The Terrain of the Long Road
It’s been five months since my mom died, nearly ten years since my dad passed. I’ve only started to grieve both of them, appropriate since once they decided to truly stick together (thank God for Marriage Encounter) they were rarely apart. That was well into their marriage, the first twenty-five years packed like a Molotov cocktail with vitriol and blame, the last thirty-six jammed with hand holding and secrets. Also affection, maybe love, and a charmed social appearance that fooled the world. Which meant there was no place for me until I was needed by my mother’s side after my dad died.
My mom suffered from Alzheimer’s disease, the condition from which there’s no respite and only one ultimate outcome. Long before we identified the alien craters of her brain as the vestiges of a decimating disease, I knew she also bore the scars of full throttle psychosis from childhood, a mental health condition that colored her with crazy glue and nearly destroyed me. It took years and years for me, first of hiding, then of admitting, then of sharing (too much, way too much,) to finally begin to heal. I will be seventy-years-old on Labor Day – I have only begun to understand, only begun to heal, but at least I have that.
In the 117 years since Alois Alzheimer identified the disease, they (the scientists, doctors, clinicians) have made virtually no progress in finding a cure, a prevention, or even an effective interruption in the progress of the disease. The study of why the brain constructs this weird labyrinth of reduced communicative skills and thunderous retreat to childhood has flat lined.
The newest research shows that they know next to nothing after all, and the promised cure around the bend is a long way from a pill or a plan. So much for prophecy. Instead it’s a long flat road, getting flatter as they travel, sticking needles into volunteers, taking MRI’s, prescribing pills, diets, and regimens. It’s the brain after all, the most mysterious and complex of human organs. Let us in, the scientists beg, but the brain smiles its twisted spheres and holds tight its secrets, a snarky Cheshire Cat. Drink me, it answers and grins, the key too hard to reach. It’s a long way down the rabbit hole and no easy climb back up. It hardly matters to my parents. They are both gone.
Elisabeth Kubler Ross identified five stages of grief at the loss of a loved one. They have nothing to do with me. I’m not following her order. I’m wallowing in all of them at once and more that she never mentioned. Because part of the process of grief is coming to terms with the history of yourself and the person who died.
When my father died, I had no opportunity to grieve. True grieving is, after all, a luxury. There must be time to sit on the sofa and cry all night long, to wander the back alleys looking for something more dangerous than what you’re already enduring, to drink yourself into a stupor and fall naked into someone’s bed, to kneel at a grave and keen the loss. I didn’t have that time. I had a mother whose plunge into Alzheimer’s made rubble of my time. Of me. She needed me as her legal advocate, her appointment transportation, her entertainment committee, her financial warrior, and sometimes her confidante. For while I had no time, she had all the time.
Nothing pressed on mom to get things done. Paying rent, shopping for toothpaste, washing blouses, making dinner, even bathroom assistance – it was all provided. Since the progress of her illness had been identified by her physician as much more severe than I’d realized, (remember, I said my parents had crafted a social appearance to fool the world) I’d been forced to place her in a memory care residence. Not now will I discuss the emotional massacre of removing someone from the privacy and luxury of their own home to an institution, no matter how much safer it is for them. Understand, please, that it robbed me of years of sleep, loaded me with stress as thick and dangerous as the carbs and salt in a family size pizza, deprived me of common sense decision making for my own life, and saddled me with nightmares that segued into daymares – as if I could sleep at all. That was how my time was spent – worrying, second guessing, researching, and driving all over the place because of responsibilities to mom, to my family, and to the trust that paid her expenses.
She spent her time mulling as much as her disease allowed; otherwise she allowed me to function for her. I made myself present in her life, visiting four to five times a week, four to six hours a visit, doing everything I could to make her believe that her life hadn’t changed since her husband had died. A person with Alzheimer’s cannot grieve. They cannot process information or internalize new experiences and move on, they cannot abide by Elisabeth Kubler Ross’ routine. They cannot remember. My mom asked every day when he was coming back, and every time I tried to explain and provide a spiritual reference for comfort. It didn’t stick. So she’d ask again and I’d explain again or try to distract her or simply moan.
And this is where I stand today. Finally sobbing over the deaths of my parents. For while they did not die on the same day, they both died for me when my mom passed on March 30, 2018.
There is no cure around the bend for Alzheimer’s, only the deathly flatness of the road, like farmland tilled and plowed for hundreds of years, land made flatter and flatter as crop after crop is planted and harvested. Still growing tomatoes or corn or strawberries. Still researching and testing with no viable results.
It’s a long road ahead of me, full of trenches, crumbled surfaces, clutching mud. I face a perilous journey before I am fully able to forgive, apologize, move forward, to lay my head on their graves and know it will be OK. I am grieving now.
Note: I’ve written a novel, Where Did Mama Go? about the devastation Alzheimer’s disease inflicts on families. It’s in the process of being edited, and then I’ll start querying for an agent to represent my work. My credentials for writing this story are eighteen years of assisting my mom through the labyrinth of this illness.
Black and white image of grief courtesy CCO Public Domain