Erin’s Story
Hi, my name is Erin, and I love talking about dementia.
Growing up as an only child I often found myself the only kid in a sea of adults. Looking back, that made me deeply sentimental for my parents’ and grandparents’ generations, such that now as an adult I cherish my Grandma Delores’ smudgy recipe cards; I can’t hear Ol’ Blue Eyes without picturing my Grandma Phreda singing every verse with gusto; and I feel proud when a fellow Seattleite knew my Grandfather Joel, confirming his name still carries clout. When I was 10 my maternal Grandpa Floyd died. To process my grief, I wrote a story (that was later published) about how panda bears grieve the loss of an elder bear: they let their tears flow, pooling into mud at their feet. They scoop up the mud and rub it into their trademark black patches. This way, by my folklore, pandas can carry the memory of their loved ones in their fur coats. The elders in my family are all gone, but they “live in my fur” and make me love working with older adults.
Like so many in my field, working in eldercare wasn’t part of my life plan; you might say I didn’t know I was looking until I found it. In my early twenties a friend suggested that I apply for a concierge position in a senior living community, because, as they said, “I think you have the heart for it.” Eight years and over a thousand residents later, and I finally know what they meant: people who do this work don’t do it for the glory, the perks, or the juicy paycheck; we do it for the people in our care that we just can’t help but fall in love with.
Since so many of the people in my care were living with dementia, eventually a mix of curiosity, dedication, and a wee bit of desperation drove me to watch dementia training videos on YouTube late at night (my version of binging Netflix). I quickly learned, as with any disease, when you don’t understand dementia or how it affects people, it’s nearly impossible to give good care. YouTube led me to Teepa Snow and her organization, Positive Approach to Care, to Dementia Friends and advocacy opportunities with the Alzheimer’s Association, to mentors and support groups that confirmed the need for people who care, and finally to becoming a Dementia Educator myself.
Understanding how dementia pulls the levers and dials in the brain was empowering. As I became more dementia-aware, I changed how I designed activities so they were appropriate and meaningful for my residents; I learned how to celebrate the skills they had left and provide support where skills were lost; and I found my voice to advocate for my residents being people living with a disease, not just a disease. I had access to empathizing with my residents, get in their world, not take myself so seriously, and shift my approach so they could shine.
I believe it is a kindness to enter their world, exactly as it is and as it isn’t. One memory I’ll never forget: the day in memory care when Ms. D. was welcoming her newborn child—highly unlikely for a woman of her vintage but the changes in her brain making it highly real for her. Wearing her special-occasion-red-lipstick and cradling a baby doll in her lap, Ms. D. enlisted the entire memory care to fold the baby clothes, puree the food, and position the highchair ‘just so’ beside her wheelchair’s spot at the dining table. She was beaming. Others will thrilled to be needed and contributed however they could. If a staff member couldn’t get on board, they were kindly invited to come back later. We could have told that 97-year-old woman that expecting a newborn at her age is ridiculous, but for one whimsical afternoon, she got to be a dedicated, loving mother again, one of her greatest prides in life. Who were we to refuse her that joy?
Now as a Positive Approach to Care® Certified Independent Trainer, I draw from my experience in senior living to empower families and care partners with the dementia awareness that empowered me to care with compassion, curiosity, and creativity! After all, dementia is permanent and it changes everything over time, so we need to change too in order to be supportive, effective, and continue to share meaningful connections with loved ones. I am honored to bring my passion for dementia education—with a touch of Grandma Phreda’s gusto—to The Creative Dementia Collective, where we believe that people living with dementia are people first, that normalizing dementia is a critical step towards a dementia-positive culture, and that all people deserve access to creative choices for care!
