Hope, Humour, Inspiration, Love

your name is a queen (elizabeth shares a lesson on labelling)

Let it go (it doesn’t matter if they know you or not) is one of MyAlzheimersstory.com’s most shared pieces. When I posted it on Facebook in January 2020, long-time follower Elizabeth Dunbar shared this delightful story:

My dad knew my essence until his last breath. Labeling and putting people in boxes and pigeon holes is a human convention. Other animals recognize each other without knowing relationships or each other’s history. They just accept.

So whether Dad knew my name or my relationship to him or not didn’t matter to me. I remember going away for a few days about a year before he died. When I returned, I bounced into his room as always. He looked quizzical. I realized he didn’t totally remember me, and I gave him permission to do that.

“I know you’re not feeling well enough these days to totally remember me,” I said. “Is it ok to give you a hint?”

He nodded his assent.

“Well I’m the daughter. One of two children you had. I’m the one that talks a lot!” I joked.

He threw his head back and laughed with tears in his eyes.

”Your name: it’s a Queen,” he said.

“Yes, that’s right,” I said. “I’m Elizabeth. Queen Elizabeth.”

We both laughed.

This was a simple conversation we had many times after that. Sometimes I think he was lucid and pulling one over on me, because that would be him. I always treated him like he was my dad, and let him know that any forgetting was simply okay.

I love this story. It’s so hopeful and helpful, and speaks to the power of playfulness and going with the flow. Thank you so much Queen Elizabeth Dunbar.

it doesn’t matter if they know you or not

20 great questions to ask when a loved one with dementia doesn’t recognize you anymore

how often do we fail to recognize them?


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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, Information, Toward better care

no one should have to put up with that racket!

I’m compiling evidence (I’ve got LOTS of it!) to include in letters of complaint to the College of Physicians of Quebec and the Order of Nurses of Quebec regarding the “care” my mother received while in a dementia jail from 2012 to 2016.

One of the environmental aspects that contributed to Mom’s anxiety and agitation was the volume and nature of the noise around her. For the first eighteen months she was there, Mom was forced to sit in an armchair beside a busy elevator and across from the facility’s call bell panel. The panel buzzed constantly and loudly. I found it extremely annoying; so did Mom. But was it just us? I decided to solicit other opinions with a mini survey.

I invited online friends and fans to listen to a 20-second audio clip:

Then I asked them to answer three questions. When I had more than sixty responses, I did an analysis. I wasn’t surprised by the results.

Question 1:

None of the respondents found the sound calming. Only three found it neutral. The large majority (83%) found the sound annoying, and nine respondents (i.e. 13% of all respondents) found it beyond annoying (for a total of 96% saying it was unpleasant in some way); those who answered “other” described it like this:

  • Oh my shattered nerves, horrible……I just wanted it to stop!!!
  • anxiety-provoking as it endures. it is indicating something is wrong, yet I don’t know what is wrong and I also can’t fix the problem
  • Stressful
  • Irritating
  • Distressing
  • so scary… a violent aggression to my ears, to my body, to my heart, to my soul! Panic… a sense of being trapped… attacked with no way out! Thank god for the sound of your soothing voice
  • most uncomfortable – didn’t like it at all
  • Almost painful
  • It hurts. I can’t think straight. It distracts and annoys me. I’m looking for ways to stop it.

Question 2:

Question 3:

The third and last “question” asked respondents to comment. When I did the analysis, Question 3 had generated 33 responses from a total of 68 respondents (i.e. 48% of all respondents left comments). Twenty of those who commented (i.e. 29% of all respondents and 61% of those who commented) expanded on the annoyance factor:
  • I have six five-year-olds in my care. I enjoy getting them rowdy, busy and boisterous. This background sound is detrimental to me and anyone who can hear it. I played it to my band of five-year-olds through a speaker. They clapped their hands over their ears. One told me to “make it shut up!”
  • I work at a specialized Dementia facility and this would freak out my residents
  • I don’t have alzheimer’s but I do have epilepsy and sounds like that really bother me especially high pitched ones.
  • Chaotic feel
  • Noise was painful
  • Those sounds make my brain crazy
  • No-one should have to put with that racket!
  • Get me out of there… fast.
  • I think this sound would be really annoying to a person with Alzheimer’s
  • I’m a carer and, if I didn’t like it, I’m sure my husband who has AD wouldn’t either.
  • I have extremely sensitive hearing and noises like this jangle my nerves.
  • that sound left me very unsettled…
  • hurts my head!
  • The sound is annoying, high pitched and likely induces anxiety in someone with dementia. A softer bell or other ringtone or even music could be a much better alternative.
  • Very annoying sound
  • Seems sound would cause severe stress over time.
  • Incredibly irritating sound, would make me furious if I was subjected to it for a long time.
  • I hated the noise – it set my teeth on edge & I wanted it to stop immediately.
  • curious when we get more info on the project, can’t imagine anyone would find it calming unless it reminds them of home (reminded me of a hotel I stayed in Lima)
  • Brought on anxiety

I received these additional comments on Facebook:

  • OMG, that was a very stressful 20 seconds!
  • I cant listen beyond 5 seconds. I can’t think. It eats into my brain. I want to make it stop. I put it through my speaker, I normally have music blasting through..it was hell. It hurts. I want it to stop.
  • Unnecessary, annoying in a sense heightening manner, with my being on spectrum may affect me differently, but it was just shy of neurological torture in that short span alone.

And one friend quipped that it wouldn’t be long before he’d take a sledge hammer to the sound panel.

If people who DON’T live with dementia find something in the environment annoying and agitating, what might it be like for those who DO live with dementia? It’s really not that hard to figure out what environmental factors might be distressing to someone who lives with demential. All you have to do is ask yourself what you find irritating and/or distressing, and put yourselves in their shoes.

The oh-so-irritating call bell alarm panel sound was eventually changed to something more like a “ping,” but only after Mom had been there for about eighteen months. And that wasn’t the only anxiety producing noise she had to endure. She had always hated loud sounds. It must have been unrelenting torture for her to be imprisoned in such a noise-filled environment. No wonder she was “agitated.” 



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Advocacy, Information

how do you feel about this sound?

Thank you for helping me with this little project.

1) Play this 20-second audio clip:


2) click here and tick one of three boxes describing the sound of the buzzer you heard in the background of the clip.

Thank you!

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Resources, Tips, tools & skills, Toward better care

need more sleep? here’s a care partner tip that might help…

Catherine Bixenman-salesi, who is a member of the online dementia support group USAgainstAlzheimers, is the primary care partner to her mom who lives with Alzheimer disease. Catherine regularly shares innovative, interesting and easy-to-implement “work arounds” to address the challenges she faces interacting with her mom. See more of Catherine’s tips at the end of this post.


One thing that exhausts many dementia care partners is lack of sleep.

Long-time care partner Catherine Bixenman-salesi found a way to get more sleep every night, AND keep her mom safe and secure. Here’s what she shared with me and others in a Facebook support group:

I just figured out how to set my mother’s baby monitor alarm clock feature. Now, I can get some sleep and not worry about over sleeping when it’s time to toilet her. In the middle of the night, I can just look at the monitor to see if she is sleeping soundly. Or, if she starts to get anxious, I can talk to her using the monitor without having to get up.

When I talk to her, she sits up and listens to my voice. Sometimes I put the lullaby mode on, and she sleeps soundly. I love this gadget! I should have purchased one years ago. The camera works great. I put the monitor on my nightstand and I can watch mom from my room. I wish I had bought the monitor years ago. I spent so many nights sleeping in her room on the floor or in her bed – not to mention all the times I got up to check on her and then couldn’t go back to sleep!

The brand I have is Willcare, but there are loads of others. I chose this one because it’s simple. You plug the camera in an outlet, and you can point it where you want to see. Then plug in the monitor wherever you are. You must have WiFi (smart phone not required). It’s extremely easy to use. I can see mom on the screen. I leave it on all the time. It makes a sound when she turns or starts to move. I push a button, and i can talk to her and she can talk to me.

I bought the monitor on Amazon about a year ago, and it really has allowed me to get a few hours of uninterrupted sleep each night. I can’t tell you how many times I would get up to make sure my mother was breathing.

I read a lot of reviews, and chose one that I thought would be simple and easy to use. I don’t have a smart phone, but there are ones you could use with your phone. It can also be used unplugged for a few hours. The alarm clock can be set to ring every two, four, or six hours. I encourage all caregivers to buy one. You can find them on line here, just read the reviews, and choose one you like. I hope this tip will help someone else.

I wish I had thought of this when I was living with my mom in her own home — I might have gotten more sleep too!

hot pink duct tape solves alzheimer seating issue

turn potential dementia disasters into fun and laughter

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Advocacy, Resources, Toward better care

what if everything we’ve been taught about dementia care is a lie?

That’s what Dr. David Sheard asked himself in 1995, along with “What if people with dementia don’t have any behaviours?” and “What if we’re actually killing them?”

Based on the answers to those questions, he founded Dementia Care Matters and developed the Butterfly Household Model of Care, a framework that transforms the care home cultures and environments into ones in which people living with dementia can thrive instead of just die.

This Toronto Star video shows what that transformation looks like, and fills me with hope for the future:

More on the in-depth story entitled “The Fix,” by the Toronto Star’s Moira Walsh here.



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Resources, Tips, tools & skills, Toward better care

hot pink duct tape solves alzheimer seating issue

Catherine Bixenman-salesi, who is a member of the online dementia support group USAgainstAlzheimers, is the primary care partner to her mom who lives with Alzheimer disease. Catherine regularly shares innovative, interesting and easy-to-implement “work arounds” to address the challenges she faces interacting with her mom.

I found this one to be particularly creative and practical; here’s a slightly edited version of what Catherine wrote in the support group update:

“I like to pass along tips I have figured out along the way; I hope others will find them helpful/useful.

I was having problems getting my mother to sit in her wheelchair. She just wouldn’t do it. Every time I would try to get her to sit, she’d have a panic attack and start screaming “no, I can’t!” while she grabbed my arms with an iron grip that caused them to be sore to the touch by the end of the day.

One evening I was sitting in the living room, looking at the wheelchair and wondering why she wouldn’t sit in it. Suddenly it occurred to me that her anxiety might be caused by the fact that the whole chair was black. “Maybe she can’t figure out where the seat is because the colour,” I thought to myself. Then I had an “Aha!” moment.

I found my daughter’s hot pink duct tape, tore off a three-inch strip, and stuck it dead center on the wheelchair seat. I thought if I used more, it would be too slippery, and as I wipe the cushion frequently, I also thought germs might adhere between the strips and the seat. Plus, a small square would be easier to remove/ replace.

I also found an old table leg and put some pink tape on the end of it. Now when I ask Mom to sit, I use the table leg as pointer. I tap the stick on the square of pink tape, and say, “Sit here, Mom.” Presto! She sits down pretty as you please. No more anxiety, no more struggle, no more sore arms!”

What a brilliant idea. Much better than saying a person is “resisting care,” or labeling her “combative” and then drugging her into compliance!

Thanks for being such a great dementia detective Catherine, for coming up with creative solutions like this one and for averting arguments by making your mom laugh. You are a care star!

turn potential dementia disasters into fun and laughter

10 ways to get to the bottom of behaviour and problematic situations in dementia care at home and in LTCFs

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Resources, Tips, tools & skills, Toward better care

5 ways to make toast in long-term dementia care

UK dementia care pioneer David Sheard suggests the ways people with dementia are treated in long-term care facilities may be categorized into five types. He bases his theory on a study comprising 500 audits conducted by his consultancy Dementia Care Matters in the UK.

Sheard’s five types are:

  1. Positive social (10%)
  2. Positive (5%)
  3. Neutral (70%)
  4. Negative protective (10%)
  5. Negative restrictive abusive (5%)

He demonstrates in this telling five-minute video using the example of making toast:

Unfortunately, I witnessed lots of negative restrictive abusive “care” in Mom’s Dementia Jail. To be fair, there were some care workers who delivered what Sheard describes as positive social care, but they were by far in the minority, particularly among the nurses I’m sorry to say.

What have you seen most often in practice? Even better, what have you practiced or do you practice yourself?

painful care partner choices: love or loss (or sometimes both)?

25 dementia communication quick tips in 4 minutes!

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Image copyright: belchonock / 123RF Stock Photo

Resources, Tips, tools & skills, Toward better care

two quick dementia care conversation tips from dr. al power

I highly recommend Dr. Allen Power’s two books Dementia Beyond Drugs, and Dementia Beyond Disease for care partners and care workers who want to deepen their understanding of how to best engage and support people living with dementia.

The books aren’t cheap. BUT, they are excellent value: full of real-life stories, tips, perspectives, new ways of thinking,  and good, solid, practical care giving advice. I reference them all the time.

I was delighted to chat briefly with Al via Zoom about two ways to foster rich and enjoyable conversations with people living with dementia at any stage. Essentially, they boil down to:

  1.  reframe questions as statements
  2.  offer choices in a variety of ways depending on the person

Watch the video for more:

More from Dr. Power and Dementia Beyond Disease here:

10 pieces of wisdom from dr. allen power & dementia beyond disease

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Hope, Inspiration, Quotes

how often do we fail to recognize them?

Coauthor of A Pocket Guide for the Alzheimer’s Caregiver and one of Maria Shriver’s Architects of Change, neurologist Daniel C. Potts champions life-affirming care for those living with Alzheimer’s disease/Dementia and their care partners. His blog is here.

When I saw the above quote of his on Twitter (@DanielCPotts), I just had to create a meme with it. What a wonderful, mindset-changing sentiment which EXACTLY captures the importance of looking beyond and behind the condition to see the person that remains until the end.

The quote also joyfully reminded me of these moments with Mom as well as other reflections on recognizing and being recognized:




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