My Alzheimer's Story
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Advocating for better care.This blog shares resources, news, and stories on Alzheimer's disease and caregiving.
My Alzheimer's Story
8M ago
It’s one thing to see someone when they are sedated. It’s quite another to see the sedation taking effect, and the person who doesn’t wish to be sedated trying to fight it off.
Against my wishes and against her will, my mom was sedated with quetiapine at breakfast every day for almost four years. The dose she was given knocked her out cold for several hours. She got another debilitating dose in the evening. They also gave her risperidone twice each day. This drug regimen was an abuse of her human rights.
I had incontrovertible proof that non-pharmacological strategies improved the qual ..read more
My Alzheimer's Story
9M ago
Note: this post has been shared thousands of times since I first published it. Also, Dr. John Morley, director of the division of geriatric medicine at Saint Louis University, one of the United States foremost authorities on geriatrics, and former editor of the Journal of America Medical Directors Association called the piece a “wonderful insight, which should be required reading for all persons who have to work with persons with Alzheimer’s disease.”
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Imagine this:
It’s a bitterly cold winter night. You have recently been drafted into the role of caring for y ..read more
My Alzheimer's Story
1y ago
When I was invited to contribute to the development of educational materials for students enrolled in the healthcare faculty at a local university in 2019, I jumped at the opportunity.
As part of the project, I was interviewed about my views on including patients and care partners in the education of healthcare providers.
I answer the second question “How should we involve patients in the education of healthcare providers?” below.
How would you have answered?
In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from educati ..read more
My Alzheimer's Story
1y ago
When I was invited to contribute to the development of educational materials for students enrolled in the healthcare faculty at a local university in 2019, I jumped at the opportunity.
As part of the project, I was interviewed about my views on including patients and care partners in the education of healthcare providers.
The answer to the first question “Why should we involve patients in healthcare education?” is self evident in my opinion. The short answer is to enable providers to deliver better care. Listen to the two-minute answer in this video:
How would you have answered?
In a nutshel ..read more
My Alzheimer's Story
1y ago
I had never heard Mom sing Down in the Valley. Ever. Until a couple of years after she was diagnosed with Alzheimer disease. Then she (we) sang it every day, sometimes five or six times a day, until just before she died.
Mom and I must have sung Down in the Valley thousands of times between 2011, when I moved back to Canada to be her care partner, and 2016, when she said goodbye to this world. During that time I learned so much from our musical sessions together.
“Why don’t we sing a song Mom?” I would say when things were getting a bit out of hand, when either she or I was feeling stressed o ..read more
My Alzheimer's Story
1y ago
My mom (right) and her brother Eddy (left) during one of their last visits together (April 2013). They both lived and died with Alzheimer disease and dementia in their mid eighties.
My mom, who lived with Alzheimer disease, and I were care partners for more than a decade. My care partnering role changed and evolved during that time. When it began, I lived overseas. In 2011, when it became clear she could no longer live on her own, I returned to Canada to live with her in her own home. She was relocated to a nursing home, which I came to call a “dementia jail,” on November 16, 2012. For the nex ..read more
My Alzheimer's Story
2y ago
Mom was born on September 27, 1928. If she were still alive, she would have been 94 today, September 27, 2022. On her birthday in 2015, her last one here on this earth, I visited her in jail, just as I did almost every day for several hours for four years. Here’s how I greeted ..read more
My Alzheimer's Story
3y ago
Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults died during ..read more
My Alzheimer's Story
3y ago
Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults have died ..read more
My Alzheimer's Story
3y ago
The obvious answer to “what are the benefits of patients, care partners and healthcare providers working together?” is that collaboration produces better care. What is required for good collaboration between those who care and those who are being cared for ? I believe open minds, curiosity and humility are the cornerstones for creating a good ..read more