I’ve been covering the world of long-term care for almost 20 years now, focusing for more than half that time on direct care workers, so I’ve thought a lot about the many traits—including competence, compassion, reliability, attentiveness and patience—that make good direct care workers so good at their work. But not until my own mom became a “total care” nursing home resident did I learn to appreciate what I now think is the most important trait of all.
A massive stroke at the end of 2012 left Mom with severe expressive aphasia. She can usually understand what is said to her and knows what she wants to say in response, but she can rarely get out the words she needs to make herself understood. She’s come a long way, after months of speech therapy, but for every time she can say the right word or short phrase there are many more when she can only get out a string of unconnected words.
Watching people react to Mom has taught me a lot about how our words define us. Her aphasia makes it hard to know what she can understand or what she is thinking, especially since the stroke also affected her in other ways: She is far more passive than she was before, relying on other people to initiate activities and to manage her affairs, and she sometimes gets confused about things as basic as which utensil to use with her food. It’s clear to anyone who pays attention that she understands almost everything that’s said to or around her, but even my sisters and I, who know her best, have different takes on how much she comprehends. Some people who have known her for years could not figure out what to make of her when she stopped speaking coherently. A few talked down to her, as if she lost her intelligence along with her words. Others directed all their talk to me when I was with her, talking as if she weren’t in the room or asking me if she knew who they were or could understand them, even as she welcomed them with a bright smile or made appropriate noises in response to what they are saying.
But as Mom’s visits from those friends and neighbors trailed off, she made connections with a raft of new caregivers. When we checked into the nursing home on December 24, the aptly named Michele Noel was our Christmas gift. Mom was still totally mute then, sleeping most of the time and pretty out of it even when she was awake, but Michele, a CNA, connected with her right away. During those disorienting first few weeks, Michele took time to visit whenever she was on duty, even when she wasn’t assigned to Mom’s wing.
Mom clearly liked Michele’s hand and foot massages and encouraging words, and I appreciated the things she brought us from the activities room to engage Mom’s interest and help her regain some of her words. But what really made Mom light up was the way Michele “got” her, picking up on the kind of person she is by looking into her eyes, paying attention to her manner, and asking me a few smart questions about what she liked to do before her stroke. Michele joked with Mom, shared stories about her life, and talked about everyday things, like knitting and reading, that they both enjoyed. The connection they forged was a lifeline to the outside world, making Mom’s room feel warmer and brighter every time Michele dropped by.
Many other people, from speech and physical therapists to charge nurses to members of the dining staff to CNAs like Michele, have formed warm, sometimes powerful relationships with Mom since her stroke. Amy, one of the home care workers we hired for a few hours a week to do things the nursing home aides were too busy to do, told me that Mom had helped her a lot. “A lot of days there was something going on in my life when I got here that had me feeling sorry for myself,” Amy said. “Then I’d get to your Mom’s room and see how much more she had to deal with than I did, and how she never complained or felt sorry for herself and was always working so hard to get better. That made me think, ‘If she could do it, I can too!’ She encourages me, too. I told her I wanted to go to nursing school but I wasn’t sure if I could do that full-time and work full-time too. She put her hand on my hand and told me I could do it. That meant a whole lot to me.”
The woman Amy described—allergic to self-pity, hard-working, and quietly helpful to people in need—is the mother I know. I was deeply moved that Amy could see through Mom’s stroke-related disabilities to those essential truths. I was also impressed that she recognized Mom not just as someone in need of assistance but as a person with something to offer.
And that, I think, is what all good caregivers have in common. They look at a person, regardless of his or her physical and mental capacities, and see that person whole. They see what is there, not just what is missing.
Good caregivers do a lot to improve the lives of the people they assist. But seeing their clients for who they are and letting them know they are seen may be the most important thing of all.