When Parkinson’s disease becomes Parkinson’s dementia, dive into the wave—and meet the pain as it rises.
A caregiver’s story by Anna Trayne.
I’m trying to get her to look directly at me, but she’s staring at the desk, at the calendar with its tangle of scrawls in different colors, words scratched out, times indistinct. From a distance, it’s a modernist sketch, gallery-worthy if you didn’t know it was an 80-year-old woman’s frustrated attempt to make sense of her days.
“I know I’m supposed to do… something,” my mother says, biting her finger. “I messed up. I messed up.”
I feel terrible for her. She’s afraid she’s upset someone: the guy at the bookstore, her physical therapist, a friend she’d invited over for tea and then forgotten about.
“My friend Sandra had to sit at the front door for hours waiting for me,” she said, close to tears. “I really messed up.”
My mother Florence—Flo to her friends—was diagnosed with Parkinson’s several years ago, a great blow for someone who was not planning to slow down at all in her 70s—or even age. So she really went for it. She lifted weights, did yoga, drank water, ate greens, and signed up for movement classes with other “PD” folk in our East Bay community. She was more active than I have ever been, and probably more positive. When I joined her and my stepdad at a benefit for Parkinson’s dance, I was the wallflower, leaning back in a folding chair eating gluten-free Oreos while this supposedly movement-challenged group whirled around the room with real and determined grace.
But Mom wasn’t ready to lose her memory.
At first it all seemed hilarious—which proves, if nothing else, that humor is a great defense. My brother and sister and I cackled on the phone about the silly things our poor mom had said, just as we had for years. We suspected something might be wrong, but at the same time her cheerful overconfidence, the social gaffes, even the forgetfulness—it really wasn’t out of character for our mother. That’s what we told ourselves anyway. Flo had always been creative, the kind of mom who sent us to school with oat bran muffins on cupcake day. So now when she set the microwave to 200 minutes for some frozen pizza it seemed like just another mom story.
But other things were changing too. She was distracted and more inward, and also weirdly mellow. A lot of the many difficulties I’d had with her, well, they seemed to be less tough to deal with. I was enjoying the time we spent together now that she didn’t seem interested in probing my failures or appropriating my successes.
I kept saying to friends that it’s like she’d lost just enough of her psychic power to be (almost) relaxing to be around.
If this keeps up, I thought, I’ll never need to spend another dime on therapy.
But somewhere in there I knew that the memory lapses were serious, a likely harbinger of other non-motor PD symptoms ahead. She went from an official assessment of “mild cognitive impairment” to something worse. She still won’t use “the D word,” as she calls it, but that’s what it is.
For Mom, it shows up as confusion, especially first thing in the morning, and trouble perceiving time and dates, distinguishing between the past and the future. She struggles with her calendar, trying to figure out what she’s supposed to do and where she has to be, growing more and more distressed. Some part of me wants to look away. It’s too raw. But I suck it up and dive into the wave, meet the pain as it rises. And I’m there with her, for her. I hold her hand, tell her again that it’s alright, it’s alright. Don’t worry.
“Your friends know you’re having trouble with dates and times, Mom. They’ll be glad to see you whenever they can. It’s OK. It’s all OK.”
She’s soothed for a bit. “Are you sure?” she asks. “Are you sure, I…” And then she trails off. I don’t know where she’s going. She pulls her hand from mine and turns back to the calendar, her brow furrowed, an anguished expression as she tries to make sense of her week.
“This happens every morning,” my stepdad tells me. “She’s very anxious.”
He’s a vigorous guy, still walking miles in the Oakland hills every day. Years of running a business have left him confident in the efficacy of meetings and memos. “No worries, though. I type out these lists for her and it helps her stay on track,” he says, brandishing a scrap of paper.
I marvel at his unflagging confidence to manage the situation—or is it denial?
Photo by Dan Kamminga, courtesy of Creative Commons via Flickr
What if there’s more than one track now and her mind is lurching from one to the next? I can almost feel it as it happens. Or maybe there’s no track to follow—she’s out there in the desert of her mind, sand covering her footprints as she walks—so she’ll never be able to find her way back. And the way forward is treacherous, a blinding sandstorm ahead.
And more disappointed friends, missed appointments, whole weeks obliterated.
For months, my siblings and I have been alternating between fits of practical strategizing—how to make sure she’s safe in her home, especially when she’s alone—and a more existential sense of loss. Our mother is not dead, or even dying. But she’s leaving us, with every step she takes into that dusty new world of hers. Being with her now is to cherish and to grieve at the same time, to be together and apart—and to stay with her, guiding her as best I can, as the days blur and the path grows harder and harder to follow, for all of us.