July 1, 2014: Mom and I roll outside to sit with Gaby for half an hour before supper. Mom is able to stand and walk today so I help her from her wheelchair to the “deck” chair beside her friend.
“Oh Patti! Look at you!” Gaby is her usual supportive and enthusiastic self. “Look at your beautiful hair. Did you have it done today?” Mom touches her hair, looks at me. I nod my head.
“I had it done today. Is it nice?” She runs her fingers through it, checking again for herself.
“Oh yes! And isn’t that a pretty pink top? And the detail on the bottom of your pants – it’s very chic.” Gaby has something good to say about mostly everything and everyone. She notices things like the detailing on the pants; she worked as a clerk in a women’s fashion boutique decades ago. The white capris Mom has on are new. I bought them last week at The Bay, on sale. I also got a lavender pair, and a sky blue pair, as well as three matching tops. We can mix and match. “When you look good, you feel good,” Mom always used to say to me. Those kind of things still apply when you live with dementia.
“I love my Patti,” Gaby says to heaven. We sit and rock and talk about nothing, watch the traffic go up the hill beside The Home.
“Leblanc Farm.” Gaby reads the branding on the side of the rig in the few seconds it takes for it to go by. “That must be a big farm.” She’s as sharp as a tack.
It’s a scorcher of day. There are tornado warnings for southern Ontario, a nine-hour drive from where we sit in relative safety in southeastern Quebec.
“I wonder if we’ll be hit with the tail end of a storm?” I muse.
“Oh dear.” Mom worries. Gaby holds Mom’s left hand in hers. Mom rat-a-ta-tats the top of Gaby’s right hand with her right one. It’s a sign of affection. She loves her Gaby as much as Gaby loves her, but she doesn’t say so in so many words. Instead, she gives her love taps on her hand. Gaby knows they’re love taps; others don’t. That’s part of the reason why Mom is medicated with antipsychotics. For giving people misunderstood love taps.
I take some pictures. We sing O Canada. We love our country and each other. July 1, 2014: a good day.
Seven weeks after I filmed this video, our friend and angel Gabrielle went home on August 20, 2014, after she fell (maybe because of the Risperdal she was being given), and broke her foot. Gaby’s goal had been to make it to 100; she was close. Mom joined her two years later on August 17, 2016, after she too fell, and broke her arm.
On Friday, April 13, 2017, I found stories of abuse everywhere I turned.
In the morning, for example, an inbox update took me to a New York Times story headlined: “Sexual Abuse at Choate Went on for Decades, School Acknowledges,” in which it was reported that “at least 12 former teachers had sexually molested — and, in at least one case, raped — students in a pattern of abuse dating to the 1960s.”
The article expanded: “It is the latest in a string of prestigious private academies that have faced accusations of sexual abuse by faculty members, including St. George’s School, in Rhode Island, and Horace Mann and Poly Prep in New York City.”
In the evening, CBC As It Happens host Carol Off interviewed United Nations Code Blue Campaign co-director Paula Donovan on the abuse of children by UN peacekeepers in Africa and Haiti. Donovan said “there were two hundred and fifty allegations of sexual exploitation and abuse by the peacekeepers just in the Central African Republic.” That was during 2015 and 2106 alone. The peacekeepers in question, she said, leveraged their power to abuse their victims.
These things happened, and still happen, because victims are not believed, witnesses remain silent or are forced into silence, whistleblowers are vilified and punished for speaking out, abuse is swept under the rug, and organizations, institutions, and professional bodies protect themselves and their own.
I believe the same kind of thing happens with respect to the infirm and elderly, particularly those with dementia, in long term care. Their neglect and abuse remains largely unseen and unreported in facilities such as nursing homes around the world. I also believe that when lies are told, the truth unfolds.
Also on Friday, April 13, I became aware of the story of Carolyn Strom, a Saskatchewan nurse who, in 2015, had voiced her opinion regarding what she considered substandard long-term and palliative care received by her grandparents. As a result, she was convicted of “professional misconduct” and fined $26,000 by the regulatory body of professional nursing in Saskatchewan. I immediately donated to the GoFundMe campaign to pay the fine so she can continue to practice nursing.
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“One of the things we noted in our four-part study on over-medication in Canada is that it is widespread throughout the entire medical spectrum,” Senator Ogilvie said, “and it becomes pronounced in senior care and even more pronounced in the case of patients with dementia. It is a major, dramatic problem.”
The senator went on the say that seniors’ human rights are “hugely violated in many areas,” particularly with respect to over-medication. I also wanted to high-five Professor Linda Garcia of the University of Ottawa, who said of LTCF care workers: “The people who do want to do good, and who do get it, can’t.” She is so right. Blocked by old glass-half-empty mindsets, I suspect these potential innovators leave the profession out of frustration at the poor standard of care as well as their impotence to do anything to change it. Being a whistleblower or an advocate is a tough row to hoe as I have found out these last ten years.
When I was deeply moved by the now-classic movie One Flew Over the Cuckoo’s Nest in 1975, I never dreamed I would live through a version of it more than forty years later. This image is drawn from the final scenes in which “Chief” tears the hydrotherapy cart from the floor (as McMurphy had been unable to do despite his best efforts), and throws it through a window to make his escape after having suffocated his friend.
~~~~~~~~~~~~~~~
“Philippe, we have a case like you’ve never seen before,” Philippe Voyer begins as he recounts a story to Quebec Health Minister Gaétan Barrette and hundreds of participants at Quebec’s first-ever Best Practices in Long-term Care Facilities Forum. “We have a man who tore the sink right off the wall.”
Voyer, a researcher and professor of nursing at the University of Laval in Quebec city, surprised the care home staff member who had called him complaining of an unmanageable and destructive patient with Alzheimer’s disease with his answer, just as he likely is the healthcare professionals gathered at the forum.
“That sounds to me like a man with a lot of potential,” Voyer continues with his story. “He’s focused–he had to be to do what he did. He still has a lot of strength, he’s in good physical shape, what he did was impressive. I have no doubt we’ll be able to engage him in some way.”
Voyer looks at the audience, pauses slightly before he goes on. “Then the nurse tried to convince me with more evidence: ‘Oh but Philippe, you should see what he did down the hall. He ripped all the tiles from the floor with his fingers.'”
Voyer is one of a small but growing number of medical professionals worldwide who have begun to understand that so-called behavioural and psychological symptoms of dementia (BPSDs) that are blamed on Alzheimer disease and other forms of dementia are in fact not caused by the disease.
“The disease is a predisposing factor,” Voyer admits, “but it’s not the main cause. Boredom is. People in long-term care get bored, and, like we all do when we get bored, they find things to do. But the things they find to do are not always in line with what facility staff would like.”
I know the truth of what he’s saying because I witnessed it myself day after day when Mom was in what I have come to describe as “elder jail.” I’ve also heard countless stories from other care partners who experienced the same thing when they placed family members in LTC. It’s not the disease. It’s how we “care” for the people who live with it. Misunderstanding their behaviour often leads to over-medication with antipsychotic drugs.
“Some residents who have dementia may have worked all their lives doing manual labourer, for example,” Voyer elaborates. “When they feel bored, they go back to doing what they know. We learned that the gentleman who tore the sink off the wall and the tiles from the floor had been employed in home construction. He was just doing what he knew how to do. Likewise, people who are bored may start to explore. They go into other people’s bedrooms. When they do, they get involved in altercations with other residents. Soon they are labelled as having behavioural issues. What to we do then? We medicate them. It’s as simple as that.”
My experience and Voyer’s observations are supported by a growing body of evidence-based research. Recent work by Dr. Jiska Cohen-Mansfield, who has been studying age-related dementia for decades, and is an authority on the subject, clearly identifies these main causes of responsive behaviour:
boredom
lack of stimulation
loneliness
lack of activity
insufficient social interaction
being uncomfortable
pain
“It’s not rocket science,” concludes Voyer. “There are many things we can do to change the situation. And I can tell you with certainty that antipsychotics are not effective in alleviating boredom. It’s time to rethink and reduce our use of antipsychotic medications in treating people who live with dementia.”
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I was pleased to attend on Monday January 31, 2017, when Senators Ogilvie and Eggleton, and their colleague Senator Olsen welcomed a six-member panel to discuss issues relating to the committee’s report, which called for the development of a national dementia care strategy for Canada. I was also grateful for the opportunity to add my voice in the Q & A session, which followed the panel discussion. This poem was inspired by the report, the panel discussion and my own remarks.
a poem for the senate
Dedicated to the cause of creating a dementia care strategy for Canada.
The huge variance in the rates and ways antipsychotic are prescribed to elderly people with dementia around the world and the strong push to discourage and decrease their use are proof there are better ways to help people with dementia live well until they die.
In June 2012 the UK’s National Dementia and Antipyschotic Prescribing Audit Summary Report showed that while the number of newly diagnosed people with dementia increased by almost 68 per cent between 2006 and 2011, there was a 60 per cent decrease in the number of people with dementia receiving prescriptions of antipsychotic medication (i.e. to 7 per cent in 2011 from about 17 per cent in 2006) .
In contrast, the rate of prescription of antipsychotics to the elderly has remained virtually the same (i.e. between 300 and 600 prescriptions per 1,000 elderly people) in nine of Canada’s 10 provinces over a similar period (2009 – 2014) .
Shockingly, in Quebec, the province in which I live, the rate of prescribing antipsychotics to the elderly was 1,314 prescriptions per 1,000 in 2014. That’s 1.3 prescriptions per elder — four times the prescribing rate in Alberta and Newfoundland, double the rate in Ontario and New Brunswick. Antipsychotics are designed to help people with schizophrenia, which occurs at a rate of about one to two per cent in populations overall. What’s wrong with this picture?
Prescriptions for antipsychotics to elderly patients in Canada increased nearly 32 per cent between 2009 and 2014, to about 4 million prescription from about 3 million . (Download the 2015 Ontario Drug Policy Network report here.)
The total amount spent on antipsychotic prescriptions dispensed to elderly patients in Canada increased by 21 per cent to $75 million between 2009 and 2014. As the rates in the other nine provinces remained relatively flat, Quebec is likely responsible for the lion’s share of the cost increase.
The bulk (97 per cent) of antipsychotics prescribed in Canada are atypical antipsychotics such as quetiapine and risperdone.
Are there twice as many crazy old people per thousand in Quebec than there are in Ontario? Are Quebec seniors with dementia four times more likely to require medication than those in Alberta? And if so why? Why do rates of prescription vary so dramatically between provinces, regions and countries? Why do some places resist change and continue to prescribe drugs “off label” to old people with dementia knowing full well the risks include an earlier death? Why are some places, provinces, regions and countries committed to change and others seem to be in denial about moving forward?
My Alzheimer's Story 