Welcome to The Unlikely Caregiver

My Mother Was Beautiful

My Mother Was Beautiful

I knew I’d be trading in daily bike rides and Strawberry Street in Richmond, Virginia for loud crowds and politics in the nation’s capital. It was one of those rare moments where I knew what I had to do. I knew before my dad asked me, eyes cast downward, if I would. Some would later call me heroic, a saint, an exemplary daughter. I could only wonder, “Wouldn’t you, too?” I knew I would cry if I had to tell anyone face-to-face, so I emailed a lot. I cried a lot too. Still do.

My mom started getting sick when I was 18. Our first indication was when she said, “You better thank us for those movie tickets we bought you,” to our good friends. “That was weird, that was rude, that was out of character,” we thought. Now, nine years later, I’m here, grasping her hand and pressing her head against mine, hoping this is just a bad dream, that she will come back, her frontal lobe will sprout perennial shoots like her carefully tended garden used to. Now it too stands in shambles covered in dead leaves, obscuring the life that grows beneath.

Her gardenia perfume replaced with the smell of baby powder. Her long, ivory fingers sleeping, after decades of piano concertos and high school accompaniments. My mother will always feel the same. If I close my eyes and lean my head on her shoulder, she exists there still. But today even her bright eyes are beginning to slowly fade away. Sometimes I pretend she will speak to me again, say my name, that her beautiful essence can somehow machete its way through the jungle of shrinking brain tissue, that her memory of and love for me will outweigh this dark cloud that manipulates her reality, stole her language, and made her incontinent.

My dad, older sister, and I brushed it off for a few years, attributing her idiosyncrasies to getting older or going through menopause. Then she started forgetting our names, nearly shoved my 70-year-old dad down the stairs, fought with us over hair dye, stomped her feet, tired us out. A 63-year-old woman throwing a temper tantrum over an unwashed plate is a sight to behold. There was humor somewhere–once, she smacked my boyfriend with a wooden spoon the way she did when we were children and needed a swift, strong punishment. Another time she got caught stealing Hershey bars from the local Rite Aid and the cops bashfully delivered the news to us.

I moved home to DC 3 years ago from a carefree life with best friend roommates, thrift store art of crocheted flowers, PBR in the fridge, and a favorite bar down the street. I thought I had it all, at least as much as a recent graduate with an internship could. I spent my days worrying about what bar we’d go to, who would be there, would I run into my ex? I made goals, tried to plan out my life. I made about $600 a month, just enough to pay rent in a cheap town and go out drinking once or twice a week. We ate a lot of rice and opted for no air conditioning. It was perfect and just what we needed, graduating during The Great Recession.

These days I have a slightly different slew of unanswered questions. Will this be the UTI that will kill her? Does she want volunteer strangers to sit with her? How will we pay for the funeral? Which funeral home will we use? Is this burial plot beautiful enough for her resting place? Does it matter? These questions don't stop – the search for meaning amidst loss. I am a 28-year-old with no idea what my mother wanted for her end of life, no idea how to make a choice about her brain tissue donation. Three years ago I came back here to my childhood room, my childhood home. I was broken by the pain of the slow death, this FTD, or dementia, that slowly crept into our lives, stealing my mother’s personality slivers at a time over nine years, almost ten.

My mother was beautiful. Red lips, black hair. She could command a room with her elegance. She still can. “She’s still so beautiful,” people say. But she is now shockingly pale with sagging cheeks. She keeps her mouth closed at all times, except for eating or drinking. Her eyes no longer gleam with excitement when she sees me. Her salt-and-pepper hair has thinned, no longer set in curls. She zones out on reality television and goes to bed at 7 PM in her new home, a caring facility that keeps watch over her in a way we never could. I wonder if she thinks about me, if she thinks about my dad, about my sister, about anything. I wonder if she misses us when we are too busy with our lives and can’t see her for a day or two. I often ask myself, “Does she know me?” 

She has been on and off hospice for awhile now, her body quickly ravaged by infection and then recovering on its own. She broke her hip and now cannot walk. I sat with her recently and on a whim, decided to play her favorite song, “The Prayer,” sung by Josh Groban and Celine Dion. I have not heard my mother laugh in over a year, but within moments of pressing play, I found something in that shrinking brain of hers. Her eyes lit up with recognition, she opened her mouth, and she let out the sweetest laugh I could ever imagine. 

A Helping Hand - AARP

A Helping Hand - AARP