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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Harry, who is an administrator on the Forget Me Not page, posts there frequently, and sometimes shares those posts on his personal page. This particular post really resonated with me:
“Are we missing the point concerning raising dementia awareness? Are we so focused on finding a cure for Alzheimer’s that we are forgetting about the people living other forms of dementia? Today Hazel and I volunteered at the Alzheimer’s Associations Walk to End Alzheimer’s and had a wonderful time, but something was missing.
I listened to the speakers and heard the statistics and how horrible this disease is. What I didn’t walk away with, was the feeling of Hope. It was nice to hear how much money sponsors contributed and who gave the most, but is that how we are going to end Alzheimer’s?
I know I am being over critical and going to catch Hell from many directions, but the path of dementia I am walking on is comprised of people living with various forms and stages of dementia. Money is not going to get them off that path, only Hope can.
Money is needed to find a cure for future generations and I’m for it, but damn it, don’t people realize that my friends don’t want to hear about the miseries or the statistics, they want to hear how they can live with their disease today.
Why is it so hard to speak about Hope and how we are spending money toward finding ways to live a better life? When we talk about finding a cure, why can’t we also want to find a cure for Vascular Dementia, Lewy Body Dementia, Frontotemporal Dementia and all the other forms.
My biggest question is, why do we need to sell the miseries of our disease to raise funds. Maybe if people saw the Hope and progress the grass roots are making into how people think about dementia, they would give more.”
Several people who also live with dementia made these comments on Harry’s post:
“The negative narrative feeds fear and dread and disables people upon diagnosis. When we speak out our diagnosis are questioned because of the negative perceptions of professionals who should know better. Other diseases are portrayed in a more positive light, breeding enablement and hope, why can that not be the narrative around Dementia.” ~ HG
“This is precisely the problem. Perpetuating the tragedy stereotype is what They use to raise money. Dispelling myths and demonstrating we’re still human with equal human rights is what We do to raise hopes. Someone needs to get Our truth to the masses.” ~ Mary Radnofsky
“Very well said! I have often felt that some of the big associations care much more about the money than they do about people living with the disease.” ~ SW
Like Harry and I, others in the worldwide dementia care advocacy network are asking pertinent and powerful questions such as: why do we need to sell misery and our souls to get funding for dementia care?
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There’s a big myth out there that dementia causes the people who live with it to be anxious when it’s actually a whole bunch of other stuff that, in most cases, lies behind the words and actions they use to communicate and that those around them find challenging.
I have 600+ posts on this blog; they include tips, tactics, strategies, lived experience, videos, audio, pics, etc. Explore! (to subscribe for free – see below)
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Someone asked me this question on Quora. I thought it might be useful to share my reply here as well so others might be helped with the information.
~~~~~~~~~~~~~~~~~~~
How difficult it is depends in large part on you, the care partner.
If a care partner is devastated and grieving over the fact the person they love who is living with dementia doesn’t recognize them, I think she or he will find it much more difficult and stressful to provide good, loving, compassionate care.
On the other hand, if the care partner can let go of his or her ego, and understand that being recognized by name or by face is really not that important, then I believe he or she will have a much easier time as a care partner. She or he will be less stressed, more relaxed, more loving and compassionate, more open to going with the flow, and more able to find joy, happiness and fun.
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“It enrages, sickens and saddens me when I see Alzheimer’s Disease International promoting Eli Lilly and Janssen R&D/Johnson & Johnson,” I rant in an email to a fellow dementia care advocate/activist on the other side of the world. Half a planet separates us, but my gut tells me we’re on the same page. My gut is right.
“It f*****g sickens me too!” she replies in short order.
The “documentary” comprises a total of thirty-five four- to five-minute videos; they are divided into three sections. Topics range from “maintaining quality of life” to “person-centred care.” The videos are in a news-magazine-like format to give the impression they are, well, news. It’s a clever way to camouflage the fact that the “documentary” actually features sponsored content from “leading academic, research and care organisations,” which means the corporations and organisations paid to be in the “documentary,” which means it’s not a documentary at all; it’s an advertorial.
Noteworthy among the participating sponsor/advertisers are two of the world’s biggest drug companies: Eli Lilly and Janssen Inc. a pharmaceutical company of Johnson & Johnson. Each has its own five-minute video in the larger advertorial.
“Making medicines that help people live longer and healthier lives is what the Eli Lilly company was created for, and working on Alzheimer’s disease has long been a priority,” a “reporter” gushes at the start of the Lilly commercial, which, predictably, goes on to heap praise on the #BIGPharma giant.
X in 2009, Eli Lilly pleaded guilty to actively promoting Zyprexa for off-label uses, particularly for the treatment of dementia in the elderly. The $1.415 billion penalty included an $800 million civil settlement and a $515 million criminal fine, the largest ever in a healthcare case and the largest criminal fine for an individual corporation ever imposed in a US criminal prosecution of any kind (as of 2009).
Nor does it mention the fact that Lilly ‘threw in the towel’ on its most recent Alzheimer’s drug research in June 2018.
The five-minute Janssen commercial, which is the tenth in the series of thirty-five videos, begins with a short intro that leads into this statement: “Research into dementia and Alzheimer’s disease has certainly come a long way in recent years. That’s in large part due to new technology, and also a greater conversation between scientists and the wider community. Leading the field is Janssen Research and Development, one of the pharmaceutical companies of Johnson & Johnson, whose neuroscience teams are researching how to stop or slow the progression of dementia.”
The reporter goes on to “interview” three Janssen executives who not surprisingly talk about “promise,” “potential,” and collaboration. On the plus side, Janssen is at least transparent about its sponsorship of the video:
Johnson & Johnson has since settled thousands of cases involving the illicit promotion of Risperdal, (which is now “black boxed” in the US and other countries for use with people living with dementia), including Department of Justice (DOJ) civil and criminal complaints, for a total which was close to US $3 billion in 2015. Here are some additional details from the Consumer Safety Organization, which is run by several law firms keen to litigate:
“Through its subsidiary Janssen Pharmaceuticals, Johnson & Johnson tried multiple times in the 1990s to gain approval [to use Risperdal to treat adolescents and older adults], without success. But despite this, marketing efforts by J & J specifically targeted these groups for off-label usage. It encouraged the use of Risperdal…by geriatric dementia patients. It provided kickbacks to physicians who prescribed the drug, held golf tournaments, and provided other benefits to expand their market. Targeting seniors, J&J engaged in profit sharing with Omnicare, one of the largest nursing home pharmacy systems in the U.S.”
[In 2012], the U.S. Department of Justice (DOJ) levied a $2.2 billion fine against Johnson & Johnson and its subsidiary Janssen Pharmaceuticals. The core reason for the fine was Janssen’s marketing and sale of Risperdal and other drugs (Invega and Natrecor) for unapproved uses.
According to the DOJ’s public statement, the drug maker also had entered into an illegal kickback scheme with Omnicare Inc., a pharmacy that specializes in providing drugs to elderly care and assisted-living facilities. The $2.2 billion fine constitutes one of the larges healthcare-related fraud settlements in the history of the U.S. Even so, it is only a fraction of the $30 billion J & J had made from sales of Risperdal at the time of the settlement.”
The way companies such as Lilly and Janssen push their drugs to physicians and geriatricians who then prescribe them to people like my mom who lived with dementia makes me sick, and very, very angry. It makes me even angrier that despite the billions of dollars in fines, it’s still business as usual for #BigPharma, and that means hundreds of thousands of people who live with dementia are still being prescribed dangerous and debilitating drugs off label (i.e. despite US FDA and other countries’ black box warnings).
This is what being inappropriately prescribed Risperdal and Seroquel (which is manufactured by AstraZeneca*), did to my mom:
That’s why it infuriates me when an organization such as ADI, which is meant to advocate for people who live with Alzheimer disease, broadcasts the marketing messages of drug companies that are responsible for the pain and suffering of hundreds of thousand of older adults and people who live with dementia. By doing PR for #BIGpharma, ADI is indirectly endorsing the use of these drugs and feeding into the profits being reaped from their sales at the expense of vulnerable people living with dementia.
Accepting funding from pharmaceutical companies is a massive conflict of interest for Alzheimer’s advocacy organisations (read more about that here). Shame on ADI for producing, promoting and publicising corporate BS as if it were truth. Perhaps more important, shame on pharmaceutical industry executives worldwide for profit-making on the backs of the vulnerable older adults who live with Alzheimer’s disease and other types of dementia, making them sicker than they already are and even killing them for the sake of a making buck. Or, to be more accurate, billions of bucks.
A prominent clinical pharmacist in psychiatry summed it up like this in an email:
“The multinational pharma groups are huge, slick, polished and ruthless. They present themselves as organizations with an interest in health, [when] their actual focus is to make enormous amounts of money.”
Indeed. And that’s precisely why Alzheimer disease advocacy organisations such as ADI shouldn’t be partnering with #BIGpharma, endorsing them in any way, or — God forbid — doing their PR for them!
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When you tell people that care homes/nursing homes/long-term care facilities ban family members or threaten to ban them or restrict the hours they can see their loved ones, people are either shocked, or they don’t believe you, or they think the family members deserve it for being troublemakers.
This is what I know for sure: care facilities hold all the cards, and very rarely do family members deserve to be banned or threatened. It’s all about power and control.
I was repeatedly threatened with being denied access to my mother as a direct result of advocating for better care for her. For the last 15 months of her life, my visits were restricted to between 1 and 3 p.m. when she was “asleep.” There’s no doubt this was abuse.
“It is a heartbreaking, and sadly, oh-too-familiar story. My Mother was in care homes for nearly nine years. When I read the list of 25 things that are considered abuse, I cried. Many of them were daily and ongoing and par for the course where she was. We as a family fought constantly to have them addressed. We were labeled a troublesome family from the start and constantly made to feel we had no right to complain on behalf of our mother. There was also the underlying fear she would suffer more as a result of our “interference.” Threats were made about her being moved or certain family members not being allowed to see her. This fear was exacerbated by an incident that happened to another person who was banned from seeing her mother for a year because she complained about an incident she witnessed that concerned our mother and another resident. It upset her so much that she complained about it, and that ended up with her being cruelly punished like that! Tragically, I did not learn about that until a long while afterwards and it was not possible to right the wrong that had been done to her and her mother. Her mother has since passed away, and so has mine, but I am haunted by many things I saw during those years.”
If you have had (or are having) a similar experience, please share it so that other family members are also encouraged to speak out. It’s the only way we are going to create change around this abusive practice.
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Rachel* sent me the first part of her story at the end of July 2018. She told me how the residence in which her father lived had banned her from seeing him for six months because she had advocated for better care. I asked if I might share her story on MyAlzheimersStory.com because there were so many parallels to my own. She answered:
“Yes, Susan. PLEASE SHARE MY STORY. I want the world to know the painful things that these places do behind closed doors. They put all the blame on caregivers, and yes I KNOW there are a lot of bad ones out there, but until we start looking at upper management, facility owners, our own government, etc. Nothing will change. It’s all the business of the rich and powerful, from health care conglomerates, government, law enforcement, pharmaceutical, and insurance companies — THEY’RE ALL CORRUPT! Yes, Susan, share my story. I send you and you family all my best, as well as to your wise and thoughtful readers. Live well, Rachel”
Three weeks later, I sent Rachel an initial draft of the first 500 words based on the raw material she had given me, and asked her if she still wanted to go ahead. In the meantime, the ban on her being able to see her father had ended. I didn’t hear from Rachel for two weeks. Then, on September 6, she wrote back:
“Susan, oh, you’re so kind. I’m sorry I didn’t get back to you sooner. I’m not doing well with texting lately. I so much would rather talk to you. So much has happened since I last talked to you. My No Trespassing expired, and for a moment I thought that was good, but I know nothing has changed and maybe this time I’ll walk into a trap. My brother goads me through texts to go visit dad, “Your trespass was up on Aug. 16,” he texted. (Remember, my brother and I DO NOT get along). I’m thinking if I go in there, I may be walking into a trap. Maybe this time I may be arrested!!!! With the lies that DON [Director of Nursing] told about me to her staff and police, falsifying records, I wouldn’t put anything past her!!!
Well, it was agony just waiting around for some sign that it would be okay to go in. My brother texted me with hostility: “I don’t see why you don’t go in to see dad. He’s had falls lately and not doing well.” This hurts me for my precious dad, I just don’t want to be walking into a trap!!!
I found a minister, who said he would go with me, and be my witness that I would be doing nothing wrong. Just going in to see my dad and then out, not even talk to anybody else. That WAS the plan. It didn’t work out that way. On Sept. 4th I saw my very doped up, incoherent father for maybe 25 minutes. He didn’t even seem to know me. I struggle to bring myself back to his mind. Finally at one point he stuck his head forward and motioned for me to help meet him with a searching kiss. This broke my heart. I began to cry.
The nurse manager (large man) peaked his head in around the door. Soon after the police were in my dad’s room, telling me to step out into the hall. He informed me another Trespassing will [be put on] starting today, it will be for a year, and the reason for it is that I have (been accused of – more lies) “threatening messages to staff, previous having issues w/staff. Staff does not feel safe with her in building.”
I was in shock. I looked back for the last time at my dad. The officer kept demanding I move myself out of the building. The meek pastor said we did nothing wrong. I pleaded with the pastor not to talk to the officer, as they twist, and turn things around, not to be trusted. I don’t think he had as much “experience” with law enforcement as I had, by this time. After all, he said he had nothing to hide, and that he was just being honest. I laughed to myself. We made our way towards the main entrance. The tall male officer continued to tell me more belligerent things about my behavior and kept on my heels to get out of the building.
Once I was out, they separated myself and the minister. They talked to him in the lobby, while they threatened to put me in jail if I reentered the building. This was also a clear way to have a little private conversation with my witness. Once the minister came out, he told me “you better get yourself a lawyer.” (Like as if I haven’t been trying to get one since the first Trespass???) (Sorry, more sarcasm).
I’m very weak these few days, with a heavy broken heart. The lies of the nursing home, the numerous, rampant fraud, falsifying records, abuse of residents, attacks on my character, the lies said of me, the bullying by my brother who is in alignment with this DON (for his own $ agenda), the struggle to get to my dad with the last and only life line to him I have left. But now he’s so over medicated, and in pain from repeated (not reported to ME, but to my brother) falls. I am made to look like a monster to the staff, and to all who give that DON their respect for her position of authority. I thought about it today, all of it. The very things she accuses me of doing, SHE HAS DONE. I know that I am not her first victim, nor will I more than likely be her last. She is relentless with her attacks. For her it is like a sport, and she doesn’t stop until she obliterates her opponent. Susan, thank you for all your Loving kindness. My best to you, your family, and everyone who encounters a psychopath.”
“Susan, getting tired these days. Still spinning my wheels. Getting much of no where. You can run my story. By now it may not be making much sense. I’ve come to believe that the institution’s that are there to “do no harm” “serve and protect”….. really don’t. I don’t believe our government is for the people. I’ve come to the point that I almost believe that it’s these big companies that are our government. If you’re poor, where are your rights? I heard the other day that the court, legal system has always been the rich man’s game. Well, perhaps that’s true, because I just can’t seem to get justice for my dad. Susan, do with my story as you wish. I’m tired, and I have faith in you. I know that you are a kind person, and I thank you for your help in getting the word out. All my best, Rachel”
Sadly, there are thousands of stories like Rachel’s (and mine!), and there are tens of thousands more that don’t get to this point because family members keep their mouths shut about neglect and abuse because they fear (justifiably so) being banned from seeing the person they love. Instead, they are torn apart witnessing the torture; they know if they “complain” the situation will get worse. Imagine the heartbreak of that.
Telling your story helps create change. Please share yours if you have one.
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Shirley Ann Snow, Janet Ng’s mother, with her beloved Kitty Cat only two weeks before Shirley died in December 2016.
Janet Ng was the primary care partner to her mom, Shirley Ann Snow, who died three months after my mom Patti died. Janet, who lives in Texas, has been following MyAlzheimersStory.com for a long time. She has been feeling increasingly compelled to share her and her mom’s story. It looks like she’s ready to start with this guest blog post.
~~~~~~~~~~~~
My mother was stolen from me, one piece at a time, right out from under my nose. I didn’t see it until it was too late.
Dementia didn’t steal her. Nor did old age, or the natural progression of a chronic disease. Care stole her. Institutions stole her. The medical profession twisted and mutilated her until her organs shut down one by one over a period of five years. They stole her in bits and pieces, chipped and chiseled from the healthy person she had once been.
Looking back, it amazes me how I missed what should have been the most obvious clues. Like many other families who are misled by lies, cover-ups, and subterfuge, I trusted others’ judgment, their words, and their promise to do no harm. I believed their “benefits outweigh the risks” scams, their smiling facades, their tricks and their schemes. I was lulled into complacency and falsely believed that what they did was best for her when actually it was the worst. Now I am the one left with the grief and guilt for allowing them to murder her before she was meant to die.
Miraculously, Mom was alert, communicative and “with it,” until the very end. It was only during her last three days, when she became very ill, that she was unresponsive. Until that point she always knew me, and we were able to talk to each other. Amidst all the hurt and devastation, that at least was a blessing – something I can cling to. Our times together are memories I will always cherish despite everything else.
We trust doctors and nurses because we see them as omnipotent gods whom we mustn’t challenge. Even when our gut tells us things aren’t right, we dismiss our doubts and instead trust their so-called wisdom and experience. We become like flocks of sheep that only wake up when it’s too late. And by then, our experience means nothing because our loved one is gone. We are exhausted and depleted by grief, with no emotional energy left to speak out for the sake of others who are trudging the same tragic path, that I have come to believe is criminal.
It has taken me almost two years following my mother’s death in 2016 to have the stomach to think about the slow train of legal euthanasia she was on, much less write about it. But I think it’s time to speak out, and to tell her story. Why? Because I see more and more families unknowingly boarding the same train. It’s time to blow the whistle, and stop the train.
I will write about her journey into darkness, a journey that was imposed on her by the very profession that was supposed to succor and heal her. Perhaps the most frightening part is that her story is not unique, although it may have been more horrendous because she was a fighter, and it may have been tougher for the system and the people in it to collectively break her down.
I pray I’m able to fully relive her experience on paper, and that it doesn’t become too excruciating for me to recall. My hope is that the telling of it will help others avoid the same hellish path.
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Sonya Barsness defines herself as a “revisionary gerontologist.”
A revisionist, she writes in the “about” part of her blog, is “an advocate of revision; a reviser; any advocate of doctrines, theories, or practices that depart from established authority or doctrine.”
“Revisionist historians re-interpret historical records or events. As a revisionist gerontologist I believe we need to change the paradigm of aging and dementia,” she says.
I couldn’t agree more — we ABSOLUTELY need to change the paradigm of aging and dementia. And I love Barsness’s blog “being heard.” She posts relatively infrequently, which is a good thing for people like me who are snowed under with emails, and when she does post, you can be sure the piece is something well worth reading, like this one entitled “The Faces of BPSD.”
Take a look. Have a listen. I bet being heard will make you think differently too…
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As part of the campaign, fellow human rights and dementia care advocate Kate Swaffer penned “Rethinking Dementia: Normal Human Responses,” an excellent post wherein she lists fourteen simple examples of why we should #BanBPSD. Here are five from Kate’s list of 14 [I’ve added bits here and there, which I have enclosed in square brackets]:
Labeling and medicalising normal human responses to being segregated [and isolated] is wrong; it is also a breach of our most basic human right under the Convention on the Rights of Persons with Disabilities (CRPD).
Labeling and medicalising normal human responses to being forced to live in an institution is wrong; we know institutional care ensures poor care, and [given the] choice, almost no one wants to live in [an institution].
19 ) Labeling, medicalising and punishing an individual’s normal human responses to cruel, abusive, harmful and wrongful treatment by physically restraining them is abuse.
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My Alzheimer's Story 