For a disease like Alzheimer’s, which has a trajectory that goes in exactly one direction, the challenges in dealing with it are varied and unique and always, always changing.
The first few times your parent repeats herself in conversation, you might think, “Oh, a senior moment!” That might be patronizing, or it might be denial. After all, most people repeat one story or another now and again, and older people often do forget when they’ve already told you something. But when your parent (or in my case, my mother) asks me how old my son is three or four times in one conversation and doesn’t remember she has asked before, it feels surreal. I have to work hard not to dismiss the conversation as a strange collection of unrelated words. Will she even remember tonight that we talked?
“What grade is he in?”
“Oh, he’s so old!”
But there is one thing I never do. I never say, Mom, I already told you that, or Mom, you asked this five minutes ago, don’t you remember? One reason why I don’t lapse into those natural responses is because that’s kind of cruel. She can’t remember that she already asked me. She’s not doing it to annoy me. The other reason is more complicated, but more interesting. If I let her just talk, just ask whatever she wants or bring up topics that occur to her, I can learn new things about her. About not only the progression of her disease (She never used to ask how old my kids were, but now she does. Maybe the disease is accelerating right now), but about the different feelings and opinions that occur to her each time she asks the same question. Those things change. Her opinions change within one conversation. Can you say that?
“What grade is he in?”
“Aw, he’s still just a baby.”
And I see that maybe, with just the mere act of talking and listening, it inspires her brain to fire its synapses in new ways.
This morning she told me, “It’s soup day.”
“Does that mean you’re making soup?” I asked in horror, as she is not supposed to be cooking anymore.
“No, it’s just some silly thing they do in the building. You just drop in at my neighbor’s apartment anytime, like an open house, and she’ll have a bunch of soups for us to try. People can stay. You can also come back for dinner.”
“Well, that sounds fun,” I said.
“I’m not going! I don’t want to have soup with a bunch of … of old people”—they are younger than her—”or … or strangers!” She knows them all. There are no strangers there.
“At least you wouldn’t have to cook. Plus you like soup. I mean, who doesn’t like soup? You would have to be a crazy person to turn down free soup.”
“Hmm,” she said, considering. “Well … I do like soup.”
She changed tacks immediately. “It sounds quiet there by you. Where are the kids, in school?”
“They’re here. It’s Sunday, so …”
She cackled instantly. “Oh, of course! I’m so stupid. Every day is the same, I don’t know what I’m talking about.” But she said it good-naturedly, laughing at herself.
That’s another thing about Alzheimer’s. So much of the personality becomes blunted, but so much of it remains the same. I think if you are an easy-going person in your youth, you retain that into your dotage. I think bitter, angry young people become bitter, angry old folks. Just my opinion. My mom rarely yelled or flew off the handle when my sisters and I were growing up. She isn’t belligerent now.
“So what grade is he in now?”
“How’s he doing?”
I answered, and I awaited the new twists and turns ahead of us. I was not disappointed when my mother announced, “You know that Beyonce?”
“Yes!” I cannot wait to hear how Beyonce, that Beyonce, will reroute this conversation.
“In her video, she is dancing on the grave of Ulysses S. Grant! I think that is terrible!”
I laugh out loud. Among my friends, I am the arbiter of bad taste, but I’m not up on all pop culture. Did Beyonce do that? I cradle the phone between my shoulder and ear and Google “Beyonce Ulysses Grant” and discover that she indeed danced (using “lascivious choreography”) upon his tomb during a performance.
If nothing else, I adore that Alzheimer’s has allowed my mother to hang on to this juicy, lasciviously choreographed tidbit, waiting, waiting, for the right opportunity to unleash it twelve years later during a conversation about fifth grade and soup.
“I agree,” I say. “Terrible!”
“Disrespectful, is what it is. He defeated the Confederacy.”
And this is the thanks he gets. Beyonce’s patently inappropriate, scantily-clad gyrations on his grave.
If you don’t interrupt a person with Alzheimer’s, if you don’t constantly cut them off and say, “What are you talking about?” or patronize their conversational tangents, you can learn some pretty amazing things.
Other things, too.
“There’s no food in the house. We’ll have nothing for dinner,” she said, soup day forgotten. Her voice grew plaintive, confused, panicked. “What will we eat? They won’t let me drive to the store. Why aren’t I allowed to drive anymore?”
“I think just for, you know, safety reasons,” I said. My sisters and dad had decided it was for the best. And it is for the best. And for the worst, too.
“Where is the car?”
Two summers ago during a visit (the Alzheimer’s had just begun its ascent—or descent, if you want to think of it that way), my mom made spaghetti and meatballs for my kids, husband, and me. She wrung her hands the entire meal, apologizing for forgetting the salt.
“I can’t believe I did that. God, am I a fool or what? I’ve only made this FIVE HUNDRED TIMES in my life.”
“It’s okay, Mom,” I said.
“She’s getting old. Old people forget everything,” Dad said, smirking, no idea then what lay in store for the future.
She probably apologized for the salt six times.
“It’s okay, Mom. Salt is bad for you anyway.”
She shook her head and sighed. Then she said, “You know that Eminem?”
Oh God. My eyes darted over to my children’s impressionable ears.
She took my cue. “He sings about”—she lowered her voice dramatically, as one does when one discusses things too awful to discuss out loud, such as cancer and landlords and Eminem—”raping his mother! Honest to God, I heard it on the news.”
When? In 1996? Her altered brain doesn’t care.
She spends a lot of time pacing back and forth through the apartment, picking up little bits of lint and fuzzies off the carpet. She puts them in her pocket. She puts a lot of things in her pocket, like silverware. When people come over and leave their boots in the hall, she goes out there and picks up snow from the floor, examining it. She doesn’t know what it is.
She’s cooked broccoli on the stove and forgotten about it, burning the pan and setting off the smoke detectors. She has worn her shoes on the wrong feet all day and not noticed. She cannot understand how to put sheets on the bed. She throws parts for the coffee pot in the garbage.
“I better go,” Mom said on the phone today. “I’ve got to get your father off to church.”
“I don’t need help!” he shouted, his voice farther away. “You’re the one that needs help!”
“What do I need help for? I’m not going anywhere.” Some muffled sounds then…maybe she was looking for his coat or his keys. “Actually I’m …” Her voice trailed off and then there was silence for five or six seconds. “I don’t know what.” She expelled a gust of breath into the phone, sharp with frustration. “I hate my brain.”
“Hah! Wait, I know. It’s soup day. Our neighbor has people over.” And she told me the whole thing a second time.
“That sounds fun,” I said again.
“I like soup,” she said. “I think we might go.”
[This video reveals a 12-minute virtual tour of what people with Alzheimer’s experience. It is an incredible experiment and shows you exactly what it must be like to suffer with this affliction. It reminds me to have patience and compassion for my mom.]