health – My Alzheimer's Story

Advocacy, Life & Living, Toward better care

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

April 16, 2020April 23, 2020 My Alzheimer's Story

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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Challenges & Solutions, Resources, Toward better care

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia

March 20, 2020March 20, 2020 My Alzheimer's Story

Friday March 20, 2020: To say these are challenging times is a massive understatement. But we have all been through challenging times, as individuals, as communities, as nations.

Yet, so far, we have managed to survive as individuals, and as a species. We have what it takes to get through seemingly impossible challenges, especially when we work together.

Dementia care partners everywhere know that to be a fact. We have learned what it takes to survive and thrive on a day-to-day basis – sometimes even a moment-to-moment basis! Unbelievably, many of us have discovered joy and inspiration along the way.

We can make it through this pandemic. Dementia care partners worldwide know we can, because we’ve learned how to deal with stuff like this. It’s part of the territory. Yes, there will be seemingly unbearable loss and grief. But those too are part of the territory. Part of being human.

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia

Love
Hope
Resilience
Courage
Determination
Ingenuity
Creativity
Music
Connection
Caring
Compassion
Relationships
Interdependence
Empathy
Faith
Curiosity
Laughter
Kindness
Generosity
Ferocity

This post was inspired by Jamie Tworkowski, who blogs here.

17 links to the “other side” of dementia

a prayer for those who care worldwide

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Challenges & Solutions, Resources, Toward better care

20 questions to ask yourself when someone who lives with dementia wants to “go home” or tries to escape wherever they are

February 16, 2020February 17, 2020 My Alzheimer's Story

Wanting to “go home” is a desire often expressed by people who live with Alzheimer disease and/or other types of dementia, even when they are in their own homes. Not being able to fulfill a loved one’s desire “go home” can be incredibly frustrating for care partners who would certainly take their family member living with dementia “home” if only they could.

In the early days of being a care partner to my mom, I didn’t know what to do when she said “I want to go home.” She would have her little bag packed with random stuff, and be ready to go out the door.

“But Mom, we are home,” I would say. “Look, Mom, this is your furniture, these are your carpets, those are your pictures on the wall. We are home!”

When she wasn’t convinced, the conversation would get more heated as we stood arguing in the kitchen, den, or living room of her big red brick house on the hill, until I sometimes heard myself yelling at her in exasperation “Where is home then, if it’s not here?”

I soon learned that arguing with her didn’t work. It was a waste of time and energy. It left both of us emotionally drained, and no further ahead. Eventually, I found different solutions to “I want to go home,” as well as other challenges. One solutions was to put myself in her shoes, to see her reality rather than my own.

What I discovered through self-reflection, observation and my own research is the behaviour we find challenging in people who live with dementia is behaviour we would likely exhibit ourselves in similar circumstances.

20 questions to ask yourself when someone who lives with dementia wants to “go home” or tries to escape wherever they are

When you find yourself in an environment that makes you anxious or uncomfortable, what do you do?
How would you feel if you were kidnapped? What would you do?
If you found yourself in a place that that was too hot, too cold, or too noisy, what would you do?
If were taken from your home by people you didn’t know, and put in a strange place full of crazy people, what would you do?
Where do you want to go or be when you feel tired, overwrought, out of sorts, out of place, lonely, scared or overwhelmed by everything?
How important is it to your well-being to feel like you belong somewhere? Where do you feel your greatest sense of belonging?
How long can you stay in one place without wanting to go somewhere else? Hours? Days? Weeks? Months? Years?
If someone locked you in your house and told you that you could never leave, how would you feel?
As a child, did you ever fall and hurt yourself while playing outside? Where did your instinct tell you to go for safety and security?
Have you ever run away from a problem, a place or a situation? When? Why?
Do you ever feel like you just have to leave when things get too much for you to bear?
Do you sometimes just want everything to be other than the way it is?
Do you take holidays and vacations away from home? How does it feel to be away? How does it feel to be away when everything seems to go wrong?
How do you feel when you return home after a holiday, vacation or long visit with friends or family?
In general, where do you prefer to be most of the time: in your own home or someone else’s home?
In general where do you feel most comfortable and in control: in your own home or someone else’s?
What feelings does the word “home” evoke for you?
Given the choice, when you feel tired or sick, would you rather be at home or somewhere else?
Do you sometimes long to be somewhere other than where you are?
When do you most appreciate being “at home” wherever that is or whatever it means to you?

It’s no wonder people living with dementia want to go home…

13 expert tips to help with “I want to go home.”

“wandering” is not a symptom of dementia

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Advocacy, Real life, Toward better care, Videos

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

November 5, 2018November 20, 2018 My Alzheimer's Story

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

heard about the latest cure for alzheimer disease? watch this!

July 16, 2018July 16, 2018 My Alzheimer's Story

Some people say they can slow down the progression of Alzheimer’s disease, even stop it completely or reverse it. That may or may not be true.

The next time you hear or read about the next (or previous for that matter) cure for Alzheimer disease, consider this:

Things that sound to good to be true usually are too good to be true.

And, while I love this video, I would even take it with a grain of salt, particularly the bit at the end that says “talk to a scientist or a doctor” because the problem is, a whole whack of scientists, doctors and researchers are as cracked as the charlatans!

I’m all for:

doing my own research
listening to my own common sense
using my own capacity for critical thinking
exercising my intuition
seeking out the wisdom, advice and knowledge of people I know to also be sensible, reasonable, rational critical thinkers with lots of hands on experience in whatever the subject matter is

On the latest “cure” for Alzheimer disease, I’m going with the healthy approach of exercising my brain and my body, eating right, living well, having fun and being present in the moment. On the other hand, I’m not afraid of living with dementia should that be my destiny.

I’ve made the most of whatever life has dished up so far, and I intend to continue.

https://myalzheimersstory.com/2015/01/30/i-may-have-alzheimers-disease/

https://myalzheimersstory.com/2016/03/25/the-black-dots/

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Activities, Advocacy, Hope, Humour, Life & Living, Videos

how old is old?

April 1, 2018April 1, 2018 My Alzheimer's Story

I love the quote from the “old man” towards the end of the video below. He says:

“When people start stopping, that’s when they start getting old.”

I think the same principle applies to people who live with dementia. I also believe that by “getting to know” people who live with dementia, and understanding who they really are, we can change the negative narrative associated with Alzheimer’s disease and related dementias (ADRD) as well as those who live with diseases that cause dementia.

We need to think differently about what it means to live with ADRD, just like the young people in the video change their thinking about what “old” is by experiencing what “old” people can do, and also by learning from them.

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Humour, Tips, tools & skills

get silly billy!

March 15, 2018 My Alzheimer's Story

Joanna Lafleur (left in both the pics above) is the face of the new dementia care industry – or at least I hope she is. Lafleur opened her first Memory Lane Assisted Living home in Michigan in 2016. She was twenty-nine at the time. Two years later, she opened her second home. She’s busy. But that doesn’t stop her from taking the time to ham it up for selfies with residents like Marty, who, from the looks of her silly faces, is loving every minute of it.

Lafleur says:

“One of the things we teach our caregivers is to take time to be silly or even just to sit quietly. Sometimes we like to make silly faces with our residents or even take selfies. Being silly can be a great redirection tool to get a resident or family member out of a negative mood or a sad day. Try it and let us know if it works for you. And smile. Always.”

You go Joanna!

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

“You said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.

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Care Partnering, Challenges & Solutions, Humour, Tips, tools & skills

turn potential dementia disasters into fun and laughter

March 15, 2018March 15, 2018 My Alzheimer's Story

Many dementia care partners have learned that going with the flow works magic: it can turn potential disasters into gales of laughter with very little effort. All it takes is a little bit of imagination. I stumbled on a perfect real life example shared by care partner Catherine Bixenman-salesi. in the online dementia support group USAgainst Alzheimer’s.

Catherine shared the vignette in response to an article on validation that had been posted by group administrator and dementia care author and advisor Carol Bradley Bursack.

Here’s what Catherine had to say:

“My teenaged son often corrects his grandmother, and then suffers the consequences. I, on the other hand, let her stories flow. I also enjoy adding flavour to them. This makes her perk up, and turns her from sad to glad. It also gets her talking, and gesturing with her hands. I help piece the sentences together by filling in every other word, and away we go. Last night, she noticed a commode in her bedroom. She pointed at it and in an angry tone said: ‘Not mine!’ It was a perfect opportunity for some fun.

‘Tell that lazy ass woman to take her belongings with her when she goes,’ I said with a scowl on my face. ‘I have enough work to do here without having to clean up after her!’

Mom burst out laughing. What a joyful sound it was. Of course I laughed too. It seems like a silly thing, but to her it was funny. I could have told her it was hers, which it is, and she would have denied it and become hostile. Instead, I went along with her version of reality. The result? Smiles and laughs all around.”

Kudos to Catherine! I know from my own experience that this, and other imrov techniques really works a treat. I talk about in the video clip here, and in my BANGS model here. If you haven’t tried “going with the flow,” I highly recommend you do so. Your stress level will drop and your relationship with your care partner will improve.

If you have tried going with the flow and have similar stories to share, I’d love to hear them.

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Hope, Joy, Love, Music

mom’s 2012 irish medley

March 15, 2018March 11, 2018 My Alzheimer's Story

The Georgeville Neighbours’ Lunch was held (probably still is) the third Thursday of every month starting in late fall and running through to early spring. Mom usually went with her long-time friend Margery, who picked Mom up on her way to the event. Margery was a good friend to Mom. Good friends often become fewer and farther between for people who live with dementia.

When our angel Caroline joined Mom and I, she and Mom went to the Neighbours’ Lunches together. Sometimes I tagged along. The March 2012 lunch was on the 15th, two days before St. Patrick’s Day. Caroline helped Mom get “dolled up” in her best festive green gear, and before they left for the lunch Mom treated us to an impromptu concert in the living room. She didn’t remember all the words to the tunes, but that didn’t matter. It was such a joyful time. Mom sang beautifully and hammed it up, Caroline laughed so hard her cheeks hurt, and I captured what I could on my iPhone. (I’m so grateful for technology.)

By March 2012, Mom had lost her driver’s licence (the spring before), and she needed someone (either Caroline or I) to be with her all the time. She hadn’t been able to cook for herself, with the exception of making toast and tea, for more than a year. Nevertheless, she was still fully engaged with life and the people around her. In the video, you’ll see a puzzle on the table in the background, it’s a big-pieces jigsaw puzzle of Canada. We must have completed that puzzle 25 times during our last year together in her own home. Even Pia, Mom’s long-haired grey cat, got in the act.

I wish I could sing like Mom did. She knew hundreds of songs, a few of which I learned from her during her last years. She and I sang up until a couple of days before she died. Music saved our sanity; it also brought us both happiness and healing. I hope you enjoy this Irish medley as much now as we did in 2012. And oh yeah, Happy St. Patrick’s Day 🙂

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Care Partnering, Family, Inspiration, Life & Living, Videos

grandpa drake the dragon teaches kids about dementia

March 11, 2018March 11, 2018 My Alzheimer's Story

Some people use the stuff that life hands them to create magic and beauty, while others see only despair and tragedy. Dr. Jennifer Bute is one of the magicians.

When she was diagnosed with early onset dementia, Dr. Bute began using her experience as a carer, a medical professional, and a patient to help people understand more about dementia. She produced a series of helpful videos as well as other resources that explain various aspects of dementia; you can access them on her blog (called “Glorious Opportunity”) here.

This video cartoon, developed in collaboration with Bute’s family, is narrated by her daughter Allison; it’s perfect for starting a conversation about dementia with young children: