Aging Care LLC

Reprinted from: http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?_r=0

FRAYING AT THE EDGES Part 4
By N. R. KLEINFIELD

OTHERS COULD HARDLY see it. She knew better. She was slipping, the disease whittling away at her, leaving her less completely who she was. Certain words became irretrievable, sentences coiled inside her mind and refused to come out, belongings vanished: keys, glasses, earrings. She lost things and then forgot what she had lost. Or that she had lost them.

After returning from a trip, she stowed her suitcase in the closet, still bulging with clothes. Weeks went by. She didn’t miss the items. Then she couldn’t find her glasses. Well, maybe they were in the suitcase. She unzipped it and discovered all of these clothes wedged in there. Hmm.

A fraying at the edges of her life.

“I know the tide is going out on my memory,” she would say.

She had trouble with elapsed time. It was getting impossible for her to distinguish between the past, the present and the future. Blots of time melded together. She seemed forever in the present, as if her life was one jumbled moment — breakfast, shower, lunch, dinner, movie, shopping, everything conflated together and happening right now. It was as if, without even trying, she had become a Buddhist.

“I have no clock in my head anymore,” is how she put it. “The concept of how long it takes to do something has been lost. What an hour feels like is gone. It’s morning and then afternoon, and I think the morning was yesterday. With time, it’s always just the present. If you ask me what I’m doing at 3 p.m., I just have to make it up.”

If she had seen someone that morning, by afternoon she would wonder if it had happened some other day. “I could be talking to you and I could have been shopping, and I won’t be sure if I did that this day,” she said. “Like right now I can’t reconstruct yesterday except that the air-conditioner sounded like it was about to blow up. Because my life was about to end. I’m not able to remember what happened earlier. And I’m not thinking about what will happen next. Because I don’t know.”

She knitted her brow. “The time thing is the part where I feel most alien from myself and alien from other people,” she said. “Sometimes I feel like I’m some sort of loose atom bouncing around. Like I’m not doing anything, because I’m floating from thing to thing and then I don’t remember that I did something. And you’ll say, ‘Well, write it down.’ But then I’ll look at the piece of paper and wonder, What is that?”

To untangle the confusions in the infrastructure of her life, she claimed small victories however she could, savoring them. “I’ve been washing the sheets and towels more often because I’m not sure when I last washed them,” she said. “I forget how much food we have. I check more often. I know Jim is monitoring the food much more.”

Her organizational tool had been her mind. But now her mind was a mess, as if a windstorm had upended its contents. “I always remembered phone numbers, addresses, how much people paid for their house,” she said. “I’ve lost all that.”

She knew how to live with a good memory. Who knew how to live without one?

Her new best friend was her iPhone. She fished it out maybe 20 times a day and scrolled through the blocked-off calendar and notes to herself, the lumber of dates and names that never seemed heavier. Have to be where? When? Do what? Call whom? She used the camera to snap pictures of places to remember them. This was a big improvement over the Alzheimer’s experience of her father, who came home several times in a police car.

To navigate day-to-day minefields, she improvised tricks. “I came up the elevator the other day and saw two of the neighbors and I couldn’t remember their names,” she said. “I forgot the whole floor — 14 names — of my apartment building. I thought I better figure out something. So last week I came up with this system. I’ve got everyone associated with someone in my family. And I’ve been practicing. Eric, the next-door neighbor. His name begins with the same letter as my father. Joe is my stepfather. And so on. It’s not foolproof. But it helps.”