One of the questions Lisa and I were asked most frequently by people who knew her mom had Alzheimer’s, but hadn’t visited, was “Does she still recognize you?” It sounds like a straightforward question, and in some sense, maybe it is. But it’s also been confounding to us, even exasperating or maddening. Not because it’s too personal or open-ended–or because it puts us on the spot to talk about things that we don’t want to talk about–but because it’s not personal or open-ended enough.
Consider some other questions that might be easier, more comfortable or more rewarding to answer about a friend of family member who’s living with Alzheimer’s. “What’s her life like these days?” “What do you do when you visit her?” “What are the ups and downs for her where she’s now living?”
Those are questions we ask about people we’re interested in. They express care and interest in how someone’s life is unfolding, and they include the person we’re asking about among the living. “Does she recognize you?” doesn’t quite do that. It focuses on a single point, beyond which a person with Alzheimer’s can’t do something. In this case, that something is to recognize us, but what does that mean? And what does “still” mean?
Family members and care-givers may identify “turning points” for someone with Alzheimer’s or dementia that follow from the disease itself–like losing the ability to stand or speak–but transitions are rarely either sudden or complete. And other changes follow less from the course of the disease than from treatment and care decisions made primarily by family members and care givers. Beyond their disease and care arrangements, the fabric, rhythm and quality of everyday life for people with Alzheimer’s is shaped by choices they make for themselves: to approach or avoid someone; to do something or nothing with their hands; to open or close their eyes; to listen intently, casually, or not at all; and so on.
The behaviors that people look to as evidence of recognition cut across these different sources of change and variation. As a yes or no question, “Does she still recognize you?” neglects those differences and the contexts and circumstances in which changes may or may not be visible. That’s unfortunate and potentially exasperating, because it’s within those contexts and circumstances–while wrestling with constraints, opportunities and choices of various sorts, moment by moment and day by day–that life can become meaningful for persons with Alzheimer’s or, for that matter, for anyone else.
Specific paths through those contexts and circumstances will vary from one person with Alzheimer’s to another and from one moment to the next–as they do for the rest of us. A favored seat in the dining room may be more important than what’s served for dinner tonight, but not tomorrow night. The darkest despair for one person might come suddenly by learning that a frequent visitor can no longer come; for another it may emerge slowly as a reading becomes more and more difficult, and eventualy impossible. But these differences reflect complexity, not chaos. If we look closely enough at the details of their lives, we’ll see individuals with Alzheimer’s struggling to make the best of what they have, regardless of how little, in our eyes, that seems to be. And some of them will be doing a very good job of that indeed.
It’s difficult to absorb the details and complexity of other people’s lives, but it’s the only way we can fully appreciate their humanity. That’s true whether or not people are living with Alzheimer’s, but those who have the disease deserve that appreciation as much or more than the rest of us. The more important question is not whether they can recognize us the way they used to, but whether we can recognize them they way they are now.
Some additional thoughts about the “Does she still recognize you?” question came to mind when Lisa and I talked through the different kinds of recognition we’ve experienced with Leslie and other residents in her memory care homes. Over time, we pulled these together into the script below. It may be a little challenging to read, but some simple questions deserve a complicating response, and we think that’s true for this one!
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“Does She Still Recognize You?”
By ‘recognize’ do you mean like to know my name when she hears it and actually say it when we greet each other? Or know I’m the same person each time I see her, from one time to the next? Or know I’m the same as I was 10 or 20 years ago, when I wasn’t very much like I am now, but still had my name? Or do you mean like knowing that I’m the person who has the life I now have, and knowing enough about that so that she can put my life now together with what I was before, like we’d have to do if we hadn’t seen each other for a while? Or are you asking if when we’re holding hands she knows her hand is in mine and mine is in hers, or maybe just knowing it’s the two of us holding hands and not her and someone else?
Or is your question about whether she notices what I’m feeling, or senses that I know what she’s feeling, when we’re together? If so, is that kind of recognition more or less significant than matching names with faces, or matching who I used to be with who I am now? Or are you asking about how confident she is in recognizing me or that I recognize her? Does she confuse me with other people or think I’m confusing her with someone else, is that it? Or maybe it’s do we recognize ourselves with enough confidence to trust each other, or be honest when we’re together? If so, with what margin of error? Do we get a pass sometimes, the way people do when they refer to a brother as an uncle, or a mother as a daughter, and so on, like in Freudian slips? Or when they’re drunk or exhausted? How about when we see someone after they’ve been in the hospital or gone through something physically or emotionally traumatic and we say, they’re “not the person I knew,” even though we call them by the same name?
Do you mean recognize in that way? Or are you thinking that even though my world and her world have been dramatically transformed over the past six or seven years we might be able to appreciate the changes each other has gone through—even if other people can’t? Is any of this what you mean, or are you asking only about the externals, like seeing people and properly identifying them by accurately matching two kinds of information, like two factor authorization on the Internet? If so. what matches would convince you she recognizes me? My face and name would work for that, right? But what about my face and how it feels to hold my hand? Or the sound of my voice and the regular time I visit? Is any of this what you’re trying to get at?
Or do you mean recognize more deeply, like when we sometimes hold each other’s gaze, and it feels like we’re seeing each other without much if any artifice, seeing soul to soul and sharing a kind of recognition and intimacy that doesn’t happen often in normal social life, and is pretty disconcerting or even alarming when it does—as it would be if you and I were looking at each other in that completely direct way while I asked you these questions?