The question I can’t seem to evade.
I spent the last twenty minutes retrieving a piece of tree bark from her mouth. We like to let her wander around the garden in our backyard. She seems content there, familiar. I remember her scolding us when we were younger, as a basketball rebounded off of the rim into her perfectly pruned roses. She spent hours digging and planting and weeding. I never did develop her green thumb. I hope her dementia skipped me too. The garden is nice but it can present a problem with its colorful temptations and my mother’s recent propensity for picking up small objects and giving them a taste. A piece of paper. The kitchen sponge. A piece of tree bark.
Before you chastise me for not watching her more closely, let me just tell you, she’s quick. I bent down to fix my shoe one day and when I looked up she had lugged a huge bar stool across the living room. She’s busy and speedy, but those aren’t recent developments. She has always been a fast walker with places to be. I used to complain as we raced through the aisles of the grocery store. She said that was just the pace she walked, and didn’t I want to get home sooner anyway?
Her fast pace is nothing new but what she uses it for has evolved quite a bit. These days, it tests our response time as she smuggles scraps of napkins into her mouth. Oh, and I promise you, it isn’t because she’s hungry. In an effort to keep her slender frame from losing weight, we have her on the Michael Phelps diet. Every day feels as though our mission is to fatten a lamb for the slaughter (not my favorite analogy here but it paints a picture). With three hearty meals, protein shakes, and snacks throughout the day, I’m baffled when she attempts to ingest additional items.
When I see that she has pocketed the tree bark into her cheek, I make my move with a quick finger sweep. She protests but I am now skilled in this unique task. I whip out the bark with only minor teeth marks on my pinky.
So when you ask if my sixty year old mother, six years into Alzheimer’s disease, remembers me, forgive me if I sigh a little. I know where that question comes from. It is born of the deep fear that many of us have when we consider this disease. We think of our grandmother, our father, our sister, our own self. Will they or I get this horrible disease? And if we do, will our worst fear come true? Will we forget our family?
When first faced with my mother’s disease, this question consumed my thoughts as well. I dreaded it until the day finally came, when she no longer called me by name. It was brutal, and it still is brutal. But is it the worst part of the disease? Does it deserve to be the first question out of people’s mouths when inquiring about her state?
Perhaps I am not the best person to answer this question. Because while my mom doesn’t call anyone by name anymore, or speak in any coherent matter, she still lights up when I walk into the room. I can still make her smile. She hugs and kisses me with a warmness she has been perfecting for over three decades as a mother.
Today the worst part of her disease was fishing a plant out of her mouth and feeling guilty that I didn’t notice it sooner. It was worrying if I had remembered to shut off the main gas to the stove because she has developed a habit of playing with the knobs and I really don’t want us to go out in a big ball of fire. It was watching her stare at the wall for a minute straight and trying to decide if she still feels happiness.
Tomorrow will bring its own unique set of worsts.
I don’t know if she remembers me. I’d like to think she does. Today I will settle for a smile and big hug when I sneak up behind her. If you aren’t familiar with this disease, it’s easy to assume that forgetting other people is the end all, and it may feel only natural to ask if that has happened. Here’s my advice: find a different question.
For the most part, people who inquire about my mom do so with incredible sensitivity and sympathy. A simple, “How’s your mom?” or even better, “How is your mom, today,” tells me you know that each day brings its own set of challenges and leaves space for me to be more honest in my reply.
On two occasions that I remember vividly, I was asked if my mom was, “getting better.” Unless you know something I don’t know about the nature of progressive, incurable diseases, I’m going to have to assume that you did not know that Alzheimer’s is currently a progressive and incurable disease. And in that case, as a general rule of thumb, I’m going to recommend that you refrain from asking if someone is “getting better” when you aren’t sure if that is humanly possible. It actually just sucks for the person having to answer the question.
And yes, people still ask, “does she remember you?” And I pause. Because as I said, I genuinely don’t know. But when I hear that question, it usually signifies to me that the asker has not had much experience with the disease on a personal level. They probably haven’t dealt with the nuances of this question, because remembering someone is not a light switch that suddenly gets flipped off. It is camouflaged in a long stare, a flicker across the eyes. It always keeps me guessing. It’s the tide that has gone out, only to flood back in for a brief moment of lucidity.
So I’d love it if instead you asked, “How’s your mom today?” And I’ll probably answer that she’s hanging in there, and so am I. And thanks for asking.
Alz Things Considered 