My mother's decline into dementia, in her own words
My mother, a famous animal trainer, wrote to capture her scientific observations. Then she began observing her own fragmenting mind.
When my mother speaks, she strings together words, pulling them in odd pairings from the curling fuzz in her brain. “Curling fuzz” is her phrase, words that capture what dementia feels like from the inside.
My mother, Karen Pryor, has always used language to capture life. Like a botanist sketching wild orchids rather than picking and pressing them, she observes animals and humans, then draws them with her words.
Look closely, she would say when taking me tide pooling on the beach in Hawaii, where she raised my brothers and me. “Do you see that gray rock?
Look closely. It’s actually a zebra blenny, she’d explain, a fish just pretending to be a rock to hide from anyone who might want to eat it.
“And there’s a hermit crab investigating that pretty, empty turban shell,” she said. “It must be growing too big for the snail shell it’s living in now and is thinking about making a move into a bigger, fancier house.”
A glimpse became a world, my mother’s words filling in the details. Observing led to writing. Writing simply caught what she thought was wonderful and kept it safe.
A natural-born scientist, my mother studied the intricacies and surprises of animals, plants, and people. Living in Connecticut as a child, she was one of those kids who found no better playground than the mucky, reedy edges of a pond, home to salamanders and dragonflies. She spied on deer in the woods and cheered for sparrows mobbing hawks above the fields where she lived. Even moldy bread was wondrous to her. Pocketing fresh slices from the kitchen, she waved them around in the air of the root cellar, the bathroom, the parlor, collecting random spores. Then, she’d put the bread on a shelf to admire the colors of the molds that would sprout from each slice. At college, she helped her dog whelp puppies in her dorm room and kept a tank of tropical fish in the living room of her sorority house.
To no one’s surprise, my mother became a naturalist who studied animal and human behavior and wrote book after book about what she saw, sharing her vivid world with readers. Her first, Nursing Your Baby — published after I was born — went on to sell more than 1 million copies across four editions. She wrote about breast-feeding both to help new mothers and to celebrate the beauty of the nursing couple, capturing maternal-infant behavior as only her language could.
His greed flatters, his bliss contagious, and his drunken satiety a comic compliment. The baby of four months stares and stares at his mother’s face as he nurses, looking into her eyes — loving her with all his soul. He smiles out of the corner of his mouth or puts a hand up to her lips to be kissed, showing her at every feeding how much he loves her.
– Karen Pryor’s “Nursing Your Baby,” 1st edition, 1963
As my brothers and I grew out of babyhood, our mother went back to observing animals in the wild, becoming a marine mammal scientist. In Lads Before the Wind, her book chronicling her years as a dolphin trainer at an oceanarium, she wrote about a dolphin who had been set free in the Pacific but decided to stick around, living in a nearby bay. As soon as he’d hear the gunning of a speedboat motor, the dolphin would come bounding through the waves toward it. She wrote about the experience in her book.
Sometimes he ran at the bow, sometimes he overtook us and ran ahead, but mostly he took up a position behind us in the boat’s curling wake, leaping with glorious grace from crest to crest. It was a heart-catching sight, this wild animal, accompanying us by choice with evident joy through the blue waves.
– Karen Pryor’s “Lads Before the Wind: Diary of a Dolphin Trainer,” 1975
Now 91, our mother is, as we say, “in dementia.” Like being the mother of a newborn or on a ship at sea, dementia is its own universe. To be in it is to be nowhere else.
As always, my mother is observing — only now, it’s the world of her own dementia.
Although known for her books and scientific papers, the bulk of her lifetime of writing has been in her journals — daily entries from the age of about 12 to 90. She’s kept every journal from every year, lugging boxes of her preferred black-and-white composition books through high school, college, marriage and children, divorce and remarriage and divorce again.
To Karen, even the increasing challenges of grocery shopping were yet another interesting phenomenon worth writing about.
I used a bottle of beef broth to make a truly delicious mushroom soup, but I couldn’t remember what happened to the bottle. And now in the aisles of the store I couldn’t find a bottle anywhere. Rats! So, I looked along the aisles more and more and suddenly I saw the title: Beef broth! NOT in bottles but in boxes! What a queer mental gap! The size of a box is about the height of a bottle and that just locked in my mind. To make that clear to me, I bought three boxes, different brands but all very proud of their beef broths.
– Karen Pryor’s journals, 2019
Her journals, filling 20 or more boxes now, document the daily life — an unusual life — of a 20th-century woman. They’re stored in my brother’s barn, awaiting something, I don’t know what. Perhaps in 200 years a PhD candidate in women’s studies or animal behavior will endure an aching back to read every one, researching her thesis.
But I don’t have to wait — my brother sends me a box of her journals from the last few years to parse through. Her dementia accelerated from a creep to a gallop so quickly, I was baffled. What happened? When did the confusion begin?
Luckily, scientist that she is, she’s left field notes, a complete day-by-day record of her increasingly perplexing days. She tracks her small but growing challenges, like trying to do her online banking.
I have a terrible tendency to lose information.
I have spent SO much time losing track of what I’m trying to follow.
I still have difficulties with moving bookkeeping around but oh well. Hell.
– Karen Pryor’s journals, 2019
In 2018, my husband and I downsized from a house in the suburbs to a city home in Charlestown. We moved my mother from her condo near our old house to an apartment near our new house in a community where she could walk to do her errands. While we agreed that she wouldn’t drive anymore, one day she did take her car out to do a nearby errand. Instead, she got lost in Somerville for seven hours before finally finding her way home to Charlestown.
Whew. Dumb me. I think I will not make that mistake again but I could be wrong. It’s hard work driving around this cow-path city.
– Karen Pryor’s journals, 2019
Being in dementia is hard work, too.
The end of driving didn’t keep my mother at home. Going out and about in the city was her joy, as friends took her to lunch or she caught an Uber to her ballroom dancing classes. Yet her outings were full of perplexities. Like Alice in Wonderland, my mother’s world was growing “curiouser and curiouser.”
Yesterday was a holiday with my friend Terry. We had a happy morning in her truck and at the Museum of Fine Art. I had no idea how to find the place but she had a talkative woman system in her truck that gave the direction.
– Karen Pryor’s journals, 2019
I’m struck by how cheerful she is about the increasing strangeness of her world, where a GPS has become a talkative woman and other oddities exist. She is bemused rather than alarmed, seeing only the positive. That makes perfect sense to me. My mother has always looked for moments of goodness — moments she captured and celebrated. That life-long habit helped shape her career, as well. Her insights as a dolphin trainer led to a widespread method of teaching new skills, called “clicker training,” that has changed the lives of dogs, horses, and their people.
Through clicker training, she taught tens of thousands of people that if you look for the good and reward it, good things are likely to happen again. It’s a simple but powerful shift away from the ingrained human habit of looking for the bad in order to punish it.
Gale’s friend . . . told me I had a huge and important background. I was famous. I forget her exact wording but I was quite excited to hear that. Nobody had ever told me anything about my work.
– Karen Pryor’s journals, 2020
After our mother stepped away from teaching and writing in her 80s, she took up ballroom dancing, and relished it as much as training dolphins and dogs. The dancing was complex to learn, terrific exercise, and a chance to dress up and feel pretty among friends — it was, doctors would say, a perfect package of dementia-mitigation activity. Then the pandemic struck. The dance studio closed. And her dementia galloped forward.
I went to the dance party at Arthur Murray. At 6:30 there was a one-hour lesson from a woman teaching us Argentine Tango. A long line of men and a long line of women. One older man took over my education and tried to teach me the Argentine variations which involved the woman going around the man in various pivoting steps. I never did catch on to it. I was glad when it was over.
– Karen Pryor’s journals, 2020
Journal by journal, our mother reaches for evanesced words, replacing those she’s lost with a fresh lexicon. She can’t find common phrases anymore, yet words have worn the deepest enduring grooves in her brain, so they keep coming.
Out of the mist, she begins to speak in poetry:
Wonderful foot makers. Her new dance shoes.
Arms covered with tapestry. Her hairdresser’s tattoo sleeves.
An up-bush. A tree.
Bright lighters. Roses cascading down a wall.
My brothers and I are charmed by her dementia poetry. We collect and share it like bits of sea glass.
We think of dementia as a descent into somewhere below, a dark and unknowable confusion. As I track my mother’s dementia, however, that metaphor feels inaccurate. She isn’t descending but distilling. As acquired interests and earned capabilities fade away, her lifelong quest to capture the good in the world with words remains. It’s the essence that was there in the beginning and now, it’s all that remains in the end.
A huge, black, billowing object in the sky.
– Karen Pryor describing a storm, 2022
In 2020, our mother lost the words “jigsaw puzzle” — a surprise because like everyone else, we were doing a lot of jigsaw puzzles that year. In her journal, she doesn’t fret over another lost term. Unlike the roads of Boston, a word problem is an easy fix for her. She simply renames the object, calling a puzzle “a splendid table forming show.” Not the usual words, but good words all the same.
A notebook and pen still sit on my mother’s bedside table in the memory care unit where she lives now. Visiting her, I pick it up to see her most recent entry, two whole pages of determined scribbling. She’s trying to catch what she sees before it falls through her failing synapses, like sea water slipping through fingers.
I had a tangle on a story. Lost now. Do something to who knows what? Nothing? I don’t know yet. Blocked. It’s a place to the bottom pole for the jungle. The jungle past. I will see in the jigsaw.
– Karen Pryor’s journals, 2022
Her mind is the puzzle now.
I share my mother’s love of jigsaw puzzles, the small thrill of seeing suddenly that a fragment of color and line are, in fact, the prow of a ship, and that spot at the edge of a plain gray-blue piece is God’s finger giving life to Adam.
Once, the 1,000-piece jigsaw puzzles she brought along on family beach vacations intimidated her grandchildren. Then, she would spend a few days completing a 500-piece puzzle, saving it for me to admire when I dropped by her apartment. Soon, 100-piece puzzles kept her busy all day. Then, with lots of help, she could manage a 34-piece puzzle. Or even, all on her own, a 10-piece puzzle. For now.
I’m working on understanding my mother’s thoughts in dementia. She helps me, as always, passing me a piece here, pointing to a piece there.
Looking up at the hummingbird feeder in the garden where we sit, waiting for a hummingbird to show up, she tells me, “I am belingered.”
Belingered? I repeat this lovely word she’s created. Does she mean believed? Beleaguered? Beloved?
Is she beleaguered by lingering? My brothers and I are certainly beleaguered by her lingering. Managing the life of someone who is gone but still here is beleaguering no matter how deeply you love them. We adopt the word as our own. Together, with our mother, we are all belingering. Yet, we are also savoring this moment in her still-extraordinary existence. Distilled but not diminished, our mother reveals the elixir that gave voice to her life all along.
Look closely, she said.
Notice what is wonderful, she meant, and honor it with words chosen well.
I do not mourn what my mother has lost but marvel at what remains. She no longer remembers that she wrote books, gave speeches, or traveled the world. She’s forgotten all but a very few of the many people from the landscape of her life. Everything that once defined her has vaporized — everything, except the poetry of her mind.
I dance but other people play with other toys.
I spilled myself into the Pacific Ocean.
The clouds are inventing themselves.
– Karen Pryor’s journals, 2023
“Invent” is a word that sticks with her. She looks at a photo of my eldest son, and her eyes prick with tears of love. She remembers him. “That one,” she says, “is loaded with invention.”
Now and then a moment comes of total clarity, the insight of a practiced observer.
My mother says, “I’m losing my brain quite fast. But I’ll probably be OK.”
This time, my eyes prick with tears. Me, too, Mama. I’m losing you quite fast. But I’ll probably be OK.
Gale Pryor is a writer in Charlestown. Send comments to email@example.com.