My father had surgery on Thursday. To help pass the time, I brought my adult coloring books, which my sister, mother, and I set upon with enthusiasm. I am good at coloring–I stay inside the lines, I assemble soothing palettes, and I mix the colors to create depth and interest as best I can.
My father’s surgery was not the most stressful part of the ordeal, even though it involved general anesthesia for a 78-year-old cardiac patient. The stress came from managing my mother, who has dementia. Her diagnosis is “mild cognitive impairment,” but that is a very generous assessment. Someday, when we donate her brain to science, they will tell us what we already know: she has Alzheimer’s Disease.
Alzheimer’s involves the buildup of tau (a sticky plaque) in the brain that disrupts normal function. Memory problems are the first to manifest, but eventually these evolve into serious cognitive problems, and finally the brain forgets how to manage involuntary processes like breathing and swallowing. That’s what finally kills you. But the long, slow death is not the evil of this beast. To be brutally honest, Alzheimer’s makes you hate the person you love and then, for hating them, it makes you hate yourself. It is a perfect circle of undoing, where no one is who they are, and love is just out of reach, because you can only have the same conversation
over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over
about your dead friend or your broken heart or whether or not you’re thirsty, before you want to scream.
There are videos online that find Alzheimer’s caregivers rediscovering their loved one’s true selves. I envy them, for those moments and for the relationships they obviously used to have. Unfortunately, my mother has not settled into to some enlightened state of childlike wonder, mirth, or calm. Rather, her default setting is a cocktail of negativity, low self-worth, and paranoia that emerges when she gets frustrated–which is pretty much all the time. I think dementia strips people bare so that you can see what always drove them. In my mother’s case, her house will never be clean enough, she will never be thin enough, no one respects her, everyone is conspiring against her. These pathologies were ever-present throughout my childhood, and they shaped some of the worst parts of me. Now, for my mother, they manifest in an obsessive need to clean, such that she squirrels away important objects–shoes, keys, cell phones, the dog’s water bowl–in a never-ending quest to tidy up, because no one will love you if you have a dirty house. She doesn’t eat, she’s tiny, and her clothes hang on her, yet she is still sensitive about being too fat, because no one will love you if you’re too fat. We have to handle her, meaning we constantly function on parallel levels of reality, pretending to involve her in decisions while making them for her. When she gets wind this is happening, she lashes out–no one respects her, she is a prisoner, she’s not allowed to drive (true, but for very good reason; YOU’RE WELCOME, fellow drivers!), she hasn’t been allowed to buy new clothes for two years (patently false), she’s not allowed to leave the apartment (difficult, but we make every effort to attach her to the world), she’s dizzy but isn’t allowed to see a doctor (she has seen many doctors and is undergoing vestibular therapy), she was forced to move here (it was her idea and over my objections). Her forgetfulness has made her the perfect victim, just as she always wanted to be, where every kindness done to or for her is completely forgotten in a rage against the prison of judgment and self-doubt she locked herself in long ago.
This brings me to the surgery. After fifteen straight hours of worrying, caring, asking questions of doctors, fetching ice, procuring lunch, going over meds, fitting in the occasional work email, navigating the logistics of caring for an old sick man, and providing my mother with clothing, bathroom, food, exercise, entertainment, and the luxury of detachment from any real responsibility for what was happening, it was time to take my dad home. The trip did not go well, with bouts of vomiting and dry heaving coming from him in the passenger seat, and yelling from my mom in the backseat for “leaving” my sister–who was not supposed to be with us, but cognitively, Mom just couldn’t grasp that distinction. Park the car, go get the wheelchair, get him in the wheelchair, move the car 40 feet so the city bus doesn’t hit it, take him upstairs, get him in bed, get the dog, return the wheelchair, move the car again, walk the dog, go back upstairs, figure out meds, get the two of them to bed. I had no patience left, so I didn’t tend carefully enough to the construction of her alternate reality, because I just needed to GET IT DONE. She lost it, in a torrent of invective muttered under her breath. Then, to me, she growled, “Why don’t you show me some respect for once in your goddamn life,” in the low, scary voice she would use when I was little and acting out in a store and she would dig her fingernails into my arm until they broke the skin. Basically, having forgotten everything I did right for the previous fourteen hours, or 43 years, she was calling me a bad daughter. There was no point in responding–she forgot it all minutes later, the outburst, the surgery, everything. And besides, I really just needed a trashcan, because it was 10 PM, the dog had to be walked, and I was still holding a bag of my dad’s puke.
The coloring–I stay inside the lines, I assemble soothing palettes, and I mix the colors to create depth and interest. I am good at it.