Carolyn Birrell is the author of “Walking with Fay: My mother’s uncharted path into dementia.” She is the keynote speaker at the Alzheimer’s Association’s upcoming Journey Conference on March 25 from 9 a.m. to 4 p.m. at the Lynnwood Convention Center. 

Q: What led you to write this book?

A: I started chronicling my “Fay Stories” soon after I moved her to Idaho, mainly because their impact on me was so brutal I needed an outlet for my shell shock. I began searching for books that might guide me through the cruel escalation of senile dementia’s stages, but I mainly found medical jargon and statistics. Where were the genuine stories that would confirm my actions were those of a rational person? Who would help me normalize my feelings of guilt, grief, and even anger as the mother I knew and loved vanished before me in slow motion? Where could I find practical advice on how to counteract the accusations of abuse she heaped on me? It was then that I realized my steadily growing collection of outlandish, sometimes hilarious, and often heartbreaking stories could be monumental in helping others searching for these same answers

Q: You called them “Fay Stories.” Can you give us some examples?

A: Early on, they were simple things like constantly repeating herself and missing important dates, like her children’s birthdays. But her paranoia grew as she swore a man was watching her house, followed by her conviction that someone was breaking in at night and rearranging things while she slept. While none of it sounded likely, how could I discount what she said? She completely believed her stories and was genuinely alarmed. Things continued to “go south” with incidents like climbing into people’s cars, stealing her neighbors’ mail, and even letting a man pitch a tent in her backyard. And with each new “Story,” I was left uncertain and ill-equipped to help her.

Q: When did you realize you needed to become more involved in your mother’s care?

A: In the early stages, before I realized she had dementia, my mother still sounded perfectly reasonable most of the time. She carried on conversations with strangers and seemed quite normal. Sometimes people looked at me as if I were being overly judgmental toward my mother’s “quirkiness.” She invented stories that were dreadful but sounded believable. She grocery-shopped, drove a car, and cooked for herself. That’s how tricky dementia can be when it first becomes detectable. But when I started getting calls from her local sheriff and her local Department of Health and Human Services, I could no longer write off her changing behaviors as “the quirks of aging” and knew I had to act.

Q: How long have you been writing your story?

A: I’ve been writing it since I moved her to Idaho in 2012. Sometimes I filled chapters with her antics. Sometimes months would go by uneventfully, and I wouldn’t write – those were the times I kidded myself that her dementia wasn’t going to advance any further and I was “out the other side.” My final chapter was written in April 2020, when she passed away – right in the middle of the Covid-19 pandemic.

Along with Birrell, the event will include sessions on emergency planning, difficult conversations, and practical tips for everyday living. 

Email our team at JourneyFamilyCaregiverConf@alz.org or call 425.654.0947 for more information. 

There’s still time to register to join us on Saturday, March 25 at the Lynnwood Event Center!

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