It's another return trip -- three years' worth -- from weekend care for my mother, Peg, who suffers from moderate Alzheimer's. My hair is clipped up haphazardly, I haven't showered in two days, yet I'm not the family member who has dementia. I'm sitting in the bumper-to-bumper circus that is I-95, north of Boston, on a Sunday night. It's my weekly ritual commute from my childhood home in Newburyport, and I admit I sometimes feel a little sorry for myself. My younger siblings both passed away within a few years of my father's death so it's just me.
Muttering to myself as I cleaned my mother's bathroom, I realized that if I don't find the silver lining in her Alzheimer's, I'll totally lose my mind. Sometimes I resent missing out on a friend's birthday party or being able to catch up on laundry on a Saturday, but I'm very fortunate to have found three wonderful women to help care for my mother while I'm at work.
My longest work day is a piece of cake compared to getting Peg out of adult diapers or accepting that I can't shower when she frets about me using too much water. I think often about the folks who are on duty seven days a week, and I can scarcely imagine their stress. These are my heroes among the silent army of caregivers for the estimated 5.6 million Americans who suffer from this terrible disease. Everyone who has cared for someone with Alzheimer's knows it's a rocky road, especially in the later stages when patience is tested while trying to extend dignity to a person who no longer recognizes their loved ones.
It's rare to talk to anyone these days who doesn't know someone dealing with this debilitating condition. Like my friends who face Alzheimer's in their families, I sometimes have to leave the room for a good cry after I've fed Peg her dinner. But on this Sunday night, sitting in her pink leopard pajamas, Peg giggled with abandon while she watched a silly dog in a commercial. As I head back to the highway for my trip home, I've rolled down the car windows to let my hair blow wild in the wind once the traffic speeds up. I'm smiling and blasting my favorite song replete with harmonica and mandolin.
In a strange twist of fate, Alzheimer's has given my mother the lightness of spirit and ease of laughter that eluded her before her brain began to deteriorate. Others have told me that once dementia took hold of their loved one, it flipped their personalities to the opposite temperament -- like the sweet grandparent who turned ornery, violent, and uncontrollable in late-stage Alzheimer's. So in a sense I'm lucky.
Peg was always a worrier, a child of the Great Depression. Her mother had died in childbirth and her father worked as an itinerant gardener. Peg spent her teen years in foster homes. All she ever wanted was a family and a home of her own. She was bright and worked hard, winning a scholarship to nursing school where she met and married my father, a brilliant and ambitious young man, yet not the Prince Charming she was hoping for. At a time when divorce was seldom an option, Peg lived in anguish for much of their 58 years of marriage. Not surprisingly, when I was growing up, she was often miserable and angry.
The unexpected blessing in memory loss is that Peg now seems happy and freed from her painful past. At 82, she lives completely in the present, lighting up at the sight of cardinals at her bird feeder or marveling at a clear blue sky. She savors every bite of her egg salad sandwich as if it were the finest gourmet meal, and thanks me profusely for a simple lunch: "Yum, this is so good." Another bite, "Yum, this is so good." She laughs easily and talks openly about her crush on Dr. Oz. Any cover photo of the handsome doctor ends up in the coveted stack right next to her night light. Going through her women's magazines, she clips cookie recipes even though she hasn't used her oven in five years. She can't remember what day it is, yet she has hope for the future. Her eyes are sometimes vacant but her spirit is joyful.
I wonder if this is Peg's authentic personality, the one that might have blossomed under a different set of life circumstances. Seeing glimpses of what might have been helps me understand that my mother did the best she could. Now a different woman from the one I grew up with, she's warm, she's funny, and she's grateful to be in her own home with her beloved golden retriever at her feet. An added bonus is that my two children now enjoy a grandma who loves them unconditionally and is easy to love back. While I know that new challenges lie ahead, my mother is teaching us all lessons about rejoicing in small, but precious moments. I'll be right there with her in the celebration.
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