Sunshine On My Face, Shadows On My Back

Balance. It is an ultimate goal, but often it is impossible to execute consistently. A seesaw operated by you on one end, and an ever-morphing entity on the other. Throughout the pandemic there was a mega recalibration, but I’m confident true balance was never achieved.

Lately life has felt much more “normal” in the sense that Covid is no longer on the forefront of my every thought. It is still a very real factor, but I can feel, and see, a collective sigh in my community. Over 80% of adults here are vaccinated. Hope has come in the form of crisp mornings and yellow days.  People are paying homage to precious breath with giggles and reunions with loved ones, spilling out of their houses like clumsy, deliberate puppies eager to taste the world. It’s not lost on me how much death, pain, and sorrow it took to get here. But with respect to those we lost, life must be celebrated, albeit in accordance to the lessons we’ve learned along the way.

So it is another summer, another season to navigate. The transition from pandemic homebody to young adult re-entering the world gingerly hasn’t been wholly smooth. Unfortunately there’s no “How To” book on what to do after somehow surviving a year of caregiving during a pandemic and multiple wildfire evacuations. We’re not out of the woods yet. Are we ever?

When I look back the steps are a blur. I’m here. I made it. But how in the hell did I manage it? The same can be said for any other difficult situation. I don’t remember the specifics of all the labored tip-toeing I did to inch my way to today, but no matter how much I may have struggled or dragged my feet, I still moved forward along the path of unknown. And for those reading this, you did too.

Switching gears from our pandemic routine has been a struggle for both Mom and I, though I can readily admit it has been toughest on myself. Mom’s routine isn’t all that different. When she’s at home she does yoga, walks on the treadmill, works on her puzzle, snacks, watches football, and enjoys the backyard. On my full work days she is dropped off at Dad’s house. There she “swims” in his above ground pool, rides the stationary bike, watches television, and hangs out with the dogs in the backyard.  

To make up for lost income last year I have filled the capacity of my self-dedicated teaching hours. Being booked for several months in advance is a wonderful “problem” to have, but it is not without stress. Several hours a week is spent solely on scheduling, answering questions from parents, and acting as a swim instructor broker when I apologetically repeat that I am unable to take on more clients until the end of summer break. I text, email, instant message, and call swim clients seven days a week. Even on vacation in April I was compelled to respond to inquiries, at least to let them know I’d properly get back to them upon my return home, otherwise it felt unprofessional to leave them without any response at all for nearly two weeks.

Between teaching about forty-five swim lessons a week, attending graduation and birthday celebrations for close friends and family, completing multiple medical appointments for both Mom and myself, driving to and from places all day every day, trying to keep the house somewhat clean, and managing Mom’s mood and day-to-day schedule, I have gone full speed ahead into busy oblivion. No longer are hermits confined to the boundaries of high-tiered safety guidelines.

A few weeks back I hired a house cleaner for the first time ever. It was only for three hours, but it felt like an event. Honestly, I didn’t see a huge difference when I came home, but it was nice to know the bathrooms and kitchen had a decent cleansing with hands that were not my own.

One morning, a couple short weeks later, I slid out of bed and took a half dozen steps down the hall to Mom’s room. For better or worse, I’ve made it a habit to be Mom’s wake up service. She’s never sleeping by the time I enter her room, but she will lay awake in bed for hours every morning if I don’t prompt her to begin morning tasks of getting dressed, eating breakfast, etc.

As I approached her room and pushed the door open the smile I wore was quickly stricken by an unmistakable odor of shit.

“What the hell? Mom, did the dog poop in your room?”

Expectedly she retorted, “No. What are you talking about?” She couldn’t smell it thanks to Alzheimer’s.

I looked all over the room and in the bed to find the source of the foul smell. There was nothing to be found. The dog only ever has an accident in the house if we’ve left her inside too long. Her poop doesn’t typically smell that bad, but this was intense.

I flipped on the light in Mom’s bathroom and spotted a few small pieces of excrement on the counter, toilet top, and floor.

“Goddamn it Mom. You got poop all over the bathroom,” I blamed furiously.

I made my way a few feet down the hall to the other bathroom to grab some toilet paper and cleaning supplies. Flipping on the light illuminated the second crime scene. Bits of poop were smeared on the sink faucet handles, the soap dispenser, the countertop, and the floor.

“No. No. No. No. NOOOO. This cannot be happening. What the fuck. Really??!”

I deduced the obvious chain of events: The dog was stuck in Mom’s room all night and hadn’t been let out to relieve herself beforehand. (Mom had a tantrum the night before and hoards the dog in her room for moral support on such occasions). Since Mom lays in bed waiting for me to prompt her to start the day, she didn’t get up to let the dog out in the morning either. So, understandably, the dog shit on the carpet of her room. Mom found it and tried to clean it up herself. Usually it’s a quick, straight forward process of picking it up with some toilet paper, disposing of it in the toilet, and the cleaning the carpet. I’m always quick to volunteer to do it, for obvious reasons. Mom inadvertently made this situation exponentially worse by breaking the solid form into pieces, smearing it on multiple surfaces, and then, thinking she had taken care of the problem, climbed back into bed with the dog.

Shit was everywhere.

So to start off my very busy day I had to clean two bathrooms, the carpet, wash bedsheets, and have Mom take a shower. There are plenty of aspects of Alzheimer’s that I resent, but cleaning up poop and pee accidents that could have easily been avoided (or cleaned) under normal circumstances is high on my list.

I know at the core of her she is grateful for everything I do, but as this disease progresses I find that her gratitude is less and less apparent. In tandem with her deepening fall into this black hole, I disgustingly need more recognition for my efforts more than ever before. Of course I don’t, and will never, get it. I just can’t seem to stop this hunger to feel appreciated. It’s a selfish, desperate side of me that stems from the grief of watching Mom slowly die as I pile more and more responsibilities on my back. Sometimes, no, most of the time, I secretly just want to be the one taken care of. I want to be consoled and tucked into bed. I want to be her child, not her mother.

This is a corner of Alzheimer’s grief that I particularly struggle to process and let go of. Honestly, it probably won’t happen until my role as primary caregiver is over, but I’m trying.

I have always had an instinct to take care of others, but I do miss the particular love of someone filling that role so spectacularly for me. If I ever find a partner worth marrying, I know this will be an important factor to weigh. Professionally and personally my caregiver instinct will always be dominate, but there needs to be balance. I need someone who can tend to me the way I would to them. Someone who will commit to the other end of the seesaw and be equally willing to recalibrate both the gentle and broad teetering of change.

As I continue to acclimate to a post-lockdown world, I hope that Mom will keep hanging in there for at least awhile longer. 2022 may be quite different for us. My role as her guide from life to death will continue to change and I have big decisions to make. Another factor of balance to consider…when to make the shift from life in the trenches of Alzheimer’s to regaining my own life back. There’s much to consider, but of the many things I’ve learned since the start of the pandemic, as much as love can save us it can also drown us. At some point I’ll need to relinquish the closeness of this role and love her from a further vantage point, before we both drown. Until then we’ll keep doing our best to coexist as one.

2 thoughts on “Sunshine On My Face, Shadows On My Back

  1. Cecile Peters

    You are an amazing caregiver. It is hard to imagine for someone not in your situation how hard it is to keep all of the balls in the air without one dropping. Know that your friends admire and love you.


  2. Caroline

    By goodness, you are a gifted writer. And how you have captured the thoughts and sometimes shame of being a caregiver. Not quite living up to what is expected of yourself and yet showing more compassion at times than you thought humanly possible. Thank you for sharing the emotions that I myself are not brave enough to speak of. I wish you peace.


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