long-term care facilities – My Alzheimer's Story

Advocacy, Life & Living, Toward better care

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

April 16, 2020April 23, 2020 amazingsusan

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.

We have seen the rampant neglect and abuse in LTCFs worldwide, and some of us have been advocating for change for decades. I have been writing this blog for six years, and have documented my own mother’s neglect and abuse including finding her in soiled incontinence briefs (about which I wrote an open letter to Quebec’s then minister of health Gaetan Barrette), being sedated into a comatose state for close to four years, being physically restrained, and more.

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. Research shows 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.

Meanwhile, those responsible point fingers at each other to avoid “holding the bag” as in the case of the Herron “home” in Quebec, Canada.

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.

Many people don’t understand the realities of aging and aged care. Some of the erroneous beliefs include: it doesn’t matter how we treat old people; they don’t know what’s happening; they’re going to die soon anyway; and they are expendable. For example, one member of parliament is said to have implied that since old people in nursing homes are the primary victims of COVID-19, that we should go ahead and re-start the economy.

2 ) Lack of awareness

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!

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

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

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

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Image copyright: warrengoldswain / 123RF Stock Photo

Advocacy, Challenges & Solutions, Inspiration, Toward better care

australian care worker wendy carr proves you can teach an old nurse new tricks

November 2, 2019November 4, 2019 amazingsusan

Sometimes I lose hope that dementia care will ever change. It often feels as if we’re going backward instead of forward. Then someone such as Wendy Carr inspires me and renews my hope.

When Wendy began commenting on the My Alzheimer’s Story’s Facebook page in 2018, I was struck by her practical wisdom (see one of her quotes below). It was clear from her comments that she worked in a long-term care facility, and that she was keen to create change. I wanted to know more about her, because we need people like Wendy “on the ground,” changing the system and making a difference in the lives of people who live with dementia in care facilities right now.

I connected with Wendy, and asked her to tell me more about herself; here’s what she wrote:

“I was a Registered Nurse (RN), with experience in Theatre, Ophthalmology, Aged Care and Psychiatry. I left work to care for my sister, then my mum, and then, sadly, my husband. They all wanted to die at home, not in a hospital or palliative care setting. We were able to do this with a huge amount of assistance from Little Haven, a not-for-profit we have in my area. It was a privilege for me to care for my family members at home until they died, although it was emotionally very difficult – much more so for me than if they had been in a hospital or care home. For people to die at home is almost taboo here in Australia, so those who wish to go that route have little support. My Welsh background views death differently I think.

‪Because I was out of paid nursing for so long while caring for my family members, I would have had to retake full training to become registered again. Financially, with three children, that was impossible. So I returned to Aged Care as a Nursing Assistant, and was offered a position in the dementia unit. It is brilliant work, albeit at poor wages. One of the things I most appreciate about being a nursing assistant is that it’s the best place to initiate change. I also love the fact that I work so closely with the residents rather than attending to RN duties that often preclude the building of the vitally important relationships with the people we care for. I could return to university now, but I’m having way too much fun in this assistant role.

I work in a large one-hundred-and-sixty bed, purpose-built facility, which is amazing for a small country town in Queensland, Australia. The facility is set in a beautiful bush environment, and is transitioning from a task-oriented to a person-centred care model. Moving to understand the person’s reality is a hard concept for some carers to grasp. Many still believe any and all behaviours are caused by “the dementia” and cannot be altered or understood, so meds or restraints are still “go to” options when staff members are challenged by the behaviour of some residents. Australia has new laws to address the use of chemical and physical restraints in aged care, which is going to be a huge breakthrough. That said, it’s relatively easy to find loop holes. As with most laws, time will tell. I must admit I am impatient with the slow pace of change.

‪I have worked at this centre for seven years. It is a not-for-profit, and doing an amazing job. I prefer working night shifts. Although there is traditionally less staff at night, it can be the best time to build close relationships with residents. Nighttime “behaviours” require a complete reset of our own headspace!

‪In short, person-centred care (or wholistic nursing as I call it), is finally making inroads, and practices are starting to change. I’m old, but I’m so glad this shift is happening because my desire to provide this kind of care is one of the reasons I became a nurse forty years ago.

Your page is so helpful in redefining attitudes especially as you had first-hand experience caring for your mother. You have helped me to realise I’m not completely mad in thinking we can do this better. Together, we can create a more positive experience for people who live with dementia, care workers and family care partners.”

We need more advocates such as Wendy Carr and Joanna LaFleur in dementia care to create new care models from the ground up! Thanks Wendy and Joanna for helping to change the face of dementia care worldwide.

7 ways to improve dementia care in less than three minutes

7 paths to better dementia care

20 paths to dementia care homes away from home

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Advocacy, Antipsychotic drugs, Toward better care

brilliant lol take on old folk tune strikes powerful paradigm-shifting chord

June 26, 2019June 26, 2019 amazingsusan

Wow! Bravo to gerontologist, author, and dementia care advocate Dr. Al Power who teamed up with Heather Luth, Dementia Program Coordinator at Schlegel Villages, to produce this superb parody of how the behaviour of people with dementia is mislabelled by those who subscribe to the damaging artificial construct of so-called Behavioural and Psychological Symptoms of Dementia (BPSD).

I’ve provided lots of my own research and evidence proving without a doubt that the artificial construct of BPSD is misleading, counterproductive and just plain wrong. Now, Al and Heather illustrate it simply, humourously, and powerfully with a two-minute tune and a dozen flashcards they put together for Dementia Alliance International’s participation in the 2019 World Rocks Against Dementia event.

Enjoy!

take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

7 problems with BPSD

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

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Advocacy, Antipsychotic drugs, Toward better care

like one flew over the cuckoo’s nest

June 7, 2019May 10, 2020 amazingsusan

I should have known better than to invite my photographer friend Edith to do a day-in-the-life photoshoot of Mom and I on a Friday.

I had intended for Edith to capture in images the wonderful time Mom had when I brought her to my place for lunch or dinner. I wanted to show how well she was able to function, how she helped me make lunch, how close we were, how capable she was, and how much we enjoyed spending time together.

But Friday was bath day. That meant Mom was more likely to be even more drugged than usual. Why? Because she “resisted” being undressed and put in the noisy whirlpool bath with a sling-like lift that must have frightened her. Sometimes she resisted “violently,” just as 98 per cent of “normal” people would under similar circumstances (per my Short Survey on Behaviour).
Adding fuel to the fire was Betsy,* the nurse who gave the baths; she was as mean as a junkyard dog. I don’t recall ever seeing her smile during my four years of daily visits to Mom’s dementia jail. On several occasions, she mocked Mom right in front of me; in one instance making fun of the fact that Mom had to pull herself along with her feet in the wheelchair to which she eventually became confined. Mom wasn’t the only resident I witnessed being subjected to Betsy’s abuse, and one of the care workers confided in me that she would sooner send her mother to hell than place her in a home that Betsy worked in.

Betsy was close to six feet tall, and solid. Real solid. They called her “the sergeant major.” Mom, on the other hand, was five foot two, osteoporosis having shrunk her a couple of inches in the previous decade. She was in her mid-eighties, living with dementia, and sedated with antipsychotic drugs because some of the staff–the ones who failed to engage her in ways that worked for her–found her challenging.

Mom’s bath time aggression was carefully recorded in the nurses’ notes I got copies of when I launched a legal bid to get control of her care in August 2013.

On April 12, 2013, for example, Betsy wrote:

Then a week later:

Hmmmm. So it wasn’t okay for Mom to call out for help when she felt threatened, and under attack, but it was perfectly fine for Betsy to do so?

I know Mom’s reactions could have been prevented with the right approach; I know it with one hundred per cent certainty. But Betsy either didn’t know the right approach, didn’t have time to use it or didn’t want to use it. Caroline or I helped Mom shower every morning for more than a year, and Mom never hit, slapped, kicked or pinched either of us. Ever. Sometimes she was slightly reluctant, saying she didn’t need a shower (for example), but we always managed to convince her, and the process always unfolded without incident. In fact, mostly it was a pleasant experience for her and for us. But Betsy didn’t use the right approach, and everything went pear shaped as a result.

Of course Mom and dementia were blamed for the “bad bath time behaviour,” and when things got really out of control, they gave her an extra dose of whatever to subdue her. That’s why and how she ended up like this on that failed photoshoot Friday in 2014:

This video of my catatonic mom haunts me. I can’t imagine anyone watching it without being shocked, even horrified. It reminds me of the final scenes of One Flew Over the Cuckoo’s Nest in which Jack Nicholson’s “troublemaker” character Randle McMurphy is made vegetative after being lobotomized. I remember crying when, out of love and compassion, McMurphy’s big native friend (Chief) kills him by smothering him with a pillow. I never dreamed I would one day see the same vacant look in my mother’s eyes.

We don’t lobotomize people anymore–for good reason. As one writer puts it:

“It was a barbarous procedure with catastrophic consequences, and yet it was once widely accepted and even earned a Portuguese doctor a Nobel Prize. In the annals of medical history, it stands out as one of medicine’s biggest mistakes and an example of how disastrously things can go wrong when a treatment is put into widespread use before it has been adequately tested.”

Maybe one day we will also stop giving antipsychotic drugs to people living with dementia for the same undeniable reasons, and they won’t be tortured and abused like my mother was for the last four years of her life.

#BanBPSD

*not her real name

7 reasons i post “ugly” pictures of my amazing mom on social media

drugs, not dementia, robbed me of my mom and her of her mind

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

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

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Advocacy, Antipsychotic drugs, Toward better care

drugged & drooling

June 2, 2019June 2, 2019 amazingsusan

Many of the comments people make on my posts, and the stories they send me by email and snail mail break me heart. Some literally bring me to tears. This is one of them – a comment CL made when I posted “an open letter to the dementia community worldwide” on the MAS Facebook page:

“When my father was in the hospital for a stroke, a gentleman used to show up every day. He was an older patient, and he used to tell my dad great stories and jokes from his younger years. My dad thoroughly enjoyed these daily visits.

One day my dad asked me to check on “Robbie” because he hadn’t seen him in a couple of days. So I checked with the nursing staff and they said he was moved to a different ward. So I went to look for him. I found him restrained in a chair, in a zombie daze and drooling. It was heartbreaking!

When I questioned the nurses, they said someone complained about him walking around talking to other patients, so they did this horrifying drugging and restraining!. I cried. Then I told my dad he had died. I couldn’t tell him the truth. It was awful!.

P.S. Robbie never hurt or touched anyone. He just stood at the bottom of the bed and talked. Still haunts me to this day. Five years now.”

The very same thing happened to my gregarious and fun-loving mom: she was physically and chemically restrained for being friendly and sociable. Just the thought of it still makes me cry. Imagine the state of poor “Robbie,” who had brought others joy with his “wandering,” if his friend’s daughter felt it was better to tell her father Robbie was dead rather than tell him the truth of what had happened. Better to say he was dead. Think about that.

I believe it’s a crime to do this to vulnerable people, and in particular to vulnerable elderly. We must stop it. And we must #BanBPSD.

drugs, not dementia, robbed me of my mom and her of her mind

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

safety pins & call bells

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Challenges & Solutions, Life & Living, Toward better care

20 actions to foster and maintain dignity in dementia care homes

May 30, 2019May 30, 2019 amazingsusan

I was thrilled to learn that Australian dementia care advocate, author and activist Kate Swaffer included an excerpt from my “open letter to the dementia care community worldwide” in her statement to the Australian Royal Commission on Aged Care Quality and Safety (read the full statement here).

Kate’s comprehensive and thought-provoking statement comprises a wealth of information including a list of 10 Dignity in Care Principles, which Kate originally published on her blog in 2014.

Inspired by her list, I added ten more items to create twenty actions that long-term care providers and their staff could implement to foster and maintain the dignity of people living with dementia (PLWD) who reside in their facilities.

Maintain zero tolerance of all forms of neglect and abuse
Support people PLWD with the same respect you would want for yourself and/or members of your own family
Treat each person living with dementia as an individual by offering a personalised service
Address PLWD using their preferred name, title or other form of address
Enable PLWD to maintain the maximum possible level of independence, choice, and control
Encourage PLWD to do what they enjoy, whatever it may be, and give them the means to do it
Listen when people express their needs and wants, especially when they uses actions to communicate rather than words
Respect people’s privacy
Provide appropriate, well-designed living environments that are comfortable, easy to navigate and welcoming
Ensure people are able to complain without fear of retribution
Engage with family members and carers as care partners
Assist PLWD to maintain confidence and positive self esteem
Act to alleviate loneliness and isolation
Avoid the use of physical and chemical restraints
Provide interesting, stimulating and appropriate things for PLWD to do
Give PLWD opportunities to contribute and lead meaningful lives
Treat PLWD like people, not like objects, or as if they are “lesser than”
Connect with PLWD as fellow human beings
Focus on what PLWD can do, not on what they can’t
Avoid blaming, shaming and taming!

Preserving dignity is part of respecting human rights. We need to ensure it happens across the board.

20 paths to dementia care homes away from home

7 ways to improve dementia care in less than three minutes

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Advocacy, Toward better care, Videos

people living with dementia prove the medical model wrong

November 29, 2018 amazingsusan

People living with dementia are LIVING. They are not dead, or gone or empty shells.

They are people with abilities, skills, wants, needs, feelings, and if we help them, purpose! It’s time to recognize that, and provide PLWD the support they need – not just in a few exceptional long-term care facilities, but everywhere. We need to ditch the medical model that’s been proven to be broken and replace it with dementia care that works.

Revolutionizing Dementia Care is all about doing that. It’s full of concrete examples of the kinds of things that create positive change.

Here’s the trailer:

More important, here’s the full meal deal (I strongly encourage you to watch it in its entirety):

This is not “pie in the sky,” nor is it rocket science (as I keep saying over and over and over again). Some long-term care facilities are able to provide the kind of care that allows people living with dementia to engage life until the very end. They help PLWD to find purpose, to enjoy life, to contribute to their communities, to love, to laugh and to live fully and meaningful lives.

David Sheard has done it with his Butterfly Model. Dr. Allen Power has done it with his books and pioneering ideas. Occupational therapist Teepa Snow has done with her skills training and videos. Others use similar approaches with the same kind of results. We need to scale these models NOW, if not sooner.

Please speak out and make your voice heard for better dementia care worldwide.

#WeCanCareBetter

https://myalzheimersstory.com/2018/11/18/a-real-life-example-of-what-great-dementia-care-is-loving-engaging-respectful-meaningful-and-joyful-for-everyone-involved/

https://myalzheimersstory.com/2015/10/10/is-your-dementia-glass-half-empty-or-half-full/

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Advocacy, Toward better care, You said it!

a real-life example of what great dementia care is: loving, engaging, respectful, meaningful and joyful for everyone involved

November 18, 2018November 18, 2018 amazingsusan

A real-life interaction at Landermeads care home. Not staged, not stock, not faked.

It can be done, and it is being done right now in various places around the world including in Canada. We can use this life-changing model (and others that produce the same kind of results) to transform our broken eldercare system. EVERYONE benefits. Let’s do it!

Here are some great quotes from the video below to whet your appetite:

1 ) “What great dementia care is about is saying this isn’t rocket science to create, because I believe every human being knows what it is to be human. They know when they’re walking in somewhere: Does it feel right? Does it sound right? But what happens is we get told to be ‘professional,’ we get told to have distance and to be detached. But this constrains us and limits us as human beings in the care sector.” ~ Dr. David Sheard, creator of the Butterfly Model

2 ) “I can’t really think of caring any other way apart from how I’ve learned here. Which is by caring for the family members in a way that suits them more than it suits us.” ~ Alex King, Support Worker, Landermeads

3 ) “We don’t have an activities coordinator because activities aren’t something we’d bolt on at certain times during the day. We call it ‘occupation’ because people need to feel self-worth, they need to feel involved, and included in what we do, and the best way to do that is to occupy them every day with things that are going on as we would if we were at home.” ~ Ros Heath, Co-Founder and Director, Landermeads

4 ) “People who work in traditional care don’t really understand how to interact with people on a level where they’re emotionally attached to them. I think people here get very emotionally attached, and that’s something that brings out the best in the people who live here.” ~ Jay Heath Finance Director, Landermeads

5 ) “If you can make their lives happy, and have a good time, it doesn’t need to be a bad ending where you’re sitting in a corner, and you’re sad and you’re lonely and nobody’s talking to you. We’re about having fun and having a good time right until the end.” ~ Lisa Bishop, Nurse, Landermeads

6 ) “We absolutely live and breathe what we do, we believe in it, [because of] the evidence we have from the people that we look after. It’s just a joy to see how well people can live who have a dementia.” ~ Ros Heath, Co-Founder and Director, Landermeads

7 ) “This is controversial because in a care sector that’s largely driven by business, driven by models that have been taken from the healthcare systems of hospitals, in terms of clinical efficiency or in terms of what four-star hotel care looks like. But we know [from] our own lives that the greatest thing that helps us survive, that gives us a sense of well being is being loved. And I think [it’s] a huge threat to a professional sector to say that’s what transforms lives. That’s what creates staff who want to be [here]. That’s what reduces staff sickness [and] creates staff retention. That’s what stops people falling in the care home, that’s what stops infection rates – people can’t get their head around it. [The] care sector seems so scared to embrace that as the very core, and then build a business on it.” ~ Dr. David Sheard, creator of the Butterfly Model

Take a look at what is at the core of great dementia care (tissues recommended if you’re sensitive like me!):

Curious? Moved? Energized? Hopeful?

Want to know more? Click these links:

https://myalzheimersstory.com/2018/06/24/what-if-everything-weve-been-taught-about-dementia-care-is-a-lie/

https://myalzheimersstory.com/2018/05/24/5-ways-to-make-toast-in-long-term-dementia-care/

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Advocacy, Life & Living, Poetry

a daughter’s rendering and remembering

November 16, 2018November 17, 2018 amazingsusan

November 16, 2018: I doubt I will ever get over the deep grief I feel each November 16, the day my mother was relocated to #DementiaJail in 2012. All I can do is try to process it in whatever way I can. This year, once again, it’s with poetry.

the rendering

nothing more
could be done
all fault lay with
the setting sun

whose will it was
to force imprison
the one from whom
we’d both arisen

a deal had been struck
the year before
when no one knew
what lay in store

then came time
to pay the piper
fate took aim
fired like a sniper

shot her, then me
but not to death
left us bleeding
drained of breath

we struggled hard
for four more years
held hands amidst
the joys and tears

until the day that
she surrendered
with untold truth
for me to render

now i fight on
to right the wrong
of stolen voices
and silent songs

November 16, 2017:

when you’re put behind bars

November 16, 2016:

the day our best wasn’t good enough

November 16, 2015:

joys and tears throughout the years

November 16, 2012:

moving day

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Advocacy, Real life, Toward better care, Videos

500+ reasons we need to do something about widespread neglect and abuse in long-term care in canada (and around the world)

November 5, 2018November 20, 2018 amazingsusan

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.

Reason #1
The number one reason for me is my mom. She was neglected in various ways, and abused by being administered antipsychotic drugs she didn’t need or want during the four years she spent in a Quebec nursing home. The neglect and abuse culminated in her death in August 2016.

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.

Joy Dey’s mom Winnifred was neglected in three separate facilities before Dey found a good one.

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

https://myalzheimersstory.com/2018/07/15/19-ltc-human-rights-abuses-i-hope-quebec-will-have-to-pay-for/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2016/10/04/25-practices-long-term-care-workers-know-are-elder-neglect-and-abuse/