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)

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/

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Advocacy, Toward better care

families turned fighters take on ltc goliath revera for elder abuse

Arthur Ross Jones 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 Dekervor not found (almost by accident) a stinking, gaping, infected hole at the base of her father’s spine. Justifiably enraged by the discovery, Dekervor took her case to the provincial ombudsmen, and tried for justice via multiple official channels. Then, dissatisfied with the results, she decided to take legal action in the hope that bringing her father’s story to light might help others avoid the same fate.

I was deeply saddened when Lori told me what happened to her dad, but I wasn’t shocked. Nor was I shocked to hear the stories of others who had similar experiences with long-term care giant Revera, which, coincidentally, include Sue T., the friend of a friend whose elderly parents lived in a facility run by Revera. More about Sue’s story in coming weeks.

The surprising part about Dekervor, and the ninety or so families who have joined her to mount a class action suit against Revera, 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.

Watch Dekervor’s class action story here on W5.

3 more 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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Advocacy, Challenges & Solutions, Toward better care

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

silence-cropped-logo

“…too many people are frightened to raise concerns because they think [their visits will be restricted or they will be forced to relocate their loved ones].”  The United Kingdom’s Care Quality Commission

The last “silencer” listed in this second of two posts is the saddest, and probably the major reason the abuse and neglect of elderly people who live with dementia in long-term care facilities are largely unreported and thus ongoing. (The first post is here.)

1) “Blindness”

Some people see and recognize the abuse and neglect of an institutionalized relative or friend, but they choose to say nothing: they turn a blind eye. Maybe they don’t care, maybe they don’t want to make waves, maybe they don’t know what to do or say to change the situation, maybe they are passive, maybe they fear conflict, maybe they feel it’s not their place, or…?

2) Fear

People who recognize abuse and neglect for what they are may choose not to speak out because they are afraid of the repercussions the most frightening of which is that if they complain, their loved one will get even worse treatment. A friend told me the heartbreaking story of her mother, who was bedridden and dying and was being ill treated in a nursing home. Her mother, she said, had begged her not to complain to the staff about the poor care for fear that complaining would worsen rather than improve her situation. The daughter, who had the same fears as her mother, respected her mother’s wish and said nothing, leaving the secret of her suffering to go with her to her grave.

3) Threats and intimidation

In worst-case scenarios, having a relative in long-term care can be like having them held hostage. All the power lies in the hands of facility staff and management; advocates “complain” at the risk of being prevented from seeing their loved one or of having their loved one “kicked out” of the facility, which creates a whole new set of challenges for caring family members.

Preventing family members from seeing their loved ones is in itself a form of abuse that, sadly, appears not to be uncommon. A November 2016 BBC article headlined “Care homes ban relatives who complain” details some of the scenarios leading to family members being banned from visiting their loved ones. The United Kingdom’s Care Quality Commission responded to the article by publishing information, which says in part:

“Care homes are people’s homes. They, their family and friends should not live in fear of being penalised for raising concerns. Good providers know this and we see plenty of excellent practice where managers and staff respond to complaints positively and make sure it is as easy as possible for people to visit their loved ones in a welcoming, friendly environment.

But we know this is not always everyone’s experience, with reports of visiting restrictions and people being forced to leave against their wishes. We also know that too many people are frightened to raise concerns because they think this is going to happen.”

The best intentions of the Care Quality Commission didn’t help Jenny Moore, the founder of YourVoiceMatters.org.uk. Moore was banned from seeing her mother-in-law for three years after being “a habitual and vexatious complainant” because she voiced concerns about her mother-in-law’s care. Her case, while extreme, is not unique. I had a similar experience. During the almost four years my mother resided in a LTCF, I was repeatedly threatened with being denied the right to see her after I raised various concerns and objected to her being inappropriately medicated with antipsychotic drugs for behavioural expressions which should have been addressed non-pharmacologically. Eighteen months before she died, I was ordered to restrict my daily visits to between 1 and 3 p.m., during which time Mom normally slept. These actions aimed to silence me made me more determined to be a voice for our vulnerable elderly who live with dementia and who are abused and neglected in “care.”

When one of Quebec’s most popular radio talk show hosts, Isabel Marechal, featured the issue on her programme in early 2016, the lines were flooded with people calling in with variations of the same story. It’s no wonder family members either don’t speak up or do so anonymously: advocating for better care may actually make things worse in the short term and/or result in being prevented from seeing loved ones. Nevertheless, we must not be silent. If we don’t speak out, nothing will ever change. It is our moral duty to tell the truth of what we witness.

Likewise, we must find ways to educate and empower LTCF front-line staff and family members with respect to identifying and reporting elder abuse and neglect. Better care depends on it.

More information on elder abuse and neglect at these links:

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Advocacy, Challenges & Solutions, Toward better care

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

blindfold2-cropped

“One in three adults who are in residential care or receiving help at home (in the United Kingdom) fear abuse or physical harm – equivalent to about half a million people.”  From a 2013 United Kingdom National Healthcare Services survey.

Elder abuse and neglect are important issues and I continue to explore them in an ongoing series of posts. Most recently, I looked at why staff in long-term facilities don’t report incidents of elder abuse and neglect.

This post is the first of two looking at why family members and friends fail to report incidents or sometimes even chronic abuse and neglect of loved ones in long-term care.

1) Ignorance

Like many care workers, family members and visitors may not understand what constitutes abuse and neglect. They may not know for example that the use of physical restraints (such as recliners that prevent people from getting up) and chemical restraints (such as the inappropriate use of antipsychotic medications) are considered abuse. They may not know that speaking to elderly people in a way that infantilizes them is abusive, or that leaving them in wet or soiled incontinence briefs is neglect.

2) Absence

Family members might not witness abuse and neglect for several reasons 1) they may visit rarely or not at all for a diverity of reasons and therefore don’t see what goes on, 2) they see a “sanitized” version of how their loved one is treated because things are “different” when people visit and/or 3) they are fed a load of tripe about the condition of their loved one by those who are supposed to be providing care. Here’s one example of the latter from family member A.G.:

“When my dad was in the Alzheimer’s facility in California, I called regularly to see how he was doing; each time I was told the same things: he was fine, all was good. After he died I learned everything the facility had told me was a lie. In actuality, my dad had been kept on drugs for the last year and a half of his life because (they claimed) he was violent, and that most days his bed reeked of urine because they were not proactive on attending to his hygiene. Since I didn’t live in the same state as my parents I had no way of knowing how mistreated he actually was.”

Sometimes abuse or neglect and/or the symptoms of abuse or neglect are not immediately apparent. Unless you take your mother to the toilet when you visit, for example, you may not realize she needs to have her incontinence brief changed. You may be told she is changed or toileted every two or three hours, when in fact it’s once in the morning and once at night. Unless you dress and/or undress him yourself, you may not know your father has bruises on his back, arms, and legs or if he is bedridden, that he has pressure sores. You may not know your wife is woken up at 4 a.m. for breakfast or put to bed at 7 p.m. and given drugs to make her sleep – how would you if your visits are always in the afternoons? Abuse and neglect may be hard to detect because they are often relatively easy to hide, particularly when people have few or no visitors, or family members are at a distance.

In October 2016, a class action suit was launched in Canada against Revera Nursing Homes by Lori DeKervor whose father died in 2014 shortly after she found him in excruciating pain with an infected sacral ulcer at one of the operator’s facilities in Toronto. The suit includes a list of complaints against other faciliities run by the same operator, including one incident in which an elderly woman resident was found with maggots in an open wound. If you know anyone who has had a bad experience in a facility run by Revera, please contact Amani Oakley (maindesk@oakleylegal.com), the lawyer handling the class action.

3) Denial

Some family members retreat in denial. I can imagine and fully understand the mental and emotional gymnastics that go along with that: “I wouldn’t leave Mom in a place where she was being abused or neglected, and since I am leaving her in this place, the care must be good otherwise I would be taking her out of there.” The problem is, taking a loved one out of a facility means having to find a new place with all the headaches that entails. Denial can be a form of self-protection.

In a 2016 survey, Penrose Senior Check-In Services found that while 95 percent of long-term care residents say they have been abused or witnessed the abuse of another resident, a whopping 70 per cent of children of aging parents in long-term care facilities answered “not at all likely” to the question “how likely is it that your parent has been abused?” Meanwhile, 32 percent answered “yes” to the question “has your parent complained being abused?” (See the info graphic below.)

More information on elder abuse and neglect at these links:

 

penrose-elder-abuse-disconnect-graphic

https://myalzheimersstory.com/2016/11/23/3-more-reasons-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

 

Top image copyright: prometeus / 123RF Stock Photo

Advocacy, Challenges & Solutions, Toward better care

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

see-no-evil-crop

“Care homes are understaffed, and the workers do not want to lose their jobs and/or be “black balled.” Mum and I witnessed as new eager workers with lovely dispositions started their employment. They had fresh ideas and wanted to do good for the families and residents and their employer and colleagues. Within literally a week or two, they had either left to try out another institution or had morphed to whatever extent they needed to in order to keep their job. Retaliation was swift and sure, and whistleblowers were not welcomed. It was a work culture of fear…” Daughter of a Canadian long-term care facility resident.

Frontline care workers are best positioned to identify and report neglect and abuse in long-term care facilities (LTCFs); they are the ones most frequently in close contact with residents. If care staff reported neglect and abuse, the issues could be addressed and the widespread mistreatment of elders in care could be reduced. One of the most obvious conundrums is that care workers, besides witnessing abuse and neglect, may also perpetrate it as hidden cameras planted by concerned family members have revealed time and again.

Here are some of the reasons care workers don’t report elder neglect and abuse in LTCFs:

1 ) Ignorance

Some care workers may not know what constitutes abuse. Long-time employees may not realize that previously approved practices are no longer acceptable. Newer employees may not be properly trained, and therefore lack understanding of what neglect and abuse are. In particular, workers may not know that, for example, speaking down to people who live with dementia, overmedicating them instead of meeting unmet needs, not providing them appropriate stimulation and activities, and other common practices are in fact considered abuse. If you can’t identify it, you certainly won’t be reporting it.

This ignorance extends beyond frontline staff; a 2009 systemic research review concluded that health and social care professionals in the United States “consistently underestimated the prevalence of elder abuse.” 

2) Normalization

On the other hand, many care workers clearly do understand what constitutes abuse and neglect. In a 2001 study, care workers identified twenty-five such practices. Normalization might be restated thus: “If everyone else does it, it must be okay,” and if something is “okay” there’s no need to report it. Over time, inappropriate behaviour, flawed procedures and poor practices become the norm, and when no one pauses to re-examine and re-evaluate we have what the military call SNAFU.

Consider these numbers:

A 1987 survey of 577 nursing home staff members from 31 facilities found that more than one-third (36 percent) had witnessed at least one incident of physical abuse during the preceding 12 months (Pillemer and Moore, 1989); and a total of 81 percent of the staff reported that they had observed and 40 percent had committed at least one incident of psychological abuse during the same 12-month period.

Ask yourself what’s wrong with this picture:

In 2000, the Atlanta Long-Term Care Ombudsman conducted a study in which it ninety-five percent of the residents who were interviewed reported that they had experienced neglect or witnessed other residents being neglected. Ninety-five percent!

Revisit this case that spanned thirteen years:

In 1999, a class action lawsuit detailing hundreds of cases of abuse was launched against the St-Charles Borromée hospital in Montreal. But it wasn’t until 2003, when family members of a patient there began secretly recording staff verbally and psychologically abusing their relative, that people began paying attention. The case was finally settled for $8.5 million in 2013.

Since then, little has changed:

In a 2015 report, the Canadian investigative journalism program W5 uncovered “at least 1,500 cases of staff-to-resident abuse and neglect in nursing homes across Canada in 2013. The program suggest the number of cases was likely higher “due to under-reporting of incidents.”

On October 20, 2016, a Canadian lawyer filed a statement of claim that raises 82 examples of neglect and abuse at a large North American eldercare provider.

In November 2017, the Canadian Union of Public Employees (CUPE) in Ontario lobbied hard for legislative changes to LTC regulations. One 19-year veteran care worker said understaffing results in residents being forced into incontinence.

In December 2017, an elderly man living with dementia was drugged to death in a long-term care facility in Quebec after having been there for less than three weeks.

The issues aren’t confined to Canada and the United States. A 2013 United Kingdom National Healthcare Services survey found that “one in three adults who are in residential care or receiving help at home fear abuse or physical harm – equivalent to about half a million people.”  

3 ) Fear

Most people know that whistleblowers tend to be punished, not praised. Those workers who understand and witness neglect and abuse may not report it for fear of being censured, vilified, blamed, shunned by their co-workers or even of losing their jobs. They may be threatened and/or intimidated by supervisors, managers, administrators and/or facility owners who wish to maintain the status quo for various reasons including convenience or keeping costs down, or who simply don’t know what to do about it.

One former care worker shared this with me:

“As a former employee of long term care facilities my experience tells me there is a lack of education about elderly abuse within the health care facilities. I have reported abuse and lost my job – twice. It’s difficult to remain quiet…when you see something…say something!”

A novel three-year project to introduce an elder abuse policy in a long-term care facility in Quebec identified staff reluctance to report on their colleagues (who wants to snitch on someone they have to work with the next day?), and perceived lack of support from administration as major stumbling blocks. These and other observations were made in a Position Paper on Mandatory Reporting of Older Adult Victims of Abuse and Neglect in Residential Settings and presented to Quebec’s Minister of Health in 2014.

4 ) Privacy and confidentiality

Protective privacy laws in many jurisdictions are used to justify withholding important information with respect to an individual’s personal care. It’s ironic that instruments meant to protect them may in fact result in many elders being harmed by allowing neglect and abuse to remain hidden.

The Position Paper on Mandatory Reporting of Older Adult Victims of Abuse and Neglect in Residential Settings mentioned above concluded that “much needs to be done by the government (of Quebec) and by policymakers to stop and reduce the abuse and neglect experience by the most vulnerable people and our society.” The authors recommended that, among other things, “participants in the process should be exempt from restrictions of confidentiality.”

5 ) Complacency and cynicism

Advocates and pioneers tend to be outliers bucking the system, and systems are notoriously difficult to change. It takes vast reservoirs of courage and determination to maintain the levels of energy and commitment required to spark innovation let alone implement radical transformation. The stories and links above clearly show our eldercare systems and long-term care facilities are severely broken. Whistleblowers who speak out at great personal risk but to no avail may simply choose to give up.

6 ) A perpetrators’ paradise

While a good number of staff are compassionate and caring, the sad and sick truth is that LTCFs (and dementia care units in particular), are ideal stomping grounds for people who enjoy abusing the weak and vulnerable. Just as pedophiles enter the priesthood and other professions that make it easy to access victims while avoiding detection, elder abusers don’t want to report abuse, they want to continue abusing. That leaves it up to the rest of us to find out who the abusers are and to stop them. Not an easy task in the current UNcare environment where all five factors above are at work. I am not suggesting that LTCFs are crawling with serial abusers. But I think it’s important to be aware that the conditions are ideal for such perpetrators. On a related note, I think eldercare is extremely challenging work that is ill-suited to many who nevertheless remain employed in the field.

It’s time to take a closer look at the issue of elder abuse and neglect in long-term care facilities. The current state of affairs is completely unacceptable. We must educate, empower and encourage frontline staff to identify and report abuse and neglect whenever and wherever they see it. I also believe CCTV cameras should be required in long-term care facilities to protect both workers and residents moving forward. Change can’t come soon enough.

https://myalzheimersstory.com/2016/11/21/3-reasons-why-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

https://myalzheimersstory.com/2016/11/23/3-more-reasons-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

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Image copyright: milkos / 123RF Stock Photo

Advocacy, Poetry

our hearts and voices will be free

heart-in-a-jar-wallpaper

This poem marked an anniversary; it’s dedicated to all those who are unjustly silenced. All things pass. Our day will come. Our hearts will be free. Our voices will be heard. When lies are told, the truth unfolds. Even if it takes lifetimes. 

hearts in jars

a short poem  by punkie

two years ago
fine lies were told
they crush me to this day

then prison bars
put hearts in jars
dead silent i did stay

grave harm was done
to more than one
those scars will never fade

but truth is gold
as time unfolds
all debts will be repaid

© Susan Macaulay 2015. I invite you to share this link widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.

https://myalzheimersstory.com/2020/05/24/50-pics-that-prove-my-mom-was-neglected-and-abused-in-long-term-care/

 

Advocacy, Death & Dying, Life & Living, Poetry

behind the lines of nursery rhymes

we all fall down

by punkie

once i prayed
for you to die,
but god demurred
now here we lie

eyes wide shut
and tipped to nap
our blood gets sucked
until we’re sapped

senseless clocks
cuff heart and mind
with rules designed
to break and blind

yes sir, no ma’am
they push, then pull
black sheep pay
with three bags full

the wolf knock knocks
and granny moans
he eats her up
spits out her bones

wicked witches
two fly north
disguise themselves
and sally forth

sleeping beauty’s
prince approaches
the kiss of death
hides in his coaches

who will free our
stolen voices?
chains and boxes
leave few choices

so silent poets
flay this mime
behind the lines
of nursery rhymes

 

© Susan Macaulay 2015. I invite you to share this link widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.

https://myalzheimersstory.com/2019/09/08/alone-a-heartbreaking-poem-written-by-89-year-old-lilly-who-lives-with-dementia/

https://myalzheimersstory.com/2015/02/03/when-lies-are-told-the-truth-unfolds/

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Advocacy, Hope, Life & Living, Poetry

when lies are told the truth unfolds

heart-in-a-jar-wallpaper

This poem is dedicated to all those who are unjustly silenced. Know that all things pass. Our day will come. Our hearts will be free. Our voices will be heard. It’s just a matter of time. When lies are told, the truth unfolds. Always. 

hearts in jars

by punkie

some time ago
fine lies were told
they crush me to this day.

your prison bars
put hearts in jars
dead silent I must stay.

grave harm is done
to more than one
our scars will never fade.

yet time re-molds
what truth unfolds
greed’s debts will be repaid.

 

© Susan Macaulay 2015. I invite you to share this link widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.

still flying those night flights

missing you

hickory dickory mockery

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