People living with dementia are LIVING. They are not dead, or gone or empty shells.
They are people with abilities, skills, wants, needs, feelings, and if we help them, purpose! It’s time to recognize that, and provide PLWD the support they need – not just in a few exceptional long-term care facilities, but everywhere. We need to ditch the medical model that’s been proven to be broken and replace it with dementia care that works.
Revolutionizing Dementia Care is all about doing that. It’s full of concrete examples of the kinds of things that create positive change.
Here’s the trailer:
More important, here’s the full meal deal (I strongly encourage you to watch it in its entirety):
This is not “pie in the sky,” nor is it rocket science (as I keep saying over and over and over again). Some long-term care facilities are able to provide the kind of care that allows people living with dementia to engage life until the very end. They help PLWD to find purpose, to enjoy life, to contribute to their communities, to love, to laugh and to live fully and meaningful lives.
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.
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.
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
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Image credit: Teepa Snow (screen shot from the video below)
“If only I had known,” is what I say to myself every time I see a Teepa Snow demo I haven’t seen before. This one was no exception when I first stumbled across it.
I had very few problems helping my mom get dressed. But how many times did I watch care workers struggle to do the same? Too many that’s how many! When I saw Teepa demo how easy it can be in the video below, I again wondered why EVERYONE who cares in some way for someone who lives with dementia isn’t trained in Teepa’s practical, positive approaches to care.
Just watch the five-minute video below on how to help someone living with dementia put on a jacket or sweater in such a way that both care partners can feel good about what’s going on, and see if you don’t agree. I guarantee you will discover something you didn’t know or hadn’t thought of before.
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This Stephen Colbert bit is about the opioid crisis. But it could equally be about the polypharmacy crisis in older adults. Or the antipsychotic and psychotropic crisis in long-term care facilities. It’s all one and the same issue. #BIGpharma #bigMONEY
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It may seem like this post has nothing to do with dementia care advocacy, but it does, trust me. All will be revealed in the fullness of time…
In the meantime, enjoy former astronaut turned author and inspirational speaker Commander Chris Hadfield (on guitar & vocals) as he covers Piano Man with family physician Dr. Jeff Dresselhuis (on keyboards) and the #CMASummit2018 “jam band.”
Nashville country music artist and songwriter Jay Allen’s mother has early onset Alzheimer disease. He wrote about it here, and he sings live about it in his song Blank Stares in the video shared by a fan on the Facebook post below:
The universe’s messengers come in all shapes, sizes, colours, forms, genders, and ages. They may be living beings, forces of nature, or inanimate objects. They could be deaf, dumb and blind, ten feet tall and/or incredibly small. Some dance. Some are as vast, and deep as the ocean. Others twinkle like the night sky.
I stumbled upon one playing the fiddle on his parents’ porch in Almonte, Ontario, on June 16, 2018, at about 4:15 p.m.
Actually, that’s not quite true. One rarely “stumbles upon” a messenger from the universe, although it may indeed feel random to either or both the messenger and the “messengee” if their intuition isn’t fully switched on. But the universe’s intentions are clear, and its delivery is unmistakably deliberate and obvious when one is paying attention, which I was, as usual.
I had planned to attend a prior PorchFest de Mississippi Mills session at 3 p.m., but I lay down for a 10-minute nap and overslept. I awoke just in time to make it to 17-year-old Alexander George’s performance, one of several taking place around town at 4 p.m., but I was delayed when I stopped to talk to a stranger along the way to Alex’s gig. He was playing on the porch of his family home, which, coincidentally, is five doors down and across the street from the little house I had just purchased two days before.
As I strolled past my new place, I wondered if I had made the right decision. Two weeks later, I would abandon Quebec’s Eastern Townships, where I had spent my childhood, and which had always been “home” no matter where I travelled in the world. Mom had lived in the big red brick house on the hill on the Georgeville Road for 40 years, and had died not far from it in August 2016. Will she know where to find me after I move? I was full of grief at the prospect of leaving her, even though she was already gone. I tried hard to release my sadness. Enjoy the afternoon. Don’t spoil it with dark thoughts. My positive self-talk produced mixed results.
Two young girls were selling muffins and lemonade beside the Georges’ house. I bought a drink, and gave them a .50-cent tip. Their eyes grew wide. “Thanks!” they said in unison. I meandered down onto the sloping lawn where people were gathered in small groups under the shade of trees and large bushes to take the edge off the heat. I sat down alone on the grass. Alex began to play what must have been the third or fourth song in his set. The Tennessee Waltz. Tears sprang to my eyes, and streamed down my cheeks. Had they known in advance they would be called into action? Luckily, a lady sitting not too far away had tissues.
I first heard The Tennessee Waltz when Eric played it for Mom one afternoon in early 2014. I fell in love with the tune on the spot. Mom knew all the words of course, and I learned them quickly enough. How many times had we sung it together? Dozens. She beautifully, and me badly. It was one of our favourites.
Two-thirds of the way through Alex’s captivating interpretation, I somehow found the presence of mind to pull out my iPhone and push record.
Here’s a full version from Alex’s first (and undoubtedly not his last!) album, just as he played it on the porch accompanied by piano:
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In 2011, UK pub owner Alex Lewis somehow contracted Strep A, an incredibly rare bacterial infection from which a person’s flesh starts to eat itself. The infection attacks the limbs, then works its way inwards, through the joints, past the vital organs before finally – fatally – destroying the heart.
“I shouldn’t have survived it,” he says. “I think 10,000 people a year contract Strep in some form, and of those about 9,600 die. Then of the 400 left, only about 10 have quadruple amputations. I’m one of the lucky ones, definitely,” Lewis says in this 2016 Telegraph article.
I watched the documentary below, spellbound for an hour, as Lewis’s story unfolded starting with how the disease left him severely disfigured and disabled. Both he and his life partner Lucy demonstrate unbelievable courage, determination and loyalty throughout the several years covered in the video that focuses on hope and possibility.
While Lewis’s story isn’t about Alzheimer disease or another form of dementia, it is about love, care, caring, challenge, courage, compassion, determination, life, living, reframing and transformation, all of which are integral to the lives lived by people with dementia and their care partners.
I hope you find it as inspirational as I do.
Lewis’s closing words reminded me of what Mom told me in 2014, and what caregivers from around the world said they had learned when I asked (also inspirational):
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Okay, I admit it; the title of this post is a little deceiving. There are indeed seven ways to improve dementia care in the article, but we’ll only touch on them in the video below in less than three minutes. Implementing them will probably take at least three decades if not more! Still, there is hope for making them happen when you’ve got firecrackers like Joanna LaFleur on the task.
LaFleur worked in various types of traditional dementia care facilities for 10 years. She saw things she didn’t like. Things like neglect and abuse. She spoke up, and tried to create change, but with little success.
“People don’t really like it when you don’t like what they’re doing. So I got a lot of flack for that, and I got fired a few times,” LaFleur said when I interviewed her.
But that didn’t deter her. If anything, it further ignited LaFleur’s desire to change things. She decided to go into the care business herself. She created Dementia Specialists Homecare in 2014, and then opened her first long-term care home, Memory Lane Assisted Living, in Ypsilanti, Michigan, in 2016. The following year, she closed the home care side of the business and opened a second care home, also in Ypsilanti, about a mile away from the first.
A young, enthusiastic, passionate and determined entrepreneur, LaFleur is outspoken about what needs to change to make dementia care what it should be. When I asked her what she felt was required going forward, she didn’t hesitate to name seven key points:
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It took Lori Derkevor more than a year to find a lawyer who would take her case (see below). In the end, Amani Oakley agreed to help her. Now, Oakley has joined forces with two other Canadian law firms to create the Nursing Home Action Coalition to bring legal actions against big players in the long-term care industry. Oakley explains why in this CTV News interview:
Here are some excerpts from a Toronto Star story on the three legal cases that are currently being pursued:
Jose Novo had bed sores so deep that bone was exposed. In October 2015, Novo was taken to the hospital for “infected decubitis ulcers (bed sores),” the statement of claim says. A month later, his bed sores continued to worsen, with some were recorded as stage four, “with bone being visible,” according to the statement of claim.
Lioubov “Luba” Ijnatieva felt “something crawling” inside a skin wound on her leg. It was infested with fly maggots.
The third legal action, filed in 2016 by Oakley and Oakley against nursing home chain Revera, has not yet been certified as a class action but has grown to more than 90 cases.
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My Alzheimer's Story 