It’s 8:45 in the morning, early for me. But I need to wake up and check on things. I climb out of bed and walk down the hall. Her bedroom door is shut. Is she still asleep? Then I notice a light across the foyer, in the kitchen/family room. I go in there, wondering what I’ll find. My mother is lounging in the corner of the big L-shaped couch with yesterday’s newspaper on her lap. She’s absolutely still. At first I wonder if she’s asleep. Then she licks her lips, the way old, toothless ladies do. But she’s far from “frail, elderly” and still has all her teeth. She is staring out into space. Is she having a tiny seizure? What is going through her mind? Anything?
She is unaware of my presence, so I quietly retreat to her bedroom to seize the opportunity to change the bedsheets (long overdue) and go through her closet, hunting for her favorite pairs of slacks and the two flannel shirts that she repeatedly wears and never launders. Upon returning to the family room, I turn on the washing machine in the alcove. She startles. “Where did you come from?!!”
“The back bedroom,” I reply.
I live an hour away, so I’d spent the night. Normally my sister and I split the weekends when my dad is out of town, but I’m covering both days this week.
I ask her if she wants breakfast. “Oh yes. I haven’t yet.”
Then I sit back and observe to what extent she still has a grasp on her meticulous decades-long breakfast routine of ½ banana, a mixture of three kinds of cereal (carefully measured 1/3 cup of each), ½ cup of milk, small glass of orange juice, and coffee. My dad is away on an extended trip for the first time in 8 months, and I need to assess her current level of self-care. Do I need to ask Gini, her weekday caregiver, to arrive earlier to cover breakfast, in addition to lunch and a sizeable late afternoon snack?
My mother goes to the refrigerator and takes out a banana and a loaf of bread.
“What do you usually have for breakfast?” I ask, hoping to trigger a memory.
“This and this,” she says, holding up the fruit and removing a slice of bread from the bag.
She carries both over to the counter by the sink.
“What do you usually have with the banana?”
“This,” she says, holding up the bread.
“And what do you put the banana on?”
I’m fishing for “cereal” but instead I’m playing “Who’s on first.”
“Do you have anything else with the banana?” I ask, cutting it in two.
She walks over to the fridge and pulls out a quart of bright red strawberries, which no doubt had caught her eye. She’ll never turn down something sweet.
I offer to prepare them for her. I rinse off three berries and get out a bowl, wondering if that familiar vessel will spark a breakfast memory.
She gets a butter knife to slice the ½ banana and I hand her the bowl. While I cut a peach, I notice that she’s grabbed two more strawberries, cutting them up without washing. I’d forgotten to proactively squirrel them away and I wonder about my own dementia status. But then I reframe her action--that we’re so very fortunate she is still eager to be helpful.
Indeed, she still has her social graces. She still has a sense of humor. She still likes being outdoors. She still loves swimming. She still has the robustness of a woman ten years younger. She still enjoys reading, even if she can’t remember what happened two pages ago. All of her longstanding strengths still shine through, rendering her what is often referred to as “pleasantly demented.” And her living at home is easy for us, due to her cautious nature, which means she never wanders or tries to do anything beyond her ability.
Sometimes I can’t believe how lucky I am that I have a family who is willing to pay me to be her care coordinator and once-a-week caregiver. I essentially get paid to play Scrabble, swim, and go on nature walks. (Pinch me!) And I have the honor, the gift of being able to slow down with my mother and live in the moment of admiring a sunset, or watching a squirrel drink from a bucket, or playing catch in the backyard pool. As challenging and stressful as this job can be, there is a sense of tranquility to rest on.
I get out my granola while she looks for a utensil to eat her fruit. She goes over to her place at the breakfast bar and haltingly puts down the bowl. It’s such a pitiful breakfast. I cave in and go to the cereal shelf to get boxes of Cheerios, Raisin Bran, and Total, her longstanding trifecta. I put the boxes next to her bowl.
“Oh, there they are!”
But instead of putting the cereal into the bowl with the fruit, she gets up to fetch another bowl. She scans the open-shelved dish cupboard for a while, finally spying the faded blue melamine bowls on the top shelf, which she can barely reach, foregoing the regular cereal bowls on the lower shelf.
Just as she struggles with word finding, she struggles with object finding. I imagine her comparing each object she sees with the object she’s holding in her mind’s eye. But that internal image is elusive, fading in and out, until finally, her eyes focus on the desired object at the same nanosecond she’s dialed into recalling what’s in her mind’s eye. It can be agonizing to watch her take a minute or two to put her hands on something it used to take her two seconds to locate. But she doesn’t know the difference. Among the first abilities dementia took away was any awareness of her own cognitive decline. She still thinks she drives the car around town, though she hasn’t been behind the wheel in over three years. Last weekend at the grocery store, she asked me to take her to her car, so she could drive home.
As she regresses into helplessness and inexperience, her methods are reminiscent of early childhood
. Serving herself cereal means reaching into each box and grabbing a handful. She’s a tiny woman, so 3 handfuls make for a paltry sum.
First she helps herself to the Total cereal. Then she gets up, walks across the kitchen, and puts that box away on the cereal shelf. Next the Cheerios, and then she puts them away. Her actions are so inefficient-- similar to her picking up fallen leaves by hand, one at a time, whenever she’s outside. When her hand is stuffed full, she walks to the compost bin, and deposits her cache. She seems to find these simple, concrete tasks satisfying, perhaps because they are tactile and repetitive, with visible results.
Lastly, she picks up the box of Raisin Bran but puts it away without serving herself a handful. Repetitive pattern derailed somehow.
“How about some Raisin Bran? Those raisins would be good in there,” I say, pointing to her lackluster mix. “Oh,” she says, and retrieves the box. After depositing the final handful, she examines her bowl, shakes it, and goes to the fridge. The carton of milk is new, and she struggles to open it. Note to self… Gini and I should be proactive about that—yet another task for us to remember. Perhaps the extra effort will stave off our own cognitive decline. We can only hope.
She pours a scant amount of milk on the scant cereal. She eats it, slowly. Then she picks at her fruit. Full already? She has the appetite of a flea. Or perhaps she’s wondering why the fruit is alone? “I can dress that up with a little vanilla ice cream for you,” I offer. “Oh no,” she replies and then eats it up. I pour her some tea. Gini reports that my mother actually made coffee every morning last week, with mixed success, but today, not even an attempt is made. In fact, we’ve watched this skill wane over the past few months. But suddenly not knowing how to get her cereal together? This feels huge. I picture a raft of brain cells careening over a waterfall, plunging to their deaths, never to be replaced by new ones to pick up the slack.
Until recently, her brain cells have been going down a lazy river. Her “mild cognitive impairment” became noticeable 9 years ago, officially diagnosed a year later as “a probable precursor to dementia.” Since then, her decline has been practically imperceptible unless we compare successive summers; her care of the backyard swimming pool diminishes slightly each year. We took away the car keys three years ago. She stopped washing her hair or trimming her nails two years ago. But over the past few months, her decline has escalated—and it has become significantly disheartening as it’s now affecting more “activities of daily living,” such as being able to put together a bowl of cereal. Once an impeccable dresser, she now often wears the same outfit as yesterday. No more showering unless we suggest and assist. No clue about how to use the microwave oven. Unable to discern whether dishes in the dishwasher are dirty or clean, she puts them away dirty as often as not. Unable to find the words, she usually resorts to “thing” and “this” and “that.” Sometimes she thinks I’m her older sister.
Then last evening, standing in her kitchen after we’d returned from a short walk in her neighborhood, she says, “Huh. Everybody is gone, so I can’t stay here.”
I inquire, “Why can’t you stay here?”
“I need to get home!” she says. Her tone is sure and insistent.
The brain is a mystery. Dementia is a mystery. Life is a mystery.
Postscript: We now keep the cereal on a tray by the refrigerator, and so far this tactic has boosted breakfast cereal success. The microwave has been banished to the garage. And a couple weekends before my dad returned, the coffee maker had its last hurrah, with a translucent brown liquid dripping into the pot. My mother had put a tea bag into the basket and succeeded in making “drip tea.” I chuckled at the bumbling genius/ demented luck of it all. She was puzzled with the result but satisfied, and that’s what matters.