Spokesperson Louise Penny shares her story.
Our pain and dementia knowledge mobilization team welcomes Louise Penny as a strong supporter for our #SeePainMoreClearly campaign to improve pain assessment and management for people with dementia. Louise Penny is a Canadian best-selling author of mystery novels. Over the past 2 decades, Louise has penned sixteen novels, most of which are centred on the work of her main character, the francophone Chief Inspector Armand Gamache . She is a #1 New York Times and Globe & Mail best selling author and a four-time winner of the Agatha Christie Award for mystery. She is also a member of the Order of Canada.
Louise’s husband, Michael Whitehead, former director of hematology at the Montreal Children’s Hospital and leading childhood cancer researcher, was diagnosed with dementia in 2013 and passed away at their home in September 2016.
This is their story
There were initial clues that there was something wrong, even before the diagnosis. Michael sometimes had difficulty counting and using numbers or was confused about the time. Even more concerning were the changes in his personality and in the way that he related to Louise:
“If I said I was sick, he would ignore me. Or if I said something big had happened – something great – he wouldn’t celebrate, or wouldn’t be happy,” she explained in an interview with Alzlive. “He appeared not to care anymore. It seemed to be a choice and it felt quite hurtful. And personal. It felt like he was distancing himself from me for reasons I couldn’t understand.”
Michael underwent a series of diagnostic tests and eventually, a diagnosis was made.
Following his diagnosis, Michael and Louise decided to share their story with the public. In the Alzlive interview, Louise explained that “overcoming the stigma of Alzheimer’s and dementia is the first step towards better care.” Michael and Louise spoke openly about the stigma that comes with a diagnosis of dementia and its impact on everyone affected by this condition and their extended family networks. “I love him,” she said in the interview “That is fundamental. I love the man and I am happy to do whatever is necessary for a stable future. Despite the challenges of caregiving, Louise discovered unique joys as she encouraged Michael to maximize his independence and use his abilities. She learned to accept who Michael was every day instead of looking back and mourning the man that he used to be. She knew that none of this was Michael’s choice.
The Caregiver Journey
It is vitally important for the dementia community to be able to assess pain in dementia patients who are unable to express verbally that they are suffering from physical pain. While validated pain assessment tools for dementia are available, they are not widely used in Canadian long-term care settings. Louise explains that she and Michael were not provided with adequate medical options when Michael received this devastating diagnosis. She asserts that our healthcare system in Canada is poorly equipped to handle the immense challenges brought by dementia, particularly in light of our ageing population and an increasing number of people with this condition.
As a past dementia caregiver, Louise recognizes the immense challenges that people with dementia who have difficulty communicating or speaking have when the pain is caused by injury, infection or illness. For example, if a nonverbal dementia patient develops a tooth abscess, they may not be able to alert their caregivers that they need pain relief and treatment.
Louise is joining forces with our research team to share best practises in assessing pain in dementia with family members, caregivers, health professionals, long-term care home managers and policymakers. We are working hard together to ensure that dementia patients are not suffering from pain in silence and are able to have optimal quality-of-life during the final stages of their lives.
"The work being done by Dr. Hadjistavropoulos and his team is so very important in identifying pain in people with dementia. And relieving suffering. They have my admiration, my gratitude. My full support.” - Louise Penny, Award-winning Canadian author.
After a brave and dignified battle with dementia, Michael died on September 18, 2016. He was 82. A brilliant scientist, Michael made major contributions to treatments for childhood leukemia. His loved ones will remember him “for his kindness, his courage, his twinkling blue eyes, his bowties. And the great love he felt and gave.”
The #SeePainMoreClearly team is extremely grateful to Louise for sharing her and Michael's story and for her support of our #SeePainMoreClearly campaign.
Michael and his rescue dog Bishop
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How You Can Help?
Would you like to share your thoughts on our See Pain More Clearly initiative and the use of social media to mobilize knowledge about pain in dementia?
We are looking for participants to participate in a study to evaluate the effectiveness of the #seepainmoreclearly social media initiative to mobilize knowledge about pain in dementia.