My Caregiver Journey
Let’s play a game. Hold one hand out in front of you and put a finger down if you have done or know any of the following:
Called an ambulance for your parent(s)
Managed the bills for your parent(s)
Scrubbed your parent’s excrement out of carpet and tile
Know your parent’s social security, cell, and medical record numbers
Seen your parent(s) naked over a dozen times
How we doin’? Are you signaling “Come here,” “Peace,” or, like me, “Black Pride, but oh-so-tired”?
I have done or needed everything on that list, and more, every year, for the last three years.
Take a breath, folks. I gotta get this out.
On May 5, 2021 I arrived at my childhood home to look in on Mom, who, for the previous month, had been exhibiting uncommon behavior. Her speech was slow and tired over the phone, and she spoke of not getting out of bed or eating much at all. I was empathetic, knowing she was still grieving my sister’s death in 2020—which she had to process alone, due to the pandemic lockdown—but when both her best friend and her tenant called me in New York to say she wasn’t looking or sounding well, I got my ass on a plane.
I found my mom on the floor of her bedroom, alive but certainly unwell, in a house so filthy one needed booties to walk around inside. She was lying on a pile of papers, clothes, and other materials, wide-eyed and dazed, wearing nothing more than an old, black, long-sleeved shirt, feverishly scratching at the large patches of psoriasis on her legs and body. She didn’t know how she got on the floor, nor for how long she’d been there. The house, always immaculate in its tidiness, was now cluttered with months of paperwork, Amazon-delivered items and their boxes, bottles and cans, uneaten DoorDash orders, trash, and feces strewn through and around every room. It was disgusting. When I saw my mom in that state I panicked and ran out of the house crying. The EMTs clocked her blood sugar at 716: a diabetic coma number. Had I not moved my previously-booked-for-Mother’s Day flight up two days I would have likely found my mom dead. The emergency room doctor told me she had a UTI, and a few days later, during an appointment with a geriatric memory specialist, Mom was diagnosed with Alzheimer’s dementia.
You just breathed and sighed, didn’t you? I know, it’s a lot. I feel your compassion. Sorrows, Sorrows, Prayers.
My mom needed help. I love New York dearly, and the 20 years I’d lived there as a resident were a dream, but my ties to NYC were growing thin. The pandemic took my job, and several of my close friends were leaving the city. I had no man, owned no property, wasn’t part of any social groups, and the only thing getting me through most days was Animal Crossing.
I had hopes for rebuilding once the world returned to normal, but when my mom was diagnosed all I could think about was the consumed-during-lockdown Netflix movie “I Care a Lot”: An elderly woman becomes a helpless ward of the state, victim to a money-hungry social worker and a rotten legal system. Hell neaux. It sucks that I only had a couple weeks to say goodbye to New York and all my friends, but I grabbed my cat, packed everything I owned in a U-Box to the left, and said “See ya later” to New York City to move back into my childhood bedroom and take care of my mom.
Little did he know...
This. Caregiver. Shit. Is. Crazy.
Now, look. I was under zero delusions this Assignment, as I call it, would be easy. There is nothing easy about going from 20 years living alone and taking care of yourself to, overnight, keeping your 76-year-old parent alive as well. When was the last time you tried telling an elderly Black woman what to do? Right...you don’t.
The experience of being a caregiver to someone with dementia is much like that of being a single parent. I consider myself the single father of an eight-year-old. My mom-child never knows what she wants for dinner; loves spending hours on end watching television in bed, which, unfortunately, she messes nightly; hates exercise; is indifferent to cleaning up after herself; and refuses to eat her beans or brussels sprouts, no matter how much I beg her, despite us, as a society, finally learning how to make them delicious. Frustrating and stressful is the day’s work of providing two-to-three square meals; doling out medications she doesn’t want to take at breakfast and dinner; doing the laundry (my god, the laundry); and cleaning the house, while also staying present at my day job and executing the long list of to-dos for managing mine and mom’s lives and my sister and dad’s estates in probate. My god.
There are good things, though. The smile with which my mom greets me each morning is, on most days, the shot of wheatgrass or ginger that gets me going. The peace of mind I have knowing she can spend her days comfortable and happy at home, opposed to alone and restricted in a facility, knows no bounds. She was raised within significantly traumatic circumstances, for which she never sought help outside of Jesus: her pain healed in the afterlife while wreaking havoc in this one. But she fought tooth and nail to give my sister and me advantages well beyond what was offered to or allowed for her. And so it is my pride and honor to give her what respite and comfort I can in this season of her life. Also, the often hard and cold superwoman of the 90’s is now a sweet old lady who always says “Please” and “Thank you” and trusts me to make sound decisions, even if it’s only because she can’t anymore. PLUS, running and redecorating this house brings me great joy. Like, I can feel my gay interior decorating genes activating. And people are not wrong when they say owning a home is like having a needy boyfriend: there’s always something to do/fix/clean/complete. Still, for example, our living room is actually being used by the family, and has a television, for the first time in 30 years!
We broke it in during this year’s SuperBowl. Mom and I can’t get enough. The number of true crime docs, Marvel movies, and reality shows I have gotten her to watch can only be attributed to the size of the television in the living room, and her not having the energy (or forgetting) to walk to her bedroom from the bathroom. Ain’t even been a year and this television has already paid for itself in spades!
This work has both Yin and Yang energy.
We are still in early stages. Mom’s dementia, at this point, displays itself mostly in her not knowing what day it is or not remembering what I told her 15/30 minutes ago what we’re having for dinner. She hasn’t started looping yet; though I feel somewhat prepared for that stage, having endured seemingly endless loops with my dad before he passed last year. I am grateful God made me, like my father, a patient man. I am going to need much patience in the years ahead.
For now, we’re okay. Mom is happy and wants for nothing, and I...am in therapy. I do need to find a support group, though. I’ve got supportive friends, but there’s stuff about this experience that only people who are in it will understand. It would be nice to find a community of people with whom I could commiserate, share best practices and resources, and find encouragement. I’ll add that to the list for 2024.
One day at a time.
