Life, Death, and On Being the Jam Filling In-between
I had an unusual childhood, I realize now. It was an unusual childhood in the best of ways. For example, my mother served juice once a day in actual little juice glasses at breakfast. On eggs-and-toast days (Tuesdays and Thursdays, every week), we pulled a miniature jelly spoon from a similarly miniature decorative glass jelly spoon vase with which to spoon up each individual flavor of the 2-3 different kinds of jellies and jams there would be on the table for our toast. The jams and jellies (and toast, for that matter) all homemade.
My father worked as a chemist in the foothills of the Colorado Rocky Mountains, a short drive from our modest brick home in the then-outskirts of Denver. They chose the house for its yard. “The yard” was unusually large for the size of its accompanying (very small) 2 bedroom mid-century brick fixer-upper house (which my parents had intended to remodel) and included a long, winding dirt driveway on which we would learn to ride our bikes, a small area of pine-forested “woods” in which my brother and I would come up with endless mythical adventures, and room for a garden large enough to supply most of our vegetables. My mother took her retirement from working as a Registered Nurse early, to stay at home forever after with my older brother and me. She often wore belted 1950s-esque shirtdresses (hand-sewn and tailored to perfection) to church where she and my dad both taught Sunday School. They taught Sunday School for decades; even before they had my brother and me in their classes.
My dad began “throwing his back out” when I was in elementary school. He started seeing a chiropractor who prescribed various strengthening exercises. It wasn’t very long before he seemed to lose his balance occasionally, for no good reason. He began leaning on things. The walls became black where my dad would grab and lean onto them to navigate through our house once he began having to use one of his hands to help pick up his own legs to walk—one, then the other, then the other, then the other…always leaning on a wall, or on imperceptibly growing piles of my mother’s clutter.
My dad was a very tall man. When he would topple into things in our very small home, it was as though a skyscraper had been felled by the wind, leaving a pile of rubble in its place. Twice, it was the Christmas tree. Once, he fell into the soft, very old drywall of our one bathroom; the bathroom my parents had wanted so badly to remodel. Instead, my mother found herself helping to lift my father up from and out of the gaping hole where he lay—covered in 1960s plaster. I’m still surprised he didn’t go all the way through the wall into my bedroom. We were being supported as a family by Long-Term Disability Insurance coverage by this point, so my parents bandaged the shower wall with some duct tape and a roll of aluminum foil and we went on with our lives.
Years went by before my dad was finally handed a fairly certain and conclusive diagnosis, after undergoing myriad diagnostic treatments including surgery to fuse vertebrae. Hereditary Spastic Paraplegia: a relatively understudied, mysterious neurological disorder which causes stiffness, pain, and eventually renders the individual paralyzed in one or more of their limbs. My dad has gone on to suffer from end-stage kidney failure, due to his body’s inability to process all of the medications he was on for the spasticity and paraplegia because he was so sedentary from the very same spastic paraplegia. He began thrice-weekly dialysis a few months after my first child was born, following a harrowing trip to the emergency room and an extended stay in the ICU.
My mother began exhibiting obvious signs of dementia once we’d begun visiting my dad in “rehab”, calling my husband by my cousin’s name—over, and over, and over again. We would correct her every time, but minor verbal blunders of her memory eventually shook down to pretty low-priority status while my dad was back in the hospital every few months for something. The kidney failure seemed to open the medical floodgates to infections, bed sores, pneumonia, etc.
Since science still doesn’t really know what dementia is, I can only say what dementia is like. It’s like my mother became a paper-mâchéd balloon—popped and slowly shriveling up on the inside. I know the color of the balloon, and just how full and vibrant it was. Those that meet her today know the white, crusty shell—all that’s remaining to the eyes and experience of everyone else. It’s like losing my mother long before she’ll pass away. It’s missing my mother even though she’s sitting right next to me. It’s wanting my mother to be there to comfort me about having to take care of my own mother as she forgets how to walk, to dress, to feed herself. It’s wanting to ask my mother what she would do if faced with a particular challenge having to do with my marriage or my children, knowing she won’t answer when I ask her things, ever again.
I remember her responding to my “I love you” several months into her suddenly very rapid decline, with her own very clear, “I love you”. It was a refreshing moment of lucidity, which would have, if taken out of context, seemed like nothing had ever changed. But I knew it was her voice as shouted from her own mental quicksand.
For decades, all of us were sure that my dad would beat my mother to the Great Finish Line. Now, it could easily be anyone’s game—both of them circling the drain at a pretty even pace. The second will likely follow the first into death, shortly after. I had my children at the very same time that my parents’ health started falling apart. I wish I could have foreseen the remarkable timing of them both being struck down by incurable illness at the very same time, especially considering that they “never want to be put in a nursing home!”, which, stated frequently in a half-joking manner when we were kids, would wreak enormous havoc on my brother’s and my ability to make the right choices for their care.
One of my biggest personal challenges will be overcoming the “wouldas” that will haunt me for the rest of my life. I "woulda" married better so I wasn’t chained to working full-time to support my children so I could have spent more time with my parents. I "woulda" had my children earlier so they could have gotten to know their beautiful inside-and-out grandparents who would have had such fun being grandparents. I "woulda" planted my roots closer than the 2 hours I drive each way to see them, so my brother wouldn’t have had to bear the bulk of caring for them at the expense of his own personal and professional life. My brother, in his late 30’s, has not married, he doesn’t have children and he quit his job a few years ago, largely (if not completely) to be more available to help care for our parents. I wonder whether he considers his own life to have been knocked off-course from what it should have been. I wonder whether he wishes that my life had been knocked more off-course than it was, once I went on to complete our plans of having a second child during one of my parents' brief medical plateaus.
Most days, I stumble around in a cloud of profound sadness about the impending loss of my parents. Having an elderly, sick parent is like standing by on the sidewalk while your parent is driving down the road, and having to stand idly by when you see a Mack truck heading straight into them; all of it, in slow-motion. You can't save and protect them like they saved and protected you on a daily basis through years of your own vulnerability.
I suspect I will view this time in my life as having to hop-scotch a sea of enormous, clumsy boulders of chaos and obligation, with the supreme, excruciatingly sweet and lovely elixir of being a new parent bubbling up out of the crevices of the day-to-day. Having parents teetering at the edge of their existence in this world at the very same time that I escorted my own two children into life has given me an odd, mesmerizingly brilliant sixth sense. It has been a wild ride to go from hearing the whisper of death while I sit in one hospital room to witnessing the urgent vitality of someone beginning their journey on the planet in another one. I feel torn between, a) wanting to be a beacon of responsible success so that the inadequacy I feel about being pulled in so many directions and doing a bad job at caring for, and being fully present for both generations will not have been in vain and, b) wanting to chuck the trappings of responsibility so I can better soak in the miracle and magic of life before it is over.
It is possible that I am some kind of living genetic time-bomb, a tragic Molotov Cocktail in human form that combines my dad’s spastic paraplegia and my mom’s dementia. For a while, my parents had been doing well together—essentially making one complete person, what with my dad having only lost his body and my mom having just lost her mind. I may lose everything at once. The way I feel right now, I almost look forward to the respite from the impossible, mad tugging that is the blessing of being in the middle of seemingly insurmountable family needs, together with attempting to build a secure future for my children. That being said—once the rest of my cards have been dealt, please just find a roof for my head, food for my stomach, a bed for rest; maybe some art supplies, coloring books and vodka. And please don't forget to visit.
Carisa Peterson is a published writer and produced playwright by night; she is a full-time mother and full-time worker bee by day. She is a lover of all things chartreuse and can be found doodling topiary trees in her spare time. Carisa is available for commercial copy and content writing. Please visit http://www.carisapeterson.com.