Janelle Taylor
Appearances
This American Life
823: The Question Trap
My mother is living with progressive dementia. Because I'm reading these words on the radio, I can't hear your response. But I'm listening for the question that, as I've learned, always comes. Everyone, almost without exception, responds with some version of the same question. Does she recognize you? There are variants, of course. Does she still know who you are? But does she still know your name?
This American Life
823: The Question Trap
However it may be phrased, the question is always whether my mother recognizes me, meaning can she recite the facts of who I am, what my name is, and how I'm related to her. When everyone keeps asking me, does she recognize you? I find myself thinking that is the wrong question. I believe the question really is, or should be, do you, do we, recognize her as a person who's still here?
This American Life
823: The Question Trap
Does she recognize you? The weirdness of the question becomes more obvious if you think about what would be required to answer it. Let's say I ask my mother, what's my name? Who am I? How old am I? How do we know each other? testing her that way. What does it prove? What does it actually accomplish? I read a book by a journalist named Lauren Kessler.
This American Life
823: The Question Trap
She wrote about how she would correct her own mother when her mother called her by the wrong name. Every time she would visit her mother, she'd take framed photos from the dresser and point to them and quiz her mother. You know who this is, don't you, Mom? Of course she didn't. Kessler writes, So I told her again and again, each visit, who was who, and then quizzed again.
This American Life
823: The Question Trap
Thinking back on this now, I am appalled at my insensitivity. What did I think I was doing? I managed to accomplish only two things. I made myself miserable and I made my mother irritable. I don't need my mother to tell me my name or how I'm related to her. I already know these things, and I know that she has dementia.
This American Life
823: The Question Trap
So why then would I make a point of asking her these questions that I know she can't possibly answer? It seems rude or just mean. I can't bring myself to do it. I guess you could say that my mother raised me better than that. Does she recognize you? I'm not so convinced that the inability to remember names necessarily means that a person with dementia can't recognize or care about other people.
This American Life
823: The Question Trap
But very often, it does mean that other people stop recognizing and caring about them. My mother was close to lots of people, but only one friend remains present in her life. Every month or two, Eli Davis drives an hour and a half from her home to Seattle to visit mom, bringing treats and hugs and her always cheerful self. I love her dearly for it. And I wonder, where are the others?
This American Life
823: The Question Trap
Where are the couples with whom my parents socialized? The women with whom mom spent hours and hours on the phone all through my childhood? This shouldn't surprise me as much as it has. Maybe it's not fair to expect friends to step up, even close family drop off. Friendships in America are not usually expected to survive dementia.
This American Life
823: The Question Trap
Friendships are often more like pleasure crafts than life rafts, not built to brave the really rough waters. Does she recognize you? When people ask me whether my mother still recognizes me, they're often expressing concern for me, asking me how I'm bearing up under the burden of suffering that her dementia must place on me. And they're quite ready to hear about my burdens and my suffering.
This American Life
823: The Question Trap
What they find harder to hear, I think, is that being around my mother is not a nightmare or a horror. It's not like any of that. Here's what it is. In a cafe, as we share a scone, mom and I make what passes for conversation. I've learned to ask only the sort of question that doesn't require any specific information to answer. So, things going okay with you these days? How's my favorite mom doing?
This American Life
823: The Question Trap
You doing all right? I tell her funny little stories about my kids. Sometimes we leaf through a magazine, looking at the pictures and commenting on them. Sometimes we look out the window and I make general observations that require no specific response. Looks like spring is coming. Look at those leaves coming out on the trees. That guy's hair is really curly.
This American Life
823: The Question Trap
With each exchange, Mom smiles at me, beaming affectionately in that familiar, slightly conspiratorial way, as if we're both in on the same joke. So, our conversations go nowhere. But it doesn't matter what we say, really, or whether we said it before, or whether it's accurate or interesting or even comprehensible. The exchange is the point.
This American Life
823: The Question Trap
Mom and I are playing catch with touches, smiles, and gestures, as well as words, lobbing them back and forth to each other in slow, easy underhand arcs. The fact that she drops the ball more and more often doesn't stop the game from being enjoyable. It's a way of being together. Does she recognize you?
This American Life
823: The Question Trap
She may not recognize me in a narrowly cognitive sense, but my mom does recognize me as someone who's there with her, someone familiar perhaps. And she doesn't need to have all the details sorted out in order to care for me. The impulse to care, the habit of caring, these are things that run deep in my mother.
This American Life
823: The Question Trap
Someone who, for most of her life, was very engaged in caring for other people, her children, her husband, her grandchildren, her friends. Even some of the behavioral quirks that my mom has developed make sense to me in those terms as expressions of care. Here's an example. People with dementia often engage in repetitive behaviors, and mom is no exception.
This American Life
823: The Question Trap
When I take her out to a cafe, I usually get a cup of black coffee for myself and order a cup of hot chocolate for her. Not too hot, and don't forget the whipped cream on top. As we drink them, she checks constantly to see whether my cup and hers are even, whether the liquids have been drunk down to the same level.
This American Life
823: The Question Trap
And if not, she'll hurry up and drink more to catch up or else stop and wait for me. Or if we share a cookie, she's concerned to make sure that the halves be the same size and that we eat them at the same rate.
This American Life
823: The Question Trap
I think keeping track of whether our drinks and cookies are even comes naturally to my mother, a woman who has always had to carefully divide quite limited resources, first with her own brothers and later among her four children. She's cared about such details all her life, and caring about them was also a way in which she cared for other people.
This American Life
823: The Question Trap
Mom also does still take care of me in some small but important ways. One time, a little more than a year ago, I stopped by the assisted living facility where she was living at the end of a very busy day and an especially hectic week. I had stayed up very late the night before trying to finish grading student papers, then spent the whole day teaching and in meetings.
This American Life
823: The Question Trap
I went with her up to her room, I turned on the TV, and we sat down together on the couch. I was exhausted. I leaned back and yawned. Mom patted my hand and said to me, you're tired. Just go ahead and sleep. You can just lay down right here. And so I sat there next to my mom, holding her hand, feeling her warmth against me all along one side of my body.
This American Life
823: The Question Trap
And I leaned my head on her shoulder and slept. Does she recognize you? For a while, after we first moved my mother into an assisted living facility, she often said that she wanted to go home. I understood this to mean that she wanted to move back to the house where she had lived for 40 years until my father's death, the house in which I grew up.
This American Life
823: The Question Trap
Usually, I responded with my own mild version of reality orientation, explaining as gently as possible that that house was all empty and cold now, and nobody was there to keep her company or help her do stuff, so it was probably better to stay here. One time, though, I asked her a question instead. You mean home to the house up in Edmonds? No, on the farm, she answered. You go downtown?
This American Life
823: The Question Trap
With her raised arm, she traced out the curve of a long-ago road. For the first few years of her life, my mother had lived on a small farm in southern Idaho before her father moved the family to Seattle during World War II to seek work on the docks. "'They're inside there,' she added. "'Who?' I asked. "'My mom and my dad.'" My mother's in her 70s.
This American Life
823: The Question Trap
Her parents are not waiting for her inside an Idaho farmhouse. You could use that evidence to draw a clear line between us. Me, here, on the side of reality, competence, personhood, recognition. Her over there, on the side of delusion, incapacity, not quite fully human. But what she was longing for was her childhood home. She missed her mom and dad.
This American Life
823: The Question Trap
She was trying in her own way to hold on to them, just as I was trying against the odds to hold on to her. Our predicament is exactly the same.