Advocacy, Real life, Toward better care

dire state of ltc in ontario and across canada is not news

Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults died during the pandemic of 2020/21. This real life example illustrates how our voices are not heard.

~~~~~~~~~~~~~~

During the week of April 26, 2021, two separate reports, both of them “scathing,” described the long-time sorry state of affairs in long-term care (LTC) in Ontario.

The content of the reports was widely covered by the media, which is kind of surprising. Because it’s not news. The media is meant to report news. And the appalling state of long-term care in Canada is not news. It’s just the way it is, and the way it has been for decades.

The fact that LTC in Canada sucks is not news. At least not to Canadian elder care and dementia care advocates such as myself, or to many family members and care partners of LTC residents in Ontario, or across our country. Nor is it news to advocates, family members and care partners in Australia, the United Kingdom, or the United States.

We’ve all known about the shortcomings, the abuse, the neglect, and the atrocities “revealed” in these reports for a long time. In fact, we’ve been screaming about them at the top of our lungs for years, in some cases for decades. We are not shocked by the findings. Not at all. It’s just more of the same ole same ole.

When I came back to Canada from overseas in 2011 to care for my mother who lived with dementia, I knew less than nothing about providing such care. It was a steep learning curve. When she was relocated to a LTC facility in Quebec in the fall of 2012, I thought she was going to a place where people would care for her. That professionals who knew what they were doing would oversee her care. That she would be respected, not neglected.

I was wrong. Within a week, I threw all those misconceptions out the window and began advocating like crazy for my mom. I was unsuccessful.

In 2013, I initiated legal action to try to get control of her care from the sibling to whom she had entrusted it. In 2014, the facility’s Director of Nursing and its on-contract physician both lied in the court proceeding. The judge ruled against me. I visited my mother every day for the next two and half years. I witnessed her continued neglect and abuse. I started a blog. My visits were restricted as punishment. I documented everything.

Anyone with any common sense who spends time with a family member in most LTC facilities in Canada will quickly realize the system is broken. You would have to be deaf and blind not to. The proof is legion.

In October 2016, two months after my mother died, and almost four years before the onset of the COVID-19 pandemic, I wrote a post describing the reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities.

In January 2017, I spoke before a senate committee about the abuse my mother had experienced. The committee members listened, but it seems not to have made a difference. In November 2017, Quebec’s Minister of Health announced an initiative to reduce the use of antipsychotics in LTC. Too late for my mom; she had already been dead a year.

In September 2019, I submitted a twenty-page complaint to the Order of Nurses of Quebec regarding the conduct of the Director of Nursing of the facility in which my mother resided. It included an in-depth analysis of what had transpired as well as audio, video and photographic evidence that clearly showed the abuse and neglect. A year later I received a one-page whitewash in reply. I made a follow-up complaint to the Order’s Review Committee in December 2020. I haven’t received an answer to the follow-up. I have also complained to the College of Physicians and Surgeons about the physician’s conduct. No response.

In 2020, I tweaked my 2016 post slightly and re-blogged it under the title “it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks.”

 Both of these posts outlined the same basic issues it has taken an auditor general and reams of experts months to conclude. They are:

1 ) Ageism & stigma
2 ) Lack of awareness
3 ) Poor leadership
4 ) Lack of training/understanding
5 ) Low staff-to-resident ratios
6 ) Warehouse-like environments
7 ) Dis-incentivized workers
8 ) Uncaring cultures
9 ) Ineffective “policing”
10 ) The bottom line

I mean really. C’mon.

We’re not talking rocket science here. We don’t need reports. We need ACTION.

it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks

hidden restraints: hidden abuse

20 questions to ask yourself about “wandering”

Advocacy, Real life, Toward better care

quebec order of nurses accepts ridiculous excuses for physically restraining mom living with dementia

Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults have died during the pandemic of 2020/21. This real life example illustrates how our voices are not heard.

~~~~~~~~~~~~~~

Article 118.1 of the (Quebec) Law on Health Services and Social Services is clear with respect to physical and chemical restraints; it reads:

“Force, isolation, mechanical means or chemicals may not be used to place a person under control in an installation maintained by an institution except to prevent the person from inflicting harm upon himself or others. The use of such means must be minimal and resorted to only exceptionally, and must be appropriate having regard to the person’s physical and mental state.”

Nevertheless, my mother, who lived with dementia, was chemically and physically restrained in a long-term care facility for almost four years from November 2012 until she died in August 2016.

In September 2019, I lodged a complaint with the Quebec Order of Nurses regarding the facility’s Director of Nursing [XXX] who was responsible for my mother’s “care.” My eighteen-page complaint is comprehensive, evidence-based, and well-documented with photographs, videos and audio recordings. It includes sixty-three hyperlinks to evidence on this blog and other third-party sites. It is based on government policies and law, as well as the Quebec Order of Nurses’ Code of Ethics.

On the subject of physical restraints, my complaint says:

[XXX] allowed staff to physically restrain my mother using reclining chairs, wheelchairs, tables, alarms, and other means, all of which flew in the face of measures undertaken by the Quebec Department of Social Services to reduce the use of such restraints since 2002. See these links:

It took about eight months for my complaint to get to the top of the investigator’s pile at the Quebec Order of Nurses, and another six months for the investigation to be completed. On November 20, 2020, I received a letter from the complaint investigator. On the subject of my mother being physically restrained every day for almost four years he wrote:

“We questioned the reason a chair was placed under the footrest of your mother’s recliner. [XXX] explained that this measure was necessary to elevate your mother’s lower limbs and that the chair was broken. She also claimed that this was done with your brother’s consent as he was responsible for giving consent on your mother’s behalf. Finally, she said that the call bell was always available to your mother so that she could call the personnel if she wanted to get

We took care to explain to [XXX] that it was indeed a form of restraint that should not be used even to compensate for a broken equipment. She clearly understood that it was not appropriate to do so and asserted that this would not occur again.”

As I read what he had written, I became more and more incensed. I was flabbergasted that he accepted such patently ridiculous excuses in the face of the mountains of evidence I had provided including dozens of images and several videos of my mother being restrained.

On December 17, 2020, I followed up with the Quebec Order of Nurses’ Review Committee about the shortcomings of the investigation. With respect to the ridiculous excuses and lies [XXX] supplied on the subject of physical restraints, I said:

“I will address these ludicrous assertions one by one.

“…this measure was necessary to elevate your mother’s lower limbs…”

Not true. No doubt [XXX] used the excuse of the thrombosis my mother experienced in late 2012/early 2013 as the reason for elevating her lower limbs. Did she mention the reason why my mother got the thrombosis in the first place? It was because they weren’t providing her enough opportunities to exercise. Regardless, the first pictures of the chair under the recliner were taken on September 10, 2014, eighteen months after the thrombosis occurred, and when swelling in my mom’s legs was not problematic. Strangely, when it was problematic, [XXX] and her staff did little to alleviate the swelling in my mom’s lower limbs. They didn’t even provide her with proper socks to help her heal.

“…and that the chair was broken.”

This is an outright lie. The chair was not broken. I was in my mother’s room virtually every day. The recliner worked perfectly well. I know because I rescued my mother from it every time I found her there. How could [XXX] possibly know if the recliner was broken or not? She didn’t go around the place testing the integrity of the furniture. As I said above, the first pictures of a chair under the footrest were taken on September 10, 2014. The second pictures (of a different chair under the footrest of the same recliner) were taken in February 2016. That means if the chair was indeed broken (which it was not), then it would have been broken for at least 17 months. If the chair was broken (which I repeat once more it was not), wouldn’t it have made sense to have it fixed or replaced?

“She also claimed that this was done with your brother’s consent…”

Come on! Is it reasonable to believe the [personal support workers] went to the nurses and asked them to phone my brother to see if it was okay for them to put a chair under the footrest of my mother’s recliner when they wanted to? At least [the investigator] had the grace to use the word “claimed,” because this is clearly also a lie. Furthermore, even it were true, is it okay to abuse someone by physically restraining them because someone gave you permission to do so? Would it be acceptable, for example, for a teacher to tie a student to a chair if the student’s parents had given her permission to do so? Of course not! Because it’s not okay to tie children to chairs, period.

“Finally, she said that the call bell was always available to your mother so that she could call the personnel if she wanted to get up.”

My jaw literally dropped when I read this. I had to read it over several times to believe what I was reading. My mother had dementia. She didn’t know what a “call bell” was, let alone that pulling one would summon help. This is just so far out of the realm of possibility that it is incomprehensible to me that anyone who has ever dealt with people living with dementia at the stage my mother was would say something as inane as “she could have used the call bell.” This is utter nonsense. Plus, look at the pictures I provided. Do you see a call bell? No. You may be able to see a cord that is attached to my mother’s shirt with a safety pin that is attached to an alarm in the wall so an alarm rings in the unlikely event that my mother would be able to make her way to her feet (which she would not because she was trapped in the recliner). And even if she did know what a call bell was and what its purpose was and even if she were able to assess when she needed help, my mother would have had to reach behind her, over her head, behind her shoulder and way to the back in a very awkward way to pull said call bell. Or, she would have had to understand that she needed to reel in the extra “ribbon” to ring the bell. She wasn’t capable of doing any of those things at that stage of the disease, which you can hear for yourself if you listen to the audio at the link I provided in my complaint.

The fact that [XXX] said my mother could have used the call bell is incredible. Either [XXX] has very little understanding of dementia or she was desperate to use any excuse, no matter how implausible, to exonerate herself and avoid taking responsibility for the abuse my mother was subjected to. The fact that [the investigator] actually accepted what [XXX] said as the truth is equally unbelievable. It is unconscionable that people like my mother are being neglected and abused by nurses like [XXX] while your organization turns a blind eye to the ill treatment.

Furthermore, my complaint was about the ways in my mother was physically restrained every day for almost four years. The chairs being placed under the footrest comprised one example among many. Despite the evidence I provided, [the investigator] seems to have completely missed the fact that my complaint was that [XXX] “allowed staff to physically restrain my mother using reclining chairs, wheelchairs, tables, alarms, and other means.” She was trapped/restrained in other recliners (without chairs under the footrests) every day as I showed in the pictures I provided.

Such physical restraints are prohibited by Article 118.1 of the Law on Health Services and Social Services in Québec which says that such measures are not common practice, but only used exceptionally, after having assessed all other restrictive solutions. The resident’s situation must be carefully studied with due consideration for his physical and psychological state to determine the most appropriate intervention.

As of March 1, 2021, I have not received an answer to my letter to the Quebec Order of Nurses’ Review Committee. Based on my experience of elder care in Quebec and Canada, I’m not hopeful.

Still, one must #FightTheGoodFight

hidden restraints: hidden abuse

20 questions to ask yourself about “wandering”

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

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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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, Antipsychotic drugs, Toward better care

19 ltc human rights abuses i hope quebec will have to pay for

Mom drugged into catatonic state on 151223, just as she was virtually every day

On July 10, 2018, the Quebec Council for the Protection of Patients and co-plaintiff Daniel Pilote (who is a long-term care resident in Quebec), filed an application for a class-action lawsuit that targets care facilities (CHSLDs) in Quebec, Canada (more here).

Larochelle Avocats, the lawyers taking the case forward, list 19 potential breaches of the Quebec health care act in an online form that invites Quebeckers with family in long-term care in the province to participate in the class action.

My mother experienced 11 of the neglectful and abusive practices on this list, as well as others which I would also consider to be neglect and abuse, while in a private Quebec nursing home (aka DementiaJail).

Here’s the starter list of 19 neglectful and abusive practices that violate LTC residents’ human rights according to the law firm:

  1. Inadequate or infrequent bathing
  2. Incontinence pads not changed frequently enough
  3. Forced incontinence
  4. Unsatisfactory dental hygiene
  5. Lack of dental treatment
  6. Incompetent or insufficient bedside care and/or basic hygiene
  7. Having to pay for services or goods which should be included in the cost of care
  8. Inadequate medical follow-up
  9. Medication mismanagement
  10. Inappropriate use of antipsychotics
  11. Excessive use of physical restraints
  12. Lack of physiotherapy
  13. Inadequate and/or poor quality meals
  14. Rushed and/or rigid mealtimes
  15. Staff requesting payment “under the table”
  16. Disregard for the right to sleep
  17. Rough treatment during transfers
  18. Isolation
  19. Forced to pay for air-conditioning in the summer

I have applied to be part of the class action suit, and I will actively participate if it goes forward. This is the kind of drastic action we need to take in order to create change.

Do you have a family member, friend, or someone you know in long-term care? Have you seen any of these practices firsthand? If so, please speak out against the violations of their human rights.

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/2017/12/27/dont-fence-me-in-a-true-story-about-the-impact-of-physical-restraints-on-my-mom-who-lived-with-alzheimer-disease/

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Advocacy, Poetry, Toward better care

safety pins & call bells

June 23, 2018: I discover one of my mother’s nightgowns buried in a plastic bag in the back of a closet when I’m packing to move. There’s a pair of shoes (black patent leather), a black and white polka dot skirt, and a white blouse in the bag too. They were all hers.

I pull out the nightgown. It’s soft in my hands. “Snuggly,” Mom would have said. I lift it up to my nose, inhale.  It doesn’t smell like Mom. It smells like jail, even now, after two years. I hold it up in front of me, at arm’s-length. It’s white with light blue flowers, a round neck, white embroidery across the upper chest,  and four white buttons down the middle.  It’ll fit. I sleep in the buff, but I could wear it on winter mornings when I get out of bed.

I turn it around, see the small irregular holes at the shoulders, and a jagged line of haphazard stitches that close a tear about two inches long where it would have spanned Mom’s shoulder blades.

I take off my shirt, and slip the nightdress on. The institutional odour becomes stronger; I feel a little queasy.  Then, unbidden, the first line of a poem speaks itself…

safety pins & call bells

©2018 punkie

safety pins & call bells

i put on your nightgown, the one with blue flowers
it reeks of the jail where top dogs love power

there are holes at the shoulders that safety pins tore
when you got up at night, and tried to walk out the door

but the pins were attached with chains to the wall
you pulled them so tight, they rang bells meant to call

someone might come, but not in time to prevent
the pins that weren’t safe from your dress to be rent

if ever they got there, you’d be out in the hall
they’d scold and admonish, say “you’re going to fall!”

“get back to bed, lie down, go to sleep!
out come the meds if i hear even a peep.”

i didn’t get then, what caused the holes in your clothes
seems neglect and abuse sported ribbons and bows

the flannel was stitched in the laundry below
nurses answered my questions with lies and “don’t know”

but the truth is revealed in weeks, months, and years
follows the light and the tracks of my tears

the pins ripped the fabric, and hastened the end
caused me to fight, and human rights to defend

now i slip on your nightgown, the one with the scars
and thank god you are free of the chains and the bars

©2018 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.

The safety pins, chains, ribbons and call bells did not prevent falls and injuries as is clear from the cuts and bruises beside Moms right eye.

 

20 questions to ask when a care partner or resident walks around at night

don’t fence me in: a true story about the impact of physical restraints on my mom who lived with alzheimer disease

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Advocacy, Challenges & Solutions, NHBPS, Toward better care

hundreds of studies make me mad as hell

I am frustrated by the fact that what is self-evident to me (and to thousands of other family care partners) appears to be a mystery to care providers, and apparently also to a whole whack of policy and decision makers who seem to require untold quantities of expensive research to confirm that which is as plain as day to dementia care advocates worldwide. Maybe someone should research why we need research to prove what is common sense and what dementia care advocates already know.

A team of 14 researchers at the University of Exeter in the UK likely spent a year or two working on this paper: Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia, which was published in January 2018 in Psychological Medicine; see a layperson’s version in ScienceDaily here.

The team looked at research that spanned four decades and produced a 10-page report that came to a seven-line conclusion, which reads in part:

“Our findings suggest that efforts to improve QoL might focus on supporting relationships, social engagement and everyday functioning, addressing poor physical and mental health, and ensuring high-quality care.”

This is news?

According to the abstract, the conclusions were based on the analysis of “198 QoL studies taken from 272 articles in the meta-analysis.” It boggles my mind when I think about the amounts of money and effort that went into all those studies to come to the conclusion that people with dementia need the same things to enjoy a reasonable quality of life as people who don’t live with dementia. Hello! People who live with dementia are people, not aliens.

Wikihow gives a great list of five personal quality of life indicators for regular folk that include those in the Exeter study conclusion plus several others; here they are:

  • Quality of living conditions
  • Access to healthcare and education
  • Feelings of safety and security
  • Social interactions and relationships
  • Sense of purpose and meaning

Naomi Feil suggested a similar set of needs in her 1993 book The Validation Breakthrough, and of course there’s the person-centered model proposed by Tom Kitwood in the late 1990s, and the well-being model more recently outlined by Dr. Al Power in Dementia Beyond Disease: Enhancing Well-Being, which all say something similar in different ways.

The second half of the Exeter study’s conclusion calls for more research; it says:

“However, there is a need for longitudinal evidence that can point to ways of maintaining or improving QoL over time and enable identification of people at risk of declining QoL, so that preventive interventions can be targeted to this group.”

With all due respect to the researchers, I don’t think we need more research. We need better dementia care.

I think we need to immediately implement action plans that will transform substandard conditions in long-term care facilities and in our own communities to bring them up to acceptable levels. We need to put frameworks and programs in place that will ensure that the majority of people living with dementia attain a reasonable quality of life, whether they live in their own homes or in institutions. We are still a long way from that goal. We need to attain it before we have to maintain it!

The challenges and circumstances under which hundreds of thousands of people who live with dementia struggle every day preclude them from living well and enjoying a reasonable quality of life. These deplorable conditions include being misunderstood, stigmatized, vilified, neglected and abused, as well as being physically confined and chemically restrained, among other indignities.

It makes me mad as hell, and even more determined to be a creator of change.

#wecancarebetter

13+ needs we share with people who live with dementia

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Advocacy, Challenges & Solutions, NHBPS, Toward better care

how would we behave if we were locked in? research shows 96% of us would respond the same way many people with dementia do

I remain astonished that the vast majority of geriatricians, gerontologists, neurologists, and other medical geriatrics professionals persist in using the artificial construct of behavioural and psychological symptoms of dementia (BPSD) to describe the behaviours of people who live with dementia (PLWD) that care partners and care workers experience as challenging when it is ridiculously easy to prove (even I can do it), that such behaviour is normal under the circumstances in which PLWD find themselves.

In 2016, I created “a short survey on behaviour” and invited people to respond. The survey remains open online, and the results are consistent over time; as of May 7, 2018, 1,555 people had responded. Based on that piece of lay research alone, the only possible conclusion is that BPSD are not symptoms of dementia.

However, I am determined to gather more evidence to support my case; my goal is to stop the use of the erroneous and harmful label BPSD.

In April 2018, I created another survey (Is it normal?) related specifically to “wandering” and “exit-seeking behaviour.” As of May 7, 2018, 510 people had responded; I expect the results will be consistent over time, just as they are with “A short survey on behaviour.” It’s important to note that 90 per cent of the “Is it normal?” survey respondents indicated that, as far as they know, they do not have any form of dementia. Therefore, behaviour that 90 per cent of the respondents imagine they might exhibit under particular sets of circumstances (i.e. being trapped in their own home), could not be attributed to dementia.

A preliminary analysis of the responses to Question 6 (How would you feel/react if you were unable to leave your home when you wanted to because for some strange/unknown reason you couldn’t find the doors or, if you could find them, you couldn’t open them when you did?) may be found here.

Question 7, also an open-ended question, expands on Question 6; it asks respondents to imagine what they might do in a situation faced every day by many people who live with dementia and who exhibit what is labelled as “elopement,” trying to “escape/flee,” and/or “exit seeking” behaviour. Question 7 asks: “If you couldn’t find or open the doors to leave your home when you wanted to, what might you do? What action (if any) might you take?”

Of the 510 people who had taken the survey as of May 7, 2018, a total of 466 responded to Question 7. Here are some examples of their answers:

  • Call the watchman, call my neighbor, call my office, call my best friend. Open the windows, get on the balcony shout to someone to get help. If all fails, I could string some bed sheets on the balcony rail and slide down.
  • Try to smash my way out with something
  • Call out for help, ask people what to do, how to get out. Try to open the doors, look around for another way out. Enlist others to help. Plan a prison break. Call on the phone for help. I’d become very agitated, impatient, distrustful, restless, anxious and maybe fearful.
  • Jump out of the window
  • Look for another way out, i.e. A window, call a friend, call 911, scream out for HELP so that someone outside can hear me and help me find a way out.

To facilitate analysis, I grouped the 446 responses into six categories:

  1. Try to get help (e.g. call, ring, phone, shout, scream, yell, holler, ask, beg for help)
  2. Try to get out (e.g. climb, search, find a way out, break, smash, saw, hammer, kick, cut)
  3. Get emotional (e.g. panic, become upset, become angry, freak out, frantic, go bonkers)
  4. Don’t know (i.e. don’t know, not sure, can’t imagine)
  5. Withdraw (i.e curl up, sleep, go to bed, wait, shut down, withdraw)
  6. Do stuff (there are only two responses in this category: 1) Need to find activities to occupy myself; and 2) Do the jobs I’ve been putting off)

Here’s a graph showing the categories, as well as the percentage and number of responses in each category:

Virtually all of the ways respondents said they would react (i.e. categories 1, 2, 3, and 5) would be labelled BPSD (using the medical model). However, of the 466 respondents who answered Question 7, only 11 (2.3 per cent) said they had some form of dementia. That means a little less than 98 per cent of those who responded to question 7 either do not have dementia, or don’t know if they have it or not.

Also, of the 160 people who said they would try to escape in one way or another, slightly more than half (i.e. 87) said they would break, smash, or kick their way out.

Note: 444 of the 446 people who responded to this question identified as female.

The bottom line? Only the people who answered either “Don’t know” (n=18) or that they would “do stuff” (n=2), imagined that they would not exhibit some form of what would be labelled BPSD. That means that about 96 per cent of the respondents felt they would exhibit some form of so-called BPSD even though they don’t have dementia!

As this survey shows, when a human being is locked in and feels trapped:

Many of the behaviours that are labelled BPSD, are normal human responses to feeling or being trapped and/or threatened. What we name behaviours hugely impacts how we see and interpret them. It’s time to examine the wording of BPSD as it stands. Many of these behaviours are human responses to unmet physical, emotional and/or psychosocial needs; responses that can easily be seen as normal in the light of feeling threatened or fearful.

It’s time to reframe behavioral expressions in ways that enable us to identify their root causes and, in turn, inform improved efforts to implement humane, personalized, and effective approaches for the care of PLWD. Seniors with dementia need to be better understood and compassionately cared for, not drugged and managed to fit the constraints of a broken system.

Take the survey here.

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

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Advocacy, Challenges & Solutions, NHBPS, Toward better care

how would “normal” people feel if we did to them what we do to people who live with dementia?

The more research I do, the more proof I have that the behaviours of some people who live with dementia that challenge those around them are not the result of dementia, but rather perfectly reasonable reactions to particular sets of circumstances.

In early 2017, I began an anonymous online “survey” that is both a learning tool, and a way for me to show that behaviours labelled “BPSD” are in fact normal human behaviours. You may take that survey here; you may see the results here, or in this article published in the Journal of the American medical Directors Association (JAMDA).

I started my second anonymous ongoing online survey on April 11, 2018. The vast majority of the respondent (93%) answered an open-ended question which asked how they would feel when faced with a situation that every person who lives with dementia in a “memory care unit” and others in their own homes potentially face every day.

The question asks how respondents would feel if they could not leave their living space when they wanted to because they could either not find a door, or the door(s) would not open. Of those who responded to the question, two (2) say they would remain calm; four (4) say they couldn’t imagine what they might feel.

The other 98% say they would become distressed in some way. They describe how they would feel using words such as:

  • scared/frightened/afraid/terrified (25%)
  • anxious/upset/agitated (24%)
  • trapped/claustrophobic/imprisoned (22%)
  • frustrated (20%)
  • panicked/panicky/panic (18%)

As well as others such as angry, confused, disoriented, helpless, cross, annoyed, and crazy. Many use multiple word answers; for example:

  • Trapped, a prisoner in my own home.
  • Confused, upset, suspicious, anxious, angry, frustrated, depressed, imprisoned.
  • I would be extremely upset, panicky, angry and disoriented.
  • Angry. Upset. Confused.
  • I would became frustrated, agitated, and probably angry.
  • Terrified! Confused! Helpless! Frustrated! Angry! Embarrassed! Desperate!
  • I would freak out. Total meltdown. Panic.

Of the people who have participated in the survey to date, 89% say they do not have dementia. Therefore, their reaction to being “locked in” cannot be a result of dementia.

We’ve got it all wrong when we lock up people who live with dementia in their own homes or in memory care units, and then blame dementia for their anxiety and upset. As people who live with dementia are human, they react the same way the rest of us would if we were unable to leave our living space — they feel frightened, anxious, frustrated, trapped, panicky, angry, and confused. I experienced it first hand with my mom when I didn’t know any better.

It boggles my mind that an astonishing number of medical professionals in the area of dementia care seem not to “get it.” It’s not rocket science folks. We just need to walk a mile in their shoes.

Take the survey here.

how would we behave if we were locked in? research shows 96% of us would respond the same way many people with dementia do

“wandering” is not a symptom of dementia

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Resources, Teepa Snow, Tips, tools & skills, Videos

Teepa Snow demos 10 first steps to calm & comfort a distressed person living with dementia

This four-and-a-half minute video by Teepa Snow (see below) demonstrates 10 easy steps to calm and comfort a distressed person living with dementia.

Truth be told, these practical actions would likely help calm and comfort anyone in distress:

  1. position yourself on the person’s dominant side
  2. useHand Under Hand™ (HUH™ video demo with Teepa here)
  3. pump hand you are holding (like a heartbeat)
  4. copy their breathing with emphasis on the exhale
  5. repeat issue using their words
  6. acknowledge & validate their emotions (more on validation here)
  7. mirror their emotional state
  8. calm & slow your own voice
  9. slow your breathing, continue emphasis on exhale (more on breathing here)
  10. check / confirm issue (e.g. you’re angry?)

These are also great:

10+ Teepa Snow videos on dementia basics

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

10 things to remember when you interact with people who forget

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