“Walking With Fay,” a Dementia Caregiving Journey

In this excerpt from her book “Walking with Fay,” Carolyn Birrell tells the story of caring for her mother with dementia

Carolyn Birrell shares the heartwarming and heartbreaking story of caring for her mother Fay through the stages of dementia. Their journey illustrates the frustration, exhaustion, love, fear, and regret with which dementia caregivers are all too familiar. In an excerpt from her book, “Walking with Fay: My Mother’s Uncharted Path into Dementia,” Carolyn introduces us to Fay and brings us along as she becomes increasingly aware of Fay’s dementia symptoms.

 

Chapter 1: She Was Just Getting Old

Year One – Stage 2 (Age Associated Memory Impairment)

“Morning ma’am, this is Lieutenant Davey from Franklin County Sheriff’s Department. I’m calling about your mother.” 

It was 5am Idaho time, too early for my alarm clock and birds, really. The room was black, and I’d just been jarred awake by the insistent shrill of my phone, setting every nerve in my body on high alert. 

“We’re real worried about her. Been getting calls about her driving on the wrong side of the road, cuttin’ people off, that sort a thing.” He began recounting each of the complaints he’d recently received as I blinked my eyes into focus and forced myself to concentrate. 

I cleared my throat, “Well, could you pull her over next time? Maybe give her a ticket? Can you take away her license or something?” 

“No ma’am. Can’t do that until I see her do it myself. I was hopin’ you could talk to her.” 

Talk to her? I lived 3,000 miles away from my mother’s rural north Georgia town where she lived by herself, a fiercely independent and very proud 79-year-old. I knew exactly how that call from me would be received. “Hey Mom, I heard you’ve been driving erratically these days. Seems you’re causing a lot of concern around town. Maybe it’s time to give up your driver’s license. Where did I hear that? Oh, from your town sheriff – who heard it from your friends and neighbors.” It took me three short seconds to consider the repercussions of making a call like that, leaving no doubt in my mind that things were just going to have to work themselves out without my help. 

I thanked the lieutenant, took his number, and promised to broach the subject with my mother, which I absolutely did not do later that morning during our daily phone call.

 

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My mom and dad moved to Georgia after my dad retired from a life of plumbing in western New York where I was raised. Their house was paid off and their three kids were grown. They were entering their golden years, but New York state property taxes and astronomical winter heating bills made it hard to budget on Dad’s modest Social Security checks. I’d been living in Atlanta for several years and reporting back to them how much I loved it, so after a few holiday visits (they couldn’t believe they were wearing t-shirts in the backyard on Christmas morning!), they focused their attentions south. 

They found their perfect little house – a brick rancher in North Georgia, “Not too close to that big city you moved to,” on a country acre just a couple hours’ drive from me. It was 1992. Their new town boasted a hospital, grocery store, and a dozen churches. Dad tinkered in his wood shop out back and Mom packed her garden with vegetables. They planted two fig trees and were busy making friends in their new congregation. They marveled at the azaleas in bloom each spring when they expected snow. And just eight years later, Dad became sick and died, leaving Mom suddenly alone. 

Overnight, I became “Keeper of the Mother,” managing Saturday trips to her house while trying to live my own life two hours away. My sister Roxanne still lived in New York and could only manage annual visits, and even though my brother Dale lived in Atlanta near me, he was never short of reasons why he rarely made a trip to see her. I was 35, a busy real estate agent partnered with my husband, Sam, and ill prepared to take on my new post. 

The full day it took to drive there, visit, and circle back home didn’t leave much to the weekend, and the balancing act was grueling. We’d make an early start of it, Sam driving and me with a stack of client files on my lap, making phone calls. We’d try not to rush through lunch and then begin hinting it was time to leave around 3pm. By the time we pulled into our driveway, the day was over and we each felt it. 

Maybe she didn’t need me to drop in on her every week, and maybe I made more of it than was needed, but I went. A missed Saturday left me squarely seated between relief and anxiety. I needed the break, but I anguished over the image I easily conjured of my mother wandering through every room in her house, alone and missing her family.

 

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Mom did seem to bounce back quickly after Dad died. Happier, maybe; liberated from forty-five years of cooking and cleaning for a husband she didn’t do much with anymore but bicker. Our daily phone calls were filled with stories of her working in her garden and sharing tomatoes with friends. A stray cat had shown up recently and made his home in her carport. She named him Ghost. He was an excellent mouser, and his daily escapades became a regular topic of conversation. She’d started going back to church and recounted all the goings-on of her neighbors she spotted during her morning walks. She never missed a day, not even when it rained. “That’s what umbrellas are for.” 

Sam and I had been playing with the idea of leaving the city and simplifying our lives a few years before my father passed away. We were flying high above the real estate bubble of the 90s and the frenetic lifestyle we’d created for ourselves was taking its toll on our marriage. We’d even started looking at properties in rural areas of the northwest that were close enough to culture and entertainment yet still buffered from a crazy-large population like Atlanta. 

Those plans ground to a halt when my dad died. How could I announce to my mother that I was thinking about leaving her alone so soon afterward? I couldn’t imagine how she’d survive on her own without us nearby to swoop in and handle things when she needed, so we shelved that dream and let a few more years pass. 

That time came, though, and I remember the day I told her we were moving. We’d stumbled upon a piece of property in North Idaho on the internet, flew out to take a look, and instantly fell in love with the area. After several more scouting trips disguised as vacations, we decided it was time to head out West. All I had to do was tell Fay. 

I drove to her house by myself that weekend to deliver the news. She was my mother and she was alone, so I wanted to proceed as gently with her as I could. Visions of tears and pleas to stay had been in my head the entire drive there, and I was filled with dread by the time I pulled into her driveway. She surprised me, though. She let me finish my well-rehearsed monologue about how over-worked we were, how dangerously stressed our marriage was from the amount of business we took on, and how we envisioned a slower pace in the beautiful mountain region of the great Northwest. She didn’t seem the least bit upset or anxious that her youngest, closest daughter was deserting her. 

She’d be fine, she said. She had her church and her friends. She was content. “Go to Idaho.” I left her that day with my mind in a fog. I’d worked myself up for a terrible confrontation and instead I pulled out of her driveway with full consent and a to-go container of leftovers. I replayed our conversation on the drive home and reassured myself she was well-adjusted and capable, but my guilt and apprehension were in full swing. It crushed me to leave her behind, but that day came, and I did leave. 

The distance between us didn’t feel as vast as I’d anticipated, and we developed a comfortable routine almost immediately. She’d get in from her morning walks and watch the clock until it struck 10am to dial me. Her calls became my 7am alarm, beginning with tales from her most recent walking escapade as I shuffled into the kitchen to grind beans in spurts so I wouldn’t drown her out. Then, settled on the couch with a cup of coffee in my lap, we’d fill an hour with any number of topics. I don’t remember exactly when I began noticing her story loops, but I do remember how I responded. 

“Mom! How many times are you going to repeat that same story about your bank teller? You’ve told it to me three times in this conversation!” 

She never missed a beat when I brought it to her attention, countering, “I know I did, but it was funny!” And she never seemed hurt by my retort. I’d hang up feeling a little unsettled, not as much by the impatience I hadn’t yet learned to temper, but more the fact that this was happening in the first place. And then I’d just as quickly remind myself she was only getting quirky. It was 2006, and little did I know then, this was just the beginning of a long span of years I was about to embark on with my mother. 

I’d laugh about it with friends, and we’d joke that we could tell we were getting old by the way we’d begun comparing the bizarre things our parents did. The thought of dementia truly never occurred to me. Her stories were more like tracks set on repeat every two or three minutes. She was just getting old. She’d tell me about the pan of lasagna she made for Jerry, her neighbor whose wife left him. She talked about her daily walks and the woman who waved to her from the window whenever she passed her house down the street – a single mother who had her hands full raising two kids by herself who should just find herself a good man to take care of her. She may have retold these stories half a dozen times in one call, and it may have driven me crazy, but I held tight to my belief that she was only doing what all seniors do. 

It wasn’t until she started mentioning the man at the end of the driveway who was watching her house at night that I knew I had to stop pretending everything was fine. She said she knew he’d been there from the cigarette butts she found every morning when she headed out on her walk and swore she counted a few more each day. And that marked a point on the timeline when my mother’s curious personality changes began to worsen.

 

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Guest contributor: Carolyn Birrell spent eight years caring for her mother Fay while learning “all things dementia.” It was during that time that she started chronicling Fay’s stories, writing things down initially to make sense of her early-stage dementia and the terrifying behaviors that came with it. Somewhere along the way she realized that she’d been compiling the very stories she had searched for in the early days, and that she might have found a way to help others who are feeling lost like she was. These stories evolved into her book “Walking with Fay: My Mother’s Uncharted Path into Dementia

 

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