Whiplash

It’s not unusual for eldercare to become the moment when one’s adult life jumps the guardrails. And when it comes, it comes quickly.

— Ellisa Altman, Poor Man’s Feast

Altman is talking about caring for her aging mother. I’m talking about my partner of only five years. We’re not married.

Three years ago, he was diagnosed with Lewy Body Dementia, a ravaging and cruel form of what is euphemistically called “mild cognitive impairment.” There’s nothing mild about it. It’s often misdiagnosed, mistaken for its close cousins, Parkinson’s and Alzheimer’s.

But Lewy Body is the trifecta of dementias, characterized by a steadily worsening maelstrom of movement, cognition, behavior, sleep, and autonomic function. (I looked that last one up. Basically, it means the total loss of control.)

I am his caregiver. Full stop.

He went from loving partner to faltering patient seemingly overnight.

What if we’d been married for decades? Raised kids together? Doted on grandchildren as we frolicked together through our golden years in a Winnebago? I’m pulling the Winnebago thing out of thin air, but you get the idea. Would this have made the fact that I willingly threw my own life overboard to take care of a man I loved more plausible?

When the reality of Lewy Body began to dawn on us, I promised I would never leave him. I haven’t, and I won’t.

As the grip of his disease turns slowly into a stranglehold, I ask myself why.

Is it because his family calls me “heroic”? Because they applaud my fortitude, my resilience, and my selflessness? Is it because it makes me feel noble, capable, and needed? We all want to feel needed. We all want to be on a pedestal.

I scarfed down every accolade that came my way. And then some.

Just before we moved in together, just before Covid shut the world down, I lost my job. I was rudderless, without the armor of a prestigious career. Gone was the professional persona I’d honed over twenty years. Poof. In an instant.

For the first couple of years after his diagnosis, we managed, able to hold the fear and loathing of this dreaded disease at arm’s length. It wasn’t really so bad, was it, we said to each other. We can get through this. We’ll outrun the five-year prognosis.

But Lewy Body is quicksand. You step into that ground-sucking hole, and there’s no way out. No doctor can chart the course, the ups and steep downs. They still don’t know much about it, unlike Parkinson’s and Alzheimer’s. Until recently, it was only a presumptive diagnosis. Now, with skin biopsies looking for the Lewy Body proteins that attach themselves to brain cells, it’s officially clinical.

They can’t tell you when things will get really bad. All they can do, outside of prescribing a complex cocktail of neuro and psych drugs, is to exercise, eat well, and do things like crossword puzzles that might, but only might, stave off the ravages of this horrific disease. So, he rides the Peloton bike almost every day, I cook with a lot of turmeric, and he takes stabs at organizing the work of his fifty-year writing career before it’s too late.

Check, check, and check.

But he can’t really read anymore. Email, his lifeline, gone. He can’t type. He thinks the remote is his iPhone. He puts ice cream away in the dishwasher. He used to take the garbage out until one day I found him sorting through apple cores, crusted yogurt cups, and chicken bones, having spread that week’s trash out on our front lawn.

Don’t get me wrong. There are stretches of three to four "good days.” That’s the heart-wrenching piece of this. He’ll wake up one morning, get himself dressed, make a couple of phone calls, and pour cereal into a bowl instead of on the floor. I’ll think, Hey—there you are! Welcome back! Until he’s not. The doctors say this is what makes Lewy Body such a cruel disease. It fluctuates, fools you, tricks you into thinking this is all a bad dream. It’s like an exorcism gone wrong, with my head spinning in perpetual whiplash.

But are you taking care of yourself? well-meaning friends and family ask me when they don’t know what else to say. I don’t know what that means anymore.

My partner’s 85-year-old stepmother called me the other day. “How are you doing?” she asked. It was the first time anyone had asked me this and actually wanted a truthful answer.

I burst into tears.