On Purpose

The big thing that gets lost when the caregiver needs care

As Nina’s Alzheimer’s progressed, I built a theoretical list in my mind: The List of F*-ups and Do-overs. It was theoretical because in real life you don’t get do-overs. Still, it helped me keep an open mind to changing our approach as her condition worsened. Perhaps, in the back of my mind I hoped the list could someday help others. In the moment, however, it was just a growing list of unfortunate mistakes.

At the top of this list was stealing Mom’s sense of purpose. We did this steadily over time, and entirely out of love and the best intentions. As she lost the ability to do the things that had once been on remote control, we pared away her responsibilities without replacing them with anything else. We thought we were telling her, “We’ll do the cooking, the cleaning up, the shoveling, the laundry, the shopping, the deciding of everything, so you can focus on taking care of yourself.” Instead, the message she heard was, “You’re not needed.”

LEARNED HELPLESSNESS

We failed to comprehend the giant void we’d created. By taking away these “burdens” we’d also taken away her sense of purpose. It contributed to her feeling that she was living a “charade,” as she’d expressed it on that January day, when she’d sat on the edge of her bed, asking to die.

Much later I discovered the concept of “learned helplessness,” and the associated research that shows how people will naturally give up when they lose a sense of control over their environment. With no sense of agency, animals and people alike will see no point in trying, cease to strive, then fall into a self-perpetuating downward spiral of their spirit and health. Nina’s spirit had kept her out of the spiral, but only to maintain a different charade, one that spared us from what she was really feeling inside.

CARE IN THE KITCHEN

Had we understood the disease better, or even human nature, perhaps we could have understood how desperately Nina wanted to be a contributing member of the household ship she had so ably commanded all those years. By the time we actively looked for ways to re-enlist her, it was hard to find appropriate tasks that were safe, uncomplicated and in some way satisfying.

Taking care of people, and especially Buck, was a sizeable chunk of Nina’s identity. She was the attentive June Cleaver to Buck’s hard-working, domestic-skills-averse Ward. Buck made no claim on her kitchen. In fact, his lack of kitchen skills were legendary. He was deep into his sixties when he asked Nina where she kept the milk. Not surprisingly, kitchen fluency was at the core of her care-taking mojo, and it was a huge win when we found something that allowed her to contribute in that arena.

Chopping vegetables with sharp knives was out of the question, but peeling them was right up her alley. Whenever we could plunk her at the kitchen island with a bag of carrots and a peeler, right in the bustle of meal prep, that was perfection. She peeled, sometimes earnestly, and smiled, but mostly smiled. I wonder now why we didn’t simply keep an endless stock of carrots in the fridge, just to keep that smile.

Every solution, however, was short-lived as her capabilities steadily diminished. Eventually she lost the dexterity to handle a peeler, or would have the bowl and the carrot and the peeler in front of her but not know what to do with any of them. Her expression said what she could not verbalize—the disconnect was confusing, upsetting, scary.

Similarly, where she once could busy herself by setting the table, she soon lost the ability to know how many places to set, and then what constituted a place setting. Much later, again too late for us, friends shared ideas they had used for “work”—things like folding napkins or sorting silverware or tying and untying things—to create some achievable purpose. As long as she felt like she had some role, it would have been enough.

There were also some things we did right. We knew that it was important to maintain her role in the landscape of our living room, the hub for everyone not in the kitchen; we encouraged her to sit on the fringe of the action—not in the center of the fray where she’d feel pressure to participate, but close enough to hear and react to the conversations around her. One of Nina’s greatest gifts had been her way of listening to others, and making them feel heard. She had lost her ability to communicate verbally, but not her ability to be present.

            We also didn’t interfere with her daily trips to the post office on foot, a one mile round trip. It probably wasn’t the safest routine, but ever since she’d officially lost her ability to drive on D Day, it was her only independent access to the outside world. She didn’t go for the junk mail, or to send the once copious amounts of Thank You notes she could no longer write. She made the trip to take in all the people, pets, scenery and wildlife she might see along the way. No matter how far her memory and basic skills slipped, she never once got hurt or lost or confused going to and from the post office.

A PICTURE OF PURPOSE

I’d sent Nina a little stuffed bunny for Easter the spring after Dad died, when she was still living with Beatie and John, and before she moved into her first “home.” I knew that on this of all days she’d be missing the happy, messy, lawless, chocolate-fueled gatherings she had hosted in her home. If one day could affirm Nina’s role and capture her values, Easter checked all the boxes.

There’s an old snapshot from an Easter Egg hunt on Easter Sunday that grabs me hard every time I see it. Nina is facing the camera straight on, her hair held back with a length of braided pink yarn, smiling, fully alive, relevant, needed. You can tell she’s needed because of me at the bottom of the picture—a little, barely three-year-old nugget with mussed up hair dressed in the same faded yellow ski coat as hers, my back to the camera. My head is tilted up, looking up at Mom, needing something, knowing she would satisfy that need in an instant. She is radiant, loving everything—her role, the setting, the company, the chaos. Long before people talked about being entirely “in the moment,” that’s exactly where she was. Whenever I see that picture, I lose myself in all that the image says.

Nina, caught in a moment between meeting everyone else’s needs

TOO MUCH ASSISTED, TOO LITTLE LIVING

 “I feel useless.” Nina said it to her cousin, Tina, on one of her visits. She would never admit that to her own kids, but Tina was her peer, and also her safe space. She was one of the relatives who now lived much closer to Nina since her move to assisted living, and was able to see her more often. Those visits were a major bonus of the difficult move, but it broke Tina’s heart to hear Nina say she, the caretaker-in-chief for so many years, felt useless. She wanted to help change that. There were unexpected bonuses that came with her new living situation; but her sense of purpose, which had already slipped so far, fell off a cliff. We knew it was a void that needed to be filled, but none of us knew how.

Up Next: The Power of Play. It gets its own sandbox next week because play is important at every age. It’s science, man.