what’s the sound of two edies talking?

I got up early to call Big Edie and wake her for her hearing aid appointment. She no longer feels confident in her ability to set the alarm or remember why she set it.

I did the same thing yesterday—woke her at 6am for a 9am hearing aid appointment. She was exhausted and it took a bunch of r-r-r-rings for her to hear the phone, realize what the sound was, and answer. That exhausted. That deeply asleep. But, she made the 9am appointment in time. Early even.  Real early. Her appointment was not for that day, but for the next day.

This happens a lot. Sometimes she’s a day early, sometimes she’s a day late.

To be fair. She’s 85 and she hasn’t had a real job in twenty years. Hasn’t had to keep a schedule in two decades. As far as she’s concerned, it’s been year after year of weekends and holidays.

While my week looks a lot like this:

Businesswoman resting head on desk

Hers looks more like this:



Ever since she’s started to forget things she’s been keeping a giant calendar with all her appointments written on it. And I remind her to tell me when she makes an appointment, and I keep an electronic calendar with all her appointments. That works, most of the time. Sometimes she forgets to look at the calendar. Not yesterday. She had the calendar, but forgot what day it was.

I set my alarm for 6am to wake her today, and before it even went off, the phone rang and it was Big Edie, calling from her cell phone. Usually a call from the cell phone means someone is in the hospital. Usually, her 93-year-old boyfriend—one of the reasons she’s so exhausted all the time, looking after him. Worrying after him. And waking up on a regular basis at 3am, not being able to go back to sleep, and playing solitaire online until the sun comes up, then dragging herself through the day because she “can’t” nap.

Instead of a nap, she regularly falls asleep sitting at the kitchen table, in the passenger seat of any car that’s moving, has been known to “close her eyes for a second” at a red light, reading a book, and watching any movie or TV show. At Broadway shows, my father fed her M&Ms one at a time to keep her from falling asleep. She never sleeps when she is eating. M&Ms. One at a time. There are mini-Milky Ways and chocolates secreted all over her house today, a leftover habit of the M&M days.

This morning she called, she’d been up since 3am. Her phone is dead. All the lights in her bedroom are down, except one. And she was afraid, really afraid, that I would call at 6am to wake her, not be able to get through, and I would worry. So she stayed awake for three hours to call me at 6am and tell me not to worry.

A blown fuse, and she’s still got it together enough to know that, but when she checked the fuse box they all looked fine. And this is the part that she never remembers, that a blown fuse, or actually a flipped breaker, doesn’t always flip all the way. Go turn them all off, then turn them all on again I tell her, and hang up the phone.

She calls back a few minutes later. Caller ID says she’s calling from the home phone now, so it worked.

“But now something is beeping. I can’t find it. I think it’s the box. You know, the box.”

I do know. I know that if something is “where you put things you eat with” it’s in the silverware drawer, and “the box” means either the fire alarm or the CO2 detector. The fire alarm is kept on a bookshelf, with no batteries. I direct her to the CO2 detector, plugged into the wall behind a bench.

“Pull it out of the wall,” I say, “just unplug it for now.” She does, but I can still hear beeping.  “What did you unplug?”

“Something. I don’t know. Something. Do you think this isn’t it?” I am thirty miles away, on the telephone, and I know she’s holding something up for me to look at, which I would certainly do if this was thirty years into the future and we all had videophones, or bat phones, or it was today and we were Skyping or Facetiming or GoogleHangouting or anything else that we’re not doing because she is 85-years-old and are you kidding me? She has unplugged something else entirely.

She finally gets the CO2 detector unplugged and all is right with the world again. Her phone works. Her lights work. Her apartment doesn’t beep. I will go out there this week and put batteries in the smoke detector, reinstall the CO2 monitor, mark which breaker corresponds to the lights in her bedroom.

It would be so much easier for her, she would feel so much safer, if I lived in her building on Long island. It has a swimming pool, she reminds me for the millionth time. It would be so much easier for me, and I would feel so much more at ease, if she lived in my building here in Jackson Heights. There is an empty apartment on my floor. Two of them. One with a balcony.

But she would be miserable here, even with a balcony, in a neighborhood she doesn’t recognize, with no familiar faces, no landmarks, no friends. And I would be miserable there, even with the swimming pool, in a neighborhood I know like the back of my hand, with landmarks of an unhappy childhood and ghosts of my own personal teenage wasteland, and no friends because we all got out of Dodge as fast as we could.

She says it’s early stage Alzheimer’s, that it’s not that early because she got a diagnosis five years ago, or eight, from some doctor I don’t know. What I know is that two years ago a doctor I do know said she was high functioning with mild cognitive impairment. But that it’s gotten worse since then. That whatever it is it’s still early stage, that things only get worse, or harder, or more confusing, or heavier, or more difficult. That this is the hardest stage for her but the easiest stage for me. That at some point she won’t realize how many things she doesn’t know or can’t do or doesn’t remember.  What I know is that it’s later than I know because she is hiding things from me and I discover them little by little. Like how she sometimes gets lost coming home from familiar places.

“What would I do without you?” she says.  I wonder that too. And I wonder what I will do without her.

4 thoughts on “Early

  1. You kill me making me cry this early in the morning. You write so beautifully about experiences we are all having. Thank you, just thank you.

  2. Thank you Jodi for putting into words, what at times is difficult to express as a caregiver. Thank you for your courage and vulnerability in expressing such an intimate part of your life with the world. I am right there with you….

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