While dementia may rob people of many of their abilities, it doesn’t take away the importance of making connections, says Newmarket resident Deb Jay Thomas whose mom lives with dementia.
Thomas, who wrote My Mom as a Ruby in the Alzheimer Society of York Region’s book, Hearts Linked by Courage, Honouring Loved Ones and Caregivers of the Dementia Journey, said while family members may not be able to see the person behind the disease, he or she is still there, waiting for connection.
“I wanted to let people know that there are ways to connect, to give love, and to see the return of their loved one, if only momentarily. I wanted them to know that their loved one waits for them inside the shell and that meaningful moments are life giving for both parties.”
In her story, Thomas talks about how after her mom’s dementia diagnosis, she researched everything she could about the disease, eventually finding dementia expert Teepa Snow and her Positive Approach to Care (PAC) ®. This method of dementia care encourages people to focus on what GEMS® remain at each stage of the disease.
Thomas, who is PAC certified and teaches others to use this method, said she wanted to share her story to bring awareness of dementia, particularly those living in the later stages, which is often misunderstood.
“People living in the later stages are seen as mere husks of the person they once were... I wanted to share Mom’s story at this stage because she is still there – her kindness and giving nature emerge when she takes my hands to her lips to give a soft kiss. She lets me know that she recognizes my spirit, if not my masked face, and enjoys our connection.”
While Thomas’s story flowed from her the moment she created the opening line, she worries it wasn’t ‘powerful or compelling enough’, nor did it show her mom is still there.
“I wish I could ensure that my readers look into the Positive Approach to Care and uncover the knowledge, skills and strategies that can help them in their daily interactions and support of their loves ones who may be living with dementia.”
Thomas’ mom, Wilda May Scott, lives at Cedarvale Lodge Retirement and Care Community in Keswick. She is 96 and other than dementia, and a medication she is on for her glaucoma, she is healthy. COVID-19, however, has certainly diminished her abilities.
“Mom had lost a bit of skill and substance, she was no longer as visually curious, no longer reaching out to feel textures and hold objects; she was much more inside herself than when the doors closed in mid-March.”
Scott is considered at the ‘Ruby’ stage of dementia, Thomas said. She has lost most of her skills, rarely speaks and she can go for days without opening her eyes.
“The medical world would call this the late profound dementia, time to keep her comfortable until her life is done.”
The time was perfect for Thomas to share her mom’s story.
“Our society needs to know how we can support a person living with dementia in positive ways that enable them to enjoy life, to engage and connect with us, and to find meaning and value. Our rapidly aging population and the epidemic rise in dementia and Alzheimer’s disease, predicts the eventuality that more of us will know or love someone living with dementia, or heaven forbid, acquire a dementia ourselves. Dementia is a disease that cannot be ignored any longer,” Thomas said.
She said dementia is a progressive disease that will ultimately kill the person, but by sharing this story, Thomas said she hopes to give the reader a glimpse of the progression of the disease and how people can offer love and support throughout the journey.
Ultimately, this story – and the 23 others – shows people aren’t alone.
“There may not be a story that reflects the journey our loved one living with dementia is taking, since everyone is so different. However, these stories may offer a kernel to grasp that resonates as the stories share the humanity and compassion of caregivers. Like a trusted friend, the similarities of their story with our own can help us to feel that we are not alone, we can persevere.”
Hearts Linked by Courage offers stories from caregivers at all stages of the dementia journey. The book costs $18.95 plus shipping and handling and was funded by the Carswell Family Foundation and published by I C Publishing. All money from the sale of the book goes to support programs and services from the Alzheimer Society of York Region.
The Newmarket Public Library has purchased Hearts Linked by Courage and it is now in circulation. To purchase a copy, visit http://bit.ly/ASYorkBook
Teepa Snow was a guest speaker at three AS York webinars. To see the recordings for each, email firstname.lastname@example.org . You will receive a bounce back with a link and the password for each recording.
David Troxel, who helped create the Best Friends Approach to dementia care, is coming to speak March 5. Learn more, visit https://alzheimer.ca/york/en/