My uncle’s call was unexpected.
He’d cut ties with my mother the year before, explaining she was too difficult; he could no longer be disappointed by their inability to rekindle a relationship as adults. Despite his proclaimed fraternal divorce, something had compelled him to seek her out again. What he found prompted a plea to me: Help her. He tearfully related that she was unhinged, wearing her nightgown in the middle of the day, weighing about 90 pounds. He sent a blurry shot of a cluttered space in her living room. My sister and I convinced ourselves that undiagnosed bipolar disorder had finally overwhelmed her.
I did not suspect dementia until I literally tripped over it.
A week later, my mom and I pushed through old magazines behind her door to gain entry. Next, I followed a narrow trail of visible floor to the living room. Boxes and boxes erupting with paper were stacked haphazardly on nearly every inch of space next to hats, linens and other unnecessary items. My uncle’s photo had been of the tidiest spot. I felt like I had dropped into a live game of Jenga; touching something might set off a toppling frenzy. Her tub was serving as a closet — full of cleaning supplies, mops, nylons, clothes and a 25-foot plumbing snake. The sink didn’t drain. I walked into the area that once served as a kitchen so she wouldn’t see me panic. Pulling spoiled items out of the fridge, I wondered,which came first, the milk past due or the woman who didn’t know the date?
As I unearthed unpaid bills and answered her repetitive questions, a clearer picture came into focus. How could I not have known?
Though not technically estranged, our relationship was tenuous at best, stitched together only by threads of my guilt and desire not to be someone who had no contact with her mother. She had driven my father, my sister, her siblings and her friends away decades ago. She wouldn’t formally be diagnosed with Alzheimer’s disease for several months until other possibilities were eliminated, but I began working under the assumption that seeds beyond manic depression had taken root in her 73-year-old brain.
I spent the next 12 months repairing neglect. I completed nine years of past due state and federal taxes, reinstated lapsed insurance, recovered money lost in the Bernie Madoff Ponzi scheme, and coordinated my mom’s relocation from New York to Virginia (including a biohazard team’s disposal of over 8,000 pounds of the waste that had engulfed her small apartment). Between five surgeries, a near-death lung infection and several teeth traumas, I attended over 50 medical and 30 dental appointments.
Instead of gratitude, I received accusations: I was stealing her money, treating her as an infant, keeping her locked up. I yelled back initially, then cursed myself for being frustrated. I was educated enough with dementia to know the disease distorts reality, but so much of her vitriol was what she had always spewed at me, I couldn’t ignore it all. I felt torn between my duty to aid in her rehabilitation and my desire to enjoy time with my husband and three kids.
Once in assisted living and on the right medications, her cognition and physical health improved tenfold. I could have celebrated, but I wasn’t feeling it. I yearned to be given the gift that others who care for parents with Alzheimer’s mention. The sense of fulfillment for returning the love and care received as a child to a loving parent. I had been raised in an anxiety-ridden environment full of arguments where emotional detachment became my self-defense mechanism. I felt nothing.
And yet. One evening as I cuddled with my 8-year-old daughter, a memory popped to mind. Sitting in an ugly, vinyl recliner my mother would calmly tell “When I was a little girl” bedtime stories. I tried it out with Maisy, and she was immediately mesmerized. Those tender recollections had been drowned out by 30 years of nasty words. My brain was awakening my heart to the realization that love doesn’t develop simply because we call ourselves mother and child. I would need to continually forge positive bonds with my kids.
Those who see Alzheimer’s as a gift have squirted whipped cream on a steaming pile of horse manure and called it a chocolate sundae. I enviously applaud their saccharine melody, but cannot join their chorus.
I manage my mom’s care now because I can, not because I expect appreciation. Because my children and I fuel her being. But most selfishly, I care for my mom because I hope it will make me a better one to my own children.
A Gift? I'd Return My Mom's Alzheimer's If I Could
The real reason I feel nothing.
My uncle’s call was unexpected.