Six years — almost to the day — after the Director of “Care” at the #DementiaJail in which Mom resided stood up in court and lied about the way my mother was being treated under her supervision. Now, I’m preparing a complaint to lodge against the DoC with the Quebec Order of Nurses. Part of preparing the complaint involves going over all the videos, audios, images and notes I made to document the neglect and abuse my mother was subjected to for four years until she died on August 17, 2016.
This video shows Mom’s condition on December 1, 2013, after I had asked the charge nurse not to give my mother a morning dose of antipsychotics because she could barely walk. My request was denied. I took Mom to my house where she slept sedated in a chair for several hours before waking up and again experiencing great difficult walking. I called it the Seroquel shuffle.
No one with a modicum of common sense would have given my mother antipsychotic medication in the condition she was in before breakfast that day, which was essentially the same condition she was in when she woke up in the afternoon at my home. The debilitating effects of the drugs were shocking; they are documented in the video below.
Six years later, it still makes my blood boil.
To add insult to injury, I was branded a troublemaker for advocating on my mother’s behalf, and for the last eighteen months of her life the time I was allowed to spend with her each day was restricted.
I believe what goes around comes around. The abuse and neglect will all be fully revealed one day.
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On February 26, 2015, I received a registered letter from the facility in which my mom had resided for two and a half years requesting that I limit my visits to my mother to between the hours of 1 p.m and 3 p.m. on Monday, Wednesday, Thursday, Friday, Saturday and Sunday, and from 2:30 p.m. to 4:30 p.m. on Tuesdays.
Mom loved to have afternoon tea in the living room with me. Tea was from 3 p.m. to 5 p.m. The restrictions meant we would only be able to have tea together once a week on Tuesdays instead of every day as we had been accustomed to do. She also got a great deal of joy from Thursday morning sing-alongs; we would no longer be able to attend those either.
Furthermore, Mom was normally in a sedated antipsychotic sleep each day until about 3 p.m., which meant she would be sleeping during the time I was “allowed” to visit. I asked for the hours to be changed. My request was refused.
Denying family members access to the people they love is a form of abuse. The abuse and the number of people who are subjected to it in Canada is finally coming to light because of advocates like me, Mary, and Tanni. See our stories in the videos and links below.
I should have known better than to invite my photographer friend Edith to do a day-in-the-life photoshoot of Mom and I on a Friday.
I had intended for Edith to capture in images the wonderful time Mom had when I brought her to my place for lunch or dinner. I wanted to show how well she was able to function, how she helped me make lunch, how close we were, how capable she was, and how much we enjoyed spending time together.
But Friday was bath day. That meant Mom was more likely to be even more drugged than usual. Why? Because she “resisted” being undressed and put in the noisy whirlpool bath with a sling-like lift that must have frightened her. Sometimes she resisted “violently,” just as 98 per cent of “normal” people would under similar circumstances (per my Short Survey on Behaviour). Adding fuel to the fire was Betsy,* the nurse who gave the baths; she was as mean as a junkyard dog. I don’t recall ever seeing her smile during my four years of daily visits to Mom’s dementia jail. On several occasions, she mocked Mom right in front of me; in one instance making fun of the fact that Mom had to pull herself along with her feet in the wheelchair to which she eventually became confined. Mom wasn’t the only resident I witnessed being subjected to Betsy’s abuse, and one of the care workers confided in me that she would sooner send her mother to hell than place her in a home that Betsy worked in.
Betsy was close to six feet tall, and solid. Real solid. They called her “the sergeant major.” Mom, on the other hand, was five foot two, osteoporosis having shrunk her a couple of inches in the previous decade. She was in her mid-eighties, living with dementia, and sedated with antipsychotic drugs because some of the staff–the ones who failed to engage her in ways that worked for her–found her challenging.
Mom’s bath time aggression was carefully recorded in the nurses’ notes I got copies of when I launched a legal bid to get control of her care in August 2013.
On April 12, 2013, for example, Betsy wrote:
Then a week later:
Hmmmm. So it wasn’t okay for Mom to call out for help when she felt threatened, and under attack, but it was perfectly fine for Betsy to do so?
I know Mom’s reactions could have been prevented with the right approach; I know it with one hundred per cent certainty. But Betsy either didn’t know the right approach, didn’t have time to use it or didn’t want to use it. Caroline or I helped Mom shower every morning for more than a year, and Mom never hit, slapped, kicked or pinched either of us. Ever. Sometimes she was slightly reluctant, saying she didn’t need a shower (for example), but we always managed to convince her, and the process always unfolded without incident. In fact, mostly it was a pleasant experience for her and for us. But Betsy didn’t use the right approach, and everything went pear shaped as a result.
Of course Mom and dementia were blamed for the “bad bath time behaviour,” and when things got really out of control, they gave her an extra dose of whatever to subdue her. That’s why and how she ended up like this on that failed photoshoot Friday in 2014:
This video of my catatonic mom haunts me. I can’t imagine anyone watching it without being shocked, even horrified. It reminds me of the final scenes of One Flew Over the Cuckoo’s Nest in which Jack Nicholson’s “troublemaker” character Randle McMurphy is made vegetative after being lobotomized. I remember crying when, out of love and compassion, McMurphy’s big native friend (Chief) kills him by smothering him with a pillow. I never dreamed I would one day see the same vacant look in my mother’s eyes.
“It was a barbarous procedure with catastrophic consequences, and yet it was once widely accepted and even earned a Portuguese doctor a Nobel Prize. In the annals of medical history, it stands out as one of medicine’s biggest mistakes and an example of how disastrously things can go wrong when a treatment is put into widespread use before it has been adequately tested.”
Maybe one day we will also stop giving antipsychotic drugs to people living with dementia for the same undeniable reasons, and they won’t be tortured and abused like my mother was for the last four years of her life.
Many of the comments people make on my posts, and the stories they send me by email and snail mail break me heart. Some literally bring me to tears. This is one of them – a comment CL made when I posted “an open letter to the dementia community worldwide” on the MAS Facebook page:
“When my father was in the hospital for a stroke, a gentleman used to show up every day. He was an older patient, and he used to tell my dad great stories and jokes from his younger years. My dad thoroughly enjoyed these daily visits.
One day my dad asked me to check on “Robbie” because he hadn’t seen him in a couple of days. So I checked with the nursing staff and they said he was moved to a different ward. So I went to look for him. I found him restrained in a chair, in a zombie daze and drooling. It was heartbreaking!
When I questioned the nurses, they said someone complained about him walking around talking to other patients, so they did this horrifying drugging and restraining!. I cried. Then I told my dad he had died. I couldn’t tell him the truth. It was awful!.
P.S. Robbie never hurt or touched anyone. He just stood at the bottom of the bed and talked. Still haunts me to this day. Five years now.”
The very same thing happened to my gregarious and fun-loving mom: she was physically and chemically restrained for being friendly and sociable. Just the thought of it still makes me cry. Imagine the state of poor “Robbie,” who had brought others joy with his “wandering,” if his friend’s daughter felt it was better to tell her father Robbie was dead rather than tell him the truth of what had happened. Better to say he was dead. Think about that.
I believe it’s a crime to do this to vulnerable people, and in particular to vulnerable elderly. We must stop it. And we must #BanBPSD.
Kate’s comprehensive and thought-provoking statement comprises a wealth of information including a list of 10 Dignity in Care Principles, which Kate originally published on her blog in 2014.
Inspired by her list, I added ten more items to create twenty actions that long-term care providers and their staff could implement to foster and maintain the dignity of people living with dementia (PLWD) who reside in their facilities.
At some point in most dementia care partners’ experience they will find themselves on this battleground: wishing for their loved one the peace that comes with death, while feeling immense grief at the prospect of losing them. The resulting mix of emotions — compassion, guilt, longing, regret, sorrow and more — is exceedingly difficult to cope with.
This poem is about the heart-wrenching conversations one has with self and the powers that be at those times. It’s the second version of a poem i called “a daughter’s prayer to god,” which I first wrote in 2014, after Mom came “this close” to dying.
November 16, 2018: I doubt I will ever get over the deep grief I feel each November 16, the day my mother was relocated to #DementiaJail in 2012. All I can do is try to process it in whatever way I can. This year, once again, it’s with poetry.
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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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Many of the comments people make on my posts, and the stories they send me by email and snail mail break me heart. Some literally bring me to tears. This is one of them – a comment CL made when I posted “
My Alzheimer's Story 