I was cleaning excrement from my dad’s carpet, and crying, when it hit me.
No one cares.
The weight of that realization was crushing.
Being alone in your hardship is almost worse than your hardship.
And that’s why it’s important to know that even when it seems you are up against the whole world, you really aren’t.
Of course, people cared about my father.
But once he went into “assisted” living, all real attention to improving his condition seemed to fade. And when the gunk hit the floor, people seemed to scatter.
At first, I was hopeful my dad’s transition to what seemed like a nice, decent facility would work.
The staff seemed nice. Their promises even nicer. They’d control his meds and supply regular meals. There was a cleaning service and help with laundry and lots of activities, including football game parties.
Mostly, there was a super friendly guy on staff named Willy, with whom my dad immediately bonded.
It seemed safe. It seemed plausible. It seemed good.
What it didn’t seem was temporary. Within months, much of the staff would change, Willy and many of the longtimers would be gone, leaving gaping holes in the service.
There were days my dad’s meds didn’t arrive. There were arguments about getting him back and forth to the dining room, a considerable distance for a man unable to walk more than a few yards.
Most days, he never left his apartment. He was rarely showered. And “no” became his default for every question.
Often when I arrived, the place reeked. He’d had accidents and no one had cleaned them up. For someone who’d always been a neat freak, his inability to keep the place tidy only added to his rage, which often met me at the door
His dementia made him prone to episodes of incorrigible behavior that were completely out of character. I understood the staff’s apprehension to argue with him, and I gave them permission to say, “Your daughter says you have to (eat, shower, get dressed, whatever).”
That worked every now and then. I took his subsequent verbal abuse because I thought regular meals for him were more important than my feelings.
But it hurt. And that hurt continues to this day, even though I know it was the dementia raging and even though he’s been gone for more than a year.
I am haunted by his cruelty, by their ambivalence and mostly by the fact that I failed to help him assimilate.
I had pictured a team effort, with the facility’s staff and other family members pitching in, a united front. What I got, too often, was crickets.
I persevered as best I could, but I won’t lie and tell you I didn’t think about quitting. I did think about it, but that only added to my self-disappointment.
Instead, I went there as often as I could, bringing sandwiches and chips and cases of Diet Coke, all of which he demanded. I began every visit with a thorough cleaning of his place. I changed the sheets, did his laundry, cleared out the fridge and, yes, scrubbed the poop from his carpet.
Then I went home and paid his bills, bought his supplies and handled his paperwork.
A year or so later, I was exhausted but deep into this routine.
And then he started wandering. At least three times, someone found him, shoeless and shirtless, outside in the dark, often in the cold. Staff never told me about these “incidents.” He did. But they were always confirmed.
How a man with mobility issues could get outside on his own confounded me. But who wants to rattle cages and potentially make things worse?
Finally, we moved him into memory care. The bump in rent was considerable but less than half of a nursing home’s monthly fees.
He was not happy about the change. And, within months, he declined rapidly, to the point that he was essentially deemed to be too much — I believe the official term is “two-person assist.” He was sent to the hospital and not allowed back.
The experience at the subsequent nursing home was just as bad, if not worse. He contracted COVID twice, was moved to different rooms weekly. His rage intensified as his will to live dissipated.
Throughout his nearly two-month ordeal there, I can’t recall a single day when he seemed his usual generous, jokester self.
He wasn’t always a curmudgeon. In his early days he was witty and kind and helpful. And he was so well-liked.
He grew up poor, married too young and was years into fatherhood by the time he turned 21. He didn’t have the retrospect of a misspent youth. Nor did he have the benefit of role model parents or a higher education to guide his decisions. Sometimes he said the wrong things or acted in haste. But he was thoughtful and apologetic, and he seemed to help anyone who needed it.
I believe he wanted to make the world a better place; he just didn’t know how.
Much of his decline was due to his condition, but I know unhappiness takes a toll.
I never once felt like I had a handle on his aging issues. I was perpetually scared and stressed and overwhelmed with the feeling that all of this was failing.
I initially kept the struggle to myself, reaching out only in moments of despair.
It’s amazing how many people “can’t deal” with the sick or the elderly and so they avoid them.
I think it was logic more than emotion that pushed me to open up to my friends and my cousins, candidly sharing what I thought were the “secret” horrors of eldercare.
And guess what? Some of them had been down this very road too. And, before long, more of them would find themselves traveling this path. We immediately bonded over the struggle, sharing stories and tips and, most important, comfort.
And that’s when I realized: We are never alone in our hardship. We just need to find our circle of care.
There will always be one. Reach out, connect, be honest and give as much comfort as you take.
Life throws us difficult, seemingly impossible challenges, but it also provides others who are ready to help us get through it.
And once you do, you will carry in your heart for the rest of your life the knowledge that you can do hard things.
And on future days when everything goes to crap, when there’s nothing but poop and you’re the only one there to scrub it off the carpet, you will know you can do it.
Donna Vickroy is an award-winning reporter, editor and columnist who worked for the Daily Southtown for 38 years. She can be reached at [email protected].
