better. Other diseases are portrayed in a more positive light, breeding enablement and hope, why can that not be the narrative around Dementia.” ~ HG
“This is precisely the problem. Perpetuating the tragedy stereotype is what They use to raise money. Dispelling myths and demonstrating we’re still human with equal human rights is what We do to raise hopes. Someone needs to get Our truth to the masses.” ~ Mary Radnofsky
“Very well said! I have often felt that some of the big associations care much more about the money than they do about people living with the disease.” ~ SW
Like Harry and I, others in the worldwide dementia care advocacy network are asking pertinent and powerful questions such as: why do we need to sell misery and our souls to get funding for dementia care?
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The bulge at the front of Mom’s pants drove me nuts.
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.”
My Alzheimer's Story 