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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I didn’t want to leave my comfortable life in Dubai to come back to Canada to care for my mom. It was a role I wasn’t trained for, hadn’t expected and was comletely ill-equipped to perform. But, like many care partners, I felt I had no choice. In the end, it became one of the most rewarding things I could have done at that point in my life. The hardest thing, and the best thing. A paradox.
dementia caregivers
This poem is dedicated to dementia care partners everywhere.
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November 16, 2017: In a strange moment of foreshadowing, I took this picture of Mom and I staring into the mirror in the hallway of her big red brick house on the hill on November 14, 2012 . It wasn’t at all planned to feel like this, but whenever I see this picture I’m shocked at how it looks like we’re in a prison of sorts. Two days later, we kidnapped Mom and took her to #DementiaJail, where we both ended up behind invisible bars in a very real prison of sorts.
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My mother was a woman of great strength and determination. A fighter. This poem reflects what I know she most certainly felt the last four years of her life because she told me so every day in multiple different ways up until a very short time before she died. I continue to honour her final chapter by advocating for change.
I encourage you to listen to the poem by clicking on the arrow at the left hand side of the audio player.
Dedicated to the hundreds of thousands of elderly people around the world, particularly those living with Alzheimer and other dementias, who are physically and chemically restrained in one way or another.
i want to live
why do you wish to jail me so?
i cry, i beg: “please let me go!”
i want adventures far and near
i want to roam, I have no fear
strength abides deep within
at my core, through thick and thin
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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.
My Alzheimer's Story 