A is for Alzheimer's.
B is for Brain.
For a long time, Alzheimer's was just a word. It was a word for an illness which tormented people in movies: usually women with doting husbands, and for some reason, usually members of higher economic brackets. (In the case of the latter, perhaps it was too heavy a plot that depicted the enormity of being a victim of both financial hardship and brain calcification.) The film characters I recall who were stricken with the disease -- the female protagonist from "The Notebook" or Tutu from "The Descendants" -- were perfectly-coiffed, well-dressed women who seemingly had nothing wrong with them besides being a tad forgetful. It was almost charming. Neither of these films showed the ugly side of Alzheimer's -- days of unwashed hair, tsunamatic outbursts of anger (in public, to boot), and, eventually, a complete cessation of self: where it's par for the course that the patient spends days in silence, moving only when prompted, incapable of making any coherent vocal communication, and usually in an incontinence product.
Sometimes, in "real-life" conversations, I would discover an acquaintance who had had a grandparent or aunt who lived with and died from Alzheimer's. "It's awful," they said. "It sucks." "What an ugly disease." Closer to the proverbial home, one friend moved a parent halfway across the continent so that she could care for him herself. But it still didn't really click. Until one day, my sister suggested it as a potential explanation for our mother's growing erratic behavior. My father and I scoffed. No way, we said. She's just emotional, she's always been emotional. She just needs new glasses, that's why her spatial judgment is impaired. She's just having a senior moment, after all, she's in her mid-sixties now.
She's just, she's just, she's just.
Turns out, she's just one of 5.3 million people in the U.S. living with Alzheimer's.
My aunt recently told me that when they were younger, she admired my mother. Before she'd had kids, my mom was brave and adventurous, traveling on her own to D.C. and Hawaii, even attending some convention where she shook hands with then President Ford. The daughter of struggling Polish immigrants, she was determined to buy her own car without help, and she did. She was picked on for her thick Polish accent, so she practiced English so fervently that by the time we were born, an accent was hardly detectable. I want so desperately to know that ambitious woman, but I realize that whatever notions I have of her, whoever she used to be, is not who she is now. Or perhaps she is, but she is buried under unfathomable leagues. That's the thing with Alzheimer's. We don't really know.
My mother's mother is almost 97 years old. As expected, her body is frail. In 2015, after two separate tumbles, she broke her ankle as well as some facial bones. It was a huge weight for her body to bear. When she was in the hospital, there were unspoken moments where we wondered if she would pull through. But grandma is a "miracle," as my dad says. I have to remind myself that she's over 75 -- if there was anyone who ever felt immortal to me, it's her. Mentally, she is astute and dynamic. In the days after her fall(s), I would take my mother to the hospital to visit her. While mom often stumbled in verbal consolations, she shone at physical affection: by holding grandma's hand, or rubbing warmth into her feet. In turn, grandma would ask careful, easy questions that she knew mom could manage answering. Observing them -- my grandmother with her faltering body, my mother with her faltering mind, and the blurred lines between roles (who was taking care of who? had they switched? switched back again?) -- left me .... Like that. Speechless.
Like most people who voluntarily spelunk into the recesses of their brains, I sometimes have peculiar conversations with myself. Here's a conclusion to which I recently came: everyone will die. Sound mind and body or not, something will take you. An accident. An infection. Cancer. There's nothing wrong with dying. And yet, I cannot wrap my head around Alzheimer's. It is not a bodily organ giving up because it is grievously tired or injured. It is not the combative will to live by an invasive foreign body, such as a bacterium or a virus or a parasite. It is not an overproduction of your own cells. Instead, what we think we know is this: it is an overproduction of proteins that build up plaque in your brain. That's it. Proteins and plaque, both of which do not even make the cut as living creatures in the eyes of science. That is what is strangling my mother's brain.
But, mortality aside. These days, my mother laughs more than I remember, though sometimes it is from nervousness. She exudes a childlike innocence. When I watch her interacting with my eight-year old niece, it's as if I'm watching two schoolgirls play instead of one. Together, they create an imaginary world of which I'm not a part. If I go to the store with them and have forgotten something before we check out, I will quickly retrieve the item in question, leaving the one who is six decades younger in charge of the other. If it is just me running errands with my mother, I have trained myself to look at her about every three seconds, or else she will wander off. Mostly, it seems that the anger phase has passed. Now, I just have to let go of whatever anger I have. I don't know how much longer we will have her for, if she will still be herself the next time that I am in Chicago. What I am learning is that for now, an air of happiness and love is what she needs.
This is where I am vehement, breathing through clenched teeth. Alzheimer's can shove it. It will never steal her capacity for love. Of that I am sure.
Thank you for posting this Monica ... she is a beautiful woman making her way through this life. Yes, it's a tough one for certain. with love
You are an amazing writer! Your account of what this disease means to you is so very well done! Your mother has raised a wonderful daughter and I am certain she knows that! She will never recover from Alzheimer's, but she has loved you from the start. On behalf of those I have known to have Alzheimer's, Thank You!
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