Caregiver's Progress compares the challenges of dementia care to a pilgrimage through difficult landscapes. Together, we learn to manage physical and cognitive energy to stay within your loved one’s limits. This leads to more playful and imaginative conversations that help conserve energy and lift the emotional load of caregivers.
Relearning to play helps manage stress and engage with loved ones meaningfully. Acceptance of changing cognitive abilities preserves the person's self-identity. Through energy management and playful engagement, caregivers can create a playful and wonder-filled environment for loved ones with dementia.
Caregiver Burden is perhaps the most challenging and complex issue to address in our Caregiving Journey. Burdens into Love starts with an ancient parable from Northern India that shows us how, after caring for another, a deadly gift can transform into something precious.
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The narrative highlights the importance of our caregiving story and the challenges faced by caregivers who lack access to resources and support. It highlights the negative impact of stress and burden on the relationship between caregivers and their loved ones, resulting in a toxic dynamic and a decline in holistic care. The story emphasizes the need to find the 'Path to Awe' and love as transformative forces that can lift caregiver burdens.
Mark Jenkins and his mother, Betty, share their experiences with dementia care. Mark advocates for caregivers and better elder care systems, while Betty's condition inspires him to find ways to bring joy, love, awe, and wonder into the lives of those with dementia.
Mark believes that caregivers must focus on the beauty of the world around them and embrace a positive journey with dementia care, where a diagnosis is seen as a door opening to the possibility of experiencing more Awe and Wonder for both the caregiver and their loved one.
Mark Jenkins shares his family's experience with Alzheimer's dementia through the stories of his aunt, Philly, and mother, Betty. Philly's illness and how her husband's desperation caused great pain. After Philly's death, the author's mother began showing signs of the disease.
Over a period of seven years, Mark, the primary caregiver, ensured that everyone avoided using the term Alzheimer's in her presence, striving for narrative freedom and a new path. They wanted to co-create a narrative that led to beauty, wonder, and personhood. They succeeded in their quest and walked a unique path right to the end.
Creative Expression
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My goal is to inspire creative approaches to caring for loved ones with Alzheimer's dementia. If you find these videos helpful, please let me know. And if you have a story to share, I'd love to hear it. With your support, I can continue to create more videos in the About Caring Docuseries.
Testimonials
“I was Betty Jenkins' primary nurse through the last several months of her life. I can tell you that Mark's approach to his mom's dementia was unique and refreshing. He managed to see past the dementia to the person beyond the illness. I encouraged him wholeheartedly to consider teaching dementia care because I was so impressed with his empathy and generosity toward his mom. He was swimming upstream and had to defend his care for Betty against all the preconceived and conventional attitudes of the healthcare community and popular cultural beliefs. He was fearless in defending his mom and in making sure she was cared for as a whole and unique person. It was not always easy.
Mark has many more skills beyond the care he gave his mom. He is an accomplished writer and a gifted storyteller and has an extensive resume as a speaker and in teaching team building.
I am so grateful to have been a part of the team that Mark built to care for Betty. It was an experience I will always remember.”
-Sue Hutton, RN, SRT Medstaff (Nurse for 47 years and for the last 20 years Sue has specialized in palliative care)
“I can attest to you that I have known this woman Betty Jenkins over the past five years and that she has lived a full and rewarding life right up to the very end of two major illnesses, Alzheimer’s Dementia and Bowel Cancer. Even last week, the quality of her life was still very good. This can only be attributed to the quality of Holistic Care that she received.”
- Dr. Patterson, Head of the Palliative Care Division at Markham Stouffville
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“Mark’s presentation was both powerful and gentle, reaching in to all our emotions and showing us that it is possible not to fear Alzheimer’s and it can be embraced in love.
Hospice Happenings - June 2018
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"First, thank you for sharing your story at the conference on Monday. I was deeply touched by the story of your journey with your mom. You helped me re-think what quality of life can look like, and from the feedback from others there, it did the same for them."
-Ruby Young - Office Administrator Hospice Huronia
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